Newsletter – Page 11 – Polio Survivors Network

Linc Pin Volume 3 Issue 10

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 10 – April 2002

WebSite – http://www.lincolnshirepostpolio.org.uk

Remember the opinions expressed are those of the individual writer(s) and do not necessarily constitute an endorsement or approval by the Lincolnshire Post-Polio Network. Although it does not provide an endorsement, it is provided as a service to those seeking such information. ALWAYS consult your doctor before trying anything recommended in this or any other publication. Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

5 normal 4 good 3 fair 2 poor 1 trace

100

120

Percentage of Functional Ability

Normal Muscle Abili ty Pol io Muscle Ability

E X P L A N A T I O N O F M U S C L E F A T I G U E ( 1 )

P o l i o M u s c l e s F u n c t i o n a t a l o w e r l e v e l

B e a s l e y W . C . 1 9 6 1 a n d P e r r y J 1 9 9 5 .

5 normal 4 good 3 fair

100

120

Percentage of Functional and Resting Ability

Normal Muscle Ability

Average Resting Muscle

Polio Muscle Ability

Average Resting Muscle

E X P L A N A T I O N O F P O L I O M U S C L E F A T I G U E ( 2 )

L e s s R e s t i n g M u s c l e A v a i l a b l e

B o l l e n b a c h E , 2 0 0 0

TWO SLIDES FROM PRESENTATION REFERRED TO ON PAGE NINE

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – <membership@lincolnshirepostpolio.org.uk> and Requests for Information Packs, Leaflets, copies of articles to

Hon. Sec. Wendy Grimmitt <Hon.Sec@lincolnshirepostpolio.org.uk>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR – [01400 282546]

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

European Membership – LM E203 – Member E25 a year – Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail. (US$ checks to Lincs PPN. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA)

Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to enquires@ or newsletter@ or treasurer@ – lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – June 2002

Articles for publication by May 15th – Publication date 5.6.2002

All Email addresses – @lincolnshirepostpolio.org.uk Founder & Chair – Hilary Hallam – hilary.hallam@

Vice Chair – Janice Eary – janice.eary@

WebSite Administration, Chris Salter – chris.salter@ Honorary Secretary – Wendy Grimmitt – wendy.grimmitt@ Honorary Treasurer – Frank Grimmitt – frank.grimmitt@ Fund Raiser – Len Van Zyl – len.vanzyl@

Committee Members – phil.bilton@ – john.eary@ – ted.hutchinson@

1 Two slides from Presentation by Hilary Hallam referred to on page 9

3 Editorial by Hilary Hallam

4 – 11 To Reap the Rewards of PPS Exercise by Sunny Roller MA and Frederick Maynard M.D. [Includes further editorial comment and email exchanges from the authors and Lauro S. Halstead M.D.

12 – 13 Ask Dr. Perry – Question. What is the natural progression of post-polio syndrome? Will a person return to the same degree of paralysis that was experienced at outset?

14 Can Stem Cells Help Polio Survivors

by Edward B.Grebenstein, Jr. President. The Polio Society.

HINTS, TIPS & BITS FROM PPSERS.

15 – 17 The Shadow that Lurks in Recovery, My experience with polio and Post Polio Syndrome by Member Susan Conley.

17 Groceries chosen and delivered with NO energy output except fingers on keyboard!

18 Our PPS Get-together

by Life Member Sue Karnes.

18 – 19 I’m quitting work

Roger Brown, Australia.

19 I elected to have a trach. I have no regrets!

Richard Daggett, President

Polio Survivors Association, USA.

20 Depressed or Distressed

by UK member Val Thorne.

21 Nutrition Question’s Answered

by Life Member Jann Hartman

22 – 23 From Wendy, Hon Sec. Musings – Musicals Wordsearch.

24 A Thousand Plus Thankyou’s.

page 24.

Letters to the Editor

Reports

By the time you receive this Richard and I will have returned to Lincoln. As I start the newsletter, Richard and I have just returned from an 1100 mile round trip to north east Georgia. Sue Karnes – a Life Member – invited us to come and visit. (read Sue’s story page 18) Tommy and Judy Conrad (the instigators of the Branson Internet Reunion, June 6th to 10th 2002 in Branson Missouri – email Ann Post <POST@TARLETON.EDU>), Lily and Tim Guerry from the other side of Atlanta, and Jo Caywood from Macon Georgia joined in. (All of us subscribe to the St.Johns Polio Email List). On the way back we stopped for a few days with Art and Nancy Coburn near Gainsville, Florida. It was good to talk with Art and his Massage Therapist again. Randy has agreed to write us an article about massage and PPS. With grateful thanks to our hosts we were able to take plenty of rests en route and during our visits. We were back to ‘ our normal’ on the fourth day home.

During the time over in the USA we have been to quite a few PPS meetings and met with other Polio Survivors. Read and replied to thousands of emails and talked with others on the phone. Sharing information helps spread it further.

A Thousand Plus Thankyou’s. Our back page which we started with a few adverts to generate some more funds will now include donations received. Hot off the Press we are delighted to tell you to turn to the back page where we give a Thousand Plus Thankyou’s. In future we would like to acknowledge the donations received towards our work in a block on the back page. We would like to put your name and town and/or county/country where you live. It is not our intention, as a general rule, to mention amounts unless you request this or the donation is large and we have received your permission to print the amount.

The LincPIN – Lincolnshire’s Post-Polio Information Newsletter – contains a huge variety of articles about problems that Polio Survivors might come up against. This is number 34, over 800 pages! Together they give you plenty of medical information to share with any health professional you are seeing.

The newsletters contain many articles that have been written by well renowned Post Polio Specialists. They have been working with Polio Survivors for many years in their PPS clinics. They have amassed a lot of information on polio and its late effects. The assessments they provide for their patients are comprehensive and multi-disciplinary. You are seen by a doctor, a physiotherapist, an occupational therapist, a social worker or counsellor, and if necessary an orthotist, respiratory therapist etc. Reported actions of weakness are observed. Testing can take up to 2 days.

An excellent article in this newsletter that we hope will help you – To Reap the Rewards of Post-Polio Exercise by Sunny Roller M.A. and Frederick M. Maynard, M.D. – has also given us a marvellous example to highlight a problem that is occurring in the UK, and possibly in other places as well.

Not every word of an article can be remembered, often there is a particular paragraph or phrase that stands out to the reader. If this phrase is then passed on to other health professionals who have not read the full article it can then be taken out of context with damaging results to the patient.

The following explains this – [Excerpt from To Reap the Benefits of PPS Exercise

As a general rule,

• muscles that have a grade of 3 or less (using the

muscle examination scale: 0 = no contraction and

5 = normal strength) should be protected and not

exercised;

• grade 3+ muscles can be exercised with caution;

• grade 4 and 4+ muscles can be exercised

moderately;

• and grade 5 muscles can be exercised

vigorously] .

The phrase grade 5 muscles can be exercised vigorously, grade 4 and 4+ muscles can be exercised moderately are of particular note. If a muscle is incorrectly overgraded then the prescribed exercise can be too high. It is imperative that the whole article is read and single phrases are not taken out of context. As reported in our newsletters since June 1999 when I realised why recorded gradings on my medical records had to be incorrect – Manual Muscle Testing alone will in most cases not accurately grade our muscles endurance. If you believe this has happened to you then please write and tell us.

During the last few weeks email communication has been flying backwards and forwards across the Pond in response to the content of the draft editorial that I sent to Dr. Maynard and Sunny Roller for their comments. I have included highlights of the exchange so that you can have some idea of the work that goes on behind the scenes.

I am grateful to the Health Professionals involved who so graciously give up their valuable time to answer our emails so quickly. Read the article and further comment and then Ask Dr. Perry that follows.

Upper Cervical Article postponed to next newsletter.

Sunny Roller, M.A.

Polio Survivor, Program Manager University of Michigan Health System and

Frederick M. Maynard, M.D.

U.P. Rehabilitation Medicine Associates, PC Marquette, Michigan

In this year, 2002, we know more about exercise for persons who had polio than we did fifteen years ago. There have been a variety of studies conducted by superb and caring scientists, along with numerous personal accounts from polio survivors, themselves, which warrant a new way of thinking about exercise.

Exercise is different than physical activity. For the purposes of this article on exercise, it may be helpful to define these two terms. Exercise is generally defined as planned, structured and repetitive bodily movement, whereas physical activity is the movement you do throughout the day. Physical activity does increase the amount of calories you burn, but unlike exercise, is not necessarily planned, structured or repetitive motion. One benefit of exercise can be an improved ability to take part in ongoing daily physical activity.

Whether you have a planned exercise program or simply rely on day to day physical activity to stay fit, the message to polio survivors today is “beware of inactivity!” In the 1980s polio survivors across the nation heard and heeded a strong medical warning about the dangers of doing exercise, especially too much exercise and/or physical activity, but now postpolio scientists have qualified their advice. New knowledge tells us that no matter what our level of disability is, we should be encouraged to value exercise, enterprising enough to come up with a highly customized plan and enduring enough to reap the rewards. When it comes to exercise, we need to be smart, not scared! One woman in our University of Michigan wellness study told us that in the late 1980s she quit exercising completely out of fear of muscle loss, and gained 35 pounds. Dismayed, she joined the 1996 wellness study to find out what she could do to feel better and it worked! Exercise was put back on her list. She was guided to be selective and conservative as she designed her weekly plan for “working out.” She found out that polio survivors need to:

1. First, gather the best medical literature from postpolio researchers, educators and clinicians such as Grimby, Agre, Perry, Halstead, Headley, Maynard, Birk, and Yarnell. They will all say that we must each have a custom-tailored plan since we were all affected a little differently by the capricious poliovirus. (See Selected References on Post-Polio Exercise at the end of this paper.)

2. Next, find professionals to work with. A wellselected physician and a physical therapist or exercise physiologist who each know or are willing to learn about post-polio issues would be most appropriate. There are no specific formulas for any individual that can be written in an overview article such as this. You must have one-on-one, in-person evaluation and testing to see what works and what does not work for you.

3. Then, together, literature in hand, establish a plan for exercise.

4. Start slowly, recognize limitations along the way, make adjustments in the weekly activity plan and keep going. Thomas Birk, Ph.D. (1997), recommends a two-month start up period in which your response to exercise is supervised and monitored by the professionals you have chosen to work with.

Gather Literature

The best place to start a literature search on postpolio exercise is to tap the International Polio Network’s resources. They have a variety of the latest articles from the best researchers in the world on this very specialized topic. They can be reached by calling 314-534-0475 or connecting with their website at www.post-polio.org. You may also want to do a literature search of the medical journals at your local library. Librarians can help you do a “Medline search” for pertinent medical publications or you can do one on your own by tapping into the internet, going to www.medscape.com, then clicking on Medline.

Find Professionals

You need to establish an exercise coaching team. This can include you, your physician, and a therapist. If you have a post-polio physician that you trust, he or she is the best person to start with. This physician can then recommend a physical therapist or exercise physiologist to work with as part of your new “exercise coaching team.” If you need to first find these professionals, the journey will be longer since knowledgeable post-polio helping professionals can be difficult to find or cultivate. Be encouraged to begin your search however. Remember, if you sense that a professional is not interested in post-polio issues, move quickly on to find someone who will work with you and is willing to learn and help.

Once again, the International Polio Network in St. Louis, Missouri can provide you with leads in this search. They publish a national/international directory of self-identified post-polio health professionals and support groups whose members know about the best helping professionals in their geographic area.

Establish a Plan of Action

The experts now agree, when it comes to exercise, a

polio survivor doesn’t have to do a lot, but one is highly encouraged to do something! Once you have gathered your exercise team, decide together what type of exercise is best for you and whether you want to join a group or exercise independently–or both! The amount of physical activity you do will also need to be addressed as you develop this action plan.

Maynard and Headley (1999) emphasize that the main focus of a new exercise program should be on stretching and general aerobic or cardiovascular conditioning exercises to improve endurance. Strengthening exercise, also called resistance training, needs to be approached much more cautiously, however, with a focus on very gradually building up functionally important muscles to a modest degree.

Ann Swartz, Ph.D. (personal communication, February 28, 2002), exercise physiologist at the University of Michigan Health System, describes each of these three types of exercise:

Stretching and Range of Motion Exercise Why is it important?

Stretching our muscles and joints is important to maximize and maintain function. For instance, arm circles can help maintain the function of your shoulders, making it easier for you to reach for something, or move something out of your way. Preventing tightness in your hips, knees, and ankles will help maximize your walking ability.

What types of exercises are considered stretching or range of motion?

These include arm circles, wrist circles, shoulder shrugs, calf stretches, lifting your knee up towards your chest, bending and extending your knee, knee to chest stretches, back stretches and ankle circles. Many people also enjoy the movements that are part of Yoga or Tai Chi. The following Yoga stretching exercise was part of the University of Michigan Wellness for Women with Polio Workshop and was particularly well received:

The Breathing Tree

• Stand or sit erect. Feet apart, body balanced over

hips. Arms at sides, palms forward.

• As you inhale raise your arms slowly up. Stretch

up, up.

• Exhale arms to starting position

• Inhale arms to starting position

• Inhale arms slowly up. Stretch up, up

• Exhale arms out at shoulder level. Turn head to

look at fingertips

• Exhale twisting from the waist toward the

direction you are looking

• Inhale forward. Turn head to look at other

fingertips

• Exhale twisting from the waist toward the

direction you are looking

• Inhale head forward and arms down to starting

position.

Cardiovascular Exercise – Why is it important?

Cardiovascular exercise is also known as aerobic exercise. It is exercise that increases your heart rate and blood flow, and makes you breathe a little more heavily than you would when performing your daily tasks. There are numerous benefits, some you may notice, and some you may not. The benefits you may notice include increased ease of accomplishing your activities of daily living and such things as getting in and out of the car, or going from place to place, and an improved mood. Benefits you may not notice include lower blood

pressure levels, improved blood cholesterol levels, and lower blood sugar levels to name a few.

What types of exercises are considered cardiovascular exercise?

Swimming, biking, and walking are examples of cardiovascular exercise. Machines such as the elliptical machines (low impact equipment that combines the movements of walking and stair climbing), stair climbing machines, rowing machines and a machine called the NuStep are also useful for cardiovascular or aerobic exercises. Swimming may be the best exercise for polio survivors because it minimizes mechanical stress on the body. However, you may not have access to a pool, or may not enjoy swimming. So, do what you enjoy, what feels good, and what is accessible.

At what intensity should aerobic exercise be performed?

Health professionals will usually recommend a moderate or low intensity. This means that you should be exercising at a level where your heart rate increases and you are breathing heavier than you would normally (when you are performing your daily tasks.) If you cannot easily carry on a conversation, slow it down!

Strength (Resistance) Training – Why is it important?

Strength training, also known as resistance training, improves muscle strength. When your muscles are stronger, it is easier to carry in your groceries, take out the garbage, and other tasks of your daily routine.

What types of exercises are considered resistance or strength?

Any exercises that involve hand-held weights, weight machines, stretch bands, or even balls are usually strength exercises. These types of exercises, like the stretching exercises, can involve any muscle of your body– from your head to your toes.

You may choose to exercise alone or with an

“exercise buddy.” Often, sharing the experience with a friend can be more fun, a chance to learn from each other and stay

motivated. Joining or starting a wellness program with other polio survivors may also help. Our 1996-1999 study at the University of Michigan (Tate & Leonard, 2001) of a holistic wellness program for women who had polio found that the biggest change was in participants’ exercise routines and resultant physical activity. Program participants changed dramatically in their reported regular participation in vigorous exercise. While prior to their participation 57% never regularly exercised vigorously and 23% did so often or routinely, after their participation, only 26% never did and 41% reported exercising regularly often or routinely. Similarly, program participants demonstrated a marked improvement in terms of the regularity with which they exercised with moderate exertion. Prior to the program’s onset, 63% stated that they did so three or more times per week. Following the program’s conclusion, 78% of program participants reported conducting moderate exercise with this regularity. Also, while prior to the program’s onset 42% of participants said they never engaged in stretching exercises and 23% said that they did routinely, following program participation only 11% said that they never did stretching exercises; 35% of participants said that they did them routinely. Six months following the conclusion of the program, 61% of participants said that they had increased their level of

physical activity during the last six months. We also found that exercising vigorously at least three times per week was associated with improved assessments of depression and distress.

Whether with a group or on your own, exercise programs can occur on land or in the water. It is important to do whatever works best for you. If swimming is not possible, you may want to exercise in your house, at a health club or gym, or outdoors. Pick an exercise you enjoy, whether it is walking, stretching, or any other exercise, and begin with small bouts. It is not necessary for you to perform only one activity. You can combine all your favorites. Also, you do not have to do the activity all at once. For instance, Tom enjoys biking, stretching and walking, so his exercise program was as follows:

Morning:

2 minutes stretching

2-5 minute break

2 minutes walking

2-5 minute break

2 minutes stretching

2-5 minute break

2 minutes biking

Afternoon:

2 minutes stretching

2-5 minute break

2 minutes walking

2-5 minute break

2 minutes stretching

2-5 minute break

2 minutes biking

This is how he began his exercise program, and slowly, over the course of months, he began to increase the bouts of exercise and decrease the length of his breaks. It is very important to rest between exercise sessions. Make sure you rest long enough to fully recover after the exercise; otherwise you may remain in a constant state of overload, which has negative effects on function. Incorporating regular rest periods into an exercise routine is called “interval training.”

Exercising in a warm pool is another way to work out. According to Lauro Halstead, M.D. Water therapy was the exercise of choice for many persons during their recovery from the original polio. It is still excellent therapy. Because of the buoyancy of water, it allows people to do things they can’t perform on land. For especially weak limbs, inflatable cuffs can be used to float an extremity. For other limbs, water resistance provides a workout that can be fine-tuned to each person’s strength. The principal disadvantages of hydrotherapy are that the temperature may not suit one’s body and it may be difficult to find pools that have lifts (if needed). Also, the surfaces around pools tend to be slippery and dangerous for anyone with a tendency to fall.

Aquatic programs for exercise have been recognized as morale boosting and physically beneficial. An early study by Hoffman and Maynard (1992) describes a swimming program for polio survivors as having a “therapeutic effect.” Emphasizing the added benefit of group exercise, the authors go on to say: ” it is of great importance to recognize that perhaps one of the greatest benefits of a program that brings together individuals who share a common concern is the emotional support they receive from knowing they are not alone in their efforts to confront the late effects of polio.” In a more recent Swedish study by Willen and Sunnerhagen (2001), 15 persons with polio’s late effects worked out in a pool for 40 minutes twice a week for 5 months. At the end of the study, participants reported an increased sense of well being, pain relief and increased physical fitness. Additionally, at the end of the 5-month period, their heart rates during exercise were down. The study’s investigators recommend this program of pool exercises in heated water.

In his 1998 book, Managing Post-Polio: A Guide to Living Well with Post-Polio Syndrome, Halstead additionally provides general guidelines for customized exercise based on his personal and clinical experience with the effects of polio:

Individualized and supervised program. Exercise programs should be supervised initially by a physician or physical therapist experienced in neuromuscular diseases, if not polio. Each program should be customized to your personal needs and residual strengths. Given these constraints, research studies have shown that some polio survivors (but not all) can improve muscle strength (as a result of new

muscle hypertrophy, or enlargement) and enhance cardiovascular endurance with a closely monitored training program. In fact, some studies have reported an increase in strength in muscles both with and without new weakness.

Type of exercise.

There are numerous kinds of exercise. Finding the one that is right for you and each of your limbs often takes trial and error. Usually, it is a good idea to find two or more exercises that can be varied, exercising different muscles on alternate days. For example, walking or exercising the lower extremities one day and then performing an upper extremity exercise the next. This kind of schedule provides a period of rest for each muscle group and variation that keeps the overall exercise program challenging and enjoyable. As a general rule, muscles that have a grade of 3 or less (using the muscle examination scale: 0 = no contraction and 5 = normal strength) should be protected and not exercised; grade 3+ muscles can be exercised with caution; grade 4 and 4+ muscles can be exercised moderately; and grade 5 muscles can be exercised vigorously.

Start Slowly; Make Adjustments; Keep Going

It will be important to gradually begin your personalized exercise routine-only do little bits at first. One approach might be to apply the “20% Rule.” If you have chosen to do a conditioning program, Stanley Yarnell, M.D. (1991), post-polio specialist, suggests a general conditioning exercise program to restore stamina or endurance using this “20% Rule.” You establish your maximum capacity (the point at which you begin to tire) for any one exercise. Then you begin your program by working at 20% of that maximum exercise capacity. Do that 3-4 times per week for one month and then increase the rate (time) of

exercise by another 10%. Each new month, increase the time exercising by another 10% until maximum capacity is reached. Yarnell clearly warns polio survivors to stop if they become fatigued during their exercise program, or if they experience pain or aches in their muscles. Most survivors, he says, “are able to continue increasing their exercise program to nearly the maximum capacity. ” Rests are to be taken every few minutes. This 20% Rule can also be applied to home stretching and flexibility programs too.

Halstead also lays out the following guidelines as you begin your exercise program:

Expect improvement. Exercise should make you feel better physically, and even, mentally. If the activity is not strenuous enough to improve your strength, much less your cardiovascular system (e.g., stretching or yoga exercises), it still should give you a psychological lift just to be doing a special activity for yourself on a regular basis.

Listen to your body. Avoid pain, fatigue, and weakness. These symptoms are signals that your muscles have overworked. A brief period of fatigue and minor muscle pain for 15 minutes to 30 minutes after exercise is usually normal. Symptoms that last longer than 30 minutes to 60 minutes reflect muscle overwork and possible injury. If this occurs, the exercise should be reduced or stopped. Any exercise that causes additional weakness should be discontinued immediately.

Pacing. Pacing [i.e., not going too fast and methodically taking breaks] has been shown to be safe and effective in increasing strength in some individuals. The intervals of exercising can be as short as 2 minutes to 5 minutes alternating with equal intervals of rest. The evidence also shows that secondary symptoms, such as generalized fatigue, can be reduced as individuals become conditioned and are able to perform more work with less expenditure of effort.

Use your best muscles. Polio is often a focal, asymmetric disease with variable amounts of weakness in different limbs. Exercise the limbs least affected or those completely unaffected by polio, while avoiding the more affected extremities. For instance, if only the legs were affected, then the arms can be used in a fairly

strenuous program that includes swimming or using an upper extremity arm bicycle; meanwhile, the legs will usually get adequate exercise in the course of doing daily activities.

Warm up and cool-down. As with other exercise programs, a warm up [very light movements such as walking slowly, arm circles or leg lifts that are done for about 5 minutes to get your muscles warm, and to get the blood flowing through your body] followed by gentle stretching should be done to improve flexibility and reduce the possibility of injury. After exercising, a cool-down period [very light movements like the warm ups that will slowly decrease heart rate and prevent any feeling of lightheadedness that can occur if exercise is stopped abruptly] should take place.

Finally, the type of activity should be one that the participant enjoys to minimize the potential for dropping out because of lack of interest.

Having the tenacity to stick with the program and make the proper adjustments is a real challenge, but polio survivors are good at setting goals and achieving them. Across the country men and women who had polio are beginning to apply these principles of exercise and are experiencing much success. The real reason to get into motion is that exercising can make you feel better! Joan Headley (personal communication, February 26, 2002),

high profile polio survivor with a mild disability attests to that in her personal account:

“In 1994, seven years after I had switched jobs from teaching school (and being on my feet most of the day) to working at the International Polio Network where I consciously stayed off of my feet, several

observations caused me to rethink my approach to activity.

The pain in my ‘good’ leg was gone, but was replaced by a pain in the hip of my ‘polio’ leg. Shopping trips and other family outings were cut short because I did not have the stamina to be on my feet for more than a couple of hours. Each year it became more difficult to climb the stairs to reach my symphony seat because my legs were weak. Then one night, while walking up those stairs and “listening to my body,” I also realized I was panting and “out of shape.”

One day an elderly polio physician suggested that the pain in my ‘polio’ leg was not from muscle weakness, but from connective tissue tightness and perhaps I should ‘stretch it.’ It was at that point I decided to make a change. I visited Bally’s with my brother and sister-in-law and we made the circuit trying each machine identifying my weakest muscles. So, I began an ‘exercise’ program using Dr. Stanley Yarnell’s (St. Mary’s Hospital, San Francisco) 20 % Rule. I did a select exercise to the greatest extent I could, and then cut it back to 20% and slowly added repetitions and distance carefully observing if there were any consequences.

Today, eight years later, I have eliminated the pain in my leg by doing 30-35 repetitions at least five times a week, as well as two exercises for my arms. I also walk one mile an average of four times a week and do about an hour of stretching exercises once a month in the pool.

For a few years, I walked in the neighborhood park and an added benefit was that I left all of my daily work problems there. I now walk at the YMCA on an official track with no worry about bumps in sidewalks or my safety when I walk in the evenings. I still leave my problems behind, however-the happily embraced extra benefit of a good exercise program.

Selected References on Post-Polio Exercise

Agre, J. C., (1995). The Role of Exercise in the Patient with Post-Polio Syndrome. Annals of the New York Academy of Sciences, 753, 321-339.

Birk, T. J., (1997). Polio and Post-Polio Syndrome. In J. L. Durstine (Ed), ACSM’s Exercise Management for Persons with Chronic Diseases and Disabilities (pp. 194-199). Champaign, IL: Human Kinetics, Inc.

Halstead, L. S., (1998). New Health Problems in Persons with Polio. In L. S. Halstead (Ed), Managing Post-Polio: A Guide to Living Well with Post-Polio Syndrome (pp. 20-53). Washington DC: NRH Press.

Silver, J.K. (2001). Post-Polio Syndrome: A Guide for Polio Survivors and Their Families. Yale University.

Call Gazette International Networking Institute at 314 -534-0475 or visit their website at www.post-polio.org to order:

Exercise for Polio Survivors, Gazette International Networking Institute, 2001.

Maynard, F. M. & Headley, J. (Eds.). (1999). Handbook on the Late Effects of Poliomyelitis For Physicians and Survivors. Saint Louis, MO: Gazette International Networking Institute.

References

Halstead, L. S., (1998). New Health Problems in Persons with Polio. In L. S. Halstead (Ed), Managing Post-Polio: A Guide to Living Well with Post-Polio Syndrome (pp. 20- 53). Washington DC: NRH Press.

Maynard, F. M. & Headley, J. (Eds.). (1999). Handbook on the Late Effects of Poliomyelitis For Physicians and Survivors. Saint Louis, MO: Gazette International Networking Institute.

Hoffman, C., & Maynard, F. M. (1992). A Program of Nutrition Education and Exercise for Polio Survivors: A community-based model for secondary disability prevention. Topics in Clinical Nutrition, 7(4), 69-80.

Tate, D. G. & Leonard, J. (2001). [Wellness for Women With Polio: A Holistic Program Model]. Unpublished raw data.

Willen, C., & Sunnerhage, K. S. (2001). Dynamic water exercise in individuals with late poliomyelitis. Archives of Physical Medicine and Rehabilitation, 82(1), 66 -72.

Yarnell, S. K. (1991, Summer). Non-Fatiguing General Conditioning Exercise Program (The 20% Rule). Polio Network News, 7(3).

Reprinted with permission. We are referred to many physical activities on their WebSite <www.ncpad.org> that are useful to people with postpolio.

[Editors comment – as mentioned in my Editorial I sent a draft editorial to Dr. Maynard and Sunny Roller for their comments. Other PPS Health Professionals have been added to the ongoing discussions. I have revised some paragraphs of my Editorial and will be sending copies of the newsletter to all who are taking part in the current discussions. We will keep you updated on this in the next newsletter.

Many Polio Survivors including myself have been given single one off Manual Muscle Testing as a base line looking for weakness. We have medically recorded Grade 5 muscles in limbs where we are reporting new and increasing weakness. ‘Grip my hand, pull and push against me’. Recorded – ‘power and tone of upper body normal’.

It may be of considerable surprise to readers to find that muscles in limbs that were paralysed at the time of polio, that recovered but retained functional weakness, for some, have also been recorded as ‘5 – normal’.

This is occurring because each muscle group tested can have enough power to perform the single task asked of it at that moment in time. As no weakness is found most often no further physical testing or observation is done in this area. The area is considered normal – grade 5 – and ‘could be exercised

vigorously’. That single test is not testing pattern of movement or corroborating the fact that when we try to sustain or repeat a reported action past a certain level we are then experiencing weakness.

Many Polio Survivors are reporting to us that where they are being offered physio treatment it is totally exhausting them, causing them considerable pain, and their reporting this is being met with ‘try harder’. I believe this could be the main cause of Polio Survivors stopping exercising.

In the UK we are for the most part not being seen by health professionals who have specialist polio and pps knowledge and experience like the authors of this article. We are mostly being seen by someone who may have seen one or two polio survivors over the last few years who genuinely believes that his form of testing is accurate. Who is unlikely to record medical gradings on your records if he thought that they were incorrect. He/she genuinely thinks that our reported problems are most likely ‘all in our mind’ because his testing has not found them.

On the Front Cover of this newsletter you will find two of the slides I use in my presentations which explain why our muscles are fatiguing.

Two researchers, W.C. Beasley in 1961 and Jaquelin Perry MD confirmed in 1995, that Polio affected muscles functioned at a lower level. Taking 30% as an average amount of muscle that is needed to perform a function would leave 70% of the remainder of the muscle resting. You can see from the lower slide that Polio Survivors have less functioning muscle and therefore less resting muscle available. Polio Grade 5 muscles functioning at 60% have half working and half resting. Go down to Grade 4 muscle with 40% function, 30% working leaving only 10% resting. No wonder we get fatigued when we push our weak muscles too hard.

UK Professor WJW Sharrard found in his research in the 50’s that muscle weakness was not seen till more than 44% nerve damage and paralysis not until 60% plus nerve damage. Many medical articles on postpolio state ‘also having problems in areas thought not to have been previously affected’. I believe the main reason is because our medical records and/or how we describe our polio only state the amount of damage that was ‘seen’ at that time. How do we find out how much damage we had you ask? Post Mortems – not a road any of us want to go down! We know that pacing and resting our physical activities and using aids and assistive devices so we do not waste energy helps us manage our lives more effectively with less pain and less fatigue. So stopping and resting our muscles before they get fatigued helps. See Dr. Perry’s article that follows.

Sunny Roller responded that my highlighted section was a direct quote from Dr. Lauro S. Halstead, another highly respected PPS Specialist, who incidentally is also a Polio Survivor with PPS.

Dr. Halstead responds… Regarding the MMT you are correct. If done only a single time, it can give an erroneous idea of the true muscle strength and endurance. In a way, the key word here is “endurance” which reflects muscle strength on multiple contractions. Many polios will have good strength on a single contraction only to get weaker on repeated contractions. Lauro S. Halstead MD

Sunny Roller then sent us information regarding two new articles. “There is lot of truth to overestimating strength with one MMT in polio survivors and that’s why in one of the new chapters coming out this year (actually one is just out – by Lippincott Williams & Wilkins in ACSM’ Resources for Clinical Exercise Physiology – Musculoskeletal, Neuromuscular, Neoplastic, Immunologic and Hematologic Conditions) look on p. 71 where I comment on doing 3-10 MMT on same muscle groups before rendering a “normal” or not diagnosis, also on p. 74 is more detailed exercise prescription contingent on both medical and history info.”

Excerpts from my reply. I do not think that repeating MMT 3 – 10 times will necessarily answer this question in all cases. There are other factors to take into account.

• What the Polio Survivor has been doing the day

before and up to the time before testing.

• Is the Polio Survivor being tested as an outpatient

or are they an In-patient where much of their

normal daily living energy is not being used – no

shopping, cooking, etc. – and therefore has more

reserves available.

• Is the Polio Survivor using more muscles to

achieve the task asked of them. .

• How much the Polio Survivor has come to terms

with their symptoms and are they being honest in

their answers about their ability and if not how

much effort they put in even when having a test

repeated more than once.

• Whether the previous history taking has been

asking the Polio Survivor Can you or How do

you? Most of us until we learn enough about PPS

and accept the changes necessary will have

replied ‘Yes’ we can get up a flight of stairs. Had

we then been asked how do you do this? We are

likely to have replied, ‘Well I only go up once a

day at night and I go right leg first and pull

myself up with my right arm as well, but I CAN

do it.

• How much testing is going to be done at one

time.

• How much rest is being allowed between areas of

testing.

• What order the muscles are tested in.

• The amount of pressure that the tester uses (for

comparing results by different testers).

• Will the person testing now do it three times, four

or 10 instead of once. There is limited time for

assessment and the testing is exhausting for both

patient and tester. I think its probable that you

would get different results between 3 and 10 repeats, and if the weakness does not show till nearer ten repeats and only 3 or 4 are done then the weakness could still be missed.

I also included another slide from my presentation showing the difference in grading that could be obtained between taking the first and seventh repeat. From the charts taken from this slide you can see the different muscle gradings that can be seen if my tests were repeated. If a single action alone is tested then the results would be and were Power 5 – normal. The newsletter if off to the printers tomorrow. So this is really hot off the press]. Dr. Maynard replies.

You have done a brilliant job of describing a real problem for polio survivors and professionals–that is, the limitations of the Manual Muscle Testing (MMT) scheme (a British invention,circa 1950,by the way). I quite agree with your comments and observations. When I say that a grade 5 muscle in a polio survivor can be exercised “vigorously”, this must be qualified that it still must be exercised cautiously – not with abandon and stubborn determination. That is why we give guidelines about the amount of discomfort to accept as reasonably safe after exercise. This actually applies in anyone, both free of neurological conditions including pps as well as the latter, although the latter are more likely to get in trouble from overly strenuous exercise.

I believe Halstead’s point is that it is appropriate to try “vigorous exercise” in grade 5 muscles of polio survivors, whereas in grade 4 muscles one must anticipate even greater caution and slower progress. It is a challenge to survivors and therapist/doctors to know “How Much”. The dialogue between them and the care to detail are most critical to success, that is increased activity-either from increased strength, endurance, both or improved well-being. The point of the recent article was to decrease the fear of exercise among more and more US Polio survivors, albeit understandable and well-founded in many cases based on experience, as you have pointed out. It is Respect for the Power in Exercise (for benefit and damage) that must be made better known. I hope these comments are helpful and will add to the discussion of this important problem.

By the way Dr. Burke Jubelt is organising a Committee to develop Practice Parameters for PPS, and will likely be addressing the topic of exercise . Best regards, Fred Maynard

Further discussions are now taking place on the following excerpt from the bottom of page 7, top 8

Exercise the limbs least affected or those completely unaffected by polio…… For instance if only the legs are affected…

Note the phrases in bold. How do we know which muscles were completely unaffected by polio? Muscles that had less than 44% damage were not seen to be clinically weak at the time of our polio. [Prof. WJW Sharrard referred to on page 9] What about the comments in many medical articles ‘also having problems in areas not thought to have been affected.’

Again I must express our thanks to all those who have been c.c.’d on this discussion for their prompt and informative replies.

So now you ask me what can we do in the UK. We are working both locally in Lincolnshire through the Lincolnshire Neurological Alliance – linking nationally through the Neurological Alliance – and the Long-Term Medical Conditions Alliance in an endeavour to improve the lot for polio survivors and others with similar chronic neurological conditions. The local work needs doing all over the country as finances are now with the PCT’s. There are 3 in Lincolnshire. If you are interested in helping with this type of work please get in touch with us.

Ideally we would all have full multi-disciplinary assessments, all the help and aids we need and be able to dip into a nice warm pool every day to stretch our muscles and get a little exercise. Even if we do achieve change in the NHS and better assessment and therapy for PPS happens it is not likely to happen overnight and all over the country. We do not have time to wait we must start now.

Try and find a supportive GP. We need to be able to provide accurate and pertinent information to him/her and it has to be concise with appointment times of 7 to 10 minutes. We must assess ourselves. Writing it down and seeing it in black and white can be hard to take, but if we are to get the best out of the rest of our

3 2

6 5

Left Leg

Right Leg

Straight Leg Raise Repeats

3 2 1 0

6 5 4

Left Arm

Right Arm

Arms – Lift Item and Sustain

lives then its necessary. Compare what you are doing now to last year, five years ago. What is changing.

You must be honest and that starts with yourself. Start by telling them about a few of the changes in your functional abilities over the last few years. A couple of photos of you showing abilities that you had a few years back but do not now, often surprises those examining you.

We can provide other visual information as to our Polio Life (See suggested charts in our Information Pack). We can ask our G.P. for some help to start managing our lives NOW whilst we wait for the inevitable months that appointments take in the U.K. Ask him/her to, or arrange for someone to, ensure you have a correct assessment of our muscle endurance.

Remember, when asked a question remember to qualify your answers, do not just say YES. A recent phone call about a DLA assessment showed how important this is. The person was asked ‘Could you walk as far as x’ – and a point outside 60 yards away was picked. She answered ‘yes’, but her carer said ‘But tell him how’. ‘Oh, I would have to stop about three times and rest to get that far, about half an hour.’

Even if you are now severely disabled by your polio, or managing your dally living is as much as you can do, there will be some ‘exercise or physical action’ that you can do to improve your suppleness. For example:- If you are now finding it difficult to reach up and lift items down from a shelf do you raise your arms up above your head at all? If you cannot go upstairs now do you lift your legs or have someone do that for you as if you were going to go up a step at all?

With a health professionals help start low, start slow, and move at your pace. Keep as supple as you can. There is no reason why your ‘exercise’ should not be split up – a couple of minutes here and there throughout the day. Remembering to ask for instruction as to when to breathe in and out as you do these exercises. So many of us stop breathing to concentrate on what we are doing because we are using extra or other muscles to complete the task in hand. If you want to share all this with another polio survivor or two – contact Wendy our Secretary.

[The following ‘Ask Dr. Perry’ provides additional relevant information. ]

Dr. Jaquelin Perry is a world renowned Physiatrist who has worked with Polios and Post Polios for many years at Rancho Los Amigos, California.

Question. What is the natural progression of postpolio syndrome? Will a person return to the same degree of paralysis that was experienced at outset?

Answer. When focusing on the natural progression of PPS it is important to understand that muscle function depends on three systems:

• Control from the brain.

• Sensation for the Periphery

• The lower motor system from the spinal nerve

cell (anterior horn cell) down to the muscle.

The third system is the most important for people with PPS because if you lose the nerve, you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease that damaged or killed anterior horn cells. This makes a lot of difference in terms of exercise, etc.

ACUTE POLIO

During the acute phase of polio some spinal nerve cells died while others were injured but later recovered. Some people had paralysis, others did not. The effects were like spatter paint. If you had a lot of paint, you had a lot of damage, while others were just touched lightly. But all survivors were left with a damaged neuromuscular system.

RECOVERY

Recovery from polio entailed all three methods of recovering function:

• Neuro recovery – between 12% and 91% of the

nerve cells that were injured not killed by the

polio virus recovered.

• Axon sprouting – New branches of the

remaining nerve cells were sent out to adopt the

orphaned muscle fibers. The result was that each

nerve was then doing 50% more work or even up

to four times as much as normal.

• Hypertrophy – The muscles enlarged

themselves up to about 400% so they could

function.

It is not known how much a survivor’s recovery was due to spontaneous nerve generation, how much could be accredited to patching by the axon sprouting and what amount was due to hypertrophy. Upon recovery polio survivors had a random disability in regard to the amount of paralysis. The amount of muscle weakness a person had was pure chance; it depended upon the amount of polio virus a person had and where it went. Some survivors remained paralyzed whilst others looked or felt normal although they were not.

RESEARCH.

During the 40’s Bodian traced the polio virus in the motor cells of monkeys. He found that polio, a systemic disease, affects 95% of these cells by either injuring or destroying them.

Research confirms that there is some obvious weakness as a result of polio. Dr. James Agre found that

• Polio survivors with no current symptoms had

only 80% of normal muscle strength.

• Symptomatic survivors had 60% or less muscle

strength compared to the normal group.

Following a four year study Grimby reported

• a normal 2% to 5% loss of muscle strength in

asymptomatic polio survivors but

• for symptomatic survivors this loss may be as

high as 13%.

A study by Grimby confirms that weaker muscles work longer and twice as hard. This research says that it is necessary to protect this overused muscle system. The muscles that are graded 3, 3+, and some 4’s are getting all the exercise they can tolerate. In order to maintain this function, these muscles must be protected from overuse.

NOW

For many, many years polio survivors have been working with a damaged neuromuscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don’t like being overworked!

Because of this overuse of the neuromuscular system, new weakness is now developing. Survivors may develop new weakness not only in polio muscles but also in other muscles that did not seem to be involved during the acute phase.

Although the amount of weakness a polio survivor develops in later life depends upon the original involvement, age is a factor. Anterior horn cells do not have infinite durability. They begin aging at about 60 years of age. So polio patients aged 70 and up have a natural weakness just from age that needs to be appreciated and put in perspective also.

ADVICE

At least half of the 1.5 million people who had polio have post-polio syndrome. Nothing has been added; PPS is a loss of function. The problem is that a survivor’s lifestyle now exceeds his physical ability.

Dr. Perry advises, Don’t push the system. She believes a polio survivor can control loss of function by controlling overuse of muscles. The way to do this is by making lifestyle changes, modifying activities, and pacing.

Polio Survivors should know their own muscle strengths and plan accordingly. A study by Agre related to exhaustive fatigue confirms that:

• A person with normal muscles will recover fully

from muscle fatigue in five minutes.

• An asymptomatic polio survivor will recover in

ten minutes.

• A symptomatic polio survivor will have partial

recovery in five minutes but then have further

loss.

So it becomes necessary to make lifestyle modifications. Dr. Perry advises

• Figure out what you dont have to do.

• Get others to do the heavy work.

• Break up work periods with rest periods

• Don’t pride yourself on working harder.

• Pain is a sign of injury and overuse so dont let it

happen.

• Figure out what causes your pain and don’t do it

again.

HOW YOU CAN HELP YOURSELF.

Dr. Perry’s general activity guideline is that a polio survivor can do anything as long as it causes:

• NO PAIN and

• NO FATIGUE THAT LASTS LONGER THAN

10 MINUTES.

Survivors can control their destiny by avoiding overuse strain. But Dr. Perry cautions: Polio Survivors who overuse muscles will lose strength.

If you are experiencing new pain, weakness or fatigue, you can help yourself now by changing your lifestyle and pacing yourself.

Reprinted from Rancho Los Amigos Post-Polio Newsletter, September 1998.

[Editors note. Changing your lifestyle includes using any aid or assistive device that saves you wasting energy. This includes asking another another human being to do something for you, or help you do the bits you cannot do, or should not be doing as it will put too much strain on your system. Save the energy you have to do more of what you want to do. Keep a smile on your face and be proud of what you achieve no matter how small. If you overuse, are in pain, exhausted and grumpy then not only do you have a harder time but so do those around you. ]

[Whilst searching on the Internet for some information Chris Salter today found an extensive 52 page booklet. ‘The Late Effects of Polio, Information for General Practitioners’ from Queensland Australia with advice for GP’s on PPS. We were pleased to find that it references the Lincolnshire Post Polio Network. More in next newsletter. It’s too long to read today.]

Why not have a cup of tea with me on my deck.

Come on out and have a cup of tea with me out on

my deck. We can watch the doves and red winged black birds argue with the woodpeckers over who gets the feeder.

Just past them we can watch a pair of Canadian Geese walk on top of the hay feeder for the cows – we can’t figure out why they want to land up there and walk about but they do – maybe you will have an idea.

On our left the flower petals are “snowing” all over the ground as they twirl down from the wild pear tree and just a little closer on the ground it is all red from the fallen camellia blooms.

We can place bets on when the first bird will take up residence in the new birdhouse Tom put in the camellia bush or we can wander around the corner of the house and watch Tom try to get the extra dirt off the blacktop in the driveway.

On the other hand, we could just bask in the sun and enjoy our tea. I know, we can race our scooters up and down the driveway!

We’ll face our “dragons” together.

Ginger in sunny California

Member Ginger Ottonello. <tomgin@GVN.NET>

In response to recent scientific developments regarding stem cells research, the Polio Society’s board of directors asked Lauro Halstead M.D. to make an informed presentation on the topic at its July 16 2001 meeting. This article is based on his presentation and several excellent reviews of the field published by the National Institute of Health.

What are Stem Cells?

Stem cells exist in every human being. Very simplistically, they can be compared to college undergraduates who have not yet declared a major. Just as most college students eventually major in business, law, or some other subject leading to a career, stem cells evolve in response to the right stimuli to become blood cells, bone cells, muscle cells or even nerve cells. This process is called differentiation and is usually triggered by a chemical stimulus. In adults, stem cells exist in bone marrow and probably play some role in the healing process. However, scientists do not yet know how stem cells repair damaged organs, or why some human organs can regenerate themselves and others cannot.

The current scientific consensus is that embryonic stem cells are more flexible, and therefore more useful, than stem cells from adults. Embryonic stem cells are pluripotent, which means that they can become any cells produced by the body. By contrast, adult stem cells are found in specialized organ tissues, and therefore may not be able to assume the functions of cells in other organs. Indeed, biologists at the University of Wisconsin recently reported that they were able to transform human embryonic stem cells into red blood cells, white blood cells and platelets – the three main components of human blood.

These developments have triggered a vigorous debate about the morality of embryonic stem cell research. Nevertheless, many private start-up companies are attempting to capitalize on this research. These companies are entering into partnerships with academic and other researchers and are looking for patient populations in which to conduct research. In general, these companies believe that stem cell research may provide a better investment with quicker returns than gene research. Although it is still very early, there have been small preliminary studies in humans with such diverse diseases as stroke, spinal cord injury, multiple sclerosis, Parkinson’s Disease, and Alzheimer’s disease.

Does this mean stem cells might one day be able to help polio survivors? A number of leading researchers believe this could happen, although stem cell treatments are unlikely to completely restore all lost function. In an attack of acute polio, motor neurons die in the anterior horn of the spinal cord, causing the ‘orphaning’ of muscle cells which, in turn, can lead to muscle weakness and partial paralysis. According to the latest polio research, post-polio syndrome (PPS) results from overuse of the remaining healthy motor neurons. Some scientists believe that stem cells might be able to replace lost anterior horn cells or help remaining motor neurons work more effectively. Either way, the stem cell might ameliorate some PPS symptoms and, perhaps, even arrest their progression. Stem cells could therefore help polo survivors feel better even if they did not completely ‘cure’ the late effects of polio.

The Board discussed the idea that stem cells research for polio should be placed on ‘fast track’. Specifically, the Board contents that while Federal funding is crucial to the ultimate success of stem cells research, the polio community should not wait for such funding alone to pursue effective treatments. The amytrophic lateral sclerosis (ALS) community has been aggresive in pursuing private funding and private research; the Board believes that the polio community should consider doing likewise.

The Polio Society will continue to discuss its role in promoting this research, and OPTIONS will continue to report on important developments. We invite you, our membership, to let us know your opinions about this exciting new field with its potential to help polio survivors. Call us, write us a letter, or use our new email address

poliosociety@yahoo.com	Our	telephone
number is 301-897-8180 and address. The Polio
Society,	42100	Wisconsin	Avenue,	NW, 20016.
PMB~106-273,	Washington	DC

Reprinted from OPTIONS. The Polio Society Newsletter, Fall/Winter 2001.

[LincPIN Editors note:- write to us with your comments which we will share with The Polio Society]

THE SHADOW THAT LURKS IN RECOVERY

MY EXPERIENCE WITH POLIO AND POST-POLIO SYNDROME By Member Susan H. Conley

Yes, I am a polio survivor, and I have always known that I was “One of the lucky ones”. I was able to walk away from the experience into a relatively normal life. My first memories are of FEAR: Fear, Pain and Feelings of Isolation. I capitalize these because I remember them so very strongly.

The scare of the summer plague known as Polio was over. It was the first week of September 1952, and I was eight years old. The school year was just starting, and I was ill. The doctor thought that I had the flu, but my mother had been reading about polio, and sensed that she should get another opinion. Overnight (it seems to me) I could not lift my legs to put my jeans on. I remember calling out for my mother and crying. My legs hurt so much. What was happening? The summer was over…this couldn’t be the dreaded polio!

My life was about to change dramatically, and as a family unit, we could never have been prepared for this experience and the effect that it would have on each of us. I can only speak for myself, and I can tell you that I was terrified! My parents drove me to the County Hospital in Los Angeles, which was about 30 miles away from our home in the San Fernando Valley. County General was where polio patients were taken at that time. This was before freeways, so it seemed to take forever to me, lying in the back seat of the car and looking out of the back window at the streetlights going by.

We arrived at the emergency room, and all I remember is the spinal tap. To say that I was scared to death would be an understatement! After the ER, I was separated from my parents, and placed in a ward in this huge hospital, set aside for people like me. The life I had known with my mother, father, and younger brother, had come to an end. I was on my own in a very strange and isolating environment.

I spent three days at County in that ward. I became afraid to go to sleep at night, because when I did, I would awaken with sounds of another patient being rushed out of the room surrounded by loud voices and banging of the metal beds against each other. Later, that person would be brought back with a hole in his throat! I believed that if I stayed awake, that might not happen to me. I also remember that whenever anything fell from the bed onto the floor, the nurse would take it away to burn it, because it was then considered contaminated. I lost a stuffed animal that way. So, when the picture I had of my family hit the floor, I cried and pleaded with the nurse not to take it away and burn it. Thankfully, she placed it in a nearby window, where I could see it but could not reach it.

I remember my mother visiting, all covered up, and unable to touch me. All I could see was her eyes. I had never before been separated from my family, and could not understand why my mother could not hold me.

After the three days I was transferred to a polio rehabilitation hospital in Santa Monica, where I stayed for almost four months. Four months can be a long time for anyone. For an eight-year-old, it is an eternity!

I was placed in a ward, surrounded by other children also scared and alone. It did not take long for me to be fit into the routines of the hospital. There were treatments at that time that I believe now, certainly saved my muscles:

The Sister Kenny treatment: staff would come in rolling a big metal bucket on noisy casters filled with steaming hot blankets inside. We would each be placed on a plastic sheet on our beds, and watch the attendant go from bed to bed, lifting the steaming blanket with long wooden sticks to wrap our bodies with. I could not understand, how it was too hot for them to touch, but not too hot to wrap around my small body.

Pool therapy: lifted down on a stretcher into the water for therapy. I could not swim yet, and had so little strength in my legs, that I feared drowning on a daily basis at first. I soon learned to trust the strong arms in the pool to keep me safe.

Whirlpool baths: I was so embarrassed to be almost naked in front of others.

Physical therapy: countless sessions with heavy weights on my legs. These were very tiring, but I do not remember disliking this part. As some of my strength came back in my legs, I received positive feedback because I had been such an athletic child before polio. It was felt that this helped me tremendously in my recovery.

Electric muscle stimulation: so frightening that I was found hiding in a linen closet one day, trying to avoid this.

The nights were the longest. Many of us cried ourselves to sleep, seemingly, day after day, and night after night. Was this to last forever? But again, I was one of the lucky ones!

I came home just before Christmas. I do not remember going home, except in a picture taken of me soon after. In it I am wearing my new Blue Bird uniform (a junior level of Camp Fire Girls), looking so very pale, with hundreds of freckles standing out next to my dull-looking, dark eyes. I look like I had been put through the ringer, obviously exhausted from the experience. Thankfully, I had a loving family, with lots of support at home. My next year was filled with intense physical therapy until my strength returned, and my activity level and stamina became that of other nine-year-olds.

As a teenager, I began to put this experience behind me, and began excelling in sports in school again. I was once again the tomboy in the neighborhood, jumping hedges, climbing trees, and first picked by the boys for the baseball games. I worked hard to appear normal, and to fit in. However, when I would overdo, and get tired, my left leg would give out very suddenly and I would fall. I remember falling in the hallway in school; papers and books would fly everywhere, and the other kids would laugh.

I would trip over unseen objects. It felt like I excelled in stumbling. At other times I felt strong and agile. I majored in physical education in college, and even joined the women’s track team for awhile. I was never a runner; I did not have any speed to speak of, but put a discus in my hands, and watch out!

So on into my adult years, I did not even think about polio. In fact, although I was quite young when I was hospitalized with polio, I had such unpleasant memories of that experience that for decades I blocked it out totally. It had happened in a different lifetime and as if to a different person. I actually had few memories of my childhood. I studied Nursing, became an R.N., and even specialized in Pediatrics for a few years. I felt as if I really identified with the children and their separation anxiety. I believe that I was of some help in that way. So I developed my career, married, gave birth to two children, and divorced, all in about ten years. Stress had become a major factor in my life, and I did not handle that well at all. I seemed to internalize everything, never feeling good enough to the task at hand, yet always striving toward goals. Yes, I fit into the mold of the Atype personality, so common in polio survivors.

Then, in my forties, I began to limp when I became tired. It seems that I was beginning to drag my left leg a little again, and began to tire more easily. In 1988, at the age of forty-four, I began experiencing shooting pains down my left hip and leg, radiating from my lower back. It became painful to lower my left heel to the floor when I walked.

One day, at the hospital where I worked as a Nursing Administrator, I had the opportunity to hear a physician, an orthopedic surgeon, speak on the topic of Post Polio Syndrome. I was so very fortunate to have gone to that lecture. I spoke to him afterwards, then called for an appointment to be evaluated by him for my leg and back pains. The most traumatic moment of all, was when I was on the exam table, with two physicians leaning over my legs, looking at my feet, and mumbling to each other.

Suddenly, I was eight years old again! I was frightened as I flashed back to all of those feelings I had when I was a child, and was separated from my family. I felt overwhelmed as the doctor scheduled surgery and explained what was happening to me. I cried for two days after that, and could not sleep for many days. All that I had stuffed deep down in my past, far behind me, came flooding back. Insecurities abounded.

I soon was able to put things into perspective, and again moved on with my life. The surgery, and a support in my left shoe, seemed to manage the problem for a few years.

Then, three years ago, my tripping and stumbling began in earnest, and again my left leg would give way without warning, and down I would go. Just like back in school 35 years before. Then it happened. I fell down a few stairs when my leg gave way once again, badly injuring my right knee. That was my “good” leg. The injury required surgery and many weeks of physical therapy. I talked to my present doctor about Post Polio Syndrome. He believed that I needed to exercise more to strengthen my weakened muscles. He did not seem to know about PPS.

By then I was using a cane for support whenever I was outside. I began doing my own research, getting a computer for that specific purpose, finding local PPS support groups, and discovering wonderful newsletters. I was not alone. I was not crazy and just feeling sorry for myself. I was going to be okay. I could do this! My life was changing, and not in a way that I would have chosen. Who knew that we would have to go through this again? I grieved for awhile, but I am an adult now, and I have choices. I can educate myself, and learn the best way to cope with this. This certainly is the challenge that I will deal with for the rest of my

life. I still believe that I am one of the lucky ones.

I came to the conclusion that I needed an expert medical opinion and evaluation. I had read about the Post Polio Clinic at Rancho Los Amigos Rehabilitation Hospital in Downey, California. I had read articles by Jacquelin Perry, MD, and was already receiving the Rancho PPS newsletter in the mail. I called, and waited the requisite six months for an evaluation. I will be forever grateful that I ended up at that clinic, being evaluated by Dr. Perry. By that time, fall of 2001, I was significantly weakened on my entire left side. Even my right arm and leg were measurably weakened. Dr Perry and her professional team were very understanding and supportive of the effort my life had become. The weakness and the chronic fatigue were now having a major impact on my life. I could no longer walk around the block without major effort. I tired quickly when gardening. I became exhausted and irritable at the end of each day. I was aging before my time, and before my eyes.

Dr. Perry ordered a brace for my left leg, and talked to me about resting three times each day, and to pace myself to lessen the demands in my busy life. It was suggested that I sit or lean on a stool while preparing meals in the kitchen, and to feel free to ask others in my life to help me. I have found that there is a lot of gray area between dependence and independence that I need to explore further. I see this as another challenge in my life; to accept my physical limitations, as well as to do whatever I can to pace my activities, rest frequently during the day, and stay as optimistic as possible.

So, I wear my brace, use my cane, and have even added “Scooter” to my life recently. Scooter is an electric scooter that I find already is worth its weight in gold. Wearing my brace has removed much of my daily pain, and along with my cane, has kept me from falling. Using the scooter is not only a godsend when I have to travel distances “by foot”, but I find that riding it is a lot of fun. Actually, I feel very independent when using it.

I cannot underestimate the importance of a support system, as well as education in PPS, and a doctor who understands PPS and can help me. As my life evolves, I am energized by these changes. The more I know the more I grow, preserving the nerves and muscle strength that I have left. I am ready for the next chapter in my life.

Susan H. Conley <colbys@pineknot.com>

P.O. Box 1825, Big Bear Lake, CA., 92315, USA

Groceries chosen and delivered with NO energy output except fingers on keyboard! I’m thrilled!!

A TALL “Peapod” truck backed into my driveway (poor tree branches), and out came a TALL driver (6 foot 8), who proceeded to bring into the house all the groceries I had ordered, plus a big box of strawberries as a first-timer gift.

I will do this regularly!! All I had to do was put them away. And I found I did a much more thoughtful job of shopping online than I would have in the store. Easier to compare prices, find the brand. No groping around, no forgetting something and backtracking through all the aisles. I went back over my order a couple of times and added and subtracted items. The running total shows up in the top left, so you always know what your total’s going to be.

I learned tonight that if I have coupons, I can give them to the driver, and the value will be deducted from my next order. All the specials are marked. All the sale items are marked — online, that is. You can get the category of food you’re looking at sorted any way you want: by brand name, by size, by price, alphabetical, by calorie count or fiber count, by total price or unit price. Now that I’ve done it once, I know better (for instance) how many frozen dinners will fit in my fridge (more than I ordered). And my one half gallon of milk looked awfully small. Next time I’d get more. And now I’m going to bed! Gotta rest up from putting it away, and dream of fresh strawberries for breakfast tomorrow! Why not see if there is a store in your area that does this.

Jeanne – SEACAIRN@aol.com

Our PPS Get-together by Life Member Sue Karnes.

Some background info. I emailed the LincsPPN, talked with Hilary, joined and she suggested that I also join the SJU Polio email list. This was in May of 2001, being at the denial, depressed, etc. state of mind. Since May I’ve gained some very special friends via the list. During our emailing back and forth and talking on the phone with each other we realized that some would or could be travelling through Georgia during the winter.

My mind got to reeling. These dear friends were going to be close by and had helped me so much in such a short time. We started talking about a possible get-together and one day I decided to tell them that the Lazy Acres Bed & Breakfast, jokingly calling my house, was taking reservations for any PPSers who would be near. It was planned for January, but had to be postponed due to snow. At which time my heart became so heavy, but everyone rescheduled for February.

I was so excited it seemed the day would never get here, but it did and it turned out to be the best time of my life. There was so much love, laughter, joy, etc. Everyone was telling the others, ‘Oh, you are nothing like I had pictured you to be’ and we’d all laugh. We all just fell into a family as if we’d been meeting like this for years.

For me it was awesome, because for the first time since my original bout with Polio and now my PPS years, no one asked me what was my problem. They didn’t joke about wishing they had a scooter or how lucky I was to have a power chair, etc. I realized that by the end of the first day this was the most relaxed and enjoyable time I had had in years. Then it hit me that we were all alike and didn’t even notice each others PPS difficulties. If I went to get up and moaned no one jumped up to see if I was ok and told me to stop being such a baby or to get tougher. For the first time in my 54 years I didn’t have to work hard at being a passer when I had always been on edge. I would hang to the outside of gatherings, feel as though I was nothing more than an inconvenience or the joke between others. I was tired of trying to explain what PPS was only to have them reply “well, you certainly don’t look like you’ve got a problem.” For the first time I truly felt “normal” and that we were all just part of one big loving family.

Know that until I found the list and the wonderful people on it, I had become almost completely home bound and thought I was perfectly content to stay at home. Would only see my girlfriend – who is my house cleaner and shopper – on Fridays and Sunday when she takes me to church and to bible study. The get-together has rejuvenated me, there is still life out there to enjoy. I want to go to the PPS meetings, conferences and reunions now. I have already signed up for the North Carolina PPS Conference in late April. I have learned from this meeting that all I need to do is to plan it carefully, fitting in rest times, not be embarrassed at using my electric chair, oh and knowing that when I get back I will be exhausted for a few days but with a big smile on my face and wonderful memories.

I could go on and on, but the one thing I’d like to pass on is for all the PPSers out there, if at all possible, to try and meet up with some other PPSers. Life is so very short and the difference this has made to me is incredible. My daughter sent me an email to pass to the others thanking them for visiting.as we are now able to talk more openly about all that is happening. Love to all my friends out there and Thankyou, this was the greatest gift I’ve received in many years. Sue Karnes <SEKARNES722@aol.com>

The following two emails – printed with permission – are informative replies to discussions taking place on the St. Johns Polio Email List.

I’m quitting work – Roger Brown, Australia.

This has been an interesting discussion as I also am in the process of a decision about my working future. Currently I am on extended long service leave from my bank lending manager employment (half pay rate) – once that concludes I will be within a few months of being able to retire on perfectly adequate (indexed) superannuation.

Why did I decide to consider early retirement from employment that provided both enjoyment and success?

Well five years ago I would have disregarded any such suggestion. I was at that time working hard and having little difficulty maintaining all my music activities including two hours organ practice at 4am daily). All that suddenly changed when the residual (and very severe) effects of a seemingly minor lifting incident years earlier left me writhing in pain and virtually unable to move. (This was polio related of course, in that I has attempted an unwise lifting task – given my lack of upper body strength due to polio.)

Surgery was successful and I was back at work within three months but rehabilitation was tiring and reduced my overall effectiveness. It was not for two years that my leg strength started to approach normal.

At about that point, and still feeling very tired and stressed (but trying very hard to cope with work, rehab and a very active round of music activities) I was diagnosed as having type 2 diabetes. Although being a non drinker and smoker and not overweight reduced the lifestyle adjustments then required, this obviously complicated matters.

My work performance at that stage had fallen away. I was finding it difficult to maintain intensity and cope with stress and my colleagues were noticing the change. Things needed to change.

One solution would have been to curtail outside interests and activities. This is a strategy often used by mid level employees as pressures mount but is I believe an unwise choice. So many employees, after shutting down outside activities then find that in the event of retirement, redundancy or other inability to work, there is nothing left in their lives. This does nothing for longevity – especially for men.

I was also determined to ensure that I retained the time required to look after my health and fitness. Recovery from back surgery had required a very determined effort at rehabilitation. Diabetes management requires much the same commitment to regular exercise. I was determined not to let these matters slip as the consequences of doing so are quite severe.

It was clear I needed a break to cope with these factors – hence the leave arrangements I have now made.

Oddly enough the twelve months prior to commencing leave have been the best at work for some time. That was probably partly due to the knowledge of my impending break but it also had a great deal to do with the quite sudden change in energy levels once diabetes control had been established. I just had not realised how much this had affected my ability to cope with work and with stress. In addition to this, my general fitness is now much

better than for some time (apart of course from the upper body effects of polio/PPS).

So what of the future:

1. Although I enjoyed work and the associated responsibility I have not missed it in the least. 35 years was quite long enough thank you.

2. This is partly due to my having many outside activities and commitments – mostly of a musical nature. Readers of my web page will probably realise that but for polio, music would have been my career.

3. What occurs once my current leave concludes is to some extent up to my employer. But I think it highly unlikely I will want to return to work.

And out of all that, what is it that I want to pass on to others?

1. Your health is the most valuable asset you possess. If your work is affecting your health then work needs to be modified or even abandoned of possible.

2. I think it is essential to have other pursuits planned and active. These need not be, and for many cannot be, physical. But mental activity is essential for well being – so is self esteem. It is the people who have put their whole being into work who come off worst when work is no longer possible.

If you are working now, plan ahead. Plan the activities which will sustain you in retirement. Good luck Roger Brown <rbrown7@BIGPOND.NET.AU> http://rogerbrown.tripod.com

I elected to have a trach. I have no regrets!

I had pulmonary failure in 1984. After trying several non-invasive options I elected to have a trach. I have no regrets!

For several years I used the vent only when lying down. Now I use it almost full time. I have one vent next to my bed and another vent on my power chair.

Having a trach and using a vent requires some lifestyle adjustments, but it does not mean the end of an active life (sometimes I wish my life were less active).

Four members of our seven member board of directors have trachs. All continue to remain active members of their communities. All live at home. All have the ability to speak. And all are in good health.

I strongly believe that your friend will have more energy, regain a sense of well-being, and quickly learn to deal with the peculiarities of having a trach.

I’ve said this before, but it might bear repeating: When it gets harder to read the fine print we get glasses. If our hearing is impaired we use hearing aids. If our legs are weak enough we use a wheelchair or scooter. Is it such a leap of faith to believe that when our pulmonary function is impaired we should start using some form of ventilatory assistance?

A trach is the most efficient way to move air in and out of our lungs. It doesn’t mean the end of life. Actually, it’s no big deal.

Richard Daggett, President

Polio Survivors Association, USA.

To: linpolio@LEGEND.CO.UK CC: Vonnejo@aol.com

A GREAT LADY’S CENTURY OF ALCHEMY

She was a great lady Britain’s Queen Mum (Elizabeth) epitome of grace and dignity beloved for a century of pomp and pageantry white roses signal the end of her rein of majesty and this great lady’s century of alchemy.

(an American’s POV might not be politically correct)

Weird Things You Would Never Know!! > > > > > > > > Butterflies taste with their feet. > > > > > > > > A duck’s quack doesn’t echo, and no one knows why.

Depressed or Distressed?

Over the past months, talking with people with polio, and specifically the late effects of polio, I’ve heard the word depression again and again. Last week I learnt of a friend of a friend, who had just been diagnosed –‘she’s very depressed’ was one of the introductory comments.

But I wonder how often we misuse this word. I have been through black periods since I began to recognize symptoms of unusual fatigue when I was 16. But I’m not sure whether I’ve ever been clinically depressed, and writing the following I don’t wish to upset anyone for whom depression is a reality. However, I wonder how often we confuse the word depression with what our bodies are trying to tell us.

When we get tired, and run on empty for long enough, our bodies, with their failing nerve endings have to find a way of telling us. We have, very successfully, trained ourselves to ignore the usual fatigue and pain messages; in order to continue as we feel is necessary, if not normal. So, when tired we switch off the message.

Weakened muscles, function increasingly less efficiently, and eventually stop working. Neighbouring muscles and trick movements then take over. These muscles, unused to the acquired function, begin to fail more quickly. At this point we are probably aware of pain in the original muscles, and the ‘trick’ muscles. So, the muscle balance in our bodies becomes affected by one set not functioning. We are prone to fatigue anyway, and the imbalance sets off more fatigue as the body is stressed by coping with the extra strain.

Perhaps it is a dropped foot that has got overused, attempting not to fall over it, we overuse knee and hip muscles. There is pain in ankle, knee and hip, and this sets off back pain, potentially pain in the other leg, and maybe spasms elsewhere in back and neck.

So, we have fatigue, causing muscle stress, causing more fatigue, and putting more strain on us. Pain, as part of its natural patterns, lowers our mood. Serious pain can remove the capacity for clear thought, even conversation.

Our bodies are shouting at us to stop and rest. We insist on ignoring them, and wonder why we grind to a standstill. Often, we only stop because the stress we are imposing becomes manifest in a physical disorder, gall stones, a collapse, heart problems, even some cancers are stress induced.

We feel awful, we can’t cope and think we are weak, useless and lazy for desperately wanting to sleep… that’s if we can cope with the levels of pain we’ve caused. All we can think about though, is doing more, and coping and okay, achieving.

But we’re not depressed, we’re distressed.

The golden rule is ‘ Pace yourself, avoid fatigue, and avoid stress’.

We have to learn to cherish our bodies, and listen to what they are desperately trying to tell us. We have to stop the constant torture we’ve imposed on ourselves. Forced to keep up, cope, and retain the ultimate stiff upper lip, we have instead to impose a strict regime of love and care. People with ME are often advised to take 2 x 30 minute rests during the day. These are taken lying down, without the stimulus of TV, or radio, or reading matter, although relaxation tapes are allowed. To fit this into one’s routine takes discipline.

We have to build in the expectation that our damaged nerve endings may take up to ten times as long to recover from trauma, and ‘big-fatigue’ counts as trauma. You won’t get over it in a day, it may take a week where it once took a day, sometimes much longer.

But start to listen to your body, keep a journal if it helps, to remind you of what works with what exertion; to remind you of what exertion is stacking up

Let us learn to cease the discipline of whipping ourselves, and learn the discipline of self-love instead. The distress doesn’t disappear entirely, there will be plenty of ways to berate ourselves, but we will be more understanding, and gentle.

Val Thorne. Now living near Reading. Age 46, polio October 57, Leicester. <valmthorne@hotmail.com>

BRISTOL AREA – SECOND MEETING.

The second meeting of Polio Survivors in the Bristol Area is being organised for lunchtime either Monday 13th or Monday 20th May. Venue to be arranged depending on numbers will be somewhere near the M5/M4 junction. Hilary will be passing by on both dates on her way to and from Devon. Apologies from us both that this cant be a weekend but we both have parents birthdays either side of these dates. If you would like to join up with us – even if you cant make this meeting – please get in touch with me by phone or email. Phone 01594 530670 mornings or email <MirRah2@aol.com> Up to 7 years ago I was a Piano Accompanist, Duetist, and fully qualified Piano Teacher. Anyone else with similar interests?

Mary McCreadie.

Question: Can you give me some advice on diet and PPS?

Susan Creage, a research fellow at the Post Polio Institute (Drs. Bruno and Zimmerman), has found that those with PPS seem to do better on a Hypoglycemia Dietary Plan. In order to keep blood sugar as constant as possible you divide your total calories into 5 or 6 meals a day (usually 3 “meals” and 2 or 3 healthy protein snacks).

Dr. Bruno: “We aren’t recommending one of those ‘all protein, no carbohydrate’ diets. We aren’t recommending a ‘diet’ at all, but a method for eating healthy every day. We suggest 16 grams of protein at breakfast; that’s about 1/4 of the daily protein requirement (70 grams) for a 150 pound person. (Always check with your doctor, especially if you have kidney problems, before changing your diet and ask to have your cholesterol measured at your yearly check up.)”

A hypoglycemia dietary plan is an exchange type diet that can be modified to meet your needs as well as likes and dislikes. It is good to have this explained by a nutritionist. It is not difficult, but you need to know how to set up the foods you need each day for optimal nutrition. It’s what every good diet is based on. There is also a good one on the internet: http://www.itlnet.net/users/k2l/diet/diet.htm

I hear many people talk about losing weight with high protein and fat diets, no carbs, and others. These “diets” can be dangerous! And, with our Polio compromised bodies needing more nutrients, we have to be even more careful. All you probably need to do is make a few small changes to your dietary plan. Bruno and others recommend a balanced diet of protein, complex carbohydrates, and good fat choices. They are all part of a good eating plan of real foods: all 3 are necessary for optimal nutrition.

We need to watch the simple sugars and eat more of the complex carbohydrates that are in the whole grains. Remember, too, that fats are not all equal: we should be eating more omega-3s (fish, olive oils and others) than the omega-6s. With the typical American diet, many are eating way too many of the wrong fats, and other foods. And, sadly, as I travel I see fast foods and other poor dietary choices being adopted in other countries, too.

One more caveat from the professionals is to never skip meals. If you can’t cook or don’t have the time, protein bars can be helpful as an occasional replacement (read labels). Learn to make smoothies with protein foods (like soy powder) and fruits or 100% fruit juices. Our Polio damaged bodies often don’t have the ability to store nutrients that others have. Eating well is an easy way to be good to ourselves.

Recommended Book: “Power Nutrition for Your Chronic Illness” by Kristine Napier, MPH, RD (1998). Although there is no section specifically for PPS, Kristine has lots of information that relates to many chronic conditions. The author is a Registered Dietitian who lives with and manages her own chronic illness. The second half of the book is full of great recipes that are easy, nutritious, and tasty!

Hint: Look for books at used book shops (addall.com or half.com) or on sale at the bookstores, or from your library.

Question: I have high blood pressure, as well as PPS, what should I be eating?

“Dietary Approaches to Stop Hypertension” (DASH) was developed from a clinical study. The research was funded by the National Heart, Lung, and Blood Institute (NHLBI), with additional support by the National Center for Research Resources and the Office of Research on Minority Health, all units of the National Institutes of Health. DASH’s final results appear in the April 17, 1997, issue of The New England Journal of Medicine. The results show that the DASH “combination diet” lowered blood pressure and, so, may help prevent and control high blood pressure. The “combination diet” is rich in fruits, vegetables, and low fat dairy foods, and low in saturated and total fat. It also is low in cholesterol, high in dietary fiber, potassium, calcium, and magnesium, and moderately high in protein.

This DASH eating plan is based on 2,000 calories a day, but it can be changed to meet individual requirements. Depending on your caloric needs, your number of daily servings in a food group will vary: http://www.nih.gov/news/pr/apr97/Dash.htm

But, any good dietary plan can be made “heart smart” by choosing lower fat foods like low fat dairy and watch those saturated (animal) fats, and cholesterol to reduce your risk of heart attack (and certain types of cancer as well). There’s more information on fats as well as other nutrients on this website: http://www.pueblo.gsa.gov/cic_text/food/foodpyramid/main.htm

Jann Hartman, BS, Nutrition Educator, Baltimore, MD

More PPS Nutrition (basics and links to other WebSites): http://www.geocities.com/arojann.geo/ ppsnutrition.html

Question: My doctor says I need to lose weight, how can I lose weight when I have PPS?

First off, just losing weight isn’t the answer to all our problems with PPS. While less weight is better for our bodies, starving ourselves starves our Polio bodies as well. And, they can ill afford it. Don’t ever go below 1,000 calories or you won’t be providing the basic nutrition your body needs. Most dieters lose

For anyone looking for an interesting hobby.

One of our members has found a time absorbing hobby in making Greetings Cards. She has successfully sold these at various fairs and stalls in her area and feels that others that are housebound would be interested in doing something like this.

She has sent me various designs which can be copied, and which would cost 10p per sheet. The cards are all made from various bits of materials, scrap paper etc., with the card itself, glues, scissors etc., being bought from craft type shops, and I must say they do look really effective when complete. You can also join a card making club, for which she has the information. These work out quite inexpensive to make but, I would imagine, make an absorbing hobby for people with some creative ability.

If anyone wants any further information regarding making these cards please contact Dorothy Moss on 01925 823343 or email <DorothyMos@aol.com>

For anyone needing a couple of days break.

Diane Newman of the Peterborough MEET (ME Group) has offered our members the use of their twoberth caravan which is situated at Huntingdon Marina. It is only a small one but the idea is that it could be used for a short break by people who need to have “a couple of days away from it all.” Unfortunately it is not suitable for people totally confined to wheelchairs as access into the caravan could not be gained. There is only a chemical toilet in the caravan but the toilet block is close by.

Although I have not been there myself, I believe Huntingdon Marina is a quiet and lovely place to be. Time can be spent just watching the traffic on the river. There is a large Harvester pub which serves food and there are other places close by. There are also good food shops in town which will also deliver to the caravan. The local bus station is a few minutes away and the bus itself from Huntingdon stops outside the Marina. There are also fishing facilities.

The cost is £15 per night. If anyone is interested then please contact Diane. {Contact Details next item]

12th May 2002

ME Awareness Day Cathedral Square, Peterborough, Cambs. BALLOON RACE 12.00 to 3.00 p.m.

This event is to raise awareness of ME but also as a prelude to the September 18th 2002 launch of the Cambridgeshire Neurological Alliance.

In attendance will be John Holt – West Berkshire Neurological Alliance, Dr. Elizabeth Dowsett – an Internationally renowned specialist in ME and PPS [Life Member], Dr. Derek Parkin – a retired ME/CFS Specialist from Lincolnshire who ran a specialist clinic at the Pilgrim Hospital, Boston for 12 years, and Hilary Hallam, your Chair. Several local celebrities will be in attendance, Cllr Charlie Swift and some of his colleagues and members of a disability group.

This is a fun event and a chance for people living in the vicinity to meet up. We have access to the Guildhall where tables for information can be set up. There will be a quiet room available for anyone needing to crash out for a while.

If you would like to join us on this day then please give me a ring so that I can send you a map showing parking etc.

I look forward to meeting more Polio Survivors on this day. We have so much in common and the sharing of information with allied support groups and campaigning together is helping us make faster inroads towards our quest for medical help.

Diane Newman, Group Contact,

Peterborough ME/CFS Self Help Group MEET [ME Empowerment Together] 22 Glebe Road, Old Hetton,

Peterborough, Cambs, PE2 8BG.

01733 552872

<mecfsmeet@hotmail.com>

OBITUARY – Mrs. Nancy Robertson, M.B.E.

We received the sad news that Mrs. Nancy Robertson MBE of Harrow, Middlesex had passed away in February.

The Committee have sent condolences to her family on behalf of all members.

THOSE SHOWING WITH / IN BETWEEN ARE IN TWO PLACES.

PHANTOM / OF THE OPERA	CAROUSEL
GIGI SEVEN BRIDGES FOR / SEVEN BROTHERS HALF A SIXPENCE MY FAIR LADY OKLAHOMA	MAMEHELLO DOLLYMISS SAIGONTHE KING AND ILES MISERABLES
BRIGADOON THE DESERT SONG FINIANS RAINBOW THE MUSIC MAN SWEET CHARITY CABARET ANYTHING GOES.	SHOWBOATGUYS AND DOLLSFLOWER DRUM SONGPORGY AND BESSSTARLIGHT EXPRESSCATS

ADVANCE NOTIFICATION FOR YOUR DIARY LINCOLNSHIRE POST POLIO NETWORK

Annual General Meeting and Afternoon of Speakers

will be held on Saturday 28th September 2002 in Lincoln Further information – Next Newsletter.

