Newsletter – Page 9 – Polio Survivors Network

Linc Pin Volume 5 Issue 6

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 6 — October 2005

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

This publication is provided as a service to those seeking such information. The opinions expressed in this publication are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

Art Work by Chris Salter

CONTENTS.

Trustees Report and Accounts Enclosed.

2 Contents and Information

3 Editorial by Hilary Hallam

4 Message from the Chair

From Post-Polio Health International’s 9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well,

5 Scooters and Power Chairs—Jann and John Hartman, Baltimore, Maryland.

6 Spinal Bracing & New Technology in Lower Extremity Orthotics

Mark Taylor, MLS, CPO. Director of Clinical & Technical Services, Ann Arbor, MI 8 Service Dogs for People with Neuromuscular Conditions and those who use ventilators.

Joanne Kocourek, RN, DDRC, Worth IL.

10 Two Snippets from the Conference.

Snippet 1—Eating better for better health with your family and friends. Snippet 2—Planning ahead to stay in your home when getting older:

11 Hurricane Katrina,

What would you have done if you lived in this area and had to evacuate? 12 The Ten Commandments of PPS from Drs. Richard L Bruno and Nancy Frick 14 Hints Tips and Bits.

15 To Do or Not to Do (with apologies to William Shakespeare)

16 Polio and Post Polio News—Medical Article—Non-invasive assessment in respiratory

muscle strength in patients with previous poliomyelitis. St. Thomas Hospital, UK

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Post to Membership Sec, 78 Heron Road, Larkfield, Aylesford, Kent ME20 6JZ, UK UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £10 a year. All UK Memberships payable by Standing Order – Forms from Membership Secretary.

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – December 2005

Articles for publication 1st November by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Secretary– Hilary Hallam – hilary.hallam@lincolshirepostpolio.org.uk Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Member – Di Newman – di.newman@lincolshirepostpolio.org.uk Operations Team

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Phone Team – Di Brennand (Leader), Pat Hollingworth, Margaret Edmonds, Judy Barter Administrative Support – Sheila Dunnett, Barry & Olivia Branston

Internet Services Administration Chris Salter – netadmin@lincolnshirepostpolio.org.uk

This Newsletter is early to save us postage in sending out the Trustees Report and Accounts and the Newsletter in the same post.

I have another apology to make in that the date on the page for nominations was incorrect. It should have been the 15th September 2005. However, as with all AGM’s in the past nominations can be taken at any time prior to the voting on the day. So there is still time to post or email your forms.

We are always looking for members/family members to help with our workload. We do appreciate that living with PPS can mean a reduced amount of energy, time, finances, brain power etc. However, you need to be aware that nearly all the committee members/operations team over the last ten years have PPS and have given up time and energy to research and [I am going to be honest here, I cannot think of the word I need, demonstrate is not right, it begins with a d…. And means pass the information on to you. See page 14] After ten years I have to admit that I can’t do as much as I could ten years ago.

Last newsletter you saw a picture of the Southport gang. If you would like to meet up with members near to you over coffee then do get in touch and we will write to those locally to you to see who is willing to join in. By the time you read this I will have contacted those near to me in Lincoln for a coffee morning.

We are still looking for folks who regularly receive a copy of a Disability Magazine/ Newsletter to do us a short piece for the newsletter/or just send us the information on anything that might be of interest to members.

Members who are connected to the Internet and are not subscribed to our Members Email List and would like to do so, please email me so that we can set this up for you.

. AGM—Day of Speakers

Saturday October 22nd 2005.

10.00 to 4.30 p.m.

North Hykeham Day Centre, Neale Road,

North Hykeham, Lincoln, LN6 9UA. [Tel:- 01522 689534]

AGM commences 10.15 a.m.

Followed by Speaker at approximately 11.30 a.m.

Mr. Mark Rainey, Social Services, a Carer Services Co-ordinator

Lincolnshire County Council Social Services Directorate is developing a countywide service to provide information, advice and support to carers through a single point of access and a coordinated network of partner providers. Mark is asking for this to be a two way discussion. He will explain what the new service is all about and then would like to hear from members as to any problems that their carers have experienced. An ideal opportunity for us, especially our Carers, to learn more about the new Carers Assessment and bring forward problems that we have experienced.

Buffet Lunch approximately 12.30 p.m.

2.00 p.m. Speaker

Dr. Darren Barnes-Heath, BSc, D.C. C.C.E.P.

A Doctor of Chiropractic specialising in Neurological conditions in Lincoln.

Chiropractic specialises in mechanical disorders of joints, particularly those of the spine, and their effects on the nervous and muscular system. It is now State Registered and is the third largest primary healthcare profession in the world, after medicine and dentistry. Darren will explain how he assesses and treats Polio Survivors and looks forward to answering your questions.

Tea, Raffle, Questions, Chat till 4.30 p.m.

“Hello Readers,

It is only just over a month since we issued the last newsletter; so this edition comes out hot on the heels of the previous one with the Annual Report & Accounts for 2005. This newsletter has been reduced to 16 pages as we felt the Report should be a separate document. Team members have worked particularly hard this month to ensure that our Report is with you within the time required by our constitution. In response to our readers’ survey, we have raised the annual membership fee from £10 to £12.50 with effect from November. All equivalent currencies are explained in the Report.

It has been a busy month in other respects. 8 other members joined me in attending the BPF’s Greater Manchester Conference on PPS, and came back with a number of interesting impressions. Guido D’Isidoro and his team at Manchester worked hard to make it a very welcoming day, and they invited a number of interesting speakers. In particular I was pleased to have established a link with medical professionals in the North West of England. Consultant Neurologist Dr David Shakespeare, from the Preston Royal Hospital (Lancashire Teaching Hospitals NHS Trust) gave an informative talk about the Neuro-Rehabilitation clinic at Preston. It was refreshing to meet and listen to a health professional in the North West Region who is pro-actively involved with PPS patients. Dr Shakespeare gave us permission to recommend his name to polio survivors in the north west area (to request a referral through their GP, if they so wish). This helps us enormously to respond to enquiries which come in both via our website and via the telephone helpline. We seem to have filled our already reduced newsletter this month, so more on Dr Shakespeare’s Neuro-Rehabilitation Clinic in the next issue.

It only remains for me to thank a very hard-working team for all their efforts this year, in ensuring that you get your newsletter on a bi-monthly basis, and also safeguarding the activities and assets of the charity. Our AGM promises some interesting speakers – I have heard at least three positive accounts of the benefits of chiropractic for polio survivors this month alone. See the AGM notice for further details. We urge you to continue to support the important work of the charity this coming year. We welcome Mary McCreadie to the Operations Team. She will be introducing topics for discussion on our Members Email List and overseeing the responses to produce short reports for the benefit of all members. We encourage you to help us by sharing the tasks involved in increasing the information we can provide. As usual you will find our contact details on the inside front cover.

Best wishes Mary Kinane, Chair

Two good Consultants in Rehabilitation Dr. Prasad

Community Rehabilitation Centre, Long Leys Road, Lincoln, LN1 1EF

Dr. Ali Arshad,

Haywood Hospital, High Lane, Burslem, Stoke-on-Trent, ST6 7AG, UK

SCOOTERS AND POWER CHAIRS Jann and John Hartman, Baltimore, Maryland.

at Post-Polio Health International’s

9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005.

A gel cell battery is the most popular sealed lead-acid battery used with mobility equipment. It’s maintenance free. But, it must be cared for properly.

Lifespan of your battery depends on several factors:

1. how the battery is used.

2. how it is treated

3. how it is charged

4. temperature.

Battery capacity is reduced as the temperature goes down. At 32 degrees F/0 degrees C [freezing] capacity is reduced by 20%. Battery life is affected as the temperature increases. Most manufacturers agree that there is a 50% loss of battery life for every 15 degrees of temperature over 77 degrees F/25 degrees C. Batteries are designed to be used on a daily basis—inactivity can be harmful. Do not buy new batteries and save them to use later. It is best to buy them when you need them.

Recharge batteries right after using them. When a battery discharges (through use or just setting) sulphate forms on the plates. Recharging takes sulfates off the plates, so they can’t harden and shorten the life of the battery.

Batteries should be stored ideally between 32 degrees and 80 degrees F / 0 to 27 degrees C.

When you take your scooter or power chair in for its annual check-up, the batteries will be checked.

All batteries die eventually. For battery replacement, check your durable medical insurance or Medicare. If you need to buy new batteries, shop around for the best price, but consider things like service and freshness of stock. For example, a battery warehouse may have the best price, but they don’t provide service. Internet Resources:

Battery Care [Tutorials]: Mobility Equipment: How Batteries Work: Battery Safety [Fact Sheet]	www.batterystuff.com www.ibsa.com	(shop smart)
www.execulink.com/~impact/batteries.htm

Ohio State University Extension http://ohioline.osu.edu/aex-fact/0596_2.html

[Editors note—Do we have a UK member/family member who could do us a short piece on battery use in the UK that is not covered above?]

Spinal Bracing & New Technology in Lower Extremity Orthotics at Post-Polio Health International’s 9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005. by Mark Taylor, MLS, CPO. Director of Clinical & Technical Services University of Michigan Orthotics and Prosthetics Center 2850 S Industrial Highway, Suite 400 Ann Arbor, Michigan 48104-6796, U.S.A. Tel: [734] 973 2500 markt@umich.edu

Many of us are striving to maintain our ability to independently ambulate. We notice that it takes just a little more effort to get going, maintain our balance and participate in our home and community activities/obligations. Some of us have decided to obtain help from our physicians who in turn refer us to therapists, orthotists, and other health care areas. (Pain management, nutrition clinics). We go, we listen and then we have to make our own decisions on what type of care we are going to accept, participate in.

Our minds want to keep going, but our bodies are telling us that a little less strain would be good for the day. Our joints are aching, our feet are yelping and our backs aren’t as strong as they used to be and we find our knees buckling and once in a while we find ourselves on the ground trying to find a decent way to upright ourselves. Thus, we make the decision to obtain help and eventually end up in front of a clinic team trying to figure out why we are having these problems and what to do for them.

Well, we all know why, whether or not we want to believe it. We are wearing out, getting weaker, getting older and getting tired. The clinic team evaluates us and talks their shop language to come up with a solution. Many of the solutions include the new technology that is slowly coming into the orthotics world. What is this new technology? How can it be applied and will I be safe with it? These are the questions that need to be asked and the orthotics plans using the new technology need to be considered very, very carefully.

When applying the new technology, physicians and orthotists alike need to make sure that the patients are not put at any additional risk. This is most difficult when dealing with patients who have weak and or absent quadriceps/knee extensor muscles. The typical way of stabilizing patients with weak quadriceps was always to luck up their knee. Now, modern technology allows the knee to be locked in certain phases of gait and allows the knee to unlock at specific times during the gait cycle. If the knee comes unlocked too early, the knee joint will flex prematurely and the patient is put at risk of the knee collapsing and a severe fall resulting in possible fractures and other damage.

Each and every patient dealing with post polio syndrome is unique, each patient has different muscle strength, skeletal development, and each one has a unique way of substituting for muscle weakness and imbalance and has done so for many years. Thus, understanding the complexities of polio gait, body substitution especially in the lower extremities is a necessity for polio clinic staff, physician and orthotists. Understanding the details of what a new knee joint will do and will not do becomes imperative. Not all new technologies designs are going to work for everybody. Orthotic designs need to be distinctive individual for each and every patient. Careful fitting and involved follow-up programs are extremely important. New ways of walking, new ways of tolerating pressures and making a commitment to stay with and weaning into the new orthotics systems can bring some excellent success. However, catastrophic results can becomes nightmares when this new technology is used in the wrong way/ignorantly.

Polio patients who are seeking help must be their own advocates and make sure they are getting professional medical advice from qualified health care individuals. Patients need to take the time to ask around, call health care professionals and ask them about their qualifications. Many times, the local ‘down the street and around the corner type of brace shops’ may be alright for arch supports but may not be the ideal place to look for the type of assistance that will be needed to take care of the complex situations and challenges that arise.

Polio patients need to recognize the quality of thorough evaluations and testing that may be necessary in order to understand the ‘big picture’. Quality clinical evaluations and orthotics plans performed by qualified and experienced health care professionals can and will help keep patients walking and limit the risk involved.

Remember, you the patient, are the most important member of the team and communication ins the best tool you have in expressing your desires and concerns.

[Editors note:- If you have had any experiences with orthotics/bracing/callipers, good and bad, then why not write and tell us. We especially need more UK information on Orthotists who are doing a good job and are knowledgeable on polio and pps. Personally I am still looking for a good Orthotist who will provide me with a comfortable AFO (Ankle foot orthosis) for my dropped foot that not only works but is comfortable, walking, driving and sitting with my feet elevated.]

MEMORY ARTICLE NEXT ISSUE

Memory failing. Losing words like I did on page 3. You know what letter the word starts with, you can describe the word, but the word itself…?? Some years back I took a call from a member, ‘am I getting Alzheimer’s or is it PPS to ask your wife to pass you the short pointed thing that you hit with the hammer into the wall to hang the picture’. Forgetting where you are in a conversation. Mostly happens when you are physically or mentally fatigued. Write and tell us your personal experiences with

memory issues and a selection will be added as a accompaniment to the article. Hilary Hallam [Editor]

Service Dogs for People with Neuromuscular Conditions and those who use ventilators.

By Joanne Kocourek, RN, DDRC

with Annalies Kocourek and Kristen Kocourek, Worth, Illinois. at Post-Polio Health International’s

9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well,

St Louis, MO, June 2 – 4, 2005 Service Dog Tasks

Service dogs generally receive six months to a year of schooling on tasks, obedience and public access manners. Most dogs placed by non-profits since the 1970’s have been trained to assist people who have a wide variety of mobility impairments. Some teams have mastered up to fifty tasks, enjoying the challenge of such an advanced education. The list of tasks in this section are a broad sampling of what has been developed over the past quarter of a century to address daily living needs and safety issues.

Retrieve based tasks.

1. Bring portable phone to any room in

house.

2. Bring in groceries—up to ten canvas

bags. Fetch a beverage or food bowl

3. Pick up dropped items like coins, keys

etc. in any location.

4. Bring clothes, shoes, or slippers laid out

to assist with dressing.

5. Unload towel, other items from dryer.

6. Retrieve purse from hall, desk, dresser

of back of van.

7. Fetch basket with medication and/or

beverage from cupboard.

8. Use target stick to retrieve an indicated

item off shelves in stores

9. Retrieve one pair of shoes from the

closet

10. Drag Cane from its customary location

to another room or pick up ad return

cane if it falls.

11. Drag walker back to partner.

Carrying based tasks (non retrieval)

1. Move bucket from one location to

another. Lug a basket of items around

the house.

2. Transport items downstairs or upstairs

to a specific location.

3. Send the dog to obtain food or other

item from a care giver and return with it.

4. Pay for purchases at high counters.

5. Transfer merchandise in bag from a

clerk to a wheelchair user’s lap.

6. Carry mail or newspaper into the house.

Deposit based tasks.

1. Put trash, junk mail, plastic into a

wastebasket or garbage can or recycling

gin

2. Assist partner to load clothing into top

loading washing machine

3. Put silverware, non-breakable dishes,

plastic glasses, dirty food bowls in sink

4. Deliver items to ‘closet’. Deposit dog

toys into designated container.

5. Put prescription bag, mail, other items

on counter top.

Tug based tasks

1. Open refrigerator, cupboard doors or

drawers with attached strap. Open

interior doors via a strap.

2. Answer doorbell and open front door

with strap attached to lever handle.

3. Shut restroom door that opens outwards

via a leash tied to doorknob. Shut

interior home, office doors.

4. Assist to remove shoes, slippers,

sandals, socks, sweater, coat

5. Drag laundry basket through house with

a strap. Drag bedding to the washing

machine.

6. Pull a drapery cord to open or close

drapes.

Nose nudge based tasks.

1. Cupboard door or drawers—nudge shut,

dryer door—hard nudge, stove door –

push it shut.

2. Dishwasher door—put muzzle under

open door, flip to shut.

3. Refrigerator and freezer door—close

with nudge.

4. Call 911 [999] on K-9 rescue phone—

push the button.

5. Operate button or push plate on electric

commercial doors. Turn on light

switches.

6. Turn on metal based lamps with touch

lamp device installed—nudge base.

7. Assist wheelchair user to regain sitting

position if slumped over.

8. Help put paralyzed arm back onto the

armrest of a wheelchair.

9. Return paralyzed foot to the foot board

of a wheelchair if it is dislodged.

Pawing based tasks (some dogs prefer it to nose nudge)

1. Cupboard door, dryer door—shut it with

one paw.

2. Refrigerator and freezer door—one

forepaw or both.