Dawnbusters Rotary Club Big Bear Lake, California U.S.A.April 17, 2002Dear Hilary Hallam,We at Dawnbusters Rotary in California, are pleased to donate to the Lincolnshire Post-Polio Network the enclosed check in the amount of one thousand U.S. dollars. Our hope is that this will assist you and your committee to fund the LincPIN newsletter, freeing up some of your funds to put toward other services that your group provides in aiding individuals around the world in learning more and living with Post Polio Syndrome (PPS).As you may know, Rotary International has been working alongside other organizations toward the goal of eliminating Polio throughout the world by the year 2005. We in our club actively participate in that effort through Rotary’s Polio-Plus Program. We recognize that the long-term effects of polio will not end in our lifetime. Post Polio Syndrome has recently come to our attention, and we have a strong interest in spear heading efforts by Rotary toward assisting polio-survivors cope with the effects of PPS. Through one of our members, we have learned of the Lincolnshire Post-Polio Network and your good work in assisting with the education, identification and treatment of PPS in a healthy and positive manner.Our club is in the process of developing our own Post Polio Project in an effort to assist in shortening the learning curve of PPS, and in the interim would like to contribute to a group that is already doing a lot for this cause.Dawnbusters Rotary is one of two Rotary clubs in the city of Big Bear Lake, a mountain community in Southern California. We are a club of 38 business people who work with the citizens of our community to support the Bear Valley community through a number of activities:• Operation Bootstrap: helping women helpthemselves• Annual Holiday Dinner: serving 500 seniorcitizens in our community• Life to Life Donor Program: recruitingpeople to join the National MarrowDonor Program• Helping Hands: assisting with home repairsfor local seniors and the disabled• High School Scholarships• International Exchange Student Program• Contributions and support of local youthactivities.• Reach For A Book Program: donatingbooks to the local elementary schools in thename of program speakers at our weeklyclub meetings.• Helping others in need as requested.Each year we donate to an International Project, working with Rotary Clubs in other countries. This year it was funding the drilling of eight fresh-water wells in India.Post Polio Syndrome is of growing interest for our club, and we are pleased to begin our effort in this area by contributing to the work of the Lincolnshire Post-Polio Network.Yours truly,Sheila Hamilton, Club President and Susan Conley, Co-Chair, Post Polio Project.

BIRTHDAY CONGRATULATIONSMrs. Kathleen Burrell in Lincolnshire on the Occasion of her 90th BirthdayCongratulations were sent on behalf of the Committee and Members. Also thanking her for the donation of monies she had received as gifts.

A THOUSAND PLUS THANKYOU’S

Linc Pin Volume 3 Issue 10 Read More »

Linc Pin Volume 3 Issue 7

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 7 – October 2001

WebSite – http://www.lincolnshirepostpolio.org.uk

Editorial by Hilary Hallam – page 2

Reports from our Annual General Meeting – pages 3 – 6

From our AGM Speakers

Managing your Lives by Dr. E. G. Dowsett and Alexander Technique by Teacher of Alexander Technique and Homeopath, Diti Ravner

pages 7 – 10

A short perspective on the Alexander Technique by member Mary Kinane

page 10 to 11

Have Vent Will Travel by member Christine Horrobin – pages 11 to 12

Eating Well Easily – Part Two by member Vivien Holland – page 13

Poliomyelitis ‘History’ Summary. – Part One by member Phyllis Hartke, President of San Francisco Bay Area Polio Survivors.

pages 14 to 19

Gaps seen in the Evacuation of the Disabled and The fire alarm sounded at 1.30 a.m.

page 19, cont. on page 24.

Rest, Pacing and Timing by Grace R. Young, MA, OTR Letters to the Editor

page 20

What Treatment do you recommend for muscle pain? Reply by Dr. J. Perry. A Real Pain in the Neck, An Editorial by Charles N. Beaton

page 21

RUKBA, The Royal United Kingdom Beneficent Association and their 60-Wise Booklet

pages 22 to 23

MEETINGS INFORMATION – Contact & Membership Information – page 24

Editorial by Hilary Hallam.

As we have quite a few American members I would like to add our condolences to those which have been expressed from right across the world. Chris Salter and I were talking to one another on the phone on 11th September when the TV suddenly went over to the News Flash and we watched the scenario unfolding before our eyes. We know polio survivors living in that area and are pleased to tell you that all and their families are well. Jo Kelly and her husband Kevin – who Richard and I met earlier this year when they were in Florida – were on holiday in Crete and were unable to get home for a few days. Kevin is a New York Fireman. They were able to keep in touch with many of us from an Internet Cafe and Jo reported their safe arrival home via British Airways first class and that Kevin left for work within minutes of arriving home. He lost many work colleagues.

A newspaper article caught my eye regarding a disabled lady being saved from the 68th floor by two men who strapped her to a small wheelchair and carried her down. I thought that maybe we should once again consider what we would do if we had to evacuate a building we were in, and had cut and pasted the article to my temporary file for this newsletter. What I did not expect was how soon this would become even more important. At 1.30 on Saturday night at the IBIS Hotel where some of our members were staying the fire alarm sounded – see page 19.

Our Fourth AGM I am pleased to say was a success with a positive move towards planning for the future. Included are reports from the meeting which will give you some idea of our plans with more in the next newsletter. Please contact us if you have any comments to make or would like to be involved in any way. Involvement need only be as much as you can give and of course we understand that there are times when even this might become impossible, it happens to us as well, so dont let this deter you if you would like to help.

The next LincPIN will be our Xmas Issue. Letters to the Editor are welcomed for all issues, by post and email or if its just a question you want to ask then give us a ring and dictate it over the phone.

RUKBA – The Royal United Kingdom Beneficent Association – Helping elderly people stay independent (and the disabled over 40) – of which I am an annuitant – recently sent me an excellent booklet called 60-wise. It is full of useful information and contact details of organisations that we are likely to need as we get older. With their permission I include a two page letter giving some information about their organisation and their offer to send UK members a copy of the 60-wise booklet if you contact them directly.

Lincolnshire Neurological Alliance Meeting – Lynn Hobday and I attended this meeting. The Neurological Support Groups of Lincolnshire working together and speaking with one voice. 5% of the population have a neurological condition and this is a much better figure to work with when you want Health Organisations to listen to you and make changes. This meeting dealt with in-house matters of the constitution etc. At the next meeting on November 8th, Sue Riddell will be speaking on the NHS Plan for Neurology and listening to a presentation from us on our collective problems.

Lincolnshire Modernisation Council – As members of the LNA Lynn Hobday and I attended this meeting. This was to learn more about the new organisations being set up where patients have a voice. It was also to discuss seven areas of shortfall where Lincolnshire will not be meeting government targets in April. Of note – which we have put in writing to the Health Authority – is that at the two day planning meeting of health professionals across the board Neurology was not discussed. Therefore it was not on the Agenda for this meeting. We attended the workshop on Orthopaedics where we were able to bring up the point that many of our members incur double or even treble waiting times by being referred from GP to Orthopaedic, some then to Rheumatology before being referred to a Neurologist. We put forward the idea that if the GP sent patients for x-ray of the symptom area that these could then be triaged to the right Consultant for the first appointment. We also attended the workshop on Work Force and learned that there are shortfalls in nearly all fields of health workers. We informed the meeting that there are only 300 Neurologists in the UK, the lowest per capita for Europe. We do not have a Teaching Hospital in Lincolnshire which makes it less attractive promotion wise and we learned that some posts being advertised have not attracted even one reply.

Meeting of Regional Neurological Alliances – I attended this meeting in Manchester of representatives of other Neurological Alliances. In attendance are Nikki Joule, the Policy Officer of the Neurological Alliance and it is lead by Maureen Kelly who has wears many hats, the NA, the Merseyside NA and is based at the Glaxo Neurological Institute in Liverpool. We meet twice a year and share information on what we are doing and achieving and are able to take back to our local groups some great ideas with the format already planned and workable.

Meetings Info on BACK PAGE.

Lincolnshire Post Polio Network Annual General Meeting

Saturday 29th September 2001 Ancaster Day Centre, Boundary St., Lincoln.

Chairman’s Report.

Good morning and welcome to the 4th Annual General Meeting of the Lincolnshire Post Polio Network.

As I started this I thought back to November 23rd 1995 when I heard for the first time from a Consultant that there were late effects of polio and that there were reasons for the symptoms that had started following my fall in October 1988. Seven years of being told you are fine, knowing you are weaker than before, falling more often, dropping things, suffering memory problems. MS and Alzheimer’s was what I thought I had.

Imagine the relief that day when I read two articles about PPS. I was not mad, I was not alone, Hurrah…. I never imagined that there would be brick wall after brick wall still to get over because of the lack of adequate education to health professionals on polio and its known late effects. Again here is another condition where the support group and its members know more than most health professionals.

So how far have we come since that day. For most of us still struggling to get adequately assessed, diagnosed, advised and provided with appropriate aids and treatment it seems not very far. Your biggest complaint is that appointment after appointment is unproductive and a total waste of time and money.

However we have taken small steps forwards. We are trying to stop the incredible waste of NHS money in inappropriate and unproductive appointments. We are talking to all manner of Health Professional bodies about the fact that the age old form of assessment looking for weakness, Manual Muscle Testing, is subjective, it does not test pattern of movement, allow for substitution of muscles, or weakness on repetition or sustaining of the action tested. Simply this method of assessment does not confirm what we are saying experiencing and we have had enough of being disbelieved.

Although we are working nationally and in fact internationally we need to work locally. Lynn Hobday and I first contacted Lincolnshire Health in the middle of 97 and have continued in our efforts to get round the table talks. The government decreed that patients must be part of discussions. As the LincsPPN we did not represent enough people but as the Lincolnshire Neurological Alliance we are speaking on behalf of 5% of the population and with one voice. Now we are being listened to.

There is no-one championing neurology in Lincolnshire. We are a rural county without a Teaching Hospital or Neurological Department. At a recent 2 day meeting of Health Professionals discussing the shortfalls that are likely in the government targets for April 2002 Neurology was not even discussed. This week at the Modernisation Council Meeting Sue Riddell offered to come and talk to the LNA at our meeting on Nov 8th about the NHS Plan for Neurology – and to listen to a presentation from us regarding our problems and the changes we think could be made to improve the situation. So we hope to give you more news after this.

I am present working on a pre-evaluation self assessment form and the local Rehab Department and other Health Departments have agreed to look at this and trial it. The idea behind this – which is in draft form and much larger than it will end up – is that we give the information visually and in table form of the changes that have happened to us in recent years. If anyone would like to help with this then please let me know. I will then be working on a Manual for Assessment of Polio Survivors and Dr. Dowsett has kindly offered to help with this.

Your committee need more help, especially from Lincolnshire Members, although work needs doing all over the country and we would be more than happy to talk to members in other areas about how you can do what we are doing locally.

We need people to attend meetings of the Lincolnshire Association for Physical Disability, Disability Lincs, and other related organisations. We are all struggling with our own problems but if we hadn’t given up our time so far to achieve what we have the light at the end of the tunnel would be further away.

Your committee has worked hard this year, it is now coming together with a plan for the future for the benefit of all members. We need to make changes to the Constitution which Janice Eary will explain. The Lincolnshire Post Polio Network is internationally known among the polio world. We need to ensure that the work

continues and the services we provide are improved.

We have run from hand to mouth till now with all the work being done voluntarily. All the equipment, apart from the computer for the WebSite purchased 3 years ago by three firms in Florida, and most of the software, repairs and upgrades has been personally funded. Very little has been paid in the way of expenses.

I have personally attended six Post Polio Conferences with no funding from the LincsPPN, although for the International Conference where I presented – with Richards help – there were personal contributions from some members and the local health authority but they in no way paid

all the expenses of this trip. Without the help from my family much of the work done would not have been possible.

In this last few days we have received an offer from Len Van Zyl – a Life Member – to take on the role of Fund Raiser. We have also received an offer from Susan Conley a USA member to put forward a proposal to local Rotary groups for us to be their International Project because of the work of our WebSite. We hope to give you more good news on that front in the next few months.

The LincPIN contains information that I find by searching the Internet, from other support groups newsletters that we receive, from talking with Polio Survivors and PPS Specialists across the world via email, and whatever is sent to me for inclusion. As often said in the newsletter we need you to write to us, to ask questions, tell us your problems and stories, and share your hints and tips with others. I look forward to hearing from more of you.

I would like to take this opportunity of thanking the committee for their hard work, we are now in a better position than we have ever been to continue with our work and improve the services for all our members. Thankyou (name those there) Thanks also to Chris Salter who cannot be here due to the distance for his continual work on our WebSite, all voluntarily and many hours each week. I would also like to publicly thank Bob Price, a US member who pays in all US checks to our US Account for us for his continual financial support. He also obtained the funds from three firms in Florida that allowed us to purchase a computer for the WebSite three years ago.

We need your help to do this and I hope that more of you will come forward to take a small share of the work to spread the load. Together we have a wealth of experience.

I would also like to take this opportunity of thanking my daughter Alison publicly for her continual help without which I would not have been able to devote the time I have to the work.

Vice Chair Report.

Janice Eary, our Vice Chair is away from home at the moment due to family illness. She is dealing with this subject and she will be doing a full report on this as soon as possible. Therefore this is just an outline statement so that you are aware of what is going to happen.

At the AGM a resolution was put forward that we have to make some slight changes to our Constitution. When we started we were mainly working with Lincolnshire but now we have members across the country and abroad and our Constitution needs slight rewording to reflect this. It was agreed at the meeting that this should happen. Janice Eary will now be discussing the proposed rewording with the Charity Commission and then will put this forward to all members for comment prior to voting via an Extraordinary Meeting.

Secretary’s Report.

At the date of the Annual General Meeting we currently have:-

UK – 139 Annual Members, 45 Life Members,

Overseas: 33 Annual Members 10 Life Members.

If you are an Annual Member you will receive a renewal form with your last newsletter of that years subscription. If you wish to continue receiving newsletters you must return this before the issue of the next newsletter.

Please note all contact details are on the backcover of the newsletter. All membership, requests for Information Packs, copies of leaflets and articles to:-

Hon. Sec. Wendy Grimmitt <Hon.Sec@lincolnshirepostpolio.org.uk>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

Web and Mailing List Administration Report.

This is going to be an unusual annual report but the LincsPPN is an unusual organisation. Unusual in the sense that in the few years that we have been operating we have achieved considerably more impact than could have been predicted from the resources at our disposal. That may in part be due to our capacity for self-criticism. I am therefore going to begin this report by admitting that during this past year web site development lost some of the impetus that had been built up in previous years. Our web site is still recognised as one of the foremost post-polio resources on the Internet. Nevertheless, by my own standards, and for various reasons, I have failed to adequately maintain and improve our web site in a number of areas. I am pleased to leave the negative behind and report that initial steps have already been taken to rectify this.

The primary goal is to redesign and rebuild the web site with a view to reducing the amount of work required for future maintenance and expansion. To this end I have already acquired development web space separate from our production web site. I am funding this myself for the moment.

We will in parallel be investigating and introducing additional facilities such as a members only area of the web site. However, I would emphasise that making post-polio related information freely available is still a priority. We cannot increase awareness of the range of issues affecting polio survivors by keeping information locked away.

We have already acquired one new domain name which during this first phase of development is an intermediate gateway to our production site.

http://www.lincolnshirepostpolio.org.uk/

Other domain names will follow. In conjunction with this first domain name we have also implemented a range of e-mail addresses e.g. membership@lincolnshirepostpolio.org.uk for all membership related enquiries.

In redesigning the web site we will be paying special attention to accessibility guidelines. The current production web site was designed according to principles that by and large have much in common with accessibility guidelines but pre-date them.

We have for some time been distributing via our medical professional mailing list, notices of polio-related updates to Medline. Medline, produced by the US National Library of Medicine (NLM), is one of the foremost clinical databases used to identify references in the published research literature. Within a week or so this update service will be publicly available. We will continue to maintain our existing range of mailing lists.

The above constitutes the bulk of the work for the coming year. However, given the availability of resources, we hope to further investigate other potential educational media. For example, although a number of technical, presentation and content issues remain to be addressed, we already have the capability for low volume CD ROM production. Initial CD ROM publications might include reference library material and interactive presentations on specific post-polio issues.

Polio Network Lincs

This is a Members Email Discussion list. If you have an email address and are not subscribed and would like to be then please email me, <chris.salter@lincolnshirepostpolio.org.uk> To remain on this list you will need to continue to be a paid up member.

Chris Salter.

Len Van Zyl – Fund Raiser.

We would like to express our thanks to Len Van Zyl, a Life Member and polio survivor, who has agreed to take on the task of Fund Raiser.

<len.vanzyl@lincolnshirepostpolio.org.uk>

[Editorial Note – Following the Treasurers Report we include information given during the afternoon by our Speakers. Life Memberr Dr. E. G. Dowsett and Diti Ravner who is a Teacher of the Alexander Technique and a Homeopath. I met Diti on the internet some months ago and was able to put her in touch with a Dr. in Israel who I had set next to at lunchtime at the International Confernece. We continued to correspond and she told me all about the Alexander Technique. She moved to London for four years in August. To watch the relaxed way she holds herself t with a straight back and head up and see the fluid way she walks was impressive.]

Lincolnshire Post Polio Network – Profit & Loss – Date 25/09/01 From Month 1, August 2000 to Month 12, July 2001

Chart of Accounts: Default Layout of Accounts.

Period Year to Date

Sales

Other Sales 740.64 740.64

740.64 740.64

Purchase

Purchases – Misc. Purchases 463.89 463.89

463.89 463.89

Direct Expenses 0.00 0.00

Gross Profit/Loss: 276.75 276.75

Overheads

Travelling and Entertainment Printing and Stationery General Expenses Suspense & Mispostings

151.30 5,128.77 (4,375.18) (635.23)

151.30

5,128.77

(4,375.18)

(635.23)

269.66 269.66

Net Profit/(Loss): 7.99 7.99

American Account.

Credit $2,249.29 Debit $1,147.50 Balance $1,101.79

Period Trial Balance – To Period: Month 12 July 2001

N/C 1200

Name Bank Current Account

Debit 361.11

Credit

2109 Accruals 804.02

2300 Loans 450.00

4900 Miscellaneous Income 740.64

5002 Miscellaneous Purchases 463.89

7403 AGM & Conferences 151.30

7501 Postage and Carriage 56.00

7502 Telephone 395.56

7503 Internet 855.76

7504 Office Stationery 3,458.28

7505 Books etc 140.85

7506 WebSite 504.02

8200 Donations 1,685.36

8201 Subscriptions 2,827.50

8204 Insurance 137.68

9998 Suspense Account 635.23

TOTALS 6,833.60 6,833.60

American Account Membership. Donations Opening Balance	Credit. $ 1,245.00 $ 410.00	Debit.	Internet Services Conference Books & Videos
$ 424.50$ 174.00
$	594.29	$	49.00
$ 2,249.29	$ 647.50$ 500.00 $ 1,147.50
Transfer of Funds to UK a/c
Balance $ 1,101.79
Transfer of funds USA to England	) 346.64 ($500.00)) 270.00£ 616.64
Transfer of funds from Deposit Account

Managing your Lives by Dr. E. G. Dowsett.

There are three main things to think about. Conserving your Energy, cutting down on Stress, and simplifying your work.

Conservation of Energy.

Firstly do what you love to do, without that life is not worth living. Secondly do what you are obliged to do and seek every way of either delegating this to others or modifying how you do it to make it easier. Modifying this can be; doing this in small sections resting in between; using appropriate aids or equipment like a Blue Badge (used to be Orange but its now blue) so you can park nearer to the shop and not walk so far; a decent wheelchair that is comfortable; an electric rise leg raise chair to save your arms struggling in and out of ordinary chairs. The list is endless especially with the huge range of equipment now available.

Cut down on Stress.

Physical and mental stress (and mental stress is worse) are the most common causes of worsening symptoms. One example that many of you will relate to is filling in a DLA form or other similar forms. How many of you felt terrible for days when dealing with forms like this? Stress is normally dealt with by glucose metabolism to the essential organs of the body. This mechanism fails in polio survivors and those with ME due to hypothalamic disturbance in the brain. I know you are perfectly capable of filling in forms but doing this will cause you stress so try and reduce it by getting help. Its not giving in to ask for help if not doing it means you are going to feel bad for days.

Simplification of work.

Use every piece of equipment that there is to make the job easier. How many of you – including myself – have said ‘oh that’s only for the elderly or disabled and I am neither’ without trying to see if using it means less pain and less fatigue. Have your work areas remodelled so that you can reach items easily with your elbows by your side rather than at arms length.

If you live alone then it might be a good idea to be assessed by Social Services to have help come in and do the heavy work for you. Don’t struggle on alone only managing the basic of daily tasks. Have a word with your neighbours and friends and see if there is someone who can come and give you a hand and do the heavy part of a job allowing you to do and enjoy what you can do. Its not easy changing from the do-er to the overseer but if it helps you manage your energy to greater effect then give it a go.

It is imperative that you continue with your hobbies, or if they are not possible then find new ones that you can do. If you can afford it some communication equipment like a computer, or a tape machine to record stories and poetry and get someone to type it up for you.

If you have a window of energy during the day or if you need to do something during a part of they day then plan for it. Even nightschool or adult education classes are possible so long as there is no pressure on you to complete tasks by certain dates. Plan your week so that you need do little else but attend that class. If its in the evening then laze around during the day and store up your energy for the evening. Continue to be strong minded and make plans that you can manage. Show the health professionals that you are seeing that you have a positive attitude to life despite your problems and dont be afraid to ask them for help so that you can continue to manage your energy levels to their best advantage.

If you haven’t already got a pet then why not try ‘Furry Therapy’. How many of you have a cat and get comfort from stroking that ‘tummy’, scratching them under the neck, and listening to that lovely purring. How about a hamster, budgie or goldfish, even though the last two are not furry, they can be a delight to watch.

Finally it might seem strange to you, but not wasting energy; using aids and equipment; pacing and resting each activity will actually allow you to do MORE of what you want to do.

If you get invited to something like a Wedding and Reception, don’t just say no I can’t manage without finding our more about the venue, and seeing if its possible to attend and still take necessary rests. You will have to

• rest up for a couple of days before,

• plan the day well taking rest breaks where

necessary taking with you whatever you need

to do that,

• decorate your wheelchair/scooter/cane or

crutches to match your outfit

• if its possible then get your or a comfy chair

taken to where the reception is being held

• and plan on doing very little days following it.

Remember you will feel better if you manage to do something that you really enjoy doing.

Other similar articles on pages 20 and 21

ALEXANDER TECHNIQUE

by Polio Survivor Diti Ravner Teacher of Alexander Technique Homeopath

Currently living in London

Tel: 020 7586 5026 Email: <ditiravner@yahoo.co.uk>

English is not my first language and I am not used to speaking to so many people but I do my best to tell you about the Alexander Technique (AT) and how it is helping me with my polio problems. First taking lessons and later on being trained to be a teacher of the technique.

I myself had Polio when I was one year and a half, in 1950. About the age of 40, problems started to appear, falling more often, as a result of collapse of the knee, or loosing control of my ankle. Pains aches and fatigue. At that time about 12 years ago I started taking Alexander Technique lessons. The Orthopedic consultant at that time recommended an operation, and his opinion about taking AT lessons was: “You don’t have time for that nonsense”. Never the less I began taking lessons and 10 months later I decided taking the training course.

A	few	words	about	Alexander	himself,
Alexander	was	an	Englishman	living	in
Australia, a reciter of plays on the radio. (1869-
1955).	He developed the technique at the

beginning of the 20th century. Mainly after returning to London. He himself suffered from hoarseness, and could not over come it although the best doctors treated him. As a reciter the voice was his main tool of working. So he decided to try and solve the problem by other means. So he used a set of mirrors put around him and he discovered that his speech was affected by the way he throws his head backward while he is talking.

This led him to understand what he called the Primary Control which is the place the head sets on the spine. The head, neck and torso need to be properly aligned. If we achieve enough freedom there all the movement of the limbs are becoming more free.

Might this help explain……The goal of this discipline is to bring the body’s muscles into natural harmony. The Alexander Technique attempts to remedy these problems by discouraging habitual, counterproductive muscular reactions and allowing efficient natural reflexes to take over.

First Lesson – How to change habits. How to change the way I do the usual functions of the body: sitting, getting up from a chair, and walking. From my experience I believe now that each one of you know how much efforts he puts on his neck while doing those functions, and if you think about it the way we position our neck is not helping us to get up from a chair.

To change habits is very difficult for each person and especially for a person struggling to find balance on each step he makes. You can inhibit your habitual muscular responses by deliberately and consciously “doing nothing” so that your body can revert to its inherent natural movements. This is not an exercise in relaxation, per se, but rather a way of reclaiming an efficiency and ease of movement lost through years of poor postures and unnatural muscular response. As you “unlearn” inappropriate habits in the formal sessions, you’ll be encouraged to practice your new freedom of movement as you go about your normal activities.

While I was still struggling with the change, my teacher introduced to me a different way of thinking into the body, giving the instruction mentally before doing.

Thinking into the body is to use the mental skills we have to allow us thinking about the action before doing it. For each person, and especially for a person with a disability, there are many things we cannot do but with the power of the thought is unlimited. It is difficult to explain this but if you take a lesson and experience this you will understand more.

Alexander says that mind wandering is a shortcoming. Awareness and concentrating into the body by:-

• Let the head come forward and up to allow

the back to be longer and wider.

• Allow your back to release into length and

width;

• Allow the hip joint to move freely, so the

legs move freely

• Allow your shoulder blades release to the

side and the back to become wider

In his writing Alexander mentions that Physical exercises could do some damage to the body, because always there is an uncontrolled strain.

Today I know how much damage to the weak muscle exercises can cause.

I remember the first time my heels, both of them were connected to the floor. I mean the feeling of solid ground under my feet. I felt kind of unity through all my body, I believe that because of the walking problem, each step is unbalanced. Putting your soles on the ground is a solid place to start from. Even if sitting to see with your mind’s eye the soles on the ground gives the body kind of up lifting, it evokes a motion up ward.

The body is influenced by 2 powers. Gravitation the power from above down, and the power from inside Vitality this is the power that acts from down towards up. The balance between those 2 powers allows us to move.

Now I will go back explaining the basic of the AT:

• Changing habits, changing by stopping

the will to act.

• Inhibition, Stop, undo, the key for change,

actually this is the first time I refer to doing

which actually is undo, stop. By preventing

reacting as we used to we will have a

chance to do it in a different way. I

consider it also as the freedom of decision.

• Wrong sensory-appreciation,

recognizing it. Seeing the gap between how we think we do things and how we really do those things. Wrong concepts, about ourselves, How we sit how we walk, what we can do or cannot do.

About a lesson. The teacher works through the lesson the giving the pupil directions.

Let the neck be free and the head leans forward and up to allow the back be longer and wider. The teacher talks the pupil through the lesson with the help of the teacher’s hands, so there is listening to the words, with the ears, and the listening to the touch.

Let the head be free, do nothing, only thinking: ‘My head is free’.

Let the head come forward and up, again not doing just thinking and the hand of the teacher will do it, very gently. While the head goes forward and up, the back becomes longer and wider, this how we achieve a better function of the limbs. It is important to see all those directions as all at once and one after the other. In a repetitive and renewed manner.

By working on the head-neck-back relation we try to avoid the stiffening of the neck. Usually the neck presses into the body towards the spine, the head is thrown backward, the lumbar part of the spine stiffens as well.

This is what we call in the technique releasing the primary control, this is where we want to achieve maximum freedom.

From our experience we know that whenever there is a part with little movement, there is another part which is intense and stiff.

I can not lean on my left side but I learn to stand on both legs, My left side especially leg trembles, not because of the effort, but like some vitality goes through it.

Part of the work is done on a table. On the table the pupil can understand what does it mean – learning to give up holding the body. I myself started learning not to stiffen up all the time. It allows the body to rest physically and on the other hand working hard mentally, Movements that were impossible could now be possible and it feels as if my body is awakening.

Releasing the side that was responsible, and being able to let the teacher move the limb and arm without my interference.

I would like to speak about the joints. As much as possible I try not to lock the joint it strains the muscles, I used to imagine the freedom of the ankle-knee-hip joints as a puppet on a string, each joint causes the other one to bend.

My not stiffening up so much is becoming less, which means I am getting more confidence that I can give up what was holding me for so many years.

The undoing is very difficult, there is fear of failure, I have to think again and again that we are not dealing with success and failures, this is a different kind of learning, the teacher says: try not to involve your will.

With the time my back strengthens especially on the waist, lumbar part.

I found out the importance of overcoming the fear of the unknown, no more head thrown backward, no more stiffening the waistline to move has enabled me to stand, and move in a

more fluid way.

I found out the importance of saying “no” doubting the existing “knowledge” and overcoming the fear of the unknown, no more head thrown backward, no more stiffening the waistline.

From the book: “F M Alexander The man and his work” By Lulie Westfield An American who had Polio and took lesson and the course from Alexander himself in 1940. “On the first examination Alexander tell me he is not interested in the function of muscles, but the muscles would be affected through the work on the primary control. The walking is related very much to the situation of the back. When one has had Polio, it is as if certain connections in a telephone system have been destroyed. Exercises or surgery in a specific part of a harmed body may sometimes cause temporary improvement but in the long run they are likely to increase the mal-coordination of the body as a whole. And this in time will affect adversely the specific part.”

Judith Leibowitz also had polio in both legs, in her book “The AT” writes: “As I become more and more aware of my habits of movements, I begun to realize that in order to allow change to occur, I had to first give up my habits. I could change my habits of movement so that within my limitations I could operate at optimum efficiency.”

The work is hard. Now after years of being trained as a teacher of the technique, I experience deterioration in my ability to walk or stand, but I go back to the technique, I organize my body. Always I am going back to the directions, head forward and up, releasing the neck and lengthening the back. Looking straightforward and stretching the neck up.

I myself combined it later with studying then practising Homeopathy. In Homeopathy I could offer more help, for example I saw good results with problems of fatigue, and other pains and aches, and psychological problems as well. I believe the Polio was such a traumatic event to the body and mind that the help needed is on several levels and the Homeopathy combined them all, but that will have to wait for another talk.

A short perspective

on the Alexander Technique by member Mary Kinane who attended the AGM.

About a month ago I received a gift of a free Alexander Technique Session at a local healing centre in Lancaster. I made an appointment with the Director, who is an accomplished practitioner in this field and teaches it widely in Britain and Europe. My session lasted 35 minutes – this is the normal time span for a session in this particular technique. Previous to this session, I had dabbled in exercises which I had found in books about the technique, and had some advice from a friend of a friend on how to lie on the floor on my back to ease back pain, with a book under my head.

The session started with the practitioner taking practically all of my weight (I am about 10.5 stone) in his hands and gently lying me back onto pillows, in a way which eased any discomfort I had. I didn’t even have to take my shoes or calliper off. He didn’t “teach” me anything as such, but took me through a series of movements during which he suggested I “…think of my spine as a parachute”. Several times he told me to lift my “good” leg from the knee, but as soon as I would start to do as he told me, he would stop me in mid-movement. I followed his instructions and after a while these start-stops had the curious effect of lightening me up, and the image of my spine as a parachute became more and more real. About half way through the “lesson” he stood me up again – I didn’t have to struggle, to push, or to lean on my hands – he took all the weight, and he lead me around the room still supporting me from in front and behind with his hands. Without actually instructing me to, he had me walking with my neck and head leaning forwards, and gradually loosening the tension which has become such a familiar part of my walking and sitting pattern these last few years.

The Alexander Technique is a discipline, and I believe it has to be practised on a regular basis in order to get the benefit, but there are simple and do-able movements which polio survivors can do at home if they can learn a few lessons first from a good teacher. The fee for an average 35 minute session is £16.

This is a difficult experience to describe in conventional terms, and I am not claiming any instant or long-term change because of one session. I did leave the session feeling lighter, looser and in less need for the painkillers which I’ve been resorting to for the last year. This man is not available on a regular basis in Lancaster at the moment, so later this week I

have an appointment with a Practitioner in the Feldenkrais Technique, which uses a movement system quite like the Alexander Technique.

For people who attended the A.G.M. a few weeks ago in Lincoln, you will no doubt have noted the very impressive posture of Diti Ravner who gave her demonstration on the technique. As polio survivors we tend to be very sceptical of new things which others claim to change lives. But I also know that to try a “new” technique like this is to experience it for oneself, and to feel the possibilities for easing tension as it did the day I had my “sample” lesson – it left me wanting more…

Mary Kinane – Lancashire. <mary@marykinane.free-online.co.uk>

Have Vent Will Travel

Having been a ventilator user for the past four years, I have tended not to want to stray far from my familiar surroundings. Since having my vent I have not been away on holiday and the only trips I have made with my vent have been to Papworth. for a yearly sleep study.

I knew the time would come when I would have to step out into the big wide world with my vent in tow. It came to pass this summer when I attended the wedding of my goddaughter Samantha.

The wedding had been in the planning stage for the best part of two years and was to be held in a castle in Northumberland. An occasion not to be missed, I had to get myself geared up and ready.

I had arranged for a friend to drive me to the venue in my car, before that could happen I had a lot to do, the worst part being taking Ben boxer up to the kennels.

The wedding was to take place on a Friday, that meant I had to travel up on the Thursday, then stay for two nights in a B&B, returning on the Saturday. I viewed this with trepidation, what would I do if my vent broke down? What if I could not get comfortable in the bed? What if it was cold? What if I could not sleep and looked like a wrung out rag at the wedding?

On the morning of my departure I was so busy I had no time to worry. The first job was to get Ben to the kennel. He took with him his toy frog, duvet and a supply of his favourite biscuits. On arrival at the kennels I had to drag him from the car, he walked into his pen as if going to the condemned cell. This was all put on to make me feel bad. I drove away feeling as if I had committed high treason.

My next task was to load up all my gear. The most important thing was my vent, then five pillows, extra blanket, tablets for anything from malaria to the black death, new outfit, shoes which kill me, hot water bottle and snake bite kit. I then felt I was prepared for anything.

The journey was uneventful (no pun intended there) the weather was glorious, a perfect Summer day. Northumberland is a beautiful County and the scenery is spectacular. We were booked into a farmhouse B&B at Haydon Bridge, this proved to be a lovely old stone house, the garden a riot of colour, begonias, roses and lilies contrasting with the mellow stone.

We were greeted on arrival by a big old rooster, his little yellow eyes gleaming and his green tail feathers casting a metallic sheen in the strong sunlight. A collection of hens ventured out to view us and to inspect my car. A black Labrador added his voice to that of the rooster, which brought out the lady of the house, she was accompanied by a little border terrier. Things for me started to assume a brighter hue, I like to be surrounded by animals.

The farmhouse itself was a joy to behold. Large rooms full of antiques, steps up and down in unexpected places and squeaky floors. With some help I managed to convey all my gear up the creaking stairs and along corridors to my large bedroom. Then horror of horrors, I had forgotten the electric extension lead for my vent and the plug was on the opposite side of the room from my bed. Not to worry I was told, there was one in the house and I could borrow it for the length of my stay.

The first evening we had arranged to meet with the bride and bridesmaids, brides mother and brother plus a few more people in a pub in Hexham; there we planned to have a meal. This turned out to be a steak as tough as saddle leather, which after I had persuaded the pub dog to chew for me, was quite palatable. We returned to the farmhouse for the night, pausing to savour the scents of the Summer night and to listen to the soft crooning noises emanating from the hen house.

I retired to my bed sure I would not sleep a wink. I donned my mask and turned on my

vent. The next thing I knew it was morning, the sun was up and the whole World was dew kissed and golden. I was feeling ready for anything, especially a good breakfast, which we took in solitary grandeur in the large diningroom. We feasted on eggs freshly laid by the young lady hens we met on arrival, with toast and home-made raspberry jam to follow.

Then it was time to smarten myself up, squeeze my feet into my fashionable shoes and drive over to the castle for the wedding ceremony. The castle proved to be very impressive, huge rooms, thick walls and suits of armour. Each room decorated in the heavy baronial style. With much red drapery, shields, coats of arms and the like.

The actual wedding took place on the ground floor. The banqueting hall was right at the top of the castle, up seventy-nine steps. Luckily I was able to go up on the service lift.

The ceremony went off without a hitch, the bride was beautiful, and was attended by three bridesmaids and also her beagle. He wore a bow around his neck to match the bridesmaids dresses and he behaved perfectly, although he did tend to yawn rather a lot. We then all gathered in the castle courtyard to drink “Pimms”, mooch around and wait for the feasting to begin.

The wedding jollification’s lasted all the rest of the day, a ceilidh band played in the evening. I was not able to dance, so was free to let my mind wander. I sat in a window embrasure at the very top of the castle. Looking from the window into the warm Summer darkness, I reflected on what the castle would have been like a few centuries ago, what celebrations would have taken place. Who had lived and died here, worked, loved and hated here, what dramas had been played out in this place? How long will the castle stand and how many people in the future, will sit in the same window and wonder what had happened in the past?

Soon it was time to return to the farmhouse. We paused to watch the bats and to enjoy the scent of the flowers in the garden, then crept in, trying not to make the stairs creak, then into bed, on with the vent and a good nights sleep. Next morning after breakfast we started for home, nothing had gone wrong, I had worried for nothing.

I was desperate to collect Ben from the kennels, I got there as fast as I could. I just wanted to see the glad expression on his face when he saw I had returned for him. I stood waiting by the car, suddenly there he was, galloping across the yard towards me. I opened my arms and said “come to mummy” he completely ignored me, ran straight past and jumped in the car. He wedged himself behind the passenger seat, his face like thunder. The kennel maid brought me a plastic bag containing Ben’s duvet, “sorry” she said, “you have some washing” Ben has been peeing on his duvet. That will teach me to leave him behind when I go away.

This trip has done me a power of good, I now accept one should meet problems head on. I have always done that in the past. Now I realize I am getting out of that habit and anything which seems to be a problem is being put off as too hard to face, hence the lack of holidays. I hope in the future to be making a few more trips and broadening my horizons.

I returned home knowing I had another wedding to attend in a fortnights time. This time I was the bride. My wedding also went as planned, not a big wedding, no castle, bridesmaids or cake but, just as enjoyable. I hope in the future to be writing more articles for the “LincPIN” I will write using my new name which is Christine Horrobin..

Christine Horrobin. <christineayre1@ntlworld.com>

[Editorial note – Yes our Christine of Catley Abbey in Lincolnshire is back writing for us. Not only back but newly married and positively glowing when we met at the AGM. To you both our heartiest congratulations from all readers of the LincPIN.]

EATING WELL EASILY – PART TWO

by member Vivien Holland

In my last article I shared with you some of the ideas for meals that I find helpful. They were the kind of meals we as a family eat all year round, but I appreciate that now there’s a nip in the air, we naturally feel the need for warming, comfort food too. So this time I’d like to give a few ideas for easy winter meals. Prepared in quantities that will last more than one day and freeze too, you’ll have something already prepared for those particularly busy or tiring days. Also, having these meals on hand means that precious energy is freed up for other things.

I appreciate that many of you make good use of ready-made meals, and there certainly are a wonderful selection to choose from these days

aren’t there. As my husband and I still have a grown up son at home who has a large appetite, we would find these meals uneconomic so I’ve never had occasion to try them out very much – you would be the expert here and could no doubt share with us your own recommendations.

Casseroles and curries go down well when the weather is cold and seem to taste just as good the following day. I know that some of you might like to eat more vegetarian meals and the beans that I mentioned last time, (black eye, borlotti, flageolet, cannellini and chick peas) can be very useful here. I make a curry using chick peas and any mixed vegetables I have to hand, along with a jar of curry sauce. Also beans are very good to bulk up a meat casserole and make it go further so that you need less meat. Pale green flageolet beans go very well in a chicken casserole and black eye or borlotti beans go well with lamb or beef. And of course you are probably familiar with red kidney beans in any chilli dish, whether you are using lamb, beef or soya mince.

Lentils are very good in soups and casseroles. I make a really big pot of thick soup using two cups of split red lentils, about five cups of water, a couple of chopped onions (frozen would be fine) and two tins of chopped tomatoes. Add whatever dried herbs you like and a couple of stock cubes and you have a really cheap, nourishing soup that will last for several days or can be frozen. I find this a particularly quick, easy soup to make that doesn’t involve cutting up loads of vegetables – quite a daunting task that isn’t always possible. If you do want to add vegetables to this, the root ones like carrot, parsnip and swede go together well with the lentils. Also, if you are planning to make soup or a casserole, keep any vegetable water in the fridge from the previous couple of days – it’s a shame to throw it away as it contains valuable nutrients.

Pasta is another good standby, although I feel it could be a mistake to rely on it too much. It’s always good to aim for as much variety as possible. When you have pasta, try to make a balanced meal, including some protein. Mushrooms combine with pasta to form a complete vegetable protein, or you could add a little chicken or fish, preferably along with some green vegetables.

With casseroles and soups in mind, I’d like to tell you about a wonderful little gadget I discovered some months ago. It’s a Heat Diffuser that’s used on the hob under the saucepan and stops food sticking. It really is so effective that I wonder how I’ve been cooking for the last forty years and managing without it! I can leave virtually anything simmering on the hob, and put my feet up, confident that it won’t burn or stick. As a result, cooking has become far less tiring. They’re available by mail order from Lakeland Ltd. (Tel: 015394 88100), and cost £5.50 + postage. Their catalogue is full of other useful gadgets and items for the home and is definitely worth looking through.

As this will be my last article for a while, I would like to wish you all well in your efforts to keep going, knowing that many, like myself, are coping with the late effects of polio. We naturally wonder just how we are going to be affected in the future and hope that we can maintain what strength and energy we have. While I wouldn’t want to raise any false hopes, I feel I must tell you about a supplement I have been taking for the past 18 months that has helped me personally. It is essentially a mineral supplement in liquid form that is very well absorbed. What is unusual about it is that it contains over 60 minerals, in fact all the minerals that should be in the soil and would be in our food if the world’s agricultural soil had been properly cared for over the past century. There isn’t space here to give full details, but if anyone is interested in having further information, I can send this to you. Unfortunately, it is quite expensive, but I would be able to supply it at trade price plus freight (£20.50 for a month’s supply). Finally, I’d like to thank those of you who have written to me. I’ve really appreciated hearing from you.

Vivien Holland,

32 Green Lane, St. Albans, Herts. AL3 6EZ.

<vivienholland@hotmail.com>

Little Johnny, and his grandfather entered the vacation cabin, and kept the lights off until they were inside to keep from attracting pesky insects. Still, a few fireflies followed them in. Noticing them before his grandfather did, Little Johnny whispered, “It’s no use, Grandpa. The mosquitoes are coming

Poliomyelitis ‘History’ Summary Part One by Phyllis Hartke, President

San Francisco Bay Area Polio Survivors.

I write this summary for polio survivors and SFBAPS members in response to enquiries about polio’s history. This is a very abbreviated summary of polio’s history and how the medical professional struggled to understand its facets and determine appropriate diagnosis and treatment methods. I try to provide the reader with:-

1 insight about the multi-century struggle of

medical practitioners and researchers to

understand polio epidemiology;

2 reason to appreciate our continuing

struggle for medical and community

awareness of polio’s late effects and

remedial needs;

3 knowledge about how polio’s sporadic

cases and epidemics created new fields of

medicine and the ‘public health’ arm of

local and national governments; and

4 reasons for being proud to be a survivor of

a deadly infectious disease that has

baffled the world for centuries yet

contributed so very much to mankind

worldwide.

The historical facts included in this summary were provided in ‘A History of Poliomyelitis’ published by Yale University Press in 1971 and designated ‘Yale Studies in the History of Science and Medicine 6’. The esteemed author is John R. Paul, M.D. who the book’s jacket references as emeritus professor of preventive medicine and epidemiology at Yale University, a leading investigator of poliomyelitis and its epidemics for more than 30 years, and a contributor to the advances that eventually led to its control.

Evolution of Polio Terminology..

Names and terms by which ‘polio’ is known changed over time direct relation to increased knowledge, or confusion, about the nature of the disease.

The first term used – ‘Debility of the lower extremities’ – is credited to a pediatrician’s description in 1789. The mid-nineteenth century saw multiple terminologies in use, based on the site of damage pathologists (a new field of science) believed caused the paralysis. Key terminology used is as follows:

‘Poliomyelitis anterior acuta’ is derived from both Greek and Latin words, and was later shortened to ‘poliomyelitis’ and ultimately its slang ‘polio’. [Greek words for ‘gray’ and ‘marrow’ )the gray marrow of the spinal cord) and the Latin suffix for ‘inflammation’ are root words for poliomyelitis. ‘Anterior’ refers to the horns of the cord (i.e. the anterior part of the gray matter of the spinal cord). ‘Acuta’ was sometimes replaced by the word ‘subacuta’ when identifying the disease.]

French terminology of ‘fatty atrophic paralysis of infancy’ and ‘essential infantile paralysis’ was later anglicized and shortened to ‘infantile paralysis’ notwithstanding the fact that withered limbs were not always involved and the disease was not restricted to infants.

‘Heine-Medin disease’ terminology was introduced in 1907, honouring a German orthopedist and a Swedish pediatrician for their achievements that greatly expanded scientific understanding of the disease during the mid-to late-nineteenth century.

Interestingly, Poliomyelitis had become a fixed term, not able to withstand more evolutionary change, when its causative agent – the virus – was discovered in 1908. Instead of saying ‘poliomyelitis virus’, it was referred to as the virus of poliomyelitis. This terminology was shorted to poliovirus by the mid-twentieth century, and later, the family of enteroviruses absorbed the polioviruses.

Poliomyelitis Beginnings…

It is suggested that poliomyelitis most probably dates back to the dawn of written history, even though early twentieth century epidemics made it a disease of that era. That era saw the introduction of modern sanitation and its impact on bacterial enteric infections and human immunity. Pestilences and epidemics of many kinds plagued the Dark and Middle Ages, as did an unusually high infant mortality rate, all of which likely overshadowed the endemic spread of the polio virus that silently infected and immunized the great majority who did not develop paralysis or die from the disease.

In the Carlsberg Glyptotek, Copenhagen, there is archaeological evidence of poliomyelitis in ancient times. An illustration depicts an Egyptian stele dating from the Eighteenth Dynasty [1580-1350B.C.] showing a crippled

young man, apparently a priest, with a withered and shortened left leg, with a foot positioned typical of flaccid paralysis, using his staff for support. Danish physician Ove Hamburger in 1911 identified paralytic poliomyelitis as the most probably cause of the priest’s deformity, and few physicians examining this picture since then have doubted that diagnosis or its significance. [the stele will be reproduced in the Xmas issue with the second half of this article]

History reveals descriptions of skeletons with abnormalities attributed to polio. Paralytic polio descriptions are also found in biblical and Greco-Roman times.

In ancient Greece there developed an appreciation of a scientific attitude toward disease, contrary to the beliefs of supernatural or magical causation factors. Hippocrates, born in 460 B.C., was science’s chief mentor during these times. This ‘father of medicine’ kept headquarters on a Greek Island in the Aegean, but travelled widely and saw different people, places and things. He was an astutely observant physician and an epidemiologist recognizing that disease varied under different conditions of climate and race.

Medical historians studying Hippocrates’ two volumes ‘Of the Epidemics’ find no reference to a paralytic poliomyelitis epidemic. They conclude that its absence indicates paralytic polio outbreaks were rare and limited to sporadic cases rather than epidemics. Translations of the complete works of Hippocrates support this conclusion.

Notable Hippocrates’ accounts of ‘clubfoot’ cases, and the accounts of ‘club-foot’ cases Roman physician Galen made 500 years later [138-201 A.D.] Medical historians maintain that this term included both congenital and acquired malformations, unlike today which covered most if not all deformities involving ankles and feet, including flail-like conditions of the lower legs and subluxations of the ankle joints leading to abnormal positions of the feet. They believe that sporadic paralytic polio surely caused some of these deformities acquired at an early age.

Eighteenth Century…

It was not until the late eighteenth century that paralytic poliomyelitis was first described with a modicum of accuracy or that a fever was observed to precede limb weakness. The autobiographical account of Sir Walter Scott’s illness and resulting lameness significantly advanced the precision in diagnosing infantile paralysis.

In 1789 the first clinical description of poliomyelitis appeared in a medical text – Treatise on Diseases of Children (2d ed.) by Michael Underwood, a London pediatrician – under the heading ‘Debility of the Lower Extremities’. He was the first physician to consider poliomyelitis as an entity. He had distinguished medical credentials and extensive experience as a surgeon before changing his career to midwifery and child welfare for which he earned prominence and the appointment of Physician to the Prince of Wales. In 1799 his 4th edition of this medical text included in the paralysis, or palsy, section considerably more information about diagnosis, treatment, and prognosis.

About this same time, another landmark in polio history emerged. Timothy Sheldrake, a mechanic by trade but an astute orthopedist by interest, was a trussmaker to London’s Westminster Hospital. His wide experience in handling crippling deformities in children supported his London shop. His unique vision and efforts collecting, documenting, and classifying various kinds of foot deformities resulted in two books addressing clubfoot and acquired deformities in the legs and feet of children. Here is found the first series of paralytic poliomyelitis cases.

Early Nineteenth Century..

During the next twenty-five years few took advantage of this new knowledge, and newly published medical texts stated nothing more about polio. The next landmark in polio history was in early nineteenth century. Although a well-known Italian physician and surgeon, a prolific writer of medical treatises, and supervisor of Italy’s small pox vaccination program, few outside of Italy knew Giovanni Battista Monteggia. His 1813 medical treatise included a vivid clinical description of poliomyelitis from onset to late physical effects.

Monteggia was the first person to record the paralysis as flaccid without muscular response to sensory stimulation and without foot withdrawal when the sole is tickled. Although the nature of polio was still vague, he was the first not to reference ‘teething’ as a possible cause.

Ten years later, 1823, a medical text included London surgeon John Shaw’s clinical

description of polio. Noted were paralysis and limb wasting during infancy that frequently causes spinal distortion, the sudden attack aspect of the illness, and that it affected children outside England, including first-hand observation in India. Now emerging was consideration of geography and environment as factors in the spread of polio (i.e. possibility of different strains or types existing elsewhere and the effect of poor sanitary environment).

Scottish neurologist Abercombe, uniquely aware of separate functions of different parts of the spinal cord, surmised in 1828 that only part of the grey matter – the anterior segment that controlled motor nerves, not the posterior segment that controlled sensation – was involved. This remarkable discovery is today a diagnostic element of paralytic poliomyelitis.

The year 1840 marks the greatest achievement in the understanding of polio. Published was a 78 page study of polio by Jacob Heine, a German orthopedist and exponent of physical medicine. (Several members of the Heines family were noted orthopedic surgeons. Jacob’s father was the first to use osteometry to straighten bones, and Jacob’s son was noted for his orthopedic writings).

Jacob Heine monograph was an accounting of his personal experiences with a series of paralyzed young patients that he decided to write after reading the 1836 immediate accounting by John Bedham in England of four cases. Dr. Bedham described accurately this apparent ‘outbreak’ – sudden paralysis in infants under age 3 ushered in by cerebral symptoms (drowsiness and abnormal state of pupils of eyes) without impairing the child’s health – but failed to understand the nature of the malady (i.e. cerebral or cerebral-spinal lesion) and how to treat it.

By publication reaching a wide audience Dr. Bedham hoped to receive advice from more experienced physicians. This is perhaps the first evidence of a physician concerned about public health. Unfortunately Dr. Bedham died of tuberculosis at a young age (33) and before publication of Jacob Heine’s 1940 report responding to Bedham’s enquiry.

For the first time there was more than a review of cases. The entire 78 page report meticulously and systematically addressed all features of the disease then known that Dr. Heines considered important. He concluded that the central nervous system, the spinal cord, was affected. He addressed therapy, bracing, and exercise. He listed clinical features prominent in every acute polio case, the stage preceding limb paralysis.

In the second edition of that book published 20 years later, Dr. Heine was even more convinced that the problem was in the spinal cord. He was perhaps the first to practice sensible treatment for paralyzed limbs – exercise, baths, simple surgical procedures, bracing. (Accepted practice in that era included purges, emetics, blisters and bleedings.)

Sir Charles Bell, a distinguished British neurologist, learned during consultation with a mother about her child with one waste leg about an ‘outbreak’ occurring in the early 1830’s on St. Helena, an isolated island. This revealed that children over the age of 3 and up to age 5 were affected. Dr. Bell’s case report noted that the matter deserved inquiry, clear concern a bout the nature and circumstances of the disease.

Mid- to- Late Nineteenth Century…

Knowledge of the nature of polio proceeded slowly, notwithstanding these landmark events. Different and opposing theories continued to exist about whether polio lesions affected the brain or spinal cord. Physicians in the United Kingdom and Europe still classified cases as ‘temporary paralysis in early life’ and ‘morning paralysis’ and ‘essential infantile paralysis,’ observing the rather prompt disappearance of paralysis and seemingly complete cure. That controversy was finally set to rest some years later by the microscope. It revealed the cord lesions of poliomyelitis otherwise invisible to the naked eye.

In 1840, writings of orthopedic surgeon A. G. Walter indicate polio was in the United States as early as 1810. During this era paralysis acquired during infancy was not unusual and teething was still considered a cause. Walter’s publication described a series of cases he treated in Pittsburg since 1837, popularizing in the U.S. treatment by operation – cutting tendons in clubfoot, subcutaneous section of the Achilles tendon. France and England were already using this treatment method.

Then in 1841, the third epidemic was reported. The place was West Feliciana, Louisiana. Dr. George Colmer, an English physician who settled in Springfield, Louisiana, reported the epidemic. The short note in an American medical journal stated the facts and attributed

‘teething’ as the cause given the age (under two) of affected children.

Great medical advances were made in the second third of the nineteenth century. Cellular pathology was advanced by the now perfected magnifying power of microscopes. Previously invisible cellular and tissue changes could now be seen. Physiology and pathological anatomy set clinical medicine free to develop its own scientific potential. Led by Louis Pasteur, the ‘germ theory’ of disease and new fields, bacteriology and microbial infection, developed.

Neuropathologists advanced the study of poliomyelitis. They explored the site of the lesion in the spinal cord. French scientists Jean-Martin Charcot and his associate V. Cornil viewed under a microscope autopsied sections of the spinal cord. This showed large motor nerve cells in the cord’s gray matter, with particular loss of nerve cells in the anterior horn of the gray matter when paralysis existed. This confirmed Heine’s views thirty years earlier.

In 1888 Scandinavian neuropathologist Rissler’s investigation revealed that poliomyelitis was primarily an acute systemic infection with lesions not necessarily limited to the central nervous system, the latter being the most serious lesions because of the resulting paralysis damage. He was convinced of Charcot’s theory that motor cells were the site of the destruction (myelitis) caused by some injurious agent, on the heels of which neuronal degeneration rapidly occurred, leaving atrophy and scarring in its wake. (The first accurate account of the cerebral type – encephalitic polio occurred in 1884 in Vienna. Charcot’s ablest pupil Pierre Marie corroborated Strumpell’s observation the next year.)

American knowledge of the disease, including neuropathology and neurophysiology, was scarce and faulty until Dr. Mary Putnam Jacobi brought to American physicians ‘the idea and evidence that meticulous studies of the neuropathology of poliomyelitis could be rewarding and that the real seat of the trouble lay in destructive lesions in motor nerve cells in the spinal cord.’ In 1886 the distinguished Dr. Wm. Pepper (professor at Univ. of Pennsylvania at Philadelphia and the acknowledged dean of American physicians) chose Mary to write the scholarly and exhaustive chapter on poliomyelitis for the 5- volume medical textbook ‘System of Medicine by American Authors.’

Dr. Jacobi’s training and superior knowledge of the subject peculiarly qualified her to write this scholarly 50 page review article ‘Infantile Spinal Paralysis.’ A member of the New York publishing family, she received a pharmacy degree in 1863, and her medical degree the next year. After two Civil War years, Mary determined her medical education was inadequate and went to Paris to get a second medical degree. She enrolled in courses at the Sorbonne in 1866, attended lectures, did autopsies, and studied histology before entering medical school. This exposed her to the exciting work of Charcot’s clinic and other Frenchmen studying the neuropathology of poliomyelitis, and aroused her pathology and physiology interests. (Returning to the United States in 1873, Mary Putnam opened her internal medicine practice in New York City and married Dr. Abraham Jacobi who later became the father and founder of American pediatrics.)

As to treatment of polio, Dr. Mary Jacobi followed the time honoured medieval remedies (ice applied to spine internally or subcutaneously in order to divert blood circulation to the surface, mercury ointment rubbed in along the spine, followed by blisters and treatment with iodides, and with electrical stimulation starting one week after paralysis). It took a long time before more effective approaches were devised.

Clinical medicine had come of age worldwide, and poliomyelitis was swept along in that movement. Recognition of polio occurring in adolescents and adults, its infectious nature, and the presence of epidemics fuelled the explosive clinical understanding of poliomyelitis. Scandinavia was the site of the first polio epidemic.

Public health records reveal the first epidemic was in 1868 in Norway, near Oslo. The second occurred in 1881 in Umeo in northern Sweden. Epidemics were also beginning to be reported outside Scandinavia. France had an epidemic in 1886.

Late-Nineteenth Centuries…

and

Early-Twentieth

Scandinavia took center stage for advances in clinical studies of polio from 1890 to 1914. Stockholm pediatrician Oskar Medin (thoroughly reliable, articulate and experienced) gave a convincing and comprehensive presentation on the clinical features of the disease to the Tenth

International Medical Congress held in Berlin in 1890. It was Medin who first expressed the view that there exists a systemic stage in the beginning – minor symptoms and signs such as slight fever and malaise signified a generalized process, which coincidentally and later was occasionally followed by serious damage to the central nervous system that almost amounted to a complication.

Medin possessed that intangible quality that makes a great clinician, and when the suggestion was made that he deserved a place in the history of infantile paralysis, there was quick response – hence the name Heine-Medin disease. Although it may have been satisfying nomenclature, a disease as common as poliomyelitis could not remain designated by proper names for long.

Physicians and pediatricians from far and wide were surprised that they should have had to put to use so promptly the information about epidemic poliomyelitis that Medin had supplied. The world did not have a long wait for another epidemic – just three or four years. This time it came to North America.

The first polio epidemic in America was in Vermont, summer 1893 (26 cases), but the first substantial epidemic was in Vermont in 1894 (132 cases) and was the largest reported in one year anywhere in the world. (An outbreak even half that size would have been the largest.) It was the first large epidemic to be studied systematically by a full-time local public health official, Dr. Charles Caverly. History also credits him as among the first to recognised the occurrence of a few nonparalytic cases.

Like in Scandinavia, American epidemiological phenomenon of ‘infantile’ paralysis revealed an epidemic in sparsely populated area and a shift to increasingly older children and adults afflicted during polio epidemics. It is suggested that the Vermont epidemic could have been anticipated by the polio cases in nearby Boston the previous summer, interrupted by the cold weather and starting up in spring or summer in nearby territory. Also, the ‘contagious’ and ‘infectious’ causes of the disease was not yet recognised.

How the disease spread throughout the body and the community came under intense scrutiny during the devastating 1905 Swedish epidemic (1,031 cases). Ivar Wickman, a pupil and ardent admirer of Medin, systematically studied the ‘contagious’ aspect of this epidemic. Included in his case count were abortive and non paralytic cases as well as those with paralysis. He was the first to grasp the implications of observing the infection sometimes missed the central nervous system altogether, and the first to realize that abortive cases might equal or exceed paralytic ones and that they had a profound significance on the spread of human poliomyelitis.

By physically going door-to-door interviewing residents in order to trace the spread of the disease through abortive and paralytic cases throughout the hot summer of the 1905 outbreak, Wickman was able to designate a local school as the primary site from which the infection disseminated. Striking was the relationship between roads and railways and the spread of that epidemic.

Wickman concluded correctly that poliomyelitis must be regarded as a highly contagious disease, that mild cases should be considered along with the severe, that the disease was not entirely or even chiefly a disease of the central nervous system, that polio spread primarily through the median of subclinical infections, and that the incubation period averaged 3 to 4 days measured from the time of exposure to the beginning of the minor illness.

The next recorded polio epidemic was in 1907 in New York City (750 to 1200 cases). The NY Neurological Society appointed a 12-member committee, composed of the foremost authorities in the country, to study it. Polio outbreaks in the US sharply rose from 1908- 1912. The committee’s report was published in 1910 and incorporated medical advances made during the interim.

Simon Flexnor, first director of the prestigious and well-endowed Rockefeller Institute for Medical Research created in 1903, was a key participant of that committee and changed the course of medical history. Having discovered the bacillus organism responsible for dysentery in 1900 in the Philippines and formerly chairman of the Federal Plague Commission that investigated the bubonic plague of 1901 in San Francisco’s China district, Flexnor was a champion of the experimental pathological laboratory for solving infectious disease problems. Infantile paralysis was the ideal disease that would allow him to realize his goal – advancing the fields of bacteriology, pathology, and immunology and establish medicine on a sound scientific basis.

The dream that scientific medicine would conquer the disease seemed near realization.

Discovery of the polio virus, announced December 18th 1908, at a medical meeting in Vienna by immunologist Karl Landsteiner, M.D. and his assistant E. Popper, made that dream even more of a reality. As of that point in time, only a few viruses had been detected as agents of human or animal diseases – the viruses of smallpox and vaccinia, rabies and foot-and-mouth disease.

The use of tissue cultures for the growth of viruses was unknown until Landsteiner and Popper demonstrated microscopic slides of human and monkey spinal cords, all showing the histological picture of acute poliomyelitis and suggesting an invisible virus as the cause of poliomyelitis, an opinion soon confirmed by

other	experiments.	By	late	1909 the	the viral
microbiological	world	accepted
etiology	of	poliomyelitis.	Interestingly,
experimental pathology on the polio virus
established	the	fundamental	clinical

epidemiological truths Wickman earlier discovered.

Continuation of this “Poliomyelitis ‘History’ Summary” will be included in future newsletters.

Our thanks to Phyllis Hartke, President of San Francisco Bay Area Polio Survivors, who support the work we are doing by joining as a Life Member of the Lincolnshire Post Polio Network on behalf of her Support Group.

Thursday, Sept. 27, 2001 Gaps Seen in Evacuation for Disabled

NEW YORK (AP) It’s one of the best-known stories of the World Trade Center disaster: Michael Benfante and a friend plucking a woman from her wheelchair in a 68th-floor office and bringing her to safety.

Benfante, 36, recalled that when he encountered the woman, there was a lightweight emergency chair folded up nearby that was designed for getting a disabled person down stairs.

But “nobody was doing anything,” he said. So he unfolded the chair and strapped the woman in. While the chair was designed to be mobile, he said he and a friend decided to simply carry her in it because she was light.

end of excerpt.

The Fire Alarm sounded at 1.30 a.m. on 30th September at the IBIS Hotel in Lincoln.

Members visiting from afar for our Annual General Meeting were staying at the IBIS Hotel in Lincoln. Mary who was in the disabled room nearest to the front doors with a sounder not only in her room but immediately outside was shocked into grabbing her crutches and was first out of the hotel struggling to walk without her calliper and shoes attired only in the lightweight shortie items she had been able to carry in her rucksack as she had travelled down from Lancaster by train.

The hotel provided sheets to those who needed to cover up a bit more and all were told to go across to the hotel next door. Luckily David had brought his car keys with him and was able to drive Mary across the car park to the other hotel. She could not have walked that distance without her calliper and shoes of carry them and use her crutches. The lighter side of Mary’s arrival with Karen holding her ‘sheet train’ was the astonished look on the face of a still wedding dress attired very drunk bride.

Not only did our members have the problem of how do you move without your calipers and special shoes on, but one of our members did not leave the hotel. Denise had put earplugs in slept right through the whole episode. Despite the concern of the rest of our members the hotel were unable to help them specifically because no-one knew her last name or room number. I could not afford to stay this year and folks had booked direct and we had not made a list of members and room numbers this time. We have spoken to the Hotel continued on page 24.

continued from page 19… and in future we have agreed that all staying should be in adjacent ground floor rooms. That we make a list of names, room numbers and where help is needed and that the hotel and each person staying have a copy of this. Anyone needing help will be advised separately on booking in what to do if the Fire Alarm goes off.

Staying at two Travelodges in the last week we found not only a Do not Disturb sign but also a sign to put outside the room if you would need help in the event of an evacuation.

Before we retire at night we should think ahead. Can I quickly put on enough to keep me warm, are the aids that I might need easily accessible, and are my neighbours (or those with me, or where I am staying) aware that I need help and what that entails.

Contact your local Fire Service for advice for your

REST, PACING AND TIMING Grace R. Young, MA, OTR

<gryoung@bigfoot.com>

Fatigue and pain must be respected. Overuse to muscles is not always apparent while it is occurring. Muscle pain is a warning signal that the muscles have been overused. The damage accumulates over a period of time and may not become obvious until you lose the ability to do an activity which was previously possible.

REST

Try to rest at least one hour during the day. If you work and resting at lunchtime is not possible, take a one-hour rest immediately after work. This will make your evening activities more productive and enjoyable.

Lie down to rest so your back doesn’t have to support your body weight. Sitting takes 1/3 more energy than reclining. If you want to read use an overhead book holder so your hand and arm muscles won’t stay tense. You can listen to music, practice visualization, or meditate; the point is to allow all the muscles in your body to relax.

PACING

Have you had days when you felt so good that you took on an ambitious project and kept pushing yourself so you wouldn’t lose momentum? Were you incapacitated for a few days after that? It is tempting to overdo on your good days. However, you’ll be more productive over-all if you plan your activities for a balanced lifestyle.

Prolonged activities such as cleaning house or gardening, can leave you exhausted for the rest of the day unless you break them up into short segments with rest breaks in between. Before starting an extended activity, decide how long you will work at it and allow a 15-minute rest break every 30 minutes. Use a kitchen timer to let you know when to stop working and when to start up again.

Alternate light and heavy tasks throughout the week. Split your ambitious projects into daily segments throughout the week, and stick to your plan no matter how good you feel on any particular day. Plan fewer activities for the days when evening activities are on the agenda.

TIMING

You may have different levels of pain and fatigue at various times of the day. Activities which are simple to perform in the morning may be difficult later in the day, or vice versa. For example, if cooking supper in the late afternoon is too stressful, prepare most of it in the morning, to be reheated later.

HOW CAN YOU JUDGE IF AN ACTIVITY IS TOO STRESSFUL?

The easiest sign is a feeling of fatigue while you are in the midst of the activity. This seems obvious but many of us do not pay attention to our body. If the level of fatigue is out of proportion to the level of activity, the activity may be too stressful even if your mind says it should not be.

If there is a change in the quality of movement. For example, you develop a tremor or “jerkiness” in your motions while performing the activity.

If there is a change in the quantity of movement; that is, decreased range of motion. For example, you can usually lift your arm to a certain height but that height lessens as you continue the activity.

If you start to use compensatory movements. For example, you “hunch” your shoulder in order to raise your arm, or you swing your leg out to the side instead of flexing at the hip.

LETTERS TO THE EDITOR… –

The main subject of this letter is to congratulate all members of the Lincolnshire Post Polio Network for yet another of the amazing meetings I have had the luck to attend this year.

Your AGM was so positive in every aspect. It was a real inspiration to those of us who have been struggling for years against insurmountable odds, including widespread disbelief, medical arrogance and degrading financial statue.

It was a wonderful lesson in observation of the difference (if any) between the so-called ‘ME’ and ‘PPS’ peoples ability to remain ‘Active and Independent.

I woke this morning with renewed hope for the future – can’t say when I last experienced that. Thanks a million! Betty.

[with permission excerpt from a long letter from Dr. E. G. Dowsett – A Life Member.}

[Editors note – The following two articles are taken from other Post Polio Support Group Newsletters. Sharing information across the world.] The following two articles deal with pain. This one is being answered by Dr. Jacqueline Perry, a pioneer researcher in PostPolio Syndrome from Ranchos Los Amigos, California.

QUESTION:-

WHAT TREATMENT DO YOU RECOMMEND FOR MUSCLE PAIN?

ANSWER:– Every time a muscle contracts it must then repair itself and refuel. When people with PPS are tired but continue to push themselves, the muscles fatigue more quickly so the system gets overused. Following fatigue is pain, which is also a sign of overuse. I recommend cutting back on activities to a low enough level so there is no pain. If needed, PPS people may have to rest for ten minutes every hour.

Pain is a sign of injury. The first reaction to injury is inflammation, so I suggest the use of anti-inflammatory drugs (NSAIDs) to reduce the inflammation. I do not order other pain medications because they mask the pain. Patients are also warned to avoid using muscle relaxants. (NSAID: non-steroid antiinflammatory drugs.)

Heat is good for muscle pain because it increases circulation. However, I prefer a two minute ice massage because it not only increases circulation but it also relaxes the tissues. The immediate reaction to ice is blood vessel constriction. There is a second reaction of small vessel dilation, which increases the local circulation.

Since pain is a sign of injury, I tell patients to adjust their lifestyle until there is no pain. I follow the same rules myself. I am no longer at Rancho Los Amigos Med Center 48 hours per week. When I get tired I go home and rest. Then I may return later in the day.

In order to keep on doing things, polio survivors must not do so much. They need to reduce strain on their muscles by modifying their lifestyle and use mechanical assistance when appropriate.

Reprinted from Rancho Los Amigos Post-Polio Support Group, May 2000; reprinted from Polio Heroes of TN, June 2001

The following is also reprinted from Polio Heroes of TN, June 2001; reprinted from Echo News, May/June 2001

A REAL PAIN IN THE NECK An Editorial By Charles N. Beaton

My daughter works for a major trauma center here in the valley. She tells me they have done some surgery on four polio survivors within the last month or so.

These people had developed problems in their necks, osteophytes, etc.

When they had an MRI, they were found to have developed a syrinx (pronounced seer inx), which is a false Ventricle or pocket of Cerebral Spinal Fluid (CSF) within the spinal column.

The question was if the syrinx had led to many of the problems of weakness or sensory changes in the upper extremities.

The four patients on which they did the shunting procedure have all had improvements in their upper body strength.

One of my daughter’s neuro-surgeons asked her if I had had an MRI, because it had been found that many polio survivors had developed a syrinx. This neurosurgeon recommended that polio survivors consult with their primary care physicians to see if an MRI would be advisable.

My daughter cautioned me about unwanted surgery, but thought our membership would be interested in knowing about the possibility of polio patients developing a syrinx and the possibility of alleviating the upper torso weakness with a shunt surgical procedure.

If any of you have found evidence of a syrinx, we would appreciate hearing from you and having the opportunity to share information with you.

I can be reached at Polio Echo,

or directly at my home address:- Charles Beaton,

3208 West Cactus Road,

Phoenix, AZ 85029-2327.

My email address is:- cnbeaton@juno.com.

specific needs. Also Vol. 1 – Issue 9 – January 1998.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – <membership@lincolnshirepostpolio.org.uk> and Requests for Information Packs, Leaflets, copies of articles to

Hon. Sec. Wendy Grimmitt <Hon.Sec@lincolnshirepostpolio.org.uk> 12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

European Membership – LM £125 – Member £12.50 a year – Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail. (US$ checks to Lincs PPN. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA)

Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to enquires@ or newsletter@ – lincolnshirepostpolio.org.uk

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – December 2001

Articles for publication by November 5th – Publication date 5.12.2001

All Email addresses – @lincolnshirepostpolio.org.uk Founder & Chair – Hilary Hallam – hilary.hallam@

Vice Chair – Janice Eary – janice.eary@

Vice Chairman/WebSite Administration, Chris Salter – chris.salter@

Honorary Secretary – Wendy Grimmitt – wendy.grimmitt@ Honorary Treasurer – Frank Grimmitt – frank.grimmitt@ Fund Raiser – Len Van Zyl – len.vanzyl@

Committee Members – phil.bilton@ – john.eary@ – ted.hutchinson@

MEETINGS.

LINCOLN AREA – OCTOBER 27th. Saturday October 27th 2001 – 1.30 to 4.00

Ruston Marconi Sports Ground, Lincoln on A1434. MESH (ME Self Help Group) Lincoln invite members to attend a talk by Dr. Michael Midgley author of booklet A Practical Guide to Living with ME – the adventure of a doctor living with ME for 30 years. £1.

BRISTOL AREA – NOVEMBER 8/9th.

Meet with Hilary and Richard and other local members.

We will be in Bristol from about 2.00 on Friday the 9th November till 1.00 p.m. on the 10th November.

If you would like to meet up, watch a presentation on PPS from a Polio Survivors Point of View then please get in touch so that firm arrangements can be made. If enough members are interested there is a possibility of a talk by at least one other speaker.

Advertise your meetings/get-togethers here.

Linc Pin Volume 3 Issue 7 Read More »

Linc Pin Volume 3 Issue 6

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 6 – August 2001

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

Editorial by Hilary Hallam

page 2

Full Information on our

Annual General Meeting and Afternoon Events Saturday September 29th 2001.

page 3

The Neurological Alliance / MS Society Day at Earls Court June 20th 2001 One Amazing Meeting! by Dr. E. G. Dowsett, MB ChB, Dip.Bact.

pages 4 and 5

Breathing Problems of Polio Survivors including Thoughts from Peter C. Gay, MD

Joan L. Headley, MS, Executive Director, GINI, International Polio Network

followed by

My Journey to a Good Night’s Sleep – Marian Gray, Oakland, California My Search for the Solution – Jean B. Davis, Albany, Georgia

reprinted with permission from the IPN Polio Network News

pages 6 to 17

Letters to the Editor – Merseyside – Cornwall – Hampshire

page 17

EATING WELL EASILY PART 1 by Virginia Holland

pages 18 – 19

A Medical Alphabet and Contact Information page 20.

Survey Results and Return Slip are included as separate item.

Editorial by Hilary Hallam.

LincPIN. The Lincolnshire Post-Polio Information Newsletters are intended to together provide a comprehensive set of articles on post polio issues. This newsletter – No. 30 – contains as promised a long article on respiratory problems. I apologise to those of you who may not want to read it all, however, we have been asked repeatedly for information on this subject – see letters page (twice urgently this week). If you are having symptoms as on pages 6/7 then Health Professionals you are consulting may not be aware of this information. Many PPS groups have requested permission to reprint this in full for the same reason. See other comments on survey results attached.

All details of the Annual Meeting and Afternoon Events are on page 3 with a full page return slip which we do ask that you return whether or not you are able to come.

Polio is a neurological condition, there are only 300 neurologists in the UK and still we hear of neurologists with what appears to be a total lack of understanding of polio and its late effects. Two more in the last four days. One believes that we want to give up working, prefer to live on less money on benefits rather than what we were earning, miss out on the retirement we had planned, because we want to be disabled! Any health professional who really knows Polio Survivors – strong minded, hard working, over achieving, never stopping, don’t need any help – would not be making this statement. To help with an article and letter we would be grateful if you could answer the following question added to the return slip. If you have had to give up work early due to PPS, tell us why, what job you had, and has this resulted in a drop in income. The other neurologist has been quite vehement to the patient about the ‘bizarre’ manner in which she has to get herself about, suggesting that her problems are purely mental!

Meetings since the last newsletter. Lynn Hobday and I attended the Lincolnshire Modernisation Council Meeting as representatives of the Lincolnshire Neurological Alliance. This was extremely interesting where health professionals and user/carers were discussing many aspects of health issues as the changes take place from Health Authority to Trusts etc. Not only did we learn some very interesting facts but our views were being listened to and taken into account. We attended workshops on Primary Care, Access and the Elderly. We have asked for a workshop on Neurology for the next meeting in September. Lincolnshire Neurological Alliance are still in the process of forming an official committee and finalising the Constitution. The next meeting is in September.

On June 20th along with Dr. Betty Dowsett (her report pages 4 – 5) I attended the Neurological Alliance/MS Society Day in Earls Court. Due to PPS, energy levels from travelling and the London Traffic I had to spend part of the morning session setting up our display of laminated slides on PPS. Many health professionals from different parts of the country visited the stand. A lot of talking and handing out basic information leaflets. The afternoon session with talks from three Neurologists was very interesting, all three have multi disciplinary clinics – MS, MND and ME – and all reported that this was the best way to provide a good service. ‘Don’t knock neurologists’ was the comment, ‘morale is low, there are only 300 of us, we have many problems and the largest one is that we do not have enough funding to do the work we want.’ Their advice was that we should be speaking to Central and Local Government Health Departments to campaign for greater funding. The evening session where The Neurological Alliance launched their new report In Search of a Service – the experiences of people with neurological conditions was excellent. Many meetings are taking place over the next few months and we look forward to bringing you more information in our future newsletters.

The Mobility Roadshow at Crowthorne was very interesting – and sincere apologies to anyone who was there and did not meet up with us due to the rain, although we did make a tannoy announcement of our move. I had the opportunity to look for other automatic vehicles that might fit my needs as my VW Sharan is up for change in October. There are no cheaper high seat automatic vans that will take an electric scooter on a hoist available on Motability. I am therefore having to apply for a grant to pay the £4,500 deposit. One real surprise was that Salesmen were interested in speaking to me when I was standing up but it was a different tune when I was riding on my scooter and one even suggested that it would be better for him to speak to the person who was going to drive the vehicle! I had a lovely opportunity of a chat and cuddle with Polio Survivor Peter Field who has campaigned and worked for many different disability organisations for many years despite his decreasing mobility. I was saddened to hear of his death in an accident only a couple of weeks later. His achievements for disabled people over the years have been incredible. Our sincere condolences to his family.

I gave my presentation to health professionals and polio survivors at Hayle in Cornwall last week. The senior physio told me afterwards that she now had more understanding of polio muscles and that my ideas of pre appointment self-assessment and energy planning could be used across many neurological conditions and she would be introducing some of this in the near future.

Lincolnshire Post Polio Network Annual General Meeting and Afternoon Events. Saturday 29th September 2001

Ancaster Day Centre, Boundary Street, Lincoln, Lincolnshire.

AGM is 10.45 for an 11.15 start (Members only – room available for non members)

Buffet Salad Lunch will be served at approx. 12.40 p.m. Cost £3.50 to be paid in advance if possible.

Afternoon Events will commence at 1.45 p.m. Tea and Raffle at 3.45 – Question Time at 4.00 Room to be cleared by 5.00 p.m.

As in previous years join us socially at the Bar of the IBIS Hotel both Friday and Saturday evening.

Nominations or Offers to stand for any of the posts of Chairman, Vice Chairman, Secretary, Treasurer, Committee Member are requested. Reply slip is enclosed with this newsletter.

The Afternoon Events will consist of one or two short talks (awaiting confirmation of speaker) and then a choice of half hour workshops where you will be able to discuss your problems. The actual workshops will be finalised upon receipt of your attendance slip – please enter on this any subject that you would like to discuss. There will be a workshop for those who do not have Polio. Question Time – this is open to all members so please submit yours on the attendance return form. Any not covered during the day will be answered and all published in the next newsletter.

Ancaster Day Centre is just after house Number 32 on the left of Boundary Street in Lincoln. Turn in left and drive round the back to the Car Park, entrance at the far end. Boundary Street is west off the A1434. The A1423 goes from Lincoln to Newark from the Roundabout junction with the A15 (Lincoln to Sleaford). Coming from the north Boundary Street is about 100 yards south of the roundabout, after the Esso Station on your right, 15 yards before the Pedestrian Lights. Coming from the South it is past Walkers Crisps and a Gas Station on your left and just after the pedestrian lights.