3. Call 911 on K-9 rescue phone—hit

button with one paw.

4. Operate light switches on wall—jump

up, paw the switch.

5. Depress floor pedal devices to turn on

appliances.

6. Jump up to paw elevator button or

operate push plate on electric

commercial doors.

7. Close heavy front door, other doors—

jump up, use both forepaws.

Bracing based tasks (no harness)

1. Transfer assistance from wheelchair to

bed, toilet, bathtub or van seat—hold,

stand, stay position then brace on

command, enabling partner to keep their

balance during transfer.

2. Assist to walk step by step, brace

between each step, from wheelchair to

nearby seat.

3. Position self and brace to help partner

catch balance. Prevent fall by bracing

on command if the partner needs help

recovering balance.

4. Steady partner getting in or out of

bathtub.

5. Assist partner to turn over in bed; have

appropriate back up plan.

6. Pull up partner with a strap [tug of war

style] from floor to feet on command.

Harness assistance.

based

tasks—Mobility

1. Assist moving wheelchair on flat [partner

holds onto harness pull strap] avoiding

obstacles.

2. Work cooperatively with partner to get

the wheelchair up a curb cut or mild

incline.

3. Haul open heavy door, holding it ajar

using six-foot lead attached to back of

harness.

4. Tow ambulatory partner up inclines

[harness with rigid handle or pull strap

may be used]

5. Brace on command to prevent

ambulatory partner from stumbling [rigid

handle]

6. Help ambulatory partner to climb stairs,

pulling then bracing on each step.

7. Pull partner out of aisle seat on plane,

then brace until partner catches

balance.

8. Transport text books, business supplies

or other in a wagon or collapsible cart.

9. Backpacking— customary weight limit is

15% of the dogs total weight.

Medical Assistance Tasks (Sample)

1. Bark for help on command

2. Find the caregiver on command, lead

back to location or disabled partner.

3. Put forepaws in lap of wheelchair user,

hold that upright position so wheelchair

user can access medication or cell

phone or other items in the backpack.

4. Wake up partner if smoke alarm goes

off, assist to nearest exit

5. Operate push button device to call 911

[999]; let emergency personnel into

home and lead to partner’s location.

6. Fetch insulin kit, respiratory assist

device or medication from customary

place during a medical crisis.

7. Lie down on partners chest to produce a

cough, enabling patient to breathe,

when suction machine and/or care giver

unavailable.

Joanne Kocourek, RN, CCRC, Manager, Clinical Research The University of Chicago, 11336 S Normandy Ave, Worth, Illinois 60482-2134

708 361 1867 ervedogmom@yahoo.com

Two Snippets from the Handouts of Presentations at Post-Polio Health International’s

9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005.

Eating better for better health with your family and friends. John and Jann Hartman, Baltimore, Maryland.

John and Jann Hartman enjoy sharing the cooking and clean-up in their kitchen. They are devoted to eating well despite the constraints of lack of energy and time. Sharing the tasks and planning ahead can make it easier than ever to make your own nutritious foods.

Eating well means that the foods we choose are going to be good for our body. Maintaining a healthy weight (or as near as possible) is a good goal as well as staying as active as possible. Eat heart healthy foods, and serve small portions. WE need to eat well and to eat foods that are nutritious and delicious. [Jann has written us a longer article on this subject for our next LincPIN.]

Planning ahead to stay in your home when getting older: Stephanie Malench, MSW, LCSW, Saint Louis, Missouri.

Shopping with the Five Senses—Here are some general guidelines when shopping for any type of new residence.

Eye scan

During your tour of the potential living environment, notice if the building or unit is clean, uncluttered, and in good repair.

Is it wheelchair accessible (if needed)?

Is staffing visible? Smell

Are there any strong urine, disinfectant, or deodorizer smells?

How does the building smell during meal times (if meals are provide)? Sound

How frequently do the call buttons go off? How does the staff talk to each other?

Is the intercom used frequently? Taste

If a complementary meal is provided within the tour, did it taste homemade, or

commercially mass produced? Touch

Are there positive interactions between staff and residents, between staff, and between residents (hugs, pats on the back)?

[Editors note: We would welcome articles, comments good and bad, problems encountered and ways you dealt with this, hints or tips from any member/family member who has experience of living or visiting polio survivors in hospitals, sheltered accommodation, residential or nursing homes, respite care, etc. ]

Hurricane Katrina

What would you have done if you lived in this area and had to evacuate?

One of our members lives near New Orleans and has had to leave her home and go and stay with her parents in Denver, Colorado. Her home has a little damage but mostly OK, but it could be months before the electric is back on and she can return home. En route in Houston her scooter threw a puncture and a local firm supplied and fitted two wheels FREE of CHARGE. Our thanks to that firm and to the Churches along evacuation routes who stepped in and supplied free meals at motels, etc. Our wishes go to her and her family for a speedy return home. The area affected was the size of England! This has certainly made us think. What would/could we take from our homes if we had to evacuate? Household equipment specially for you? Do you have enough medication? If you need refills whilst you away do you have the paperwork to get this done. What if your health practitioners offices are damaged, do you have copies of your records/prescriptions etc? Are you in an area that could flood? Just looking round this room I can see Video, DVD player, CD’s, DVD’s computer tower, scanner/printer, photo albums on lowest widest shelf…. All would be damaged with just a 10” of water.

Another PPSer on an email list wrote and said she would be stuck if the power went off as her adapted Van is in a garage with an electrically operated door. This prompted responses on back up equipment that you can have fitted.

What would you do about electrical equipment in your home if there is a Power Outage? Richard got stuck once in his electric rise recliner chair in Florida when the power went off—which it does far more often than in the UK. We had fun trying to work out how to get him off that chair but have you thought, what would you do? Last winter we had a power outage within days of returning and the torch battery had run out. Our neighbours laughed when we arrived with an old candle lantern [from our Re-enactment pre 1840 equipment] asking for a light. If you live alone, do you carry a mobile phone/cordless phone around with you as you go round the house/garden in case you need to call for help?

Our members on the Internet and subscribed to our Members Email List will already know that Mary McCreadie has agreed to collect and collate all information on any hints, tips and bits that you have worked out as answers to problems. Photos and patterns would be really helpful as well for some of the ideas. For instance, Pat Galvin has an ironing board fitted into a top drawer and a wheelchair user friends is in a middle drawer. She has also had all her low level cupboard shelves removed and replaced with sliding chrome baskets and a carousel under the sink area. Di Brennand sits on her perching stool in the kitchen but opens the cupboard so that she can put her feet on the shelf. When I have to sit on a settee where there is only one arm to get up with I put my arms out at shoulder height and overlap my fingers on each hand and can use my right elbow as a lever on the arm of the chair to get up turning as I go. Now you will know why we are asking for photos as a description like this is not enough to really understand. Photos can be copied and returned. We already have some great ideas coming from Viola Pahl in Canada including patterns for her Kangaroo Aprons.

Write to Mary McCreadie via the main address or email her on mirarah2@TISCALI.CO.UK

THE TEN COMMANDMENTS OF PPS

Dr. Richard L. Bruno [PhD] and his wife Dr. Nancy M. Frick, [M.Div, Lh.D.]

[First printed in LincPIN Vol 2, Issue 6, August 1999]

After 15 years of searching, archaeologists from The Post-Polio Institute have unearthed the commandments for treating Post-Polio Sequelae (PPS).

1) Listen to Yourself!

Polio survivors often turned themselves off from the neck down after they got polio. The first step in treating PPS is to listen to yourself: to what you feel, physically and emotionally, when you feel it and why. Our most powerful tool in treating PPS is the daily logs our patients keep that relate activities to their symptoms. However, polio survivors sometimes listen too much: to vitamin salesmen saying some herb or spice will “cure” PPS, to other polio survivors who warn that you will eventually have every possible PPS symptom, and to friends and family members (and the voices in you own head) saying you’re lazy and that you must “use it or lose it.” Polio survivors need to listen to their own bodies, not to busybodies.

2) Activity is Not Exercise!

Polio survivors believe that if they walk around the block five times a day, spend an hour on the exercise bike and take extra trips up and down stairs, their muscle weakness will go away. The opposite is true: the more you overuse your muscles the more strength you lose. Muscles affected by polio lost at least 60% of their motor neurons; even limbs you thought were not affected by polio lost about 40%. Most disturbing is that polio survivors with new muscle weakness lose on average 7% of their motor neurons per year, while survivors with severe weakness can lose up to 50% per year! You need to substitute a “conserve it to preserve it” lifestyle for the “use it or lose it” philosophy. Stretching may help pain and nonfatiguing exercise for specific muscles can prevent you from losing the strength you have after you get a brace. But polio survivors need to work smarter, not harder.