Rooms have been pencilled in at the IBIS hotel which is behind the Pride of Lincoln (visible on the A46 Lincoln Bypass) and accessed via the first road left off Whisby Road. Please take care at the A46/Whisby Road Junction, it is extensively hatched to allow turning but the opposite road is offset.

Please contact the IBIS Hotel directly mentioning the Lincolnshire Post Polio Network on 01522 698333 All rooms are priced at £35 with Continental Breakfast available at a price of £3.95 each if wanted. They now have a snack and meal of the day menu but inform us that we can still bring in or have a Take Away sent in. A full meal service is available at the Pride of Lincoln about 30 yards across the Car Park. Please ring if you would like us to find you alternative cheaper closeby accommodation.

Families and friends are welcome. We will have leaflets and information available on What’s On in Lincoln. Close by to the IBIS Hotel are a Garden Centre with small Animal Park, the Whisby Nature Reserve with Exhibition Centre and Cafe, Doddington Hall and North Kesteven Sports Centre. In Lincoln itself there is the Cathedral and Castle both started in 1068, the Lincolnshire Life Museum, the Usher Art Gallery, the Lawn Visitors Centre, Roman Ruins and many shops.

A return slip is enclosed with this Newsletter. Please help us to organise this event by completing and returning this as soon as possible. We need to know if you can or cannot attend, if you wish or do not wish lunch, if you have any nominations or would like to offer yourself for a post on the committee, and if you have any questions that you would like put at Question Time. Any questions that we do not have time for will be answered and all will be published in the next newsletter.

We look forward to seeing as many of you as possible and will provide a full report with the next newsletter.

The Neurological Alliance / MS Society Day at Earls Court June 20th 2001 One Amazing Meeting!

Introduction. As a Life Member of the Lincolnshire Post Polio Network (as well as of 3 ME charities) I was able to attend the event of this organisation for the first time and found it a truly mass gathering of like-minded people with neurological disabilities and of their professional carers. The audience filled two enormous ballrooms and the foyer of a large hotel in Earls Court, London. The Neurological Alliance now represents some 50 charities supporting a widespread profile of chronic neurological conditions which currently affect over 3 million people in the UK. Their disabilities range from brain and spinal injuries and malignancies to stroke, epilepsy and congenital deformity and include conditions with which I am more familiar such as meningitis, MS, Parkinsons, Motor Neurone Disease, ME and the Post Polio Syndrome.

Patients and Professional Carers Working Together. To my astonishment, many of the smartly dressed, well spoken and obviously professional speakers and chairmen revealed themselves to be sufferers or carers of people with these devastating conditions. The impact of their self confidence and achievement was dramatic and gave us all new hope for the future. However, this hope will demand even closer co-operation between patients and professionals if sufferers and carers are to be given the choice and the control which they need over the services they receive (or hope to receive in the future).

The Patient User/Consumer Movement. This relies upon a long and hard won record of success based initially on the efforts of the keynote speaker (a sufferer from MS who was cofounder with Michael Young of the College of Health). She has long struggled to educate fellow patients about the corrosive imbalance of power between doctors and patients and the insidious erosion of patients’ rights within the NHS including the right to second opinion, the tacit withdrawal of the ‘patients charter’ and the insistence upon reliance on random controlled trials (RCT’s) as the gold standard of management while ‘quality of life’ is far more important in chronic neurological disease, in children and the elderly. We were reminded of the current fragmentation of the voluntary sector, their rivalry for meagre financial support, despite the fact that nowadays more funding for research is derived from volunteers than from the government.

Neurological Appointments should be a meeting between equals. There is a lot of excellent practice in the community and, for the third year the MS society distributed awards for above average performance and initiative to:- a) The Walton Centre, Liverpool, for its education modules on stress management, nutrition lifestyle and prevention of secondary disabilities after diagnosis and hospital discharge. b) Tree Tops Nursing Home, Colchester, for its special research programme which recognises the expertise of patients who contribute to these studies, who educate other patients and who were enabled to attend the conference and contribute to questions from the audience by means of special amplification. Entrance to the Nursing Home proved to be enabling rather than restrictive in the late stages of MS. c) The National Hospital for Nervous Diseases – for its dedication to the emotional and educational needs of newly diagnosed patients.

Medicine is an Art as well as a Science. The afternoon sessions were devoted to innovative medical practice by Consultant Neurologists of whom we were reminded, we have but 300 in the UK compared with some 10,000 in other European countries of similar size!

a) Colchester – where the Consultant Neurologist welcomes co-operation with support groups. He blames the current 2 year waiting list upon management by medical staff trained primarily in ‘Public Health’ rather than in general medical problems, but has somehow managed to set up efficient NEUROCARE programme for the common neurological disabilities – mainly MS. However, it seems that half his workload is derived from ‘medically unexplained’ conditions which do not come within his remit and cannot be helped. I very much suspect that the commonest neurological conditions in the UK today (including the late effects of ME and the Post Polio Syndrome) fall within this category! {Editors note – I spoke to this Neurologist later and he said that he would not be able to see Polio Survivors as he knew nothing of PPS and then thanked me for the information that I gave him]

b) Guys and St. Thomas’ and Kings College Hospitals – Consultant Neurologists have developed an MND Nurse led outreach service for long term secondary problems including pain, ventilation

requirements, gastrostomy, speech therapy and palliative care.

c) Harold Wood Hospital ME Centre – one of the founder members of the Neurological Alliance, where care for ME patients was initially linked too the pre-existing neuro care programmes for Parkinsonism and Tremor. ME, one of the commonest and most chronic neurological conditions in the UK, has a devastating effect of adolescents and is by far the most frequent cause of long term school absence. Many patients are severely ill and house bound or bed bound but, though they can be managed by conventional methods within the NHS, Harold Wood is the only charity which has taken on an in-patient and outpatient service. The cost of this illness runs into millions of pounds but, as yet, there is no NHS provision for patients. Tribute was paid to the early pioneers of the Harold Wood Centre.

Collaboration with a Wider Medical Audience. The evening session included a wine reception to mark the launch of the Neurological Alliance’s new report ‘In search of a service – the experiences of people with neurological conditions’ to which delegates from the 2001 World Congress of Neurology (held across the road at Earls Court) were cordially invited.

Poster Displays in the Foyer. A special mention must be made of the wonderful display provided by the Lincolnshire Post Polio Network. Despite having no speakers in the main sessions, this was the major focus of attention outside, offering the opportunity to view vivid illustrations of post polio problems, a comprehensive range of literature on the subject and an operative website display. There was also an opportunity to meet and discuss the problems of this illness with Hilary Hallam. As a long term patient she has achieved impressive improvement largely by her own efforts and must be considered one of the most knowledgeable persons in the UK in respect of the management of the Post Polio Syndrome – an illness for which no provision has yet been made by the NHS.

Summary. There are a great many lessons to be learnt from this conference in respect of the management of ME and the late effects of both ME and Poliomyelitis which are indistinguishable and may include secondary problems with Parkinsonism. The attempt to set up and to main specialised ME clinics has merely served to marginalise the disease and has induced many patients to make long journeys to the few geographically distant centres available, with resultant relapse and deterioration.

Only by means of co-operation and collaboration with other neurological charities can a properly conducted neurological assessment, followed by equal right of access to local rehabilitation facilities for all ME, Post Polio Patients and other similar neurological conditions be achieved in the near future.

Dr. E. G. Dowsett, MB ChB, Dip.Bact.

Honorary Consultant Microbiologist Basildon and Thurrock General Hospitals NHS Trust and member of The Chief Medical Officer’s Working Party on ME.

47 Drewsteignton, Shoeburyness, Essex SS3 8BA

THE TRUTH IN JUST 13 WORDS

Inside every older person is a younger person wondering what the hell happened.

Breathing Problems of Polio Survivors

Reprinted with permission

from GINI International Polio Network Polio Network News

Spring 2001, Volume 17, Number 2

People with neuromuscular disease such as post-polio often need help with breathing, not because there is something wrong with the lungs, but because the respiratory muscles may be weakened or paralyzed and the chest wall is stiff and inelastic. If scoliosis is present, the work of breathing may be even harder. Other conditions such as chronic obstructive pulmonary disease (COPD) and sleep apnea (obstructive, central, or mixed) may also be occurring. And, overlaying all of these factors, is the simple fact of aging.

How did acute poliomyelitis affect breathing? What is bulbar polio? What is spinal polio?

The poliovirus affected, in many different patterns, the nerve cells in the lower brain (bulbar) and spinal cord that control the muscles of the body. Poliovirus does not damage the lung tissue or the nerves to the airway muscle.

When the bulbar nerves were destroyed (bulbar polio), the muscles of the throat were weakened. This resulted in choking during eating and a diminished ability to cough.

When the spinal nerves were affected (spinal polio), muscles of the arms and legs, and trunk muscles needed for breathing and for taking a deep breath for coughing were weakened. Polio survivors may have had some combination of bulbar and spinal polio, so there may be corresponding throat muscle and limb/ respiratory muscle weakness. Involvement of the upper part of the spinal cord weakened the key breathing muscles – the diaphragm and chest musculature.

How does respiratory muscle weakness affect breathing?

The diaphragm is the key muscle for inspiration (breathing in). When it is weakened by polio, the work of breathing becomes harder, especially when a person is lying down. With each breath, the abdominal contents have to be pushed down, but when sitting upright, gravity assists the diaphragm by pulling the contents down. Polio survivors, especially those with scoliosis, compensate by breathing faster but more shallowly because they lack the muscle strength to stretch a stiff rib cage. They may also have smaller lung volumes that further reduce respiratory muscle efficiency and drastically increase the work of breathing. This can lead to underventilation and respiratory failure.

How does respiratory muscle weakness affect sleep?

Respiratory muscle weakness contributes to sleep-disordered breathing. During REM (rapid eye movement) sleep, relaxation of many voluntary muscles, including the shoulder, chest, and abdominal muscles, often occurs. And, these muscles are used to assist breathing when the diaphragm is weak. Consequently, a weak diaphragm has difficulty sustaining adequate breathing, especially when lying down. This leads to a decreased level of oxygen in the blood, or SaO2 desaturation. SaO2 desaturations can extend into non-REM sleep and contribute to arousals, inducing sleep fragmentation, and decreasing the amount of time in REM sleep. The quality of sleep deteriorates.

A polio survivor experiencing a combination of any signs and symptoms in the following list should immediately seek a respiratory evaluation, preferably by a pulmonary physician (pulmonologist) with experience in neuromuscular disease.

Shortness of breath on exertion (dyspnea)

Need to sleep sitting up (orthopnea)

Retention of carbon dioxide (CO2) morning headaches

poor concentration

and impaired intellectual function

Sleep disturbances

not feeling rested in the morning sleepiness during the day

dreams of being smothered and/or nightmares

restless and/or interrupted sleep fatigue or exhaustion from normal activities snoring

Claustrophobia and/or feeling that the air in the room is somehow bad

Anxiety

Difficulty in speaking for more than a short time

Quiet speech with fewer words per breath

Use of accessory muscles to breathe

Weak cough with increased susceptibility to respiratory infections and pneumonias

Are all polio survivors at risk for breathing problems?

No. Individuals who used an iron lung, or barely escaped one, during the acute phase should be aware of potential problems. Those survivors who did not need ventilatory assistance during the acute phase, but who had high spinal polio resulting in upper body weakness and/or diaphragm weakness, and those with scoliosis (sometimes referred to as chest wall deformity) may also be at risk.

Other factors contributing to breathing problems are asthma, COPD, smoking, obesity, and sleep apnea: either central, obstructive, or mixed.

Another compounding factor is diminished vital capacity (VC), which happens to everyone as they age.

Why do these problems often go unnoticed?

The reasons are varied and can be complex. The onset of respiratory problems is insidious, and this gives an individual time to become accustomed to each decrease in function. Thus, one is not immediately aware that anything is wrong, and a treating physician may not recognize the signs or be familiar with the option of home mechanical ventilation. The person’s spouse or family should be questioned about signs and symptoms, changes in activity levels and breathlessness, and sleeping patterns.

Additionally, facing breathing difficulties can be frightening, for both the survivor and their loved ones, and there can be a reluctance to address them. Sometimes this fear stems from inaccurate information about the problem and the solutions or from earlier polio-related experiences.

What is underventilation?

The alveoli in the lungs are tiny air sacs at the end of the respiratory tract where gas exchange with the blood occurs. In underventilation (medically known as chronic or global alveolar hypoventilation), the saturation of oxygen in the blood falls due to increased carbon dioxide (CO2). Normally the alveoli should clear most of the CO2 out with each breath. Instead, the CO2 accumulates (called hypercapnia), and thus there is decreased room in the alveoli for oxygen.

Hypercapnia and decreased oxygen saturation are the hallmarks of underventilation or hypoventilation. The signs and symptoms of underventilation usually appear first during sleep.

Some people seem to suddenly experience life -threatening respiratory failure due to CO2 accumulation (hypercapnia). They may not have been aware of gradually increasing symptoms and signs, particularly since they are often not physically active nor regularly monitored with simple pulmonary function tests. Polio survivors may think that they are breathing fine until an upper respiratory infection, which makes breathing in harder for everyone, causes serious problems, partially due to an ineffective cough and the inability to eliminate secretions.

Who is the most qualified to evaluate breathing problems?

Astute family physicians will order a referral to a pulmonologist, preferably one experienced in neuromuscular disease. Pulmonologists specialize in all breathing-related disorders, however, most focus on more acute problems such as intensive care. The pulmonologist who focuses on neuromuscular diseases understands that the problem is due more to respiratory muscle weakness and the restrictive nature of the disease rather than the lungs themselves.

The IVUN Resource Directory compiles a list of pulmonologists and respiratory health professionals who are knowledgeable about and committed to home care and long-term mechanical ventilation. It is available at www.post-polio.org/ivun/ or in hard copy from International Polio Network.

What tests will a pulmonologist order?

Pulmonary function tests can be performed in a physician’s office with a simple spirometer (an instrument for measuring the capacity of the lungs) or in a fully-equipped pulmonary function laboratory.

Pulmonary function tests should include:

Vital capacity (VC) both sitting and supine (lying down), FVC, FEV1. VC measures the total volume

of air one can breathe out completely after inhaling a full breath. VC is usually done

forced, as fast as possible, and is known as FVC. When this fast forced expiration is performed, the volume breathed out in the first second is known as FEV1. VC is sometimes done slowly and is called SVC. These tests can be done while standing, sitting, or supine. A drop in VC over 25% in the supine position indicates significant diaphragm weakness. When VC declines to <1 L (liter), underventilation often occurs. [LincPIN Editors note, there are two domes to our diaphragms, and it would be advisable if testing is also done with you lying on each side]

MIF and MEF. Maximum inspiratory force (MIF) and maximum expiratory force (MEF) are measured by breathing in and out with maximal effort, through a closed mouth tube attached to a pressure measuring device. This measurement reflects inspiratory and expiratory muscle strength.

Peak cough flow. In people who have had polio, cough is often not effective enough, due to respiratory muscle weakness. A weak cough can lead to poor secretion removal, increased respiratory infections, and pneumonia.

What is an ABG and should polio survivors who suspect breathing problems have one?

An arterial blood gas (ABG) should be ordered when VC falls or symptoms of underventilation develop. An ABG invasively measures levels of oxygen, carbon dioxide, and pH in the blood and assesses pulmonary gas exchange. A non -invasive measurement of oxygen saturation in the blood is pulse oximetry, but it is not as complete or sensitive as an ABG.

What is pulse oximetry?

The blood oxygen saturation can be measured noninvasively using a pulse oximeter. It is a probe placed usually on a highly oxygenated part of the body, such as the finger. Infrared light is released and analyzed by recording its changing absorption in the arterial blood. Nocturnal oximetry is becoming more useful in screening for abnormalities that often occur first during sleep. Some oximeters have a memory module to record 8-12 hours of oxygen and pulse rate data.

What is a sleep study and when is it necessary?

Sleep studies (formally known as polysomnography) are usually performed in a sleep laboratory over one or two nights to record multiple variables simultaneously, such as sleep stages, rapid eye movement (REM), snoring, airflow at the nose and mouth, arousals, heartbeat, chest wall breathing motion, and oxygen saturation, to assess sleep disorders (such as sleep apnea). These studies include EEG (brain wave), ECG (electrocardiogram), and often a video record of sleep movements.

Sleep studies are recommended for an individual exhibiting signs of nocturnal underventilation, but not daytime underventilation, or for asymptomatic individuals with a VC <1 to 1.5 L.

Sleep studies are often recommended to detect sleep apneas.

What is sleep apnea?

Defined as the lack of breathing through the nose and mouth for at least ten seconds, sleep apnea can be obstructive or central or mixed. Obstructive sleep apnea (OSA) occurs when tissues in the throat collapse and block airflow in and out of the lungs during sleep, although efforts to breathe continue. Central apnea occurs when the brain fails to send appropriate signals to the body to initiate breathing. There is neither airflow nor chest wall movement.

In sleep apnea, breathing ceases, oxygen in the blood decreases, arousal occurs, sleep ends, and breathing resumes. The individual then drifts back to sleep and another apnea occurs, with this cycle continuing throughout the night, resulting in hundreds of arousals from sleep.

OSA at first occurs when individuals sleep on their backs, but eventually apneic episodes are present with any sleep position. A number of factors make snoring and apnea worse, such as obesity and nasal obstruction. Smoking causes the lining of the upper airway to swell, alcohol and sedative drugs cause the muscles in the back of the upper airway to relax, and excessive weight decreases the size of the upper airway.

When there are night-time breathing problems in a person with neuromuscular disease, such as post-polio, they are more likely due to respiratory muscle weakness, rather than OSA. However, some individuals may have only OSA while others may have both respiratory muscle weakness and OSA.

What is the treatment for sleep apnea?

Sleep apnea is best treated with the use of a continuous positive pressure airway (CPAP) device to push the tongue out of the way and

keep the airway open during sleep. If underventilation and sleep apnea occur simultaneously, a bilevel positive pressure device is recommended to help improve ventilation and also keep the airway open.

What is CPAP?

CPAP stands for Continuous Positive Airway Pressure. Air flows continuously into the airway via the nose with use of a nasal mask. CPAP keeps the airway open, but does not adequately assist respiratory muscle activity.

CPAP is primarily used to treat obstructive sleep apnea, and thus is normally used only at night during sleep. CPAP units are not ventilators. Higher pressures may make exhaling uncomfortable and difficult. Newer CPAP units, called Auto CPAPs, automatically provide varying levels of pressure based on the individual’s needs during the night. Because OSA is prevalent among the general population, many companies offer CPAP units.

What is mechanical ventilation (MV)?

Mechanical ventilation is the use of machines to help people breathe when they are unable to breathe sufficiently on their own. It is most often used for a few days in a hospital setting, when people are recovering from surgery or during a serious illness. However, some people may be unable to breathe on their own after the acute illness is over and may require long-term MV. Other people may have a stable, chronic condition that prevents them from breathing on their own; they may need to use a ventilator only at night or both at night and during the day.

Assisted breathing through mechanical ventilation can help people sleep better and result in improved lung function during the day. MV can restore the gas exchange and prevent respiratory failure.

When is mechanical ventilation an option?

A general guideline, but not a rule, suggests that mechanical ventilation be initiated when there is a 50% decline in VC or a VC of under 1 L. Each symptomatic survivor needs a comprehensive evaluation by a knowledgeable physician to determine when to start MV. This is especially true of the survivors of bulbar poliomyelitis. Mechanical ventilation helps rest the respiratory muscles, resets the sensitivity to CO2 of the controller in the brain, and improves pulmonary mechanics by providing more functional lung expansion.

Is exercise a treatment option?

Chest expansion exercises may help keep the chest wall more elastic and avoid loss of lung volume. There are four ways this can be done: with an Ambu-type resuscitation bag, using a volume ventilator for air stacking, using glossopharyngeal (frog) breathing, or using an IPPB (intermittent positive pressure breathing) machine.

If I need mechanical ventilation, what are the options?

The older technology of negative pressure ventilation, which developed during the polio epidemics to keep respiratory polio survivors alive, has given way to the newer technology of positive pressure ventilation.

Negative pressure ventilators apply intermittent negative pressure (like a vacuum) to the chest and abdomen by means of an iron lung or Porta-Lung, a chest shell (cuirass), or a form of body jacket or wrap. Some polio survivors still use the iron lung, Porta-Lung, or cuirass.

The pneumobelt is also still used. It is an inflatable corset around the abdomen which acts by pressing on the abdomen to augment exhalation. Inspiration is not assisted. The pneumobelt can only be used in the upright, seated position and does not work if one is either underweight or overweight.

Positive pressure ventilation uses a bilevel pressure support device or a volume ventilator to deliver air noninvasively via a face mask, nasal mask, nasal pillows, mouthpiece, lipseal, or oro-nasal combination, called noninvasive positive pressure ventilation (NPPV). Positive pressure can also be delivered invasively through a tracheostomy tube (TPPV).

What is the difference between a bilevel device and a volume ventilator?

Bilevel pressure devices continuously deliver air, but the inspiratory pressure can be adjusted separately from the expiratory pressure. Bilevel devices are also used with a face or nasal mask or nasal pillows, and, like CPAP, used mainly at night. However, bilevel devices can only deliver a certain amount of pressure that may not be enough for people with respiratory muscle weakness and underventilation. There are many bilevel pressure devices on the market, but the only one that can be truly called BiPAP® is from Respironics.

Compared with volume ventilators, bilevel

devices are lightweight, less expensive, easier to use, and adjust better to leaks. However, disadvantages include not being well-suited for tracheostomy ventilation, having no internal battery, not as commonly used with an external battery, may be noisier, and the expiratory pressure is unnecessary for some people and may cause thoracic discomfort. Examples of bilevel devices include Respironics Bi-PAP® S/ T and BiPAP® Synchrony™; Puritan Bennett KnightStar 330® and KnightStar 320®; ResMed VPAP® II ST; and Breas PV102.

Volume ventilators deliver a pre-set volume of air. These machines can deliver much more air than bilevel devices, and thus enable deeper breaths for improved coughing and air stacking. They may be necessary for people with poor lung elasticity, such as those with pulmonary fibrosis, and stiff chest walls, as with kyphoscoliosis, when bilevel is not enough. Volume ventilators, though larger and heavier and more expensive than bilevel units, are quieter, have more alarm features, overcome airway secretions and resistance, have an internal battery, work from battery power easier, can be used for 24 hours, and are well-suited for tracheostomy use.

Examples of volume ventilators include the LP6 Plus, LP10, and Achieva® from Puritan Bennett, PLV®-100 and PLV®-102 from Respironics, TBird® Legacy from Thermo Respiratory Alternate Care, and PV501 from Breas.

A new generation of ventilator technology has produced the LTV™ series from Pulmonetic Systems, Inc. These new ventilators are compressorless and run by turbines. They are very small – about the size of a laptop computer – and lightweight, about 13 lbs., but more expensive. They also have the capability to offer both volume and pressure support.

Who decides which equipment to use? How?

The answers to these questions focus on whether there is breathing muscle weakness or whether there are reasonably normal breathing muscles but obstructive sleep apnea (OSA).

If there is night-time breathing abnormality due to muscle weakness, it is best treated with a machine that assists ventilation, such as the aforementioned bilevel pressure device or volume ventilator.

If the upper airway tends to close off during sleep, OSA occurs. This is often successfully treated by continuous positive airway pressure (CPAP* which delivers a constant flow of air to keep the airway open. It is certainly possible to have weakness in the throat/pharyngeal area that produces OSA, without weakness of the breathing muscles. If this is the case, CPAP is the appropriate treatment.

Whether to use a portable volume ventilator or bilevel pressure device is an important decision. Sometimes the choice reflects the experience and training of the pulmonologist or respiratory therapist. Often cost is a factor. In Europe, the costs of the bilevel pressure devices and the volume ventilators are not as disproportionate as they are in the United States.

The ventilator which is most comfortable for the user and fits his or her individual ventilatory needs best should be the overriding choice. The physician, respiratory therapist, and ventilator user should collaborate on determining the best system, although ventilator users are not often given the opportunity to try different ventilators and systems.

Where is the best location to start noninvasive positive pressure ventilation (NPPV)?

Generally, NPPV is started in the home by a respiratory therapist from the home health care agency or durable medical equipment (DME) provider, as ordered by the physician (who is not present). However, home health respiratory therapists have limited time, and the home health care agency does not receive reimbursement for the time needed. The therapist usually cannot demonstrate the whole range of equipment and interface options available. Follow-up is needed repeatedly in the first months to ensure that the equipment and interfaces are comfortable and working properly to achieve optimal benefit.

The use of NPPV can also be initiated as part of hospital discharge, where there should be more time to do it properly. However, many pulmonary critical care physicians are highly ICU-focused, and they and the respiratory therapy staff may not have the experience and interest needed to get optimal results.

When possible, the best approach may be for the individual to visit the home MV unit of a medical center for daytime assessment and for teaching the use of NPPV. The person can try various equipment and interfaces to see which would work best under the guidance of an experienced physician and respiratory therapist. The day visits can be repeated as

needed for setup and followup. This is in addition to the home health care/DME company’s home visits after the system is selected and ordered.

What does a respiratory therapist do?

Respiratory therapists work under the direction of a physician, usually in hospital settings where they perform intensive care, critical care, and neonatal procedures. Polio survivors usually interact with a respiratory therapist in their physicians’ offices and/or in their homes during visits from a therapist hired by a home health agency or a home medical equipment supply company (Apria, Lincare, etc.).

Respiratory therapists perform procedures that are both diagnostic and therapeutic. Some of these activities include: taking arterial blood gas (ABG) specimens and analyzing them to determine levels of oxygen, carbon dioxide, and other gases; measuring the capacity of the lungs to determine if there is impaired function; and studying disruptive sleep patterns. Respiratory therapists help set up and maintain the various equipment (CPAP and bilevel devices, ventilators) to assist breathing, adjust the settings, adjust the mask or other interface, instruct in their use, and monitor compliance.

What is an interface?

An interface connects the tubing from the volume ventilator, bilevel device, or CPAP to the person using it. Examples include nasal or facial masks, nasal pillows, lipseal, mouthpiece, or tracheostomy. Often the individual is handed only one mask to try by a respiratory therapist from a home health care company, but several different masks may need to be tried in order to find one that fits properly. Many people do best when they can choose at least two (nasal) interfaces that are comfortable and rotate between them. Individuals can use a mouthpiece if they have nasal congestion due to a cold.

Adapting to and making adjustments to an interface is critical and often requires patience and determination. Many users creatively adapt their masks to achieve the best fit.

What is a tracheostomy and when is it necessary?

A tracheostomy is an artificial airway created during a surgical operation called a tracheotomy. A tracheostomy may be necessary for polio survivors who cannot tolerate noninvasive ventilation, for those who can no longer be adequately ventilated noninvasively, and for those who need ventilation more than 20 hours per day. Other considerations include a severely impaired cough and inability to clear secretions, and significant swallowing problems. Some polio survivors who need 24-hour ventilation may prefer to use noninvasive ventilation.

The decision to undergo a tracheotomy is a serious one and should be made by a fully informed individual along with caregivers in consultation with the physician.

How can a polio survivor improve cough?

Retained secretions in people who have impaired coughing ability can turn a common cold into pneumonia. To improve cough, there are two forms of assisted coughing.

Manually assisted coughing involves another person administering a thrust to the chest and abdomen of the individual with neuromuscular disease immediately after that individual takes a big breath.

Mechanically assisted coughing can be performed with the CoughAssist™ by J.H. Emerson Company. The CoughAssist applies positive pressure to provide a deep breath in, then shifts rapidly to negative pressure to create a high flow out, as with a normal cough.

What is cor pulmonale?

Cor pulmonale (right-sided heart failure) can occur in post-polio and in other diagnoses, such as COPD. In both, the low oxygen level causes pulmonary hypertension, liver enlargement, and swollen feet. Cor pulmonale is detected by a careful physician examination, keeping respiratory muscle weakness in mind.

What about oxygen?

Tony Oppenheimer, MD, retired physician in pulmonary and critical care medicine from Southern California Permanente Medical Group, cautions, “Administering oxygen does not provide assistance to the weakening respiratory muscles, but gives both the patient and the doctor the false impression that appropriate treatment is being provided. Underventilation is mistaken for an oxygen transfer problem. Indeed, administering oxygen can mask the problem.

“Also there is a danger of causing respiratory depression by giving oxygen. It will improve the oxygen saturation, but not the underventilation. It may increase the danger of dying of sudden respiratory failure.

“Some situations may require administering oxygen, such as cor pulmonale or pneumonia due to infection or aspiration. If this occurs in people with respiratory muscle weakness and hypoventilation, then it is important to provide both assisted ventilation and supplemental oxygen, and use ABGs to monitor them.”

A useful analogy from Lisa S. Krivickas, MD, Spaulding Rehabilitation Hospital, Boston, in regard to people with respiratory failure from neuromuscular disease is that the lungs are like deflated balloons that are not strong enough to inflate.

To inflate the balloon, mechanical assistance to force air into the balloon is needed. Blowing oxygen across the mouth of the balloon (the equivalent of using supplementary oxygen delivered by nasal cannula) will do nothing to inflate the balloon.

References

American College of Chest Physicians. (1998). Mechanical ventilation beyond the intensive care unit: report of a consensus conference of the American College of Chest Physicians. Chest, 113, Supplement, 289S-344S.

Bach, J.R. (1999). Guide to the evaluation and management of neuromuscular disease. Philadelphia, PA: Hanley & Belfus, Inc.

Bach, J.R. (1996). Pulmonary rehabilitation: The obstructive and paralytic conditions. Philadelphia, PA: Hanley & Belfus, Inc.

Faber, H.K. & Amoss, H.L. (1956). Acute poliomyelitis. In Tice’s Practice of Medicine. 335-359.

Fischer, J.R. & Headley, J.L. (1995). Post-polio breathing and sleep problems. IVUN News, 11 (4), 2.

Gay, P., & Edmonds, L. (1995). Severe hypercapnia after low-flow oxygen therapy in patients with neuromuscular disease and diaphragmatic dysfunction. Mayo Clinic Proceedings, 70 (4), 327-330.

Hill, N.S. (2001). Long-term mechanical ventilation. New York, NY: Marcel Dekker, Inc. Hsu, A. & Staats, B. (1998). “Postpolio” sequelae and sleep-related disordered breathing. Mayo Clinic Proceedings, 73, 216- 224.

Maynard, F. & Headley, J. (1999). Handbook on the late effects of poliomyelitis for physicians and survivors. Saint Louis, MO: Gazette International Networking Institute.

Oppenheimer, E.A. (2000). Oxygen is NOT for hypoventilation in neuromuscular disease. IVUN News, 14 (1), 4-5.

Romaker, A. (1995). New breathing problems in aging polio survivors: respiratory muscle weakness. Polio Network News, 11 (4), 1, 7- 8.

Thoughts from Peter C. Gay, MD Associate Professor, Critical Care and Sleep Medicine, Mayo Graduate School of Medicine, Rochester, Minnesota USA (507-284-5398)

Presented at GINI’s Eighth International Post-Polio

& Independent Living Conference, June 2000

On weakness … “The vernacular defining postpolio syndrome includes non-specific weakness. Many physicians overlook the fact that polio survivors are describing respiratory problems.”

On symptoms … “The important thing to recognize is that the vast number of polio survivors do not necessarily have lung disease, per se. The problem usually is the inadequate way they move air in and out of their lungs.

“It is important to determine which symptoms are related to breathing, which are related to the heart, and which are related to deconditioning. Even Olympic athletes can become deconditioned.”

On abdominal paradox … “Many polio survivors have difficulty with breathing while lying. Physicians can assess this by observing the abdominal paradox which occurs when the abdomen inappropriately collapses inward as the chest expands during inhalation.

“Normally when one lies down and takes a deep breath, the diaphragm pushes down and the abdomen pushes outward. If the diaphragm is very weak and the chest muscles are doing most of the work, then the abdomen is going to paradoxically collapse. This is a very specific sign that a physician can recognize by placing a hand on the abdomen and asking the patient to take a deep breath. If the abdomen collapses during inspiration, it is a sign of a weak diaphragm. During sleep, this is critical to understand.”

On deterioration of quality of sleep … “The sleepier that people get, the more they want to sleep, and the more they are tortured by the need to wake up to breathe.”

On sleep apnea … “The ‘I won’t breathe’ form is central sleep apnea. The controller, during REM sleep particularly, stops firing impulses adequate to make one breathe. It is important to demonstrate the difference between these because different equipment is needed for each form.

“The ‘I can’t breathe because the upper airway is blocked’ form is obstructive sleep apnea. It is most common in males and is due to being overweight and to the size of the neck and structure of the upper airway. In post-polio patients, the weakness of the muscles of the mouth can be such that, when lying on one’s back, the muscles can block off and cause snoring.”

On night-time assisted ventilation … “Breathing at night is like driving. You need power steering. You still want to drive, but it feels like you are driving a big Mack truck. You need a device that allows you to turn that steering wheel more easily.”

On using oxygen … “In normal sleep, sensitivity to CO2 is reduced so that we all shallow breathe during REM sleep. Elevated CO2 during REM sleep lets people stop breathing or slow breathe until the oxygen saturation levels get so low that the brain alarms to say, ‘Wake up!’ From that standpoint, supplemental oxygen tends to be a poison to people with this problem who are not also getting ventilation at the same time, because they lose the low O2 wakeup alarm.”

Polio Network News Editor’s Comments

With special thanks to Judith Raymond Fischer, volunteer editor of IVUN News, this issue of Polio Network News features the breathing problems of polio survivors.

Why dedicate a whole issue to this subject?

#1 – A common misconception about home mechanical ventilation is that it is the same as being in an ICU – unconscious, intubated, and connected to a large hospital ventilator – as depicted on popular medical TV shows. Using a ventilator at home is very different, as described by polio survivors Jean Davis and Marion Gray, who sent photographs of their satisfied and well-ventilated selves.

#2 – It is the one aspect of the late effects of polio, besides swallowing, that could be potentially life-threatening. And, in my travels, I continue to hear stories from polio survivors who have breathing difficulties.

#3 – I know many polio survivors who now use night-time ventilation and feel so much better, but their pathway to this relief was through the emergency room. I believe our Network is obligated to provide knowledge to prevent this from happening to others.

#4 – This issue is a good way to educate polio survivors who, in turn, can educate their doctors. I have heard the comment, “I am not having breathing problems. The physician checked my lungs and they are fine.” Or, “The physician checked my breathing and said it isn’t bad enough yet and he didn’t think I would want to use a ventilator this young.”

#5 – The decision about the type of ventilation to use and when it will begin should be made in collaboration with your doctor and your family. The purpose of this Polio Network News is to ensure that the decision is an informed one.

My appreciation to Tony Oppenheimer, MD (eaopp@ucla.edu), and to ventilator user Linda L. Bieniek for their insightful reviews.

We all struggled with what to include and how to explain a complex topic briefly and simply – one that really may apply to you.

– Joan L. Headley, MS,

Executive Director, GINI

My Journey to a Good Night’s Sleep Marian Gray, Oakland, California

When I was 5 years old, I contracted polio. The family doctor, summoned to my home, carried me out the front door. I have not retained much of the following weeks and months except that my parents were kept away from me, and, at some point, I felt that I was suffocating. I was placed in an iron lung, but do not remember how long. Rather than being sent to a rehabilitation facility, I returned home and had visits from a physical therapist. I had leg braces, a strange arm brace that held my right arm straight out from my shoulder and bent at the elbow, and a little wheelchair.

I did not attend school until third grade, and by that time I had tossed the braces and wheelchair. Breathing did not seem to be an issue then. At age 8, I had a spinal fusion and was out of school for fourth grade. Back in school for fifth grade, I used a wheelchair for

trips to the playground where the other children used me as a battering ram.

Around this time, I remember having difficulty coughing up secretions when I had respiratory infections. I remember being embarrassed in class while trying to cough, terrified that I would choke to death. Years later, I figured out that shoving myself on my abdomen could help while trying to cough. I still use that same method.

In the early ‘80s, I attended a GINI conference in Saint Louis. There was a lot of talk about breathing problems and respiratory infections. I remember Augusta Alba, MD, mentioning the possibility of “drowning in your secretions” and the necessity of dealing with this aspect of the late effects of polio. One of the vendors had a chest shell breathing device that I tried. Someone nearby said, “You should have seen the look on your face when you tried that thing.” So that is what it felt like to breathe!

Back home in California, I tried to track down information about breathing devices and how to deal with respiratory infections – without much luck. One pulmonary doctor told me that, because I had not died during the initial attack of polio and no longer used the iron lung, I could not have breathing problems related to polio. I did not believe him, but did not feel in serious trouble except when I caught a cold.

Then came nightmares of drowning or suffocating, waking up choking, morning headaches, and, worst of all, getting up and down many times during the night to use the bathroom. I eventually went to another pulmonologist who sent me home with a pulse oximeter. I was also referred for a pulmonary function test that was only done in a sitting position, not repeated while lying on my back (supine). Based on the results of these tests, I was provided with a bilevel positive airway pressure device and a mask. I tried it for a few nights, but it was awful.

About five years ago, a respiratory therapist friend encouraged and helped me to get an appointment with a doctor at Kaiser’s regional rehabilitation facility in Vallejo, California. I had pulmonary function tests and was referred to the overnight sleep lab. After two hours, the lab technician came into my room and said, “You’re not breathing enough.” She gave me nasal pillows to use with a bilevel device. For a few minutes I thought I would surely suffocate and die, but the technician was very comforting and managed to calm me down. Eventually, I fell asleep.

My new doctor prescribed a Bi-PAP®. Since my insurance policy does not cover durable medical equipment, I paid for these items myself. I was sold nasal pillows, headgear, and tubing to attach to the machine that I rented for a month. There was no mention of other brands or models that might exist. When I began using the new equipment, I hated it. The machine was noisy, I heard the air coming in with every breath, and I felt the air as it shot each breath at me. The nasal pillows leaked and my nostrils were sore in the morning.

I tried to educate myself about the whole situation and found a polio chat room where breathing issues were rarely discussed, except once when someone mentioned a breathing machine that was quieter than others. So, there were choices out there. I would not have to settle for the first machine I tried.

Over the next couple of months, I rented about five different machines and tried a variety of masks (interfaces). My husband, Roger, assembled files of information and phoned vendors and manufacturers to learn what was available and what each might cost. Roger and I get similarly possessed when we are in the market for a new washing machine or a new variety of tomato for the garden. But in a serious medical situation, should it have to be do-it-yourself? There is no equivalent to Consumer Reports to provide a thorough, unbiased comparison of ventilatory equipment.

When it came time to quit testing machines and buy one, I settled on the Quantum® Pressure Support (no longer being manufactured). It was the biggest, heaviest, most expensive one I had tried. But the adjustable rise time sold me. Each inspiratory breath is delivered gradually. This is essential for my comfort. I also liked the controls on the Quantum. They are located on the front and are easily adjustable when necessary. There are no secret adjustment codes available only to “professionals.” The Quantum can also be set with a backup rate for timed breaths, a feature I use. With some of the machines I rented, my spontaneous inhalations were apparently not always strong enough to trigger the machines to give me a breath.

Next, I wanted a smaller, lighter-weight unit for backup and for travelling, and found the Sullivan VPAP® II ST which has adjustable rise times and can be set to my specifications. I now use the VPAP exclusively and keep the hulking Quantum as backup.

At journey’s end, I now go to sleep within a few minutes of going to bed. I have no more

morning headaches. I have not drowned nor suffocated in a nightmare. Best of all, I no longer need to get up to go to the bathroom during the night. (According to Colin Sullivan, BSc Med, MB, BS, PhD, FRACP, FAA, from Australia, who helped develop the VPAP, there is a biochemical chain reaction that may result in nocturnal urination when people are underventilating during sleep.)

While waiting to discover the ideal mask, I use a ResMed Mirage® and Ultra Mirage®, liking different features of each. I also use a heated, homemade humidifier and so far have resisted speeding hundreds of dollars on a “real” one. Use of a humidifier was not mentioned when I bought either of my machines, and I found that dry air being blown into the nose and throat could be uncomfortable.

I located mail-order companies selling equipment and supplies on the Internet. The prices are often better than buying through a local respiratory equipment dealer. For repeat orders of supplies that I know will work, this can be a saving.

My Search for the Solution Jean B. Davis, Albany, Georgia

After five days as an inpatient at Vanderbilt Stallworth Rehabilitation Hospital in Nashville, Tennessee, under the care of Brenda Jo Butka, MD, and her staff of respiratory therapists, I am able for the first time in months to breathe adequately at night, to sleep, and to function at optimum capacity during the day.

I contracted polio in 1953. It left me quadriplegic and dependent on the iron lung for five months. I left Vanderbilt University Hospital two months after being weaned from the iron lung and was able to breathe without any respiratory assistance. My almost total quadriplegia continued, however, and that condition worsened over the years as I experienced the late effects of polio.

The late effects of polio also caused my breathing capacity to deteriorate over the years, and about 12 years after I left Vanderbilt, I began to need help with my breathing during the night. I started using negative pressure ventilation with a cuirass and the Monaghan 170C ventilator. Then, with the passage of 15 more years, I began to require assistance during the daytime, using an early PVV ventilator with mouthpiece and then a PLV®-100 volume ventilator with mouthpiece during my waking hours. I continued to rely upon the Monaghan and cuirass during the night.

About two years ago, I began to have problems sleeping. I did not seem to be getting enough breath to allow me to relax and go to sleep. My equipment provider substituted a NEV®-100 for the Monaghan to drive my cuirass, and my breathing problems at night noticeably worsened. Because the exacerbation of my breathing problems coincided with the use of the NEV®-100, I erroneously attributed them to the equipment.

I was unable to find anyone in this area – southwest Georgia – who could offer any solution to my breathing problems, (although a therapist suggested that I might need to use the iron lung again), until one day in 1998 when I was discussing the problem with the manager (a registered respiratory therapist) of my equipment provider in Atlanta. She gave me the name of Brenda Jo Butka, MD, Medical Director of Pulmonary Services at Vanderbilt Stallworth Rehabilitation Hospital since 1995. I contacted Dr. Butka and was in the process of arranging an appointment when my van was rear-ended by a truck, and I sustained a broken left hip. That interrupted my plan to travel to Nashville to see her.

My breathing problems at night continued to worsen, however, and I began trying to supplement the NEV®-100 and cuirass with the use of my old PVV positive pressure ventilator and mouthpiece. This did not work, and early in 2000, I again contacted Dr. Butka and arranged to enter Vanderbilt for evaluation and treatment.

Although I dreaded the trip – nine hours by automobile from my home – it was apparent from the first that Dr. Butka and her staff were eminently experienced and competent in the kind of breathing problems I was having. That in itself was encouraging and reassuring.

When I went to Nashville, I was apprehensive that the solution to my problem would be to return to the iron lung. This would have meant a substantial diminishment in my quality of life, and I dreaded the prospect. Dr. Butka put those fears to rest immediately. She made it clear that the solution to my problem was yet to be determined, but the solution was not the use of the iron lung or negative pressure ventilation in any form.

During the ensuing five days of my stay at Stallworth, Dr. Butka confirmed that using negative pressure ventilation equipment during the night was inadequate for me. My oxygen saturation levels were substantially below normal, which accounted for my feelings of breathlessness, inability to sleep, and the

general feeling of malaise during the day.

It was decided that the use of a positive pressure volume ventilator (I use the PLV®-100) with nasal mask at night was the appropriate solution. I had been told about this option at home, but I was not convinced that this was the proper solution to my problems. There appeared to be no one at home who could guide me in the use of these options, and I had not really given the masks a fair trial. They felt uncomfortable and intolerable, and I did not know how to use them correctly.

At Stallworth, I was shown a variety of masks, how to properly use them, and how to deal with the problems of skin irritation and discomfort. I also became convinced that use of the mask would solve my breathing difficulties.

The first night with the nasal mask I slept six hours and my oxygen saturation levels went up to 98% and 99%. The next night I slept eight hours, and thereafter I had eight and nine hours of uninterrupted sleep. My oxygen saturation levels continued in the range of 98% and 99%. Since I have returned home, I am sleeping as I have not slept for months and my oxygen levels remain at the 98% level.

I now use Mallinckrodt’s Breeze™ SleepGear™ (which contains ADAM nasal pillows with tubing going up over the nose and forehead, held in place at the back of the head) and find it the most comfortable for me.

Brenda Jo Butka, MD (615-963-4032)

Gazette International Networking Institute (GINI)

4207 Lindell Boulevard, #110

Saint Louis, MO (Missouri) 63108-2915 USA VOICE: 314-534-0475 FAX: 314-534-5070 Relay MO: 800-735-2966 (TDD), 2466(V)

gini_intl@msn.com www.post-polio.org

[Editors comment. We fully appreciate this is all American information. However we hope that this will help you discuss your problems with your specilaists. We welcome some more British stories of how you are coping on any subject but particularly this one.

At present we cannot advise on UK makes of equipment, you will need to discuss this with your specialists.]

Letters to the Editor,

Merseyside – I was diagnosed with PPS nearly five years ago, but on looking back realised that I had been deteriorating for a lot longer than that. I was lucky enough to be included in one of the four rehabilitation research groups at St Thomas’ Hospital in 1999/2000. I was part of a group of ten, and apart from an aunt who contracted polio at the same time as myself, this was the first time I had met other people who had suffered with polio. Imagine my amazement therefore when earlier this year I found another PPS sufferer who lived down the same road as myself! Since then I have been put in touch with two other people within a 15 mile radius and we have decided that it would be helpful for us to form our own support group. We shall meet up a few times a year and pool ideas, resources, moans and generally have a good time! I was wondering whether there were any other PPS readers of LincPin in the Merseyside area who might like to join us.

If so please contact me : Di Brennand on 0151 924 4680 or email: d.brennand@liv.ac.uk

Cornwall – There is a new informal pps support group based at the Rehabilitation Unit in Hayle. If you would like information please contact Chris Salter linpolioweb@loncps.demon.co.uk or Mary Frost,

Physiotherapy Department. Marie Therése House

St. Michael’s Hospital, Hayle, Cornwall.

(01736) 758875

Hampshire – Dear Friends, I was delighted to read that you intend to publish a long article on respiratory problems as I have many questions?

Hoarseness – the more tired I am the worse it is, talking becomes a real problem.

Dry Coughs/Choking – Perfumes, sprays etc, set it off and I cannot be anywhere near them now.

Warm Building/Crowds – I cannot sit in any enclosed area if there is no or little ventilation.

Gulps of Air – often my chest grasps for enormous bouts of air and it really shakes my ribs and chest. There is no pain attached, but it happens suddenly and is over quickly. Its not yawning but the process is similar.

Fast Breathing – I often wake in the night gasping for air and it takes a while to get my breathing back to MY normal. Windows are open and I am not hot.

Chest pains – I regularly have pain under my left chest, down my side and around to the lest side of my spine. I do have scoliosis.

I have been a Lane Fox Patient for four years and go again at the end of August. If you have similar

problems it would be nice to share them and help me not feel so alone. If you do not have email then write to me via the office address.

Clare Colfer – Hampshire – <clare.colfer@cwctv.net>

EATING WELL EASILY PART 1 by member Virginia Holland

Much as we enjoy eating, don’t you sometimes wish we didn’t have to eat? I find it can take up so much time and energy, going shopping, thinking about what to have for lunch/dinner etc., and then actually preparing the food. It’s eaten in a flash and then there’s all the clearing up to do.

For the last three months we’ve been using the Sainsbury’s to You delivery service and can thoroughly recommend it. I order over the phone rather than the Internet, although you can do either. As we already shopped at Sainsbury’s we were sent a list of everything we’d purchased over the previous few months, with all the necessary reference numbers (very clever, this modern technology). If anything I’ve ordered is unavailable at the time the shopper goes round picking out my order, a sensible substitute is included. Substitutes are pointed out at the time of delivery and don’t have to be accepted. There is a £5 delivery charge, but as we are three in family I find this well worthwhile in the time and energy it saves both my husband and me. Even for someone living alone with a limited budget, it might still be a useful service, perhaps once a month, to deliver the heavy non-perishable items, along with the perishable items for that week.

But to get back to the challenge of providing three meals a day, plus a couple of snacks…….. Even if we enjoy cooking, there are times when we all need easy meals, times as well when we suddenly realise we’re hungry and need to eat but don’t have much energy to prepare anything. I can’t promise any fantastic recipes here, because as a family we eat very simply, but just a few ideas for quick, easy snacks and meals, with reasonably healthy eating in mind.

We’ve discussed before that it’s important to have balanced meals with some protein, carbohydrate and a little fat at each meal. During hot weather, it’s quite common not to feel all that hungry sometimes, yet it can be a mistake to go too long without a proper meal, just relying on snacks that

are not balanced. It’s especially important not to miss breakfast, making this a substantial meal, if you can. (You may have heard of the expression “Eat breakfast like a king, lunch like a prince and supper like a pauper”.) Bacon, eggs and sausage are not the only protein food to have at breakfast. Baked beans and/or mushrooms on toast, kippers or kedgeree would make a great start to the day. Muesli, with nuts or seeds such as sunflower or pumpkin make a change, along with milk or yoghurt. Also you might try wheatgerm or soya milk to give variety. Some shy away from nuts, thinking them too fattening, but a few unsalted nuts along with some fruit make a great snack to keep you going, and the fat they contain is good fat that you need.

Apart from some protein, it would be good to include some fruit, vegetables or salad at each meal. These foods are largely carbohydrate (starches and sugars) so, used along with the protein they form a light, balanced meal, without the need of too much bread or potatoes, especially if you find it

hard to keep your weight down. Most protein foods contain some fat so there isn’t any need for a lot of extra fat – a little butter, olive oil in a dressing and nuts and seeds would supply all your needs. Fruit, vegetables and salad contain valuable vitamins and minerals and it would be good to include something from this group at each meal, i.e. fruit with breakfast, salad at lunch and vegetables in the evening. That way you easily get your recommended five portions a day.

If you need to rely on frozen or tinned fruit and vegetables, don’t worry too much, although it would be a good idea to look for tinned fruit in fruit juice rather than syrup, and vegetables tinned without added salt, if possible. Frozen vegetables would be preferable to tinned, as we’re told that frozen vegetables have been frozen so quickly after harvesting that they often contain more nutrients than supposedly fresh produce. I personally prefer to use fresh fruit and vegetables where I can, but am often guilty of buying far too much food at any one time, and then finding myself using up weekold broccoli, etc. that is definitely past its best. If you find it convenient to prepare vegetables ahead of time, it would be a good idea to put them in a plastic bag in the fridge till needed rather than leave them standing in water, as a lot of the nutrients will leach out.

On warm days what I find very useful are cold dishes that can be stored in the fridge for a few days that I can dip into, just adding a salad to make a light satisfying meal. As a family, we don’t eat a lot of meat but do like fish of all kinds, especially the oily ones like salmon and mackerel. I find it so quick and easy to cook, usually just baking it in the oven and, along with two or three veggies cooked in the one saucepan, it makes a good meal. If I cook more than we need, cold fish is quite useful in various dishes. I also make good use of tinned fish – again, all kinds of fish – sardines, tuna, mackerel, salmon. Tuna is quite nice flaked

and mixed with a tin of red kidney beans and sweetcorn. Add some dressing or mayonnaise for flavour and moisture. It is quite filling and goes well with salad of any kind. Once made up in the fridge, it will keep for a couple of days and can be dipped into for a quick snack.

Rice salads are very useful too. I particularly like to use brown basmatti rice. Once cool, I add anything, really. Bits of chicken, flaked fish, prawns, raw red onion, spring onions, cashew nuts, celery, radish, peppers, courgette – absolutely anything I have to hand. Broccoli is very good, just cut up into small florets and cooked very briefly so that it is still firm. Anything like this can be added to any salad. Once again, a dressing of olive oil and lemon juice or cider vinegar and maybe garlic, herbs or mustard will add flavour. Another idea along these lines is to transfer a tub of plain cottage cheese to a larger container and add any of the above ingredients. Once again, this should keep well in the fridge for a couple of days. Use your imagination and you might discover your own favourite recipe that you can share with us!

When you read about the need for having a small amount of protein at each meal, you might automatically think only of meat, fish, eggs and cheese, but there are a lot of dishes we can prepare using vegetable protein. I make quite a few meals with beans and lentils. Lentils cook quickly and don’t need to be soaked beforehand. I so often forget to presoak beans though, that I do keep some tins in, especially black eye beans, borlotti beans, flageolet and cannellini, also chick peas – all available in the supermarket. They are all slightly different in flavour and, mixed together with a dressing and anything else you like to add, they look attractive and are filling and nourishing. A chick pea dip called houmous is a great standby to have in the fridge. A couple of rye crackers and sticks of carrot and celery to dip into the houmous makes a light lunch or snack any time.

A lot of people like the idea of eating more vegetarian food but they can only think of eggs and cheese and are unsure about using vegetable protein. The thing to remember about vegetable protein like beans and lentils is that to make a complete protein, you need to add something like bread or rice, in other words, a grain of some kind. This isn’t hard to remember if you think of our old standby “beans on toast”. Combining the beans with the toast gives you a complete protein. Similarly, rice and beans, a staple of much of the world, also combines to make a complete protein. There are other combinations that it is helpful to know about, but I’d like to explore that further next time when we’ll be thinking more about warming food as the days draw in.

If you’re conscious of improving your diet, it’s important to take things slowly and take time to develop new tastes. It can be very stressful if you get too anxious about following suggestions too strictly. The main point to keep in mind is to have plenty of variety and allow time to enjoy your meals – after all, food is one of life’s pleasures that most of us can participate in!

Vivien Holland –

32 Green Lane, St. Albans AL3 6EZ.

<vivienholland@hotmail.com>

ONLY A FEW LEFT OF THE NEW BOOK

POST-POLIO SYNDROME

A Guide for Polio Survivors and Their Families by Julie K. Silver, M.D.

The retail cost of the book is £19.95. plus £2.00 p&p.

We have obtained a discount and cost to members is £13.95 plus £2.00 p&p. Please will you send request and remittance to the Secretary, 12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR. Please allow 14 days for delivery.

ELDERLY

While working for an organization that delivers lunches to elderly shut-ins, I used to take my four-year-old daughter on my afternoon rounds. She was unfailingly intrigued by the various appliances of old age, particularly the canes, walkers and wheelchairs. One day I found her staring at a pair of false teeth soaking in a glass. As I braced myself for the inevitable barrage of questions, she merely turned and whispered,

“The tooth fairy will never believe this!”

A Medical Alphabet

A’s for arthritis B’s for bad back C’s for the chest pains. Corned beef? Cardiac? D is for dental decay and decline E is for eyesight–can’t read that top line F is for fissures and fluid retention G is for gas (which I’d rather not mention) and other gastrointestinal glitches H is high blood pressure I is for itches J is for joints that are failing to flex L for libido–what happened to sex? Wait! I forgot about K for bad knees (I’ve got a few gaps in my M-memory) N’s for nerve (pinched) and neck (stiff) and neurosis O is for osteoP’s for porosis Q is for queasiness. Fatal? Just flu?

R is for reflux–one meal becomes two S is for sleepless nights counting my fears T is for tinnitus–bells in my ears U is for difficulties urinary V is for vertigo W is worry About what the X–as in X ray–will find But though the word “terminal” rushes to mind, I’m proud, as each Y – year – goes by, to reveal A reservoir of undiminished Z – zeal— For checking the symptoms my body’s deployed, And keeping my twenty-six doctors employed.

from Marsha in Texas, marsha@ccms.net

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome. Membership and Requests for Information Packs, Leaflets, copies of articles to

Hon. Sec. Wendy Grimmitt <CWGrimmitt@aol.com>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

European Membership – LM £125 – Member £12.50 a year – Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail.

(US$ checks to Lincs PPN. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA) Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840 Next LincPIN Newsletter – August 2001 Articles for publication by September 20th – Publication date 5.10.2001

Founder & Chair – Hilary Hallam <linpolio@legend.co.uk> Vice Chair – Janice Eary <janiceeary@hotmail.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Honorary Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com> Committee Members – Phil Bilton, John Eary, Ted Hutchinson, Jennifer McGowan.

Survey Results from Janice Eary, Vice Chair.I would like to thank the 68 of you who returned completed questionnaires and to the very constructive comments many of you made.The results of this survey will help us to go forward in the direction that you as members want. The committee will take very careful note of all the comments and suggestions you have made and where possible act on them.If you have any other ideas or would like to make any comments on the results of this survey or on anything else for that matter please write or email.Thank you all again for taking the time to complete this questionairre. Further comments from Hilary and Chris at the end of the results.Section 1. Information Pack.(8 of the respondents had not received an Information Pack, so they have not been included in the totals for this section)Q1. Did you find the Information Pack as a whole:- a) very helpful 61%, b) helpful 30%, c) not very helpful, 4%, d) of no use to me 2%.Q2. Is the amount of information given on Polio and its late effects:-a) too much 2%, b) too little 4%,c) enough for my needs 92%.Q3. Is the type of information given:- a) very helpful 52%, b) helpful 42%, c) not very helpful 3%,d) of no use to me 3%.Q4. Is the information easy to understand?Yes 71%, No 23% (6% said some parts were not very easy to understand)Q5. How useful have the personal profile chart been to you?a) very useful 16%, b) useful 40%,c) not very useful 26%,d) of no use to me 18%.Q6. Have you used the diary and activity planning sheets?Yes 30%, No 70%.Q7. If yes were they:-a) very useful, 30%, b) useful 66%,c) not very useful 0%,d) of no use to me 4%.Q8. If no can you say why?1. I seem to use my energy seeing to my daily needs, then don’t get down to the diary.

2. I know my illness is worsening, but at the moment with pacing I complete a fairly normal day (at a much slower rate of course) and I don’t feel the need to plan my time in such detail.3. I take my activities day to day and plan accordingly.4. Sorry I haven’t got round to it, new member.5. Too lazy to do it.6. I keep intending to use them but I am a bit lazy about putting things down on paper on a regular basis, I have to be in the mood.7. Already worked out activity/expenditure regime.8. I don’t/want/need to see a Doctor. Therefore had no need to gather evidence.9. Because I tend to go with the flow and see how I feel from day to day.10. My energy levels are very low, so I am used to planning very carefully my small number of activities.11. Probably not appropriate at present.Comments.1. Very informative useful packs.2. All I can say is ‘thank you’ and keep up the good work.3. A good idea which helps to formulate evidence.4. I am ashamed to say that although I received the pack I have never read it or put any of its suggestions into practice. Perhaps I wouldn’t be in my present state if I had!5. Great idea for new members.6. I found the leaflet on medications particularly interesting.7. Excellent.8. It may help if we had professionals in the UK to assess us. Even Lane Fox do not issue us with guidelines. Knowing my own body has helped me to assess my own needs and work around them.Section 2. Newsletter.Q1. Do you enjoy reading the newsletter. Yes 90%, No. 8%.Q2. Do you find the content as a whole:- a) very useful 50%, b) useful 36%,c) not very useful 8%, d) of no use to me 6%.Q3. Can you say which parts of the newsletter you find particularly helpful (you may tick more than one)a) editorial 52%, b) personal stories 58%,c) ‘hints and tips’ 62%,d) articles on polio and post polio 82%e) ‘entertainment features’ 25%.Q4. We realise that a number of medical articles are difficult for the lay reader to understand, however do you find these articles generally:-

a) very helpful 22%, b) helpful 58%,c) not very helpful 16%d) of no help to me 4%.Q5. Have you ever given your Doctor or other medical professional, a copy of article from the newsletter?Yes 52%, No. 48%.Q6. Does your partner or other close family member read the newsletter?Yes 44%, No. 48%Q7. If yes do they find the content:- a) very helpful 20%, b) helpful 60%, c) not very helpful 16%,d) of no help at all 4%.Q8. If no, or they find the content of no help can you say why?1. Just leave it to me and our Doctor as they have lived with my problems long enough.2. I tell them anything new.3. I have no family.4. I have a mentally handicapped wife.5. Son and Daughter in Law, very busy, and don’t have time. But would read a single article if relevant to me and I asked them to.6. No partners.7. Too busy to read it at the moment.8. I think my husband relies on me to tell him anything I think may interest him.Comments.1. I think it is a first class publication, very well written and of significant scientific value.2. Occasional articles on diet? High protein? Excluding dairy products etc. would be useful.3. Some art work ‘lighter articles’ on coping with post polio. Copy could be broken up a bit, some colour added. It can be a bit hard to read.4. Keep up your excellent work.5. Perhaps look at the overall design, there are large areas of solid text that could possible be broken up in different ways; sub heads/computer graphics6. Seems very good. Maybe a section for contacting similar suffers in my own area?7. On the whole I find it brilliant, far more helpful than the BPF one. My only quibble is that as Secular Humanist I find the quasi religious bits (usually American) slightly off-putting.8. It is varied, informative and interesting.9. I am grateful to the American medical profession for their research into PPS, but could we have less emphasis on America as a country. What conservation and not exercise is the way to avoid future problems.10. Less American info and more UK. Less negative

and more positive outlook info and encouragement after all most of us have lived longer than anticipated.11. To biased towards the USA.12. To many articles advising on diagnosis. As there is nobody in the UK that can help us, I find these articles maddening. Most articles are on helping/advising on use of our polio affected limbs, but none on respiratory/scoliosis difficulties. These two areas affect me more than weak polio limbs, yet I don’t see any articles on them.13. Perhaps publish contacts for anyone just needing someone to swap moans and groans with, and suggestions. Although I wouldn’t complain about the content at all. People have obviously worked very hard on the newsletter and praise is more than due.14. I think you do a wonderful job, I am more grateful than I can say.15. I think you do a wonderful job, it’s a lifeline.16. The newsletter has too much American information.Section 3 WebSite.Q1. Do you have daily access to the Internet? Yes 50%, No 50%.Q2. Have you ever used the WebSite? Yes 56%, No 44%.Q3. If yes, how often do you use it?a) more than once a week 11%b) weekly 15%,c) more than once a month 27%d) monthly 17%.Q4. Do you find the website:-a) very helpful 57%, b) helpful 35%,c) not very helpful 6%,d) of no help to me 2%Q5. Does anyone use the WebSite on your behalf? Yes 16%, No. 84%.Q6. Have you any comments or suggestions you would like to make about the website?1. No I am just sorry that more people dont have access.2. Voice Therapist found it very interesting and enlightening.3. I have downloaded some very useful information and articles.4. Good design. Keep up with web technology as budget permits.5. One of my main reasons for wanting to get ‘on-line’ at home is to connect to this site.6. The competence and skill of your organisation has 7. This is very important! I would not have found you otherwise.

about Australia and the rest of Europe. Chidden in the developing world are still contracting polio. Is there any awareness there that energy led you to become a world site – plan accordingly. This may be a role you do not want however.

8. An excellent WebSite. Well presented and accessible. One minor comment it was difficult to find special articles, e.g. on Bulbar Polio.9. To me it is very good.10. I find the website interesting and easy to use.11. First class website.12. I think there should be a part of the site for members only. There is no point in having a newsletter for members if everyone is able to read it on the web.13. Set up site to permit members to download and store/print complete newsletter, or mail a floppy of CD for overseas members. Thus keeping your overseas mail costs down, give overseas members the option.General Comments and Suggestions.1. Essential reading – the only source of correct information on PPS, which is clearly explained and scientifically validated in the UK, it should be distributed and published more widely. Hillary’s articles are excellent. I have learnt a lot from the newsletter and other articles sent to me.2. Keep up the good work and thanks.3. Do not think I wish to make the expenditure to be on the web as I do not have enough hours in the day now to do all I would like to. I think you provide a very good publication.4. No, but thank you for the group and thanks for asking.5. Personally, I think you all have done a quite magnificent job, alerting polio survivors and medical people to problems and the best way forward, especially regarding pain and time management. Congratulations to Hilary and all supporters.6. There are many of us living on our own, please remember this as many articles refer to partner/ family help.7. More about UK email groups please.8. Thank you for battling on our behalf and feeding us with all you obtain. Knowing things is better than feeling alone and out in the dark.9. Keep it up.10. No, other than please keep on doing what you do! I find the medical stuff really useful. I can get articles on knitting a three piece suite somewhere else!11. Keep up the good work. Congratulations to you all.12. Really good work everyone!13. Thank you for your excellent efforts.14. Lincs PP Network was my first contact with other ‘old polios’. I have since joined the BPF, and am now an outpatient at Lane Fox, who are keeping an eye on me, together with my GP. She is most grateful for copies of articles etc which I pass on to her and together we are learning about PPS and what to do about it.Combined reply from Hilary and Chris.To put it in simple terms, one of our goals is to hasten

the day when your GP will tell you about PPS not the other way around.Remember we have members or are in touch with many people using day and or night time ventilation, and have tracheotomies, in fact Dr. Henry Holland has had one for over 30 years. We would be more than happy to put you in touch with others so that you can discuss how beneficial these have been to their lives.The medical articles etc that we do have access to have come about through attendance at Post Polio Conferences, receiving other groups newsletters and taking part in the polio support forums on the Internet. In fact without the Internet we would not be typing this today and possibly still be searching for a diagnosis.Our biggest restriction to change is finance. Our biggest problem is energy levels to do all the work that we would like to do. Fund Raising is an urgent need but we have restricted time and energy to allot to this. Remember that all the work including the WebSite is done voluntarily and much of the expenses to do what we do do comes from our own or our families pockets. We are not looking for hundred thousands – five thousand would make a huge difference to improving our service to you and the medical profession. If you have any contacts or ideas to help us raise funds then do please get in touch. Every penny helps.The Information Pack is under constant review and at present undergoing a complete draft change of how the information is presented. We are discussing the splitting of this into sections with fees attached to some parts. People enquiring for information will then be given a choice of some free material and some at the cost of printing that material.The Newsletter. The LincPIN. This as mentioned in the Editorial is intended to provide Information on post polio issues. Together as a whole all 30 issues contain a wealth of information and articles on many polio and post polio related subjects. If anyone not on the Internet would like a copy of the contents of previous issues then please contact us.I agree that sometimes there is a lot of information from America, but most conferences, research, pps support groups are in America. We have printed articles from Canada, Australia, Ireland, Germany, UK etc., We can only put in information that we have access to. There is a language issue with European Newsletters which we do not have the funds to have translated and therefore we do not now request them. I have a wonderful copy of the Finish Polio Newsletter but the word Polio is the only one I can understand!Again I ask why not write to us with your stories, hints and tips, questions, ideas for future issues etc. Vivien Holland joined and has sent articles for each newsletter. Sylvia Dymond has written to us a few times. Old and new members we need your input. Only today I was asked would Christine write some more articles for us as she wrote some really great stories that were so vivid

you could almost see it happening. I agree, over to you Christine to please write more stories for us.We fully appreciate that we do not all want the same amount of information and it is very difficult to pick and choose good articles to answer the questions posed to us. Sometimes these – as this issue on breathing – will contain much that some just do not want to read. However, there are others who not only want to read this, but have symptoms that are not being addressed due to lack of knowledge by the health professionals seeing them. It is therefore important that we do provide articles of a more medical nature that will be read – and most importantly – the information taken on board.We are looking at providing a change in format and later when funding permits some colour.The WebSite. One of the intentions of the web site is to provide an information resource for medical professionals. Since our web site first appeared the use of the Internet by medical professionals has increased dramatically and continues to do so. We do receive emails and phone calls from health professionals in the UK and from abroad who have found us on the internet looking for more information.While we emphasise that we are not an Internet support group, rather a support group making we hope effective use of the Internet, it is difficult to imagine what progress and contacts we could have made without the communication facilities provided by the Internet.While our online library is probably one of the largest inthe world it only contains a small percentage of postpolio related medical articles published over the years. We are dependent on authors or publishers giving us permission to effectively republish articles.You can search the site or just the Library using words like bulbar using the Search engine available. (Please do not use the word polio or post polio, as the number of instances that is used is tremendous)We intend to expand the “Library Assistant” section of our web site in order to offer more guidance on how to locate and obtain copies of medical journal articles. However, it can be quite expensive. For example, a copy of one particular 1988 article from a US journal ordered via the British Library comes to £18, over £10 of that being the publishers copyright fee. Note that is just for one copy and doesn’t include any publication rights.If you have any queries about our Site and how to find information then email <linpolio@legend.co.uk> I will be more than happy to point you in the right direction. I was new to the Internet myself six years ago and still have much much more to learn.

Thankyou from Chris and myself for the supportive comments.

I / We …………………………………………………………. Membership No. …………………………………..

Address …………………………………………………………………………………………………..

Phone Number ……………………………………… Email Address ……………………………………………….

will be / are unable to attend the AGM Day of Events

I / We have booked / have not booked rooms at the IBIS Hotel

and will be arriving at …………………………. on …………………………………………………………………

If you are coming by Train then please let us know so that if possible we will meet you at Lincoln Station.

I enclose the sum of £ …………………………… for ……………………. lunches @ £3.50.

I would like to Nominate / Offer to Stand

………………………………………………………………………………………….

For the Post of

…………………………………………………………………………………

Workshops.

I would like to discuss the following subjects if possible.

………………………………………………………………………………………………………………………………

…………………………………………………………………………………………………………………………………..

Question in Editorial – If you have had to give up work early because of PPS please can you tell us in a few words

why, what job you had and how much a percentage drop in income that has meant for you.

……………………………………………………………………………………………………………………………………………………………

…………………………………………………………………………………………………………………………………………………………..

………………………………………………………………………………………………………………………………………………………….

Questions for AGM which will be answered then or in the following issue of the newsletter overleaf please.

Please return as soon as possible to

Hon. Sec. 12 Larch Ave, Allington Gdns, Allington, Grantham, NG32 2DR

For fast acting relief, try slowing down.

-Lilly Tomlin

comedian in rowan arnd martins laughin inQuestions for AGM.

Woman’s Quote of the Day:

“Men are like fine wine. They all start out like grapes, and it’s our job to stomp on them and keep them in the dark until they mature into something with which you’d like to have dinner with.”

Men’s Counter-Quote of the Day:

“Women are like fine wine. They all start out fresh, fruity and intoxicating to the mind and then turn full-bodied with age until

they go all sour and vinegary and give you a headache.” millie……..

Linc Pin Volume 3 Issue 6 Read More »

Linc Pin Volume 3 Issue 5

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 5 – June 2001

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

Annual General Meeting will be on Saturday 29th September 2001 in Lincoln.

CONTENTS Editorial page 2 Most UK Polio Survivors are still reporting unproductive assessments. The facts and why we believe this is happening. Our search for a diagnosis – Ambassador from another Planet pages 3 to 5

All I Want is to Breathe the Air That I Need by Margaret Duckworth, Brisbane, Australia.

pages 6 to 9

NEW BOOK POST-POLIO SYNDROME – A Guide for Polio Survivors and Their Families

by Julie K. Silver, M.D. Foreword by Lauro S. Halstead, M.D. Chapter 2 – Post-Polio Syndrome. Ordering details follow. pages 10 to 13

NUTRITIONAL ADVICE TO COMBAT OSTEOPOROSIS by member Vivien Holland pages 14 to 15

Hints, Tips and Bits from Polio Survivors. Sharing how you manage has helped me. Free Directory Enquiries from BT Ironing from a man’s point of view – Ironing in the shower without effort. In my dreams.

Rotator Cuff Surgery and PPS Six weeks Post Rotator Cuff Surgery Exercise Plan for Polio Survivors. pages 18 to 23 Meetings Info and Contact Details page 24

Editorial by Hilary Hallam

Our Annual General Meeting will be held on Saturday 29th September 2001 in Lincoln. Full details in next newsletter. The day will run along the lines of the last two years. The meeting will be at Ancaster Day Centre in Lincoln 10.45 for 11.15 start. After this there will be a salad buffet lunch with time to chat. There will be two talks in the afternoon and question time. Rooms have been pencilled in for us at the Ibis Hotel (on the A46 bypass behind the Pride of Lincoln) the room rate is £35 with continental breakfast at £3.95 per person if wanted. (Ibis do not give discounts). Phone number for direct booking mentioning Lincolnshire Post Polio Network is 01522 698333. The hotel now has snacks available each day, but we are still able to bring in our own food, or take-aways. The Pride of Lincoln with full eating facilities is next door. As previous years we will have a leisurely get together both on Friday and Saturday nights in the hotel bar. Lots of sharing of stories and experiences not only of polio but much much more and with lots of laughter. Families and friends are most welcome. We will provide information on Lincoln’s attractions on request if those with you would prefer to do the touristy bits.

Other Meetings attended recently. Reports in August. Janice attended the AGM of the Long-Term Medical Conditions Alliance in London. Hilary and Lynn Hobday the Regional Neurological Alliance and Hilary, Lynn and Ted the Lincolnshire Neurological Alliance meetings both in Lincoln. At local meetings representatives of local health and social services listened intently and are now offering places at other local relevant meetings. Although things are moving slowly, they are moving in a positive way. Dr. Elizabeth Dowsett, a Life Member, spoke at the MESH meeting on 2nd June about ME/CFS/PPS and rehabilitation. She asked Hilary to speak to her slides that she now uses as part of her presentation. Dr. Dowsett has now presented to the English and Scottish Parliaments and the Welsh Assembly to her article published in Aprils newsletter and will be speaking again at our AGM. Dr. Dowsett will be joining us at the Neurological Alliance event in London on June 20th, details back page. See information on the Motability Road Show June 15, 16 & 17th Crowthorne Berkshire – some members are attending and meeting more info back page.

This is my 29th bi-monthly newsletter and I have just realised that newer members who do not have access to the Internet, where you can search our WebSite for information on any subject, would possibly like to have details of the contents of previous newsletters etc. Some subjects we are being asked to include have already been covered in earlier newsletters. We will be discussing this at our next committee meeting and publishing information on all our services in the next newsletter.

Most of your committee have PPS and are limited in what we can do both energy wise and financially. All the work is done on a voluntary basis most often at our own expense. We need more input from our members, especially the UK members, more examples to back up what we are saying; good results with health professionals/equipment companies/etc are as important as bad ones. In fact as I have said in many editorials we need to hear from you; Questions, hints and tips, stories, ideas for future issues, in fact anything that you think other readers would enjoy reading. Please ensure that anything you send quite clearly separates anything that you want publishing from the rest of your letter, including name/town/county/email address/etc.

Polio Survivors questions come by letter and phone and by email from all over the world. Including those who have been given a diagnosis of PPS nearly everyone reports ‘they do not understand PPS, they talk to me/ assess me/test me and tell me that I do not appear to have much of a problem, yet my life and functioning ability has reduced 95% over the last few years. They say or look at me as if I am exaggerating my problems, which I am most certainly not. I dont want to be like this, and as I continue to deteriorate I am fearful of what the future holds especially as I do not feel that I am getting any constructive help. Where can I get the multi-disciplinary assessment that articles say is necessary?’ Unfortunately at this moment in time we do not think any UK health professional is able to provide multi disciplinary testing – some report lack of funding as the reason. I have therefore written the next article trying to bring together the facts with the reasons why we are still saying that assessments that are taking place are unproductive. For some it will be a repeat of information taken from a variety of previous articles for which I apologise. This article will be sent and handed to various health and government departments in an effort to campaign for a better service not only for Polio Survivors but for all who have chronic neurological conditions with similar problems. The Neurological Alliance estimate that there are three million people in the UK with neurological conditions. We are ‘Stronger Together’. Any information that you can add towards this goal would be appreciated.

Address for Secretary and Treasurer, Wendy and Frank Grimmitt is 12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR. This is for anything relating to Membership. Requests for Information Packs, Leaflets, copies of articles, books. <CWGrimmitt@aol.com>

Most UK Polio Survivors are still reporting unproductive assessments.

The facts and why we believe this is happening by Hilary Hallam

Post Polio Clinics of note in the world use holistic multi -disciplinary assessment and some have been doing this for over ten years. In the UK most polio survivors report that they not getting a holistic multi disciplinary assessment but being seen usually in an examination room with little room to do more than walk a few steps. Regardless of the length of assessment most tell us that the end of assessment report most often does not find reasons to explain their new symptoms, most especially loss of functional ability and new weakness. Many feel that what they say is happening or the level to which it is happening is not believed, because it is not seen or assessed. Most tell us that often the report back does little more than rehash the referral letter. So what is wrong and why, and what can be done to improve this.

Manual Muscle Testing (MMT) working through the body asking you to make each muscle work once – grip, pull, push against me – has been used as a standard test for decades that will pick up weakness. From extensively talking with other polio survivors, post polio specialists, personal experience and research of articles the main stumbling block appears to be the fact that MMT does not test pattern of movement. It tests each muscle doing a single repeat of an action.

If we say that:-

• instead of going upstairs normally we are now

going up one at a time and pulling ourselves up

with our arm

• that our walking has reduced from 25 kilometres

down to 25 yards

• that we can lift, but not sustain the lift or drain, top

of the stove cooking pans anymore

• that we are coming home from work and crashing

out and are unable to do anything at the weekend to

get enough energy to go back to work the next

week

• that we used to garden and decorate but we can’t

even mow half the lawn now, etc.,

and this has happened over the last few years then we are reporting new weakness in the way we move, in our patterns of movement and over a period of time.

It has been said many times to those who have visibly lived with their polio ‘we do not know how you manage to do that when you have so little muscle available’. The reason is that Polio Survivors used substitution and assistance of other muscles to recover. Many have continued to do this. Most of us who are finding new weakness are using it again, often without realising it. If one muscle does not work, or is weak, then we ask other muscles or the next muscles to help or take over; we develop different ways of doing actions asking muscles to do movements that they were not designed for. These factors appear not to be known/ understood/or taken into account by many health professionals.

Our muscles do have energy but it is limited and to varying degrees. We might be able to repeat some actions a few times, some ten times, some more but then we have to stop and rest. When the test ‘grip my hand as hard as you can’ is only done once and we do that to level 5 then we are graded at that. However, what we are reporting is a drastic change from being able to use our muscles repeatedly for hours and now we are talking minute/s or less than that, but rarely are we talking about only one repeat or short period of sustaining that muscle action as in a single action MMT.

Recovery took place because undamaged nerves grew extra roots, axonally sprouted nerves, and these took over some of the orphaned muscle fibres. Working muscles were gradually built up to a level and remained that way for a length of time – called our Stable Period of Functioning. One of the criteria for PPS is this stable period of functioning of 10 to 50 years. The next stage is that we start reporting a variety of new symptoms. [1] There are differing theories as to why this is, but one is that the axonally sprouted nerves have worn themselves out by being overworked and are not being replaced. This is happening earlier than that which occurs with age.[2,3]

Many of us report that we started to notice deterioration following something occurring in our lives. From a fall, an accident, an operation, an anaesthetic, are asked to work in a different way compared to our previous work practice, being told to exercise more and you will get better, a period of increased stress, another virus or illness. We report that the same thing months or years earlier did not have this effect. This time we cannot get back to our previous level of function and we want to know why and what is happening to us?

We know from medical research that only 5% of people who take in one of the three polio viruses get ill from mild flu to death, and that 1% get paralysed. That 90% of the body is affected by the virus.[4] We know

• that 60% plus nerve damage produced paralysis,

• 45% to 59% damage and the doctors saw

weakness,

• less than 45% damage and weakness was not seen.

[5,6]

If the doctors found evidence of one of the three polio viruses in tests and we had some paralysis then our diagnosis was paralytic polio; only weakness and it was

non paralytic polio; for those where no weakness was seen, abortive polio. Not different conditions but different levels of the same condition and occurring in different areas of our body.[7] Statements like “I only had polio in my legs” needs to be rephrased to “I had polio and had paralysis and/or weakness in my legs”.

We read that in 1961[8] and repeated in 1995[9] that people who had polio have muscles that are functioning at a much lower level. A grade of 5 – normal – is not functioning at 100% but between 53 and 59%. A muscle graded as 4 – good – is functioning not at 80% but at 40% and so on down.

In very basic terms, normally when we ask muscles to work part of the muscle works and the rest is resting ready to take over, say a third and two thirds. We thought our good muscles were 100% we now find they were about 60%, say half working and half resting, and that is what we have lived with allowing many of us to achieve highly even in competitive sports.

As polio survivors experience new weakness, as our muscles are losing their ability, we do not have as much resting muscle to take over. This 53 to 59% functional ability in muscles graded 5 normal is starting to decrease. Take a grade 4 muscle with only 40% functional ability and there is only about 10% resting. [10]

The more we push these weakening muscles, the more we continue to repeat or sustain actions, the more fatigued we get.[11] If we pace and rest and use aids and assistive devices so that we do not waste energy and we use what we have wisely by planning ahead with work and rest periods then we manage better. We can and do slow down our deterioration.[12,13] We are conserving and preserving what we have left so that we can do as much as possible for as long as possible within the new limitations being placed on us. We are getting older and many of us are now having similar problems to those 30 years older than us. Are we worried about what the future holds? Of course we are, and we need help to cope with this and the earlier the better. Leaving the provision of aids till we can’t manage without them is shortening the time we will be able to do that function.

Polio Survivors are known to be strong minded, determined, sometimes pig headed because we don’t need any help Thankyou. This way of living took us way beyond what was expected of us at the time of our polio and has held us in good stead for our stable years. The majority of us thought that our polio was past tense and our recovery level would remain stable and we would be able to continue at that level well into our retirement. The fact that this is not now the case is a considerable shock. We still have polio, it never went away. We do not want to be like we are, we are certainly not exaggerating what we are reporting, for most of us the doctors is the last place we want to be.

If we report weakness in walking from 10 miles down to 25 yards, is a few steps across an examination room a realistic test? If we say that we are now struggling to get up a flight of stairs will this show in the three steps of a physio gym? Is just taking our history and listening to our reported symptoms enough to ensure that we do not have other conditions as well as or instead of PPS? There are no tests for PPS, its is a diagnosis by exclusion of other conditions.

What we need is productive comprehensive multi disciplinary assessment as soon as we report problems that visually assesses our difficulties. Many are told that there is no funding to provide this, but it would be more cost effective to do this than send us continually year after year on the rounds of hospital departments that take us nowhere. We also need to see information coming down from the top of Colleges of Medicine and Government departments, informing all that polio survivors can have new problems in later life. At the moment its mostly patient to health professional and whereas we are pleased to help we are exhausted by seeming to be ‘Ambassadors from another planet’

We want to be supported and advised health professional to patient as to how we can manage the rest of our lives and cope with this new and unexpected return of Polio back from had to has and is going to carry on having.

A few neurological conditions get this support, most do not. We know from the meetings of the Lincolnshire, Regional and National Neurological and Long-Term Medical Conditions Alliances that this is not unique to Polio, that most other neurological conditions have a huge overlap – 80% – of symptoms and problems. Coping, caring, housing problems, benefits problems, and others are the same no matter what condition you have. Add all chronic neurological conditions together and we are a huge – 3 million – and forgotten proportion of the population. Lets have a full time neurological clinic in most major hospitals and share the facilities, refer patients to specific specialists/clinics but case manage them locally.

There is no point in continuing to throw NHS money down the drain with ineffective unproductive appointments. The internet is helping patients research, become more knowledgeable about their condition and manage it better. Expert Patients are important, but we are only a cog in the wheel of getting appropriate medical help. Lets get round the table, share our experience and knowledge from our respective sides and move forward to a higher standard of service for all chronic neurological conditions.

1. Halstead & Silver 2000. Nonparalytic Polio and Postpolio Syndrome. Am J Phys Med & Rehab.

Special Feature on PPS. Jan/Feb 2000

2. Holman, K. (1986). Post-polio syndrome: The battle with an old foe resumes. Postgraduate Medicine, 79 (8), 44-53.

3. Tomlinson, B., & Irving, D. (1985). Changes in spinal cord motor neurons of possible relevance to the late effects of poliomyelitis. In L. Halstead & D. Wiechers (Eds.), Late effects of poliomyelitis (pp. 57-70). Miami: Symposia Foundation.

4. Bodian D. 1947. Poliomyelitis: Neuropathologic observations in relation to motor symptoms. Journal of the American Medical Association, 1947, 134:1148 -1154).

5. Bodian D. Histopathological basis of clinical findings in poliomyelitis. American Journal of Medicine, 1949; 6: 563-578.

6. Sharrard, W.J.W. 1955. The Distribution of the Permanent Paralysis in the Lower Limb in Poliomyelitis. J. Bone and Joint Surg. 37B:540-558. [Lincolnshire Library Full Text]

7. Falconer M & Bollenbach E. Jan 1999. Non Paralytic Polio and PPS. [Lincolnshire Post-Polio Library Article]

8. Beasley, W. C.: Quantitative muscle testing: principles and applications to research and clinical services. Arch.Phys. Med. and Rehab., 42: 398-425, 1961.

9. Perry J, Fontaine J, Mulroy S. 1995. Findings in PostPoliomyelitis Syndrome – Weakness of Muscles of the Calf as a Source of Late Pain and Fatigue of Muscles of the Thigh after Poliomyelitis* – Journal of Bone and Joint Surgery Vol. 77-A, No. 8, August 1995, 1148-1153 [Lincolnshire Library Full Text]

10. Bollenbach E, 2000. Polio Biology X – In PPS Manual Muscle Testing Problems Arise from Judgement & Biology. Polio Biology XI – The Biology of Fatigue. [Lincolnshire Post-Polio Library Articles]

11. Klein M, et al. Changes in Strength over time among Polio Survivors – Arch Phys Med Rehabil 2000;81:1059-64

12. Halstead, L.S, “Managing Post-Polio – A Guide…” p53

13. Silver, Julie K, Post Polio – A guide for polio survivors and their families, June 2001. (See pages 10 – 13)

Our search for a diagnosis.

“As promised a brief account of our search for a diagnosis. I started the consultant trail approximately 5 years ago because of a pain in the hip when walking or carrying heavy loads (I can now look back and recognise many other symptoms I had just got used to). The first doctor I saw was a consultant in rheumatology, he misdiagnosed me as having Polymyositis, started me on steroids, which gave me diabetes, made my thyroid condition worse and later on Inflammatory Bowel Disease. At this point it was decided we had no need to see each other any more.

I was then referred by my GP to a Consultant Neurologist who after 3 years of Biopsies, MRI, EMG and strength tests etc; referred me to The National Hospital for Neurology and Neurosurgery in Queens Square London. After all the usual tests they decided to admit me into the 5 day ward for a complete set of new tests. After all the tests and another MRI and EMG they finally gave me a diagnosis on January 4 2001. I was given the diagnosis by the consultant as follows “well Mr X……. you have Post Polio Syndrome, I know nothing about this condition you had best get on the Internet”. This I did, thank God for The Lincolnshire Post Polio Network. It really helped to talk to someone who understands. Thanks for the information.”

Name and address supplied.

‘Ambassador from another Planet’

I think the cluelessness of many health care providers may be a problem that is more universal than just the encounters we with post-polio have. It seems a universal complaint among people with disabilities like chronic fatigue, muscle myopathies, etc that the health care professionals try to push them to the limits that *they* (the HCP’s) think they should be able to achieve without taking the invisible into account. Most of the pt’s [physical therapists] I’ve encountered have never seen a case of polio. It has only been my luck to have had two doctors who had either grown up around it or actually treated it (in Bolivia). I don’t know the answer. One does get very tired of being the “ambassador from another planet” as I call it, continually having to educate people in their field so they don’t harm me. But education is the missing piece. I’ve started handing any new doctor I encounter a carefully selected authoritative collection of articles to get off to the right “foot”. Does it help? I don’t know but doctors and health care types thrive on the article stuff. It can’t hurt. Mare Otoole, Boston USA <zazencoyot@YAHOO.COM>

All I Want is to Breathe the Air That I Need.

I have provided this story in the hope that it will assist others who have unusual respiratory problems. My research and need for diagnosis has spanned some 25 years and it is only with the help of my family, some close friends, a good GP and a wonderful Physiotherapist (Specialised in Respiratory Issues) that I have been able to withstand the emotional trauma of this 25-year period. My heartfelt thanks also to Hilary who has been the recipient of many questions over the years and has often referred me (amongst other places and people) to the Lincolnshire website for the information we have so gratefully downloaded.

Margaret Duckworth Brisbane, Australia. [maduck@bigpond.com]

My apologies to the author of one of my most favourite songs which is the “The Air That I Breathe” sung by The Hollies and very popular in the 1970’s. Of course that does somewhat date me I know.

Apart from being a catchy melody this song with its chorus including the line “All that I need is the air that I breathe and to love you” encapsulates my feelings about my addiction to air. The love I have is for my husband and my three sons who have stood shoulder to shoulder with me during this battle I have fought to find answers about my respiratory problems and to be able to breathe easily.

As the years have passed since the initial Polio diagnosis (1954) and the later recognition of the impact of the late effects of Polio (1983) I have been searching for answers for my frustrating breathlessness. This breathlessness has always been with me but, spicing up my life considerably, have been intermittent episodes of acute breathlessness and respiratory distress.

Ask many of my doctors and they would say “Oh no, Margaret, not respiratory distress but an anxiety/ panic attack”. How silly of me to think that I have respiratory distress when I can’t breathe. It is so infuriating to be told that you are having an anxiety attack when you are fighting for composure as breathlessness escalates. Do the Doctors not understand that if one allows oneself to panic at that stage the breathlessness just keeps on getting worse?

I would not like to bore my readers with a long and detailed description of my search for answers so I have prepared a brief synopsis of the many avenues I have tried to get assistance.

I must add that I fully recognise the difficulties I have experienced have been exacerbated by the fact that we, as a family, have had a number of moves within Australia which has meant that I have had to start all over again with new GP’s and Specialist Medical personnel each time we have moved. (This sort of reminds me of another song…“pick myself up, dust myself off and start all over again”).

In 1954 I was hospitalized with Poliomyelitis and while in hospital I developed Polio encephalitis. On one night some 5-6 days after being hospitalised I was deemed to be 12 hours off being placed in an Iron Lung and my parents were told that I might not live through that night as I was an extremely sick child. I was just nine years old.

Being the stubborn and determined individual that I am, I did survive, albeit somewhat disabled, having lost the use of both arms, neck muscles, some left leg muscles and respiratory muscles, which were also damaged. The degree of damage was not made available to my family after my discharge as some nurse “lost” my muscle chart when my aunt, a Physiotherapist, rang to find out the extent of the damage. All I know is that I was fed thickened fluids and kept under direct observation from the Nurse’s station even in the non-acute ward.

I was taken home for rehabilitation. I spent 6 months on a double Thomas splint day and night, (enforced quadriplegia as I could only move my right hand during the day). I then spent another 12 months on the splint at night and was slowly taught to walk again.

When I returned to school some 21 months later I had to wear an arm splint and have a nap every lunchtime and I spent every Sunday in bed for total rest.

Eventually after some 4 years of intensive physiotherapy I was put back into the community as so many of us were, to function as best I could. I got on with life but noticed that strenuous exercise (dancing, bushwalking, rock-climbing etc) caused me to be very breathless even though I exercised as much and as regularly as my peers. It was often thought I was unfit but I felt there was another explanation. I had already learnt to wake myself up when I became breathless during sleep and not to panic when I was breathless, whatever the cause, as panic just made it all so much worse.

While working as a dialysis technician in the mid 60’s I was diagnosed as having a benign familial tremor, which causes me to be very shaky in the hands and voice and legs especially when anxious. This is a genetically inherited condition and my family has a number of members who have this disorder. I am in exalted company here, Katherine Hepburn (I am told) has the same condition.

In the late 70’s I developed respiratory problems, which were diagnosed and treated as asthma. At this stage I was told that I was acutely anxious and my GP tried to alleviate my acute respiratory problems associated with the asthma attacks by injecting me with Valium. I hasten to add that nearly rendered me unconscious but did not stop the acute breathlessness.

In the 1980’s having moved yet again I met another woman who had Polio and who was using ventilatory support. I talked to her and as a result went to St Louis USA to a Polio Conference to see if I could get any answers to my questions. Following this trip I was provided with a volume cycle positive pressure ventilator and told to use it only as a daytime support mechanism. This helped but not significantly and I eventually drifted away from this treatment. I was still having regular Emergency Department visits with respiratory distress but usually leaving after some treatment with the words “Panic Attack” ringing in my ears.

I was still using a number of “tricks” to be able to sleep including pushing my chin up with one hand to assist in opening my airway, sleeping with the head of the bed up on bricks and waking up and sitting up whenever I became breathless and then breathing deeply and regularly until I felt that I could lie down and sleep again.

In 1993 I became very breathless following an infection and I did not pick up afterwards. I went to a variety of Doctors who eventually determined that I had weak diaphragm and inspiratory muscles and asthma and following a sleep study told me I had hypopneas during sleep. Importantly there was no Carbon Dioxide (CO2) monitoring during this sleep study.

My Oxygen (O2) level would drop to about 91% during sleep but this was considered not serious. However I was prescribed CPAP with low pressures between 4 and 7 cms of H2O. In the first few weeks I found it very hard to use this treatment and I became progressively more tired. After about 12 months treatment I became so tired that I would fall asleep at work at 2 pm each day and I headed off to yet another Doctor.

This doctor prescribed BiPAP S as a “cure-all”. I mentioned my volume cycle ventilator and was told that it was a dinosaur and that no one used volume ventilation any more. Pressure was the treatment of choice.

I found that BiPAP was a much better form of ventilation for me than CPAP and for some months after the change I was feeling a lot better but still having episodes of acute respiratory distress requiring hospitalization although the number of hospital visits was decreasing. I might add that no Doctor to date had been willing to provide me with a diagnosis.

After yet another period of respiratory distress and hospitalization, I found yet another Doctor, a sleep specialist, who having done, you guessed it, another sleep study again with no CO2 monitoring during sleep, decided that I was well enough to fly to the UK mid-1998 with my husband on a business trip. In order to fly I had to use my BiPAP during flight and thanks to the airways not accepting BiPAP machines in flight I had to rent a different machine (VPAP), which had spontaneous/timed mode to regulate breaths per minute.

I moved onto that machine for 48 hrs pre-flight and found to my delight and amazement that I felt better. My husband was also amazed having had no energy for 3 months I suddenly had to be told it was midnight and time for bed. The trip went well although I did get into trouble when the crew depressurized the plane rapidly at 10,000 feet but after a short period we landed and I was able to catch my breath. Much better than other flights without the VPAP when I would turn blue and be acutely breathless for some hours after a flight. Life went on this way but over the last few years I had been feeling progressively older and more tired. I was still working full time and was in very stressful job, which placed 8, 10 and sometimes 12 hour days on me which was extremely stressful and tiring even though the job was quite sedentary.

I had started using an electric scooter for mobility back in 1992 and even with that it became an effort to get out much. My life became a never ending round of work, sleep and housework at the weekends. I sought assistance at work and eventually with no assistance provided, I went on sick leave.

Following this period of stress and worry I developed a pinched nerve in my neck, which led me to consume large quantities of pain medication just to manage a day’s work and although I returned to work part-time I was unable to sustain this level of work and I landed in hospital with acute breathlessness. Unfortunately this time I did not recover and was unable to undertake most activities of daily living from that time for a period of some six months.

During this time my husband and I found that while using the VPAP machine my tidal volume (the amount of air one takes in one breath) was not consistent. It would vary from around 180 mls per breath to 480 mls on another breath. There appeared to be no reason for this variation that we could see.

My physiotherapist looked at a few of the many papers I had on Post-polio respiratory issues (mostly obtained from the Lincolnshire website) and then suggested that we look further at the secondary references and after a long search through many University libraries we tracked down those relevant articles.

It was a paper by Plum and Swanson from 1958 that for us, made such interesting reading. This paper discusses the damage to the brain from polio and the effect this damage has on the ability to breath while sleeping. [Ed note, we have a copy of this 27 page article]

Shortly after reading this paper I passed it to my specialist who, for whatever reason, chose to prescribe more VPAP ventilation while advising me that I was suffering “anxiety that required psychiatric treatment”.

In desperation I dug out my old volume cycle ventilator and started using that for my afternoon naps and eventually full nights.

“Is there anything sweeter than the first rush of cool air into the lungs after a period of breathlessness?”

Source Unknown

Within a couple of days I was feeling very much improved and then I started looking around for some way of getting to a specialist physician who would be able to assist me with the use of volume ventilation as I was very well aware of the dangers of “do it yourself” home ventilation.

Eventually through the Internet I found the Australian Ventilator User’s Network who were kind enough to inform me of a Clinic in Melbourne some 2000 kilometers away. My husband and I drove down to this clinic earlier this year to find that indeed I required volume ventilation and that amazingly we had nearly the correct settings on the “old dinosaur”.

The issues for me were that I did build up CO2 during sleep but as I trained myself to wake up my CO2 levels did not rise to the same levels as they do for many other people. The breathing pattern I had varied in both rate and depth giving rise to nocturnal hypoventilation and the “panic attacks” were in fact respiratory failure.

We purchased a new ventilator, a PLV 100, and after a couple of sleep studies and some other respiratory tests we were allowed to come back to Brisbane, with the added assistance of phone and email contact with the clinic.

Since that time I have improved so much it has amazed all who see me. I am able to swim a kilometer now having been able to swim just 8 meters in February this year, my pain levels have dropped, my brain fog is much less and I can tolerate cold better than previously.

I have just this week driven the 2000 kms (and return) by myself to the clinic for a follow up sleep study which determined that I am well ventilated but still having disturbed sleep probably from pain so now I am on pain medication at night and I am feeling even better than previously. I have also tracked down an appropriate doctor, newly arrived in Brisbane, who specialises in sleep disorders in people with neuromuscular diseases and he has agreed to provide on the spot care for me with annual check ups from the Melbourne clinic.

I am now looking forward to some years of reasonably stable respiratory capability and in the short term to continuous improvement in my muscles of the shoulder back and chest so that my breathing capacity is the best that I can make it. My heartfelt thanks to all who have assisted me in this period.

Margaret has sent us a copy of the 27 page Plum and Swanson 1958 article.

Next newsletter long article on respiratory problems. Please ring/write/email us with any questions that you would like answering on this subject.

Avoidable \uh-voy’ -duh-buhl\ What a bullfighter tries to doBernadette \burn’ -a-det\ The act of torching a mortgageCounterfeiters \kown-ter-fit-ers\ Workers who put together kitchen cabinetsEclipse \e-klips’\What an English barber does for a livingEyedropper \i’ -drop-ur\	A clumsy ophthalmologistParadox \par’ -u-doks\ Two physiciansParasites \par’ -uh-sites\What you see from the top of the Eiffel TowerPharmacist \farm’ -uh-sist\ A helper on the farm.Relief \ree-leef’\What trees do in the spring	Rubberneck \rub’ -er-nek\ What you do to relax your wifeSeamstress\seem’ -stress\ Describes 200 pounds in a size twoSubdued \sub-dood’\A guy that works on one of those submarines
LEARN A NEW WORD A DAY .. sent in by Richard Dyck <rdyck@ISLAND.NET>

NEW BOOK ON PPS Ordering details follow,

Chapter 2 printed with publishers permission.

POST-POLIO SYNDROME

A Guide for Polio Survivors and Their Families

by Julie K. Silver, M.D.

Foreword by Lauro S. Halstead, M.D.

Chapter 2 Post-Polio Syndrome

With the advent of the polio vaccines, the country’s obsession with the disease ended. The vaccines were effective not only in eliminating the polio but also in erasing its prominence on political and health-care agendas. In an amazingly short time, polio was obliterated as completely as if it had never existed. Polio survivors moved on with their lives, the March of Dimes went on to fight birth defects, and politicians promoted other causes. Even medical doctors, if they studied it at all, learned about polio as a historical footnote. Polio was so thoroughly expunged from out national consciousness that it did not seem possible that the nightmares of years gone by could be resurrected.

But in fact, the unimaginable happened. After a long dormant period, during which the vaccines prevented new cases of acute polio, in the late 1970s and early 1980s it became clear that vestiges of the virus had returned to haunt the very people who had survived its initial onslaught. This did not happen in the dramatic, catastrophic way in which polio had appeared in the past, but in a more insidious and persistent fashion. With increasing frequency, polio survivors began reporting new problems that bore a remarkable resemblance to symptoms they had experienced at the onset of the disease decades ago. At first these odd complaints were attributed to a variety of other maladies, including benevolent malingering. As time went on, and more and more polio survivors described a nearly identical set of symptoms, the realization took hold that perhaps these new manifestations were somehow related to the original polio infection. The characteristic symptoms were described in various ways as post-polio sequelae, the late effects of polio, and post-polio muscular atrophy. The term used throughout his book, Post-Polio Syndrome (PPS), is today the common name used to describe these symptoms.

Acute Poliomyelitis and its Relation to Post-Polio Syndrome

Polio is caused by a virus and generally presents with fever, sore throat, diarrhea, and vomiting caused by the virus’s invasion of the gastrointestinal tract. In fewer than 5 percent of polio cases, the virus actually invades the spinal cord and brain, which may result in paralysis and breathing and swallowing problems. The most severely affected individuals died–generally from bulbar polio, which paralyzes the muscles that control breathing and swallowing. Fortunately, the majority of people who had paralytic polio survived the disease and recovered at least partially from the point at which they were sickest.

The initial polio was highly unpredictable in that some who were severely paralyzed appeared to recover almost completely, which others who had less paralysis during the acute phase also experienced less recovery, which resulted in a more significant disability. Lauro Halstead’s book, Managing Post-Polio describes four stages of polio. The first is the acute febrile illness in which the paralysis is most prominent. Generally in a matter of days, the individual’s temperature returns to normal and the second stage begins. This period of convalescence or recovery may last from weeks to years, depending on the individual’s age and the extent of the initial paralysis. Children who had extensive paralysis seem to take the longest to recover. Stated another way, children with extensive paralysis have the opportunity to improve for a much longer period than their adult counterparts, who enter the third stage more quickly. Stage three begins rather indeterminately when the individual reaches a level of maximal recovery. It is described as the stage of stable disability or chronicity, in which polio survivors spend most of their lives. Stage four, Post-Polio Syndrome, is experienced by a large number of polio survivors, but not all. It involves new medical problems that are related to having had polio in the past.

Post-Polio Syndrome is characterized by new symptoms that occur in people with a history of paralytic polio after a long period of stability (generally at least fifteen to twenty years) in which whatever strength they had remained unchanged. Frequently, the most prominent and alarming symptom of PPS is new weakness, either in a limb that was known to be involved in the acute illness or in a limb that was not thought to have been affected. This new weakness often heralds a more pronounced level of disability in polio survivors who believed that the worst was over. Some polio survivors are so taken aback by these symptoms that they do not seek treatment until years after the initial manifestations of PPS. In some instances, individuals simply deny that they are having new problems until their condition becomes so pronounced that denial is no longer possible. For other persons, a lack of understanding keeps them from seeking the medical care they need. Still other polio survivors, expert at managing adversity, may genuinely be unaware that anything out of the ordinary is occurring.

Sometimes the symptoms are so subtle that the only way to measure them is by taking a careful history that

spans many years. A typical scenario is that of John Young.

As a young man, John was able to climb stairs uneventfully as long as there was a single railing. Thinking back, he recalls that ten years ago he began to avoid stairs unless they had a double railing. Five years ago, he began to avoid stairs altogether, and at this point he cannot go up stairs at all–even in an emergency situation. John may not have noticed any changes in strength from week to week; yet clearly there has been a dramatic decrease in his strength, which has led to an increased level of disability over the past decade.

The polio survivors who are used to being self-reliant may take new symptoms (such as weakness) for granted and simply adjust to a greater level of disability. Unfortunately, even the most motivated polio survivors can become discouraged when they finally do seek out medical treatment. They lament, rightfully, that they often know more than their doctors about PPS. Those who are discouraged may not persevere long enough to find polio experts who can intervene and provide help. Others are mistakenly convinced that if they give their doctors enough literature on PPS, these physicians will suddenly become experts and will be able to heal them.

Understanding Post-Polio Syndrome

Post-Polio Syndrome experiences the general lack of understanding that is characteristic of many syndromes. Its precise cause is poorly understood; probably it is several simultaneous elements. This is termed multifactorial, in that many factors are influencing the disease process. In PPS these elements include normal aging, in combination with accelerated aging of nerves that were injured by the initial polio. Another major factor is likely the overuse of nerves and muscles that are trying to do the same amount of work with fewer resources. I sometimes use the example of a construction crew that has lost several of its workers. This crew, which now consists of fewer workers but still has the same house to build by the same deadline, must work harder in order to accomplish the task. As the house progresses, more workers drop out because of fatigue and injury. Now the remaining crew is really at a disadvantage and simply cannot complete the task at the same rate or with the same level of skill. The nerves of polio survivors are the construction crew. In most cases, more than 95 percent were injured during the initial polio. Many nerves died, and the remaining ones had to do their own work plus the work of those that died, in order to power the muscles of the body. Over the years, some of the surviving nerve cells just were not up to the task; when they dropped out, the remaining nerve cells did the best they could to compensate.

A syndrome is a collection of symptoms that characteristically occur together. By definition, a syndrome has no single test to identify it. Thus, it is attributed to someone only if they meet specific criteria established by the medical community, and only after all other reasonable (and testable) conditions have been eliminated as possibilities. For diagnosis of any syndrome, the following must occur: 1) an individual must present with specific symptoms, 2) all other possible causes for these symptoms must have been ruled out, and 3) the individual must meet the criteria established for diagnosis of the syndrome.

Because syndromes do not have specific tests that can unquestionably identify them, they are subject to interpretation. Often their validity is challenged within the medical community. PPS is no exception. Although most doctors believe that PPS exists, a few do not. Generally it is inexperienced health-care providers, unfamiliar with treating polio survivors, who dismiss the syndrome. Those of us who routinely participate in the care of polio survivors have no doubt that PPS is real.

Not surprisingly, the ability to diagnose PPS requires a physician to have extensive experience in treating polio survivors in order to know which symptoms may potentially be attributed to PPS rather than some other illness. The diagnosing physician must adhere strictly to the rules stated above for diagnosing any syndrome and must also be familiar with the criteria used to diagnose PPS.

Diagnosing Post-Polio Syndrome

STEP 1: EVALUATING THE SYMPTOMS

Post-Polio Syndrome is a neurological illness. For it to be named as the diagnosis, the symptoms an individual presents with must be consistent with those that are described as the syndrome. One does not need to have all of the manifestations listed below; however, if a patient complains of symptoms that are not listed, other diagnoses should be considered. Some of the symptoms are weighted more heavily than others, and new weakness–the sine qua non–is the most important criterion. The symptoms consistent with the diagnoses of PPS include the following:

New weakness Unaccustomed fatigue Pain

New swallowing problems New respiratory problems Cold intolerance New muscle atrophy

STEP 2: ELIMINATION OF ALL OTHER POSSIBLE ILLNESSES

It is imperative to understand that PPS is a diagnosis of exclusion. In other words, the diagnosis of PPS is assigned only after other diagnoses have been excluded. In reality, it is impractical to test for all other illnesses that may cause the symptoms described above. However, a responsible doctor will consider alternative diagnoses that may produce the same manifestations as PPS. The treating physician should perform an appropriate level of investigation for an alternative diagnosis by taking a careful history and conducting a thorough physical examination. Subsequent tests should be done with the intention of ruling out any disease that may be positively identified by a particular test and any disease in which treatment would differ from that of PPS.

STEP 3: MEETING THE CRITERIA FOR THE DIAGNOSIS OF POST-POLIO SYNDROME

If steps 1 and 2 have been completed and an individual has symptoms consistent with those described in PPS (and no other cause for the symptoms is determined), then the final step is to make certain the individual meets the criteria (as determined by the medical community) for PPS. Those criteria are as follows:

1. An individual must have a known history of polio. Documentation by electromyographic study (EMG) is generally recommended.

2. The individual must have had some improvement in strength following the initial paralysis.

3. There must have been a period of stability (at least one or two decades) in which the individual had no new symptoms.

4. The individual must present with new symptoms that are consistent with PPS and not attributable to some other disease.

Although these criteria are the accepted medical standard, recently individuals with a history of what was thought to be non-paralytic polio have been diagnosed with PPS. Additionally, there have been instances of persons not known to have polio but now thought to have had a very mild, undiagnosed case of the disease. These individuals may be susceptible to PPS as well. Individuals who do not fit the criteria listed above need to have extensive evaluation before the diagnosis of PPS can be concluded.

Persons at Risk

According to a survey conducted in 1987 by the National center for Health Statistics, there are most than 1.5 million polio survivors in this country. An estimated 40 percent (approximately six hundred thousand persons) are thought to have had paralytic polio. We now know that even polio survivors who were thought not to have had paralysis may be susceptible to PPS. Unfortunately, these statistics are more than a decade old and are useful only in a very general way.

It is extremely difficult to determine how many polio survivors are alive today in the United States owing to a variety of factors such as poor initial record keeping and a lack of follow-up tracking once the epidemics disappeared. Moreover, sometimes polio survivors are not sure whether they had paralysis or not, for the simple reason that a small child who is feverish and in pain often appears lethargic and even limp. This lack of movement may have been mistakenly interpreted as paralysis when in fact none existed. On the other hand, a child with paralytic polio may wrongly have been thought to be exhausted simply because of a more benign illness and may not have been diagnosed correctly with acute polio.

The estimated number of polio survivors who eventually develop PPS is also controversial and ranges from 25 percent to more than 60 percent. Early studies underestimated the number of polio survivors with PPS probably because many survivors had not yet experienced or complained of new symptoms. More recent studies suggest a much higher proportion. As polio survivors age, it is expected that the majority will experience symptoms related to PPS.

The prognosis for preventing further disability is improving with the availability of exciting new research and medical treatments. Because developments in the medical field occur daily and often quite unexpectedly, it is crucial that polio survivors maintain a relationship with a medical doctor who specializes in treating poliorelated problems including, but not limited to, PPS. There is no substitute for a polio doctor’s thoughtful examination in order to assess what might be causing any new ailments and what the best course of treatment might be.

This book is written so that polio survivors and their loved ones can understand more about aging with polio. It is not a replacement for medical treatment. My goal is that it will enable polio survivors to obtain the best medical care available in order to prevent further disability and improve their quality of life as they gracefully age.

ISBN 0-300-08807-8

[Dr. Silver’s mother, uncle and grandfather all had polio so she writes not only from a professional view but also a personal understanding. The book is easy to read and it is possible to dip in and out of chapters.]

This book is hardback, 280 pages. Chapter titles are:-

Foreword

Preface

1. Polio – A look back.

2. Post Polio Syndrome.

3. Nonparalytic Polio and Post Polio Syndrome.

4. Finding Expert Medical Care.

5. The EMG Controversy.

6. Prevailing over Pain.

7. Preserving and Protecting Your Arms.

8. Sustaining Strength.

9. Fighting Fatigue.

10. Controlling Cold Intolerance.

11. Respiratory Problems.

12. Swallowing Issues.

13. Exercise Controls.

14. Energy Conservation and Pacing.

15. Nutrition and Weight.

16. Preventing Falls and Further Disability.

17. Keeping Bones Healthy and Strong.

18. Mobility.

19. Bracing, Shoes, and Assistive Devices.

20. Wheelchairs and Scooters.

21. Surgical Considerations.

22. Complementary and Alternative Medicine.

23. Designing a Safe and Comfortable Living

Environment.

24. Insurance and Disability Benefits.

25. Sex and Intimacy.

26. Coping with Polio and Post Polio Syndrome.

Notes

Index

Ordering details.

The retail cost of the book is £19.95. plus £2.00 p&p. We have obtained a discount and cost to members is £13.95 plus £2.00 postage and packing. Please will you send request and remittance to the Secretary, 12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR. Please allow 14 days for delivery.

P.S. A lady member in Sevenoaks Kent area would like to be in touch with some polio survivors local to her with a view to meeting or being in phone contact. She spends part of the time each year with her daughter in Boston, USA. She is a patient of Dr. Silvers and will be seeing her again shortly at her new PPS Clinic. Please write c/o LincsPPN.

Survey.

We had hoped to bring you the results of the survey in this issue. However we are still receiving forms back from overseas members, who did not get their forms until April. Obviously we want to include the views of as many of you as possible. Therefore the results will appear in the August edition.

If you have still not sent your form back, please do so by 16th July. Extra forms are available if you have lost yours and would like to give us your views. Please ring Janice Eary Vice Chair on 01663 743870 or e-mail janiceeary@hotmail.com.

POST-POLIO SYNDROME

FROM A POLIO SURVIVOR’S POINT OF VIEW

HILARY HALLAM

CHAIR, LINCOLNSHIRE POST-POLIO NETWORK

Physiotherapy Department

Marie Thérése House St Michael’s Hospital, Hayle, Cornwall.

Thursday 19th July 2001 – 2.00 – 4.00 pm

Did you have Polio?

Are you a medical or allied professional who could be treating clients who had Polio?

If the answer to either question is YES,

please telephone to secure a place – (01736) 758875 Free Parking

Refreshments available – nominal fee of 50p Donations to the Lincolnshire Post-Polio Network welcomed

NUTRITIONAL ADVICE TO COMBAT OSTEOPOROSIS

by member Vivien Holland

When we read that one in three women and one in twelve men will get osteoporosis it naturally gives us concern. This is especially so, when we read how important exercise is and maybe we’re unable to do much at all. We tend to feel we must be at very high risk. Obviously if some exercise is possible, that would be beneficial, although each one must assess this individually as it would be quite counterproductive to aggravate painful muscles or bring on exhaustion. The good news is that there is a lot we can do to combat osteoporosis or even reverse it to some extent through good nutrition, so today I’d like to discuss this.

As we get older we tend to produce less stomach acid, needed for digesting food, and this is needed for absorbing calcium from our food along with other nutrients. If you are troubled with indigestion, you might assume you have too much stomach acid, but this is often not the case. You can test this out by having a teaspoon of cider vinegar in a little water at the start of a meal. If you have low stomach acid, this will help you digest your food, but on the other hand, if your problem is too much acid, your discomfort will increase, and you’ll know that isn’t appropriate for you. If it does help, you could make a point of having cider vinegar before each meal, or perhaps half a grapefruit or a salad dressing with lemon juice or vinegar with the meal. Calcium supplements vary considerably as to how much is absorbed, especially in people with low stomach acid. For instance, calcium citrate, calcium lactate or calcium gluconate are absorbed much better than calcium carbonate.*

It has been noted that osteoporosis is most prevalent in the western world and many link this to a diet high in animal protein and refined carbohydrates such as foods made with white flour and sugar. Another factor is the high phosphate content of the carbonated drinks that have become so popular. Years ago they used to be just an occasional treat, but now many drink them on a daily basis. These foods disturb the acid/ alkali balance in the body. Calcium from the bones is then used to help bring about balance and it is then excreted in the urine. Smoking, coffee and alcohol all contribute to lower bone density, so try to give up smoking and moderate coffee and alcohol if necessary.

Aim for a diet rich in vegetables and fruit (dark green leafy vegetables and berries such as blackberries, raspberries, bilberries etc. are especially good), wholegrain cereals, lentils and pulses, along with moderate amounts of fish, meat, eggs and dairy products. As people get older the majority seem to find that they are better eating small meals but more frequently – possibly five or six times a day. These will be easier to digest, will help to keep up energy levels and, provided the meals are not too big, will even help to keep weight under control. It’s very important, though, to choose foods that are nutritious and to chew thoroughly. If you have a sweet tooth it’s especially important to choose sensibly. Dried fruits, such as sultanas and raisins, but also prunes, figs, dates and apricots are packed with minerals and can be very satisfying when you must have something sweet. If you are able to do some baking, recipes can be modified to use wholegrain flour with dried fruit used for flavour and sweetness, and very little need for additional sugar. I like to add extra ingredients like an ounce of wheatgerm or soya flour which will make a cake more nutritious.

Although I’ve mentioned that high animal protein diets are not recommended, quite often people don’t eat enough protein. Proteins are like building blocks needed throughout the body, including the bones where it forms the latticework around which calcium and other minerals are deposited to form bones. Also, insufficient protein is usually responsible for that weak feeling when you feel you must have something sweet. Have a little balanced meal with some protein instead, and make sure you eat before you get really hungry. This will help to keep energy levels up. Such a meal would contain a little protein, some unrefined starchy food along with some fruit, vegetable or salad. It could be something as simple as a chunk of cheese and an apple, or some nuts and raisins. There isn’t space to give much detail on meal suggestions here, but this is something I’d like to deal with another time.

Finally, just a very brief word about hormone treatments. This is a very individual matter and something you’d need to discuss with your doctor. Some women do get benefit from conventional HRT and some studies combining this along with nutrition and appropriate supplements have shown good results. Another type of hormone treatment is undergoing trials at the moment and looks very promising. Dr. John R. Lee in America has been using Natural Progesterone Cream with his women patients for a great many years. Initially he used it with women who were unable to take conventional HRT treatment, but then it became his treatment of choice. Not only did he find it helped their menopausal symptoms but their bone

density increased too, sometimes quite dramatically. There are doctors in this country that will advise you on this, but they are in the private sector. For further information, write to the Natural Progesterone Information Service at P.O. Box 24, Buxton, SK17 9FB, enclosing a stamped addressed envelope. Also, the National Osteoporosis Society have useful leaflets that give practical information on all aspects of osteoporosis. Their address is P.O.Box 10, Radstock, Bath BA3 3YB. Tel: 01761 471771.

* If you’d like a leaflet on appropriate supplements to take, you can write to me with an s.a.e. at 32 Green Lane, St. Albans AL3 6EZ.

<vivienholland@hotmail.com>

Sharing how you manage has helped me.

We all need reminders to make more use of WC’s/ scooters and not take chances when it comes to falling down. Its got to be one of the most difficult things in all of this that we have to accept. This not walking while we still can. Yes, we do need the exercise and can’t just sit all of the time. But, to use it at the times we are more vulnerable to fall seems to be key. The secret is to learn just when that is. The only way I am (very slowly I’ll admit) learning it is when folks like yourself share how you are doing it.

Yes, spirituality is very important. I know I’m no good at accepting anything totally on my own, by my own devices. Its something I have to pray for, along with the ability to stay in the now.

I’ve long ago learned that I can do (not do?) almost anything for a short period like one day, sometimes one half a day. Its when I think about this is now “forever” that I get rebellious and into trouble. At the same time I am learning to really savor and appreciate each thing I either really can or think I can still do.

This week and next it is redoing our front yard. We started last weekend. I found I really can’t lift a shovel of dirt (not even a half shovel) so Lon had to do all the spreading of the load of top soil that came on Friday. I helped by raking. I overdid it and knew I was when doing so. But, I choose too as I know that its something I won’t ever do myself again. So I savored every moment as we worked. (even my frequent breaks. I think I took about three to Lon’s one).

I felt the ocean breeze on my face, whisking away the perspiration. I felt the clumps of dirt beneath my feet and the feel of it against the rake. I didn’t really do that much, but enough to capture the feelings to savor on future days when I will be watching, directing and maybe serving cool drinks to those doing the actual work.

The next day “we” put in a concrete block path with borders. I did help with the measurements. And succeeded at handing Lon three squares before I had to resign that position. When he had four or so in place he would shovel dirt on top and using the rake I’d get it in-between the spaces. He had to tamp it down. Really, I thought I was doing good till he came along and with one good tamp got it down another inch! VBG… (very big grin) I ended up giving him lots of moral support.

Now its time to plant our groundcover. I am proud that today I got FOUR plants in the ground. Did two in the morning and two more this afternoon. I figure at this rate it will take me an entire week to get the plants in the ground. But, on Saturday Lon will be home and I’m betting it will get finished as he will probably get three or four in for each one I do. But, I don’t care. It’s what I can still do.. and I’m savoring it. I know that any future gardening I do will be raised beds and already tilled dirt. And, you know what that will be just fine.

Even now while the flower bed between the house and pathway isn’t raised its only 2 feet deep and I’ll be able to easily weed it while sitting on my camp stool. Feeling really good about getting done what I did. So what if the laundry is stacking up and the dishwasher not yet empty. I had to choose.. the plants won! <VBG>

From: Ellen also known as Moon Shadow <lonellen@HARBORSIDE.COM>

Free Directory Enquiries from BT.

Did you know that as a disabled person you can get free directory enquiries? A fact that BT keep underwraps! Follow these simple steps to get you free calls to directory enquiries.

1 Call 195 and ask for registration.

2 Give them you name and address and they will

send you a simple form to complete.

3 Complete the form and ask you district nurse or GP

to stamp and sign form, return in prepaid envelope.

4 Get PIN from BT and enjoy!!!

5 Tell all disabled friends/colleagues.

Yash and Greg Airth <airths@yahoo.co.uk>

PS We will be at Motability Roadshow on June 16th.

Ironing from a man’s point of view

I immediately take all my clothes that would need ironing from the washer just as soon as the wash cycle

is ended. I shake them out and put them in the dryer with a fabric softener sheet for about ten minutes and then, one

garment at a time (restarting dryer each time until through) I remove and hang up the clothes, smoothing out any wrinkles as I go. I then let the clothes air dry. My trousers especially have a better crease when I do it this way. If the clothes dry real quickly, I start hanging them up even before ten minutes are up. The purpose for putting them in the dryer is to activate the fabric softener sheet.

If I forget and let the clothes dry all the way, I just seem to have more wrinkles. If I let the clothes set in the washer without getting to them as fast, I seem to have more wrinkles. But, you know, since I seem to have more wrinkles myself these days, wrinkles aren’t something that worry me too much. I guess wrinkles are God’s way of telling us not to worry too much about the little stuff.

Kenneth L Rhea <klrhea@ebicom.net

Ironing in the Shower without effort!

A lot of items can be “ironed” in the shower! As in , when one takes a suit out of the luggage at a motel the night before a wedding, etc. Slacks, skirts, some shirts and so forth. Hang up on a hanger in the shower (away from the nozzle where they don’t actually get wet.) Then the steam, or hot moist mist from the bath ‘relaxes’ the fabric. Next a.m. presto, a de-wrinkled pair of pants, blouse or whatever hanging from the towel rail, waiting for you.

Philip Thetford <phillipt@BELLATLANTIC.NET>

Packing that leaves less creases.

My life has changed considerably in the last couple of months since I found PPS and new friends on the Internet. I have just joined and thought you might find this tip helpful. When travelling with a friend she packed each item, blouse, skirts, etc., in an individual gallon zip lock bag. She left just a tad of the air in it. I about died laughing when she opened up her suitcase, but she had a great sense of humor. I’m not cruel, my reason for laughing is that I used zip lock bags for everything and washed them out for reuse. My kids thought I was a tad loose minded. ☺

“Susan E. Karnes” <SEKARNES722@AOL.COM>

IN MY DREAMS

In my dreams

I walk without crutches or braces. In my dreams

I run and dance to the music of my mind, Whirl to the stars on wings uplifting,

Visit mountains and lakes, Mysterious India, and frozen tundra.

My legs inert go nowhere.

My soul flies free and roams anywhere In my dreams.

©Arleen Curtis <aecinfla@yahoo.com>

I had polio in 1953, age 23. I had two children before and two children thereafter. Couldn’t run, but could walk all day, could climb up a curb or down one curb, push furniture around, climb on a chair by way of two super-strong arms – thus able to paint a room, or even wallpaper.

PPS began 1984, when I acquired braces for the first time, and it’s been downhill ever since. I walk in the house using walls and furniture, crutches outdoors or electric cart. Upper body strength is poor now although I didn’t have any noticeable polio weakness in arms at the time.

I moved to Florida in 1993 (go outdoors any time) and during the winter “season”, am in a mixed chorus with weekly rehearsals, play shuffleboard leaning on a crutch (and win), play boccia and win, and play pinochle year-round. Grandchildren are growing up but range from age 2 1/2 to 22. Maybe see them once a year.

I travelled to Germany alone in 1982, used crutches for speed. Went to Japan in 1985, and Europe (London, Paris, Florence, Venice, Rome) in 1986. Both those last trips made the PPS worse, but I wouldn’t trade the experience. I’ve seen Notre Dame, the Coliseum and those are precious memories. If I had the strength, I’d go on a Kenya safari trip, or Egypt to see the Pyramids, but I can’t do that anymore. I’m 72 and he’s 7 years older and doesn’t like walking. He says I walked him all over Europe, can you believe it??? In Rome, we took the bus, I asked dove’, meaning where, and the passengers understood and told us where to get off the bus. But then we walked 3-4 blocks, to a square, sat down and had a beer, and I’d ask dove’ and off we went another few blocks, another square, this time an ice cream so I could sit and rest. That’s how I walked him all over Europe!(Grin). I like reading, movies, science fiction, Harry Potter, the Ring Trilogy. I was President of the Lincoln Nebraska Polio Support group for a few years.

If anyone in the UK without email would like to correspond then please send letters via Hilary.

Arleen Curtis <aecinfla@yahoo.com>

Could this be a prescription for PPS?

You need only two tools. WD-40 and duct tape.

If it doesn’t move and it should, use WD-40. If it moves and shouldn’t, use the tape.

THINGS THAT WORK:

1 Flies or bees bothering you? Spray them with

hairspray and they will take a quick dive.

2 Sealed envelope – Put in the freezer for a few

hours, then slide a knife under the flap. The

envelope can then be resealed. (hmmmmmm…)

3 Use Empty toilet paper roll to store appliance

cords. It keeps them neat and you can write on the

roll what appliance it belongs to.

4 Whenever I purchase a box of S.O.S Pads (Steel

wool), I immediately take a pair of scissors and cut

each pad into halves. The scissors get sharpened

this way too.

5 Use vertical strokes when washing windows

outside and horizontal for inside windows. This

way you can tell which side has the streaks.

Straight vinegar will get outside windows really

clean.

6 Candles will last a lot longer if placed in the

freezer for at least 3 hours prior to burning.

7 To clean artificial flowers, pour some salt into a

paper bag and add the flowers. Shake vigorously as

the salt will absorb all the dust and dirt and leave

your artificial flowers looking like new!

8 Spray your Tupperware with non-stick cooking

spray before pouring in tomato based sauces and

there won’t be any stains.

9 Wrap celery in aluminum foil when putting in the

refrigerator and it will keep for weeks.

10 Cure for headaches: Take a lime, cut it in half and

rub it on your forehead. The throbbing will go

away.

11 To get rid of itch from mosquito bites, try applying

soap on the area and you will experience instant

relief.

12 Ants, ants, ants everywhere … Well, they are said

to never cross a chalk line. So get your chalk out

and draw a line on the floor or wherever ants tend

to march. See for yourself.

13 When you get a splinter, reach for the scotch tape

before resorting to tweezers or a needle. Simply

put the scotch tape over the splinter, then pull it

off. Scotch tape removes most splinters painlessly

and easily.

14 Now look what you can do with Alka Seltzer.

* Clean a toilet. Drop in two Alka Seltzer tablets, wait twenty minutes, brush and flush. The citric acid and effervescent action clean vitreous China.

* Clean a vase. To remove a stain from the bottom of a glass vase or cruet, fill with water and drop in two Alka Seltzer tablets.

* Polish jewellery. Drop two Alka Seltzer

tablets	into a glass of water and immerse the
jewellery	for two minutes.
* Clean a thermos bottle. Fill the bottle with water, drop in four Alka Seltzer tablets, and soak for an hour (or longer, if necessary).
let

* Unclog a drain. Clear the sink drain by dropping three Alka Seltzer tablets down the drain followed by a cup of Heinz White Vinegar. Wait a few minutes, then run the hot water.

Prayer for the stressed

Grant me the serenity to accept the things I cannot change, the courage to change the things I cannot accept, and the wisdom to hide the bodies of those I had to kill today because they got on my nerves. Also help me to be careful of the toes I step on today as they may be connected to the feet I may have to kiss tomorrow.

And help me to remember – when I am having a bad day and it seems that people are trying to wind me up, that it takes 42 muscles to frown, 28 to smile and only 4 to extend my arm and smack someone in the mouth.

Reprinted with permission from the

Rancho Los Amigos Post Polio Support Group Newsletter – February 2001.

Dr. Jaquelin Perry sent us a letter from one of her Post polio patients who has successfully lost weight without exercise. Dr. Perry wrote “This patient attends my postpolio clinic, and thus, I have witnessed her progression in this weight loss effort. I asked my patient to write up the story of her weight loss without exercise, so that I could share her success story and practical steps with other post polio patients who are struggling in this same area”. This person wishes to remain anonymous, but here is her story.

Weight Loss With NO Exercise – Testimonial from a Post Polio Patient.

I became overweight at about nine years of age. At the age of seven years I had an experimental (then) surgery to stop the growth of my right leg (polio leg) so it would not be shorter (estimated 10”) than the left at maturity. It was estimated I would be about 5’6” at the end of my growth, however, I am 4 feet 7 inches tall (I think I have shrunken now). I have been fighting my weight since then. About four years ago I was at my top weight (324 pounds and 4’7”). I did have some excuse. For the first two years I was on steroids for out of control asthma. My weight went from about 160 pounds to 324 pounds. My health was bad, my asthma was bad, and I couldn’t move well, however, I was still walking at this point. I also did not have a good balanced diet, although I am not a snacker.

The scare I had that shocked me into losing weight was the news I had Type II Diabetes. I had seen the results of diabetes in others (blindness, limb loss and death) and I wanted no part of this. As part of my medical care I found the secret to my eating. A dietician showed me I was eating entirely too much for my activities, especially at dinner. I also loved the wrong foods like breads, pastas and potatoes (the starches). Sometimes my meals consisted of two or three starches at a meal, usually at night. The portions I served myself were also too large for my activities.

Now my two largest meals of the day are breakfast and lunch.

Breakfast: Eggs (or egg substitute), meat, potatoes (no toast) or toast (no potatoes) and orange juice.

Lunch: The largest meal at 1 – 2 p.m. meat, starch, vegetables. I have a problem here because I do not like salads! Those are for rabbits its!

Dinner: The evening meal is usually my smallest meal consisting of soup, a sandwich, and fruit (mostly canned).

Over time I have lost my taste for sweets. When I went off my cholesterol medications my blood pressure retuned to normal. I do eat some sweets once in a while. I take 2 Senior multivitamins every day, 1 Calcium, 2 vitamin C (mid morning and PM). Sometimes I have a yoghurt, cottage cheese, or fruit with a hard cheese for a snack. My eating depends on the energy level I| have to fix a meal and pain stamina I have for that day. If I don’t eat well mid-day or evening. I drink Slim Fast at bedtime or if hungry during the night.

I do not count calories! That gives me brain freeze! I look at portion size and salt free seasonings (I have a fluid retention problem). I use onions, and garlic to enhance food taste. I do not fry foods or use much cooking oil or butter. Microwave food is great!

The portion size taught to my by the Dietitian.

Meats: ‘Fist Size’ for any meats. The meat (any) is the size of one large chicken thigh, medium breast, or two small thighs. It changes with the size of a person’s fist. 1/4 cup starch (1/4 cup equals one large ice cream scoop). Cooking instructions for regular mashed potatoes work with Molly McButter or Cremora. 1/2 cup each of two types of vegetables.

Snack foods: small yoghurts and cheese bricks are good snacks. I even eat peanut butter snack crackers.

My activity level came to a halt about one year into losing weight. When I started modifying my eating. I was still walking (three years ago). As of three years ago, I became a couch and wheelchair potato. The only exercise I get now is transferring from couch to scooter (in the house) and changing positions on the couch.

I did not know it was possible to lose weight and not exercise. But by just cutting down on the volume of food and changing the way that I eat, I have gone from 324 pounds to about 175 lbs. or less. I am trying for 125 – 130 lbs. (the weight I was when I got married). I am now much healthier, my blood sugar is normal, and my asthma is minimal. I have lost three dress sizes. Now I have to figure out how to lose more from where I sit! I am a living breathing, real live post polio patient who found out she COULD lose weight with NO EXERCISE!

Rotator Cuff Surgery – and PPS.

This has been compiled with the help of polio survivors at different stages of having this surgery over the last six months. My thanks to Janet, Barbara, Peggy, Richard and Anita. The rotator cuff is your shoulder joint. The surgery can be done in two ways, open or arthroscopically.

More and more polio survivors with painful shoulder/s are eventually having/requesting an MRI and finding that the damage to their rotator cuff is more than their doctor expects. (“orthopedic doctor she referred me to, jumped to the conclusion that it was only a small tear, and that I wasn’t a candidate for surgery…all without doing any x-rays, MRI”). Normally one of the rotator cuff muscles is torn by a fall or injury. (“walked around the bed to get to the bathroom in the dark. I tripped over a laundry basket and fell”). Polio survivors can have all three muscles torn, and sometimes the biceps tendon is also frayed. Rotator cuff tears can happen after a fall or injury to the shoulder but in polio survivors this can also come on over time due to the many years of using ones arms as extra to the legs to rise and lower from chairs/floor/transferring.

For a polio survivor – especially one who is already experiencing some late effects of their polio – any surgery has to be considered carefully. Surgery on your shoulder/s means that at least one arm is going to be out of action for some considerable time post surgery. Full recovery with 90 to 100% return of function from rotator cuff surgery for a polio survivor can be nine months to a year. There are stages to go through and it is imperative to assure yourself that you can transfer yourself or with help for all actions of necessary daily living till you are able to use this arm normally again. Until you strap this arm to your body you may not realise how much you do with it. (Further info later in article). The following are the general instructions for post surgery.

• Six weeks with no use of the arm at all. The arm is

held in a sling and swath. There are below elbow

and hand exercises that you need to do to keep the

swelling down. Therapy is necessary to ensure that

your arm does not stiffen up and that range of

movement is kept. The therapist will move your

arm for you ensuring that you do not use the

repaired muscles. (“It’s painful, bearable but

essential”)

• Six weeks to six months you can now move your

own arm with restrictions and you must put it daily

through its range of movement and work to a

treatment plan. (“You cannot use your cane with

this arm, you cannot use it to transfer, you cannot

lift more than the weight of a mug of coffee”)

• From six months on you can start lifting more

weight, using that cane again, and start using it to transfer. (You will be given extra exercises)

Pain after the operation is high. (“I was asked how bad my pain was between 1 to 10, I said 20. I told her it was easier to have a baby, and I meant it.”) Richard had a local anaesthtic pump directly into his shoulder for three days, plus he had a morphine pump for 36 hours whilst he remained in hospital. After this he was prescribed strong painkillers and over the counter analgesics in addition. He had to take all these on a regular basis plus use heat and freezer packs. (Said by many “My arm muscles would go like ‘hard rocks’ which was very painful”). The pain gradually lessens but this continues for some months. Janet now eight months post surgery “The pain is still so bad from the shoulder down to the hands. But, I’ve stopped taking regular Tylenol as my fingers started to swell.” Richard now three and a half months post surgery “at last I am having some pain and drug free hours but I still need some over the counter analgesics most days”

The biggest problem is frustration in not being able to use the arm as you want to. Depending on how much use you have of your other three limbs this can cause a variety of problems. What you need to do is to practice pre operation and plan ahead. Using aids and assistive devices that you might only need for a while post surgery to help and make sure you do not fall and damage the surgery is essential.

Finding comfortable positions comes a close second especially as sleeping on the operated side is not possible for some months. Janet says “I made a nest with the bed pillows and got in the middle”. Having a variety of sizes of pillows available is helpful.

Before you agree to this operation ensure the health professionals involved are fully aware of polio and its late effects. It is imperative that your muscles, in all limbs, are graded correctly. In the States medical professionals specialise far more than in the UK and one surgeon does arms and another legs and sometimes even just parts of them. Therefore it is imperative that they realise what you do with this arm, and that having it out of action for this length of time could make a drastic difference to your life.

It is advisable to ensure that your surgeon and anaesthetist are aware that polio survivors can experience problems with anaesthesia and positioning on the table and in recovery. Provide them with copies of the articles on anaesthesia and PPS in case they have not read them. If you are still concerned then ask to speak to them again explaining that you are not questioning their knowledge or expertise but for your own peace of mind you need to be sure that they do not think you are ‘an awkward patient’ but an informed one about your own condition and previous experience.

Richard says “shortly after I came round I was having difficulty breathing and they raised the back of the bed to help but made it worse. I needed to be laid flat with a small roll of material under my neck and it took him some minutes before they understood. As soon as they did this then I could breathe so much more easily.” As for the most part we are totally unaware of what happens in the operating and recovery room it is essential that you ask for an honest report so that if you have another operation you can pass this information on.

It is important that your stay in hospital, which is likely to be longer than for a non polio, goes well. Whereas for many non polios this can be done in a day surgical unit, it is likely and preferable that you stay at least one, possibly two nights. If you have special needs with transferring, toileting, dietary, then it is advisable to have someone with you who understands all this and can do the talking for you for those first few hours/day or two. It seems surprising that facts like ‘no dairy’ can produce food with “oh its only got 2% milk in it, I am sure that won’t harm you”.

Most hospitals procedure is to ask you NOT to bring your own drugs in with you. If you need to take these drugs at a certain time of day – even though you have pre informed them of this fact – then it is advisable that the person with you has these drugs with them in the event that they have not been prescribed. Richard “I take regular drugs that I could not take for 16 hours. As soon as I was aware enough I asked for these drugs to find that they had not been prescribed and we had to use those brought with us”. In Britain we are usually given drugs for a few days to take home with us giving us time to get someone to take our discharge letter to our doctor and the next day pick up the prescription that has been advised in the letter. In the States you are given a prescription on the day you leave starting with the next dose after leaving hospital. With drugs only four hours apart this does not allow a lot of time, but with the knowledge in advance you can prepare for this.

As mentioned before it is really helpful if you can meet the post operative therapists before the operation so that they can see how you manage your daily activities. The best thing you can do is to put that arm in a sling for a few hours over two or three days and go through your actions of daily living and pick out where there are problems. You can then show this to your post operative therapists and between you work out ways to cope, and what aids you might need to use for a few weeks/months to make life easier. It might mean that to begin with you need someone with you 24 hours a day to assist with toileting, dressing especially if you wear orthotics or need both hands to put on shoes, and making meals for you.

The other reason for meeting the post operative therapist pre the operation is that apart from seeing how you do what you do (which is likely to be different from the norm). They can also go through the post operative exercises with you so that you know what to expect and they know how far and how often you can do them now. Its useful to do these exercise with both arms if you can to ensure that you do not stiffen up. Remember that unless they are and have been working with polio survivors who have late effects of polio they may not understand that you cannot repeat the exercises the number of times they would expect from a non polio, and that you may not be able to do more than a few minutes at a time. (“They thought I was being a wimp till they read some info on PPS”) By meeting with them pre operation you can explain and show them how you use your muscles and work out a possible schedule. Pain will be a factor post operation, and their moving your arm passively for those first six weeks will hurt but it’s absolutely necessary to keep your range of movement and prevent adhesions.

If you use a chair or scooter and are told that you cannot have it in hospital then ensure that the manual chairs that you might have to use are wide enough to accommodate you and your arm in a sling, do have removable sides and foot rests if you will need them moved to transfer.

Richards therapist – Cordell Carmalt – provided us with a set of exercises for the six weeks to six months period. Richard worked out a system that brings these exercises into his daily routine, so that he does them bit by bit during the day, pacing them with his level of daily activity. For instance when watching TV he will do a couple of arm movements each time there is a change in program or advert break. This way of pacing these exercises has worked well for him. I also do some of these exercises and my range of movement is improving slowly. Remember you must check with your GP or therapist before starting any non prescribed treatment.

peggym@home.com

Anita Bjorling <anitabjorling@HOTMAIL.COM>

Dowel Exercises 1” PVC pipe 20” to 24” long

Start Lying Down.

Keep elbows straight and

pull dowel back as far as possible. Stretch that shoulder!

Return to Start and Repeat.

SIX WEEKS POST ROTATOR CUFF SURGERY EXERCISE PLAN FOR POLIO SURVIVORS.

IMPORTANT – This exercise plan was prepared for a specific person to start six weeks post rotator cuff surgery. If you have this surgery your therapist will give you a plan for you. However, you can use these exercises to help you keep supple. Check with your GP or therapist first that it is OK for you to do each exercise. Start slowly repeating them to your level, rest in between if necessary. You need not do them all at once, try fitting them into your daily pattern of living. Cordell Carmalt OTR/L, Bradenton, Florida.

Start Lying Down.

Start with dowel below chin level if possible.

Push straight up. Try to touch the ceiling by lifting your shoulders off the bed.

Return to start and repeat.

Sitting Up.

Start with the dowel

under your nose.

Push straight up high as you can. Return to Start and repeat.

Start Lying Down

with dowel above head.

With elbows straight, move dowel as far to the right as possible. Then to the Left. Stretch those shoulder blades.

Do five each way if possible.

After 2 weeks,

do these first three exercises sitting up and add the following one.

Start lying down.

Shoulder Abduction.

Slide arm on bed

Then turn hand so that palm faces you above shoulder height.

Try to bring arm up to the side of your head. Go as far as possible,

Then let your carer/therapist stretch you as far as you can go.

Return to Start.

Repeat.

RANGE OF MOVEMENT / STRETCHING

6. Rotator Cuff.

Start lying down and with arm at side. Pull Arm into ‘I Swear’ position. Return to Start without stretching. Repeat

7. Shoulder Flexion.

Start lying down with arm at your side. Keen elbow straight.

Pull arm behind head as far as possible. Use all your strength coming back,

then have carer/therapist stretch you as far as you can stand it, but keep trying to pull the arm back with your own muscle power (hurts less after rotator cuff surgery if you do this)

Return to start. Repeat.

Stretch should be done every day until you have achieved normal range of motion.

Start lying down

Place arm in internal rotation as shown.

Rotate your am back and try to touch the bed with the back of your hand.

Then rotate the hand downward and try to touch the bed with the palm of your hand.

Have carer/therapist stretch you in both directions. Try to pace yourself.

Remember if your shoulder is comfortable at your end of range of motion when you are exercising you are not gaining!.

Go into the Uncomfortable Zone.

Start sitting with arms down. Pull up to the ‘I Swear’ position.

Pull hand back as far as possible. Return to Start and Repeat.

10.

Standing. Place one hand on a table or the back of a chair and lean over slightly. Have your arm go in ever larger circles, then side to side,

then front to back.

This loosens the shoulders. Make movements

as big as you can.

11.

Face wall with hand at side.

Keeping elbow straight, but barely touching the wall with ‘walking fingers’ bring arm up as high as possible. Mark progress with pencil or tape a yardstick to the wall to mark progress. Push for higher and higher.

12.

Face to the right/left and abduct your arm up the wall as far as you can. Barely touch the wall use ‘walking fingers’. Mark your progress. Once you can get it higher than your shoulder

turn your hand palm up to go higher.

Other exercises that you can do to help you keep your arms supple and prevent oedema post surgery. In the short run oedema (swelling) delays healing and increases pain and stiffness. In the long run this causes fibrous deposits in tissues, making them seem woody, causes scars to form between layers of tissue and reduces the nutrition and elasticity of nerves, vessels, joints and muscles. These exercises can be done at any time to help keep you supple. Remember to do them to your own pace and repeat as often as you are comfortable with. Try fitting them into your daily routine.

1 Lying on your back with your arms by your side raise your arm from elbow to hand up and

down.

2 Sitting with arms by your side turn your wrists over and back again, up and down.

3 Make a fist, being sure each joint is bending as much as possible. Relax and then straighten

fingers as much as possible. Relax and repeat.

4 Holding hand palm upright and in line with arm bend top two sets of knuckles down and back.

5 In same starting position bend all fingers down to 90 degrees and back again.

6 In same starting position touch thumb with each finger.

7 In same starting position touch base of little finger with thumb.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – Requests for Information Packs, Leaflets, copies of articles Hon. Sec. Wendy Grimmitt <CWGrimmitt@aol.com>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – August 2001

Articles for publication by July 20th – Publication date 1.8.2001 Founder & Chair – Hilary Hallam <linpolio@legend.co.uk>

Vice Chair – Janice Eary <janiceeary@hotmail.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Honorary Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com> Committee Members – Phil Bilton, John Eary, Ted Hutchinson, Jennifer McGowan.

MOTABILITY ROADSHOW FREE ADMISSION

15th and 16th June 2001 10.00 – 6.00 17th June 2001 10.00 – 4.00

Transport Research Laboratory, Crowthorne, Berkshire.

• test drive a wide range of adapted and specialist

vehicles, remember your driving licence,

• over 200 exhibitors of outdoor mobility products

and services, 12 vehicle dealers

• all facilities fully accessible, and much more.

For further details and your Test Drive Registration Form, contact Mobility Choice on 0870 7703222 Fax. 01344 770950 or visit our website at

<www.justmobility.co.uk/roadshow>

Meet other members attending 16th June 2001 – 2.00 p.m. Refreshment Area

Phone contact on day – Hilary – 07748 185065

In Search of a Service – the Experiences of People

with Neurological Conditions.

This new report by The Neurological Alliance is being launched at the end of a days events in London on June 20th 2001 at the Paragon Hotel, Earls Court. The date has been picked to tie in with the week long World Congress of Neurology taking place at Earls Court. Guests from this congress are being invited to the launch.

‘The Neurological Alliance consists of 48 organisations representing people with several hundred neurological conditions. During the afternoon we will be demonstrating how by working together patient groups and professionals can pursue the highest standards of service and care for the estimated three million people affected by a neurological condition.’

We are having a stand and attending the afternoon and early evening events. Report next newsletter. If anyone in the surrounding area is interested in meeting up please contact us on 01522 888601. If voice mail connects leave name, phone number and mention June 20th.

Linc Pin Volume 3 Issue 5 Read More »

Linc Pin Volume 3 Issue 4

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 4 – April 2001

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

CONTENTS Editorial – page 2

TRILLIUM

by LaVonne Schoneman – page 3 Retirement through the eyes of a Child – page 3

THE LATE EFFECTS OF ME

Can they be distinguished from the Post-polio syndrome? Dr. E.G. Dowsett MBChB, Dip Bact. – pages 4 to 10

The WHO and who?

Cilla Webster – Founder – Post-Polio Network Z A – page 11 to 13

The Family Culture and Relationship with Disability. by Margaret Backman, PhD. Clinical Psychologist – page 14

Stress Management for the Mind, Body and Spirit: the SHARED method Kathryn P. Fraser, PhD. pages 15 to 17 How do you handle adversity? page 18

Tips For Living With Dysphagia by Polio Survivor Ellen Riddle – page 18 to 20 Roger Brown from Melbourne Australia writes about voice control – page 20 to 21

The Sunshine Vitamin & Osteoporosis by member Vivien Holland – page 22

Letter from Sylvia Dymond – page 23 To Wheel or not to Wheel, that is the Question? by Ellen Riddle – page 23 to 24 Contact Information – page 24

Editorial by Hilary Hallam

As I return to the UK after an unexpected extended stay in Florida due to the delay in the work on my house I reflect on the difference between America and the UK in relation to the problems Polio Survivors are experiencing with the late effects. Obviously America is a huge country and facilities differ not only from State to State but also county to county so the comments are general.

In the UK we have a free National Health Service although we pay for this in advance in our taxes. We can go and see our General Practitioner usually within a few days. We tell them our symptoms and if necessary we are referred to a Consultant. This referral unless its an acute condition, can take months and sometimes over a year. When we get to that appointment we might see the Consultant or his Registrar. We are likely to be referred for tests and it can take weeks, sometimes a few months for the report to be done and sent back to the Consultant. Often a return appointment will not be sent till these results are to hand. If we need an operation or treatment then again we go on a waiting list. It is free but its very long and drawn out and stressful waiting and wondering what is wrong with you. For many of us there have then been further referrals to other Consultants. For some of us to get to an answer has taken 5, 10, 15 and more years from first reporting symptoms to finding out that the polio of our childhood needed to be taken into consideration.

In America, as you travel along some areas of largish towns you see sign after sign for health professionals (and attorneys). You need a doctor and pick up the local Yellow Pages and find that doctors and therapists are further broken down into which part of the body that they deal with. You ring for an appointment and you can be seen usually within a couple of weeks providing they will accept your insurance plan. Medicare, Medicaid, HMO’s, Blue Cross there are so many plans, so many terms, so many rules and conditions that even the medical administrators you meet say they have difficulty understanding it all. Employers often offer insurance plans but mostly these stop when you leave or retire. Who you can see and for how long relates directly to what you are able to afford in Insurance. Health professionals can decide which plans they will accept. A large local primary care surgery we rang explained that with no exception you pay them and then reclaim from your insurance plan and they did not accept Medicare which is the Social Security and Retirement Insurance Program. Medicare has set fees that they will pay for each procedure and they pay 80% of that figure. You have to find the 20% or beg who you want to see to accept the 80% as full payment. Often the amount they award for a procedure or item of medical equipment does not cover the cost so its no wonder that some health professionals will not accept it. E.g, Medicare will only pay about $39 towards that cost of shoes and they only pay for the shoe that fits the brace.

There are some excellent multidisciplinary PPS Clinics, specialists and therapists in most States. However there is still the problem that because the condition is most often not taught at medical schools that many health professionals are unaware of its existence, or ‘its not my field’. We receive between six and fifteen requests for help from the States each week from Polio Survivors who have just found the condition exists on the Internet. Most report that the doctors they have seen have not heard of the condition or know little about it and are requesting information on who they can be referred to. So the difference for many is the same, it all depends on whether there is a polio and PPS knowledgeable facility near to where you live and can you afford to go there.

We complain about the NHS (and often with justification where chronic neurological conditions are concerned) but we can usually register with our nearest surgery, we don’t have to check if they will accept our insurance plan. When we are ill we don’t have to decide eat or see the doctor. Each prescription item costs the same, we don’t have to ask it’s cost to see if we can afford it before we get it filled. Our main problem is ‘will we still be alive by the time we get to see a Consultant who is knowledgeable about polio and its late effects’.

Survey. Janice Eary would be grateful for return of these as soon as possible and thanks the now 45+ of you who have returned them. (American and Canadian members will have a copy of the survey with this issue). As I have said in nearly every issue of the newsletter, we need to hear from you, your stories, hints and tips, ideas for future issues. The newsletter is made up from items sent to me and of information that I feel from my daily contact with polio survivors, support group leaders and PPS specialists, that might be helpful to you in trying to manage your symptoms effectively. No two polio survivors are the same, but I often get a phone call or email telling me that something in our newsletter has been tried to great effect. Pen and Phone Pals – Members in your Area. Again I ask if you would like to be put in touch with members who live near to you then please contact Wendy not only to request this but also to give permission for your details to be passed on. We cannot divulge information without your permission. Those who have attended our AGM’s will agree that meeting other polio survivors and their families and being able to share stories has not only been very helpful but produced lots of rib aching laughter and there is no better medicine than laughter to relieve the stress of PPS.

Trillium trillium

my hope is in thee Easter Lily of my childhood free

Never gathered in glens of green but plucked in the “Little Woods” unseen (from tangled density I mean)

Near my home

where hearts once bled and Bleeding Hearts

from mossy bed to maturity grew instead

I gathered you on Easter Day remember how we used to say

Three

pure white petals

I could see an uncorrupted trinity

Beauty, transient as life a half-century ago the years and the trilliums

where did they go?

TRILLIUM

This Easter Poem was written by Polio Survivor LaVonne Shoneman in 1991 after a long illness and in gratitude for being alive and well. LaVonne has won many competitions with her poetry and I hope you enjoy this one that I selected from the choices she offered for this time of the year.

Retirement In A Trailer Park Thru The Eyes of a Child

After a spring break, a teacher asked her young pupils how they spent the holidays. One child wrote the following:

“We always used to spend the holidays with Grandma and Grandpa. They used to live here in a big brick house, but Grandpa got retarded and they moved to Arizona. Now they live in a place with a lot of other retarded people. They live in a tin box and have rocks painted green to look like grass. They ride around on big tricycles and wear name tags because they don’t know who they are anymore.

They go to a building called a wrecked center, but they must have got it fixed, because it is all right now. They play games and do exercises there, but they don’t do them very well. There is a swimming pool too, but they all jump up and down in it with their hats on. I guess they don’t know how to swim.

At their gate, there is a doll house with a little old man sitting in it. He watches all day so nobody can escape. Sometimes they sneak out. Then they go cruising in their golf carts. My Grandma used to bake cookies and stuff, but I guess she forgot how. Nobody there cooks, they just eat out. And they eat the same thing every night, `Early Birds’. Some of the people can’t get past the man in the doll house to go out. So the ones who do get out bring food back to the wrecked center and call it pot luck.

My Grandma says Grandpa’s worked all his life to earn his retardment and says I should work hard so I can be retarded some day too. When I earn my retardment I want to be the man in the doll house, then I will let people out so they can visit their grandchildren. Author Unknown.

Member Dr. Henry Carter.

I am sorry to inform you that my father, Dr Henry Carter, died on 3rd February. He had been unwell for some time and, following two operations, died peacefully with his family around him. Simon Carter.

Our condolences to Mrs. Carter, Simon and family.

THE LATE EFFECTS OF ME

Can they be distinguished from the Post-polio syndrome? Dr. E.G. Dowsett MBChB, Dip Bact.

Honorary Consultant Microbiologist Basildon and Thurrock Hospitals NHS Trust.

Originally a Presentation to the All Party Group of MPs on ME/PPS on 31st January 2001. This Lincolnshire Post-Polio Library Publication February 2001. http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html

INTRODUCTION:

Few people would dispute that ME (Myalgic encephalomyelitis), an illness which blights the hopes and aspirations of all sufferers, especially the young, is denied equal treatment in respect of diagnostic facilities, medical coverage and welfare provision. Comparable chronic and unpredictably disabling neurological conditions, for example Multiple Sclerosis, which was formerly ascribed to “hysteria” and similarly neglected, now receive government recognition, facilities within the NHS, and more generous research funding – though the potential cost of effective treatment can still arouse bitter debate.

WHAT IS ME?[1,2,3]

a. ONSET:

It is a syndrome (a group of linked symptoms) initiated by one or more of a related group of enteroviruses which circulate annually in the community in summer and autumn in temperate climates, but all the year round in tropical areas.

b. MINOR ILLNESS:

The majority of encounters with these viruses are asymptomatic but some subjects, more commonly teenagers and adults, suffer a seemingly trivial minor illness, usually described as a non specific summer ‘flu accompanied by gastrointestinal upset, sore throat and occasionally by generalised glandular enlargement.

c. SECONDARY PHASE:

The minor illness is self limiting in 90% of adults. However, some 5-10% of all age groups exposed, may progress to a more significant episode with severe headaches and vertigo, a stiff neck and back and generalised muscle pain, signifying that the central nervous system has now become involved with a possible progression to viral meningitis and encephalitis[3]. Clinical recovery at this stage is normally possible, but does not preclude further effects of the illness in later years. It has to he remembered that ME is a life-long disability where relapse is always possible.

d. FINAL STAGE[1,2]:

After a variable interval, a multi-system syndrome may develop, involving permanent damage to skeletal or cardiac muscle and to other “end organs” such as the liver, pancreas, endocrine glands and lymphoid tissues, signifying the further development of a lengthy chronic, mainly neurological condition with evidence of metabolic dysfunction in the brain stem. Yet, stabilisation, albeit at a low level, can still be achieved by appropriate management and support. The death rate of 10% occurs almost entirely from end-organ damage within this group (mainly from cardiac or pancreatic failure). It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.

WHAT ARE THE LATE EFFECTS OF ME?

Most doctors with substantial experience of examining these patients would agree that the outlook for any individual is unpredictable. Case records need to be kept up to date for prolonged periods because patients who have remained clinically stable over 40 years or more and have worked normally for most of their lives are still subject to significant late effects. These include: overwhelming fatigue both physical and mental; cognitive

disturbances; muscular and joint pain; muscular weakness and wasting; difficulty with breathing; episodes of hypothermia and low blood pressure; problems with swallowing and voice production as well as sudden attacks of breathlessness while sleeping. The similarities of these symptoms to those complained of by sufferers from the Post-polio syndrome, is striking and requires further explanation.

WHICH GROUP OF ME SUFFERERS ARE CHIEFLY AT RISK OF THE LATE EFFECTS?[4]

The majority of ME patients contract their illness in the 3rd and 4th decade (50%) with secondary peak at puberty (18%). The incidence at the extremes of age (below 10 years and above 50 years) has, until recently, been low (about 10% in each group). Epidemiological surveys made between 1988 and 1998, in 2 Essex hospital clinics dedicated to ME, indicate that the percentage of patients over 50 years of age attending with new illness has risen from 6% in 1988 to 16% in 1995 and 18% in 1998. Some patients indeed, present with paralysis. Others have a vague past history of illness in childhood. Some years of “weakness” or “growing pains”; recovery, but always poor at sport; possibly a stable work record for 25 years or more, followed by a decline in walking ability; unusual fatigue after simple tasks; problems with climbing stairs, dressing and with short term memory. The current age range of these patients is from 40-92 years, so it is not easy to dismiss their symptoms as due solely to “ageing”. Their social and medical problems are especially severe, as they share all the difficulties of access to remedial and support services complained of by other disabled people in the same age group. However, in the UK, there is almost nowhere to refer patients with suspected post-polio symptoms as the medical profession has largely forgotten or never experienced the many manifestations of that disease. Successful immunisation against only 3 polio viruses among some 69 enteroviruses currently in circulation is deemed to have solved all problems!

WHAT IS THE POST-POLIO SYNDROME?[5,6,7]

Poliomyelitis is an acute enteroviral infection with a wide range of clinical manifestations and multi-organ involvement (a fact which was frequently overlooked by physicians dealing with large numbers of dangerously paralysed patients, between 1940 and 1950). 95% of people who contract the infection remain symptom free or suffer only a trivial non-specific respiratory or gastrointestinal illness as in ME.