3) Brake, Don’t Break.

The follow-up study of our patients showed that taking two 15 minutes rest breaks per day – that’s doing absolutely nothing for 15 minutes – was the single most effective treatment for PPS symptoms. Another study showed that polio survivors who paced

activity — that is worked and then rested for an equal amount of time — could do 240 percent more work than if they pushed straight through. Our patients who took rest breaks, paced activities and conserved energy had up to 22% less pain, weakness and fatigue. But polio survivors who quit or refused therapy had 21 percent more fatigue and 76% more weakness. For polio survivors, slow and steady wins the race.

4) A Crutch is Not a Crutch…

…and a brace is not a sign of failure or of “giving up.” You use three times less energy (and look better walking) using a short leg brace on a weakened leg. Overworked muscles and joints hurt and nerves die after decades of doing too much work with too few motor neurons. So why not use a brace, cane, crutches (dare we say a wheelchair or a scooter) if they decrease your symptoms and make it possible to finally take that trip to Disney World? We know, you’ll slow down and take care of yourself “when you’re ready.” And you’ll use a wheelchair “when there’s no other choice.” Well, you don’t drive your car until it’s out of gas. Why drive your body until it’s out of neurons?

5) Just Say “No” to drugs, unless…

Five studies have failed to find that any drugs that treat PPS. And there have been no studies showing that herbal remedies or magnets reduce symptoms. Polio survivors shouldn’t think that they can run themselves ragged, apply a magnet or pop a pill, and their PPS will disappear. Pain, weakness and fatigue are not-so-subtle messages from your body telling you that damage is being done! Masking symptoms — with magnets or morphine — will not cure PPS. However, two studies have shown that polio survivors are twice as sensitive to pain as everyone else and usually need more pain medication for a longer time after surgery or an injury (see number 10).

6) Sleep Right All Night.

The majority of polio survivors have disturbed sleep due to pain, anxiety or sleep disorders, such as sleep apnea (not breathing) or muscles twitching and jumping all over your body during the night. However, polio survivors are usually not aware that they stop breathing or twitch! You need a sleep study if you awaken at night with your heart pounding, anxiety, shortness of breath, choking, twitching, or awaken in the morning with a headache or not feeling rested. “Post-polio fatigue” may be due to a treatable sleep disorder.

7) Some Polio Survivors Like it Hot.

Polio survivors have cold and purple polio feet because the nerves that control the size of blood vessels were killed by the poliovirus. Actually, polio

survivors nerves and muscles function as if it’s 20 degrees colder than the actual outside temperature! Cold is the second most commonly reported cause of muscle weakness and is the easiest to treat. Dress in layers and wear socks made of the silk-like plastic fiber polypropylene (sold as CORTEX or THINSULATE) that holds in your body heat.

8) Breakfast Is the Most Important Meal of

the Day.

For once Mom was right. Many polio survivors eat a Type A diet: no breakfast, coffee for lunch and cold pizza for dinner. A recent study shows that the less protein polio survivors have at breakfast the more severe their fatigue and muscle weakness during the day. When our patients follow a hypoglycaemia diet (have 16 grams of low-fat protein at breakfast and small, non-carbohydrate snacks throughout the day) they have a remarkable reduction in fatigue. Protein in the morning does stop your mid-day yawning.

9) Do Unto Yourself as You Have Been

Doing For Others.

Many polio survivors were verbally abused, slapped or even beaten by therapists or family members when they had polio to “motivate” them to get up and walk. So polio survivors took control, becoming Type A super-achievers, “the best and the brightest,” doing everything for everyone except themselves. Many polio survivors do for others and don’t ask for help because they are afraid of being abused again. Isn’t it time that you got something back for all you’ve done for others? Accepting assistance is not the same as being dependent. Accepting assistance can keep you independent. But appearing “disabled,” by not doing for others, asking for help or using a scooter, will be frightening. Remember: If you don’t feel guilty or anxious you are not taking care of yourself and managing your PPS.

10) Make Doctors Co-operate Before They

Operate.

Polio survivors are easily anesthetized because the part of the brain that keeps them awake was damaged by the poliovirus. Polio survivors also stay anesthetized longer and can have breathing trouble with anesthesia. Even nerve blocks using local anesthetics can cause problems. All polio survivors should have lung function tests before having a general anesthetic. Your complete polio history and any new problems with breathing, sleeping and swallowing should be brought to the attention of your surgeon or dentist – and especially your anesthesiologist – long before you go under the knife. Polio survivors should NEVER have same-day

surgery or outpatient tests (like an endoscopy) that require an anesthetic.

The Golden Rule for Polio Survivors: If anything causes fatigue, weakness, or pain, Don’t Do It! (or do a lot less of it.) ..and… The Golden Rule for Polio Survivors’ Friends & Family: See no evil, hear no evil and help only when asked.

Polio survivors have spent their lives trying to look and act “normal.” Using a brace they discarded 30 years ago and reducing their super-active daily schedule is both frightening and difficult for them to do. So, friends and family need to be supportive of life-style changes and accept survivors’ physical limitations and new assistive devices. Most important, friends and family need to be willing to do the physical tasks a polio survivor should not do, but only when the polio survivor asks. Friends and family need to know everything about PPS but say nothing: neither gentle reminders nor well-meaning nagging will force survivors to use a new brace, sit while preparing dinner or rest between activities.

Polio survivors must take responsibility for taking care of themselves and ask for help when they need it.

Dr. Richard L Bruno is currently the

Director, The Post-Polio Institute,

[International Centre for Post-Polio Education and Research and Fatigue Management Programs Englewood Hospital and Medical Center] Englewood, New Jersey U.S.A. 07631, and Chairperson, International Post-Polio Task Force, Phone: (201) 894-3724 POSTPOLIOINFO@AOL.COM

Dr. Nancy M. Frick – (Polio Survivor) Executive Director Harvest Center, inc. and Director of Education

International Post-Polio Task Force

HarvestCtr@AOL.COM

Dr. Richard Bruno is a Clinical Psychophysiologist treating and studying mind/body problems, including chronic pain, fatigue and stress, as well as Post-Polio Sequelae (PPS).

Dr. Nancy M. Frick is an educator, author, counsellor and researcher specializing in the psychology of disability and Post-Polio Sequelae (PPS), the devastating new symptoms affecting 76% of North America’s nearly two million polio survivors.

Hints Tips and Bits

From Ann Post in Missouri postann59@YAHOO.COM

I feel like my body has gotten totally out of shape since the arthritis got worse, so my doctor suggested I join a fitness club and start exercising … I decided to take a stretching class for people with arthritis. I bent, twisted, gyrated, jumped up and down, and perspired for an hour. But, by the time I got my leotards on, the class was over.

From Pat Galvin in Southern England— patgalvin@WAITROSE.COM

I got a life line with help from REMAP. They are a UK wide organisation of mainly retired engineers etc. who, invent or adapt equipment to our individual needs. They do not charge but appreciate a donation. Your local CAB should have your nearest contact – each county have their own reps. www.remap.org.uk

From Mary Guild from Scotland mary.guild@shell.com

Holiday accommodation – The attached websites might be of interest to you if holidaying in the UK and I’ve also attached two in France which are owned by disabled people so therefore accessible. www.radarsearch.org

www.montcuq.com/tourisme/tourism_sites/ calvet/calvet.htm

This one is a superbly adapted (including a lift!) 14th century building with magnificent views in the Lot – owned by a French wheelchair user who lived in England

www.jcgites.freeuk.com/index.html

This one is in Burgundy and owned by an English wheelchair user and his physiotherapist wife who live in Maidstone.

It looks really excellent but is quite large and expensive so would have to be shared with other people to make it economical.

Sign Language

How do mathematicians communicate? Sine language..

How do biblical prophets communicate? Heavenly Sign language.

How do astrologers communicate? Star Sign language.

How do naval cadets communicate? Ensign language.

How do couturiers communicate? Design language.

How do lighthouse keepers communicate? Shine language.

How do real estate closers communicate? Sign here and Sign here and Sign here language.

How does everyone communicate on December 31st?

Old Lang- syne -uage.

How did Gertrude

communicate at the Bavarian Oktoberfest? She used Stein language.

How do lovers communicate? Sighin’ language.

How do tech writers talk? Manually.