Some 5% of those contracting the minor illness develop muscle weakness or paralysis before more serious or fatal complications supervene. The diagnostic distinction between “paralytic” and “non-paralytic polio” was entirely arbitrary in the days of the big epidemics. In fact, the category of “non-paralytic polio” contained many patients with mild or temporary paralysis and with encephalitis, which occurs in patients reaching the later stages of this illness. Modern studies indicate that overt paralysis in these patients depends entirely on the percentage of spinal nerve cells destroyed. For damage to be visible as weakness or paralysis at least 50%-60% of the nerves controlling muscular action must be damaged or destroyed. Thus, patients with less damage who may only have had a minor illness, and some who were asymptomatic can still present many years later with a classic Post-polio syndrome.

Recent publication[6,8] of this information (originally derived from studies made in 1955) has resulted in a redefinition of the post-polio syndrome and will certainly include many patients currently seen in ME clinics.

SUGGESTED NEW CRITERIA FOR THE DIAGNOSIS AND ASSESSMENT OF THE POST-POLIO SYNDROME[7].

a. A history of remote paralytic or non-paralytic polio, or findings on history, physical examination or laboratory and other technical studies compatible with damage to the central nervous system in earlier life.

b. A period of recovery.

c. A period of stable functioning for 10-50 years.

d. New symptoms for which no other explanation can be found.

Many patients and research workers point out that the assessment of sufferers will now have to become more holistic, that standard electrical tests of muscle function (EMG) will have to be more widespread (and repeated), and that manual muscle testing must refer to repetitive activity and daily tasks rather than a single examination on the couch[16].

IS IT POSSIBLE THAT MANY PATIENTS DIAGNOSED AS HAVING ME ARE SUFFERERS FROM AN ILLNESS CLINICALLY IDENTICAL TO “NON-PARALYTIC” POLIO?[6,8]

Yes, undoubtedly! This is an important question with fundamental implications for further research into the diagnosis, treatment and prevention of both disabilities.

Modern research published currently in a dedicated supplement of the American Journal of Physical and Medical Rehabilitation by the Editor and 3 leading research teams[6,8], indicates that part of the current difficulty in obtaining a clear diagnosis of the post-polio syndrome lies in the error of dividing acute poliomyelitis into “paralytic”, “non-paralytic”, “abortive” and “sub clinical” categories. It has to be recognised that there is a wide range of nerve damage in every patient. The Post-polio syndrome may therefore include:

a. Patients whose nervous system damage was not clinically obvious at the time of diagnosis.

b. Those who had minimal paralysis for a short period and were misdiagnosed as non-paralytic polio.

c. Those patients suffering from infection due to non polio enteroviruses with potential to cause nervous system damage and the “Post polio” syndrome, equal to that of polio viruses e.g. Coxsackie viruses A9, A7; Coxsackie B viruses 1-6; ECHO virus 9; Enteroviruses 70, 71 – all of which have been implicated in outbreaks of ME or epidemics clinically identical to paralytic poliomyelitis.

d. Patients with symptoms clinically identical to the Post-polio syndrome whose nerve damage arises from some other cause, for example, local muscle problems due to metabolic dysfunction, the effects of persistent virus infection, immune reaction to fragments of viral genetic material etc.

It is essential that patients with clinical symptoms suggestive of Post-polio syndrome should be referred to a Physician to exclude other nervous diseases (e.g., Motor Neurone Disease), and especially those which are treatable.

IS IT NECESSARY TO DIFFERENTIATE BETWEEN THE LATE EFFECTS OF ME AND THE POSTPOLIO SYNDROME?[8,9,10]

Not really, even if it were useful or practicable to do so at present, as the two conditions are clinically identical and similar in respect of neuroanatomical, neuroendocrine, neuropsychological electroencephalographic and other techniques, including brain imaging and molecular biology, as indicated by a remarkable series of research papers published by Bruno and colleagues over the past 20 years.

WHAT IS THE EVIDENCE THAT THE LATE EFFECTS OF ME AND THE POST-POLIO SYNDROME CAN BE CAUSED BY ENTEROVIRUSES OTHER THAN POLIO VIRUSES 1-3?

a. [11] In 1948, the year in which polio viruses were first cultured, specimens from 2 children with clinical poliomyelitis, yielded a non-polio enterovirus, (eponymously called Coxsackie after the neighbourhood in which they lived). This finding opened a Pandora’s box of some 70 previously undiscovered enteroviruses of which 14 strains were later found to have neurogenic potential equal to that of polio viruses.

b. [12] From the late 1940s, studies in the USA indicated that outbreaks of major or minor enteroviral illness (e.g. Paralytic or non-paralytic and non specific “summer ‘flu”) could be caused by varying proportions of virulent and non virulent polio viruses combined with other neurogenic enteroviruses, for example in Akron and Cincinnati [Table 1], Ohio (1947) Delaware and Connecticut (1949).

c. [13] In the UK, an outbreak of poliomyelitis affecting an Edinburgh housing estate from August 1961-February 1962 (a period when polio immunisation with the Salk (injectable) vaccine had recently been introduced) provided evidence that a “mosaic” of enteroviruses, including Polio type 3, Coxsackie viruses B2 and B4, Echo viruses 5 and 15 could act in combination to enhance virulence in individual patients, to block the spread of polio virus type 3

and to interfere with vaccine efficiency. Each virus type appeared sequentially until the arrival of Echo virus 5 in November which ended the outbreak by the following February (as indicated by serial sampling of the local school sewer). It has to be remembered that a sudden change in the virulence and spread of enteroviruses in the 20th century has been due to alterations in human hygienic behaviour rather than to viral mutations.

TABLE 1. 1947 OUTBREAK OF SUMMER ‘FLU, CINCINNATI, USA [12]

HOW MAY SYMPTOMS OF THE LATE EFFECTS OF ME AND POLIO BE EXPLAINED?[9,10]

It has to be accepted that some degree of encephalitis has occurred in all these cases and that the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem (a nerve centre controlling all vital bodily functions which is always damaged). The most troublesome symptoms of both conditions are progressive muscle weakness, fatigue and pain, and the commonest cause of relapse over use of repaired nerve networks and an inappropriate response to physical or mental stress in combination with the increasing effect of normal aging.

FATIGUE:

This is almost always central and due to damage affecting the Reticular activating system (which keeps the brain awake and alert as well as maintaining some control over muscular activity). Fatigue is characteristically intermittent, but profound and incapacitating and related even to minor activity.

[14]MUSCLE WEAKNESS AND WASTING:

This may have a central cause (as above) or a local origin due to loss of motor units controlling individual muscles

DIAGNOSIS	CASE No	CSF Cell Count	Virulence of Polio Virus	3 Laboratory Tests for Coxsackie Virus (Non Polio Enterovirus)	Summary of Laboratory Findings.
Summer Flu	1	0	Polio HV	–	–	–	High virulence polio virus only
Summer Flu	2	40*	Non paralytic polio LV	–	–	–	Low virulence polio virus and infection of CSF
Summer Flu	3	3	“	+	+	+	Low virulence polio virus & coxsackie virus
Summer Flu	4	150*	“	+	+	+	Infection of CSF & low virulence polio virus & Coxsackie virus
Non Paralytic Polio	5	734*	Polio HV	–	–	–	Only high virulence polio virus & infections of CSF
Non Paralytic Polio	6	27	Polio HV	–	–	–	Only high virulence polio virus
Non Paralytic Polio	7	70*	–	–	–	–	Only Coxsackie virus & infection of CSF
Paralytic polio	8	107*	Polio HV	–	–	–	Only high virulence polio virus and infection of CSF
KEY * Raised cell count in cerebro-spinal fluid indicates infection in the central nervous system Polio HV – Polio type one, virulent.Polio LV – Possibly polio type two, low virulence (non paralytic) Coxsackie is a neurovirulent, non polio enterovirus

(including the breakdown of repair to these over time). Metabolic, immune or ongoing viral injury to muscle fibres, are other possibilities where infection persists.

PAIN:

This is a severe symptom which is difficult to treat and is usually due to dysfunction of the thalamus, an important sensory relay station in the brain stem. Failure to produce natural painkillers (e.g. endorphins and encephalins), may be an additional factor.

INAPPROPRIATE REACTION TO PHYSICAL OR MENTAL STRESS:

This also arises from injury to the brain stem which normally controls the production of cortisol (a steroid required for stress control) via the hypothalamus, pituitary and adrenal glands . In the absence of an efficient response, even minor stress can cause catastrophic collapse in these patients. NB. Because of the many and varied symptoms arising from encephalitic damage to the brain, all symptoms reported, however bizarre they may seem, must be taken as possible evidence of organic disease.

MANAGEMENT:

Despite promising reports from the USA of anti-enteroviral agents[18], and of Dopamine receptor agonists[9] (to correct some deficiencies in neurotransmission) no specific medical treatment is yet available in the UK and the main principles of management rely upon conservation of energy, reduction of stress, and simplification of manual tasks at home or at work. These objectives cannot possibly be achieved without financial and social support, aids to mobility, house conversions and suitable rehabilitation facilities. In the USA it is claimed that (with counselling, if necessary, for those who find such adjustments to life style difficult) 91% of patients will stabilise in view of the fact that, at this stage, the disability is only slowly progressive. Patients have to be cautious about drugs, especially those acting on the central nervous system including psycho-active preparations and alcohol. In general, these patients need less anaesthetic but higher doses of pain killers than usual and more time to convalesce from surgery. There are now many new options for muscle problems including modern orthoses and corrective surgery.

COMMENT.[15]

a. There has been little government interest or support for patients suffering from the late effects of ME or from the post-polio syndrome. It is generally expected that survivors of polio will gradually disappear because of successful immunisation of the UK population 40 years ago. However the fact that “Post-polio”, by any other name, can arise from currently circulating enteroviruses has not been taken into account. The Chief Medical Officer’s Working Party on ME (set up in 1999 and funded privately by the Linbury Trust) has made it clear that its remit is only with management, and that all discussion about the cause, epidemiology and social benefit requirements of these patients is ruled out. It seems that it will be difficult to advise on rational management in the absence of such vital information.

b. The potential size and cost of the problem. This is impossible to assess in the UK because no official epidemiological surveys have been made. However, increasing numbers of patient support groups and individual research workers have been making their own calculations. In the case of ME, prevalence appears to range from 300/100,000 to 500/100,000 in occupations at high risk of infection[2], but no information is yet available about the number likely to suffer late effects (except that it may have trebled in the last 10 years)[4].

The number likely to be affected by the post-polio syndrome has been calculated as between 200 -270/100,000 currently[7], but no account has been taken of survivors from non-paralytic polio which could easily double that figure. Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]

c. Some Immediate Steps that Could Be Taken[7,17,18,19,20]. These patients could be referred to NHS rehabilitation clinics and welfare facilities as for any other chronic neurological disease but physiotherapy must include exercise suitable for patients with some damaged muscle fibres

which have been overused while others are normal and liable to deconditioning[7]. Separate “ME” and “Post-polio Clinics” are more expensive and often inaccessible. We should be educating doctors and paramedics now about the very common and seriously disabling effects of neglect[7]. Rapid diagnostic tests for enteroviruses, anti-enteroviral drugs and possible vaccines are already in preparation here, or in use (in the USA) to deal with the tremendous burden of circulating enteroviral infections, (for example, leading to febrile respiratory infections, viral meningitis and myocarditis, let alone unnecessary admissions to hospital and inappropriate prescription of antibiotics in children)[17,18]. These methods could well be employed for the benefit of young people in the UK and to prevent the rising tide of ME in schools – the commonest cause of long term absence and subsequent educational deficit![19,20]

d. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously! [11,12,13]

Address for correspondence:

47 Drewsteignton, Shoeburyness, Essex SS3 8BA, United Kingdom.

REFERENCES.

1.RICHARDSON J. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Enteroviral – Mediated Organ Pathology. The Haworth Press Inc. New York, London Oxford. ISBN 0-7890-1127-1 (in press).

2.DOWSETT EG, RICHARDSON J. The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK – 1919- 1999. Evidence submitted to the All Party Parliamentary Group of MPs on ME 23.11.99.

3.Echo Viruses and Meningitis. Scottish Centre for Infection and Environmental Health, Weekly Report, 7.11.2000.

4.RAMSAY AM, DOWSETT EG. – Then and Now. An epidemiological introduction (in the Clinical and

Scientific LEVINE P.	Basis of Myalgic encephalomyelitis/Chronic Fatigue Syndrome. HYDE BM, GOLDSTEIN J, Eds): The Nightingale Research Foundation, Ottawa, Ontario, Canada, 1992 Chapter 7 : 81-84.
5.DALAKAS MC. Post-polio Syndrome 12 years later (in the Post-polio Syndrome – advances in the pathogenisis and treatment. DALAKAS MC, BARTFIELD H, KURLAND LT. Eds) Annals of the New York
Academy	of Sciences: 1995; 753: 11-18. [PubMed Abstract]

6.FALCONER M, BOLLENBACH E. Late Functional Loss in Nonparalytic Polio. American Journal of Physical Medicine and Rehabilitation. 2000; 79(1) 19-23. [PubMed Abstract]

7.Basic information leaflet for health professionals on Post-polio syndrome/late effects of polio. Lincolnshire Post-polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK. October 2000

8.JOHNSON EW: A Clarification of “nonparalytic” polio: 3 BRUNO RL : Paralytic vs. “Nonparalytic” Polio. Distinction Without a Difference?: 4-12. [PubMed Abstract] HALSTEAD LS, SILVER JK: Nonparalytic Polio and Postpolio Syndrome: 13-18. [PubMed Abstract] (see opus cit. reference 6)

9.BRUNO RL, SAPOLSKI R, ZIMMERMAN JR, FRICK NM. Pathophysiology of a Central Cause of Post-polio Fatigue. (in the Post-polio syndrome — advances in pathogenesis and treatment. DALAKAS MC, BARTFIELD H, KURLAND LT: eds.) Annals of the New York Academy of Sciences. 1995; 753 : 257-275. [Lincolnshire Library Full Text]

10.BRUNO RL, FRICK NM, CREANGE MA, ZIMMERMAN JR, LEWIS T. Polio Encephalitis and the Brain Generator Model of Post-Viral Fatigue syndromes. Journal of Chronic Fatigue Syndrome. 1996; 2 (2,3): 5-27. [Lincolnshire Library Full Text]

11.DALLDORF G, SICKLES GM, PLAGER H, GIFFORD R. A virus recovered from the faeces of “poliomyelitis” patients. Pathogenic for suckling mice. Journal of Experimental Medicine. 1949; 89: 567-582.

12.MELNICK JL, LEDINKO N, KAPLAN A, KRAFT E. Ohio Strains of a Virus Pathogenic for Infant Mice (Coxsackie Group). Simultaneous occurrence with poliomyelitis virus in patients with “summer grippe”. Journal of Experimental Medicine. 1950 : 91: 185-195.

13.SELWYN S, HOWITT LF. A Mosaic of Enteroviruses. Polio, Coxsackie and Echo infection in a group of families. The Lancet. 1962; 2 : 548-551.

14.LANE RJM, BARRETT MC, WOODROW D. Muscle Fibre Characteristics and Lactate Responses to Exercise in CFS. Journal of Neurology Neurosurgery and Psychiatry. 1998; 64: 362-367. [PubMed Abstract]

15.Letter from Parliamentary Under Secretary of State, Department of Health (Yvette Cooper) to Matthew Taylor MP 20.6.2000 re. Post-polio Syndrome in UK.

16.HALLAM H. Polio Survivors need holistic multidisciplinary assessment because the standard physical assessment is not adequate. LincPIN Newsletter June 19, 1999.

17.ROTBART H, MCCRACKEN GH, WHITELY RJ. et al. Clinical significance of enteroviruses in serious summer febrile illnesses of children. Paediatric infectious diseases. 1999; 18 : 869-74. [PubMed Abstract]

18.ROTBART HA, O’CONNELL JF, McKINLAY MA. Treatment of Human Enterovirus Infection, Antiviral Research. 1998; 38 : 1-14. [PubMed Abstract]

19.DOWSETT EG, COLBY J. Long Term Sickness Absence due to ME/CSF in UK Schools – an epidemiological study with medical and educational implications. Journal of Chronic Fatigue Syndrome 1997; 3 (2) : 29- 42.

20.RANGEL L, GARALDA ME, LEVIN M, LEVIN M, ROBERTS H. The course of severe chronic fatigue in childhood. Journal of the Royal Society of Medicine. 2000; 93 :129-134. [PubMed Abstract]

The WHO and who?

Telephone / Fax +27 (0)39 973 2441 Cellphone +27 (0)82 928 0690

URL <http://www.sco.eastcoast.co.za/support/> E-mail <postpolio@scottburgh.co.za>

Reading the claims by the World Health Organization makes me very nervous. Who is going to help them? There in an incredible volume of work entailed in ensuring the planet is polio free by the year 2000.

People inundate me with URL’s advising that polio is going to be eradicated by the year 2002. I receive gleeful e-mails rejoicing at the fact that South Africa, Africa, India and in fact the whole world is going to be free from polio by that incredible year 2002.

Lets look at some facts. You never hear the wild life societies or game reserve officials telling you that they’re going to eradicate TB in buffalo or any such comment relating to an animal, because they know the hard work involved in tagging the affected lions, buffalo or whichever animal it is. These animals are monitored consistently. Records are kept and the health and the progress of these animals are scrupulously, studied and kept on file.

To successfully eradicate polio in a third world country at all let alone by the year 2002 you would have to do the following:-

❖ Eradicate poverty.

❖ Continually educate parents regarding the need for polio vaccinations and ensure that the rural areas are reached.

❖ Plan a successful and ongoing education campaign for the illiterate.

❖ Do an aerial view photograph of all the areas where you intend doing inoculations.

My face in the mirror, Isn’t wrinkled or drawn, My house isn’t dirty, The cobwebs are gone. My garden looks lovely, And so does my lawn, I think I might never Put my glasses back on.

Sent by Jo Kelly <kelly10@aol.com>. While making rounds, a doctor points out an X-ray

to a group of medical students.

“As you can see,” she says,

“the patient limps because of lost muscles due to Polio. His left fibula and tibia are radically arched.

Michael, what would you do in a case like this?”

“Well,” ponders the student, “I suppose I’d limp too.”

Sent by Marsha in Texas <marsha@CCMS.NET>

❖ Visit each home indicated in the aerial photograph and go to the village and note each child living in these homes.

❖ Confirm whether or not any of the children are HIV positive and/or have full-blown Aids.

❖ Check also for children suffering from malnutrition.

❖ Check constantly for missing homes as a result of ethnic fighting or war.

❖ Check constantly for new homes that have been built in the various villages in order that the children from these homes can be added to the existing aerial photograph of the village.

❖ Confirm whether or not there are any new cases amongst the children in the villages of HIV/Aids: Due to the constant raping of women and children this is a very real problem.

❖ You cannot possibly inoculate any children who are HIV positive and/or have full blown Aids. The manufacturers of the vaccine specify that you do not inoculate anyone with immune systems problems.

❖ All immune system diseases in children, including malnutrition, are not the conditions under which Albert Sabin would ever have done a clinical trial let alone give carte blanche approval for the “live” vaccination to be done on such children. If you go ahead and vaccinate any child who has an immune system problem or suffers from malnutrition you are guilty of putting this child at risk of becoming a polio victim.

❖ You would have to note the record cards of each child, i.e. their first vaccination, second, third, etc. In South Africa a newborn baby receives a “live” polio drop within the first 24 hours of its life. (This is not possible currently if, due to economics, a child is born in a hut in a rural area.)

❖ The fact that South Africa “appears” not to have polio cases is because the Ministry of Health cannot give you records from as far back as 1989. I, among others, have sought true figures on numerous occasions.

❖ The residents of the various villages need to know in advance that you are going to be entering their villages, towns, etc. to avoid suspicion and superstition.

❖ Take staff with you who know the chiefs of the various villages in the rural area and educate them on keeping records of who has been vaccinated, needs to be vaccinated and who has been raped and/or who is suspected of being HIV positive or having full blown Aids.

❖ Make your records open to the public to ensure that proper information is available to all interested members of the public and the government responsible for health records.

❖ Always inform parents that their children are being vaccinated with the ‘live’ virus so that they can be constantly aware when changing nappies or finding sores, and, if they themselves have open wounds on their hands are provided with the means to be protected from the exposure of the ‘live’ virus which can be found in the faeces.

❖ Be cautious before inoculating a child: Be responsible enough to bear in mind that because the ‘live’ virus is the only cost-effective way to inoculate the masses, and that a child with an open wound could effectively become another polio statistic.

❖ Do not ever overlook the health of the children and final eradication of polio in a quest to be able to show the world that polio has been eradicated.

❖ Every single person living in an area where new and dangerous strains of Tuberculosis and Malaria have surfaced, and, where Aids is wiping out whole generations, are only too aware that the false impression of the eradication of polio will end up being equally as dangerous as the aforementioned new strains of old diseases and/or viruses.

The ‘live’ vaccine is still used in England, South Africa and other third world countries because it is more cost effective. Israel currently uses both forms of the virus. American legislation has been passed to rule out the use of the ‘live’ virus. There are those who still care about adhering to the manufacturer’s instructions when vaccinating children against polio and of course there are those who don’t.

We South Africans live in a country where incidences of polio are no longer recorded and neither is the Health Department enforcing the fact that it is a notifiable disease. If this country cannot afford the required HIV/Aids treatment, how can we possibly expect polio and the eradication of same to be treated any differently?

The stark reality is that there is no money for the correct vaccine procedures.

Recently I was approached by a Namibian publishing house to assist them as they had been contracted to print a booklet, at the request of the Namibian government on infectious diseases, and, when the representative from the publishing house took the book for verification and final approval the health department instructed them to remove the section on polio because the World Health Organization had

advised that polio had been eradicated from the face of the earth. False information can ruin the lives of innocent people.

Whether or not people fail to vaccinate under the correct conditions and/or circumstances is of vital importance to the inhabitants of the planet. In fact, unless the rules of and problems of using the ‘live’ virus correctly are strictly adhered we have no hope whatsoever of ever eradicating polio from the face of the earth.

Don’t be taken in by propaganda. Read up on polio and become an informed parent, teacher, nurse, doctor or counsellor. It is to this end that I am humbled to share with you the following true story sent to me by a South African living in England. This family is a victim of the ignorance and lack of control of the ‘live’ vaccine.

“I am a South African who with my English wife and three young children moved to the United Kingdom in July 1997. In November 1997 our fourth child was born in the UK. He was well and healthy and all was fine. He was breastfed. Shortly after his birth he developed a perennial abscess on his left buttock. This cleared after a few days and then he developed a second abscess on his right buttock. At 8 weeks he was taken for his vaccinations and the abscess was shown to the health visitor, the nurse who was to do the vaccines and then she called a doctor. He looked at the abscess, squeezed it and took a swab for analysis and prescribed an antibiotic. We were told, when questioning if the vaccines should be given, that it would be fine as the abscess was one end and the vaccines were the other. Four days later the abscess had become so enlarged and uncomfortable that it was decided to lance it and drain it. The wound was then pack as best as it could be but each time he had a bowel movement the wound was filled with his stools.

A week later he developed a high fever and became irritable. He was diagnosed as having possible meningitis and hospitalized. Two days later the paralysis set in and all movement was lost. His breathing was maintained although it was very weak. His sucking was also only just maintained.

Even his voice was lost.

It is now two years later and he remains severely paralyzed. He cannot sit up and can only grip with his right hand. His shoulder muscles are very weak and he has very little and erratic movement in his right leg. His head control is good and he is a very bright little chap but physically he is severely handicapped. He has a special seating chair and a prone standing frame to enable him to be stood upright to assist in his bodily functions.

I hope our story will help prevent other children from having their lives affected by the vaccine.

The big questions are why did they not know this would happen and why was the vaccine not postponed? Why is the live virus used when the dead one is proven to be just as effective.”?

In third world countries like South Africa the ‘live’ virus is cheaper which enables more people to be reached and vaccinated. You cannot possibly ignore the economics of using Sabin’s vaccine: Neither can you ignore the necessity to use it wisely and properly.

NEWSBITES – a service on our WebSite of Polio Related News Items from around the World. Here is just one of the recent entries. Subscribe to What’s New Updates to receive email notification.

©NEW YORK TIMES ON THE WEB – MARCH 29th 2001 Filed at 4.00p.m. Eastern Time. WHO says Polio Strain Eradicated.

##ATLANTA (AP) — One of three strains of polio has apparently been wiped out — a milestone in the global effort to eradicate the paralyzing disease.

The World Health Organization said Thursday that the global network of laboratories that tracks the disease reported no new cases of Type 2 polio in 2000. The last recorded cases were in India in 1999.

The Americas were declared polio-free in 1994, and the disease has been eliminated in Europe. Still, more than 2,800 cases were confirmed last year in Southeast Asia, Africa and the Mediterranean, where war, poverty and other problems have hurt efforts to vaccinate children.

Continuing report on

Florida East Coast Post-Polio Support Group Late Effects of Polio – Overview 2000

December 8th – 10th 2000 Daytona Beach, Florida.

The Family Culture and Relationship with Disability.

by Margaret Backman, PhD. Clinical Psychologist.

Family members have fears and frustrations.

• They cannot change the situation.

• They are seeing the other doing too much being in

pain.

• They can’t do what they would like to be doing

themselves.

• They are also experiencing the losses; what we

used to do together and loss of control.

We, the person with the disabilities are

• Afraid of what the future holds

• Afraid physically that our needs will place such

demands on family and friends that they will grow

weary and resentful and withdraw. We will be a

burden.

• We fear being judged by our appearance.

How family members are sometimes experienced;

• Overprotective

• Taking over (helping us too much)

• Paternalistic (Too much empathy)

• Avoid talking about issues

• Ignore

• Forget

• Anger

Message to the Other.

Person with Disability. Family Member

When I say I am tired Consider me too.

I mean it, Do not over estimate what I can do.

Co-operate when I need something, sometimes I need to put myself first.

When you can see that Iam busy, give me time tofinish what I am doing.

Complement me once in a while.

Thank me once in a while.

Significant Others Getting a Balance in your Life.

1. Plan for possible changes. Confront fears

and develop a ‘just in case’ attitude.

2. Be flexible and adaptable. Find new interests

compatible with your new life style as needed.

3. Take time for yourself.

4. Have outside interests.

5. Develop a support network for socialising and

for having more help.

6. Communicate – talk to each other.

7. Do what you can to ‘stay healthy physically

and mentally’.

8. Consider counselling or psychotherapy to help you.

– come to a comfortable stage of acceptance.

– integrate new and changing roles.

– improve communication, i.e. learn how to

express feels and needs.

– reduce chaos in the family or with friends

– learn how to deal with others’ fears and

personalities and needs.

Margaret E. Backman PhD. Columbia University and

New York University Medical Centre

has written a book called:

The Psychology of the Physically Ill Patient. A Clinician’s Guide.

published by Plenum Publishing Corporation. Priced at $59.00 at the time of the Conference.

Mental health professionals are becoming increasingly involved with medically ill patients, particularly in helping patients to cope with the psychological repercussions of severe chronic illness. ‘The pendulum has begun to swing.. to the interrelationship of body and mind,’ says author Margaret Backman. ‘Quality of life is again becoming a critical consideration to treatment’.

Drawing on her own clinical experiences as well as studies of psychological factors in medical illness, Bachman examines the psychological and social worlds of physical ill patients. She discusses understanding the physically ill patient, therapy, practical, and philosophical considerations of the therapist, empirical and theoretical approaches to psychological interventions, and case studies of patients with specific illnesses. Useful as a reference or resource book for the independent practitioners as well as institutions.

Stress Management for the Mind, Body and Spirit:

the SHARED method

reprinted slightly modified with permission Kathryn P. Fraser, PhD.

Halifax Medical Center Family Practice Residency Program.

P.O. Box 2830 Daytona Beach, FL 32120-2830

(904) 254 4171

What is Stress?

Demands on the mind, body and spirit are greater than you can cope with. You might feel overwhelmed, exhausted, confused, depressed, irritable, and like giving up. Previous coping mechanisms might no longer be working. You might turn to things that are mentally, physically, and spiritually unhealthy for you. You have lost your ability to comfort yourself.

Some stress signals are:-

• Irritation

• Frustration

• Hostility

• Restlessness

• Sleep problems

• Lack of concentration

• Emotional outbursts

• Aggressive behavior

• Biting nails

• Clenching jaw

• Grinding teeth

• Back Pain

• Stomach problems

• Muscles aches

• Change in sexual functioning.

and Physical Symptoms

• Ulcers,

• Irritable bowel syndrome

• Migraine Headaches

• Asthma

• Allergies

• Skin disorders (excema, acne, psoriasis)

• Poor immune system.

Stress Management: the SHARED Method.

SHARED is an acronym that provides an easy way for us to remember some of the major areas of our lives which can be used to promote good health and stress management. It stands for Sleep, Humour, Affirmations, Recreation and Relaxation, Exercise and Diet. Note the many different ways you can bring stress relief, peace and harmony into your life and ask yourself.: Have I ‘SHARED’ LATELY?????

SLEEP

Many people are sleep deprived without even knowing it. Everyone has a different sleep requirement, the average being seven to eight hours per night. If you feel chronically stressed or fatigued, you may not be getting enough sleep.

If you have difficulty sleeping, here are some tips:

1 Go to bed at the same time every night.

2 Don’t do anything else in bed but sleep so

your body gets conditioned.

3 Have a relaxing routine, e.g. read a little or

have a soothing drink, that you go through

each night before going to bed.

4 Listen to a calming relaxation tape 15 to 30

minutes before your bedtime.

5 Do something energetic in the early evening to

help you feel more tired by bedtime.

6 Take a warm bath shortly before going to bed

to relax yourself.

HUMOR

There’s nothing quite like a good belly laugh to get you going sometimes. Humor is a great stress reliever mentally because it helps us to cope, gives us a sense of control, and helps us to keep a balanced perspective. One of the most compassionate things we can do for ourselves is to take our imperfections less seriously by finding humor in the situation. Some doctors believe that laughter also has the physical benefits of giving your cardiovascular and respiratory systems a healthy little workout.

Unfortunately, not all of us can laugh at just any situation. Embarrassment, anger, worry, pain and fear of rejection are all emotions that can limit humorous thoughts and feelings. Just remember that wherever you are, whatever you are doing, it is always okay to be good to yourself. You may not be able to laugh out loud right away, but you can certainly save up some inner smiles for future use. Finding some sparks of humor in the most desperate of times can sometimes give you the boost you need to make it through. Do be kind to others, as well as yourself. And don’t use humor to avoid your other emotions, but rather to relieve them.

AFFIRMATIONS/POSITIVE SELFSTATEMENTS.

Whether out loud, or in our thoughts, we all talk to ourselves all the time. We are always commenting on the things that go on in our lives, and believe it or not this has a lot to do with the way we feel about things. Without realizing it, we tend to

‘catastrophize’, ‘awfulize’, and ‘shoulda, woulda, coulda’ ourselves into a very stressed out state of mind. Using positive self-statements is a way to counteract those negative self-statements. Positive self-talk is also a way to build up confidence and boost our spirits when we need it. In the long run, you can really change the way you feel about yourself and help yourself become more assertive and better at achieving your goals.

Take an inventory of your self-statements and try to figure out where the negative ones come from. Next, challenge yourself as to whether they are true or not, or if you might just be being too hard on yourself. Then try to come up with a positive statement that counteracts the negative statement. Position self-statements should be written in a positive rather than negative way (i.e. I will, rather than I will not) should be written in the present tense, and should have an ‘I’ statement in there. Try using about three of these every morning when you are facing a difficult task, and see how changing your thoughts can change your feelings.

[Source: The Anxiety and Phobia Workshop

• I respect and believe in myself apart from

others’ opinions.

• I love and accept myself the way I am.

• I accept the natural ups and downs of life.

• Circumstances are what they are, but I can

choose my attitude towards them.

• Life has its challenges and its satisfactions – I

enjoy the adventure of life. Every challenge

that comes along is an opportunity to learn and

grow.

• I am setting the priorities and making time for

what is important.]

RECREATION/RELAXATION.

Recreation and relaxation are about adding leisure time to your life. Leisure comes from the Latin word licere which means giving ‘permission’. Having leisure time is a way of giving ourselves permission to enjoy life. It’s very easy to get caught up in our day-to-day tasks of working and doing for other people and forget about our own basic needs. It’s important to pay attention to when our bodies and minds need a break. If you’re allowed to take breaks during the day, take them. You don’t even have to leave your work area. A few minutes of silent reflection and meditation, listening to peaceful music, or pleasure reading can reenergize you and help you make it through the day.

Make times in your week for activities that are enjoyable to you. Leisure activities can be some form of recreations, socializing, entertainment or hobbies. Relaxation activities like yoga, meditation, aromatherapy and beach walking {or good path rolling in a scenic place] allow you to unwind and let go of the stresses and strains in your life. Creative outlets like music, painting and pottery can give you the chance to express yourself in ways that are very personal and private for you. All of these activities are good for the mind, heart and soul. Check your local recreation centers and community college for classes or workshops in your areas of interests.

EXERCISE

Some of the stress-reducing benefits of exercise include:

• reducing muscle tension

• increasing endorphins or ‘pleasure’ hormones

• improving circulation and lowering blood

pressure

• clearing the mind or worrying thoughts

• providing a balance to our other activities and

responsibilities.

Gentle exercise that includes trying to maintain a good range of movement and prevent your joints stiffening and adhesions forming is good for your general health, mind and wellbeing. No two polio survivors are the same and therefore there can be no printed pattern of what you should do. You will need to work with your doctor and a polio and PPS knowledgeable physiotherapist to build a plan that works for you. Repeating and/or sustaining any exercise action should be to your level and should stop before pain or fatigue are reached. Listen to your body and working with your therapist be guided by what it tells you.

DIET

A major anxiety-producer in our diets is caffeine. Most people associate excess caffeine intake with coffee, but other common culprits are also chocolate, cola and tea. These may feel like relaxers but they act more like stimulants in our bodies which makes us want more once they’ve gotten out of our system. Gradual reduction and/or elimination of caffeinated products can do a world of good for the nervous system by reducing jitteriness and allowing you to sleep better. Try to develop eating habits that are enjoyable to you. General advice for a healthy diet includes eating lots of fresh fruits and vegetables, whole grains, and other high fibre foods. Our bodies can get

bogged down with digesting highly processed foods, junk food and high fat food. If you’re a meat lover, you don’t have to eliminate it totally but try and stick to the leaner cuts. Make meal times a quiet or social time for you, and allow yourself plenty of time for digestion before moving on to your next activity.

Self-Nurturing Activities.

The following list has been very helpful to many of my clients who suffer from anxiety disorders or depression. By performing at least one or two items from the list every day, or anything else you find pleasurable, you will grow in the important skill of becoming a good parent to yourself. You have nothing to lose but your sense of insecurity and inadequacy – nothing to gain except increased self esteem,

[Source: The Anxiety and Phobia Workshop]

1 Take a warm bath.

2 Have breakfast in bed

3 Take a sauna

4 Get a massage

5 Buy yourself a rose

6 Take a bubble bath

7 Go to a pet store and play with the animals

8 Walk or wheel on a scenic path in a park

9 Visit a zoo

10 Have a manicure or pedicure

11 Stop and smell some flowers

12 Wake up early and watch the sunrise

13 Watch the sunset

14 Relax with a good book and/or soothing

music

15 Go rent a funny video

16 Play your favorite music and dance to it by

yourself (shut your eyes and pretend if you

are physically unable to do it)

17 Go to bed early

18 Sleep outside under the stars

19 Take a ‘mental health day off’ from work

20 Fix a special dinner just for yourself and eat

by candlelight

21 Go for a walk or wheel

22 Call a good friend – or several good friends

23 Go out to a fine restaurant just with yourself

24 Go to the beach

25 Take a scenic drive

26 Meditate

27 Buy new clothes

28 Browse in a book or record store for as long

as you want

29 Buy yourself a cuddly stuffed animal and play

with it

30 Write yourself a love letter and mail it

31 Ask a special person to nurture you (feed,

cuddle, and/or read to you)

32 Buy yourself something special that you can

afford

33 Go see a good film or show

34 Go to the park and feed the ducks, swing on

the swings, and so on

35 Visit a museum or another interesting place

36 Give yourself more time than you need to

accomplish whatever you’re doing (let

yourself dawdle)

37 Work on your favorite puzzle or puzzlebook

38 Go into a hot tub or jacuzzi

39 Record an affirmation tape

40 Write out an ideal scenario concerning a goal,

then visualise it

41 Read an inspirational book

42 Write a letter to an old friend

43 Bake or cook something special

44 Go window shopping

45 Buy a meditation tape

46 Listen to a positive, motivational tape

47 Write in a special diary about your

accomplishements

48 Apply fragrant lotion all over your body

How do you handle adversity?

A daughter complained to her father about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose. Her father, a chef, took her to the kitchen. He filled three pots with water and placed each on a high fire. Soon the pots came to a boil. In one he placed carrots, in the second he placed eggs, and the last he placed ground coffee beans.

He let them sit and boil, without saying a word. The daughter sucked her teeth and impatiently waited, wondering what he was doing. In about twenty minutes he turned off the burners.

He fished the carrots out and placed them in a bowl. He pulled the eggs out and placed them a bowl. Then he ladled the coffee out and placed it in a bowl. Turning to her he asked. “Darling, what do you see.” “Carrots, eggs, and coffee,” she replied.

He brought her closer and asked her to feel the carrots. She did and noted that they were soft. He then asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, he asked her to sip the coffee. She smiled as she tasted its rich aroma. She humbly asked. “What does it mean Father?”

He explained that each of them had faced the same adversity, boiling water, but each reacted differently.

The carrot went in strong, hard, and unrelenting. But after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior. But after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you,” he asked his daughter. “When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?”

How about you? Are you the carrot that seems hard, but with pain and adversity do you wilt and become soft and lose your strength? Are you the egg, which starts off with a malleable heart? Were you a fluid spirit, but after a death, a break-up, a divorce, or a layoff have you become hardened and stiff. Your shell looks the same, but are you bitter and tough with a stiff spirit and heart? Or are you like the coffee bean? The bean changes the hot water, the thing that is bringing the pain, to its peak flavor reaches 212 degrees Fahrenheit. When the water gets the hottest, it just tastes better. If you are like the bean, when things are at their worst, you get better and make things better around you.

Are you a carrot, an egg, or a coffee bean?

Tips For Living With Dysphagia by Polio Survivor Ellen Riddle <Lonellen@harborside.com> Lincoln City, Oregon, USA

I am not a doctor or nurse. If you think you may have Dysphagia and haven’t had it checked out ask to visit a specialist who can administer the barium swallow test; referred to as a Video Fluoroscopy.

Do you find food going down the wrong pipe more than the rare occasion? After eating do you have a slightly husky voice? Are there times that you have to swallow a number of times just to get one mouthful all the way down? Is swallowing getting to be a worrisome concern for you? Do you find yourself clearing your throat a lot, even when you don’t have a cold or cough? Is gargling a problem for you? Is it difficult to create a good wad of spit?

If so then you may have a problem the medical community refers to as Dysphagia. It has various causes. One is neuromuscular conditions, such as Polio and PPS.

The simple explanation of this condition is as follows: when one swallows there is frequently a tiny “pre-swallow”. A small bit of food or liquid simply slides on past the back of the tongue just as the person begins to swallow.

In most cases only one in about a hundred of these pre-swallows will end up with the pre-swallow going down the windpipe. This is the case even when the pre-swallow occurs consistently with every swallow.

I found out I had this condition in 1992 when I went to a PPS Clinic in Texas. Among my complaints then was an increase in my problem with swallowing.

I was sent to the speech therapist for a “Fluoroscopy”. Once I was seated in a comfortable chair, much like a dentists chair, an x-ray type machine connected to a TV was focused on my head. The therapist came in and feed me spoonfuls of barium-laced foods. This included everything from water to a bit of meat with at least

one sample of every possible texture of food. The result was that I have Dysphagia on both sides of my throat. For me this pre-swallow occurs with every single swallow regardless of the consistency of the food I’m eating.

She explained that this is one of the possible side effects of Bulbar Polio. She went on to explain that I could have had this problem since my first bout with polio, that it could be getting worse with PPS, or it could be relatively new due mainly to PPS.

The important thing was to learn how to live comfortably with this problem, eliminating as much as possible the real dangers of choking and aspiration of liquid and food into the lungs which can present another whole host of problems including pneumonia.

I knew my weak tongue was a culprit here as it’s been weak since my original polio. There are just certain ways my tongue can’t move. What I never realized is that different jaw and mouth muscles either were or are now also affected. I found out that I don’t chew like other folks. I discovered that instead of an up and down chewing (normal) I chew more like a cow does (the therapist’s description) with more of a side-to-side motion. I simply don’t have the muscles for the normal chew. This adds to the pre-swallow problem.

I have learned some things, which do help to prevent the pre-swallow from ending up in a choke.

1. Take very small bites and drinks. It’s still important to chew well, but the longer the food/liquid is in the mouth the more of it can slip past in the pre-swallow.

2. Be sure to avoid tipping your head back when drinking as this actually opens the windpipe more and increases the chance of choking. Using a straw, glass or cup and avoiding drinking out of a can or bottle help this.

3. Tilt your head down slightly towards your neck. This helps close the windpipe.

4. If you are over-tired, emotionally upset or excited try not to eat till you are rested and/or calmed down.

So far I’ve not had a serious choking incident. Instead I’ve had some that were embarrassing. I hope to keep it this way, but know that like with other PPS related problems no one really knows what the future may hold for this problem. So, on my own I’ve added a few more things that I try to do to keep the muscle tone that I do still have in my neck and jaws and also to apply the “rest and preserve” philosophy to this problem.

5. Do the stretching exercises designed to help prevent wrinkles and sagging of the face and neck.

6..	Try to give your neck adequate support and rest. For example:

(a).	When resting in a recliner or comfy chair make sure to place something behind your

neck to give it extra support. I’ve found the bone shaped pillows work for me.

(b).	When	taking	rest	breaks instead	lay of	down sitting,
whenever	possible
making sure your neck and head are as
relaxed as can be.
(c)	If you can get to a massage therapist make sure he/she works gently on your
neck and	upper back to	help these
muscles fully relax.
(d)	If you can’t do (c). then get yourself a

small massager and use it on your neck muscles.

7. If you are just looking into getting a power chair or scooter talk over your need for neck and head support and include this when ordering.

8. Whenever your head starts feeling “too big” for your neck to hold up or you find yourself leaning your head to one side or the other, or resting it on your hand these are clues that’s its time to take a rest.

I have benefited greatly from using your WebSite and hope that the above tips are helpful to you in your quest for answers to your problems. Gentle exercise and massage, pacing and resting and the above have helped me. Please remember that no two polio survivors are identical and that it is important that you are properly assessed and advised by polio and post polio specialists.

Roger Brown from Melbourne Australia tell us his story and following that permission to print his answer to a question about trouble with voice control when singing.

I should first explain that my polio affected my upper left arm – mostly (but not entirely) from the elbow up. Th upper part of the arm has virtually no useful muscle left, The lower forearm is about 75% of normal and my wrist and hand strength and movement are normal.

There was quite a bit or initial concern that there would be some effect on my breathing capability and I imagine that I am in fact quite lucky that that

turned out not to be the case. Part of the concern was that as a young child I was VERY suspect to bronchitis and in that context I was taught intercostal breathing,

I didn’t really understand its significance at that time but in my later years as an organist/choir trainer that knowledge became much more useful.

My parents were like many of their generation – anxious for all our family to learn music and I think would always have been evident that I was musical. I can’t remember not being able to read music or sight sing. My early piano exam results were however a bit mixed – comments like “candidate is musical but must overcome an undisciplined left hand” were pretty standard. Quite rightly, you don’t tell examiners about things like polio and if you did, they couldn’t “make allowances”. You can either play a musical instrument or you can’t – end of story.

But later things went better as I got older and stronger and I studied piano right through my school days. Inevitably there was the Sunday School piano and church organ – the latter an old pedal harmonium – we lived in the country and I never even SAW a real pipe organ until my early 20’s when I moved to the city.

When I did get the chance though, I soon found that the organ was a much better instrument for me than the piano simply because the instrument has a pedal keyboard that takes quite a bit of the physical pressure off the left hand. So I found that I was able to get right up to professional standard on the organ. I had lessons with a top teacher and did some good professional diploma exams – I’m very proud of that FTCL (Fellowship of Trinity College London) because of the extra effort involved. And I’m even more pleased because a friend of mine happened to visit the examiner on a trip to the UK (they send an examiner out from England to do these diploma exams) and mentioned my polio. The examiner was apparently quite unaware of anything of the sort and was extremely surprised.

Of course the effort in all this did tell and significant PPS related weakening started to emerge. As I detail in my little WebSite piece, I had to find a way, if I wished to continue playing, to reduce the strain on my arm. This I was able to do with the use of a flail arm splint – a method which had been very successful in allowing me to continue and even to improve some aspects of my playing due to the reduction in physical strain. I put the little webpage piece on my site (after a long period of thinking it better to keep this aspect of my life fairly much to myself – that has been the way I was brought up) in the hope that maybe it might give someone else some encouragement. You can see more about that on http:// rogerbrown.tripod.com

Now if you are going to be a church organist you will work with choirs and for many years I have attended summer schools of the Royal School of Church Music here in Australia. I even attended a 6 weeks summer school for overseas students in England years ago – and one of my best memories is playing a service postlude (one of my big showpieces) at Westminster Abbey.

Now you will understand from the above that I have now been a church organist and choirtrainer for many years. Part of what EVERY choirtrainer needs to know and a subject often covered at summer schools is all about vocal technique – how to teach choristers to sing correctly. And it all comes back to the same technique of intercostal breathing that I learned as a youngster in polio clinics all those years ago.

And in fact these are the same techniques that are used by speech therapists to help people in any occupation where vocal stress is a problem. Many of my relatives are teachers (a profession notorious for vocal stress) and what they are taught to cope with those demands are the same principles as singers use viz.

– proper breathing technique

– use of the muscles at the base of the stomach and lower back (diaphragm) to control the airflow

– production of volume purely through air volume and with NO stress of throat or neck muscles

– use of the chest and nasal mask to resonate and amplify the sound

The email I responded to concerned a lady who stated that when she sang a couple of hymn verses or otherwise put her voice under stress, she suffered later loss of voice. This seemed to suggest that her vocal technique may have been incorrect – possibly involving unnecessary stress – but it may flow from posture problems arising from PPS weakness. I certainly don’t maintain that any of the above suggestions (or the reply to the email following this) will prevent problems from PPS people who have muscular weakness or paralysis – especially of it involves the vocal cords.

But I would suggest that any one who has a problem in this area might consider whether use of correct vocal technique would help them make the best use of what they have.

The question was ‘I find if I sing a couple of hymns

I lose my voice for the rest of the day. I’ve given up hollering at basketball matches too.’

Whatever the primary cause of your vocal problems may be I would certainly be looking hard at matters of vocal technique. If you really understand some basic things about HOW you should be using your voice you can minimize strain and reduce any adverse affects of sustained use.

The sort of things I would look at are:

Breathing. Most people breathe inefficiently using only the upper part of the chest. They then create volume by straining from the throat which creates unwanted tension and can cause nodules on the vocal cords. People in occupations which involve sustained vocal use AND stress, are very suspect to this. Teachers often suffer.

If you had polio with any effect on the upper body you might easily have been shown the correct method of intercostal breathing. Very simply it is to raise the chest and tuck in the stomach BEFORE breathing in, then breathe in. This will fill the lower portion of the chest – creating what I always call the pregnant lady/ beer gut effects (according to gender).

One famous English cathedral musician had it pretty right. He would tell his boys to “make like Tarzan” – then breathe in. That automatically got them breathing in the correct manner,

Then you control the release of breath (when you sing, holler (as you call it, or speak) by using the stomach muscles. You should also have the sense of drawing in the muscles of the small of your back as you release air.

When you sing or speak loudly, you should have the sense that the ONLY thing creating the increase in volume is that more air is being pushed

through the vocal cords – nothing else – no straining in the throat or neck, In fact if you place your hand on your throat (at just below the Adams apple) there should NEVER be the slightest tension whether you sing or speak loudly or softly

This gives you a way of providing volume without strain and simply paying attention to this aspect will greatly reduce vocal stress.

‘As my job involves telephone conversations where I do 70% of the talking, I think it’s time to change it.’

So it may simply be a matter of a few bad (though common) habits causing vocal stress. Or indeed PPS may be a factor. But being sure you are doing everything you can to avoid vocal stress is certainly something you should look into.

Perhaps the music director or choir leader at your church may have the skills to help you address this. Since your voice is your job it is important and I think its a great pity your medical people have not been a bit more helpful. A good vocal specialist should have been able to establish at least some remedial measures.

rbrown7@bigpond.net.au http://rogerbrown.tripod.com

THE SUNSHINE VITAMIN & OSTEOPOROSIS by member Vivien Holland.

In my last article I told you about some full spectrum light bulbs I’d come across that gave us the benefit of “daylight” indoors. At the time I’d just sent away for mine, so hadn’t actually used them personally. Now that I have had a chance to use them I wanted to let you know how helpful I’ve found them.

They give quite a bright, white light and really make the room light and airy. Incidentally, the room I use mine in is at the front of the house on the ground floor. The room is so bright that I as sure the whole room would be visible to passersby, despite the fact that I have net curtains. Strangely enough, this is not the case, however I would advise that you check that you’re not on view!

These bulbs certainly brighten up a dull day and even on a sunny day extend the benefits of sunlight indoors. Remember, if you’re indoors you’re not getting all the benefits of sunlight, even if the sun is streaming through the windows. So although I initially thought of them as particularly helpful during the short winter days, I now feel these bulbs are going to be beneficial all year round, especially for those who are housebound, or living in flats and maybe not able to get outside much. (There is actually another company that specialises in this type of lighting, giving a wider range of products including strip lighting for the kitchen. They are called Full Spectrum Lighting Ltd. Tel: 01494 52605 – again, I have no connection with them.)

As mentioned in my previous article, using these

light bulbs will help to produce Vitamin D in the skin in the same way as sunlight itself, but for this to happen it will obviously be necessary to expose a bit of flesh for a while each day.

I’m sure we’re all looking forward to a bit of warm weather after quite a difficult winter, hopefully it won’t be too long before we have the opportunity of sitting out in the sun at least occasionally. There’s nothing like the real thing, is there! My husband and I have never been ones to sunbathe much, but last summer we put a couple of chairs and a little table by the back door, a spot that gets the early morning sun, and whenever possible we had our breakfast out there. Neither of us likes strong sunlight, but early in the day it was really pleasant. With the worry of skin cancer these days, I wonder if we’ve become a bit overanxious and could be losing out on the benefits of moderate sunbathing. I was reading recently that a little daily UV even protects against skin cancer, which is apparently more prevalent in office workers than those used to working outside. This seems to highlight the need for moderation in all things, including sunshine exposure, taking care of course to avoid the very hot part of the day.

The reason I’m emphasising our need for Vitamin D so much is the role it plays in helping our bodies absorb calcium and strengthen the bones. With one in three women and one in twelve men at risk of osteoporosis, and for some of us our inactivity making us more at risk than most, anything we can do to strengthen the bones needs to be a priority.

I read recently that a trial is underway to give elderly people Vitamin D jabs, as they are often low in this vitamin due to poor diet and lack of sunlight. The doctors are hoping to reduce the incidence of fractures, and if the trial is successful foresee that annual Vitamin D jabs could be given to older people each winter along with the flu jab. In the meantime, we can help ourselves with good diet, supplements like cod liver oil, and also sunlight. The jabs may be useful for many, but I think I’d rather do it the natural way anyway.

Most people know about calcium for the bones but this is not the whole picture. Many other minerals are involved, particularly magnesium. Dairy produce is often recommended as a source of calcium but it is very low in magnesium. A wide variety of fruit and vegetables, whole grain cereals, nuts and seeds will give you a better balance of nutrients in general and if you are taking a calcium supplement, try to find one that includes magnesium too.

Next time I’ll be writing in more detail about osteoporosis and what we can do to help ourselves nutritionally. If anyone would like to write to me to comment on anything or to suggest a future topic, I’d be very pleased to hear from you.

“Vivien Holland” <vivienholland@hotmail.com>

Sylvia Dymond member from Hampshire UK

I contracted polio aged 15 years 8 months, although all my limbs were affected by far the worst hit was my middle. I wore a Milwaukee brace and a calliper for two years with extensive physiotherapy plus willpower I eventually left the calliper and brace off. It was not until my late thirties I began to have made to measure corsets, then in 1988 the company closed down. I sought help from the local hospital and on my first visit I was told by the doctor “we are not here for cosmetic reasons”, as if a body support for a polio victim was that!

Six more years went by, I was too weak to go out during those years I was told at St Thomas’ and Papworth they could not help. I found a private orthotist and on the day she arrived in 1997 she was so upset to see my collapsed “middle” she wept. She said she would have supports made but not to be up for more than an hour at a time, then rest. I have found this way of life so difficult. I had to go into a powered wheelchair in 1992, first for going out and then I had to start using it indoors. I progressed to doing cooking from it but am so weak now I have a carer three times a day but without my powered bed and powered chair I could not cope alone, so those of you with powered chairs start using them early enough and save your strength for longer. P.S. I am writing from a nursing Home to which I came twelve days ago to give my carers a break for 2 weeks. Unfortunately I have suffered since the first night because I did not have it in writing that 24-hour heating would be supplied to the same temperature as I have at home. I have not had the heating I need so have spent 12 days very cold and at times felt frozen, I am also not cared for the way my carers care for me as they do not understand our ways of doing actions and pacing and resting. Do any of you become frozen and in pain the way I do if the temperature is not how you normally have it? I would be interested to know. If you do feel the cold badly before you go away anywhere, check about heating and ask for a reply in writing. I have had this problem before but as I

was only told a couple of days before going that there was a vacancy I plain forgot.I would love some polio survivor penpals, UK, USA anywhere. Please write c/o the LincsPPN.

To Wheel or not to Wheel, that is the Question?

I still walk. I don’t use my scooter all the time, not yet anyway. But, I’ve found it to be a great energy saver and allows me to get out and do things I was starting to just not do as it took too much energy and caused too much pain. I’m now doing the same again as the scooter is not the right set of wheels for me with my upper body weaknesses that are getting more so then I expected they would. Now I am considering a powerchair.

To walk, stand, and/or use wheels are very personal decisions. I just know that for myself following up on my own decision to conserve more by using wheels has been more difficult to carry out than I expected. Now, for me, the prevalent attitude that being upright and walking was a major part of my own difficulty. Yes, do walk and stand as long as you can and want to (as long as you aren’t feeling weaker for it, or more fatigued, etc).

It’s not giving in to start using wheels. I was thrilled for the young man in the documentary mentioned when he could walk as it was so important to him. However I was dismayed to think that he was seriously contemplating ending his life when he couldn’t. I know that fear and loss of self worth and confidence too well and have found that I’m still me no matter how much I have already lost to PPS or how much I may in the future.

Most insurance companies and Medicare as well, see wheelchairs as “luxury” items until you can’t get out of bed without using one. As if anyone wakes up one day and thinks, “ahh, it would be so cool to use a powerchair…its so “in”…<Grin> This too, is a reflection on the lopsided view of the be all and end all of walking and standing. If we can’t get out and about but can manage in the home then we’ve no business being out and about. In fact, my MNL made the mistake of saying just this one day when we were talking about my vain attempts to get approved for a powerchair. I CAN still walk but only with a cane. I do not have braces. I have a distinctive limp. I can do just fine with those doctor office visit walks of four or five paces. But, I can feel and see the damage and deterioration I am doing when I try walking or especially standing for more than ten minutes. I become totally exhausted and can do little more that day.

My good leg is now testing out weaker than my bad one. Scary stuff to me. I’m simply taking to heart the advice I’ve heard here and in many articles I’ve read. To conserve it to keep it. I don’t want to join the others who waited till they fall and need surgery for the results of that. I also, fear losing my legs to where I would need to use my upper body to transfer. I choose to use wheels now so that I won’t (I hope anyway) be permanently in a wheelchair or in need of help to do almost everything. Another scary thought for me.

Walk by all means, but please listen to your body and take plenty of little rests along the way. I’ve been on SSD (Benefits) for nine years now. It took me better than six of these to even consider using a scooter. Now, I hop on the store scooters so I can enjoy my shopping. I either take my scooter or rent a wheelchair at fairs, craft shows etc.. again, I do it because I simply have more fun and don’t hit the Sudden Fatigue wall. To be honest it wasn’t till that started happening more and more frequently that I was ready to consider wheels.

Before that I honestly thought that those already using them were just jealous of those of us still walking (happily I found out how wrong I was). I honestly hope and pray its a long long time before PPS lets you know its time to start considering using the store scooters at least.

Answer – You can go further on electric wheels. Ellen by the seatree <lonellen@HARBORSIDE.COM>

This is an interesting topic, and a very personal one. Everyone’s situation is different. Personally, I wouldn’t trade my years of standing and walking and generally overdoing it for any amount of increased mobility now.

wkd3@MINDSPRING.COM (William K. Davenport, III)

[Editors note – You can be prescribed a wheelchair or scooter in America but only if you need to use it to get round your home. There is no DLA mobility allowance, no financial assistance/benefits to help you and your wheels get out of the house to shop, visit the doctor, socialise etc. Its not easy taking that first wheel – and it might help you to try out a store scooter away from your home where no-one knows you – but the benefits both physically and mentally are tremendous. You do so much more]

More about Breathing, Swallowing, Night Time Ventilation, Tracheotomy, in the next issue. If you have questions you want answered then pleaseas soon

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – Requests for Information Packs, Leaflets, copies of articles Hon. Sec. Wendy Grimmitt <CWGrimmitt@aol.com>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – June 2001

Articles for publication by May 20th – Publication date 5.6.2001 Founder & Chair – Hilary Hallam <linpolio@legend.co.uk>

Vice Chair – Janice Eary <janice.eary@hotmail.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Honorary Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com> Committee Members – Phil Bilton, John Eary, Ted Hutchinson, Jennifer McGowan.

Linc Pin Volume 3 Issue 4 Read More »

Linc Pin Volume 3 Issue 3

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 3 – February 2001

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

Editorial – page 2

Advice for Persons with Disabilities during Powercuts – page 3

So what should we call it? How should we define it? by Hilary Hallam – pages 4 to 5

General Information Letter for Polio Survivors: Why are “old polios” who were stable for years now losing function? What should they do about it? Jacquelin Perry, MD, DSc (Hon) – pages 6 to 7

Seasonal Affective Disorder by Vivien Holland – page 7

Report, excerpts and full articles from the Florida East Coast PPS Group Conference, Daytona Beach, December 8 to 10 2000 – pages 8 to 13.

Paul E. Peach, M.D. – Post Polio Theories and Management – page 8

Augusta S. Alba, MD, DPM&R, DNP-N – Swallowing, Breathing, Artificial Ventilation – page 8

Frederick M Maynard, MD – Life Course Perspective and Managing the late effects of polio from a life-course perspective. Clinical Evaluation and Management – page 9

Gudni Thorsteinsson, M.D. – Management of Post Polio Syndrome – Pain – page 10 Mary Ann Keenan, M.D. – Polio surgery for the new Millennium – page 10

Mary Ann Keenan, M.D. Alberto Esquenazi, M.D. – Polio 2000 – An overview. – page 10 – 13

Email to Support Group in Six Weeks Southern Hillsborough PPS Support Group, Florida.

The Pronouncement by Carol Norris Vincent

Polio sufferer fights old foe, seeks to share. Tampa Tribune – pages 14 to 17

Diagnosis PPS plus, plus – pages 18 to 19

It is not easy being a carer to a polio survivor, and it’s not easy having to accept a carers help. pages 20 to 22

Polio Time Line Condensed Version – page 23

Remembering Barbara Casson and Contact Details page 24.

EDITORIAL by Hilary Hallam

It’s now just over five years since I found out that there were late effects to polio. Since then I have attended six PPS Conferences that have given me a broad base of information from many different health professionals. There is NO doubt in my mind that the problems being experienced by Polio Survivors who do not live where there is a recognised Post Polio Clinic are the same right across the world – mainly caused by lack of knowledge and awareness of the condition by the medical profession. Colleges of Medicine have not taught their students enough about polio putting it on a ‘need to know’ level with leprosy. The fact that a late stage of polio was first medically described in 1875 and 20 years of Post Polio Conferences has not been enough to convince the decision makers at the top to change this or provide continuing education. The fact that a huge number – possibly as high as 80% – of polio survivors recovered so well that externally you can see little evidence of their internal damage until they start to have new problems means polio survivors are still a ‘hidden population’. Show your current professionals photos of you during your years of best recovery and they are likely to be amazed.

Lectures on the mechanics of polio recovery and new problems being experienced must be increased. Polio survivors have muscles that have evolved to do or assist in movements that they were not designed for. You cannot do any movement unless muscles somewhere are working – ‘we don’t know how he is walking’ is not a statement that we should hear, rather ‘he is using his x y and z muscles to achieve this action’. Manual Muscle Testing tests single muscle action not pattern of movement and does not observe grip, lift and bring to mouth in combination. It does not allow for substition or assistance of other muscles to achieve an action. Resting muscles store energy ready for action. Most often some grades recorded do not match the reported weakness. Grading a polio survivors muscles incorrectly can have implications right across the medical and benefit field. e.g. anaesthesia in operations and medical procedures, drug prescription, joint replacements and other orthopaedic surgery, refusal of electric wheelchairs or other aids that would reduce damage, incorrect medical reports that deny benefits, unnecessary stress to the patient whose reported weaknesses are not believed, etc. The only way to ensure that other polio survivors still out there and people with other neurological conditions with similar problems do not struggle as we are doing is to get together and ensure that changes are made and now. Share your experiences and help us make the changes necessary.

This newsletter contains articles, reports, and excerpts that I hope you will find informative and confirmation of the above. Our Information Packs continue to be updated. Anyone who has been a member for some years may not have a copy that contains charts to assist you in assessing yourself. If you would like a copy of the charts please get in touch with Wendy – contact details on the back page.

Ending on a personal note that I hope will help ensure that you will be able to deal with a similar situation without the same problems. In January 2000, Social Services and a City Council representative agreed in principle that alterations could be made to enlarge my bedroom, install central heating in this and the bathroom extension, and make the drive near the house accessible. In October the agency who do all the work for disabled and elderly people assured me the work could be completed by the end of January. In mid November I was told the name of the builder, that the foundation slab would be done prior to Xmas and the remainder of the work in January. Having experienced problems and stress with work being done on my house in mid 1997 plus the lack of any heating in my bedroom and bathroom getting out of the way was the only thing to do. I decided to go to the Daytona Beach PPS Conference [report pages 8 – 13] to visit the University of Miami PPS Clinic and other Florida PPS specialists and groups returning on the 31st January. For the first few weeks my daughter – knowing I would give her plenty of hassle – kept telling me that all was in hand and leave it to her. In fact she was continually ringing round the organisations involved trying to find out what was going on. Eventually in early January she rang and said ‘You are not going to believe this but I have just had a call from someone in the City Council asking to visit the house prior to the meeting to discuss if the work could go ahead!’ My comments were unprintable! As the stress to both myself and my daughter would be intolerable I am remaining here for a few more weeks. When I return I will be contacting other disability organisations to discuss this situation. The length of time this has taken and the way it has been handled has put my daughter and I under unnecessary stress, inconvenience and additional financial cost that we could have done without. Whilst we appreciate that there is a system to go through the way this has been dealt with is unbelievable.

Computers and the internet have allowed me to continue working, deal with the linpolio@legend.co.uk email, compile this newsletter, update and improve my presentations, speak at one PPS meeting and am already booked for another two. Janice and Wendy have been taking the phone calls and report the story is almost always the same. Donations, sponsorships and grants are needed to continue our work. If you have any suggestions please contact any of the committee members. Happy Valentines Day – the 4th Anniversary of our WebSite.

California is experiencing rolling blackouts. The following excerpt is excellent advice and taken from the State Independent Living Council Press Release.

ADVICE FOR PERSONS WITH DISABILITIES CONCERNING THE CURRENT POWER SHORTAGE AND POTENTIAL BLACKOUTS

In response to such concerns, the State Independent Living Council suggests that the following steps be taken by persons with disabilities or those who are in poor health or sensitive to extreme temperatures:

1) Contact the local electrical utility company in advance about any specific needs regarding breathing machines or other life-sustaining devices that depend on electricity. If lack of electricity would create an immediate threat to life or safety, local public safety agencies should also be given advance notification. To expedite emergency response, house numbers should be readily visible from the street.

2) Establish a support network of friends and neighbors who can check in periodically if the power is out, to assure that assistance is available if needed.

3) Keep a flashlight or lantern equipped with fresh batteries within easy reach, so that there is some light immediately available if the power does go out. For people with limited reach or grasping ability, inexpensive battery-operated touch lamps are a good option. Such lights can be installed in areas of greatest use, and are small enough to be carried in an emergency.

4) Do not use candles for light or heat in an emergency, as they can be fire hazards.

5) Extra blankets or warm clothing should be stored within easy reach. Most homes will retain some heat for several hours during electrical outages; do not use barbeques, gas powered appliances or propane heaters as heat sources, as the result can be carbon monoxide poisoning.

6) For people using battery-powered mobility or breathing equipment, assure that batteries are fully charged each day.

7) Store supplies of medicine and drinking water so they will be readily accessible in the event that there is a power outage; some household water supplies can be disrupted during blackouts. Assemble a 10 day supply of prescription medications and durable medical goods and store them in a convenient location, in the event that a prolonged electrical outage or other emergency should require evacuation. A copy of emergency contact numbers and current prescriptions should be stored in the same location.

8) Cordless telephones may not work during a power outage, so consider keeping a standard phone plugged into a second phone jack in case it is ever needed. A cellular telephone is also a good backup option, but be aware that in a widespread emergency any communication network may quickly become overloaded with calls.

9) Monitoring radio stations during emergency situations can help in determining the extent and probable duration of any electrical outages. Assure that a battery-operated radio is available for this purpose, with at least one set of extra batteries.

10) During Stage Three Alerts, monitor local television or radio news stations to determine if and where blackouts will occur. Check monthly electric utility bills to determine the applicable Power Block number, as that is usually how the blackout areas will be identified. If the Power Block number is not shown on the monthly bill, contact the local electric utility company to learn where that information is available. (Remember this is for the USA)

11) When an electrical outage does occur, turn off all appliances, computers and lights–except for one that will indicate when power has been restored.

“Of course, one of the most important things people can do today is to help reduce demand for electricity by using energy more efficiently,” said Collins”

Little pill, here in my hand I wonder how you understand

Just what to do or where to go To stop the aches that hurt me so/ Within your covering lies relief You work alone in unbelief You sink in regions there below As down my throat you quickly go! But what, I wonder, little pill How do you know where I am ill

And just how do you really know Just where you are supposed to go?

Author Unknown – sent by bb_dutchess@YAHOO.COM Beverly Bucellato

SO WHAT SHOULD WE CALL IT? HOW SHOULD WE DEFINE IT? by Hilary Hallam.

POLIO – POLIOMYELITIS ABORTIVE POLIO – UNSTABLE POLIO

PARALYTIC POLIO – IMMUNE TO POLIO SUB CLINICAL POLIO – INFANTILE PARALYSIS

NON PARALYTIC POLIO – POST POLIO SEQUELAE POST POLIO SYNDROME – LATE EFFECTS OF POLIO

POST POLIO MUSCULAR ATROPHY -LATE FUNCTIONAL DETERIORATION FROM POLIO

These are just some of the terms being used to describe events following ingestion of one of the three polio enteroviruses. To complicate matters these terms appear to be interpreted in different ways by different health professionals, government departments and countries. There are some excellent medical articles, included in this and previous newsletters and in our Library but often we hear the phrase ‘but they are not British articles’.

Post Polio Support Groups around the world are contacted almost daily by people telling the same story. They had polio, recovered well and until a certain stage in their life was living it to the full. In the last few years something has happened and they are now no longer able to function as they did and its not just age related. Repeated visits to health professionals have left them inadequately diagnosed and treated. Many report being treated as if they are exaggerating the symptoms, and some are told that ‘its all in your mind’. They have just learned from a newspaper article or searching on the Internet that there is a latter stage to polio, their symptoms fit those they are reading, and they are looking for doctors that will be able to help them. The tragedy is that the huge sigh of relief they get on learning that they are not mad, its not all in their mind, that there is a possible reason for what is happening, gets dashed when they find that there are few specialists in the condition. Few places in the world to get the necessary holistic multi-disciplinary assessment needed. For the majority of Polio Survivors there are many more hurdles to get over.

Why is this happening? The first reason is the fact that the vaccine first used in the mid 50’s reduced the numbers affected. Therefore there was no need to continue researching a condition that was dying out. Therefore most Colleges of Medicine, in epidemic free countries, do more than mention the condition as they do leprosy. The fact that late effects of polio was first medically noted in 1875 has been forgotten.

In the latter decades of the 1900’s most health professionals when asked about polio think ‘polio vaccine’ and when prompted recall their early lectures about paralysis and iron lungs. If you do not have a thin limb, a short foot, callipers then you often get asked ‘Are you sure you had polio?’ Most health professionals will tell you that they have never seen a case of polio in the first instance, and if they have a patient on their books who had polio will often happily tell you how fit that person is, highlighting another reason why we have difficulty. There is no set pattern, different damage, recovery, lifestyles and new symptoms.

The majority of polio survivors recovered way beyond what was expected of them, most showing little external sign of the internal nerve damage. Polio survivors had to struggle to recover and determination to succeed in whatever they could was the norm. If you told a Polio Survivor that they could not do something then they went out of their way to prove you wrong. Even those who visibly lived with their polio in calipers (braces) and wheelchairs have made huge successes of their lives. What has not been realised is the level of recovery and the many and varied professions and qualifications that polio survivors have achieved. The Armed Services, Police, Doctors and allied health professionals, Professors, teachers, lawyers, accountants, others worked in professions where they were climbing ladders, standing all day using heavy machinery. Some played professional sport and many achieved highly in sports like football, judo, karate, rugby, athletics, climbing, and all manner of water sports. POLIO was part of their past, over and done with, end of story, and no-one told them otherwise.

Another reason is this difference of opinion of how we should define each level of polio depending on the amount of damage that your body received. Following the ingestion of one of the three polio viruses

there is a line from below becoming immune, through immunity, mild flu like illness, clinically evident weakness, clinically evident paralysis to death. Bodian and others in the 40’s and 50’s from post mortems of those that had identifiable polio revealed that the virus affected 90% of our body. Prof. Sharrard showed that clinically evident weakness did not show till over 40% damage. Therefore we can have different levels of damage and name in different areas of our body. What we do know is that you cannot have late effects of nerve damage from one of the three polioviruses if you did not have that nerve damage in the first place. EMG’s and muscle biopsies can show evidence of changes in the muscle but if they are taken from an area of the body that did not experience any polio damage then a negative test might not be conclusive. There is only one way to find out exactly how much nerve damage you had if you took in a polio virus and that is a post mortem – not an acceptable diagnostic tool!

Despite the fact that these new symptoms first described in 1875 and have been part of research since the mid 70’s and conferences since 1982, and many medical articles, many health professionals working today have not heard of the condition, and many of those that have are still sceptical of its existence. Taking the phrase Post Polio Syndrome (PPS) as the most commonly used one another reason is that there are NO tests for PPS. It is a clinical diagnosis of exclusion. Where there is a holistic multidisciplinary approach where the polio survivor is seen to perform the tasks that they are reporting difficulty with, assessment, diagnosis, advice and treatment are given. However, there are very few health professionals who are specialists in polio and its late effects for primary care physicians to refer their patients to. The majority are being seen by health professionals without specialist knowledge and experience who do not realise that using manual muscle testing believing it to be a reliable diagnostic tool of finding weakness means they are most often not finding evidence to back up the reported weakness and functional decline.

Manual Muscle Testing used as an assessment of muscle ability in a single one off action on a Polio Survivor will get different results depending on size of the tester, amount of pressure used, time of day, and what the person has been doing prior to this test. Manual Muscle Testing does not test a pattern of movement only a single muscle action. It does not allow for the fact that to do an action polio survivors can and do substitute other muscles, and/or use additional muscles to achieve patterns of movement. It does not allow for the fact that as soon as a muscle rests it starts storing energy for the next time its needed. Polio affected muscles can repeat or sustain an action for a short time but then once symptoms have started this declines far earlier than would normally be expected. It does not allow for the fact that a Polio Muscle functions at a much lower level than a normal muscle, i.e. 5 at 53 to 59%, 4 at 40%, 3 at 20%, 2 at 10% and 1 at 1% (Beasley and Perry). Dr. Perry explains why this happens in an article on the next page.

In late 1997 Professor Sharrard, an eminent UK Professor of Polio working at the time of the epidemics replied to me, ‘ What you are describing is Polio fullstop. It does not go away, you did not HAD it, you have it. Polio has the most remarkable recovery system and that is what you have lived with and without which you would have remained at your worst. You are just describing what we knew could happen to you at some stage in your latter years. It’s just Polio.’

So what should we call it, how should we define it, how should we be assessed (see page 10) and treated. There are many medical articles that give us this information but in the U.K. we are told there are not enough of us to fund this. If we are not examined and assessed correctly then conditions can be missed, operations don’t have the expected result, and we can and are deteriorating at an unnecessary rate. I put this to Joan L. Headley, Executive Director of GINI (Gazette International Networking Institute) International Polio Network after the Daytona Beach Conference and asked would it be possible for a definitive statement that prevents as much misinterpretation as possible to be produced and signed by as many eminent polio and post polio specialists and PPS groups across the world as possible. There are estimated to be over 12 million polio survivors in the world whose lives could benefit from this. We continue to correspond on this.

Other chronic neurological conditions have similar problems, add our numbers together and we become a large % of the population. We are working with the Neurological Alliance and Long-Term Medical Conditions Alliance in the hope of getting holistic multi-disciplinary assessment for all.

Hilary Hallam, Founder and Chair – Lincolnshire Post Polio Network <linpolio@legend.co.uk>

Reprinted from Polio Network News,

Fall 2000 Vol. 16, No. 4 with permission of

Gazette International Networking Institute, 4207 Lindell Blvd., #110, St. Louis, MO 63108-2915.

General Information Letter for Polio Survivors: Why are “old polios” who were stable for years now losing function? What should they do about it?

by Jacquelin Perry, MD, DSc (Hon), Rancho Los Amigos National Rehabilitation Center, Downey, California

Jacquelin Perry, MD, DSc (Hon), was certified by the American Board of Orthopedic Surgery – one of the first women to be certified – in 1958. Immediately after her residency in orthopedic surgery, she was invited by Dr. Vernon Nichol (Chief of Surgical Services) to join his staff at Rancho Los Amigos in the Los Angeles area. She has been involved in the management of the problems of polio survivors since that time. She is Professor Emeritus Orthopaedics, University of Southern California.

The basic problem is that polio destroyed some of the nerve cells that activate the muscles. To the extent possible, the neurological system responded by having the remaining nerves adopt the muscle fibers that had lost their original nerve supply. This meant that nerve cells now had a demand much greater than normal. While this was an effective solution initially, the passage of time (30+ years, usually) has taught us that overuse can be destructive. As a result, these secondary nerves are wearing out with resulting muscle loss, i.e., post-polio syndrome.

Post-polio muscle strength is commonly over estimated as the usual test depends on manual resistance by the examiner. In addition, polio survivors mask their disability by clever use of their normal control and normal position sense to substitute for missing musculature. The post-polio muscle graded “normal” (5) averages 25% less than “true” normal (only 50% normal for the quadriceps). Similarly, the muscle graded “good” (4) is only 40% of normal strength. These strengths are adequate for a person to carry on customary activities in a typical manner, but at a demand that is 2 – 2-1/2 times the usual intensity; hence, the muscle nerves have been experiencing strain for years.

The apparent abrupt loss in function relates to two functions. One is the buffer zone present in all of our physiological systems which enables them to accept strain for a considerable time, but once the buffer limits are exceeded, the loss is very prominent. Secondly, activities such as walking or lifting objects present fixed mechanical demands. As long as the person’s muscle strength exceeds that demand, he/she can continue to perform as usual but with earlier fatigue. When the strength goes below the essential limit, suddenly that function is lost.

The answer is redesigning your lifestyle to avoid those activities that cause muscle strain, cramping, persistent fatigue, and, consequently, weakening. This means to very carefully look at how you are using your arms, legs, and back, and to avoid those tasks that cause the symptoms of persistent fatigue, muscle soreness, and/or a sense of weakness after use. At times, this requires the employment of special devices to take the load off of the arms. If the changes are made early, strength can be recovered. It will not be sufficient to prepare the muscles for excessive strain again, but it does bring the muscles up to a more useful level. Other ways of reducing strain is by using self-care devices, walking aids, braces, and corrective surgery to lessen the stress.

Once the strain has been reduced, then cautious exercise may be of value. We have been using short duration (5 repetitions) or moderate intensity (50-70% of one’s maximum capability). Let me caution you not to take on the exercises, however, until you have worked out a lifestyle that avoids the strain. Also, if the exercises cause any pain, persistent fatigue, or increased weakness, STOP! This means just the mechanics/activities of daily living (ADL) are sufficient exercise for your muscles.

Recent research on the course of muscle strength over time in persons over age 50 years showed a normal average decline of 1% per year, but for post-polio survivors the rate was 2% per year. The rate of change is so subtle that a four-year study was needed for a measurable change. Also, the weaker “polios” experienced greater functional loss. This latter fact appeared to indicate strength training by exercise would deter the process. However, retesting this group of polio survivors at eight years and adding muscle analysis told a different story. The muscle fibers were hypertrophied, twice normal size, not atrophic. The person with the greatest strength loss also had the greatest hypertrophy.* MRI recordings showed areas of muscle loss and fatty replacement. The source of the visible muscle atrophy is muscle fiber loss secondary to nerve fiber overuse failure. These findings confirm the need for a saving program rather than challenging exercise.

The advantage of having had polio rather than another disability is that it allowed one to resume a very active and profit-able life for many years. Now it is necessary to recognize that excessive strain was being experienced and that lifestyles must be changed to

accommodate this situation.

Be an “Intelligent Hypochondriac” — Listen to your body and adopt a program that avoids the strain.

* “Several histologic studies have shown that the myofibers of polio survivors can be twice the size of those found in other persons. A few studies have provided indirect evidence for a possible transformation of some of the surviving type II (fast-twitch fibers) to type I (slow-twitch fibers). The few studies performed have shown a preponderance of type I muscle fibers in very weak muscles that were constantly being used in daily activities. It has been postulated that a person would have to utilize all motor units in these very weak muscles to perform all daily activities and that, over time, the type II fibers are transformed to type I fibers.”

Source: Agre, J.C., Sliwa, J.A. (2000). Neuromuscular rehabilitation and electrodiagnosis. Archives of Physical Medicine & Rehabilitation 81(3), Suppl S27- 31.

Starting New Study – Sophia Chun, MD, works with Dr. Perry at the Post-Polio Service, Rancho Los Amigos National Rehabilitation Center, Downey, California (www.rancho.org), and reports that they will be studying the effects of creatine monohydrate on strength, endurance, and fatigue level in symptomatic post-polio patients (in Southern California) starting in late October or November 2000.

Seasonal Affective Disorder by Vivien Holland

Although we have a large part of the winter ahead of us, I always feel heartened once we’re into the new year and the days start to get longer. After the prolonged wet weather last year, it’s been most welcome to have some bright days, even though it’s been quite cold. Maybe like me you sometimes feel like hibernating. I like to make the home as cosy as possible, drawing the curtains as soon as the light begins to fade, putting on table lamps and even lighting a scented candle.

The winter can be a depressing time, especially for those who are housebound, or living alone, so anything that helps us get through to the Spring is welcome. Some are affected very badly by the long dark days and might be diagnosed as having Seasonal Affective Disorder (SAD), which is related to the short hours of daylight. Symptoms can include depression, irritability, insomnia and weight gain. In serious cases, sometimes light therapy is recommended which involves sitting in front of a light box for up to an hour each day, which gives off the full spectrum of light we get from daylight. Light boxes can be quite expensive though.

This full spectrum light benefits us in many ways. It causes the skin to form Vitamin D which strengthens bones. Blood cholesterol levels are reduced and high blood pressure is lowered. It improves the function of the immune system and has a beneficial effect on our emotional and mental well being. It’s no wonder most of us feel better for spending some time outdoors.

Knowing how good daylight is for us and how we’d all benefit from a bit extra, I was very pleased recently to come across some light bulbs that do the same job as a light box. At £23.90 each, these “Biolights” are a lot cheaper than a light box, they fit an ordinary bayonet socket and will last a long time. (If used for 3 hours a day they will last up to 8 years and if used for 8 hours, 3-4 years.) I’m told that running costs are cheaper than ordinary light bulbs. I like the idea of having the home lit by “daylight” over a longer period rather than having an intensive amount of light for one hour, as with a light box. Also everyone in the family can benefit, even pets and plants apparently. To be effective, the light needs to reach the eyes without the barrier of eye glasses or contact lenses. Also an open type of lampshade is needed rather than one that encloses the bulb. They are perfectly safe to use for extended periods, but in case you’re wondering, I’m afraid they won’t give you a tan!

Biolights are available mail order from Higher Nature, Tel: 01435 882880. The company also sell a wide range of food supplements which you may be interested in. (n.b. Cod liver oil gives us Vitamins A and D, making it a very useful winter supplement.) I am not connected with the company.

N.B. ERROR IN LAST NEWSLETTER.

On page 21 of the last newsletter in the sixth paragraph second sentence of Virginia Holland’s article on Relaxation I inadvertently typed the word “breathing” instead of “good” . Please alter your copy to read….. but I have purposely used the word “good” instead of “deep”.

Patient on phone to Doctor.

‘Doctor my wife is pregnant and her contractions are two minutes apart’

‘Is this her first child?’ the doctor asked..

‘NO!’ the man shouted, ‘This is her husband’

Florida East Coast Post-Polio Support Group Late Effects of Polio – Overview 2000

December 8th – 10th 2000 Daytona Beach, Florida.

Barbara Goldstein <bgold@iag.net> and her committee and members are to be congratulated on an excellent conference. I will cover most of the speakers in this newsletter and the remainder in the next.

Paul E. Peach, M.D. Medical Director,

Palmyra Post Polio Clinic, Georgia. Post Polio Theories and Management – report.

Dr. Peach talked about the fact that the new problems polio survivors are experiencing were first medically recorded in 1875 and that since the early 80’s there has been a resurgence of research. He went through the criteria and symptoms and then explained some of the theories as to why this is happening. There is no definitive theory at present, suggestions are premature aging of motor units due to polio nerve damage [Dr. Lønnberg from Denmark at the Dublin PPS Conference explained a very basic average graph of functional ability. The left hand side is functional ability and the bottom line is age in years. Start from birth and the line goes up to adulthood and then down again in a much longer shallower line. When you had your polio your line dipped down again and up with recovery, but it is unlikely to reach the level it would have done had you not had polio] chronic viral infection [quite a few polio survivors talk about feeling flu-like when symptoms are bad], immune response, central fatigue, chronic and acute overuse of nerves and muscles, and motor unit dysfunction. Is there just one reason or are there many? It is important to have an evaluation by medical specialists who are knowledgeable and experienced in diagnosing and managing Post polio symptoms and functional problems. There are no tests for PPS but tests are done to eliminate other possible causes. [Remember we can have all other conditions as well as or instead of – showing the importance of accurate holistic assessment. ‘You had polio you have PPS’ can be just as problematical as not being diagnosed. Continue to report your new symptoms as the can fit so many conditions, do not assume it must be PPS or related to polio.]

What can you do about the symptoms? Eliminate or reduce overuse patterns. Try using aids such as bracing, scooters, wheelchairs. Make changes in your lifestyle by altering your work and home environment to save wasting energy where it is not necessary. Change your job or give up working. Pace and rest activities. The sooner you start making changes the sooner the level of decline that you are experiencing will lessen.

Augusta S. Alba, MD, DPM&R, DNP-N Director Rehabilitation Medicine,

Coler Goldwater Memorial Hospital and Clinical Associate Professor

Rusk Institute of Rehabilitation Medicine, New York University Medical Center.

Swallowing, Breathing, Artificial Ventilation – report.

Dr. Alba’s presentation was excellent, her handout very comprehensive, but very medical in content and difficult to report on without diagrams. We will therefore include a more comprehensive article on this in a future newsletter. Please let us know what questions you would like answered. I have included the subject headings and one excerpt to give you an idea of the topics covered. If you wish a full copy of the text for your health professionals then please get in touch.

Swallowing – covers examination and stages of swallow and recommendations for feeding procedures and further assessment and treatment programs. It mentions. GERD (gastroesohageal reflux disease) and OSA (Obstructive Sleep Apnea)

Excerpt from Breathing.

Causes of decline in breathing reserve. The vital capacity (VC or deepest breath possible) and maximum voluntary ventilation (MVV) decrease with aging. This natural aging process which is somewhat accelerated in post-polio, leads to a decrease in breathing reserve. During rest or activity the breathing reserve index for that particular state is defined as the MV/MVV. The MV is the minute ventilation or amount of air required by the person during one minute. The MVV is the greatest amount of air the person can exchange during one minute with maximal effort.

Most post polio individuals have a decrease in breathing reserve but do not require artificial ventilation for respiratory insufficiency. [end of excerpt] [This fact is important if you are to undergo any kind of anaesthetic]. It goes on to describe late onset of respiratory insufficiency and breathing exercises.

Artificial Ventilation – covers, Cough, CPAP/BiPAP, Positive Pressure Ventilation. Home Mechanical Ventilation, patient education, bronchial hygiene regimens, relaxation techniques, diaphragmatic retraining, support and coaching, Arterial blood gases – invasive and non-invasive, pulmonary function tests, sputum cultures and sensitivities, mobile electrocardiograms, ventilator management and tracheotomy care.

Frederick M Maynard, MD U.P. Rehab Medicine Assoc., PC

Marquette, MI Life Course Perspective

The Life-course perspective for studying disability emphasises the importance of developmental stages and tasks within an historical and medical context. It finds that decisions about current disability-related issues are influenced by broader concerns about identity and the fulfilment of personal and cultural expectations (Scheer J, & Luborksy, ML (1991) The cultural context of polio biographies. Orthopedics 14(11), 1173-1181.) Early life experiences with disability are often found to still be important in later life.

The life-course perspective on the late effects of polio considers it a secondary condition for which most polio survivors are ‘at risk’ as they grow older. The new problems with mobility, including fatigue, pain, increased weakness, and falling, are considered to be triggered by the onset of the other medical conditions (see CO-MORBIDITIES) such as obesity, arthritis, depression, heart disease, diabetes, injuries (see TRAUMA) stress, etc. How polio survivors respond, psychologically, behaviourally, and medically, to the onset of these other conditions will determine the course of possible functional decline during the rest of their lives.

Approaching the new medical problems of polio survivors using the traditional medical disease/illness perspective promotes fear due to unknown etiology and course, expectations of cure, anger, hopelessness, dependency, and multiple expensive evaluations. A life -course perspective promotes self-awareness, emotional growth, and information seeking. It advocates lifestyle change and health promotion to forestall or prevent future problems.

From Maynard, Frederick (1999) Life-Course Perspective. In F.M. Maynard & J. L. Headley (Eds), Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors, Revised Edition. St. Louis: Gazette International. If you would like a copy please contact us for details.

Frederick M Maynard, MD

Managing the late effects of polio from a life-course perspective.

Excerpt – Clinical Evaluation and Management

What then should a physician’s approach be in treating patients with post polio syndrome? It should begin comprehensive and detailed history that allows them to gain a life-course perspective on the person’s functional abilities and activity patterns and on the severity of any residual polio impairments and functional limitations. This will enable a practitioner to consider all current symptoms in the appropriate context and to evaluate them in relation to current muscle strength, joint deformities, functional abilities, and other general health indicators. On the basis of the initial comprehensive assessment a further in-depth review of systems may be needed to consider the impact of all other health issues on musculoskeletal functioning and PPS symptomatology. The practitioner must adopt a primary-care-physician approach to the health of the person with post polio and must decide if a diagnostic workup is needed to identify other conditions that may be treatable and that may impact on the general health issues that must be considered, include cardiopulmonary diseases that affect vitality and endurance; endocrine diseases such as hypothyroidism and diabetes; immunological abnormalities including allergic disorders and states of chronic stress; nocturnal hyperventilation and sleep apnea; dysphagia; neuromusculoskeletal problems including spinal disorders associated with spinal cord or nerve root impingement; peripheral nerve compression syndromes; myofascial pain syndromes; arthritis; and psychoemotional disorders such as depression and posttraumatic stress syndromes.

After all secondary conditions have been fully evaluated and optimally treated or managed, persons with post-polio must build a partnership with their physician based on effective communication and trust. Patients should receive all rehabilitative therapies that can assist them to improve functional limitations, reestablish mental and physical equilibrium in their lives and adopt an attitude of negotiation, with any residual new (secondary) disability. They should be informed about and offered adjunctive treatment options, such as exercise drugs for fatigue or new assistive devices. Consultations with occupational therapists, social workers or psychologists, as well as participation in support groups, can be of additional assistance in considering beneficial changes in life-style.

Lastly, the physician needs to facilitate the patient’s adoption of a health promotion and risk prevention attitude toward their health and life-style. After reviewing their vulnerability to progressive functional loss over the life course, patients should be encouraged to participate in wellness programs that can provide them with information and guide them in taking behavioural changes that focus on nutrition, exercise, functional activity, posture, stress reduction, and coping. In summary, new scientific knowledge and advances about the late effects of polio will be used optimally in the lives of person with post-polio only if applied with advanced skill in the art of medicine. end of excerpt.

[Full copy available on request – see Chart page 23]

Gudni Thorsteinsson, M.D. Department of Physical Medicine & Rehabilitation

Mayo Clinic Jacksonville, Florida. Management of Post Polio Syndrome – report.

Excerpt on Pain, the third most common symptom in postpolio syndrome, has been noted in the muscles in 39 to 86% of persons and in the joints in 51 to 79%. The peripheral or muscle pain (myalgic pain) is perceived as a deep ache and may be a symptom of

muscle disuse or overuse (as previously explained) or muscle dysfunction manifested by cramps. Possibly, post polio syndrome pain is a part of myofascial pain syndrome or fibromyalgia. Recent studies have fond that Fibromyalgia is extremely prevalent in patients with post polio syndrome. end

He explained how it is important to have posture and body mechanics evaluated so that changes can be made during activities of daily living, household tasks and work to reduce or avoid the actions that are causing the pain. Bracing and use of other aids can help. Antidepressants or similar medication for myofascial pain should be considered. Gentle stretching exercises, range of movement and relaxation can be helpful. For joint pain heat and nonsteroidal anti-inflammatory drugs and Acetominophen (pain killer) can be of substantial help. Narcotic medications should be avoided but may be necessary if extensive trials of other medicines fail.

Mary Ann Keenan, M.D. Neuro Orthopaedic Program,

Einstein Medical Centre, Philadelphia. Polio Surgery for the new Millennium – report.

Dr. Keenan explained that our symptoms must be assessed with an interdisciplinary approach, it must be holistic, and that surgery is last on the list. The goals of late surgery are the relief of pain, correction of deformities, move muscle forces checking that moving it it does not lose strength, stabilise unstable joints and make bracing more effective. It is not for eliminating bracing or improving muscle strength. She then went through various parts of the body and of particular note are Rotator Cuff Surgery and Joint Replacement.

Shoulders and Rotator Cuff Surgery – there are four muscles, the supraspinatus, infraspinatus, teres major and sub scapula. The supraspinatus takes the peak pressure. Normally only one is torn, but in polio we see both the supraspinatus and infraspinatus torn. This occurs with using the arms to push up from and lower into seated position, not from using crutches. Avoid the need for surgery if at all possible. If there is damage, you have to ask ‘Is it worth repairing?’ Evaluate what the outcome will be. We checked on non polios of same sex, age and the results of relief were the same, but there is one difference the underlying strength is different. This is a big operation, people who need their arms now have them taken out of action whilst they recover, they become really disabled immediately following the operation. Major and minor surgery is the same for the doctor but for a polio survivor even minor surgery can be major. There is nothing that can be done for weakness at the shoulder, it is therefore imperative that you SAVE YOUR SHOULDERS. Use aids that save you overstraining or overusing these joints. such as electric rise leg raise chairs.

Joint replacements. It is imperative that all muscles are graded correctly. Hip replacement – Grade 4 strength hip adductor and extensor strength is needed, plus adequate bone stock. Correct other leg deformities and an orthotic may be necessary. Knee replacement – Need adequate bone stock, correct other bone deformities, use an unconstrained prosthesis, and protect the leg with a KAFO forever. [KAFO, knee ankle foot orthosis, long leg brace]. It is imperative that all polio survivors who are told that they need orthopaedic surgery are evaluated by specialists who have adequate knowledge and experience of treating polio survivors.

Mary Ann Keenan, M.D. Alberto Esquenazi, M.D. The Einstein-Moss Rehab Post-Polio Program, Institute for Mobility Evaluation and Treatment, Albert Einstein Medical Center,

5501 Old York Road, Philadelphia, PA 19141.

Polio 2001 – An overview – full article.

Acute Poliomyelitis.

Because of effective immunization programs, acute poliomyelitis has become a rare occurrence in most of the world. The last major epidemics in the developed world occurred during the early 1950’s.

Poliomyelitis is the result of a viral infection, which attacks the anterior horn cells of the spinal cord. The anterior horn cells control the skeletal muscle cells of the trunk and limbs. All of the anterior horn cells are affected with the acute infection. This accounts for the diffuse severe paralysis seen with the initial infection. A variable number of anterior horn cells survive the initial infection.

Acute polio is characterised by the sudden onset of paralysis accompanied by fever, acute muscle pain and often a stiff neck. Paralysis of the respiratory muscles is life threatening in the acute stage. When the shoulder muscles are involved, respiratory compromise should be suspected because of the close proximity of the anterior horn cells controlling each in the spinal cord. Mechanical support of ventilation may be required.

The treatment in the acute stage of the disease consists of providing the needed respiratory support, decreasing muscle pain, and performing regular range of motion exercises to prevent the formation of joint contractures.

Subacute Poliomyelitis.

The subacute stage of polio is characterized by the recovery of a variable amount of muscle function. Mechanisms of regaining strength include 1) anterior horn cell survival, 2) axon sprouting, 3) muscle hypertrophy. Although all of the anterior horn cells in the spinal cord were affected by the initial infection, some will survive. The average number of anterior horn cells to survive is 47% (Range 12 to 94%) as seen from post mortem studies. The pattern of anterior horn cell

survival in the spinal cord is random and does not follow anatomically continuous areas. The distribution of the paralysis is variable depending on which anterior horn cells were destroyed.

Additional muscle function is gained during the recovery phase by axon sprouting. One anterior horn cell innervates a group of muscle cells. When muscle cells are ‘orphaned’ by the death of their anterior horn cell, a nearby nerve cell can sprout additional connections (axons) and ‘adopt’ some of the muscle cells A motor unit is defined as a nerve cell and all of the muscle cells it controls. The axon sprouting which occurs after polio can result in very large motor units.

The other mechanism by which people regain strength after polio is by muscle hypertrophy. The surviving muscle cells enlarge in an effort to provide additional needed power. During the subacute stage of the disease, which may last from 16 to 24 months following onset, the emphasis is on preventing deformities and preserving function. Splinting and braces are often helpful to maintain joint position and supplement function.

Residual poliomyelitis.

It was during the residual stage that the orthopaedic surgeon traditionally became active utilising surgical procedures to restore lost function and provide structural stability. If the person was still growing, it was important to prevent the formation of skeletal deformities resulting from the muscle imbalance.

The person with compromised function of the diaphragm was taught glossopharyngeal breathing in which air is swallowed into the lungs. This provides sufficient air exchange for light activities performed while sitting. The person often still required mechanical support of ventilation while sleeping.

Post Polio Syndrome.

With the last major polio epidemics in the United States occurring in the early 1950’s, it has become common to see individuals who had polio as a child now returning complaining of increasing weakness. Many are concerned about loss of function. Polio has always been considered to be a static disease in that the paralysis is not progressive. The increasing weakness has been attributed to the overuse of muscles already weakened by the polio. Often muscles, which were thought unaffected, exhibit weakness at a later date. Studies have shown that a muscle must lose 30 to 40% of its strength for weakness to be detected using manual muscle testing. Gait laboratory studies have also demonstrated that activities of daily living require more muscle strength and stamina than were previously appreciated. Polio survivors have traditionally been encouraged to work harder to regain strength. The concepts of ‘no pain, no gain’ has proven detrimental to the polio survivor because it has encouraged chronic overuse of their muscles and resulted in further deterioration of function.

Most polio survivors begin to notice the deterioration approximately 30 years after the onset of the disease. The combination of symptoms varies slightly between people. The diagnosis of post-polio syndrome is made on the following clinical criteria:-

• A history of poliomyelitis.

• A pattern of muscle weakness which is random and

does not follow any nerve root or peripheral nerve

distribution.

• A constellation of symptoms indicating decreasing

strength and function. (Table 1).

There are no tests that are diagnostic of post polio syndrome. Electromyography can demonstrate the presence of large motor units resulting from the previous axon sprouting. These findings are supportive but not diagnostic of polio.

Table 1.

Increasing Muscle Weakness. Joint pain or Instability Severe Fatigue Muscle Pain Muscle Fasciculations.

Sleep ApneaIntolerance of ColdDepressionIntolerance of ColdMuscle Cramp.

Treatment of Post-Polio Syndrome.

The treatment of post-polio syndrome is directed at preserving current muscle strength and preventing further weakness from occurring. Generally, it is not possible to strengthen a muscle that has been weakened by polio. Some gain in strength can be seen when chronic overuse is corrected. The basic principles of treatment of post-polio syndrome are:

• Lifestyle modifications to prevent chronic overuse

of weak muscles.

• A limited exercise program incorporating frequent

rest periods to prevent disuse atrophy and

weakness.

• Lightweight orthotic support of limbs to protect

joints and substitute for muscle function.

• Orthopaedic surgery to correct limb or trunk

deformities.

Spine

A common complaint is back pain that usually results from postural strain. Excessive lumbar (low back) extension is used to substitute for weak or paralyzed hip extensors. Neck pain is frequently seen also. This, too, is from slowly increasing weakness. At times the neck muscles become tight from the strain and can actually

press on the brachial plexus nerves of the arms causing numbness. This is called ‘Thoracic Outlet Syndrome’ It is treated with gentle stretching exercises of the neck. Both complaints can be treated by the use of external supports. It is important to relieve the excess workload from the muscles to prevent further deterioration. For neck pain tilting the seat of a chair backward 10 degrees is often sufficient to relive the fatigue of the posterior cervical muscles from supporting the head. Patient education is essential since most individuals are reluctant to use braces that they long ago discarded.

Paralysis of the cervical (neck) spine musculature can result in the inability to maintain the head erect. This interferes with performing all other functions including walking. Fusion of the cervical spine can correct the problem.

Scoliosis (spinal curvature) is common secondary to paralysis and the resulting muscle imbalance. It can be further enhanced if a leg length discrepancy exists. External supports can be used to support the spine but these often interfere with breathing. Spinal fusion may be needed to control the spine adequately. If fusion is needed, prolonged immobilisation post-operatively is to be avoided. Prior to any surgery requiring general anesthesia or significant sedation, the vital capacity of the lungs should be assessed to determine the individual’s need for respiratory support.

Upper Extremity.

Shoulder. – The Shoulder is important for placing the hand in the desired position for use. The shoulder is totally dependant on muscle strength for active mobility. Weak muscles about the shoulder can be made more functional with the use of mobile arm supports for the wheelchair user. This allows a greater arc of motion with less muscle strength. In the ambulatory person who requires upper extremity aids, shoulder stability is more important and a shoulder fusion may be helpful if there is sufficient strength of the chest wall muscles. Motion between the shoulder blade and the chest wall is maintained allowing use of the extremity for tabletop activities. Shoulder fusion does restrict the ability of the person to position the hand for bathroom hygiene so it is undesirable to fuse both shoulders.

Preservation of shoulder strength should be a priority of treatment since bracing and surgery of the paretic shoulder offer limited improvement. Shoulder weakness is found in 95% of individuals with post polio syndrome and correlates closely with the amount of lower extremity weakness present. Rotator cuff tears are also common. Individuals with weak legs will use their arms to push up from a chair and pull themselves upstairs. They also lean heavily on upper extremity aids while walking. It is therefore important to remove as many unnecessary strains from the shoulders as possible. This can be done using elevated seats, motorized lift chairs, elevators or motorised stair chair glides [stair lifts] and optimal lower extremity bracing. In minimally or non ambulatory individuals, an electric wheelchair or motorized scooter should be prescribed to prevent excessive strain on the shoulder muscles caused by propelling a manual wheelchair.

Elbow – The elbow requires sufficient flexor strength to lift an object against gravity for function. A mobile arm support can maximise the effectiveness of the muscle strength for the person. Tendon transfers, such as deltoid to the biceps, may also be useful in restoring muscle function.

Hand – Opponens paralysis is common in the hand and results in a 50% loss of hand function. A splint used during the acute and recovery phase is useful to prevent an adduction contracture. Tendon transfers can restore Opponens function. The most common muscle transferred is the superficial flexor of the ring finger.

Paralysis of the small intrinsic muscles of the hand interferes with function. A lumbrical bar orthosis will prevent hyperextension of the metarcarpophalangeal joints and allow the long extensors to extend the fingers and open the hand. Surgical capsulodesis (tightening of the joint capsule) to limit metacarpophalangeal joint extension will accomplish the same result.

Paralysis of the finger flexors and extensors can be overcome with the use of a flexor hinge brace if the wrist extensor function is present. Tendon transfers can provide the same result allowing the tenodesis effect to provide grasp and pinch functions.

Lower extremities.

Full range of motion of the hip and knee joints is needed for function. Contractures should be corrected when possible to permit more effective bracing. Iliotibial band contractures of the outer thigh are common. This causes the hip to assume a position of flexion, external rotation and abduction. The knee assumes a valgus (knock-knee) alignment and the tibia is externally rotated on the femur. Release or lengthening of the iliotibial band will correct the deformity.

An individual with flail lower extremities can stand using crutches and a knee-ankle-foot orthosis (KAFO) with the knees locked in extension and the ankles in slight dorsiflexion by hyperextending the hips and utilising the strong anterior hip capsule for support. Flexion contractures of the hips or knees prevents this alignment. If trunk support and upper extremity strength is adequate, the person could ambulate with a swing-through gait for short distances. This gait has

high energy demands. With time the posterior knee joint capsule becomes stretched and the knee develops a recurvatum (back knee) deformity which is painful and can lead to arthritic degeneration of the knee. A knee ankle foot orthosis (KAFO) will protect the knee and provide improved stability for walking. If there is Grade 3 (FAIR) strength in the hip flexor muscles and passive full knee extension, then the knee joints can be left unlocked for walking. In this case a posteriorly offset knee joint is used to stablize the knee and ankle dorsiflexion is limited to minus 3 degrees of neutral dorsiflexion to provide a hyperextension moment to the knee for stability.

Quadriceps (front thigh muscles) strength is not essential for ambulation. A strong gluteus maximus (buttocks) and good calf strength can substitute by keeping the knee locked in extension. If the calf strength is inadequate to control the forward motion of the tibia in mid to late stance, an ankle foot orthosis (AFO – brace) is needed. This could result in a back knee deformity from the hyperextension push on the knee joint. An equinus (toe down) position of the foot inhibits forward momentum and limits step length by preventing body weight from rolling over the forefoot prior to contact of the opposite leg with the ground. When good hamstring (back of thigh muscles) function is present, two of these muscles can be transferred to the quadriceps tendon to provide dynamic knee stability.

Muscle imbalances in the foot can lead to deformity. When muscle imbalances exist, tendon releases or transfers should be considered prior to the development of fixed deformities. Equinus (toe down) contractures of the ankle is very common. This results in genu recurvatum (back knee). The equinus should be corrected by Achilles tendon (heel cord) lengthening. Accommodating the toe down posture by using an elevated heel on the shoe is not a good solution since this places excessive stress on the calf muscles to control the leg.

An Achilles tendon lengthening is frequently needed to correct an equinus (toe down) contracture of the ankle to permit adequate bracing. When a cavus foot (very high arch) deformity is present, this causes forefoot equinus, which also limits bracing. If no fixed bony abnormalities are present, then release of the plantar fascia ligament will be sufficient to correct the deformity. If the cavus deformity is caused by bony deformity, then a closing wedge osteotomy (cutting the bone) is needed to correct the deformity. A triple arthrodesis (fusion) of the heel can be used to correct deformities and provide a stable base of support.

The longstanding muscle imbalances, patterns of muscle substitution, and resulting joint and ligament strains often lead to degenerative arthritis. Total joint replacement can be performed but several special considerations are needed. Osteoporosis is common in the polio survivor because of the prolonged lack of muscle action on the bone. Joint contractures must be corrected at the time of surgery to prevent excessive forces on the artificial joint, which might lead to loosening. Weak muscles must be supported with the appropriate braces after surgery. The rehabilitation program will be longer than usual to regain joint motion and muscle function. Continuous passive motion devices and frequent joint range of motion must be used to gain joint mobility after surgery. Since the hip joint is difficult to brace, there must be at least grade 3 after surgery. Surgery can be expected to weaken the surrounding muscles. This must be taken into account before proceeding with total hip arthroplasty to prevent chronic dislocation. End of article.

More information from this Conference in the next newsletter. I hope that you have found the selection chosen informative. Please do help us by asking questions and giving us ideas for future issues.

Remember the story of your polio and how you manage your life can give others ideas how to make changes in theirs. It’s far easier to maybe try what someone else has found successful than accept being told that you must do this or that. Trying a store or tourist attraction scooter will give you an idea how much you can do using one.

Diagnosis PPS plus, plus. by Hilary Hallam

Just because we are Polio Survivors it does not mean that all our symptoms are PPS. It is important that you and those health professionals you see consider and test for other conditions.

Richard had been reporting increasing symptoms of pain, weakness and tremors for the last few years. He had fallen in the spring of 1999 and broken a bone in his hand requiring surgery. He had then to make the decision to return to wearing a full leg brace. Since then his symptoms had increased and medically the right things were not happening. I had met Ass. Professor Carol Vandenakker, Director of the University of Miami Department of Rehabilitation at the Atlanta PPS Conference in 1997 and the GINI Conference last June. We contacted her and asked if she would do a full Rehab Assessment at her Post Polio Clinic. She agreed and a date was fixed following the PPS Conference to give me an opportunity to see another PPS clinic working.

We arrived in Miami at 3p.m., breaking down on a flyover exit at junction 6 of the I95. Three lanes, hardshoulder with concrete wall and fast moving traffic. It felt like being in a nightmare. We rang the AAA. ‘It will be an hour minimum to reach you ma’am, can you please get out and lift the trucks hood’. I explained that we were within inches of the wall on

Email to Support Group in Six Weeks!

Carol Vincent from Indiana in the Summer and Florida in the Winter emailed the Lincolnshire Post Polio Network on December 13th 2000 asking about the relationship between neuropathy and post polio syndrome. I replied and as we were only about 20 miles apart we soon met and chatted about PPS. In the meantime Carol went into full swing looking for other polio survivors in the area and finding eight very quickly and was soon looking for premises for meetings.

Carol fixed the first meeting of the Southern Hillsborough PPS Group for the fourth Thursday in January with myself as guest speaker and publicised this on local radio and in the newspapers. She was soon inundated with callers. [56 Polio Survivors by the end of January 2001] The meeting was well attended in fact the room was full to bursting. She provided two packs of information, the Lincolnshire Post Polio Information Pack and an Orientation Pack with details of the next few meetings and speakers, lists of local specialists and other PPS leaflets, and information on who had contacted her. Meetings will be monthly on the fourth Thursday and the next meeting will focus on getting to know one another and talking about polio and how one feels about what is happening.

She provided the Tampa Tribune reporter with her story and both this and the report in the paper follow.

The Pronouncement by Carol Norris Vincent.

The doctor made her pronouncement. I had Post Polio Syndrome.

The diagnosis did not surprise me. I had been having pain and weakness for 10 years. But my recent physical accomplishment was bittersweet because of it. With my husband and six friends I had made the gruelling hike into and out of the Grand Canyon – something my siblings who knew me as a totally unathletic, could not fathom!

I reflected on the 52 years since I had awakened on my eighth birthday unable to move. As were so many others during the mid 1940’s, I was rushed to the hospital and placed in a huge ward full of children in crib-like iron beds.

Bits and pieces of memory flashed through my mind: The view of the lighted top of the KPL building out the hospital window, the harried nurses who flitted from one crisis to another. Mother and Daddy peering at me through the barred window from the outside, and that unforgettable moment when I could not breathe. I remember trying to holler for a nurse but no sound came out. The panic that not breathing caused haunts me to this day. The nurses rushed in and took me to a room with children in iron lungs in it. I was placed in one of these dreadful tomb-like machines that incessantly wheezed and clicked, using its bellows as lungs for the paralyzed patient. I was one of the fortunate ones who once again began breathing on my own so my stay in the lung was short. A month later, when I was free from paralysis, I went home where Mother massaged me daily with Sister Kenny’s new but still controversial treatments. Mother – a very strong willed woman – diligently massaged my back and legs until they returned to normal strength. I can still see the determination in her face and smell the warm, wet wool cloths that were applied to my body after the massaging was done. I hated the uncomfortable back brace I had to wear, it hurt and rubbed my skin raw. It was made of canvas and reinforced with rigid metal stays. To this day, I can see the face of one young doctor who was the antithesis of what I thought a doctor should be. While examining me, he bent over with a cigarette in his mouth and burned my eyebrow! Adding insult to injury he quipped to a colleague, ‘She looks like she’s wearing her Mother’s girdle.’ What a jerk! He was so incredibly insensitive, showed no compassion, and certainly was not behaving professionally. Mother’s vigorous massaging and the back brace soon helped me return to a normal life with no visible limp. Still, there were lingering signs that only I knew were a result of polio. I was awkward, uncoordinated, fell a lot, and could never do sit-ups. And then there was the claustrophobia – it came and went, but I functioned normally.

So I adjusted to myself: this was the person I was – and I forgot about polio. When I turned 40, I decided it was time to get fit – I took up aerobic dancing, jogged regularly, and later took up 4 mile daily walking.

But after a decade of this fitness effort, I found myself weaker than ever, no more co-ordinated, and with quirky aches and pains that could not be attributed to arthritis or just aging.

Still it took 10 years and numerous tests for the grim and painful truth to be revealed: the remnants of the disease that I thought I had left behind more than 50 years ago had permeated my body and would be with me the rest of my life. In reality, my fitness efforts and the Grand Canyon hike had taken a toll that I had not counted on – I had used up some of the remaining muscle that I had left.

Once the spectre of polio has been eradicated from the entire world, Post Polio Syndrome (PPS) eventually will no longer be around. Because of the discovery of the polio vaccine, polio was almost totally eradicated in America in the late 1950’s. America’s polio victims – more than 50% of whom now have some symptoms of PPS – are in their 50’s, 60’s and 70’s. When we are all gone, there won’t be a need for PPS specialists anymore. And no one will hear the pronouncement: you have Post Polio Syndrome.

The Tampa Tribune Community Focus Brandon serving all of

Southern and Eastern Hillsborough. Saturday January 20th 2001.

[Photograph] Carol Norris Vincent works on a computer from her Sun City Center Home to find others with Post Polio Syndrome and to organise a support group. [The Lincolnshire Post Polio Network WebSite is on the screen.]

Polio sufferer fights old foe, seeks to share.

Sun City Center – A woman struggling with Post Polio Syndrome hopes a support group will help others who find the childhood disease rearing its head again.

by Liz Bleau of the Tampa Tribune.

Carol Norris Vincent, now 62, recovered quickly from polio that paralyzed her when she was 8.

After only a day or two in an iron lung, she was breathing again on her own. Struck down with polio in the summer, she was back in school that fall, wearing a back brace.

She thought her recovery was complete. When she turned 40 she decided to get fit and took up aerobic dancing, jogged regularly and later walked four miles daily.

Ten years after she started her fitness routine, she found herself weak and with quirky aches and pains that could not be attributed to arthritis or aging. After numerous tests, she found out she has Post Polio Syndrome.

‘I learned the remnants of the disease that I thought I had left behind more than 50 years ago had permeated my body and would be with me the rest of my life’ she said.

The syndrome covers a wide range of new symptoms that affect polio patients later in life including pain, weakness, breathing and/or swallowing difficulties, sleep disorders, muscle twitching and fatigue. Research shows that those who were most affected by the polio virus at initial onset and who made the best recovery seem to have the worst Post Polio Syndrome symptoms.

Vincent belongs to a Post Polio Syndrome support group in Indiana. It meets only once a year and its main communication with members is through a newsletter.

She is trying to establish a Post Polio syndrome support group for Hillsborough County. The group’s first meeting will be from 10 to 11.30 a.m. Thursday at the United Methodist Church, 1210 Del Webb Blvd, W, Sun City Center.

Guest speaker for the meeting will be Hilary Hallam, founder and chairwoman of a Post Polio Support Group in England. That group has 300 members and about 700 people who subscribe to the updates of its WebSite (www.ott.zynet.co.uk/ polio/lincolnshire/)

Hallam, who is spending part of the winter in Palmetto, had polio when she was 5 and like Vincent thought she had made a full recovery.

‘I thought my polio was past tense,’ she said, until she slipped on a wet floor in 1988 and began to have a variety of medical problems. Until then she had been an active adult who taught swimming and was a lifeguard.

Now, she wears a full leg brace and travels in an electric scooter.

It took Hallam seven years to have her symptoms diagnosed as Post Polio Syndrome, and that was

done only after she did much of the research herself after hearing about it on a radio program.

‘A big part of the what we do in our support group and through the WebSite is help people assess themselves, Hallam said, ‘Sometimes they need to let their doctors know how to help in their medical assessment’. [see further information at the end of this piece directly opposite in the next column]

She gives the example of a recent seminar in Daytona Beach where she showed health professionals how she is able to respond well to simple motor tasks doctors often give their patients.

‘But when I am asked to pick up a cup with a pint of liquid in it, I can’t do it because its a pattern of movement that we PPS victims often have the most difficulty with,’ Hallam said.

Vincent learned too late that the fitness routine she as doing was not in her best interests. She hopes through the support group that other polio victims can avoid making the same mistake.

Research has shown that most polio survivors cannot replenish their muscle strength by increased exercise. Instead, they continue to lose what muscle strength they have. Any physical activity routine should be done with the help of a therapist.

Vincent suffers from cold feet, weakness, and an inability to stand for long periods of time.

‘I can’t stand long enough to cook a whole meal.’ Vincent said.

When she goes to a museum or a place where there will be a lot of walking, she uses a wheelchair.

Hallam will distribute information packets at the Sun City Center meeting that will tell people how to assess their condition and better manage their lives.

For more information about the meeting, contact Vincent at (813) 634 7670 or at wavncv@yahoo.com

Vincent says those planning to attend the meeting should let her know in advance so sufficient information packets can be prepared.

Liz Bleau covers south Hillsborough County and can be reached at (813) 633 4323 or ebleau@tampatrib.com

The Lincolnshire Post Polio Network Information Pack (which is continually updated) and talks that I give explain that we have to assess what we do in our daily lives. How do you do each action of daily living and has that changed from last year, five years ago, ten years ago. The change/s that have taken place are the important facts to tell those assessing you.

Manual Muscle Testing has continued to overgrade my ability. It has not picked up the following weaknesses that have occurred since 1988.

Left arm – I can lift a pint glass of liquid from a table but not bring it to my mouth without using a second hand, carry a bag with only a few light items in it for more than a few yards, type with that hand for more than half a minute unless I am palm resting on an ergonomic keyboard and even then I have to type and rest repeatedly, hold a fork in the normal way to keep a piece of meat still to cut it, hold a vegetable for peeling, etc.

Right arm, which is stronger but the wrist is now weak. I cannot peel vegetables towards me, I have to use a peeler than can peel away from me, and I cannot beat scrambled eggs with wrist action and now use elbow rotation.

Taking all these actions I can only do them in the way I have modified the action for a few repeats then the muscles fatigue. I have to pace and rest each action. Working in the kitchen I have to stand and lean against the work surface so that I can use both hands and at a level lower than the worktop usually in the sink area. I cannot work sitting on a perching stool as this is uncomfortable for my lower back and the angle of my arms is too high. I can only stand for a few minutes before resting. It is very frustrating not being able to cook a meal, bake a cake, etc like I used to. Now its having to purchase more expensive already prepared vegetables and salad, pre-cooked meats, etc. From Gourmet Cooking (ok well being honest reasonably cooked food) to ‘Ding’ food. Take it out of the freezer and pop it into the microwave and wait for the ‘Ding’.

All this use of energy has to be taken from the 10 energy tokens a day that we have available. It takes some working out but the pacing and resting allowing the polio muscles with limited functional ability to work, recover, and work again means that we can manage our lives better. What is hard for many of us is not being able to dust, hoover, decorate, garden, etc. like we used to do just a few years ago. Something we did not think would

happen to us for at least another thirty years.

Dr. Whiteley, neurologist, in mid 97 said ‘Tell me what post polio is in two minutes’. I replied, ‘It’s like being a torch with rechargeable batteries that are 45 years old. If I want light out of me during the day then I have to work out when and how much and decide when and how often to switch myself on and off. If I need light in the evening then I stay switched off as much as possible during the day. If I drain the batteries one day then they take two or three to regain their charge.’ It means a lot of planning but it works. I do overdo at times but I know that I will have to payback over the next few days to recoup. However, now its an informed decision and I know the consequences.

Appointments with health professionals have limited time and the fastest way to get over information is visual. Remember there is little time for lengthy reading of medical articles. Those of us on the internet will like me probably have printed off everything they found in the first few weeks – enough to wallpaper a house twice over! As I have said before in previous newsletters, walking in with a huge bundle of medical articles and a toilet roll length of symptoms is not a good way of approaching a health professional, especially one who may have only had a short lecture on polio and know little or nothing about its late effects.

It is a good idea to put yourself in their position, how would you like the information to be presented to you and in the time allotted?

The difference in what I used to do before the fall in 1988 – 5 part time jobs to 60+ hours a week, voluntary work, bringing up two kids, housework, gardening, decorating, lifeguarding, walking miles, and now is considerable. Photographs of me as a policewoman, doing judo, lifeguarding, etc. show how able I used to be.

If you have not already, why not fill out A Polio Time Line – see page 23 for a condensed sample of our charts – normally two pages with a chart table underneath each body so that you can list operations, symptoms, achievements at best recovery. This shows quickly and visually that something is happening and its more than age related.

Meeting with other polio survivors is fun.

I have attended six post polio conferences now and a few post polio group meetings and met with many polio survivors. I can assure you – and I know those who have attended the evening after our Annual General Meetings will agree – most of the time its fun, lots of laughter, lots of time to let off steam and tell people who do understand what you are talking about. A chance to share information, tips that have worked for you, a chance for carers to talk to each other. We will be doing the same this year in late September – information next newsletter. Why not think about joining us for the weekend. Those of you who have been before why not write and tell us what you thought of your visit. Mr. Hill at the last meeting said ‘Its great being part of the main group instead of the couple with a disability in the corner.’

I would be happy to visit areas of the country (UK) and do a talk during the summer months. To start the ball rolling I will be visiting with my parents in North Devon late April travelling from Lincoln via the M42 and M5. If you would like to host a meeting – and it could be in your house, or a nearby room/hall accessible to wheelchairs – then please contact me by email. Allow 2 hours for the presentation (Overhead Projector needed) question time and a chance to meet with others. A short break for a drink and a loo visit is also a good idea. If you wish we will provide you with a Poster and Press Release, and will have Information Packs, leaflets and handouts available for the meeting. A donation or raffle towards the cost of the handouts and travel expenses would be greatly appreciated.

Hilary Hallam, Founder and Chair, Lincolnshire Post Polio Network linpolio@legend.co.uk

Members this is your newsletter and we would love to receive more input from you. Stories, appropriate jokes, hints and tips, etc. Suggestions for items for future newsletter themes would be appreciated. We look forward to hearing from you.

the passenger side and there was no way I was going to attempt opening my door. Thankfully once the truck had cooled down it restarted and we got out of there as soon as there was a break in the traffic, drove down the other side of this flyover through a set of lights and there on the left was our hotel and the right the hospital. Relief! We pulled in, rang the AAA back, got a room next to where we had parked and the luggage unloaded for us. We crashed out and it was over three hours before we found the energy to eat some of the food in our cooler box. A very very stressful and very energy sapping experience!

Using our scooters and in short hops due to Richards arm weakness we went across the road to the Hospital and I had my first insight into a different health system. He signed in and had medical insurance cards photostatted and filled in what seemed like never ending forms. We then went through for a multidisciplinary appointment with Prof Vandenakker, her Physical Therapist, Occupational Therapist and Orthotist. She took down some basic facts – he had been diagnosed with PPS in 1991 – and then commenced examination discussing this with the rest of the team. The whole team were very impressed with the Polio Time Line and photographs which gave a far fuller picture. Looking at Richard at that moment in time with paralyzed left leg in full brace, heavy steel toe capped boots, very weak contracted left arm with tremors, weakening right arm with massive shoulder pain etc. and then seeing photos of him only a few years back working on a truck engine, attending pre 1840 rendevouz camps, blacksmithing, etc., learning that his trade was a bench jeweller and that he had only been wearing the brace again for eighteen months, gave them a totally different picture from their initial assessment.Mention polio and its assumed you have always been like you are now.

Prof. Vandenakker said that some of Richards reported symptoms were obviously not PPS and was surprised to hear that he had been reporting these symptoms for some years without result. She arranged an MRI of the brain that evening and came over to the clinic from her office the next day to give us her teams report on the previous day and the results of the MRI. Thankfully there was no tumour , no stroke, but as we suspected and had discussed with her the tremors were Parkinson like. It would take at least five more days to have the full tests necessary and knowing that we did not have the money to remain in the hotel she had researched and found us a top Parkinsons Neurologist, only 20 miles from where he lives. She explained that he would have to have a full neurological workup and diagnoses before anyone could finalise an assessment and provide a rehabilitation plan.

V. Daniel Kassicieh, D.O. is a board certified neurologist practising in Sarasota-Venice area with Neurological Associates. He is president of the Florida West Coast Parkinson Association and medical director of Neurological Associates which is designated a World Class Center of Excellence by the National Parkinson Foundation. Visit their WebSite <www.neuro-fl.com>. Taken from his article on Parkinson’s Disease. The Disorder and Current Therapy.

Historical background. Parkinsons Disease has been referred to in history as far back as the ancient Egyptians. Hieroglyphic writings make reference to the symptoms of the disease. [Editors note – also at least one drawing of a person with a thin shorter leg showing polio] There are references to Parkinson’s disease throughout historical literature including the Bible, writings of Galen-the-Great, a Greek physician of the second century, and in Shakespeare’s works.

In 1817 a British surgeon, James Parkinson, wrote an essay on The Shaking Palsy. In this paper he described the primary clinical symptoms of six patients affected with the disease. In the later 1800’s, this clinical syndrome of tremor, rigidity, and slowness of movements (bradykinesia) came to bear Dr. Parkinson’s name.

Cause – The underlying disease process for Parkinson’s disease was discovered in the 1950’s. It was found that a specific area of the brain known as the substantia nigra was affected. The substantia nigra is a dark pigmented area located in the brainstem. It contains specialized nerve cells (neurons) that produce a neurotransmitter, dopamine. Dopamine is responsible for allowing the brain to generate signals for smooth, well regulated motor (muscle) function. In patients with Parkinson’s disease, the dopamine producing neurons slowly die off. This results in a dopamine shortage in the brain. Patients who develop symptoms of Parkinson’s disease have already lost 80 percent of the dopamine producing neurons. Despite extensive clinical research, the cause for the loss of these dopaminecontaining neurons in the substantia nigra remains a medical mystery.

Clinical signs and symptoms – The primary clinical features of Parkinson’s Disease include, rigidity, bradykinesia (slowness of movement), postural instability (loss of balance) and tremor. [end excerpt] Note the fact that the substantia nigra is also affected by the polio virus.

Dr. Kassicieh prescribed the Parkinsons drug Sinemet (Carbidopa-Levodopa) and Artane (trihexyphenidyl) with some improvement. There are no tests to see if you have Parkinsons, it is a clinical diagnosis and trying the drugs to see if they work.

With reference to the Polio Time Line and assessment we had tabulated he ordered an MRI of the shoulder and referral to a shoulder specialist orthopaedic

surgeon.

On 31st January Dr. Schofield told him the MRI showed tears in the Rotator Cuff and scheduled arthroscopic repair on 20th February. We were surprised to learn that for six weeks he cannot use that arm at all – although it can be passively moved by others. For another four and a half months he can use his arm lifting no more than a mug of coffee and no weight bearing with cane or pushing up from chair till after that. We are aware from information we have that for a polio survivor full recovery can take up to a year. As his left arm has little function it is going to be very tough and disabling for some time. Speaking with Dr. Zilioli, an Orthopaedic Surgeon and Polio Survivor from Florida on the phone last night he said that the one good aspect was that no-one would have to spend time explaining to us all the inns and outs of the surgery, anaesthetic and recovery. He was pleased to hear that we were already putting changes into place in the home to make life easier and going to practice not using the right arm before the operation. Dr. Zilioli explained that the operation would provide relief of pain and provided he was careful not to injure his shoulder during recovery and work with a therapist to ensure that he kept all his working parts still working then the operation would be a success. Frustration he said would be the biggest issue.

Dr. Kassacieh also referred him to an Orthotist. Richard has arthrodesed ankles and floppy toes and combining that with his weak arms getting dressed is a long drawn out procedure taking about 70 minutes. To put his boot on his foot, sitting, he lifts his left leg up and turns it round so that his foot is sole uppermost and facing left! (his left leg is totally paralysed and he can therefore turn his leg at the hip like this). With the boot upside down as well it is a slow, delicate and exhausting procedure to get the foot in the shoe without the toes curling under and it cannot be done by anyone else. This is not going to be possible after the operation . Boots that open right to the toes were the answer, but we were horrified to find out that his medical insurance Medicare only allows $48 and pays 80% of that for the one boot that fits the calliper. No allowance at all for the other boot regardless of the fact that this foot is also arthrodesed and the boot contains a special shaped insert. The boots were $172. Alan Ross of Suncoast Prosthetics and Orthotics explained that all Insurance’s are different and some things are covered and some are not and some allowances are less than the cost of the materials with no amount for labour. However, Alan said if we had an old built up shoe he make the front open to the toes, and put a calliper plate in the sole to tide him over till he is well into recovery and able to put his own shoes on again.

We often complain about the NHS, the long delays in getting appointments, tests, treatment, operations, etc. When we are ill we do not have to stop first and think can I afford the percentage of the bill to see my GP and other consultants, have the tests, operations, get aids, pay for therapy, buy the drugs prescribed. There is no prescription set amount like in the U.K. you have to pay the cost of the drugs. Living on benefits, especially if you live alone with no other salary coming in, means do I visit the doctor or eat?

This has been an insight for me. There appears to be a doctor for each part of your anatomy and you have to ring round to see who will see you and will they take your insurance. If you can’t afford the co-pay (20%) are they prepared to waive that. Every time I heard the phrase ‘Oh don’t worry we can arrange a payment plan for you of say $10 a month.’ You cannot afford to see many health professionals before you would be on bread and water for life. There is no mobility allowance. If you are prescribed an electric wheelchair or scooter for use in your house there is nothing towards transporting this.There is also nothing for dental treatment or glasses and your benefits are assessed on your previous salary.

Whichever country you live in it is still very frustrating, depressing, and very very stressful.

IT IS NOT EASY BEING A CARER TO A POLIO SURVIVOR

AND ITS NOT EASY HAVING TO ACCEPT A CARERS HELP.

Many of you might think it strange for a Polio Survivor to be writing this article but as you read on you will see how this came about.

A few months back I spent over 24 hours with Sylvia Dymond in Hampshire and saw first hand what it is like to have a professional carer come into your life at different times in the day. This change from doing it yourself to having to have and watch someone do for you in your home things that a few years ago you were doing for yourself is not easy to come to terms with. It was something you realised might have to happen when you were really old, thirty years time perhaps, but not now! Sylvia and I discussed this after they had gone and we agreed that we needed to share this in a newsletter and ask you for your thoughts.

I got home and I talked with my daughter and others about what its like to be a carer. ‘You are a nightmare at times to live with,’ said my daughter, ‘you are not consistent, you know you should not overdo but you still do sometimes and then complain you are tired, but what is worse is that you keep trying to tell me how to do things step by step’. What did I answer, ‘I need to talk, I might not be able to do it myself now but I need to keep control’. ‘Yes,’ said my daughter, ‘but we have got to compromise on this, after all I am nearly 25 and perfectly capable of doing what you ask without you telling me in fine detail’. I still felt threatened by this and felt that it virtually meant that I could not even speak about what needed to be done. At this time I was unable to see it from her point of view.

Let me go back a bit. Many of us are in our 40’s and 50’s expecting to be working till retirement, and then doing all those wonderful things that retired folks do. Not only do we have to cope with our new symptoms but with changing jobs, or going part time, or giving up work altogether. Some of what we had planned for the rest of our working and retired lives is not now going to be possible. We are not prepared for it mentally and for many not financially either and no way of ever making money again.

Every loss that we experience we go through the stages of grief. Every little problem can open the whole box of PPS and what its doing to our lives. Whilst we struggle to cope with symptoms and are not getting the correct medical support that we need we are often told that we are being lazy, we could do more if we tried harder, etc. We know we are not being lazy, because we have always pushed ourselves to the limit and beyond for years so why are we finding tasks that were easy before much more difficult. It really is a worry and we can react in all sorts of different ways. We try to ignore it, we push ourselves harder and then collapse exhausted in a chair, we get depressed by it, we get angry and annoyed at even silly things, burst into tears, lose confidence, all sorts of reactions whilst we are in this state of limbo not knowing or understanding what is happening. What must it be like living with someone who is like this?

Then we find PPS exists and at last we have a possible reason for some of this and now we will get medical help. The relief is short lived as most of us have found that far from being easy this is an uphill struggle with many setbacks which impact on the rest of our daily life. We get quizzically looked at down noses over half glasses, we see a look of ‘oh its her again’, we get told we are imagining all this, or they are sure its not as bad as we make out, some get told that they have checked and there is no such thing as PPS, or maybe you didn’t have polio, a new one is that you deteriorate for eight years and then you plateau and just age. We had different damage, different recovery, live different lives, there are so many variables that there can be no set pattern.

Its very depressing when you know something is happening, that you are declining in daily functioning like being 30 to 40 years older than your actual age. Unless there is a multi disciplinary PPS clinic that you can get to, your symptoms seem to get shared out between many different health professionals with no-one case managing you. No-one but you is seeing and feeling the whole picture.

We know we can have every other condition instead of or as well as late effects of polio or PPS or whatever we call it, but if we do not get assessed properly by specialists who really do understand polio and its late effects other conditions could easily get missed. Its just as bad to not get diagnosed with PPS as it is to be told ‘oh you had polio then its PPS when it might not be.

Often a diagnosis is given and then test results show its not that and you move on to another department, another diagnosis. In the UK with our Free Health Service this often means waiting again for an appointment sometimes for many

months, even a year or more. If we have had to go on benefits then this waiting and lack of a definitive medical report impacts on benefit applications, and many are having to fight appeals and tribunals where our situation is not understood. In the States its a totally different system and although you can get to see specialists within a couple of weeks you have to ring round and find who will see you. Although there are good PPS Clinics in some parts of the States its a huge country and many do not have the insurance or funds to travel and pay for this.

So to those of you who care for us, or live with us, friends and family, it is not an easy time. We don’t like what is happening, we don’t want it to happen, but it is and the one thing we feel we must do is keep control. The stress of all this gets us down and we probably don’t stop to think how our carers and family are feeling about what is happening, after all they are not going through this. But we now realise you are. One day you offer to help and we brush you off quite brusquely, and the next day we are doing some more of the same task and what do we do, we say well don’t just stand there, can’t you give me a hand. Nightmare… I think maybe my daughter was right.

Meeting with Richard last May, who also has PPS – having corresponded via the Internet for two and a half years – and driving to St.Louis for the GINI conference meant that when I was driving I was in control and whilst I was happy and grateful for the directions and which lane etc, I did not like things like seeing him look at the speedo to ensure I was not speeding. Looking at it from his point of view it was his truck and he really wanted to be driving but as we both have PPS we had to change drivers – pacing and resting. This has happened in lots of other aspects of our daily life and we keep changing roles. Together we still do not make one whole working person able to do all that is necessary.

The funny part about this is about six weeks ago when I was helping him do something and it was not easy and he was instructing me and I said exactly what my daughter had said to me, ‘I don’t need you to tell me how to do this step by step, I am not stupid’ and he said ‘but I want to do it and can’t but for goodness sake let me be in control’. We both stopped and laughed and were able to tell each other how we really felt about all this. Now if we get frustrated by something that’s been said we think not just about that particular point but the whole day and what else is part of this reaction. If the other person is having a bad day then we can let it go then but if we need to talk about it later we can. Its certainly given us both a much greater understanding of the situation and ability to compromise with far less stress. Telling my daughter over the phone what happened allowed her to explain other things that were bugging her and we were able to talk easily about this instead of getting angry.

When we are caring we can’t second guess what your needs are, you have to plan ahead and realise that we cannot just stop what we are doing immediately. We don’t mind helping, we want to help but we need as much warning as possible so we can leave what we are doing at an appropriate point.

If possible each of us should try and put ourselves in the others role and think how we would like this situation to occur to us.

Another problem that came to light at Sylvia’s and many times afterwards was that when we have been alone for some time and someone comes home we are ready to talk, we have stored up lots to say and we don’t want interrupting in case we forget something. We forget that the person coming in is working as our carer and is probably limited by time, or is a family member who has returned from work and who needs to rest themselves. Carers we need to talk and you need to say something like ‘let me get the dinner started’, or ‘lets get you into the bath, and then we can have a chat’. Family you need to say something like ‘let me get changed and we can chat in half an hour.’ Likewise for the Polio Survivor if there is something important that needs to be said immediately they arrive then you need to say, so and so happened and we really need to talk about it as soon as you have a moment. Write down what you want to say so that when the time comes you don’t forget anything.

Plan ahead. Maybe you can pick a day each week to add to a calendar the have to do’s and the want to do’s. E.g. if he wants to play golf on Thursday you know that shopping that day is out, and likewise if you have a doctors appointment he knows he will have to fit golf in another day. Seems easy but we found it took some time to get used to this change in lifestyle but its working well now.

Hilary Hallam <linpolio@legend.co.uk>

I received this email just after finishing this article. Margaret E. Davies from Arkansas, USA wrote…

When all these changes first started, I had a ruff

time and I would have days when I would be watching TV and see a woman wearing high heel shoes (of all things!) and I would get so angry! I would cry, scream and curse at anyone who got in front of me. Now I have never wanted to hurt my family, so I learned to tell them, “you have done nothing wrong, I am just having a bad day.”

At that time, I was sure this would “come to pass”. One day I realized, This is here to stay!!!! I started working my way thru it. I wish I could say, and it just vanished. But it did not. It has really improved and now I have finally reached the point that I can look back on my pre PPS life and smile at the good memories. I used to try and block them out. I would tell my family “that life is dead and gone!”

I give my family a huge gold star for coping with me. I think that kind of coping is called “love”.

<mardavis@CSWNET.COM>

Letters to the LincPIN from polio survivors, family members, friends, carers, and medical professionals, that tell your side of the story will be gratefully received. We need to make informed decisions about the rest of our lives and the more information we have to make that decision on the easier it is.

Nearly every polio survivor that contacts us says that its so good to talk to someone who has polio and who understands what we are talking about. One way that those of us who are on the Internet can do this is by joining a discussion list. We have our own members list and if you are not subscribed and want to be then please email us. I will explain for those without computers or the internet how this works. You can subscribe to many lists on many different subjects. You get mail from this service either one a day with all mail on it or singly from each person who has written that day. If you want to reply to a message then you can reply directly to the person who sent it and/or to the list so everyone can read your reply. In this way many subjects get discussed. You find new friends and correspond privately, sharing photographs and much much more than just polio. Come home from a disastrous medical appointment and tell the list what happened, you get it off your chest, you get replies often the first can be within minutes, and it really does help relieve the stress. Some years back Dr. Bruno offered me his help – see Letter to a Polio Survivor in our Library – and told me to let him know how I got on. I got home very distressed from the disastrous appointment where despite prior knowledge of what we were going to discuss and the offer of the consultant to come and do this, I was turned down again and again and even my having had polio was questioned. I typed out what had happened and sent it. I sat back relieved that I had got this off my chest but was still very angry. Just before logging off in only nine minutes there was a reply. Dr. Bruno does not mince words and his reply made me laugh so much and there could have been no better medicine for me at that time.

I have now been to other PPS group meetings and met with many polio survivors and meeting up really does help. Yesterday we visited with Paul and Alison Elrod in Brandon, Florida. We learned much from each other and had many laughs. Paul has made lightweight aluminium poles with attachments to lift the shower head up and down; screw into the tap controls so he can turn the water on and off. A railroad tool for packing bearings – looks like a poker with a right angled crook on it and a round loop on the other for holding – tucks down inside the footrest backstrap of his wheelchair and is handy for lifting footrests up and down and many other unexpected uses!. His toilet is built on a tiled brick area and then he put wooden blocks under the toilet seat and shim for the hinge for exact height adjustment. He told us about his life and being lifted up and down stairs to school and college and much much more. We have asked him to write his story as there is so much we can learn from reading it, and have some great laughs on the way.

Even if you have a computer how about asking us which other members are near to you and meeting with them over coffee, or ringing each other now and then, or even writing to someone if they are too far away for a phone call. A few are already doing this. It really does help to talk. Why not ask me to do a talk in your area so that you can meet with others?

An Internet list – the first I joined – the St. Johns Polio List has been going for quite a few years and there are many polio survivors subscribed to this from around the world. That is how I learned about PPS in the first place, and met many who are now my friends. Chris Salter and I met on this list and that meeting has proved invaluable with the great WebSite that he provides for us.

It is also with much sadness that I tell you that Tony Miles – a Life Member – has died. I met Tony on a few occasions over the last few years and talked with him on the phone, the last time only a couple of months back. Tony I hope that you meet up with Barbara Casson – a Polio Survivor subscriber to the St. Johns Polio list who ‘left this life to soar among her beloved stars on January 28th 2001’. The back page contains a poem she wrote. To both families our condolences in your loss.

Example of a Polio Time Line – Basic Information. Condensed from two pages – Charts in Information Packs or Separately.

0 – 5 5 (May 52) 6 – 15 16 – 41

42 – 47 48 – 50 51 – 52 53

At the age of 5 I caught polio and had waist down paralysis. At ages 12/13 I had multiple tendon transplants. From then to 36 years post polio I was fit, active and working 60+ hours a week, Coastal Lifeguard voluntarily May

to September weekends, bringing up two children, gardening, decorating, driving a manual car, etc. Employed as a Secretary, Policewoman, Lifeguard, Swimming Teacher, had completed a 39 mile walk, passed to Orange Belt in Judo, Distinction in Life-saving, Advanced Swimming and Lifeguard Teacher.

From a fall in October 1988, slid on wet patch on floor in school I had increasing symptoms starting in left arm, then left eye, started falling for no reason but was carrying items, gait got worse, left leg lifted for clutch, etc.

The main symptom are weakness and functional decline and despite being prescribed exercise and working hard at this I continued to decline. Found PPS existed Nov 95. Diagnosed PPS December 1997.

Add photographs, pre polio, with polio, a couple at best recovery, and a couple now.

Input information under each body. Operations, symptoms etc. Under best recovery record achievements.

Remembering Barbara Casson, Polio Survivor, Star Gazer and Good Friend to all she met in real life and on the Internet.

Barbara was a member of the St. Johns Polio List and many others. She also spent many hours Star Gazing and wrote the following poem in 1999. She sent this to Linda in California at that time and remembering it Linda has posted this on her WebSite in her memory. Taking this theme her internet friends have got together and Ellen has organised the naming of a Star in her memory and the framed certificate has been sent to her family. The certificate states… Let it be known to all that the Star herein designated in the Smithsonian Astrophysical Star Catalogue as ‘7499 Draco’ and residing within the boundaries of the constellation Draco ‘The Dragon’ is hereby named in memory of ‘Moondoggy Barb’. The stars astrophysical verified position is Right Ascension 12h05m12.2s – Declination 75’27’16 Type. G9111 Magnitude 7.5. Distance unknown.

My deepest desire is to be out in deepest, darkest space floating effortlessly, Watching the glittering of the stars

Being sucked into a black hole,

And then being aware of the speck of light at the end of the blackness. As I emerge through the opening of light,

I am now in a whole new dimension of life which I find so very curious, I’m not physical anymore and yet I see myself and others.

How is that possible?

So many things to learn and wonder about.

I feel such incredible joy in being. How else can I describe it?

I am amazed at others who surround me And reach out to me in total peace and love. ~ Barbara Casson 1999 ~

Barbara left this life to soar among her beloved stars on January 28, 2001

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – Requests for Information Packs, Leaflets, copies of articles Hon. Sec. Wendy Grimmitt <CWGrimmitt@aol.com>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – April 2001

Articles for publication by March 20th – Publication date 5.4.2001 Founder & Chair – Hilary Hallam <linpolio@legend.co.uk>

Vice Chair – Janice Eary <janice.eary@hotmail.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Honorary Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com> Committee Members – Phil Bilton, John Eary, Ted Hutchinson, Jennifer McGowan.

Linc Pin Volume 3 Issue 3 Read More »

Linc Pin Volume 3 Issue 2

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 2 – December 2000

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

The Lincolnshire Post-Polio Network wish All our Members and their Families All our Contributors and Readers Seasons Greetings and A Happy New Year – 2001

Lincoln has far more places to visit than you might have first imagined.

Top of most people’s itinerary is the Cathedral. A truly inspiring and majestic building, commenced in 1072, but largely rebuilt in the 12th and 13th Centuries in English Gothic style. The vast nave with its limestone and marble columns, vaulted roof, and colourful stained glass windows is an exhilarating sight; whilst in St Hugh’s Choir, the intricately carved wooden stalls offer an intimate setting for the daily church services, led by the resident Cathedral Choir. In the Angel Choir see the shrine of St Hugh, and locate the mischievous Lincoln Imp. An innocuous stone carving much featured in local folklore.

Sharing the Cathedral’s hilltop setting is Lincoln Castle. Built on the site of the former Roman fortress, this defensive stronghold has long been the centre of the City’s judicial and penal systems. The crown court still sits here, upholding the principals of justice established by Magna Carta, and Lincoln’s original copy of this famous document, sealed by King John at Runnymede in 1215, is the centrepiece of a special exhibition. You can also visit the Castle’s unique prison chapel with its coffin like pews, tour the towers and dungeons, and walk on the walls to enjoy terrific views across the City.

Lincoln boasts some fascinating museums. These include the Museum of Lincolnshire Life, which depicts domestic, social and industrial life in the County over the past two hundred years, with the emphasis on authentic room re-creations and hands on activity days.

CONTENTS

Contents and

First Smell of the Holidays by Linda Booth, Page 2

Editorial – Page 3

Report on Post-Polio Syndrome – A Critical Review ST. Thomas’ Hosptial, October 26th 2000

Page 4

Report on South Lincolnshire Healthcare NHS Trust Disability Awarenss Day – 2nd November 2000 Page 5

The Fine Art of Pacing by Linda VanAken

with additional information from Hilary and Marti Pages 6 – 7

PPS Survey – UK responses wanted

Page 7

I personally opted for a permanent trach. The best decision I ever made by Annette Hanna Page 8

Explain God and Who says Christians ain’t Funny

Page 9

Post-Polio Down Under by Dr. Mary Westbrook

Pages 10 – 13

Lincolnshire Post-Polio Network Polo Shirts with embroidered Logo

Ambroise UK Limited

Page 13

Polio Survivors, Drugs and Anaesthesia

Pages 14 – 15

Hints Tips and Bits from PPSers world-wide

Pages 16 – 19 and 23

Updating your Childhood by Lloyd J. Thomas PhD page 20

Taking Time Out by Virginia Holland Page 21

Conference Talk by Tony Gould

Page 22 – 23

Ideas for Christmas Contact Information page 24



First Smell of the Holidays

It was getting near Thanksgiving and the time to think about making fruit cakes for Christmas was up on us. They need a long time to mature and become delicious so they were always baked early in November. As I got off the school bus one day, the air had a cool crispy breeze and the sky was a creamy blue with marshmallow clouds. It was cold enough so you could see your breath in front of your face. The maple tree in the front yard was showing all of its fall splendor with its red, yellow and orange leaves floating above my head. This was my favorite time of the year.

I always knew when my mom and grandma would be getting ready to bake. As I reached the kitchen door the smell of cinnamon, raisins, dates and spices were in the air. These were the smells of the holiday season to come. The kitchen felt so warm and inviting with its golden mahogany cabinets and the multi burgundy braided rug that lay under the table. An oil painting that hung on the wall, with its bowl of red apples and oranges seemed like it was ready to become part of the baking.

Grandma was sitting at the table with pecans and black walnuts in front of her. She was picking out pieces of shells and getting the nuts ready to put in the fruit cakes. There were candied cherries, pineapple, oranges and apples on the table that had been cut up to put in the cakes. The kitchen always smelled of ginger and spices, Red Jonathan apples were on the cabinet looking even better than the ones in the painting. The golden brown cakes with the big red cherries and raisins were cooling on the rakes. Mom was mixing batter for another cake.

Mom had the radio playing “Home for the Holidays,” softly in the background. Taffy, my little Chihuahua mix, lay on her rug watching with big brown eyes and a wishful look hoping that someone would drop just one bite for her. She wagged her tail excitedly as I looked at her and smiled.

Mom sliced one of the fruit cakes for us to taste. The sweet, soft cake was warm as I put it in my mouth. The taste of the cherries, dates, and raisins mixed together had such a scrumptious burst of flavor. Mom put a glass of milk in front of me, it was creamy and icy cold as it hit my warm throat.

We then took the nuts that Grandma had hulled and put them and half cherries on each cake to make them so very pretty and inviting. These would be gifts for family and friends. Everyone looked forward to Mom’s fruit cakes with great anticipation, and these were the best she had ever made.

Linda S. Booth, Springfield, Misssouri e-mail: lsbooth@swbell.net

Editorial by Hilary Hallam

Seasons Greetings to all our Members, Families and Friends. I hope you enjoy the content, a mix of information, great tips to help us and a few funnies.

At our AGM it was agreed that the post of Vice Chair would be decided by the Committee. I am pleased to tell you that Janice Eary is now in post. Janice has worked for a Charity in the past and her experience will be invaluable to us. She writes ‘If I had known what would happen, when I tentatively put my hand up at the A.G.M.I think I would just have sat on it. I didn’t know then about Hilary’s powers of persuasion. Anyway here I am Vice-Chair, with responsibility for dealing with the Charity Commission,The National Lottery, and The Long-Term Medical Conditions Alliance. I will do my best and hope you will all be patient with me while I find my feet.’ Chris Salter remains as Vice Chair with specific responsibility for the WebSite, without whose high quality work we would not have progressed to the level we have. Thankyou Chris. The Committee are gradually taking on the responsibility of co-ordinating various tasks which will give me more time for research and giving talks. Wendy Grimmitt is the new Secretary and Frank her husband the Treasurer. All membership, requests for leaflets and information packs to now go direct to them. Address on back page.

We receive requests for help from Lincolnshire, the UK and across the World. Last week a phone call from Reno, Nevada. The story is the same. It does not seem to matter which country you live in, if you do not have a PPS clinic or recognised PPS specialist in your area then you continually do the rounds of hospital departments getting absolutely nowhere. Such a waste of money. Despite the statement from the Dept. of Health on 25th September about PPS, we continue to have calls saying my doctor told me it does not exist and the latest ‘there is no reason why you cannot continue working for years.’ Where do we get the most help to manage our condition? From other Polio Survivors. Hints tips and bits and requests for help in this newsletter. Send yours to us for the next issue.

By the time you read this I will have winged my way Stateside again. I have to thank my family and PPS friends in Florida for their continued support without which this would not be possible. December 8th to 10th will find me in Daytona Beach for the East Coast Florida PPS Conference. A chance to meet PPS specialists old and new and to discuss with them the problems Polio Survivors are having with physical assessment. We have now had confirmed that what we have been saying for eighteen months, that assessing us using Manual Muscle Testing in a single discipline assessment most often does not confirm the functional decline that we are reporting. We now know that a limitation of Manual Muscle Testing is that it does NOT examine the ability of a muscle to participate in a functional movement pattern. For instance I have been reporting left arm weakness since 1988 that has increased. I am asked, ‘Grip my hand, pull against me, push against me’ and I can do that on a one off basis and I am told that my upper body is strong. However, I can lift a teapot but not pour it out, I cannot carry even something light for more than a few yards, etc. Had I been assessed in the first instance by a physio and OT actually doing the tasks I reported difficulties with then all this would have been seen. A saving on NHS money, appeals for benefits, stress on me, and a reduction on the speed of deterioration as they would have been advising me instead of me having to search for the information.

I am also visiting Dr. Carol Vandenakker at the University of Miami PPS Clinic later that week and will be finding out what is involved in assessment, how much it costs and what treatment is offered.

This trip I will also be taking a holiday break – in touch daily through my email – although living on benefits means we do not have money for more than our daily living. The alterations agreed by Social Services last January will be starting just before Xmas. They are going to extend the room I am sleeping in so that there is room for wardrobes, put heating in here and the rest of the bathroom/utility extension, and provide disabled access at the front of the house. I am already struggling to cope with living in this cold area and relieved that I won’t have to be here whilst this work is done – my daughter also needs a break and her life will be much easier if I am not around whilst the work is being done.

The DHSS sent me a 5th Anniversary Present of my finding that PPS existed. How wonderful, till you find out that it was a fourth Incapacity for Work Questionnaire. I am going to admit, I burst into tears, to show that whilst I can deal with others problems when it comes to my own its not so easy. It does not matter what small thing happens to us it opens up the whole can of worms. When you do this you are not alone. I regrouped!, and phoned the local DHSS Office to find that Post-Polio Syndrome is not on the exemption or exemption check with GP list, so they will continue winging their way to us till we get this altered. Needless to say another letter went post haste to the DHSS. The last thing we want is the stress of seeing in black and white the difference between what we could do last time they sent us one and now.

December and January contact information.

Whilst I am away the LincsPPN line – 01522 888601 – will take messages collected daily, plus give a message with the following numbers. Janice Eary Daytime – 01663 743870 and Wendy and Frank Evenings – 01400 282546.

POLIO PEN/EMAIL/PHONE PALS

We have members and swap newsletters with other PPS groups around the world if anyone would like a polio penpal contact Wendy. Plus now there are cheap rate calls to other countries you can ring now and then and ‘hear your new pals accent’.

Post Polio Syndrome A Critical Review St. Thomas’ Hospital, October 26th 2000

I attended the above seminar and was able to discuss with some of the health professionals what I believe is the main stumbling block in the UK. The use of single action Manual Muscle Testing which does not confirm the functional decline we are reporting. If only we all had the opportunity of the multidisciplinary approach given to the 27 polio survivors who took part in the recent St. Thomas’ PPS research project.

Tony Gould – Author of ‘A Summer Plague’ – Conference Talk pages 22 – 23

Some of the statements made by the speakers were:-

We do not know how she is walking. We do, we understand substitution of muscles and using other muscles of our body to assist in our doing actions. We learnt this when we had polio and we are using it again. One of our problems may be that we wait too long before we complain about our problems. For instance, we don’t go to the doctor with an aching calf, then knee then thigh, then hip. We wait till our lower back is also affected. The doctor looks at the back as the problem – unless we tell them the course the pain took. My leg pain was from a ‘dropped again foot’.

Arm problems – rotator cuff, carpal tunnel, etc. are not related to polio. If we had not had polio, we would not have had to use our arms to support weak legs, to use canes, crutches, wheelchairs. We are unlikely to have the level of problems we do now if we had not had to do this, so I disagree and say that our problems are related to our polio. The statement can have implications when we are sent for treatments and with Benefits applications, appeals and Tribunal reports. Saying that it is not related means that other health professionals discount that area of our body as being part of our new weakness and functional decline, part of our ‘PPS’.

The recent research project found that the Chronic Fatigue Level dropped but we are not sure why, maybe its the antidepressants prescribed. Because doctors do not see us before we get new problems they cannot compare then and now. What had not been realised was that by giving patients a full multi discipline assessment, teaching pacing and resting, issuing aids, being able to socialise with other polio survivors for probably the first time and being able to speak those inner thoughts that we all have, that this would allow them to accept a change in lifestyle, manage their days and weeks better with a drop in fatigue levels.

Professor Windebank talked about his research project at the Mayo Clinic in Rochdale, Minnesota published in Neurology Jan 1966. They must be the only area in the world that retains virtually all their patients records from 1907. There were only 4 clinical reports missing for the 300+ polio survivors. To do their research they needed 50 people. They started at the top of the list and contacted people in turn till they had found 50 that still lived within a ten mile radius of the hospital. Here lies the problem that was missed by many health professionals. The research whilst important was not representative of the polio population as a whole. As a percentage of any normal population how many people still live within a ten mile radius of their childhood?

I asked about the type of sports these 50 did and it was ‘one played some golf.’ I asked ‘No 5th Dans in Karate, marathon runners, professional sportsmen, lifeguards, rugby referee’s and the answer was ‘these people had polio!’. I replied ‘so did the people I am talking about and they had considerable initial paralysis.’ What has not been realised by many specialists – because we are only now coming out of the woodwork – is how many of us recovered to these levels from our polio. It appears to be assumed that if you don’t have a thin limb, callipers or some easily visible external sign of your polio then you must have only had a mild case. They do not expect you to say you were paralysed, in an iron lung, wore body corsets, leg and body braces, etc.

Following this in the UK was the article in the Lancet, ‘Study throws doubt on PPS.’ The rebuttals to this research article are published on our WebSite ‘The Mayo, the Lancet and the Revolting Polios’ by Helena Edwards of the Leicestershire Post-Polio Network.

Even those who have visibly lived with their polio all their lives have achieved way beyond what was expected of them. Possibly the ‘not as great a difference’ between their level of ability at best recovery and new symptoms compared with those of us who recovered to looking normal is relevant. This was reflected in the scores listed in their research which were far lower than most polio survivors I have met including myself. Research needs to take in a wider representation of the polio population. All who caught polio in their earlier lives and who had damage to their central nervous system and who are now having or could have problems unrelated to age in the future. It also needs to happen now before too many more polio survivors deteriorate at an unnecessary fast rate due to the lack of knowledge and experience of polio in its first instance and the awareness of this latter stage. I made some excellent contacts and look forward to further meetings with them in 2001.

I stayed with Tony Meladio in south London the nights either side of the seminar, with Ken Spooner stopping off and driving my car with scooter to and from St. Thomas’, so that I had the energy to attend. I then travelled across country visiting with other polio survivors. I learned from being with Sylvia Dymond what its like to have Care coming in to help you – an article on this for the next newsletter. I then visited Dr. Emamy who is now looking at some medical articles for us. Then onto south Devon to stay

overnight with Peter Norman and his wife in Budleigh Salterton – a seaside of my childhood. My thanks to all for their hospitality and openness in sharing their experiences and polio lives to help our research.

On the way home I met up with Wendy and Frank Grimmitt and we attended the South Lincolnshire Healthcare NHS Trust – Specialist Services Department Equipment Awareness Day. Of note were;-

Helping Hands Shoe Helper lengths 26” or 32” a helping hand but with a long shoe horn attached so that you can pick up the shoe and then slide your foot in easily. Another item was a Soxon Sock/Stocking Aid. Difficult to describe, but here goes, its made of a foot long U shaped foam covered metal frame. This is then covered by a soft fleece material. It looks like an upturned bicycle saddle. The top ends of the U nearly touch so you can easily put a sock or stocking on this. You then drop this to the floor, put your foot on the back 2/3rds of it and using the long tapes with loops pull up and lo and behold my popsocks were on.

Another company was Mountway with two items that impressed me. The first was the Mountway Solo Toilet Lift. It is a new concept – slimline and battery operated, it is both neat and discreet. Specially designed to lift you on and off the toilet, it blends into its surroundings, causing no embarrassment to you or any member of your family. This allows you to retain independence and dignity. That night I woke and chuckled to myself, I had visions of Father Christmas sitting on this reading the paper. A second set of controls were in the kitchen, and Mother Christmas is looking at the clock. Ten minutes have passed and she reaches for the controls calling out ‘You won’t get all the presents delivered if you don’t leave now.’ Another item was a pillow lift. At the touch of a button the Serena Pillow Lift will help achieve this, by gently lifting and lowering you into the ideal position for sleeping, resting, reading and watching television – as well as providing help for getting in and out of bed. Just place on the bed and plug it in. So wherever you go your pillow lift can be installed in seconds.