To Use or Not to Use { with apologies to William Shakespeare }

To use, or not to use: that is the question: Whether ‘tis nobler in the mind to suffer The going to the shop for one item and out again, Or straining the shoulder joints by using crutches. Not listening to doctors, ‘I am not there yet’ ‘I did not give in then, I will not now; Use wheels, change my lifelong goals? The answer is NO, I will not change, I am not listening, don’t take me there. To change, perhaps improve, must be a joke, For if I change ‘disabled’ labels will I get. I am a Polio Survivor. I do not give in. Must pace and rest, listen to advice, Goes against the goals of my whole life. She can’t do that, we can’t go there, I can, I will, I did and on I’ll go, On foot with canes, the steps to climb. Tell me retire from work, No way! Work, Sleep, No social life, that’s me. I’ll stay here and read my book, you go, With grandkids off to run and play, I’ll be ok, I have my book. I tell no truth, with them I want to be, Electric wheels, with them I could have gone, Why is making change so hard to start To take that plunge it strains my heart, Five miles instead of twenty yards. Why do I continue with my ‘not yets’, My doc’s advice of electric wheels, Fills me with dread, a downward step. Meet others like me and watch their joy, Comfy seats, simple controls to hand, Would I like to try? To do the same as you, I try, what joy, less pain, less weary, Why have I been so stubborn?

By Hilary Hallam – (who still needs to take her own advice at times]

Soliman MG, Higgins SE, El-Kabir DR, Davidson AC, Williams AJ, Howard RS. Guy’s, King’s and St. Thomas’ School of Medicine, St. Thomas Hospital,

Lane-Fox Unit, Lambeth Palace Road, London SE1 7EH, UK. Respir Med. 2005 Oct;99(10):1217-1222. Epub 2005 Apr 12.

In patients with poliomyelitis, respiratory failure requiring ventilatory support may occur during the acute illness. Some patients continue to require long-term nocturnal ventilatory support; others are weaned but subsequently require support because of a late deterioration in ventilatory function.

OBJECTIVES: To assess the sensitivity of sniff nasal inspiratory pressure (SNIP) to post-poliomyelitis respiratory muscle weakness and to assess the relationship between the respiratory muscle strength and the need for ventilatory support in patients with previous poliomyelitis (post-polio patients).

METHODS: Respiratory muscle strength was measured in 50 post-polio patients. Tests included forced vital capacity (FVC), maximum inspiratory and expiratory pressures (MIP and MEP), and SNIP.

RESULTS: Twenty-one patients used non-invasive nocturnal ventilatory support (NIV group) compared to 29 on no support (non-NIV group). The percentage predicted FVC was significantly lower in the NIV group compared to the non-NIV group (P=0.01). Similarly, the percentage predicted MIP was significantly lower in NIV group (P=0.007). Low SNIP values (both absolute value and percentage predicted) were associated with the need for ventilatory support (P<0.001). Of the patients requiring no support, those who had been ventilated during the acute episode of poliomyelitis had a significantly lower SNIP than those who had never been ventilated (P=0.04).

CONCLUSIONS: Post-polio patients who are currently on nocturnal ventilation have significantly lower FVC, MIP and SNIP compared to currently non-ventilated patients. Non-ventilated patients who were ventilated during the acute episode of poliomyelitis have significantly weaker respiratory muscle strength than patients who were never ventilated. This study indicates that SNIP is more sensitive to post-polio respiratory muscle weakness than other non-invasive tests. Thus measurement of SNIP is a valuable tool for monitoring the progression of respiratory muscle weakness due to previous poliomyelitis and this can be applied to other neuromuscular disorders.

Respiratory Medicine, Vol. 99, Issue 10 October 2005, Pages 1217-1222

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/001187.html

Polio and Post-Polio related news items from news sources around the world.

From the Lincolnshire Post-Polio Network Website.

September 7th 2005.

Linc Pin Volume 5 Issue 6 Read More »

Linc Pin Volume 5 Issue 5

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 5 — August 2005

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

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

ANNUAL GENERAL MEETING—22ND OCTOBER 2005 SEE PAGE 19 AND SEPARATE ENCLOSURE

Art Work by Chris Salter

“Throwing a large bucket of black paint at a white wall, ending up with one large blob and lots of little blotches everywhere else. That’s POLIO.”

Dr. Alberto Esquenazi at Post-Polio Health International’s 9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005.

CONTENTS. Page 2—Contents, Donations, Contact Information. Page 3—Editorial Page4—Message from the Chair Page 5—Treasurers Thoughts Reports from the PHI 9th International Conference Pages 6 to 9—Trauma Treatment, What is it and what are the benefits Pages 10 to 18—Analysing your Gait, The role of exercise, bracing or surgery? Page 19 Pages 20 and 21—Emotional Impact Page 22, Letters to the LincPIN Page 24—ICE and the ‘Southport Gang’

WE WOULD LIKE TO THANK THE FOLLOWING FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Dianne Lightfoot, Ewan Peddie, Sylvia Fortune, Jim & Jenny Rayner Joan Deans, PAB Peacey, V. Scrivener, T. Croker, K.F. Preece,

London & Scandinavian Metallurgical Co. Ltd £150 via member Tom Croker Anne Brown , Iris Jarvis, Barbara Anne Stevens, M.S. Kelly, A. & D. Fenner, DD&P Barr VE Parkinson, V Holland, R.K. Staniforth, Sheila Dunnett, Denise Carlyle, Hilary Hallam, Mary Kinane, Robin & Pauline Butler, Di Newman, Chris Salter, Barry & Olivia Branston

Di Brennand and the phone team – Pat Hollingworth, Margaret Edmonds, Judy Barter Lincolnshire Post-Polio Network – UK Registered Charity 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 0 1522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – October 2005

Articles for publication 15th September by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Internet Services Administration Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Please note that there is an enclosed sheet with this newsletter regarding the Annual General Meeting on October 22nd 2005 to be held in North Hykeham, Lincoln, Lincolnshire. Please help us plan the event by posting the reply slip or emailing Sheila Dunnett with the information.

This newsletter contains three reports from Post-Polio Health International’s 9th International Conference on Post Polio Health and Ventilator Assisted Living: Strategies for Living Well. We will be adding more reports in future newsletters. I am particularly pleased to be able to report on the presentation by Dr.’s Esquenazi & Keenan [pages 10 to 18]. This report is compiled from notes I made at the time, and an audio record, of the presentation. Specifically I would like to draw your attention to the following points that the doctors made during their talk:-

Doctor’s Esquenazi and Keenan

• have learned now that Manual Muscle Testing is not a good way to assess

muscle strength. They now use hand held dynamometry as a way to test

strength because a grade 5 muscle—normal—could have as much as 30%

weakness before Manual Muscle Testing could detect it.

• have found out that it is really difficult to truly improve muscle strength. That

they do see, and can measure, some improvement in muscles strength after

adjustments with bracing, lifestyle, weight etc, but they think that once people

have stopped abusing their muscles they just recover their base line strength.

It is very important to continue to exercise to maintain that strength and

flexibility and prevent disuse weakness

• have learned that if we have weakness in our legs then we will end up with

problems in our shoulders and wrists

Patients tend to

• overestimate the strength of their muscles

• underestimate the demands they place on their muscles every day

Health professionals need to

• Understand that each patient is different

• Understand the pattern of strength and weakness, and the compensations

that have been developed over time.

• Look at the whole person not just the leg, or both legs, and how patients do

actions of daily living.

What did I learn from this talk? I looked at my daily life and current problems. One is that after walking a few paces I become more round shouldered and unable to hold my head up straight. I know I can stand and walk straighter when wearing my long leg brace. It unlocks at the knee as I take my weight on my other leg which means I can walk normally and not stiff legged as I do when not wearing it so my knee does not collapse. I mistakenly thought that if I was going to be spending most of the day out on my scooter, or only going to be walking a few yards, then I could leave it off…. but I can see now that I was wrong. I have been putting more weight forwards and causing more strain on my neck, back and legs. I now wear this every time I go outside the house and can already see a huge difference. Amazing what we don’t want to ‘see’! We need to be our own medical detective and try and work out why we have changed the way we are doing actions of daily living.

Greetings readers and we hope that this edition finds our members and their families and friends well after an interesting and weather-filled summer. Whether you live on this eastern side of the pond from which we write, or on t’other side, or in the lower hemisphere, extreme temperatures and even floods will have affected some of you. We hope all our members are safe and well.