Another company was Welland Medical who displayed the usual stools/shower and pushing aids. The type of shower stool I need – a comfortable toilet seat that is level on top with adjustable legs is not manufactured. I need it high for me, but my visitors with shorter legs need it lower. My toilet is built on a tiled building block, great for me, but shorter legged folks complain their feet swing in the breeze. One visitor suggested an ‘adult’ step. They are going to make me one to try.

I talked with many companies about the way their items are presented. Most catalogues and leaflets show equipment that shouts ‘This is for the elderly and disabled’. So many people both handicapped and elderly say ‘I am not disabled enough or old enough to use that yet’ when in fact it would make their lives much easier and more comfortable. What we want are brochures and leaflets that make us read on – the Mountway brochures are excellent – that tell us what this equipment can do. Then we can decide if it might help us. We also would like to see more modern designs, colours.

If you have found any equipment, alternative treatment, hints or tips that help you then why not write and tell us. Not everything will help everyone, we are all aware of that, but I know many have benefited from some of the stories. Since the LincPIN where I told of my 5mg of amitryptaline at night I have heard from four polio survivors whose GP’s agreed for them to try the same and all report a ‘good nights sleep now’. I need to mention that this is half the smallest tablet made and it is the right dose, FIVE mg.

The Helping Hand Company

Ledbury Limited

Bromyard Road, Ledbury, Herefordshire, HR8 1NS. Tel: 01531 635678

Fax: 01531 635670

email: sales@helpinghand.co.uk www.helpinghand.co.uk

Mountway Limited

Tafarnaubach Ind. Est. Tredegar, South Wales, UK NP22 3AA Tel: +44 (0)1495 723000

Fax: +44 (0)1495 723360 Email: mail@mountway.co.uk

Sales Advice Team – 01495 71800

Welland Medical

9 Lewisher Road, Leicester LE4 9LG

Tel: 0116 276 1440 Fax: 0116 276 4449

Mablethorpe Computer Services Mablethorpe Wholesale Ink Supplies

Tel: 01507 477151

Fax: 01507 477190

Email: restorers@btinternet.com Mobile 07710 768454 www.btinternet.com/~restorers

We are the best on System Prices and Peripherals

PC Lessons, Repairs, Parts and Accessories Part Exchange – all at the best possible prices.

The Fine Art of Pacing

When first diagnosed with Post Polio I was told to pace my activities. I thought, “that sounds simple enough to do”. In actuality, I was practising some forms of pacing since I was still working at the time. I had already discovered that I needed to limit my extra outings to one appointment or one errand during the work week Nor could I accomplish as much in any one given day. Nonetheless, over the years I have discovered that there is truly an art to PACING in our lives.

Pacing requires a concerted effort to limit daily exertions. If we become overtired then the daily naps or night-time sleep is still not enough to restore our energy levels. Once you learn how to practice the fine art of pacing you will probably feel better and possibly accomplish more of the things that are truly important to you in life.

Originally pacing meant to me that I could not do sustained activity for a long period of time. I thought that simply meant that I needed to rest periodically. And that is true. However, I’ve since learned that by practising a more controlled schedule in my life I feel better and more energetic. That doesn’t mean I can actually do more activities, I just feel better doing them and to me that is a gift. The need to pace means something different to each polio patient. We each can only do so many activities each day. But some of us are able to function at a higher level. My goal has been to manage my lifestyle so that I am able to enjoy the activities that are truly important to me. Being organized is a necessity to managing PPS fatigue. I plan not just my day’s activities, but also take into consideration what is scheduled for the coming week or even the next few months if I have abnormal social commitments. It is important to consider the consequences of holiday parties or vacations or other special events in order to accommodate the special needs in my life.

For me pacing requires that I not continue a sustained activity for longer than 45 minutes at one time. Then I take a 10-minute break. Even though my original bout with polio seemed to affect just one leg my whole body needs to rest and relax to prevent pain and fatigue. Thus pacing is not just a matter of taking rest periods throughout the day. Elevating my legs slightly when sitting in a chair removes strain from my hips and back. Using a thin pillow to support my upper body also aids in reducing fatigue. Retraining myself from crossing my legs has helped to ease muscle strain as well. Even simple things like using a neck brace when typing on the computer has reduced the muscle strain for me. Being cautious with my activities, using good posture techniques and taking frequent breaks allows me to feel “human” again.

So many people have shared with me their methods of pacing. Limiting the number of errands that we run in any one given day seems to be a tried and true approach to pacing. Napping and true relaxation time is also required to protect the weakened muscles that we all seem to have. But so many of us seem to forget that we need to allow recovery time after a special event, vacation, or illness. If we schedule in the needed rest time following an active period in our lives we seem to recharge faster and not suffer as much from the debilitating fatigue that often follows an active time in our lives. If we also take into account future events that are planned then we can schedule ample down time to accommodate those drains on our limited energy reserves. It can be frustrating to feel so limited in life, but it sure is simpler if we are aware of the need to recuperate and schedule that rest time on a daily, weekly and monthly basis. Pacing to me doesn’t mean just planning my day. It requires thought as to what I may have to accomplish in the coming week or even months. With the holidays before us this is an excellent time to think in advance of the drains that will occur from the extra activity of preparation and family time. If you are organized you may be able to survive the busy period without overdoing. It takes time to decide just what you are capable of and what your true limits are. But I have found that I don’t make commitments that I think will over extend my limited energy reserves. So by being aware of future events I usually determine what chores I can not do to allow me time to participate in life or to withstand a busier schedule. I often make sure that I have two weeks between travelling, major outings, company or whatever seems to drain my energy.

What have I learned about the fine art of pacing? First and foremost is to get adequate rest daily. A good nights sleep and an hour (or more) nap or rest period is vital to feeling good with PPS. Second, I try to cease activities before I get over tired. And a third key for me is to take a “shut down” day at least once a week. My shut down days mean that I do the bare minimum of physical activity that day. And finally being aware of how I sit or recline makes a world of difference in pain levels and fatigue. I am sure that others can expound on their methods of reducing pain and fatigue with their own versions of the fine art of pacing, so

ask others in the support group what works for them and share your own successes. We can all benefit from new and improved methods until we manage to fine-tune the art of pacing. Remember to rest, allow recovery time and to plan for as many activities as possible. Enjoy the holiday and don’t overdo!

Linda VanAken, Richmond Virginia, <ChatnLinda@aol.com>

Central Virginia PPS Support Group.

Marti adds…

Rest before you need to is so important because once you need to, the body has already been overwhelmed. It is so hard to do though. I find myself overdoing and not even realizing it because I am so absorbed in something.

I tend to plan my day around one big thing and then maybe a few little things. I definitely do not like to have a doctor’s appointment and then go out to dinner because it is too much for me. Or go out shopping and then go out to dinner. I will spend the next day in bed.

I never thought about using my neck collar when typing and decided to try it this time. It used to be that I could type, uninterrupted for about 15 minutes but now that has changed to about 1 minute and then rest. I cannot peel veggies either, only can do one and then rest. I cannot do any repetitious activity with my hand.

Back in June, I started making watermelon balls and then realized I couldn’t do this because my hands started hurting. I got my nephew to do it but I really don’t think my sister recognized that this was a problem for me even though I said it was. The comment was that I was trying to get out of work said in a joking way but of course I knew that they believed there was some truth to it.

I can also drive for more hours but only if I have cruise control on the vehicle. If I don’t the driving is limited to less than an hour. I have bought a cart for home that I can carry large packages in, like groceries. I also use it to take the recyclables out to the curb.

Cleaning is a whole another thing. I do a little bit everyday. When I can get someone to vacuum for me I do that, otherwise I can do 1/2 of a room a day. Sometimes if really energetic I can do one room. Most of the time I don’t vacuum at all, about once every 6 weeks.

Marti <MistiqBlue@aol.com>

Editor – As Linda explains the amount of time spent on each activity and the amount of rest needed is individual. You have to assess each activity that you do and work out your own optimum levels for work and rest times.

Exercise is necessary for healthy living but for some daily living will be the most one can manage. From experience and talking with other polio survivors there can be no set pattern because we are all so different. Moving joints, gentle stretching, relaxation and diaphragm breathing are all very important. Hydrotherapy is excellent if you have a pool near you and can have this or afford it. The only person who can really decide on how much is right for each of your muscles is you. How often you repeat any action can vary from muscle to muscle, limb to limb, person to person and day to day. Start low, even one repeat is OK, and increase the number of repeats when you are ready. The help of a PPS knowledgeable physio or other therapist to work with you would be ideal.

Remember the best advice is to pace and rest all activities and exercise. Taking your body to and beyond the fatigue level is likely to cause you more problems earlier in your life. You must stop before you are fatigued and let your muscles recover. Put this into practice, use aids so that you don’t waste unnecessary energy and DO MORE of what you want to do. Overdoing daily is out, overdoing now and then to do something you really want to do is good for you.

PPS SURVEY

A PPS Survey is being undertaken by members Marcia Falconer PhD and Eddie Bollenbach MA, authors of articles on Non Paralytic Polio and PPS and Polio Biology that we have featured in our Newsletters and can be found on our WebSite. Marcia and Eddie are both members of the Lincolnshire PostPolio Network.

They really would appreciate some more UK ones for comparison with other countries. If you are not on the Net then please ring Wendy on 01400 282546 to obtain a copy or email Marcia for an editable text version.

Marcia Falconer for a <ddf@sce.carleton.ca>.

I personally opted for a permanent trach. The best decision I ever made.

I got polio when I was 7 months old from the vaccine in 1959. I am 41 yrs old. Anyway through my childhood I was active, attended regular school, and treated as my other siblings were, only I just used a chair and had leg braces.

As years passed I had a series of respiratory infections, pneumonia’s, etc. Somehow I always bounced back. In the early 80’s I attended college here in southern Illinois in which a still reside with my partner Jim.

In about the late 80’s I started hearing about PPS but none of the medical community here really had heard of it. I would ask my doctor about it, and he would just ignore that concept. Usually out of ignorance or lack of knowledge. But somehow knowing my own body and what I was experiencing I knew it was something similar if not actual PPS. It was just trying to get someone to understand. Breathing was more difficult, fatigue was intense, and my brain seemed foggy.

So, I just kept going on with my everyday activities but tiring by the evening, and having more frequent respiratory infections, etc. Finally in 1994 around January I started feeling constantly fatigued and panicked. My sleeping patterns were iratic or I slept all the time. Then from the end of Feb till about the end of March… life was a bit cloudy. I remember some things but not others. It was almost like I was living in a cloud. But not really sick enough to go to the doctor.

By the beginning of April 1994 my boyfriend Jim, and friends knew something was wrong. I didn’t sleep, eat, and just laid around. When I did go to my GP he sent me home with tranquilizers. That’s the worst thing you can give someone with respiratory problems.

By mid April I don’t remember a thing… finally my friends convinced me to go to the hospital via ambulance. Once I arrived at the hospital I don’t remember a thing. My CO2 (Carbon Dioxide) was so high the oximeter did not read my saturations. They didn’t give me much time. I had respiratory failure.

Luckily enough one of the best pulmonologist’s in our area was in ER that nite. My doctor at the time asked him to take over. He literally saved my life. He diagnosed me with post polio syndrome and did many tests to tell me that I needed ventilatory assistance at night.

We tried everything the Cpap and Bipap machine with mask. It was something I just couldn’t tolerate. I become aware enough of the situation that I personally opted for a permanent trach. You know, that is the best decision I have ever made. Since then I have had less hospitalizations, less infections, and I am thinking and processing much more clearly. I have almost become smarter because my system is filled with CO2.

I am not saying the transition was easy. I need more daily assistance with care, but we all live with what we have and make the best of it. That has always been my philosophy.

Please go see a polio and PPS knowledgeable pulmonologist… get sleep study tests. It would be the best move you could make to have a greater quality of life. We all know that with PPS our muscles have just got tired from the extra work they have had to do over the years… and if we can get assistance to give the muscles some rest then we must do it.

If I can be of any assistance, answer questions, be of support…please email or write to me.

Annette Hanna, Illinois. <nete1@ONEMAIN.COM>

http://www.eskimo.com/~jlubin/disabled/ventuser.htm Ventilator Users List.

Orange and Cranberry Chutney

1 cup chopped orange 4 cups fresh cranberries 1 cup canned pineapple

1 cup chopped apple 1/4 cup chopped walnuts

1.4 cup raisins 2 cups sugar

1 tablespoon cider vinegar

1/2 teaspoon Ginger 1/2 teaspoon Cinnamon

Bring all ingredients to a boil and boil until cranberries begin to pop. Chill before serving

Ms Que <qbanh@home.com>

EXPLAIN GOD

One of God’s main jobs is making people. He makes them to replace the ones that die, so there will be enough people to take care of things on earth. He doesn’t make grown-ups, just babies. I think because they are smaller and easier to make. That way He doesn’t have to take up His valuable time teaching them to talk and walk. He can just leave that to mothers and fathers.

God’s second most important job is listening to prayers. An awful lot of this goes on, since some people, like preachers and things, pray at times beside bedtime. God doesn’t have time to listen to the radio or TV because of this. Because He hears everything, there must be a terrible lot of noise in His ears, unless He has thought of a way to turn it off.

God sees everything and hears everything and is everywhere which keeps Him pretty busy. So you shouldn’t go wasting His time by going over your Mom and Dad’s head asking for something they said you couldn’t have.

Atheists are people who don’t believe in God. I don’t think there are any in Chula Vista. At least there aren’t any who come to our church.

“Jesus is God’s Son. He used to do all the hard work like walking on water and performing miracles and trying to teach the people who didn’t want to learn about God. They finally got tired of Him preaching to them and they crucified Him. But He was good and kind, like His Father and He told His Father that they didn’t know what they were doing and to forgive them and God said “O.K.”

His Dad (God) appreciated everything that He had done and all His hard work on earth so He told Him He didn’t have to go out on the road anymore. He could stay in heaven. So He did. And now He helps His Dad out by listening to prayers and seeing things which are important for God to take care of and which ones He can take care of Himself without having to bother God. Like a secretary, only more important.

You can pray anytime you want and they are sure to help you because they got it worked out so one of them is on duty all the time.

“You should always go to church on Sunday because it makes God happy, and if there’s anybody you want to make happy, it’s God. Don’t skip church to do something you think will be more fun like going to the beach. This is wrong. And besides the sun doesn’t come out at the beach until noon anyway.

If you don’t believe in God, besides being an atheist, you will be very lonely, because your parents can’t go everywhere with you, like to camp, but God can. It is good to know He’s around you when you’re scared in the dark or when you can’t swim and you get thrown into real deep water by big kids.

But…you shouldn’t just always think of what God can do for you. I figure God put me here and He can take me back anytime He pleases.

And…that’s why I believe in God.

This was written by 8 year old, Danny Dutton of Chula Vista, California, for his third grade homework assignment.

Who says Christians ain’t funny?

Come in and pray today,

beat the Christmas Rush !!!

“FIGHT TRUTH DECAY – STUDY THE BIBLE DAILY”

“How will you spend eternity? Smoking or Non-Smoking”

Searching for a new look? Have your faith lifted here.

“THIS IS A CH – – CH. WHAT IS MISSING? (U R)

An ad for one Church has a picture of two hands holding stone tablets on which the Ten Commandments are inscribed

and a headline that reads “For fast, fast, fast relief, take two tablets”

“Come work for the Lord. The work is hard, the hours are long and the pay is low.

But the retirement benefits are out of this World”

Did you hear about the Buddhist who refused his dentist’s Novocain during root canal work? He wanted to transcend dental medication.

Tommy <tlcon@webound.com> Branson PPS Reunion Organiser ppsersandjesus@egroups.com

POST-POLIO DOWN UNDER by Dr. Mary Westbrook

Like other western countries Australia experienced frequent polio epidemics in the last century. These continued for several years after the introduction of vaccination, although at a reduced level, until the early 1960s. One of the worst epidemics was in 1937. Community fear was so profound that the state of New South Wales petitioned the Federal Government to quarantine the badly affected neighbouring state of Victoria. When the petition was refused the NSW Government stationed police at railway stations, wharves and border crossings between the states, to turn back children under 16 years of age who did not have a medical certificate stating that they had had no contact with polio in the past three weeks. Australian Nobel prize winning immunologist, Macfarlane Burnet, accepted the then current view that “polio struck through the nose” and advocated nasal sprays and nose clips. Although doctors were encouraged to set a good example and wear clips these campaigns failed. The island state of Tasmania had the highest ever per capita rate of polio (421 per 100,000) that occurred in a polio epidemic apart from the Iceland epidemic of 1924 (1). (This does not include so-called virginsoil or zero immunity epidemics e.g. the St Helena epidemic, 1945). Epidemics flared up again after a lull during the Second World War, peaking in the early fifties. When the Queen visited Western Australia in 1954 there was a ban on shaking her hand or personally giving her flowers or gifts. She resided on the royal yacht instead of Government House and was not served local food.

Australian polios’ experiences were more similar to that of their British than North American counterparts. This is hardly surprising as Australia still regarded Britain as the mother country and many of the orthopaedic surgeons and senior nurses who cared for us did postgraduate training there. My doctor, Lawrence Macdonald, had spent five years at Oswestry and adopted many of their practices. Sister Bennett who ran the orthopaedic ward was impressed with the British practice of putting young patients in the sun. So we were sunned and sunburnt, wearing bikini type outfits, in the height of the Sydney summer. While Sister Kenny was an Australian she was driven from the country, to the American and world stages, by the condemnation of Australian doctors. Relatively few Australians were treated by the Kenny method so most did not encounter the ubiquitous steaming hot packs described in American polio biographies. Usually Australian polios were treated by lengthy hospitalisation, splinting, daily physiotherapy and some hydrotherapy. Our parents were given little information, visiting was usually once a week, younger siblings were not allowed to visit, and many of us experienced emotional and, at times, physical abuse from staff.

The advent of post-polio. Like our British counterparts we got on with our lives. There was no organisation like the British Polio Fellowship to keep us in contact with each other. As the decades passed the strange symptoms many polio survivors were experiencing only began to make sense as rumours filtered through from the USA in the eighties. In my own case, I picked up a copy of the Rehabilitation Gazette in the University library, read an article on the late effects of polio and realised what was wrong with me. In 1988 American sociologist and polio survivor, Irving Zola, visited NSW to lecture on ageing and disability. During his visit he presented a workshop on the late effects of polio. As a result of this a group of survivors met and established the Post-Polio Network (NSW). The Network’s Committee decided that research was one of its priorities and as I was a psychologist teaching health practitioners and researching disability issues, I was assigned this task. The Network felt that it needed to establish whether the facts emerging from North American research were replicated in Australia. Most polio survivors who contacted the Network, following media publicity, complained of health practitioners’ lack of knowledge of the condition. If the Network was to convince practitioners of the reality of post-polio problems publications were needed in Australian professional journals. Eventually the research findings appeared in medical (2), physiotherapy (3), occupational therapy (4,5) and chiropractic (6) publications. This followed protracted battles in several instances because editors were hard to convince that post-polio existed.

Research program. Essentially my research consisted of an initial survey of over 300 Australian polio survivors. Five years later I followed-up 176 people from the first survey who met the criteria that Ramlow et al (7) reported were valid criteria of physicians’ diagnoses of post-polio syndrome. The initial survey revealed that Australian survivors were experiencing the same late effects, with a similar time of onset (33 years after original infection), as North American survivors. An unusual aspect of the questionnaire developed for the initial survey was the open-ended questions. These asked about people’s reactions to the onset of late effects, treatments they had used and their efficacy, strategies that they found helpful in coping with post-polio and advice they would give to someone who developed post-polio. Their answers provided some new insights into the post-polio experience, many of which were explored by more detailed questions in the follow

-up survey. I will focus on some of these findings rather than on those that mirror North American research results.

Changes over time in physical and psychological well-being.

At the time of the follow-up survey survivors’ answers revealed that significant deterioration had occurred in their physical health status since the initial survey (2). Survivors were questioned as to whether 15 symptoms had developed, or become worse, over the past five years. The average respondent said eight had done so. New, or increased, muscle weakness and fatigue were reported by 91% of the group and 80% had developed new, or increased, muscle pain. Symptoms that remained most stable over the five-year period were cramps, sensitivity to cold, muscle atrophy and muscle twitching. Respondents were asked whether they had experienced new difficulties in eight activities of daily living. On average, four activities were harder to do. Survivors were more likely to use aids or assistive devices at follow-up and to use more aids than they had previously. In both surveys survivors were asked to write an account of their feelings about having late effects from polio. These two accounts were scored for their emotional content. Over the five years respondents emotional distress had diminished significantly. They were experiencing much less anxiety, depression, helplessness and uncertainty at follow-up (5). Thus survivors’ psychological well-being tended to improve as they moved on from the initial crisis of the onset of post-polio even though, objectively, they were more disabled. Of course post-polio problems still caused survivors emotional distress but for most people this had lessened.

Types of coping strategies used and their value.

In the follow-up survey survivors were given a list of 20 coping strategies involving either a lifestyle, personal or social change (5,8). They were asked to check the strategies they had used and also how helpful each strategy was in relieving post-polio symptoms/problems. Personal strategies were the type of strategy most likely to have been adopted. Personal strategies included:-

• Became more involved in interests I can still

pursue,

• Developed my philosophy of life,

• Became a more spiritual person/developed

my inner life,

• Used time I’m resting or alone more

creatively

• Developed new interests and leisure

pursuits.

Seeking enjoyment and spirituality are rarely discussed in the rehabilitation literature as ways of enhancing life with a disability but they have much to recommend them (8,9). Overall, personal type strategies received the second highest number of “very helpful” ratings from survivors.

The second most frequently adopted coping strategies were lifestyle changes. Virtually everyone who adopted a lifestyle change found it provided at least some help. These strategies included:-

• Employing household help,

• Purchasing special furniture and equipment,

Home modifications,

• Pacing, Planning and Resting.

Overall, lifestyle changes were judged as more helpful in reducing symptoms than were other groups of coping strategies or the medical type treatments discussed in the following section (8).

Strategies involving social change were those least likely to be used and they were least likely to be rated as helpful. Survivors found it hard to ask for help from family (only 39% did so) or friends (19%). Of those that asked, just over half found it “very helpful”. While three quarters of survivors had talked to family or friends about their post-polio only about 40% of those who did so rated it as “very helpful’. These findings are disturbing given the research evidence that social support reduces stress and facilitates adjustment among people with chronic conditions including post-polio. There are many legacies from polio survivors’ pasts that make it particularly difficult for them to either seek or accept support from others (8,10).

Health practitioners and treatments.

In the initial survey only 13% of respondents said that a doctor had identified polio as a possible cause of their new symptoms (3). Most people made the connection between their symptoms and having had polio as a result of media reports. Almost one in five respondents wrote unsolicited comments on their questionnaires about their bad experiences with doctors. Almost all survivors had consulted their general practitioners who, if they referred them, were most likely to send them to a physiotherapist. While many physiotherapists were rated as helpful, about one fifth of their clients gave “no help” assessments. These seemed largely due to inappropriate vigorous exercise programs which exacerbated existing problems. Chiropractors, who are rarely mentioned in the post-polio literature, received more favourable ratings than did physiotherapists (2). In the 1980s a new medical speciality, the College of

Rehabilitation Medicine, was established in Australia. Its members are the equivalent of North American physiatrists. At follow-up the doctors rated as most helpful were specialists in rehabilitation medicine. However many survivors only saw them because, at the advice of the Network, they requested a referral from their general practitioners. While 56% of respondents rated the rehabilitation specialists they consulted as “very helpful’ only 33% gave this rating to neurologists, 32% to general practitioners and 25% to orthopaedic specialists. Among specific treatments tried, those rated as particularly helpful were massage, hot baths, special shoes, drugs for pain relief, and counselling. There was a mixed response to certain treatments with some survivors finding them very helpful and others no help e.g. swimming, hydrotherapy, exercise programs and stress management courses (2).

Stress from the past.

The two major sources of information from the epidemic days are the publications of health practitioners who treated polio patients and the biographies of people who contracted polio. These, I have argued (10), gave rise to two myths. The gross underestimation by health practitioners of their patients’, particularly children’s, distress led to a myth that: Contracting polio is not very upsetting for children: They soon get over their distress unless they are spoilt. Survivors’ biographies also downplayed the stress associated with having polio and contributed to the belief that polios should: Ignore their distress. Hard work and cheerful acceptance overcome polio.

Do survivors’ memories support these beliefs? At the end of the questionnaire I asked survivors to write an account of their early memories of having polio. Overall, 84% of their narratives expressed anxiety. The most frequent type of anxiety related to separation e.g. “I can still see my parents leaving the hospital and myself screaming”.. Most accounts contained depression (70%), 45% expressed anger and only 17% registered any feelings of pleasure or happiness. The social interactions described in survivors’ stories were categorised as negative (e.g. someone harms or upsets the narrator, “They cut off my plaits. I still cry to think about it”) or benign (these interactions ranged from positive e.g. “ I enjoyed my parents’ visits ” to neutral e.g. “The nurse wheeled me to the ward”). Negative interactions were described in 57% of accounts and benign in 56%. My research into people’s experience of other events indicates that these polio stories have extremely low rates of benign and very high rates of negative interactions. Some health practitioners writing at the time of the epidemics believed that contracting polio was more upsetting for adults than for children but I found little difference between the emotions expressed by survivors belonging to these different groups. Survivors who were older at the onset of polio were more likely to report anxiety about dying. Those who had been young children were more likely to express anxiety about guilt, often attributing their polio to punishment for bad behaviour. Survivors who had been in iron lungs were more likely than other survivors were to express feelings of death anxiety, non-specific anxiety, uncertainty and anger. Such memories, and the social attitudes that denied their reality, have added enormously to survivors’ problems in facing a second round with polio. They fear they will be abandoned once again while at the same time berating themselves for finding their “small” problems so difficult to deal with (8,10).

The last decade has seen many achievements by Australian polio survivors. There are now support groups in all six states. The Post-Polio Network (NSW) has about 800 members with nearly thirty support groups across the state. The Network receives queries from survivors around the world via its WebSite www.postpolionetwork.org.au. It publishes four 16-page newsletters and four information bulletins each year. It has produced a medical alert card and an information booklet (11). The latter is included in the information pack sent to enquirers. Many enquirers make no further contact while some wait several years before joining the Network. We have more female than male members, some members never attend meetings and several send their wives to meetings to gather information. Four afternoon seminars with guest speakers are held yearly. We try to make one of these a mini-conference in a large country city rather than in Sydney. An important task of the Network is informing polio survivors about postpolio and increasing health practitioners’ and the community’s awareness of the condition. The Network participates in a nation-wide polio awareness week each year and in community education programs on immunisation. It persuaded two medical soap operas to produce an episode about post-polio. One woman contacted the Network after being phoned by her general practitioner at nine one evening. He told her, “I’ve just watched ‘Country Practice’ on TV and now I know what’s wrong with you”.. Three national conferences have been held at which American and Canadian experts, Drs Cashman, Yarnell and Elizabeth Dean, were keynote speakers. However while post-polio clinics have been established in some state capital cities, appropriate health care often remains hard to find and support groups frequently act as informal referral networks.

REFERENCES

1 `Killalea, A. (1995) The Great Scourge: The

Tasmanian Infantile Paralysis Epidemic, 1937- 1938. Sandy Bay, Australia: Tasmanian Historical Research Association.

2. * Westbrook, M.T. (1995) Changes in post-polio survivors over five years: Symptoms and reactions to treatment. Proceedings of the 12th World Conference of the International Federation of Physical Medicine and Rehabilitation, Sydney.

3. Westbrook, M.T. (1991) A survey of post-polio sequelae: Manifestations, effects on people’s lives and responses to treatment. Australian Journal of Physiotherapy, 37, 89-102.

4. Westbrook, M.T.& McDowell, L. (1991) Coping with a second disability: Implications of the late effects of poliomyelitis for occupational therapists. Australian Journal of Occupational Therapy. 38, 83-91.

5. Westbrook, M.T. & McIlwain, D. (1997) Living with the late effects of disability: A five year follow-up survey of coping among post-polio survivors. Australian Journal of Occupational Therapy, 43, 60-71.

6. Westbrook, M.T. (1991) Clients’ evaluation of chiropractic treatment for post polio syndrome. Journal of the Australian Chiropractors’ Association, 20, 143-151.

7. Ramlow, J., Alexander, M., La Porte, R., Kaufmann, C & Kuller, L. (1992) Epidemiology of post-polio syndrome. American Journal of Epidemiology, 136, 769-786.

8. * Westbrook, M.T. (1995) The hassles of living with post-polio: Some survival strategies. Proceedings of the Consumers’ Forum Workshop on PostPolio Syndrome, 12th World Congress of the International Federation of Physical Medicine and Rehabilitation, Sydney.

9. Westbrook, M.T. (1999) Spirituality, Lifestyle changes. In F.M.Maynard and J.M. Headley (Eds.) Handbook on the late effects of polio for physicians and survivors. St Louis: GINI.

10. * Westbrook, M.T. (1996) Early memories of having polio: Survivors’ memories versus the official myths. Proceedings of the International Post-Polio Conference, Sydney.

11. Westbrook, M.T. (1999) Post-Polio Network: Helping polio survivors live successfully with the late effects of polio. Sydney: Post-Polio Network (NSW) Inc.

*These papers are in the library at the Lincolnshire Post-Polio WebSite:

www.ott.zynet.co.uk/polio/lincolnshire/library.html

Christmas Present Idea

with percentage of profits to our funds.

Member Pat Hollingworth and David Clark – Snickers Workwear

offer White Polo Shirts

with embroidered LincsPPN Logo with or without first name.

Description, white polyester cotton 65/35%, collar, three button,

shirts with a breast pocket located embroidered logo of 13,500 stitches

Sizes available are S 34 -36, M 37- 39, L 40 – 42, XL 43 – 45,

XXL 46 – 48, XXXL 49 – 51

Prices are £10 with just the Logo on, £13.50 with embroidered First Name below logo.

Please send your orders and cheques, which include postage direct to you, to Hon. Sec. Wendy Grimmitt

Probably the lightest calipers in the world with knee stabilisation.

Ambroise UK Limited is a partner company of Ambroise Holland who are the developers of the Utx Swing and Stabil braces that some of our members are now wearing. Dr. Robin Luff speaker at the Seminar at St. Thomas’ Hosptial mentioned these calipers in his talk on Orthotics.

Founded in The Netherlands, many years of research and development has resulted in these exceptional products which are now available through Ambroise UK Ltd.

The driving force of Ambroise UK Ltd is the managing director and clinical advisor, Mr Ken Spooner, who has over 20 years experience within the medical field.

All their products have been developed within outstanding Dutch technical universities and are guaranteed high-quality products. Coupled with these exceptional products, Ambroise UK Ltd offers excellent service, advice and continual support.

KEN SPOONER AMBROISE UK LTD

1st FLOOR, 47 DITTON STREET, ILMINSTER, SOMERSET, TA19 0BW

Telephone: 01460 55711 Fax: 01460 259129

Mobile: 07775 647877

Email: info@ambroise-uk.com http://www.ambroise-uk.com

POLIO SURVIVORS DRUGS and ANAESTHESIA

It is important that ALL Polio Survivors are aware of the fact that we tolerate some drugs and anaesthetics to a different level than that of non polios.

When you received Information from us we included leaflets about Drugs and Anaesthesia.

** What you should know about your medications? A guide for Polio Survivors.

Joan M. Walker PhD, PT and A M Whelan, Phar D (Uk version) A F Forde MRPharm. B.Sc.Hons

** You are going to have surgery – A Guide for Polio Survivors

by Joan M Walker PhD, PT

** Polio Survivors as Patients – Guide for Emergency Care & Surgical Health Workers

Joan M Walker PhD, PT., C. McGowan & G. Vardy

In earlier LincPINs we have published

** Preventing complications in polio survivors undergoing surgery.

by Richard L Bruno PhD.

** Be true to your PPS and your teeth won’t be false to you: Preventing complications in Polio Survivors undergoing Dental Procedures.

by Richard L Bruno PhD

In our August LincPIN following her speaking at the GINI Conference in St. Louis in June, we published the article

** Summary of Anesthesia Issues for Post-Polio Patients

by Susan Harrison Calmes MD,

Chair and Clinical Professor of Anaesthesiology, UCLA

The British Polio Fellowship Bulletin latest issue contains an article on page 22 entitled

‘Anaesthesia Considerations for Polio Survivors’

Geoffrey T Spencer, OBE, MB, BS, FFARCS, which is a summary of the conclusions of ‘Perioperative care in restrictive respiratory disease’ by Patrick HA, Meyer-Witting M, Reynolds F,

and p390-395.

Spencer GT. Anaesthesia, 1990, Vol. 45,

Geoffrey Spencer is a Former Consultant, Department of Anaesthetics, Lane-Fox Respiratory Unit, St. Thomas’ Hospital, London.

Those marked ** can be found in the Lincolnshire Post Polio Library and in Newsletters on our WebSite.

Most of us thought that we only had polio where we were paralysed and have made comments like ‘I only had it in one leg’ or ‘waist down’ or ‘just in my right arm’. The majority of us show little external visible sign of our polio damage until we have functional decline. What we did not realise was that at least 90% of the anterior horn cells were in some way affected during the polio infection. When examining us health professionals did not see any clinically evident weakness in any area until we had about 45% nerve damage with paralysis being evident at 60%+ nerve damage. This explains why we are having problems in areas we did not realise had been affected by our polio.

Many earlier medical articles to this year stated that you had to have had paralytic polio to have ‘PPS’. Excluding those with a diagnosis of non-paralytic polio 45-59% and those with under 45% damage. But the articles also stated that they were seeing problems in areas not thought to be previously affected. The areas of our body that had non-paralytic polio. Dr. Halstead and Dr Silvers article ‘Nonparalytic Polio and Postpolio Syndrome’ in the Special Feature on PPS in the Jan/Feb 2000 American Journal Of Physical Medicine and Rehabilitation states

A history of remote paralytic polio

or findings on history, physical examination results,

and laboratory studies compatible with poliovirus damage of the central nervous systems in earlier life’

This article referenced The Lincolnshire Post Polio Library Article ‘Non Paralytic Polio and PPS’ by Marcia Falconer and Eddie Bollenbach’s which we published in January 1999. There were two other articles in the PPS Feature, one by Marcia Falconer PhD and Eddie Bollenbach MA ‘Late Functional Loss in Nonparalytic Polio’ (Survey information page 8) and ‘Paralytic vs. “Nonparalytic” Polio. Distinction Without a Difference’ by Richard L Bruno PhD.

Most of us were children, some of us have no memory of our polio, and the years have passed. To err on the safe side if you are going to have any anaesthesia even for a minor procedure (including local anaesthetic) you should inform health professionals that you had polio and have copies of the leaflets/articles available for them to read if they are unaware.

Your new membership card – will be with your shortly, delay with manufacture for which we apologise – contains a medic alert statement on the reverse. You could also purchase a medic alert bracelet. It is also a good idea if you write or type out some details about yourself, your polio and the drugs you take, and carry this with you in your handbag/ wallet.

See easiest ‘filing cabinet’ to find on next page. Richard L Bruno, PhD is undertaking a PPS Anesthesia Study. You will see that he would appreciate a copy of the Anaethesiologists report. In the UK, unlike the USA, we are not given copies of our medical reports and records unless we request

them and pay for the copies. Having talked with many polio survivors I wonder how many of us have been told if there was any problem with our anaesthetic? If do not have email you can either write directly to him or send the information to us and we will forward it.

PPS ANESTHESIA STUDY

All of this information will help us be better able to convince anesthesiologists and surgeons that the type and amount of anesthesia and pain medication must be tailored to the individual polio survivor and not be determined merely by body weight.

We are collecting case histories of polio survivors who’ve had frightening, dangerous or good experiences with anesthesia. The anesthesia could have been a gas, intravenous or oral (or some combination) and used for a diagnostic procedure (such as a colonoscopy), minor surgery (such as dental surgery), laporoscopic surgery or an open procedure.

We would like to hear about the effectiveness of the anesthesia and any side effects you may have had, including:

* Waking up during the procedure;

* Vomiting after you received the anesthesia;

* Not being able to wake, breathe or swallow for hours or days after receiving the anesthesia;

* Feeling sleepy or fatigued for days or weeks after

receiving the anesthesia;

* The amount of PAIN you experienced after the procedure, whether you received pain medication and the type of Pain Medication you were given.

Please include:

* The AGE at which you had polio;

* If you had BREATHING PROBLEMS when you had polio, what they were and if you used a respirator or an iron lung;

* Your AGE and DATES when you had the anesthesia;

* Breathing problems you had AT THE TIME of the

procedures (including sleep apnea and

whether machine);

you were using a CPAP or BiPAP

* Any medical problems that might make you more sensitive to anesthesia (such as liver or kidney disease).

Please e-mail the above information if at all possible. Don’t include any childhood surgeries where you were given ETHER.

We would also very much appreciate your mailing the ANESTHESIOLOGIST’S REPORT that describes how much anesthesia you received, the type of anesthesia you received and your response before, during and after the procedure.

As always, many thanks for your assistance!

Dr. Richard L. Bruno

Chairperson International Post-Polio Task Force and Director, The Post-Polio Institute Englewood Hospital and Medical Center Englewood, New Jersey, USA. <HarvestCtr@aol.com>

MEDIC ALERT INFORMATION STORE IT IN YOUR REFRIGERATOR

Now this may sound weird, but for a couple of months now I keep a copy of my current computerized medical information sheet in a tall, wide-top plastic water bottle (it looks like a big prescription bottle) in my refrigerator. I got fancy and put a red cross on the bottle. I did this after a nurse friend of mine told me the EMS folks for our region are implementing a program to have everyone in our part of western Oklahoma keep a medical information sheet in a bottle in the refrigerator. When fully implemented, large prescription bottles will be provided free by participating local pharmacists.

The concept is this. Of all the storage places in your house, the refrigerator is easiest to quickly locate compared to desk drawers, filing cabinets, laying on a table top, hanging on a wall, etc. or even on your person. In an emergency call by EMS, you may be in a coma, passed out, faint, and so on, so the EMS people look in the fridge and find your medical information sheet you don’t need to tell them. Or if you are conscious but weak, feeble, panicky, etc. you can just say “look in the refrigerator” to the EMS people or anyone else coming to your aid, if you need to say anything at all. If calling 911, the person answering 911 can be told emergency information is in the refrigerator.

The idea is not fully implemented yet by all people concerned. But I like the idea so much that I made up my own “medical information refrigerator bottle.” I figured the idea is really good for people living alone such as myself and it is a simple thing to do. Luckily, no need for anyone to find the bottle has come up yet.

Sincerely, Cactus Jack in Oklahoma Jack_Schwartz@ITLNET.NET

(Polio 1943 at age 4, PPS 1988, pacing, AFO, Neurontin 300 mg, 3x/day)

HINTS TIPS AND BITS from PPSERS world-wide

I could not agree with you more on making things look as wonderful as possible. I am on my second scooter, the first was a three wheeler that tipped on the lawn, I was spared. I loved it as it could go more places than my four wheeler and it had a fabric seat and was a pretty pink. This one that I ended up purchasing is a four wheeler with a bright red metallic finish and I do use a gorgeous plaid throw on it to assist with the sweat from the leather/vinyl seat.

I have also learned to carry a plastic cover up that you can see through in case it rains……when it rains and the main board on my computer gets wet it will only operate in reverse and we have no control over it, we learned this the hard way.

I treat my scooter with the same respect as I treated my feet, it is mine and I have my name on the front. A friend sent me some decals that were holographics in my name ” Linda “, and I chose to put them on so that anyone who did not know my name and was talking to dear husband or my darling daughter would also speak to me and it has worked. Linda B.

You know, most survivors would balk at going into a power chair. I must be nuts cause I can’t wait. 7.5 mph is faster than 5.5mph. And I figure anything that requires a seat belt must be fun to drive!! It will also take up less room in the apartment.

Jo <KellyK10@aol.com>

Just wanted to let you know about the ONLY cushion I can tolerate, it is the Roho air-bubble, and is comfortable for hours “on end” <grin>

I have a tendency to sort of list to one side therefore placing more weight on one side than the other, so I have the model called the “Enhancer”…..it has two air valves which allows for one side of the cushion to be pumped higher than the other so you sit square.

Ree in MA <debbiesmom@webtv.net>

Try a Speakerphone or headphone attachment if you find holding a phone up to your ear is getting harder. Sustaining muscle action to the point of fatigue is not a good idea, try aids and give your muscles a rest.

Get some Voice Recognition Software before you need it all the time so that you can give yourself a break from typing some of the time.

Hilary <linpolio@legend.co.uk>

It has been three and a half years since I had to retire on SSDI and hit the post polio wall and life got changed totally. I have been an RN [registered nurse] for 30 years and had no idea how much of my own identity was connected to what a HUMAN DOING I have been. NOW I am working on a new job… HUMAN BEING. And making memories everyday. Enthusiasm is so very important.

Today it rained here in the desert and we had BIG TIME lightening and thunder. I saw a full rainbow… and just sat in my van gazing at this beautiful site in the sky! Then after it got dark, had an amazing light show of lightening for a couple of hours… seeing it flash from behind the mountains surrounding this valley. IT was wonderful. NEVER have seen lightening quite like this. I grew up with great storms; they have good light shows after dark in Puerta Vallarta… but I was so aware of that Power so much greater than ourselves today as I enjoyed all these beautiful things of nature! The air smelled so different and it was so up lifting for me. Restful you know?

Linda Dempster <DEMP12@AOL.COM>

Anita received this note from her daughter.

“When I was little, I called you Mommie. When I was older I called you Momma. I never called you Mom because that’s what we called Grandma. Today, as I see how you’ve handled all the trials and triumphs in your life, I just call you Amazing.” Love Lori.

Anita Bjorling <anitabjorling@HOTMAIL.COM>

At the doctor’s office, the PPSer had to fill out a questionnaire.

One question was, “What kind of exercise do you do?” “None,” he wrote.

The next question read, “How often do you do it?” He quickly filled in, “Every day.

Forrest Gump is wrong!

Life is NOT like a box of chocolates.

It’s like a jar of jalapeno peppers you never know when it’s going to burn your arse.

Marsha in Texas <marsha@ccms.net>

ON FOREARM PAIN, I solved this by making sure my chair was at the correct height. I now sit in the chair so I can position my forearm on the armrest of the chair while I use the mouse of the computer. This gives my forearm support and keeps the stress off the forearm muscles.

Ed Keohan <ekeohan@fiam.net>

I’ve learned that you shouldn’t go through life with a catcher’s mitt on both hands.

You need to be able to throw something back.

LEG WARMERS and going to bed with cold feet:

1. Plunk your cold feet on your spouse. But what if you have twin beds?

2. I had a Cornish Rex cat. As you know, that breed is practically hairless. So when I went to bed, Smoky would nose his way under all the blankets until he found my bare feet. There, he would nestle comfortably (and no comments about

“smelly” feet from anyone!) and both of us kept warm all night! Alas, when we moved to a condo, Smoky was not allowed to come. I hope his new owners are keeping him warm. But, my feet missed him so much!

3. Using a hot water bottle might sound like the obvious solution, but hot water bottles get cold in time, and I don’t like the feel of them.

4. Electric pad or blanket? Sorry, I love to scrunch the blankets around me, and that is a no-no with an electric blanket.

5. Well, wear socks to bed, you say. I tried this and it worked the best, but socks still had a drawback: with wearing hose all day and socks all night, my feet didn’t have a chance to be “free” so to speak.

Aha, the solution for me was this. I had purchased a loosely knit pair of leg warmers to use when we were in the motorhome. On cool days, the floor is cold, so I would don these leg warmers and my legs were kept warm. Leg warmers are like those dancers wear when they are exercising – open at both ends, and quite long. I stitched up one end of the leg warmers, and I pull them on at night – they reach up to my knees; my feet have plenty of room to wiggle my toes; there is absolutely no constriction on my legs to cut off circulation. At last – I can do without those 5 things listed above. No, wait. I’m not exactly truthful. I still miss Smoky – he was the best!

and

It might be interesting to hear how you take safeguards against crime since we are physically vulnerable. Just last week, a lady who wears braces because of polio was out on the streets in the Vancouver, B.C. area to sell poppies for our Remembrance Day on November 11. Several very young teens came along and set out to snatch her contribution box – about $80 in it. She tried to resist, got a slashed hand which required stitches, but the thieves made off with the money. A most despicable crime.

When I am on crutches, standing outside a building and waiting for my husband to bring the car around, I feel very conscious that I could well be the victim of a purse snatching incident. I often give my purse to my husband to carry with him to the car. When I am shopping in the malls, I tie my purse by its handle to the basket and cover it up with a plastic bag or whatever. Should someone try to grab my purse from the basket, they would inevitably pull the wheelchair over. I need my purse for hanky, glasses, etc. Often I take out any credit cards and put them in a zippered pocket on my person. Nothing, of course, is 100% safe – but for sure, we’re not able to defend ourselves. If I am on crutches, I just need to get a shove – even a gentle shove – and I am flat on my face. How do you approach your vulnerability to crime?

Joyfully, Viola Pahl <violapahl@iname.com> White Rock, British Columbia, Canada http://www.pahls.com/books.html

(Viola has written six books – some of them include stories from physically disabled people.)

A man entered his local paper’s pun contest. He sent in ten different puns,

in the hope that at least one of the puns would win. Unfortunately, no pun in ten did.

The Eastern Polio Support Group in Australia is made up of approximately 45 “Polio’s”, their families and friends. We meet on the third Saturday of each month in a church hall in Box Hill, which is an eastern suburb of Melbourne, Victoria, Australia. We are incorporated and mainly self funded, other than small grants from local councils and the State government which is used to pay printing and stationary costs. We are currently applying for registration as a charity.

Our aim is to provide advice and mutual support to people who have had polio, and/or the late effects of polio (PPS), to educate the community on the need for continued immunisation and to provide a focal point for discussion on issues affecting one or more members of the group. We also enjoy each other’s company and look forward to the social content of our meetings.

Victoria has a centralised service, Polio Services Victoria, funded by the State Government which provides access to doctors, physios, orthotists and occupational therapists who are familiar with Polio and the needs of “Polios”.

We are sure that the issues which face us are universal, particularly as we are an aging population. Our youngest member is aged 46 and the average age is 65. We are concerned about adequate funding for equipment, suitable housing, access to quality medical care and maintaining our independence.

Personally, I contracted Polio at the age of 4 months in 1954. I have been having problems with PPS for approximately 10 years. I have moved from no aids to calipers, crutches and an electric scooter over the past three years. I have had to dramatically reduce the number of hours I work due to PPS and am now in the process of retiring from the workforce. I hope to take a more active role in PPS research once I have more time available.

We would be happy to answer any questions you may have and look forward to hearing from you or your members.

“Trish Malowney” <tmal@planet.net.au> Editor – Eastern Polio Support Group Inc.

DRIVING – Are you getting more pain in your right ankle, knee, thigh and hip when driving? Have you checked to see if your right foot is weaker – now dropped again – can you lift that foot up to 90 degrees still and if you can, can you sustain this? Using the accelerator means having to hold your foot in a certain position with a little up and down movement for speed changes for a long time. As the muscles that do this weaken other muscles up your leg and back

come into play and try and help. You then get pain in the knee, hip and back.

Do you get more pain in your right leg when you are driving in town or on windy roads compared to when driving on the motorway? You are doing more accelerator to brake movements. Have you been lifting your left leg onto the clutch? Is this leg now weaker and is it time to change from a manual to automatic? Does your arm ache at all when driving? Would an arm rest or different controls take the strain off your arm?

I was fitted with an Ankle Foot Orthosis and 95% of the pain in my right leg when driving went..It took two months of endless getting, or trying to, in and out of cars to find one that fitted me. A Motability VW Sharan 2.0 Automatic. No more lifting my left leg onto the clutch, no more struggling to get in and out of a normal height car, much reduced pain and strain on my left arm as I now have an arm rest, room for my scooter in the back and a hoist to get it in and out…. Driving is once again an enjoyable experience and I have control of that part of my life back. The only drawback for me is being six foot tall with very long legs and having a scooter. The Sharan was the smallest vehicle that fitted my needs and I had to pay a hefty deposit plus purchasing the hoist on top of handing over my mobility allowance.

You can apply for a grant for this but I was told this can take about six months and you need a doctors report stating why you need this particular model. In the summer of 97 I could not get a doctor to fully assess me let alone write a report. Hopefully this will not be a problem for the change of vehicle in October 2001.

Hilary <linpolio@legend.co.uk>

Sticky Situation

A movie thriller was just zooming to its climax when an elderly woman began searching under her seat, disturbing the man next to her.

“What have you lost?” the man demanded. “A caramel, ” she replied.

“You’re going to all this trouble for one caramel?” he hissed.

“Oh, yes,” she replied. “It has my teeth in it .” Joan in Oregon <ladybugs66@juno.com>

After a two-year long study,

the National Science Foundation announced the following results on

corporate America’s recreation preferences:

The choice for

unemployed or incarcerated people is basketball. for maintenance level employees it is bowling.

for front line workers it’s football. for supervisors it’s baseball. for middle management it’s tennis. for top management/directors is golf.

Conclusion: The higher you are in the

corporate structure, the smaller your balls are.

Here are some of the letters/emails that we have received to give you some idea of the questions we are asked. If you can offer suggestions then please get in touch.

The first asked:-

1. I seem to have continuous pain…are there ways to manage this?

2. I am having trouble with balance. Unexpectedly it seem as if groups of muscles are just “not there’ (i.e. the outer side of my left foot, or the muscles in my thighs), causing me to stumble or fall. Are there ways to avoid this?

3. I have been told to exercise by one doctor, yet have been told by the physical therapist and other doctors that any extra activity would only add to my fatigue, and diminish the time I will have to live a “normal” life before the effects of p.p.s. are debilitating. How do I determine who is right?

4. It seems that every day brings a new type of pain, in a new set of muscles in my feet or legs. Does this mean that the disease is progressing, or just the “nature of the beast”?

5. In my profession I am required to be on my feet most of the time. I find that it is easier to move around once I have been on my feet for a while, although I become very tired much more quickly than even last year. Is this typical?

6. I have been told by another p.p.s. victim that if I were to wear a brace, it would help me walk and to climb stairs more easily.

How do I find out about this? To whom do I talk? Royce Ruther <trrut@bright.net>

Another:-

When I fell down the stairs a few days ago I was quite reassured by the speed which my brain worked. In a split second that seemed like ten my brain said “do not fall forwards, do not go down in a sitting position jarring your spine on each step, pull all limbs in so you don’t knock anything on the way down, just lie back think of England and pretend you are a toboggan on the Cresta Run.” Amazingly I managed this including the as yet unnamed 90 degree turn half way down which made it very exciting. The most difficult part was breaking at the bottom of the stairs – a brick floor.

I slid to a stop in a sitting position with legs out in front of me on the cold floor. I gingerly moved each limb and everything seemed to work to the same level as before which was a great relief. I then burst into tears wondering if the next time I fell I would be as lucky. I sat there for some time collecting my thoughts, wondering why the medical profession just do not seem interested in addressing themselves to my latest symptom ‘internal’ numbness on my left side that started seven months ago.

On May 1st I woke to find the left side of my body

was numb just like a dental injection. I could move so I made the decision it was not a stroke and contacted my GP. I have seen seven doctors – two of these Consultants – since that date yet no one seems to be able to say what is causing this, why it happened, what they can do to help me.

My own research has shown that I do not have full information on body and limb position called disturbed proprioception. It started feeling just like a dental injection and is gradually going through the ‘wearing off’ stage. When I walk I put my right foot forward as normal and I hope my left leg will follow as normal but I don’t know what it is going to do. Sometimes it does and sometimes it goes off in its own direction. Which is why I fell. When I bring a fork to my mouth to eat I am never sure if its going to make it. However as that side of my face is also affected it doesn’t hurt much if I miss.

Worrying as this is whenever I tell another polio survivor we laugh our way through this story and I hope you have had a few smiles as well. There is of course a difference in telling someone who can relate to your situation which is why I believe contact with other polio survivors with PPS is so important. It really does lighten the load on some days.

I can feel touch on my skin and pain in the muscles but the inside of my leg feels ‘numb’.

I have a well recorded history of 20 years muscle weakness and gradual functional decline. I now have confirmation that I had type 1 polio as a child. I can remember being in bed for many weeks and am assuming that I did not reach the paralytic stage. My parents were middle class and the ‘doctors always visited the house’ with my varied childhood illnesses. In those days parents did not tell children what was wrong with them. I believe I have late effects of my polio but also have other problems. I have many diagnoses including ‘do not have’ what others say I have.

Hilary described a similar ‘internal numbness’ to her doctors about her left leg. In February 1995 when she developed severe pain from hip joint down the back of her leg under her heel to the left side of her foot. She told me ‘It is difficult to explain but in the same path where I had pain I have been left with skin where the feeling of touch is different to skin nearby and an ‘internal feeling of numbness’ as if part of the inside is not working as it used to. ‘

Does anyone else experience this or have any ideas what could be causing my symptoms?

Jean Murdoch <jean@murdocha1930.fsnet.co.uk> Lincolnshire

HELP REQUIRED for calliper users wearing trousers.

One problem I haven’t cracked is how to stop the callipers from ruining my trousers! It may seem ludicrous but I have to dress smartly for my professional life and the damage is proving costly!! Do you have any hints on how to protect my suit trousers or at least to increase their life span?

Any advice would be appreciated.

James McKillop <james.mckillop@beaumont1.demon.co.uk>

Editor – I am six foot tall and finding trousers long enough, wide enough to go over calipers, strong enough yet smart enough material is difficult.

Any other problems with/tips/ideas on clothing would be appreciated.

See Bean Fudge Recipe on page 23

Idaho’s Pinto Bean Pie

(This is supposed to taste like Pecan Pie)

1 heaping cup of mashed Pinto beans

1/2 cup sugar

1 cup brown sugar

1/2 cup butter

2 eggs, beaten Unbaked pie shell

Blend sugars, eggs, and butter until creamy. Add beans and blend well.

Pour into a 9″ unbaked pie shell. Bake at 375 degrees F for 20 minutes,

then at 350 degrees F for an additional 24 minutes or until inserted knife comes out clean.

Each serving provides 427 calories: 5.74 grams protein, 20.5 grams fat, 57.25 grams carbohydrate.

UPDATING YOUR CHILDHOOD By Lloyd J. Thomas, Ph.D.

In India, they use grown elephants for logging. At night, they tie down each elephant’s leg with a small twine and a small wooden stake. The elephant could easily walk away, but never does. It believes that when there is pressure on his hind leg, that it is impossible to move beyond the limits of that string. A strong animal that has been lifting tons of logs during the day, is held back and limited by a small stake and string. How did it get that way?…hobbled by such a seemingly small thing?

When the logging elephant was very young, he was chained (with a large, heavy chain) to a large tree. He would struggle against the limits of the chain until he was exhausted. It seems that he finally learned “when my hind leg feels the pressure of the chain, that is as far as I can walk.” So he quits struggling. He makes an immature cognitive conclusion about his limits and his ability to move beyond them, under certain circumstances. As the elephant grows, the chain is replaced by a rope, then the twine. The tree is replaced by a smaller tree, then a large stake, then a small one. The elephant never updates the conclusion he made as a youngster. By the time he is fully grown, he still does not struggle against the puny twine that keeps him tied down. He never challenges that conclusion made in childhood about what he can and cannot do when his hind leg is shackled.

All of us were born into a rather chaotic world. Children are bombarded by new and meaningless stimulation of every one of their senses. Some of that stimulation is pleasurable, desirable and safe. Other stimuli are painful, repulsive and dangerous.

Gradually our brains and nervous systems develop sufficiently so we can begin organizing the chaos into perceptions and assigning meaning to them. We begin to make immature cognitive conclusions about ourselves, others and the world in which we live. These conclusions are generally made by the time we are 5 years old. We decide that certain actions will result in what we want, while others are likely to get us into pain. We develop a kind of “working hypothesis” that says, “This is who I am, who the others are, and how the world is.” We conclude that our experience and perceptions are universal and “this is what life is like.” Just like the young elephant concludes he can’t walk beyond the limits of his tether.

Trouble begins when we grow older, gain more experience, and never revise or update our original conclusions. We keep fitting new experience into old familiar perceptual patterns. We paint new events with old color. We massage new relationships into shapes and roles with which we are most familiar, and with which we are most comfortable. We often carry our childhood conclusions about ourselves and our abilities right on into adulthood, without ever challenging them.

In our rapidly changing world, almost all of our immature cognitive conclusions have become obsolete. As grown-ups, we are no longer helpless, dependent, incompetent. We are no longer children. And the childhood conclusions we made have usually become irrelevant. But we tend to keep them and continue to behave as if they were still accurate, still true and still useful.

To ease the anger, pain, and fear about giving up our childhood beliefs, as well as all the behavior based upon them, we first need to realize that it was precisely those conclusions, now mistaken and inappropriate, which got us through the first 20 years and allowed us to Survive the way we did. We were clever enough, perhaps even brilliant, to have made it through childhood, albeit with a lot of help from parents, teachers and friends. But now, RIGHT NOW, those conclusions may not work. They may now be mistaken. A grown elephant could easily pull up the stake tied to his leg and simply walk away.

For example, the person who feels angry or threatened about being abandoned as a child, feels very justified as an adult in his anger, jealousy, and controlling behavior. And he gives himself, and others all kinds of examples and details of how unfairly he was treated (or is being treated.) And he is right…he was treated unfairly and was cheated as a child. But now, RIGHT NOW, he is cheating himself! As long as he continues to spend his energies being angry at the people who left him or deprived him at one time in his childhood, he has precious little energy left to spend on getting for himself what he needs NOW by way of closeness and happiness. His rage isn’t hurting his parents (chain), because they are no longer his parents. They are no longer crippling him. His immature childhood conclusion is. He is crippling himself!

Happiness in life lies not in trying to change your history or your childhood experience. Happiness lies in challenging all of your childhood conclusions, letting go of those that are no longer relevant, and experimenting with new ones. To update your life, you need to to identify childhood guilts, grievances, resentments, pain and fears. By updating your childhood, you can prevent it from limiting you today. You can stop your childhood from robbing you of your entire life. As an adult, you can simply walk away from limiting conclusions, and get on with living now. You can update who you think you are. You can choose to experiment with new ways of functioning. You can freely say “goodbye” to your childhood and walk into your future as a free and fulfilled adult.

Lloyd J. Thomas, Ph.D. has 30+ years experience as a Life Coach and Licensed Psychologist.

Telephone 001 (970)568-0173

E-mail: <DrLloyd@CreatingLeaders.com>

CONFERENCE TALK by TONY GOULD Author of ‘A Summer Plague’

I’ve been asked to talk about the patient’s perspective. Well, if you look at the timetable of this conference, you’ll get some idea of how high a priority the doctors give it. Now I don’t want to bite the hand that cares for me, but who has been allocated the notoriously

TAKING TIME OUT

When people come to visit me they usually comment on how relaxing it is in my company. There I am reclining on the sofa, they get comfy in an armchair and we have a good old chat. The thing is, it occurred to me quite some time ago that I’m really not very relaxed at all. Even when I’m lying down resting l’ve found that my body can be quite tense,’ and having spoken to others with polio, it seems I’m not alone.

I’d like to explore the reasoning for this tension another time, but for now I’d like to talk about ways we can help ourselves and conserve our precious energy by learning to relax more. The reason I feel this is very important is that If we’re tense, we’re using a lot more nervous energy than if we’re relaxed, wasting energy in fact. Also our breathing can become very shallow and the amount of oxygen we’re taking in is reduced. (More about this later). All this will contribute to fatigue, weakness and aches and pains.

I think it’s fair to say that most people with polio like to do the very best they can from day to day. Even when we’re pacing ourselves, we probably plan what we can do that’s useful during our ‘rest’ periods. It might be sorting through the post, dealing with household bills, making phonecalls (and we all know how frustrating they can be these days). In fact anything to keep busy and productive. So even though we are sitting or lying down, we’re not really resting completely. At times like this we’re still active mentally and this can use up quite a lot of energy.

So what I’m suggesting is that you set aside time for a real rest, preferably twice a day for at least fifteen minutes, and use the time to practise relaxation and breathing exercises. ‘Practise’ is quite an appropriate word for it, because it doesn’t come that easily for some. You’ll probably be lying there thinking; ‘I’m sure this works for other people, but it really isn’t doing anything for me” and your mind will wander. lt’s worth persevering though, as it won’t be that long before you do notice benefit and you’ll understand why relaxation exercises are recommended so much’.

There isn’t the space here to give a lot of detail on specific exercises but there are plenty of books to choose from. There are also relaxation tapes you can listen to that will help you focus and stop your mind from wandering. It really is a matter of trial and error to see what works for you – there are no hard and fast rules – so you might like to check out the local library before you buy anything. The only word of caution I would like to mention is that one well known relaxation exercise involves tensing muscles and then relaxing them. This Is probably not a good idea for us, an It puts too much stress on the muscles. I particularly like an exercise that involves imagining the whole body feeling warm and heavy and sinking into the bed. I also find having one or two hot water bottles really cosy and comforting.

Earlier on I mentioned breathing exercises and I appreciate that some may he concerned about this. The need for good breathing cannot be overemphasised but I’ve purposely used the word ‘breathing’ instead of ‘deep”. You can improve your breathing even if you can’t breathe very deeply. This is important as we need to improve oxygen intake to help our nervous systems and our muscles, in fact every system in the body needs oxygen. The trouble is most people breathe with just their chests and this uses only about 20% of the lungs. To get more air into the lungs we need to let the midriff area expand as we breathe in. If you put your hand on your tummy at waist level you need to feel that area swell gently as you breathe in gently, and every so often you may find you.can take a deeper breath or two. For some, this midriff area can become quite tense, even affecting digestion, so breathing like this will help to prevent this happening.

Getting some fresh air into the room Is helpful too, even though we may not feel like having the windows open at this time of the year. Just opening them for a short time a couple of times a day would be worthwhile.

I hope these suggestions will he helpful to you. Once these periods of relaxation become a habit the knock-on effect can be that during the rest of the day you’ll be more aware if you do tense up and you’ll find It easier to control this. Hopefully this will result in a little more energy and fewer aches and pains. ‘With the coming few weeks being a busy, sometimes stressful time for many, leading up to Xmas, it’s perhaps a good time ‘to try for yourself.

Write to: Vivien Holland

32 Green Lane, St. Albans Herts AL3 6EZ

In Lincoln, run by Adult Education, some of us attend a ‘Gentle Exercise Class with Laughter’. Kathy is our tutor and we are a motley crew with Polio, ME, MS etc learning how to relax and gently stretch our joints. We repeat any actions/ exercises to our own limits, sometimes only one or two repeats. We are no longer alone with our problems and our chuckle muscles are the most exercised.

For more information contact Hilary.

soporific, post-lunch spot and been given a mere ten minutes, when everyone else gets at least twenty minutes? I’m not complaining, of course; it’s an honour to have been invited to speak at all in such august company.

We polios – if I may been allowed this very politically incorrect formulation (one gets sick of constantly talking about polio victims or polio survivors or even patients, or is it clients these days?) – we polios discovered very early on in our illness that in some ways we were both lucky and privileged. Lucky, because unlike those poor unfortunates with wasting

diseases like muscular dystrophy and multiple sclerosis, our recovery, though finite, was absolute in the sense that what we gained we held. This amounted to an article of faith. However frustrating and slow our progress might be, it was irreversible. Even the most severely disabled among us, even those who were quadriplegic and ventilatordependent, more often than not had a remarkably sanguine outlook on life. Of course there were those who fell by the wayside and died, but they were in the minority. It may be incomprehensible to nonpolios but we did, for the most part, think of ourselves as lucky.

But privileged? The late Professor John Vaizey, an economist, suffered as a boy not from polio but from osteomyelitis. He wrote a rather bitter but very interesting hospital memoir, and this is a quote from it:

The social class of the boys with polio was on average considerably higher than that of the boys with osteomyelitis or tuberculosis… [They] carried an air of aristocracy about them… their bodies were lean and hard and clean, and did not fester and smell; quite fortuitously, too, they carried with them the glory of President Roosevelt.

Lord Vaizey (he made good in the end) was writing about Britain during the Second World War. But the elitism of polios – their sense of being something special – was probably even stronger in the United States, the home of President Roosevelt.

The third facet of polio – after luck and privilege – might seem contradictory; and that was that essentially it made no difference to your life. No matter how disabled you were, you went out into the world and got on with living – and making a living – just like everyone else. The importance of this can hardly be over-emphasised.

I don’t think it was just because I was in the army when I contracted the disease – and was therefore treated in military hospitals and rehabilitation centres – that I see something militaristic about the way we were trained, as it were, for life after polio. Rehabilitation was undoubtedly a toughening-up process, one in which you were pushed to the limits, encouraged to go through the ‘pain barrier’ in pursuit of physical fitness, physical wholeness. Nobody then hinted at the possibility that too vigorous exercise might ultimately damage severely weakened nerves and muscles. But don’t get me wrong: speaking personally, I was a more than willing accomplice in this boot-camp approach to rehabilitation. As far as I was concerned, the tougher the better – I would’ve done anything that would get me walking again minus calipers and crutches, or sticks.

Physically, like most polios, I was obliged to compromise and accept that I would be moderatelyto-severely disabled for the rest of my life. But psychologically I was – to use the dreadful jargon – into denial. Me disabled? Try me. I overcompensated wildly, learning to fly a small plane, though my enfeebled legs could scarcely control the rudder-bar, and driving my brand new Austin A40, complete with hand controls and ‘Disabled Driver’ signs, round Devon lanes at such life-threatening speeds that locals were heard to mutter into their pints, ‘Disabled driver? Sterling Moss more like.

The polio mentality – as I’ve tried to demonstrate in my own case – might be characterised as a combination of optimism and self-confidence spilling over into bravado, a readiness to take on the world with no allowances made for any handicap.

The last thing most of us wanted, when we finally escaped into the big wide world, was to come up against any of our own kind. We rejected other disabled people as ferociously as we rejected our own disability. That rejection, indeed, was about the only thing we had in common.

All this was forty or more years ago. Things are very different now. The impact of post-polio syndrome or – as I prefer – the late effects of polio, has been profound. With people living so close to the edge physically, a minute loss of muscle power can mean the difference between walking, albeit with sticks or crutches, and becoming wheelchairdependent. Or more distressing than that, it can force people who thought they were finally shot of the iron lung forty years ago back into it, or on to some other form of mechanical respirator. And any loss of independence, that hard-won and most cherished of conditions, can have a devastating effect on morale. The truism (as we thought) that had been dinned into us, that in polio what you gained you held, has turned out to be false. With the central pillar of our creed – the mainstay of our characteristic optimism – removed, our whole world has been overturned.

This has brought about a revolution in the behaviour of old polios, particularly in the United States, where most of the post-polio discoveries have been made. Yet polios – being polios – have chosen to accentuate the positive.

The most obvious behavioural change has been that instead of shunning one another, old polios have been actively seeking each other out and getting

together in groups to discuss not just the new threats to their health and peace of mind but also their past polio experiences and strategies for coping with disability. For many, this has been a revelation. Most polios have been locked into lives of unremitting struggle for decades and have tended to regard their own situation as unique. Now no longer isolated, they ’re amazed to discover that, far from being unique, their experience conforms to a common pattern. The huge relief that particularly the more crushed among them feel on finding fellow sufferers with whom they can share their experiences, past and present, is sometimes touching to behold. Never was there a better illustration of the old adage that a problem shared is a problem halved.

Disability is of course universally stigmatised. But in America – land of youth and the body beautiful (at least in theory) – deformity seems to be a matter of even greater shame than elsewhere. When I was writing A Summer Plague, one not-very-disabled woman I interviewed in the United States was so ashamed of her condition that if she ever encountered another handicapped person in the street, she told me, she ‘died of mortification’. The very word handicapped was unacceptable. The American equivalent of our Orange (now Blue) Badge disabled parking scheme is Handicapped Licence Plates; this woman voluntarily went without them for twenty years because she couldn’t bear to be labelled handicapped. Now she happily sports handicapped licence plates and goes to meetings of the local polio society. The post-polio debate has brought her in out of the cold; it has socialised her and replaced her shame with pride – disability pride.

Of course one can go from one extreme to the other. In my view, an obsession with being disabled is quite as bad, if not worse, than a denial of disability. There’s an obvious parallel here with the gay community: there’s nothing wrong with gay pride, but an in-your-face attitude, one that sees everything in terms of what used to be called the ‘homintern’, is ultimately sterile and stultifying.

My ten minutes are nearly up. If I may be allowed a last word, I would appeal to those GPs who may never have encountered polio but still think they know what’s right for post-polio patients. I have been told too many stories of misdiagnosis and patronising dismissal of symptoms as psychosomatic to doubt that there is a lot of ignorance about the disease and its late effects even in the medical world. That is understandable: we polios have outlived our disease, we are like the survivors of some forgotten war. But the fact that medicine has succeeded in rendering polio virtually obsolete doesn’t mean that the continuing health of its survivors should be a matter of indifference to medical practitioners.

Thank you.

26th October 2000.

Seminar on PPS at St. Thomas’ Hospital, London.

A Summer Plague – Polio and It’s Survivors

by Tony Gould 1997. £14.95 at www.amazon.co.uk

Long Standing Members will not have a copy of our 30 page Information Pack that includes self assessment charts. If you would like a copy please contact Wendy. We would appreciate a book of stamps to cover the printing and postage. Thankyou.

At our AGM Jann Hartman told us about Idaho Bean Fudge and Idaho Pinto Bean Pie. You should have seen the expressions on our faces. Here are the recipes, the proof really will be in the eating.

Idaho Bean Fudge

1 (15 oz.) can pinto beans, drained and rinsed

1 cup cocoa powder

2/3 cup butter

1 Tablespoon vanilla

4 cups powdered (caster) sugar

1 bag chopped nuts (walnuts)

Puree beans in a food processor

(or mash by hand). Add cocoa, butter, vanilla, and mix well.

Gradually add the powdered sugar, and mix thoroughly.

Add nuts. Spread into a 9″ by 13″ pan. Cut into squares.

Each of 24 squares contains approximately:

144 calories but also provides:

2 grams protein, 5 grams fat, and 23 grams carbohydrates.

These recipes are compliments of the Idaho Bean Commission. Neither of these recipes are for everyday. But, they can add a little more nutrition to holiday foods.

JKH – Jann Hartman <jann@home.com> Baltimore, Maryland, USA.

Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Membership – Requests for Information Packs, Leaflets, copies of articles Hon. Sec. Wendy Grimmitt <CWGrimmitt@aol.com>

12 Larch Ave, Allington Gardens, Allington, Grantham, NG32 2DR

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request)

Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

European Membership – LM £125 – Member £12.50 a year – Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail.

(US$ checks to Lincs PPN. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA) Other Countries please contact for details.

All other correspondence and enquiries – items for newsletters – to

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK Tel: +44(0)1522 888601 Fax +44(0)870 1600840

Next LincPIN Newsletter – February 2001

Articles for publication by January 20th – Publication date 5.2.2001 Founder & Chair – Hilary Hallam <linpolio@legend.co.uk>

Vice Chair – Janice Eary <janice.eary@hotmail.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Honorary Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com> Committee Members – Phil Bilton, John Eary, Ted Hutchinson, Jennifer McGowan.

IDEAS FOR XMAS

Pinecone Firelighters/Decorations

Pinecones wax crayons

scented oil (cinnamon, bayberry, apple jack, etc)

Gather large pinecones. I use old candles and also pick up used candles at garage sales and thrift stores. Sort candles by color. You want to end up with shades of red, green, burgundy, etc. I put wax in a large coffee can and sit it in the electric skillet until wax is just melted. Add the appropriate crayon color for the color you want. Add fragrance. Cover kitchen counter or work table with waxed paper. With kitchen tongs dip pinecone into wax. Hold over can and let excess drip off. Place on wax paper to harden. Redip cone until covered with a thick coating. If the wax is too hot it will melt the first layer off. Practice will make perfect.

These pinecones are for firestarters, but smell wonderful and look great on the fireplace or by a stove in a basket with large bow and green pine needles. I’ve seen the very large cones in gift shops for $9.00 each.

MarySue “msb1037” <msb1037@msn.com>

More pinecone ideas…

– tie metallic ribbon/rope around pinecones to make a string of cones leaving enough ribbon on the ends to tie and use this as a curtain tie-back – very country and festive, only do this if your pinecones are completely dry or else the sap may ruin your curtains

– take a Styrofoam ball and glue small pinecones all around, wrap ribbon around to cover the empty spaces, tie at the bottom. Take some mistletoe and tie that to the bottom of the ball, attach ribbon to the top for hanging and you’ve got a kissing ball!

– glue small pinecones to wire ribbon, bend ribbon into circle shape and you’ve got a napkin ring; I like to go the extra step and bend the ribbon into a bow shape

– tie string to pinecone, cover pinecone in peanut butter, roll in birdseed, attach red/green ribbon to top for a festive birdfeeder

Ms Qué <qbanh@home.com

Linc Pin Volume 3 Issue 2 Read More »

Linc Pin Volume 3 Issue 1

The Lincolnshire Post-Polio Information Newsletter Volume 3 – Issue 1 – October 2000

WebSite – http://www.ott.zynet.co.uk/polio/lincolnshire/

This issue is dedicated to the life of Denis V. Mardle, C.B.E.

25th September 2000 Department of Health’s position on PPS.

In the current edition of their magazine The Bulletin, the British Polio Fellowship (BPF) clarifies the Department of Health’s position on post polio syndrome. In correspondence with the BPF, Yvette Cooper, Parliamentary Under Secretary of State at the Department of Health, writes:

We are aware of the emergence of evidence that post polio syndrome is affecting survivors of epidemics earlier this century.

Polio was previously considered to be a self-limiting disease, once the acute stage was over. The amount of residual damage determined the degree of recovery, which was thought to be stable once optimum function had been achieved. However, it is now well established that polio has a second, slowly progressive degenerative phase, unrelated to normal ageing. This second phase may become apparent many years after the initial infection.

As time passes, an increasing number of previously “stable” persons with a history of polio infection report unexpected new symptoms. The time lag from the initial infection to the second phase varies but is commonly approximately 30 years.

The onset is usually slow and steady. It may occasionally develop suddenly and progress at an irregular pace. Symptoms sometimes commence after a period of physical or emotional strain, or after a period of immobility, e.g. disease or surgery.

Yvette Cooper has given the BPF permission to quote the above text. The Lincolnshire Post-Polio Network are grateful to both the BPF and the Department of Health for their permissions to use the same text for informational purposes.

EDITORIAL By Hilary Hallam

Annual General Meeting. 34 people attended the actual meeting with 18 staying over at the IBIS Hotel. The minutes will be sent with your next newsletter but to bring you up to date here are a few facts from the meeting.

Precis of Chairman’s Report. Christine Ayre apologised for being unable to do much of the work this year due to ill-health. In the last couple of months a couple of TV programmes have featured PPS which has highlighted the condition.The Healthcheck Watchdog programme resulted in 68 enquiries to which we responded with Information packs and from this we have had 14 new members. Funds are the biggest problem for the Charity. Hilary’s daughter Alison was thanked for organising a truck pull which raised over £500. Membership has increased this year and we now have 41 Life Members, 28 Overseas members and 207 ordinary members. A total of 84 are at present due for renewal.

Voting then took place with additional nominations coming in from the floor and the results are:-

Chairman	Hilary Hallam
Vice Chairman/WebSite Administrator – Chris Salter
Secretary	Frank Grimmitt
Treasurer	Wendy Grimmitt
Members	Phil Bilton, Janice Eary, Ted
Hutchinson	and Jennifer McGowan.

As your new Chairman I would like to start by thanking a few people. Our retiring committee members – Christine Ayre, Bud Robinson, Myra McManus and Jean Tapper – for their support over the last year. Jean is now on the committee of the Lincolnshire Association of People with Disabilities which means we shall still be in touch on a regular basis. Our Vice-Chairman and WebSite Administrator Chris Salter for his work on our growing WebSite which continues to receive high praise from many sources. We have been asked why this post remains with Chris and its simply that he does all the work on a voluntary basis and our organisation would not be what it is without his expertise. Our co-opted committee members Wendy and Frank Grimmitt have now taken the posts of Secretary and Treasurer. I am especially grateful to Wendy for taking this post allowing me to put the energy it has taken doing the administration work and preparing and sending out Information packs etc., towards other work. Committee member Phil Bilton ‘our Gopher’ who is always there in the background working hard. A special thankyou to Marie Lee from Blackpool who worked almost non stop at the AGM preparing the food for our buffet and making sure the teapot was hot. I have received so many comments on the excellent colourful way the food – bought from ASDA – was presented. I would also like to thank all those who joined us for the day and weekend and for the help given. Saturday evening investigating King Edward III’s underwear and armour was particularly interesting and my thanks to

CONTENTS

Editorial – page 2

Life with Denis – Polio Survivor for 55 years – page 4

Details of – South Lincolnshire Healthcare Trust Equipment Awareness Day November 1st 2000 – Springfield House, Springfield Business Park, Grantham

Details of – Pathophysiology and Management of the Post-Polio Syndrome: A Critical Review. One day course for Consultants, GP’s and Allied Professionals

at the Lane Fox Unit, St. Thomas Hospital – October 26th 2000 – page 7

Article – Strategies for Management of Arms and Shoulders by Mary Ellen Brown, RPT and Nancy L. Caverly, OTR/L page 8

Sleep Difficulties by Member Philip Dalton – page 11

Nutritional Therapist Vivien Holland DNN writes…about Constipation page 12

Report on Talk on PPS and Nutrition at our AGM by Jann Hartman,USA – page 13

Drugs to Watch Out for with Post Polio – page 14

Polio Biology XI – The Biology of Fatigue – Library addition – page 16

Illusions by Judy Sander page 19

Network Spinal Analysis – page 20

Helpers Simply Helping Simply by Art Coburn – page 23

Articles added to Lincolnshire Post-Polio Library since last newsletter – page 23 – 24

Tony Meladio – who has been King Edward III for over 20 years as a re-enactor – for bringing his ‘full body orthotics’ for us to see.