We would like to thank member Tom Croker for the donation of £150 from his former employer, the London & Scandinavian Metallurgical Co. Ltd.

In this edition, we continue to report back on topics of interest from PostPolio Health International’s 9th International Conference on Post Polio Health and Ventilator Assisted Living: Strategies for Living Well held in St. Louis, Missouri on June 2nd through 4th 2005. Unfortunately even with three of us attending we were unable to attend all the presentations as most times there were six choices. This issue I have done a report on Stephanie T. Machell’s talk on Trauma Treatment, taken from my notes at the time and from the audio presentation.

One of the messages which I took home from this conference is that it is essential to continue to share knowledge and information about what works for polio survivors, what is new in the areas of alternative therapies (and there is a lot out there that is of some interest) and what some of the more traditional health professionals are saying. I would like to thank my friends and relatives who donated £450 in total towards the cost of my trip.

We were pleased while we were still in St Louis to learn of the British Medical Journal’s highlighting of the issue of post-polio syndrome – Consultant Neurologist at Lane Fox. Dr Robin S. Howard’s article has a good list of references (including our website – which pleases us and confirms that it is one of our strengths); this is followed by a commentary from “Alice” about her experience of diagnosis of post polio, written by member Dr. Ruth Bridgens, Sociologist. If you missed the reference in June’s issue – here it is again:

http://mt.lincolnshirepostpolio.org.uk/archives/pandpp-news/000778.html

I look forward to seeing as many of you as can join us for the AGM. Our speakers Mark Rainey and Dr. Darren Barnes-Heath are looking forward to telling you about their work and answering your many questions. Please return the enclosed slip [or email the information] to Sheila Dunnett. This is all the news for now. Enjoy the summer days and contact us with your experiences, opinions or questions, via any of our contact details on the second page of the LincPIN.

Mary Kinane, Chair mary.kinane@lincolnshirepostpolio.org.uk

Your support.

Jenni Paulger once again very kindly completed the necessary forms

this year to reclaim tax through the Inland Revenue. At the end of June we received a cheque for £459.16. I would like to thank all those who were able to take advantage of the Gift Aid scheme. Gift Aid provides a great opportunity for taxpaying members to increase the value of their donations to LPPN.

I would also like to thank all those who recently sent donations either along with your responses to the questionnaire, or with membership renewal forms. All those £5 or £10 cheques really add up, helping us to continue in our work.

Newsletter Questionnaire.

A big thank you to the 54 people who responded to the questionnaire – some by post, others by email. Here are the numbers!

1. What do you feel your membership fee covers? 26% felt this was payment for their newsletter. 68% felt it covered, or should cover, both newsletter costs and support for LPPN.

2. 15% wished to continue to receive their newsletter 6 times a year, while 83% were happy to receive it 4 times a year in future.

3. 55% want to continue to receive their newsletter by post. 31% would be happy to receive theirs though email. Several members felt one way to reduce costs would be to access the newsletter through the LPPN website.

4. An increase in the annual membership fee to £12.50 suited 24% of respondents. 55% of respondents thought an increase to £15 was appropriate. A reduction in the number of pages was thought to be a good idea by 35% (who opted for 20 pages) and 28% (who opted for 16 pages) since reduced weight would lower the cost of postage. 20% of respondents wished the newsletter to maintain its current length. 13% felt the newsletter should vary in length depending on the amount of quality information available.

Several people felt that these were editorial decisions and that it was up the committee to decide such issues. There were many excellent money saving suggestions, which the committee will discuss at their next meeting. Fundraising ideas were numerous – from holding a scrabble evening, a pub quiz or having a tabletop sale, to organising a safari supper, a local youth club non-stop event or an able-bodied/wheelchair sponsored walk. Every £5 raised helps. Several members asked if they could be put in touch with other members to help organise a fundraiser together. Many members felt unable to directly contribute to fundraising efforts due to advanced age and/or the severity of their health problems.

I would welcome any suggestions/comments you might like to make. You can contact me via email: denise.carlyle@lincolnshirepostpolio.org.uk

“Trauma Treatment: What is it and What are the Benefits? A review of Stephanie Machell’s presentation

at Post-Polio Health International’s

9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005.

Compiled by Mary Kinane from notes taken at the presentation and an audio record.

This is a personal review of a hugely interesting subject, which caught my attention as soon as I registered for the conference. All attendees had the same dilemma of having to choose which presentations would best suit their curiosity and needs, or the interests of their groups. On this subject, I decided to trust my instincts and to go for something which I thought would speak to me personally, as well as to pique my interest and even broaden my horizons. Coincidentally (or otherwise) this topic has already done all three of these things! I would like to share some of my impressions, as well as some background to the topic, with you the reader. I should point out that I am condensing a great deal of detail into this review, but I hope I have succeeded in bringing out the salient (and to me, fascinating) points in Stephanie Machell’s talk.

I knew nothing about trauma treatment, or the subject of post-traumatic stress disorder (PTSD), before June of this year. Stephanie Machell, PsyD, (International Rehabilitation Center for Polio, Framingham, Massachusetts) knows quite a bit about this subject, from both an academic and a practitioner’s point of view. Her presentation began with an overview of the last twenty years of popular therapeutic practice and belief, taking the audience through a whistle-stop tour of accepted practice in trauma therapy (and related subjects) in the U.S.A. (and perhaps in a more understated way, in Britain) for the last two decades. “Talk” therapy, giving the client the benefit of person-centred listening skills, the “how does that make you feel?” approach to modern counselling has been the mainstay of the therapy session for the last 25 years. Ms Machell went on to put the case forward for the need not just to “talk about” past traumatic experiences (even if we can remember them) but also for the need to approach them from a number of perspectives at the same time. She described how traumatic experiences, especially of a long time ago (for example contracting polio, being rushed to hospital, being separated suddenly from parents/siblings/community) can be re-stimulated in our bodies long after the polio crisis is over, and can have lasting effects on our physical, cognitive, emotional and spiritual health.

Early trauma treatment (1980’s) consisted of dredging up “horrible” memories, reliving them, pounding on pillows etc:- that was how trauma was treated. The problem with this method was that the nervous system didn’t know the difference between that experience (i.e. re-living it) and being traumatised. This re-living of a trauma meant that the patient was only being brought through the trauma all over again. Crucially, people can get addicted to this process because the body releases opiates when a person re-lives trauma. The client literally becomes addicted to the therapy because of the re-stimulation and the opiates released.

Thankfully, this is not how trauma treatment is done today. Ms Machell started using the newer approach to trauma treatment as early as the late 80’s (when it was still quite controversial) and to think about trauma in a different way. “Now we have kinder, gentler trauma treatment – then again if you’re the person going through the trauma treatment it may not feel gentler – it is painful to work with any kind of trauma – talking about why it might be important with people with post polio especially to deal with any potential past trauma that they may have had….”

She went on to say: “How do you find professionals (and with what techniques) in mental health who have any experience of polio or post polio syndrome?” Ms Machell’s own father is a polio survivor… in his thirties, from the Boston epidemics in the 1950’s. A person trying to make meaning from a traumatic event will need varying techniques which can help – “adults who had polio may recall actual events, but children deal with these things differently”.

“If I experienced trauma, does that mean I have Post-Traumatic Stress Disorder? No! Not everyone who experiences trauma develops PTSD or other psychological problems. However, it may still be helpful for someone who experienced trauma to received psychological treatment (see under What sort of treatment is available to me?)

The symptoms of PTSD include intrusive thoughts about the event(s), dreams, flashbacks, intense distress when faced with reminders of the event(s), avoidance of reminders of the events(s), amnesia for all or part of the event(s), sleep disturbances, muscle pain, restricted emotional range (can be coupled with a tendency to become intensely angry or a low level of constant irritability), difficulty concentrating, hyper-vigilance, and an exaggerated startle response. Some of these symptoms may alternate (e.g., intrusive thoughts with avoidance of reminders).”

“PTSD is a bi-phasic (two-sided) disorder, going from intrusive memories to the second phase of numbing out and the losing of memories”. When people have had more chronic trauma, they get frozen into one of the two responses (more often the numbing response) but sometimes into feeling over-whelmed and “flooded”. A good example of the flooding response (when people have lots of intrusive memories) is with Vietnam Veterans, during fireworks on the 4th of July.

Stephanie’s view is that all polio survivors have high sensitivity. Various environmental triggers stimulate emotional memory. When a trigger stimulates an emotional memory, it manifests at a physical level through the production of adrenalin and cortisol, as well as other neuro-chemicals. For a polio survivor – a trigger can be the smell of wet wool, or a particular kind of hospital smell. The brace clinic can be a significant trigger for traumatic memories “…many things are associated with the brace clinic”. Stephanie said she sometimes “thinks she should be stationed just outside the door of the brace clinic” as there are so many triggers which patients experience while there. Another common feature of triggering is that people will have feelings and they won’t really know why they’re having them. Triggers can get disconnected from the original traumatic event. This is very

common with adults, who as children were traumatised at early ages; trying to connect a feeling with a memory is difficult because they were too young to consciously remember the original event.

Irritability and “startle responses” are known as “autonomic hyper-reactivity”, where those with a PTS-related condition tend to respond in very intense ways to the world in general. But, there can also be the opposite effect – (“a constricted affect”) so that a person can find expressing emotions difficult – for example; a man or woman can find him/herself unable to share their feelings of happiness with their children, and for which modern trauma treatment can help.

So, what is good trauma treatment, and how do we go about accessing it? “Linda Bieniek created an extensive list of psychological treatments for trauma describing their risks and benefits (see Resources below). Working with a psychotherapist who is well-trained and experienced in trauma is essential. Few will be familiar with polio or pps, but should be willing and open to learning more.” What good trauma treatment addresses is to try to teach our bodies to re-regulate (the biology of trauma consisting of too many “fight or flight” hormones – adrenalin and cortisol – getting pumped through your system). If the trauma wasn’t talked about (which in the main it was not where polio in childhood was concerned) you can spend years pumping adrenalin and cortisol and all kinds of other neuro-chemicals that do things to your body and sensitise you, in reaction to all sorts of events, and the parasympathetic nervous system takes a long time to work (to clean up) and while it’s doing its work you feel tired and your muscles ache. (enter pps symptoms?!).

Helping your body to self-regulate can include the following therapies and, according to Ms Machell “…you’re looking for somebody who can help you to learn a number of self-regulation techniques”, which can include the following:

1. Meditation helps to re-train the central nervous system; also it is the most

accessible as a self-help technique.

2. Yoga.

3. T’ai Chi (this can be done to some effect sitting down)

4. Vitamin intake and diet (food influences on mood)

5. Bach Flower Remedies (working on the mental and emotional levels –

homeopathic)

6. Meridian (Energy) therapies (acupressure, shiatsu, acupuncture,

meditation)”

7. EMDR (Eye Movement Desensitisation and Reprocessing).

N.B.: All the above techniques help to support patients through therapy, and help to by-pass a lot of the work that used to be done in trauma treatment (memory work). Intervention on the level of the spirit/energy: if you intervene on the “energy” or energetic level, you can get a lot out of energy therapies… it works for what ails you, and there are good supportive techniques for the hard work of psychotherapy; there are techniques for pain-management; and there is EMDR (as above). Interestingly, Ms Machell sees EMDR as an energy technique… (some don’t) “hitting the right points and clearing things out”. EMDR deals with how memory is stored – (and traumatic memory is stored differently from other memory); the

memory unreels like a news-reel – when it unreels it unreels fully and completely – “once it gets going it’s very hard to stop it – EMDR helps to break down the memory and helps to re-store it as “normal” memory. It’s like taking an antacid…”.

The above is a combination of direct quotes from a transcript of Stephanie Machell’s session, or sections from the abstract provided in the programme notes to each conference participant. Otherwise, the review is in my own words. I did some follow-up reading when I got home, and have included an extra reference below. I hope that this piece will have provided some stimulating perspectives on alternative approaches to healing and treating pps. It is my view (and my experience) that while we need to continue to seek the best from our traditional medical practitioners, we also need to take more responsibility (and be more in the driving seat) for our own health – we need to explore ways to try out these techniques safely, and not at great cost (either emotionally or financially) to ourselves.

Stephanie T. Machell, PsyD.

Roots & Wings Psychological Services, Office: 5 Watson Road, Belmont MA 02478

Resources: Books & Articles:

Kabat Zinn, Jon (1990) Full Catastrophe Living: Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness. (This is an excellent introduction to mindfulness and yoga exercises that might be useful with trauma survivors, and those with heart conditions and chronic pain) (U.S.)

Phillips, Maggie (2000) Finding the Energy to Heal: How EMDR, Hypnosis, TFT, Imagery and Body-Focused Therapy Can Help Restore Mind-Body Health. (an excellent introduction to some of the newer treatments available – highly recommended)

Bieniek, Linda (2001) Emotional Bridges to Wellness Polio Network News, Fall 2001, Vol 17, No. 4 (this and the subsequent articles are the best ones on how and why to deal with the trauma of polio).

Bieniek, Linda & Kennedy Karen (2002) Pursuing Therapeutic Resources to Improve Your Health, Polio Network News, Fall 2002, Vol 18, No. 4.

Useful Organisations:

Sidran Foundation (www.sidran.org) a great resource for info about trauma treatment, including therapist referrals). (U.S.)

The Association for Comprehensive Energy Psychology (ASAP)– a good source for accessing practitioners of above techniques; try a word search on the internet for ASAP’s website. (U.S)

Added Reference (writer’s note): When I got back to England I read a fascinating article by Dr Nick Baylis, Lecturer in Positive Psychology at Cambridge University, in Dr Feelgood’s “On the Science of Happiness”, on EMDR and other techniques, in The Times of Saturday 16th July 2005. (this is a regular weekly article in Saturday’s Times).

You can e-mail Dr Baylis on drfeelgood@thetimes.co.uk for more information on PTSD, Clinical Hypnosis and Rewind Therapy, from a British perspective). (U.K.)

Analyzing Your Gait: The Roles of Exercise, Bracing or Surgery?

A review of Dr. Esquenazi and Dr. Keenan’s presentation at Post-Polio Health International’s

9th International Conference on Post-Polio Health and Ventilator Assisted Living: Strategies for Living Well, St Louis, MO, June 2 – 4, 2005.

Compiled by Hilary Hallam from notes taken at the presentation and an audio record.

Dr. Alberto Esquenazi, is a rehabilitation physician and Director of the Gait & Motion Analysis Laboratory at Moss Rehabilitation Hospital in Philadelphia.

Dr. Mary Ann Keenan, is an orthopaedic surgeon and Professor of Orthopaedics and

Chief of the New Orthopaedics Service at the University of Pennsylvania.

“As you know quite well there is not a lot of expertise out in the real world in the realm of post polio syndrome. Unfortunately it’s a disease that we don’t learn in medical school. It is a disease that is not taught in health care in general but is one that is critical to individuals like you.” [Esquenazi]

“There is no better way to treat Post Polio than to prevent it, so we are always encouraging people to think about polio prevention” [Esquenazi]

Both doctors ran the largest Post Polio Clinic in the mid Atlantic for ten years. The combination of both members of their team afforded them the privilege of dealing with many complex cases over the years. They learned much from Polio Survivors about their condition and experiences and were able to implement that knowledge into the care of other patients. Due to local politics they have ended up working in separate establishments but developed some special arrangements to continue collaborating. They have a multi disciplinary approach and encourage periodic evaluations. They educate their patients and believe peer support is critical so are always surrounded by patients only too willing to help. They counsel patients on modified exercise programs, on activity adjustments, on weight control, bracing and in a few circumstances surgery.

Dr. Esquenazi defined polio, post polio and the nature of polio muscle weakness. He explained how braces help to substitute for that weakness, and how in his clinic they optimise brace alignment and fit.

“Acute poliomyelitis is an infection of the anterior horn cells in the spinal cord and usually it will present as a febrile episode with weakness, with stiffness and with pain.” [Esquenazi]

There are about 1.5 million polio survivors alive today in the U.S.A. [USA population of 297 million, about 0.5%] and about 20 million polio survivors in the world [World population of 6,455 million, about 0.3%].

PPS usually presents a variety of problems, muscle weakness, overuse syndrome, nerve injuries, joint derangement, and the natural aging process.

He stated that patients tend to overestimate the strength of their muscles and often present with pain in, say, one area. However, it is not a focal disease but a systemic disease and affects the whole body. It had a larger effect in the areas where clinical

paralysis and weakness were seen. He described polio as “throwing a large bucket of black paint at a white wall, ending up with one large blob and lots of little blotches everywhere else. That’s POLIO.”