Finally I would like to welcome our new committee members, Janice Eary, Ted Hutchinson and Jennifer McGowan and thank them for offering to join our team from the floor of the AGM. We hoped we might get one new member but three surpassed our wildest dreams. There is a new wealth of expertise and a sub-committee will be formed to fund raise and obtain grants to further our work and purchase office equipment for the Charity. Up till now apart from the WebSite computer purchased by three firms in America we have been using our own equipment which is now well used, out of date and warranty. We look forward to telling you next newsletter of our plans for the year. Coffee mornings are a good way to raise some funds and spread the word about PPS, if anyone would like to do this then please get in touch so that we can send you some extra information.

I would like to clarify a query that has come from a non-member who reads the odd newsletter. Attendance at PPS Conference costs have not been paid for by the LincsPPN. Money towards travelling to the States and presenting at the GINI Conference this year was received, as a donation for that purpose only, from members – both in the UK and overseas – from Lincolnshire Health Authority and Lincolnshire County Council and from my family. There was also the generosity of the people that we stayed with enroute without which the trip would have been impossible. Once again my thanks for their support in our quest for more information.

On my return I wrote my story diary style, from notes that I had made, as I had on previous trips, adding some humourous pieces here and there to lighten it up. I have received many compliments on the content, admiration for even attempting a road trip of nearly 3,000 miles – the cheapest way – to meet up with more PPS specialists and PPS Groups, and been asked how did you manage it? PPS is hard to accept, changing from the fast lane of my life to the slow lane is not something I planned for or want. Not being able to just get up and go but having to plan ahead all the time is very tough. It does not mean that you cannot put in times where you know you are going to overdo if its what you want to do and you know it will give you a huge boost from the achievement of doing it. There was no going out at night, there was very little ‘tourist time’ and being honest not enough resting time and I had to manage on the small amount left once bills are paid as I do in the U.K.

Meeting – 16th August Neurosciences Forum with Lincolnshire Health Authority. Unfortunately much of the meeting was taken up by a presentation about the merging of two NHS Trusts. However

more discussion took place on how we can move forward in obtaining better neurological support in Lincolnshire. Andy Rix – the LHA representative – also a qualified nurse and a carer for his wife who has a neurological condition – told us that he was now beginning talks with various people towards our goal.

Meeting – 4th October in Birmingham. I attended as the representative for the Lincolnshire Neurosciences Forum an Inaugural meeting of regional neurological support groups. This meeting was very productive with groups detailing how they had started and why. We all gained pieces to add to the jigsaw of our work. A full report is being sent to Deborah Jaines at Lincolnshire Health and more information will be forthcoming following the next meeting on November 16th in our next newsletter.

Neuroscience Support Group Seminar 7th October at Queens Medical Centre Nottingham. I manned a stand for the LincsPPN providing information on PPS. Three attendees took information for parents who had had polio. Many therapists took a new ‘leaflet for Health Professionals’ with many saying they did not know of its existence. Three Occupational Therapists – one who knew of our work

– asked for more information, links to their website

and a talk to be given to their local OT’s. The

organisers of this day were particularly helpful and

brought various ‘Professors and Doctors’ to meet me

so that I could explain the work we are doing. I look

forward to taking up their offers of contacting them

again to further the short discussions we had.

Our thanks to the family, friends and work colleagues

of Denis V Mardle CBE for the generous donation of

£800 in memory of his life, and especially to Helen

George his daughter for telling us about her father.

Starts at page 4. Denis was truly a ‘High Achiever’.

Fund Raising Polo Shirts with embroidered Logo

are now available. Christmas will soon be with us,

why not help our funds and promote our charity by

buying a Polo Shirt. They are white polyester cotton

65/35%, collar, three button, shirts with a breast

pocket located embroidered logo of 13,500 stitches as

the front of this newsletter. Sizes available are S 34 –

36, M 37- 39, L 40 – 42, XL 43 – 45, XXL 46 – 48,

XXXL 49 – 51 and are priced at £10 with the Logo

on, and £13.50 if you wish your Christian Name to

appear below this. Please send your orders and

cheques, which include postage direct to you, to the

LincsP-PN.

FINALLY – Information check sheets are enclosed. Please notify us of any errors and if something does not arrive as expected then please give us a ring ASAP.

Dennis V. Mardle C.B.E. Life with Denis – Polio survivor for 55 years by Helen George.

Denis met my mother through the R.S.P.B. bird watching society in 1979, they were married within six months. We soon learnt a lot about Denis, the difficulties and the achievements. We loved and accepted him into the family, especially because he made our mum happy.

On the Day he contacted polio (aged 15) he had been to a football match (To see his beloved Luton town). On reflection he realises that he must have drunk from a cracked cup, because that evening the middle of his spine felt like it was on fire ! It did affect his lungs and left a permanent weakness, but he did not have to be tied to an iron lung. I think that during his twoyear stay in hospital he developed his incredible strength and courage to make the most of life. He must have had such admirable determination to further develop his brainpower as he went on to achieve great levels of academia, and make great contributions in his workplace.

I believe he made full use of what was available for him; he would not let his disability get in the way of going places or doing things. His arms and shoulders were his focused mobility and when his wheelchair would only take him so far, he would use his crutches to get that bit further. He did have to wear a body support, he said that sitting up was not comfortable for him without it, it was made especially to suit his body shape. He also had a calliper on his right leg, which helped him to be stable and walk in a shuffled sort of way.

Around the time that my mum died, 10 Years ago, when Denis was 60, I took on being Denis’ carer, I noticed a gradual deterioration in him. At first he would talk of feeling nervous about walking across the room with his crutches. Then he mentioned more frequently that his hands felt clumsy (Age 64) and there didn’t seem to be so much strength in his arms. It was around this time that sliding boards were introduced. It wasn’t long before he didn’t use his crutches at all (Age 65). Doctors took X-rays and said that both of Denis’ shoulders were Arthritic and there was nothing that they could do about them periodically dislocating. He would ask for a massage when they used to get really sore, the joints would sometimes twitch and crack, so massage would have been too harsh, sometimes I would just hold his shoulder in-between my hands and hope that the T.L.C. was getting

through.

It was also around this time that Denis had two overhead hoists put in the bungalow, one in the bedroom and one in the bathroom. Up to this point Denis had a procedure for having a bath that he was able to do independently. He adjusted quite well to needing more help for his bath and things in general. He had a carer come every morning to help get him up. The days I spent with Denis were quite slow; this was mainly because we were going at Denis’ pace, I could see how vitally important his independence was and besides he loved to chat and reminisce while we were taking our time to doing things anyway.

Denis continued in this vein, although weakness and pain must have been gradually setting in. Denis turned Three Score Years and Ten Last Year. I think he realised that he had done well to live to this age and sometimes would worry that his memory wasn’t as good as it used to be.

I would reassure him that, Its not that you get more forgetful ~ Its just ‘As you get older you have more things to remember!’ And besides ~ I am 42 and Denis knows ten times more information (Or more) than I do, so forgetting what somebody who you met 40 years ago was called, is not a sin. Denis would worry about it and ask me to dig out a book or something so he could make reference to it, until he had remembered.

Around Mid winter he also started to worry about getting himself into bed at night. He had managed quite adequately before, although I believe the whole process would take him a couple of hours. He had a lifeline alarm that he kept around his neck at all times, he had to use it at night on several occasions, this made him realise that he needed even more help.

We made some enquiries about ‘live in carers’. It made sense to have some one live in and be there all of the time. At the beginning of this year Denis had to make many adjustments, it was difficult for him at first to get used to a carer and allow them to help him. They would always use the hoist, as this would prevent their backs from harm and Denis from being in too much pain with his shoulders.

Around this time I began to notice that Denis would get quite agitated, he wasn’t really himself and would sometimes upset me. I talked with the doctor and after checking him over; he said it was just anxious adjustment? After a short

while he ceased the agitation, and started to be more tired than normal? There were a few incidents when he had visionary experiences, and made some reference to religion (not normally a follower of anything except maths and science). His eyes would sometimes roll and he would either fall asleep in the middle of talking or just not hold a very long conversation.

I wanted Denis to see a doctor, but he insisted it would wait till the end of the week when he had an appointment anyway. The following morning the carer phoned me and we all rushed to hospital. I found myself getting very agitated, because Denis was given an oxygen mask and was left in a queue to see the doctor? After 5 hours I went to get some fresh air and Denis had a Pulmonary Arrest! Suddenly Denis went up the queue of importance and was resuscitated and taken to the intensive care unit. I was given a lot more respect and given explanations.

It was a crucial time and Denis did pull through, although it did result in him having a tracheostomy. It was at this time that I scoured the Internet for information on Post Polio complications late in life. I took in an article about pulmonary dysfunction for Denis to read, He told me later that the doctors were very interested in looking at the article as they admitted to knowing very little about post polio syndrome.

I had told Denis how worried we all were, when he was more ‘with it’, he wrote down “I am not that weak!” and gave one of his wry smiles. He even told a joke to my sister Lyn when she visited.

When Denis moved from Intensive Care they wanted to do more tests. After exploring many avenues, they discovered that he had a condition called ‘Sleep Apnoea’. On his chart it showed that Denis temporarily stopped breathing 179 times in one night. Yet again I scoured the Internet and took more reference for Denis to read. I wanted at this point to encourage him to get in touch with a doctor that was more familiar with polio symptoms. There was mention of St Thomas’s in London, the hospital contacted this place and he was referred to Standish Hospital near Stroud for CPAP treatment. Denis was rather confused at times, where he was going or what he was doing, it became more difficult to have detailed lengthy conversations, he would also continue to get agitated at times.

The move to Standish was arranged and the CPAP treatment was explained. I believe Denis had quite lengthy talks with two CPAP Doctors. In Denis’s process of thought he decided to refuse the CPAP treatment and said

that: “He would rather die peacefully soon ~

T h a n b e k e p t a l i v e i n h i s

Deteriorated and Dependent state by the treatment”

The hospitals attitude changed and they sent Denis home; it is what he had wanted after being in hospital for six weeks already. I did feel however that they appeared to be washing their hands of him! He was sent home with no medication or recommendation for assistance in his condition. From the words of a nurse came: “We have plenty of sick people who want our help, we haven’t time to waste”

Denis had made the choice to go home and die! I think he approved of the treatment but took an opportunity to give up the battle against his other deteriorations. His long-term polio strength had run out! He knew it was going to happen soon. I sent a ‘help us’ plea to the Lincolnshire Post-polio network who got in touch with Denis and was arranging for someone to visit him.

The first week Denis was home from hospital he was happy, although it was not long before he began to get agitated again. I asked his local doctor if a little oxygen would help him be more comfortable. It was explained that in refusing the treatment, which was oxygen assistance, the doctor could not do anything unless Denis consented. I explained my concern and worry to Denis, he didn’t want to talk about it and got agitated and angry with me for bringing it up.

He didn’t want to talk about much at all, conversations were short and self focussed. He would frequently fall asleep in the middle of

talking. He would keep on saying that there

was no time to do the things he used to do! Sometimes his eyes would roll and during the last week of his life he asked if we could see the horse in the garden? Another time when I was elevating his legs on to a cushion he asked if I could see the flames coming out of his feet? I gently held them for a while and did my ‘channel healing thing’ and said, “Your feet are telling me that they are happily resting now” This was the last ‘with it’ time I saw Denis.

The Day before he died he spent the afternoon in the garden and talked to the carer a lot about the nature and wildlife that visited his garden, apparently he also said to the carer “God is here you know!”.

He was due to go to a six-week follow up appointment with the specialist at the hospital on the very morning that he died. When the carer had tried to wake him, he was delirious, so we all rushed to hospital. Pneumonia had set well in to

one lung, it was a wait and see time. We did not have to wait too long because two hours later he arrested and died. It was peaceful; it was, as he had wanted.

AFTER THE LIFE OF DENNIS

Denis was an avid reader of the Times; he would regularly read the obituary column (lots of people do!) Denis implied once to me that he’d like me to notify them when it was his time. Thanks to the Internet I was able to contact the Times and here is a copy of my article.

The Times – 15th August 2000.

DENIS MARDLE C.B.E.

A polio victim who became an extremely talented mathematician and chess player.

DENIS MARDLE, died peacefully on July 31st, a week before his 71st birthday, he was a talented mathematician who became one of Britain’s leading cryptanalysts. A victim of polio from the age of 15, he remained heavily disabled for the rest of his life and could move only slowly with crutches and leg callipers In spite of these adversities he was by nature cheerful, courteous and sociable.

Denis Victor Mardle was born on August 9th 1929 and spent his childhood in Luton. Denis was educated at Denbigh Road Elementary School and Luton Grammar School, where he passed his school certificate exams, just before his fourteenth birthday. In the Science 6th form chemistry was his strongest subject, but that changed after his illness. From the autumn of 1944 he spent nearly two years at the Royal National Orthopaedic Hospital, Stanmore. With great help and encouragement from his headmaster, K. B. Webb, he returned to the 6th Form, where burly fellow pupils carried him up and down stairs when necessary. He now concentrated on maths with a new determination, and also managed to master School Certificate Latin rapidly in order to gain admission to Cambridge. Entering Christ’s College Cambridge to read mathematics in 1948, he obtained his B.A. in 1951 and went on to do a diploma in statistics the next year.

Meanwhile, his abilities as a chess player were developing and he was a regular member of the Bedfordshire and Cambridge University teams. It was at an Oxford v Cambridge match that he was “talent spotted” by C. H. O’D Alexander, then head of the Cryptanalysis Division of G.C.H.Q. Denis joined the Eastcote establishment in 1952; It was in the local chess club, that he met Barbara Lally, who was to become his first wife. He was soon moved with his colleagues to Cheltenham, where he and

Barbara lived for many years. Sadly Barbara died from cancer in 1972, Denis lived alone for seven years.

Denis Mardle was initially appointed to GCHQ as a research mathematician and made a number of contributions that are still held in high regard in both the UK and the US. A steady succession of promotions followed, from Senior Scientific Officer up the ladder to Deputy Chief Scientific Officer. In 1969 he directed the Mathematics Research Group before being promoted to Chief Mathematician in 1973. Denis and his colleague James Ellis made significant contributions to signal processing for radio direction finding at about this time, anticipating the development of the MUSIC algorithm by Schmidt in the USA by several years.

Denis continued his interest in chess for many years, partly by means of correspondence games but also in league matches. He also competed in the British Championship twice, played once for England and often took part in the Hastings tournament. It was here, in about 1960, that he scored a brilliant victory against the Grandmaster Gligoric.

While Denis was living alone his interest in ornithology grew. It was through the R.S.P.B that he met his second wife, Freda Storie, she bought colour and sparkle to his life. They married in November 1979; in 1981 they moved to Teddington near Tewkesbury, they lived here for 10 years. Sadly Freda died of a heart attack in May 1991.

In 1982 he was appointed Head of the Cryptanalysis Division, with considerable responsibilities for planning and staff management. In March 1988 he was awarded a CBE for his overall contributions. He retired officially on his 60th birthday in 1989, but continued with administrative tasks. Later, in full retirement, the Internet provided him with a window on the world, including the interpretation of the mysterious Voynich Manuscript.

In the last year or two of his life Denis battled against a deteriorating body with breathing difficulties. Although he lived alone after Freda died, he received much help and support from Freda’s children. He had no children of his own. Daughter Helen who lived nearby was able to look after his domestic needs and make his last years comfortable and relatively happy.

Denis Mardle was born in Luton on August 9th 1929. He died on July 31st, aged 70. Cont. overleaf. I am spending my days missing Denis and cataloguing all of his books, it is a task and a half I can tell you but I am enjoying it because it is helping me deal with my grief. At one point I felt devastated that all of Denis’s knowledge had

gone! I have realised in looking through his books the knowledge is still there and this has comforted me a great deal. I am also beginning to see myself as lucky that I knew Denis and got to spend a lot of time with him. His funny ways would exasperate me sometimes, now they just make me smile.

Helen George. <storiefm@btinternet.com>

Editorial Note.

The Lincolnshire Post-Polio Network would like to extend a huge thankyou to the family, work colleagues and friends of Denis Mardle whose donation in memory of his life totalled £800. This will be put towards continuing our efforts to promote the awareness of Polio’s late effects and requested provision of specialist PPS multidisciplinary assessments. The more we all – health professionals, polio survivors, carers, family and friends – understand about polio and PPS and the treatment, advice and equipment that is recommended by PPS Specialist Clinics in other parts of the world the longer and easier we will all be able to manage the remainder of our lives. I am only sorry that I only got to talk to Denis on the phone, he died two days before we were due to meet.

TELL YOUR HEALTH PROFESSIONALS

ABOUT THE FOLLOWING

ONE DAY COURSE

Thursday October 26th 2000

Pathophysiology and Management of the Post-Polio Syndrome: A Critical Review.

Postgraduate Centre, St. Thomas’ Hospital,

London SE1 7EH.

ORGANISER – Adrian J. Williams for The Lane-Fox Unit’s Post Polio Centre.

Programme:

9.30 – 10.00 Coffee and Registration.

1 – Polio Revisited – Robin Howard.

2 – Post Polio Syndrome – The U.S.

Perspective – Anthony Windebank. Break.

3 – The Post Polio Syndrome – The U.K.

Perspective – Adrian J. Williams.

4 – Post Polio Respiration – A. Craig Davidson.

5 – Post Polio Sleep – Adrian J. Williams.

Lunch.

6 – The Patient’s Perspective – Tony Gould.

7 – Orthopaedics – Prof. F.W. Heatley.

8 – Spinal Surgery – John O’Dowd.

9 – Psychiatry – Andrew Hodgkiss.

10 – Rehabilitation – A. Craig Davidson.

Summary and Close – Adrian J. Williams and Robin Howard.

Course Fee: £50.00 for consultants and GP’s. £30.00 for allied professionals.

For Registration Form contact Mubina Issaji;

Tel: 020 7928 9292 Ext 3581

Fax: 020 7401 8591

Email: Mubina.issaji@kcl.ac.uk

South Lincolnshire Healthcare NHS Trust – Specialist Services Department present Equipment Awareness Day

Wednesday 1st November 2000

Spring field House, Springfield Park, Grantham, Lincs.

See the latest equipment and products available – 24 companies.

Come to our ‘Open House’ and meet the staff of the Specialist Services Department at Unit 127 Springfield Park. Free transport between here and Springfield House.

Attend one of our seminars

10.00 to 10.45 – Assistive Technology

10.55 to 11.30 – Pressure Reduction

11.40 to 12.10 – Direct Payments/Independent Living

12.20 to 1.00 – Wheelchair Service – Fitting and General Maintenance

1.00 to 1.45 – Repeat of Assistive Technology

1.55 to 2.30 – Continence

2.40 to 3.15 – Repeat of Direct Payments/Independent Living

3.25 to 4.00 – Voucher Scheme & Electric Powered Indoor/Outdoor Wheelchairs.

Program is subject to change.

Eighth International Post-Polio and

Independent Living Conference

St. Louis, Missouri, June 8-10, 2000

STRATEGIES FOR MANAGEMENT OF ARMS & SHOULDERS

Mary Ellen Brown, RPT and Nancy L. Caverly, OTR/L

POSTURE & ALIGNMENT

1. Keep your arms in good alignment. This

allows improved function, minimizes stress and

pain. To have your arms in proper alignment

requires good postural alignment of the entire

spine and good stabilization of the shoulder girdle

muscles. In other words, SIT UP STRAIGHT with

chest up and shoulders back and down!

2. To have good posture and a stable position of

the spine requires functional trunk strength and/or

custom seating to support the back while in a

seated position and possibly a custom brace for

upright positions instead of just standing.

3. Learn RELAXATION techniques for neck,

shoulders, arms, wrists and hands to avoid

fatigue from tension and to prevent unnecessary

muscle overuse from muscle stress. Explore a

variety of relaxation techniques, for the resting

body, to find one suitable for you. These may

include meditation, listening to music, creative

visualization, and/or taking a class on stress

management. Deep relaxed breathing is

essential. Note: relates to LIFESTYLE, also.

4. Do a daily stretching routine to maintain good

mobility of joints and muscles. If you cannot do

these exercises yourself, have someone do them

with you.

FINE MOTOR/ HAND TASKS

1. Make sure your hands are comfortably warm

to facilitate improved function and relaxation.

Sometimes gloves with the fingertips cut off are

helpful.

2. Become more ambidextrous, alternating use of

right hand and then left. Don’t make the same

muscles do everything.

3. Make sure your glasses are adjusted to avoid

strain on your neck and shoulders. Remember

your postural alignment will shift to enable you to

see.

4. When turning pages of a book, use a rubber

eraser on a pencil to decrease use of fingertips,

or use a mouth wand to eliminate upper extremity

(arms, shoulders) demands altogether.

5. Adapt writing implements and other tools so

that your hand is supported and comfortable

rather than held in a tight pinched grip or awkward

position.

6. When picking up light objects with your hands,

mold your hand, using the strength of the palm

muscles rather than pinching with the thumb and

fingertips.

7. Prevent pressure on the thumb side of your

fingers. Using hands incorrectly pushes the

fingers away from the thumb into a deforming

position. For example, hold purses and bags on

the forearm instead of with the fingers.

8. Use scissors to open packaged foods, letters,

tightly sealed packages. This reduces hand

strain.

9. For drinking, try using a straw with the cup,

can or bottle resting on a tabletop to avoid a

sustained grasp.

10. Check the ADL section of catalogs such as

Sammons Preston or Smith Nephew for self help

devices for kitchen, bathroom and other needs.

There are wonderfully helpful things to make life

easier from one-handed potato peelers to book

racks to portable toilet seats to graters on suction

cups, etc., etc., etc. Regular stores may have can

openers, jar grabbers, etc.; also, JC Penney and

Sears have catalogs for “Special Needs”.

LIFESTYLE / STRESS MANAGEMENT

1. During rest breaks in mid-morning and midafternoon, make sure your arms are resting, too.

Holding a book to read while relaxing the body

doesn’t rest the arms.

2. DELEGATE chores that are too demanding

such as vacuuming, mopping, scrubbing,

chopping, stirring, gripping. “if you have four

things to do today, pace yourself to do one in the

morning, one in the afternoon, one in the evening,

and delegate the fourth. That’s one of the

reasons we have friends and family.”

3. Do deep breathing exercise frequently for

relaxation and good oxygen supply to the tissues.

Use respiratory assistance if necessary.

4. Eat a healthy well balanced diet low in

animal fat and high in vitamins and minerals from

fruits, vegetables and grains. Add extra high

quality protein for neuromuscular maintenance.

5. Make sure you get plenty of sleep regularly

to allow your body to repair itself from any effects

of soft tissue micro trauma.

MOBILITY

1. Avoid stairs! Banisters may help legs

(lower extremities) but they only strain upper

extremities. Use elevators or escalators, if your

balance is good enough.

2. Sit in chairs that have sturdy armrests and

that are firm. Avoid soft couches as you will really

strain your arms getting up and down. One

exception to the couch rule — if you are on the

floor, maneuver yourself to the nearest couch, put

your arms up on the couch, and then roll yourself

onto the couch. This is usually easier than trying

to rise from the floor.

3. Avoid falls!! No matter what you might hurt,

your upper extremities will pay the price. If you

hurt a leg, your arms will be stressed using

crutches. If you hurt an arm, you will become

more dependent. Some fails are impossible to

avoid, but many could be prevented by using the

proper bracing, treating medical problems that

cause dizziness or balance difficulties. When

getting new glasses or trying new medications, be

very careful as perceptions and orientation to

space may change. Also avoid fails by keeping

your environment safe by eliminating clutter,

staying off slippery floor surfaces, getting rid of all

throw rugs. Stay inside on rainy or snowy days.

If you have to go out in inclement weather, always

carry a small towel to wipe off the bottom of

crutch or cane tips when you go inside.

ENERGY CONSERVATION FOR SHOULDERS

1. When using upper extremities for any

activity, take a break at the first sign of fatigue.

Do not wait for pain. Take frequent stretch and

rest breaks — at least every 15 minutes with any

activity.

2. When lifting anything heavy, use both

hands and have object close to Your body to

decrease stress on shoulders.

3. When reading a book, support the arms with

Pillows or with well-positioned armrests. Prop the

book on a slanted reading rack or similar prop on

a stand.

4. Use a headset for telephoning to keep neck

straight and eliminate need for using arms and

hands. Get comfortable in a recliner chair or lying

down and enjoy Your chat!

5. Alternatives for heavy Purses or bags are

fanny packs (bum bags), backpacks, large jacket

pockets. Leave Your Purse (Handbag) in your

vehicle when shopping, carrying cash, checkbook

or plastic in your pocket.

6. Large Pockets, belt loops are good places to

relax arms when standing; rest arm on a fanny

pack at your waist or place arms on top of your

head for a few minutes. Pillows are essential for

arm support when sitting or lying down. Arms are

very heavy, so get rid of their weight by

supporting them on whatever is available.

7. Avoid unnecessary carrying by putting

duplicate supplies in several areas, such as

towels, sheets, cleaning supplies in each room

where they will be needed.

8. Eliminate ironing from your life by buying

permanent press clothing and hanging garments

on hangers when still partially damp from the

dryer. If clothes must be ironed, rotate iron on

and off of the garment without picking it up each

time.

9. Use reachers for picking up light objects off

floor or other places. Remember the length of the

reacher increases the lever arm, so it puts more

stress on the shoulder when lifting. Do not try to

lift heavy objects.

10. If your legs are getting a little weaker and it is

getting harder to get up and down, don’t strain

your arms to get into an upright position. Use

pillows in chairs to raise the height of the chair a

little or get a chair with a hinge mechanism to lift

you part way up Out of the chair.

11. Raised toilet seats make getting up and down

easier; now there are even adapters to lift up the

height of the toilet itself.

12. Using a regular toilet in some restrooms is a

real challenge, so always wait for the

handicapped accessible stall. The toilets are

higher and there is more space for maneuvering

your body, using grab bars. These stalls are for

“walkers” as well as wheelchair users. Note: Alert

the facility to any problems with accessibility in

the restroom.

13. Get a bathtub seat than can be lowered and

raised hydraulically into the tub. Don’t try to use

arms alone to get in and out of the tub if your legs

can’t help very much. That is too scary and too

much stress on your arms and shoulders! Use a

sturdy seat in the shower so you can relax and

enjoy the water.

CHOOSING ASSISTIVE DEVICES (ASSISTIVE TECHNOLOGY)

If you are beginning to need assistive devices for walking, think about this very carefully. The use of canes, crutches, walkers and manual wheelchairs will be putting more demands on your upper extremities that already have a full time job.

1. If the need for a cane begins to arise

because you need extra security with balance,

get a cane with an anatomically correct handle.

You can get a right-handed or left-handed cane,

also, depending on which side you need support.

Collapsible canes are available for those special

occasions when you are feeling a little insecure.

A cane with a seat allows you to sit when

necessary.

2. A better choice, if you are beginning to

feel weaker, would be very lightweight forearm

crutches. (One supplier is Walk Easy 1-800-441-

2904.) These will be less demanding on the

upper extremities than trying to take weight off

the legs with a cane that is not secure. If you are

having increased hip weakness, you definitely

need to obtain forearm crutches, as no brace will

help the hips. When standing at rest with

forearm crutches, rest forearms on cuffs, to

relieve stress on hands.

3. Be sure you use any lower extremity

bracing that may increase your stability and

security, as this will decrease the need to

depend so much on crutches and canes which

stress the joints and muscles in the arms. This

will decrease the chance of failing.

4. Walkers are a good choice for assisting

weak legs with your arms. They are usually

more stable and you can carry other things in

baskets or bags that hang on the walker. Also

available are wheeled walkers (4 wheels) with a

seat, tray and shelf space that are useful in your

home, the mall or craft fairs.

5. For longer distance mobility, you may

need wheels! If your arms are really strong, a

manual wheelchair may be an option, but again,

great demands are placed on your upper

extremities. The shoulders, elbows, wrists, and

hands are working hard to propel all of you —

plus the wheelchair. If this choice works for you,

the wheelchair needs to be very lightweight and

the width of the chair needs to be narrow enough

to allow your arms to be as close to your body as

possible, for better mechanical advantage in

propelling the chair. Keep a friend close by to

push, in case you get tired.

6. To make life a little easier and decrease

the demands on the upper extremities, adding a

motor to your wheels makes good sense. There

are attachments that can be added to manual

wheelchairs to convert them into motorized

chairs for short distances. There are many

brands of motorized scooters available; choose

one according to your need. The scooters put

demands on your upper extremities in that you

need to be able to steer them but this, in most

cases, would be easier than propelling the chair.

You need to have fairly good trunk control to stay

balanced in the chair/seat.

7. If your upper extremities, trunk and lower

extremities are all feeling weaker and fatigued, a

motorized wheelchair is certainly the least

demanding physically on the upper extremities of

any mobility device. Custom seating can be

developed to support spine and upper body in a

more stable position allowing the upper

extremities to be more functional with less

fatigue. Sometimes a tendinitis can develop in

the thumb and fingers from operating the

controls of a motorized wheelchair, so the upper

extremities always have some demand unless

you get into advanced computer technology.

TECHNOLOGY CHALLENGES

If you have joined the folks in the fast lane and are using a computer, the demands on your upper extremities have just multiplied many times, and could be the subject of a two-day course! The “normal” population in our country is suffering at epidemic proportions from repetitive strain injury (RSI) from many hours at the computer. Over 62% of all workplace injuries are now for upper extremity repetitive strain injuries related to computer work. So. if the “normal” population is having this much trouble with their arms, we, the polio population, need to take our time at the computer very seriously. Because mobility is a problem and the computer can do so much for us, DON’T SACRIFICE YOUR ARMS in the process.

1. Get an expert in ergonomics (an

occupational therapist, physical therapist or

others) to set up your workstation.

2. Make sure your chair supports your

spine in neutral, so that your shoulder girdle and

upper extremities are in good alignment. Use

well positioned armrests to support the weight of

your arms. Your feet should be supported, using

a footstool if necessary. If you are a wheelchair

user, have your workstation designed around

your chair.

3. Take a 5-minute stretch break at least every

15 minutes with micro breaks more often. Limit

the overall time you spend at the computer to 4

separate hours per day, depending on your

strength/weakness.

4. Consult your ergonomic specialist

frequently with any problem that gives you pain

or causes fatigue.

A REMINDER – If you develop any pain, increased weakness, excessive fatigue in the upper extremities, and reasonable amounts of rest do not decrease the symptoms, get a medical evaluation and begin treatment as soon as possible. Many upper extremity problems can be eliminated with proper management, and the sooner the symptoms are addressed, the less risk you face of permanent decrease of upper extremity function. If your doctor does not suggest treatment such as physical therapy and occupational therapy, INSIST ON IT. “Normal” people rarely hesitate to seek medical assistance when pain or weakness occurs in their arms and shoulders. Neither should you, who has much more to lose — your independence.

Letter from Sylvia Dymond, Member in Hampshire.

In august 97 I purchased my second bed which raised me to a sitting position and raised at the foot end to easy my legs. It also had a built in massage unit to ease he pain and other other aches due to PPS. I heard that the company were then manufacturing a bed which lowered more – another 6 inches – to enable those who had difficulty getting their legs onto the bed, I omitted to say my first bed from this company raised me to a standing position, my new one does the same. When I expressed my delight over my new bed a spokesman for the company said ‘we listen to our customers and try to do our best to help.’ I could not live alone without my bed . The company is Bakare Beds, Tel 01752 51222 I have just taken my bed away with me when I went for a fortnights holiday/respite care and cannot cope without it.

Sleep Difficulties by Member Philip Dalton.

I suffer from sleep apnoea and so use a continuous positive airways pressure machine and face-mask, to keep my airways open during sleep.

However, I still had disturbed sleep; frequently waking fully of partially, and recollecting long dream sequences. These disturbances seemed

to coincide with times when I was changing position or trying to. I wondered whether my weakened body was unable to change position during deep – and therefore relaxed – sleep.

I tried the following which enabled me to sleep throughout the night – albeit still with the C-PAP machine. Firstly I removed the thick foam pad I had used on top of my mattress, this seemed to help perhaps because there is less resistance to movement.

Secondly I bought a ‘Bed Cradle’. These you will have seen in hospital used to support bed linen over a broken limb etc. It is a plastic coated steel tube, shaped to fit under the mattress and over part of the bed thereby lifting the covers from the body, legs or feet. This cradle serves a dual purpose – not only does it make it easier for me to turn, it also means that my muscles to not have to support my bed linen throughout the night. (I suggest that any such muscular effort expended during sleep is unnecessarily tiring.)

There are a large number of types of cradle available. Mine was from Smith & Nephew, PO Box 5665, Kirkby in Ashfield, Notts, NG17 7QX. Tel No. 0345 023087. They will send an excellent catalogue. The type I ordered was ‘Adjustable Bed Cradle’ Cat. No. AA3652, Price £28.84. They delivered the following day.

Some words of caution. The above has worked for me and I generally sleep more soundly but it is only my personal theory unsupported by any research or medical advice. Anyone suffering from PPS and disturbed sleep should get in touch with a Sleep Clinic (with PPS knowledge) through their G.P.

Philip Dalton

Correction. Last newsletters article on page 3 Summary of Anesthesia Issue for Post-Polio Patients – Updated 13th June 2000 by Selma Harrison Calmes. I mentioned this article in my story but did not specifically state that Dr. Calmes presented at the GINI Conference and apologise for this error.

Nutritional Therapist

Vivien Holland DNN writes… about Constipation

I am a new member and over the coming months I’m planning to write articles that I hope readers will find helpful regarding health matters, diet etc. obviously we are all so different in needs so I hope you will pick and choose as to what might help you. Do check with your GP it you have any doubts.

Just to let you know a bit about myself, I had polio in 1948 at the age of three. My legs were originally affected but they seemed to recover reasonably well and the only obvious effect was the upper left side, including shoulder arm etc. As a result I managed to lead a fairly normal life. Fully clothed, only very observant people notice anything not quite right.

My biggest problem was always fatigue and general weakness and in my 20’s I became very interested in nutrition, trying one supplement after another in an attempt to increase my energy. I think if someone had pointed out to me then that the polio had left its mark In this respect, I wouldn’t have berated myself that I couldn’t do what others took for granted. I’d have paced myself and not expected so much. Looking back, I realise that, for me personally, anxiety over my fatigue was draining what little energy I had.

When I was 38, enforced rest came upon me when I strained my low back badly, I expected it to get better but it didn’t, and seventeen years on the combination of that plus PPS has restricted me considerably.

On the bright side, if I hadn’t hurt my back I’d probably still be in my old job, banging away at a typewriter every day. Instead I began to study nutrition seriously, something I’ve enjoyed immensely, and I’d like to share with you suggestions that have helped me. I soon realised that our optimum health is not about taking the right supplements, although they can help. There is a lot of groundwork to be done to help our bodies function the best they can.

This first article is chiefly about constipation, something that affects so many regardless of whether they’ve had polio, but for anyone inactive it can be more of a problem. Anyone interested in health matters will have heard of the importance of detoxification. Our bodies are producing waste products all the time, and if our routes of elimination (bowels, kidneys

etc.) aren’t working well, it can contribute

greatly to fatigue and even aches and pains.

Drinking sufficient water is a must. Eight halfpint glasses a day in not too much. A pint of warm water on rising, half an hour before breakfast is very cleansing and will encourage a bowel movement. A little lemon juice added will stimulate the liver. Then. during the day, more water half an hour before a meal will improve digestion. It’s best to drink only small quantities of liquid with a meal. Large amounts will dilute digestive juices and hinder the digestion of the meal.

Having a bowel movement each day will promote a feeling of well being. There’s nothing worse than feeling you need to go but can’t. One of the jobs of the colon in to extract moisture from the faeces. This is why the longer a bowel movement sits in the back passage, the drier and harder it becomes. Drinking sufficient water during the day will help, as will a diet high in fibre or roughage. A problem I have encountered though in not ‘ really constipation but a lack of the urge to go possibly because the muscles In the back passage are sluggish. Something you might like to try are glycerine suppositories (from the chemist). Pushed up the back passage they melt and lubricate the area. I find they also have a stimulating effect on the muscles so that the b ~ 1 movement comes more easily and feels more complete. Try them when you are at home and can reach the bathroom easily.

I’ve also found that aloe vera juice benefits many people considerably. It has many health benefits, particularly helping bowel problems such as IBS (Irritable bowel syndrome) and constipation.

Clearing up a basic problem like constipation may not directly help polio fatigue but I find that so many things can contribute to our fatigue and make us more tired than we need be. We just want to feel as well as possible, don’t we. If you’d like to write to me with your own tips or comments. I’d be pleased to hear from you.

Write to: Vivien Holland 32 Green Lane St. Albans Herts AL3 6EZ

PPS and Nutrition

Report on talk given by USA Nutritionist and Life Member Jann Hartman at our AGM

Dr. Bruno does not recommend a “high protein diet” but a dietary plan that includes plenty of protein, especially at breakfast. (See LincPIN Vol 2, Issue 7, The Post-Polio Institute “Protein Power” Diet back page). It seems many of us have been skipping breakfast, and that is not good; and many times when we do eat, it is less than adequate for our PPS bodies, as we all need more nourishment to “break the fast” after sleeping. He has been saying that we need to get at least 16 grams of protein at breakfast to get a good start on our protein needs for the day. But, along with animal protein there is often a type of unhealthy fat (whole milk, sausage, even hash brown potatoes, and other fried breakfast foods) so you need to choose well. Bacon is practically all fat, and should be used very, very sparingly, if at all. You can also use the imitation bacon bits (made from naturally low fat soy) in things like sauces, omelets, quiches, etc instead of real bacon. To cut back on fat but keep high quality protein, you can use the “egg substitutes” or egg whites (the fat is in the yolk). If you have a problem with cholesterol the elimination of the egg yolks is the most important. But, otherwise you can certainly have a couple of egg yolks a week, and as many whites as you want!

High protein diets are unsafe for most people because the amount of protein is usually so high that it can be hard on your kidneys. A normal diet consists of 50% to 60% carbohydrates (whole grains, and other complex carbohydrates with much less sugar and other simple carbs). But, when you increase protein and fats to try to replace the carbs, you are not taking in the complex carbs your body needs to function. Fats have been shown in many reputable studies to contribute to cardiovascular problems. Some people do lose weight by mistreating their bodies with these “all you want to eat protein/fat diets,” but I also hear many stories of people who end up in the hospital from these poorly constructed diets, too. Not something *I* care to risk.

Keep to a sensible diet of complex carbohydrates, proper fats, and enough good quality protein (both plant and animal). Lean meats are best for those who need to increase iron, for others, plant protein is often a good substitute for at least some of the animal protein.

Soybeans (granules, tofu, etc.) are the only complete protein in the plants, but other beans, legumes, and vegetables offer various amounts of protein, too. It is best to try to get all the nutrients you need by eating as large a variety of

foods as possible, and not to eliminate any one food or food group. The less you eat the harder it is to get all you need from your food, and then a supplement may be needed.

I would suggest to all who are able to take a college level class on Nutrition, especially as it applies to eating well. If you are over 55, many of the college classes (at community colleges and others) are free or at reduced rates. Call around to find out. It is very helpful to know all the facts as there is much nutritional misinformation out there.

Beans are very good for you and you can even make Bean Fudge and Bean Pecan Pie!

Jann Hartman JKH <jann@home.com> <http://www.geocities.com/arojann.geo>

Jann and John are now continuing their holiday travelling through Europe. They flew from Baltimore, Maryland in the States to the UK via Iceland. They arrived at Heathrow and travelled by train to Lincoln and spent three days with us. We visited some of Lincoln’s sites on the Sunday and took them to Newark Station on Monday. From Newark they travelled overnight by train to Paris and then again overnight to Rome. From there they visit their son in Sicily. John is a radio ham and has his equipment with him and will be attending a ‘meet’ whilst there. They then travel back through Switzerland, Germany, Scandinavia and back to Brussels and the UK for a few days and then fly home on October 24th.

Jann is travelling with a very small scooter that easily comes to pieces and can be lifted by John. Other than this Jann uses crutches but only for short distances. The scooter is a flat base with a pole up the front with handlebars and another at the back for the bucket type seat. Underneath this is a standard size car battery that John has adapted to go on and off quickly. John straps one bag to the back of the chair – the one that contains his radio ham equipment! Another small bag goes behind Jann’s legs. John has a rucksack on his back and pulls a large suitcase. They have developed many ideas that others could find useful and on their return will be writing them up for us.

Jann will send us the recipes for Bean Fudge and Bean Pecan Pie (I am sure you like me have a queried expression on your face) for the next newsletter on her return. The proof will be in the eating! More from Jann next newsletter.

Reprinted from FORWARD MOTION, Polio-Post Polio Resource News of Central Florida, April 2000

DRUGS TO WATCH OUT FOR

WITH POST POLIO

1. Beta Blockers – e.g. Inderal, Propandolol,

etc.

2. Benzodiazapams – e.g. Valium, Diazapam

3. Opiates (central nervous system

depressants) -e.g. Darvon, Demerol,

Morphine, Tylenol 3

4. Steroids – e.g., Prednisone, Cortisone, etc.

5. Muscle Relaxants – e.g., Norgesic, Norflex,

(includes also Benzodiazapams – Valium)

We live in a time when most patients want an instant fix for their ailments, an antibiotic for an illness or a pill or shot for pain. Our doctors are conditioned to respond to these expectations. As we age it is not unusual for patients to go to a different doctor for each problem. This can be especially dangerous as one doctor may be unaware of what other doctors have prescribed or the interactions and contra indications for other conditions. One doctor simply can’t be current on everything. Insurance companies and HMO’s rely on the primary care physician to keep everything straight, but that doctor may not be as well trained as the other doctors or specialists.

This leaves us with a potentially serious problem. We, as patients, may innocently take a medication that may cause further problems or even give us a new ailment completely. As we age we can’t remember everything and many doctors do not care or have the time to listen carefully to what we have to tell them.

Dr. Paul D. Stolley, M.D. (Professor of Medicine, University of Pennsylvania School of Medicine) wrote the preface for the book “Worst Pills Best Pills”. In it he states, “For older Americans, nothing less than the closest attention to their health problems is adequate. Although many older adults can benefit from drugs which lower blood pressure, reduce the pain, and discomfort of angina or arthritis, or treat other common ailments, they are extraordinarily sensitive to adverse effects of medicines, such as drug induced Parkinsonism, confusion, decreased co-ordination, falls and hip

fractures, and mental deterioration. Thus the best medicine may be no medicine.

But if a drug is needed, the choice could be made by the active and informed participation with a sympathetic and unhurried physician. Furthermore, the continual monitoring of the patient is necessary after drug treatment is initiated: is the desired therapeutic effect occurring? Are there adverse effects? When should the drug be stopped? Is there the possibility of an undesirable drug interaction because of the other drugs the patient is taking?” (Ed. Note. I recommend you read this book and refer to it or one like it when new prescriptions come your way.)

Many doctors do not realize that post polio carries with it drug inter-actions and consequences that the normal population does not have to deal with and, therefore, not many doctors are familiar with them. They may linger in affect long after their stated duration.

1. Beta Blockers — A class of drugs used to

treat high blood pressure, angina, irregular heart

rhythms, and migraine headaches. A beta

blocker works by blocking the beta nerve cells.

In a simplified way let’s just say that beta cells

make the muscles contract. It is not for use in

any way where breathing is compromised by

asthma, allergies, emphysema, or chronic lung

problems such as post polio. Breathing

problems aside. Post polios by definition have

their nerve pathways damaged by the polio.

Anything that interferes with the function of the

remaining nerves is not a good thing. (Ed. Note

– I was once given a beta blocker and luckily I

was sitting up when it took affect. I was unable

to move and had great breathing distress until it

was out of my system. I was home alone I could

not even call for help.) These include, Inderal,

Corgard, Inderide, Lopressor, Tenormin, etc.

2. Benzodiazapams — A class of Addictivedrugs used to treat nervousness and sleeping

problems, to relax muscles and to treat seizures.

Their adverse reactions include confusion,

mental depression, drowsiness, hallucinations

and difficulty co-ordinating muscle use resulting

in increased incidence of falls, etc. Due to the

problems with the reticulating activating system

resulting from the polio infection this type of

sedative is not a good idea even if you have

sleep problems.

We have enough problems with co-ordinating the muscles that are functioning.

We should not be taking something that

interferes with what co-ordination we have left. These include, Valium and Diazepam.

3. Opiates — A highly addictive central

nervous system depressants and pain killer.

Medical texts state that and opiates such as

codeine works best with a non-steroidal antiinflammatory such as aspirin. All members of

this class of drugs depress breathing, the

ability to cough, and the function of the

intestines and bladder. In the case of Darvon,

studies have shown that it’s level of

effectiveness is close to that of aspirin alone.

All members of this class cause ataxia or loss

of the ability to coordinate muscle use. It has

been found that when the drug is given locally

with a pump inserted into the spine that it acts

with less central side affects. These include

codeine, Darvon, Demerol, Morphine, and

Tylenol 3.

4. Steroids — This class of drugs is used for

allergic reactions and to reduce inflammation.

The use of steroids has been shown to make

polio symptoms worse. It also suppresses the

immune functions, increases osteoporosis, and

raises blood pressure. It is commonly used to

treat asthma. Make sure you do not have the

post polio lung changes that are often

misdiagnosed as asthma and/or sleep apnea.

These include – Prednisone, Cortisone, etc.

5. Muscle Relaxants — This class of drugs

works within the brain and nervous system to

block the ability of the nerves to function

therefore causing release of muscle spasm and

pain. Again, our nerves are not functioning at

100% to begin with anything that works to

interfere with function must be avoided if

possible. These include Norgesic, Norflex,

Soma and, in addition, includes the class of

Benzodiazapams.

I have made this information as condensed as I can. I know you have much better things to do than read a long dry technical text. It is intended to help you and your doctor make a more informed choice of treatment. If you have any questions, please feel free to get in touch with me.

Bibliography

1. “The Merck Manual” 14th Edition, Merck & Co., Inc.

2. “Worst Pills Best Pills” 1988 Ed/ Author

Sidney M. Wolfe, M.D., Lisa Fugate, Elizabeth

P. Hulstrand, Laurie E. Kamimoto and the

Public Citizen Health Research Group

3. “Physicians Desk Reference” 1998 Ed. Medical Economics Co.

Editor’s Note:- This article was written by J. Ann Singleton, Information Officer of the Orlando Post-Polio Group. She can be reached at 407-260-9238, FAX 407-260-6837, or at her e-mail:- <jsinglehsd2@earthlink.net>

LincPIN Editors note – We are all different. We have had polio, have PPS and can have any other condition as well as PPS. Drug names across countries are not the same. This article has been included as an additional article to the drugs leaflet we issue for your information. It is imperative that any health professional that prescribes you any drugs or anaesthetic is aware that you are a polio survivor and that you may tolerate what he gives you differently from what he expects. Weaker polio muscles that do not look atrophied or test as weak on single manual muscle testing have a larger uptake of drug than expected.

An example this week is a GP prescribing a member Amitryptaline at 100mg and it zonked her out. We have another member who slept all day on 2.5mg. I take 5mg and am asleep within ten minutes.

Another member had a Gynae operation eight years ago with difficulty coming round, longer time recovering in hospital, and longer recovery at home than expected. This past year the same operation and ‘just enough anaesthetic to keep you under’ (anaesthetists words) meant she was awake drinking tea mid afternoon.

The best advice is to work with the person prescribing the drug/anaesthetic. Discuss this with your GP/Consultant ahead of time so that this is in your records. If possible and if there is time start at a very low dose.

Please contact us if you have any queries on this.

N.B. Some articles included in our Newsletter contain technical information that we know

some members do not fully understand. However, Health Professionals treating you will more readily accept information in this format.

– o –

Polio Biology XI – The Biology of Fatigue Eddie Bollenbach

A Lincolnshire Post-Polio Library Publication

6th August 2000

William Shakespeare, Sonnet XXVII: ‘Weary with toil, I haste me to my bed.’

Everyone has experienced fatigue, even Shakespeare. It is a reaction the body has evolved to maintain a healthy steady-state. It is a countermeasure to overuse and acts to avoid damage to muscles and nerves. If our bodies, sculpted through millions of years of evolution, had no way to tell us that it is time to shut down, we wouldn’t have gotten this far. So my first point in this essay is to emphasize that fatigue is not just the province of people living with post-polio syndrome. Everyone in the human family has experienced fatigue.

One area of the biomedical literature which has examined fatigue, and its components, is the discipline of sports medicine. The 2000 Sydney Olympics is on the docket and you can be sure that trainers and sport’s physicians are studying every aspect of fatigue that can effect their athletes. Why? Fatigue degrades performance. An understanding of all of its manifestations allows athletes to take steps to avoid and minimize the likelihood of a poor performance.

Of course we with post-polio syndrome live with fatigue. It is a much more common state for us and does not abate easily and normally as it does for an athlete. We have to be especially careful about it and also knowledgeable about it if we are to improve our lives.

Elite athletes know about fatigue to win medals, we must know about fatigue to improve our lives. Who knows more about the biology of fatigue, the elite athlete or the post-polio survivor? I hope this essay can help improve our general knowledge, from the biological perspective, and allow us to intelligently use this information to improve our lives.

Biology of Fatigue.

Throughout this series we have mentioned the motor unit. This is the nerve/voluntary muscle unit of contraction. The nerve depolarizes (that means the charge on the outside of the cell membrane (+) rushes

inside (-) resulting in the charge on either side cancelling). This depolarization moves along the nerve away from the Central Nervous System eventually to a voluntary muscle. When an activity requiring muscle contraction begins (running is a good example) the rate of depolarization and repolarization (which requires energy) is rapid in the motor unit. The nerve cell depolarization triggers depolarization in the muscle cell membrane. The muscle cell depolarizes and the muscle fiber contracts (shortens) due to the activity of proteins inside the muscle fiber. The muscle and nerve quickly recover and re-polarize. This uses nutrient energy. Then they fire again. If this rapid firing is not interrupted, either by other motor units taking over (which we lack- see Polio Biology X), or because of maximum intensity exercise over a long period, the nerve, nerve/muscle junction, and/or the muscle fiber itself will fatigue.

Inside the nerve the energy used to re-polarize the membrane is derived from specialized molecules, nutrients, and enzymes. As they become depleted waste products accumulate. If the waste products interfere with normal energy production and utilization we have metabolic fatigue inside the cell. The same can happen in the muscle fiber where chemicals like lactic acid, ammonia, and creatine build up faster than they can be excreted. All of this biochemistry, which may manifest as a feeling of burning inside a muscle, cramping, weakness, pain, or creepy crawly feelings are the result of fatigue, specifically localized fatigue. Any fatigue in the nerve, muscle fiber, or entire motor unit (muscle and nerve) constitutes localized fatigue.

If fatigue occurs in any nerves above the motor unit it is called Central Fatigue. It too is a common protective mechanism for the muscles and nerves below it and athletes experience it mostly as a consequence of over training. I get the sense that many polio survivors think that Central Fatigue is reserved for them and is a unique and disturbing symptom not known to others. This is not so.

There is a way to measure the magnitude of subtypes of Central fatigue. If you use a small electric shock to stimulate a muscle and measure the maximum force of contraction you can use this as a baseline of strength of contraction. If you then prompt a person to contract the same muscle as vigorously as possible you can measure the difference between tetanic contraction (of the unit with the electric pulse) and the maximum voluntary force possible. This is one measure of one subtype of Central Fatigue. We don’t know a lot about Central Fatigue at the molecular level but it manifests itself, often, as a loss of drive or motivation to perform. Again, one can appreciate the role of Central Fatigue in protecting the nerves and muscles by inhibiting their over work at the level of the Central Nervous System.

There is a part of the human brain you may have heard about: The Reticular Formation. Nerve cell firing there keeps us awake. Some say, or have said, that polio damage has affected the reticular formation and that this is why some of us sleep so much and cannot easily rouse. I think this would be a very difficult idea to prove because of the complexity of the arousal system and the role of Central Fatigue in overwork, blood gases, and other factors. If you experience a blow to the head the neurons of the Reticular Formation can all depolarize and you will be rendered unconscious. If re-polarization occurs (hopefully in a short while) you will awaken. Anyway, this depolarization and re-polarization is how all neurons work.

Let’s get back to Central Fatigue. Any negative effect on muscular performance, which is generated above the motor unit, is Central Fatigue. This includes inhibitory processes arising in the brain. We know less about this but we do know that it occurs in athletes as well as in polio survivors. The Central Nervous System is involved to a large extent in the regulation of muscular activity. (Bompa 1990)[1]. Elements within the Central Nervous System result in a number of psychological factors, and emotions, which can degrade muscle performance and result in a loss of drive due to Central Fatigue. (McComas 1996)[3].

During prolonged exercise in an athlete, or during any activity which exceeds the fatigue point for a polio survivor, the blood chemistry changes. Amino acids, which make up proteins, change with respect to their relative abundances. Those amino acids with branched chains decrease and fatty acids increase. Examples of branched chain amino acids are leucine, isoleucine, and valine. Tryptophan is an amino acid but is not a branched chain amino acid. The ratio or Tryptophan/BCAA rises during fatigue, which results in a biochemical alteration of tryptophan to 5- hydroxytryptamine (5-HT) in the brain. You may know (5-HT) by its more commonly used name of serotonin.

To make a very complicated story short serotonin can act on serotonin receptors in the brain to cause sleep and also increase the mental effort (motivation) needed to maintain muscular activity. It’s all rather complicated chemically, and this is but one theoretical biochemical pathway of many that helps explain Central Fatigue.

We’ve also heard of dysfunction of the hypothalamus and pituitary to explain Central Fatigue in post-polio syndrome. As is to be expected, these areas are implicated in Central Fatigue for elite athletes too. Possible indicators of Central Fatigue, cited by Lehman et.al. (1993)[2] include an impaired

neurotransmitter metabolism, with increased cerebral 5-hydroxyrtyptamine (5-HT) concentration, partial hypothalamic and pituitary dysfunction, with resultant dysfunction of the neuro-endocrine axes.

It has been observed that over-training in athletes (which happens often for our normal activities) results in faulty prolactin metabolism as well as adrenocortical insufficiency. Well, enough of the biochemistry.

Suffice it to say that fatigue is a complicated phenomenon which involves motor units and the CNS and regulates the body by preventing overuse on many levels. There is not much difference in the CNS aspects of fatigue comparing elite athletes and polio survivors in my opinion. We just must do more with less and get to fatigue sooner.

I’ve never heard of anyone trying Branched Chain Amino Acids to help with Central Fatigue but I believe they are available at health food stores. To do any good (and they may not) you probably need 10 to 20 grams. Ask a physician before you try this. The fatigue is there for a purpose. If you reduce it without addressing the root of it you could hurt yourself.

References.

1. Bompa TO (1990): Theory and methodology of training: The key to athletic performance. (2nd ed.) Dubuque: Kendall/Hunt Publishing Company.

2. Lehmann, M., C. Foster, and J. Keul. Overtraining in Endurance Athletes: A Brief Review. Medicine and Science in Sports and Exercise. 25 (7):854-862, 1993.

3. McComas AJ, Stuart DG, Thomas CK and Pierce PA (Eds) (1996): Fatigue: Neural and muscular mechanisms. New York: Plenum Press, pp. 457-469.

Linda Wheeler Donahue Polio Survivor and

Professor Emeritus of Humanities writes Don’t overdo Physical Activity.

For those who have had polio, the mantra is: “Conserve to Preserve.” The more motor neurons you preserve, the more capacity you will have in the future. Each day, focus on pacing activity with rest breaks, recline and restore. Take frequent rest periods during the day with your feet elevated as high as possible. Don’t overdo physical activity.

There is no cure for Post-Polio Syndrome. . . no magic bullet to restore our vitality. The only measure available to slow down the progress of PPS, albeit undramatic, drudging, and boring, is ‘conserve to preserve.’

More from Linda Donahue next newsletter.

Illusions by Judy Sander

How many of you ignore that you have a disability? Be honest. We ignore our disabilities because the word “disabled” was and is a stigma to be avoided at all cost. It was especially a stigma when we were recovering from polio. We were taught during and after polio that the only reason we might not conquer the aftermath of this horrid disease would be that we were weak, lazy, and did not try hard enough. So, many of us have created illusions that we are not disabled or we may accept only a portion of our disabilities within our illusion. We pretend that if we wear certain clothing, stay home, smile in spite of our pain or lack of breath, no one will notice. By doing this, we are not only hurting ourselves but also those who care for us.

Of course, there are different degrees of disabilities but alas, many of us try to ignore those that we should not. Have you created an illusion concerning your disability? This may be the time in your life to face reality, the complete reality of your abilities and disabilities.

I had polio when I was six. I was paralyzed and very ill for eighteen months and at the age of seven, I weighed a mere twenty-seven pounds. After six surgeries, years of therapy and more, I had conquered polio. At least the illusion was that I had conquered polio.

I am not sure when the illusion, that I was not disabled began. Possibly, it began during the illness itself. Or during therapy? Could it possibly have been that my family considered it an illusion and the thought penetrated my very being. Or is it because I was taught by therapists, doctors, nurses, Mom, Dad, and other relatives, through out my illness and recovery, that I could not show weakness, refuse a task, and to never ever give up? If I did, it would prove that I lacked initiative. However, if I tried my very best, never complained, believed I could do anything, everyone would love me and accept me.

After the age of 13, I pushed into things I never had done before. I played softball. I ran. (Well, I thought it was running.) I even became a band majorette, limping as I marched and dropping the baton every so often. I somehow had convinced the band director that I could twirl the baton and march.

At the Cheyenne Frontier Days parade, my illusion was broken when a large bone dropped through the muscles in my right foot. A cast for six weeks seemed to correct this problem but my

majorette dream, became a bad memory.

In my late teens and early twenties, it was wonderful to wear high heels. No more brown built up shoes for me. In fact, never would I wear a brown shoe again. Short skirts with shaded hose, added to my wonderful illusion of perfect legs and a perfect gait plus no one would see the scars.

Three pregnancies with four children certainly underlined my illusion of not being disabled. Or did it? Home movies show me limping. Home movies of my children’s birthday parties show that although I am smiling, I recall the pain and fatigue. A movie of mountain camping with four children only brings memories of the pain. The pain of carrying twin babies while pulling a sixyear-old away from a riverbank is unforgettable. Pain pills were a main stay. Falls were a common occurrence. Even my children, limped when they walked besides me, bobbing together. Cortisone shots to the hip joint were a monthly event. Almost all of my memories of these good old days include the pain of overused, weak limbs.

In my 40’s, my illusion began to fade. A cane became necessary for walking any distance. Then a fall at a sports event fractured several vertebrae because I wanted to look stylish, impress my husband with high-heeled boots and of course, the cane was in the car. No one would ever think that I had a problem, that I was disabled. Of course, they saw me limp and they saw me fall. They knew. I had the blinders on.

Still in my 40’s, it was common that when my mother visited and we went shopping, she found me a place to sit down and rest at each store. Fairs, antique shows, walks on the beach, sport events and more, became impossible. My husband and my family did less together as time went by.

When I travelled to Europe in 1989, the 70 and 80-year-old fellow travellers went where I could not. They climbed the steps at St. Michael’s in France; they walked the length of every cathedral. I stayed behind. Sometimes with a man in a wheelchair, but often he could go where I could not.

Two years ago I helped start our local Post Polio Support group. This was a big step in accepting my limitations. After watching, listening, and talking with many of our group members I slowly began to let go of my elusive illusion. I watched how many walked with more grace and smoothness than I did, yet they were

wearing braces on both legs. Even those with crutches and braces moved quicker and were more stable than I. I noticed that those in scooters and wheelchairs were not limping, grasping for falling canes, or grimacing from pain. A light bulb began to glow in my mind. Perhaps, just maybe, I am disabled. Perhaps my doctors are correct, maybe I do need a brace and just maybe, a portable wheelchair in the trunk of my car.

Right before Thanksgiving in 1999, I was fitted for an AFO for my right leg. Of course, the prescription said to go for a full leg brace, but the illusion, although becoming dim, is still there. “No, I will get by with the AFO”, I told my Orthotist.

What a wonderful Thanksgiving and Christmas holiday. What wonder to have one leg stable. The fatigue was less at the end of the day. The pain in that leg was less. I was even able to process down the church aisle for the choir concert in December, the first time in years. My husband, who was in the audience, could not find me as we processed. Why? He was looking for the blonde-haired woman that limped.

Why did I not get a brace when a concerned Doctor recommended it, in my 40’s? If I had needed glasses, I would have not hesitated. Of course we know the answer; the illusion was stronger than the reality.

I am still working to face the complete reality of my disability. No, not to make it more or less, just to accept it for what it is. We must face the reality that we are only fooling ourselves with our illusions. By obtaining proper bracing, a scooter or whatever it takes, will not only improve our lives but will lessen our chances of creating even a worse disability. Consider a fractured hip, arm, or pelvic. We must have the courage to accept reality and to ignore the illusions we have created about our disabilities.

I hope that as you read this you will stop, look, and examine your abilities and your disabilities. Look at yourself objectively. You very well could walk straighter, limp less, have less fatigue and pain, by stepping forward in obtaining braces or (horrors) by using a wheelchair or scooter. You could possibly do more things and embrace life with increased vigour. Your family and friends will enjoy you more. You will enjoy them more. Relax, smile, face reality and throw your particular illusion out the door. Life is waiting for you.

Judy Sander, 3/2000

Network Spinal Analysis

Hilary and I were asked by Vic and Joan to visit with them and experience some treatment that they had been having in Australia and were now having here in the UK. Hilary had not seen Vic for nearly a year and could see a definite improvement in his walking. We enjoyed the treatment. It was relaxing, soothing, gave you a sense of wellbeing and following the first two treatments the pain left my shoulders and arms. Unfortunately for the third treatment and to use the toilet I had to negotiate three flights of stairs where I had to pull myself up with my right arm and some pain returned. The pain is now bad in my shoulders and arms but I think that is because I am now having problems steering my scooter. Hilary said she felt ‘taller’ her spine straighter and generally her joints less stiff. This was only a short session but if a therapist was nearby and money available then we both felt that we would try a longer series of treatments. As with many alternative therapies, the time being spent on you personally really can make a difference.

Richard L Boone. <I2smith@aol.com>

Raffaello Sciffo, D.C. explains NSA.

Several months ago I was approached by Mr Victor Oliver, who mentioned that he had had Network Spinal Analysis (NSA) care in Australia, with relatively good results. We decided to embark on an intensive course of visits and achieved once again, good changes in his health and overall wellbeing.

Most significant of these were that he no longer needed to use a cane, he could walk longer distance without tiring and muscle mass from his thigh and buttock area that had atrophied, had come back considerably.

Due to these great results and Mr Oliver and his partners enthusiasm, we decided to try a short experiment with two other Polio people. You notice I use the word ‘People’ not victims, patients or sufferers. The reason for this is that the terms all signify a separation. A victim and a patient are all acted on by an outside (or internal) force, which is separate from your Self. This is an important concept to keep in mind.

Due to the positive results those two people experienced I was asked to write a brief

explanation of what it is that I do.

Normally what NSA tries to do is make your body more consciously aware of the tensions it is holding. Once these tensions are let go of, the nervous system is freed up to work on other tasks. The freer the nervous system is to focus on other tasks, the more efficient it is, and the less intense are the symptoms it is manifesting due to ‘exhaustion’.

What is Network Spinal Analysis?:

Network Spinal Analysis (NSA) is a Chiropractic method that was developed by a Chiropractor Dr. Donald Epstein in America, initially in the early eighties.

It is so different from traditional Chiropractic that it has recently been officially separated from it, although only Chiropractors so far, are able to achieve training and certification in it.

What does NSA actually do?

It focuses on making your nervous system work more efficiently. What people find most amazing is that the largest ever study of NSA with over 3,800 people over 3 years, showed that there was no plateau in their improvement!

This shows the body seems to have no limit in optimising its healing potential.

The study was not limited to physical symptoms. The six areas monitored in the study done by Sociologists at the University of California, Irvine were:

1) Physical Improvement

(symptoms) 2) Less Stress

64% 66%

ImprovedImproved

3) Emotional and Psychological

Well Being 4) Life Enjoyment

64% 69%

ImprovedImproved

5) Positive Lifestyle Changes

76%	Improved
6) Overall Quality of life improvement
59%	Improved

How, technically speaking, does NSA work

NSA is a gentle technique that involves, unlike most other health care methods, training the nervous system to function more effectively. It is based on the four tenets of Chiropractic that are:

a) That the nervous system is the master

controller and co-ordinates all the actions or the body from making new blood cells to producing insulin.

b) That the housing of this system (spine and

skull) is capable of being distorted which

can affect the nerve systems functioning.

c) That these distortions causing nerve

message irritation lead to inappropriate

messages being transmitted, and thus

wrong actions taken by the body.

d) Those consistent inappropriate body

responses can lead to ill health,

How NSA is so different from most other types of care, including even to some extent Chiropractic, are its concepts of healing.

Concept 1 Healing versus Curing:.

In Curing you are concerned with the symptoms and getting them under control. The goal is to get you back to where you were before you developed those symptoms, or what is considered normal or average for the population.

Healing on the other hand sees symptoms as a way the body is trying to communicate to you and let you know what it needs, or what you are not doing optimally e.g. the feeling you get after one too many drinks. Its goal is to teach you about yourself so that after the ‘crisis’ you function at a higher level, you become greater than what you were.

It must be noted that curing may be an essential part of the healing process.

Concept 2 Myths and misconceptions about Healing:

Many misconceptions are held by western society in regards to healing science that are ‘too advanced for the lay person to understand,’

Two examples include;

1) The more serious your illness, the longer the

recovery will take. Also, if the conditions is more

serious, the treatment needs to be more

expensive, more dangerous and more invasive.

E.g. Cancer versus the common cold.

The body does not work in a linear fashion, invasive methods may have little effect and a brief comment by someone may change your life (and thus health) forever.

2) The body works like a machine, with different bits having different life spans, so at a certain age, it is expected that a certain body part ‘wears out’.

The body works more along the principles of quantum physics than mechanics. It is constantly repairing itself.

Your body replaces

your stomach lining every 5 days and your skin every 4 weeks. Your body makes

a new liver every 6 weeks and a new skeleton every 12 weeks.

If this is the case, why is an injury from 10 years ago, still bothering you?

The basis of all the concepts of NSA is

SEPARATION.

As you are part of the population of a city or country, or perhaps a team or an assembly line, so are your cells part of you. A community of 75 trillion individuals working together, with a personality of its own.

If all members of a team are communicating well, not only do they work well, but (a) they will constantly improve on their efficiency; and (b) they will have FUN.

The moment communication starts to break down, small groups form and they take on their own identity. If you focus on them as the problem, persecute them, attack them, ignore them or otherwise focus on your differences and separation, you give them power and autonomy. This is the whole principle of medicine and in fact of much of our society, as we know it.

The other option is to focus on the similarities, and try to tighten up the bonds between the parties. To create more unity and wholeness.

Symptoms are the bodies way of letting us know all is not well, that communications have broken down and that attention to our lives is now more vital than ever.

Too many of us want to quieten the messenger that brings us this information, with painkillers,

anti-histamines, anti-depressants, antiinflammatories, and anti anything else we can come up with that we do not want to feel.

Others take to learning from the experience and listening to what it has to teach us regarding ourselves. They turn to yoga, meditation, Tai Chi and other more internally guided types of healing.

Neither is better or worse, only appropriate for

the individual. With NSA we do however focus on the latter. We want to get people more in touch with their essence, their true selves, and to maximise their experience of life.

The study shows just how effective we are in these areas with people spontaneously changing habits and lifestyles. Sixty nine percent had a greater life enjoyment. and a full seventy six percent did undertake some positive lifestyle changes.

But what are the real nuts and bolts of how it works?

The Chiropractor lightly touches the spine with a pressure ranging from that of a feather, to a decent prod, placing the brains awareness on that area. The brain then processes the information and if it finds the tension located there to be no longer vital to the body, it just lets it go.

Due to the nature of the work, in changing a bodies habit, the visits are frequent and short. Usually the Chiropractor will see the person three times a week for several weeks before cutting down to a less frequent schedule,

Why Group Adjusting?

We adjust people in a group room because it has been shown to reduce tension and enhance a family atmosphere in the practice. In NSA it has been shown to significantly enhance the healing process.

How much time does it take?:

Initial consultation takes 1 hour. Follow-up visit.-, generally take about 15 minutes, unless you are acute in an emergency situation.

So, that’s NSA in a nutshell. For further information or to look for a Chiropractor near

y o u , g o t o t h e w e b s i t e

www.networkchiropractic.co.uk or call 01865 377877.

Helpers Simply Helping Simply

by Art Coburn

My Nancy is vertically challenged, in today’s newsspeak, and today, as happens nearly every time she goes shopping, she had to ask another customer to please get her something that was on a shelf way too high for her to reach. This happens quite often but she’s had the problem all her life. Sound familiar?

What I’m getting at is simply this: At various

times in the lives of most people, disabled or no, we simply have to ask for help. And you can’t ask for much simpler help than, “Please, sir, would you get that can of beans for me? I can’t reach it. Thank you.”

Where do you and I, PPS-ers all, find this simple help?

May I be so bold as to suggest the local church? In the Christian New Testament, James wrote this in the 27th verse of the first chapter:

“Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” (James 1:27NIV)

The rational and logical understanding of this verse includes all who need help, not just the orphans and widows. Period. Does that include you and me? Definitely, my polio friend, definitely. Actually, the man who helped Nancy get the can of beans was simply putting this instruction into action, whether or no he was in the Church.

Many of us belong to a PPS Support Group, but there we find that most of our friends are in the same shape we are or they may be even worse off, so when we need a bit of physical help with some household chore that we simply cannot accomplish, our Support Group cannot provide much support, can it? But if your church around the corner is also a support group for you, then you will have another means to defeat that old polio dragon, won’t you?

So if we say that the local church is a support group to help us in our daily lives, then let’s define a Support Group as a tool, defining a tool as some thing we use to help us get along in life. Just as a carpenter cannot drive a nail without a hammer or cut a board without a saw, we cannot go to the mailbox without a wheelchair, callipers/braces, a cane or crutches, or an electric scooter. A tool is a tool is a tool, whether it is inanimate or animate. Now let’s use a syllogism to illustrate what I mean about using the Church as a tool:

A. A Support Group is a tool for you and me

to use.

B. A Church is a Support Group (at least for

its members).

C. Therefore, a Church should be a tool for

you and me to use.

We had a very large branch fall into our yard the

other day, but it didn’t do much damage. The branch was about 22 meters (75 feet) long and about 3/4 of a meter (about 30 inches) through at the end where it broke from the pecan tree. Obviously much too big a job for Nancy and me to take care of, so I called my friend and neighbor who lives about a mile away to come look it over. He’s also a deacon in our church who really lives up to his office. When he came over he said he’d show up the next morning and I figured I could help him then (mornings are best for me), but he and his grandson came after supper, so my granddaughter and I went out to help with the clean up, and a good time was had by all, really. It didn’t hurt that the grandson and the granddaughter were near the same age, either.

If my friend and neighbor had been unavailable – it is haying season for him, there are other men in the church I know that I could call. But on occasion I have called the church office and simply said, “I need a bit of help,” and got it.

The problem is, We Simply Hate To Call For Help! I know I do. If there is some possible way that I can get something done, then I’m just stubborn enough, and stupid enough, to go ahead and do it. Then, like you, I pay for it later. Dumb. Dumb. Dumb.

“When push comes to shove, your POV will change.” In the last few years, push has come to shove, and my point-of-view has changed markedly. The unfortunate thing is that my friends that I call for help are all getting older. My friend and neighbor who cleaned up the tree branch for me is 73, but can easily work me under the table anytime. So when I need younger help, I may simply have to call the church office and say to the secretary, “I need some help, please.” The help may not be instantaneous, but what help is in this life? Even when you pay for it!

Do we have a misplaced sense of loyalty? Or perhaps a sense of confusion as to what the mission of the church around the corner really is? Perhaps you are afraid that they will want you to “tithe,” or pray, or some other ritual that you may not be familiar with. So what? Be honest with them and explore your doubts that they can really help you. Or even that they really will help you. For free, too.

Obviously I am writing this from a Christian perspective, but to the best of my knowledge all religions usually have some sort of service policy for the poor at least. Our church has a walk-in closet full of canned and dry foods to give to those unfortunates who come to the church door

saying they have no food in the house, and it happens more often than we, the laity, know. By extension, as I said above, the local church’s consciousness regarding those who need a bit of physical help now and then, can be and should be raised, whatever the religion or denomination of the particular church, assembly, synod, synagogue or temple.

It isn’t just us PPS-ers, you know. Nancy and I live in Florida, USA, and this is a “retirement” state. Our church membership is heavy with those over 60, so our pastor and some of the deacons spend a lot of time in the city at each of the hospitals with the folks getting kidney transplants, heart transplants, x-rays, MRI’s, and on and on. A religious fellowship of whatever kind, to be worth its salt, must support its members whether in the birthing room, the funeral parlour or the ICU. It is a tool to be used by its fellowship. You and I, my polio friend, are under that same umbrella, and when you get there, under that umbrella that fits you, then you will find life to be just a bit less stressful, knowing and being comforted by the simple promise of help when you call. Do try and develop your friendship with your local church. I think you will be surprised and pleased, and I also believe that you may find a new usefulness in yourself within that fellowship.

You may email Art Coburn at: artinfla@afgn.org To view pictures of the Coburns go to http://www.photopoint.com

Then type in the above email address in the “Visit Album” box.

Articles added to the Lincolnshire Post-Polio Library

sourced on our WebSite since last newsletter

Reminder – All the medical articles printed or referenced in this section of the LincPIN’s are sourced in full in the Lincolnshire Post-Polio Library on our WebSite. For those of you without access to the Internet who would like copies of any article they are available from us for the price of photocopying. Members post free.

Title: Dr. Henry writes about the Virginia Polio

Epidemic of 1950

Author(s): Henry Holland MD

Original Publication: Central VA PPS Support Group (PPSG)’s newsletter, The Deja View, in August/ September 2000.

Abstract/Extract: I contracted polio on Sunday, September 17, 1950, entered the polio isolation ward on the ninth floor, south wing of the Medical College of Virginia Hospital on Saturday, September 23 and was discharged almost three months later on Monday, December 18. In addition to the isolation ward, I spent time on nine west during post isolation, and the majority of my hospitalization on five south and five west in convalescence and rehabilitation. The event of polio changed my life thereafter. Until recently, I had little interest in the polio events of that year. With help from the Virginia Health Department, Division of Immunization, and newspaper records from Richmond Newspapers, I have learned that 1950 was a record year for polio in Virginia and that Virginia ranked second in the nation in the incidence of polio per capita in 1950.

Title: Polio Biology XI – The Biology of Fatigue Author: Eddie Bollenbach B.A., M.A.

Abstract: Elite athletes know about fatigue to win medals, we must know about fatigue to improve our lives. Who knows more about the biology of fatigue, the elite athlete or the post-polio survivor? I hope this essay can help improve our general knowledge, from the biological perspective, and allow us to intelligently use this information to improve our lives. (Included in this newsletter – page 16)

Medical Articles continued from previous page

Title: Poliomyelitis and the Post-Polio Syndrome

Author(s): Burk Jubelt and Judy Drucker.

Original Publication: Chapter 34. Reprinted from Motor Disorders edited by David S. Younger. Lippincott Williams & Wilkins, Philadelphia © 1999 Abstract/Extract: In the first half of the this century, epidemics of poliomyelitis (polio) ravaged the world. In the epidemic of 1952, over 20,000 Americans developed paralytic polio. With the introduction of the Salk inactivated polio vaccine (IPV) in 1954 and the Sabin oral polio vaccine (OPV) in 1961, the number of paralytic cases decreased to a handful per year. Polio had vanished and no longer was on the

Members Email list – If you are on the Internet and would like to be subscribed to our Members Email Discussion List then please email us at linpolio@legend.co.uk FREE EMAIL UPDATING SERVICE OF ADDITIONS TO OUR WEBSITE Information on top of the Whats New Page.

Lincolnshire Post-Polio Network – Registered Charity 1064177

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year.

(All UK Memberships payable by Standing Order – Form on request)

Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make cheques payable to ‘Lincolnshire Post-Polio Network’

European Membership – LM £125 – Member £12.50 a year – Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail.

(US$ checks to Lincs P-P.N. c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA) Other Countries please contact for details.

All donations will be gratefully received

LincPIN Newsletter – December 2000

Articles for publication by November 20th – Publication date 5.12.2000

All enquiries, book requests, medical article requests, fees, items for newsletters, donations to

Lincs P-PN, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44(0)1522 888601 Fax +44(0)1522 885115 by request or +44(0)870 1600840 24 hours Founder & Chairperson – Hilary Hallam <linpolio@legend.co.uk>

Honorary Secretary – Wendy Grimmitt – <CWGrimmitt@aol.com>

Vice Chairman/WebSite Administration, Chris Salter – <linpolioweb@loncps.demon.co.uk> UK Treasurer, Frank Grimmitt – <CWGrimmitt@aol.com>

Committee Members – Phil Bilton, Janice Eary, Ted Hutchinson, Jennifer McGowan.

consciousness of Americans. The elimination of polio was a tremendous achievement for science and American medicine. However, in the late 1970s, survivors of paralytic polio began to notice new health problems that included fatigue, pain, and new weakness, thought not to be “real” by the medical

estab lish ment. The ter m “post-po lio

syndrome” (PPS) was coined by these patients to emphasize their new health problems. This chapter reviews acute poliomyelitis and the related PPS.

Offsite Article by Burk Jubelt & James Agre

Linking	Evidence	and	Experience:
Characteristics	a nd	M a na g ement	o f

Postpolio Syndrome

http://jama.ama-assn.org/issues/v284n4/full/ jct00011.html

Author(s): Burk Jubelt, MD; James C. Agre, MD. Published: JAMA Vol. 284 No. 4, July 26, 2000.

Introduction: Postpolio syndrome (PPS) refers to new, late manifestations occurring many years after acute poliomyelitis infection. Over the last 25 years, PPS has become a relatively common problem encountered by primary care physicians. A 1987 National Health Interview Survey estimated that about half of the 640,000 survivors of paralytic poliomyelitis in the United States had new late

manifestations of PPS. Subsequent studies in the 1990s have found the occurrence of PPS among patients with previous poliomyelitis to range from 28.5% to 64%. The average time in various reports from the acute poliomyelitis until the onset of PPS is about 35 years, with a range from 8 to 71 years. However, it is unclear if the occurrence of PPS increases with aging, which may be the case based on the most accepted etiologic hypothesis. The large number of PPS cases presently being seen is probably due to the poliomyelitis epidemics of the 1940s and 1950s.

Linc Pin Volume 3 Issue 1 Read More »