Dr. Esquenazi went on to discuss Manual Muscle Testing, describing it as the old way that testing was done! i.e. basically grading muscles from 0 [with no muscle strength] to 5 [normal muscle strength]. “That is the way it was done and is continuing to be done in many places. We have learned now that that is not a good way to do it. We now use hand held dynamometry as a way to test strength because a grade 5 muscle—normal—could have as much as 30% weakness before Manual Muscle Testing could detect it.”

According to Dr. Esquenazi, the meat of the matter is calf weakness, and everyone needs to appreciate what this means. He explained that our calf muscles have to hold our whole body weight when we are in the stance phase, to prevent us falling. That we have to lose a huge amount of calf weakness before it is detected by strength testing. When we walk we take many steps which is what needs to be assessed, not just one step.

He explained how we also underestimate the demands that we place on our muscles every day: just sitting, keeping our head and back straight plus demands on our legs to cross them and move them around. Then add walking! Also as we get older we tend to get a little bigger, and he added that Americans tend to get a little bigger than the bigger, adding to problems and producing fatigue.

A review of the information provided by the 500 patients in their clinic showed that most patients complained of fatigue. A large number complained of muscle pain, joint pain, muscle weakness, new muscle weakness, cold intolerance, atrophy, problems with walking (almost 80%) and stair climbing.

He then talked about the consequences of trying to walk. He explained that we have been compensating for decades, and our joints pay a price for that. He showed a film of a lady with a large amount of back flexibility in her knee joint, stretching, straining and damaging not only muscles and tendons, but also skin, nerves and vessels—ending up with a complaint of pain.

He said “many of you got to the age of 17 and 18 and decided ‘No more braces’ with the thought that ‘if I can get rid of my braces then I am better.’ Unfortunately we know now that that was not a good idea. Plus you hide your braces. President Roosevelt worked endlessly to hide his so that he did not appear to be ‘disabled’.” In their Gait Laboratory they put a series of little infra-red sensory stickers on a patient that allows them to convert the human figure into a computer animation so they can measure how we walk in great detail. This can be manipulated and rotated and viewed from any perspective. They can measure the speed, symmetry and displacement of joints and do this without and then with bracing.

He then showed a slide of a gentleman carrying a very large toolbox and asked why do you think this patient came to visit us. There was a lot of laughter when the first person called out, ‘His fingers are tired’. ‘Yes, and he is also likely to get backache and shoulder problems. Can you guess his job?’ I replied, ‘something very strenuous because he is a polio survivor’. Dr. Esquenazi told us that he is a maintenance engineer in a huge Casino with endless corridors and has to carry all that he might need with him; that he wrote to his employers and the Union to

explain that he needs to put wheels on this toolbox so that he can retain his health and job.

He then went on to explain that there are two phases to walking, the stance phase when the foot is on the ground and the swing phase when the leg is off the ground. Braces and adaptive postures can do a great job at substituting for stance phase muscles but there is nothing to help swing phase muscles so they are very vulnerable to overuse.

“There are old style and new style braces but unfortunately the new style braces, even though they are lighter and more visually appealing, have become more and more ones that are brought out from a factory and shoved on a patient. The art of making braces is dying.”

He explained that people are not going into training, that Insurance Companies do not want to pay for braces, and that dealing with polio survivors is a pain because they know what they want and it never comes out right.

What does a brace do for us? It substitutes for weak muscles. The brace produces support to the leg when standing, and when walking, where the foot is in the stance phase. In general it does nothing in the swing phase although there are a few exceptions. Braces do nothing for us when we are sitting—although sometimes they make our leg uncomfortable.

Weak calf muscles mean that the tibia bone is not held strongly, and wants to fall forward, tending to make the knee buckle. So what do we do? We use our hand to push back on our thigh, or maybe just snap our knee back into hyperextension. The next thing we do is to take short steps, which do not strain our legs as much. We may complain that we cannot keep up with our friends and are fatiguing, but it could just be taking short steps—longer ones might cause our knee to buckle. Or we may walk with our knee stiff so that it does not have to make that effort. The answer is to put a brace on it.

Braces [AFO’s: ankle foot orthosis] come in all colours and shapes so the first step is to try to pick one that is visually acceptable to the patient. Although it might not seem the first criterion, they want us to wear it. Secondly it must be properly mechanically built. Thirdly it must not hurt. He asked how many patients in the room wore braces; how many have a sore or callous and a few people kept their hands up. He explained this was not unusual; that we are willing to tolerate calluses, rubbing, high pressure, because it lets us do more, but this is not acceptable and it shows how tolerant we can be. “Go back and have your brace reassessed.”

In his clinic they tend to use braces that are hinged and have movement—although that is not universal—because when the foot hits the ground it needs to get flat to make us stable. If the foot is not allowed to do that then we need to make extra effort, bend our knee early, flex our hip earlier, and do things to accommodate this, which will usually strain our thigh muscles.

Back knee deformity is another very frequent problem usually aggravated if the foot

is stuck in a toe down position. A long time ago surgery to stabilise the knee was sometimes to put your foot into a fixed position pointed down. It can be prevented but it’s not easy once it’s started and we tend to need a long leg brace. Long leg braces KAFO’s [knee ankle foot orthosis] come in many flavours and shapes. At their clinic they like to use braces that are not locked at the knee if at all possible. Where feasible they like to allow ankle movement but this has advantages: moving the foot up and down gives a more natural gait, adding a little spring to kick the foot up if necessary— and disadvantages: it has the potential for unwanted ranges of motion; the brace can become loose, the joints not doing what they are supposed to, and they require more maintenance, replacing parts and pieces where necessary.

In their clinic they use spring assisted braces, ultra light-weight carbon graphite and the newest of all, weight activated braces that lock as your weight goes down on them and unlocks as your weight comes off. While not without problems they work for some people.

Shoulder and wrist problems when walking! Dr. Esquenazi said they have learned that if we have weakness in our legs then we will end up with problems in our shoulders and wrists, either from pushing a wheelchair, pushing ourselves up to stand, or leaning heavily on crutches. He then showed film of a patient who helped with their research, followed by an animation showing how she stood up from a chair. “She uses her head and twists her pelvis in an awkward manner. Now we can try and figure out what is causing this. Think hard of the extra problems, the extra stress and strain on her shoulders and wrists if she weighed more.”

Sometimes they can make braces for upper limbs but they are a little harder to do and less effective than lower limb braces.

“Key Issues to remember.

1. The earlier you apply a brace the better because you will reduce some of these

strains and problems down the line.

2. The lighter the brace the better because it will take away the strain during the

swing phase when you have to ‘carry’ the brace.

3. Where possible have your brace optimised for alignment at least twice a year.

Remember you take it off at night and stand it against the nightstand and it falls

over and could now be out of alignment. If you think it now feels a little stiff, or

has a kink in it, get it checked out.

4. Your relationship with your Orthotist is long term. Find a knowledgeable and

preferably bracing experienced physician to work as your advocate. Take a third

person with you to help ensure that you both understand what you are saying.

5. You are taking the brace home—the brace maker will tell you it looks good—but does it feel comfortable?”

“I will now hand over to my colleague Dr. Mary Ann Keenan”

[Editors note to help UK members understand some of Dr. Keenan’s comments. In America you will find that many surgeons specialise in only one area of the body, so you can get a surgeon who only does knees, and one who only does feet.]

Dr. Keenan started by talking about Exercise, saying, “We have found out that it is really difficult to truly improve muscle strength.” She said that they do see, and can measure, some improvement in muscles strength after adjustments with bracing, lifestyle, weight etc, but they think that once people have stopped abusing their muscles they just recover their base line strength. It is very important to continue to exercise to maintain that strength and flexibility and prevent disuse weakness.

Their guidelines are:-

• Low resistance and low impact – not exercising against a lot of force. Water

exercises sometimes are helpful as you have the buoyancy of the water to

support you against the resistance of the water.

• Short duration – say two minutes – of exercise for each area of the body, rotating

the different muscle groups.

• Do not exercise any group of muscles to the point of fatigue.

• Take frequent rest periods.

Dr. Keenan then went on to talk about surgery. Surgery is not a huge part of caring for people with post polio problems but if you do need surgery then it’s important to have an

• Anaesthesiologist – “who understands the issues of post polio and the need to

go light on all their many drugs”

• Surgeon – who accepts and practises the holistic approach to surgery, someone

who goes beyond looking at the leg in question, to both legs, arms and in fact

the whole body.

• Knee surgeon – who understands how the foot impacts on the knee, how a weak

calf can lead to knee problems.

People who have a little weakness in their calf have to use their quadriceps in the front of their thigh more strenuously leading to kneecap problems, grinding of the kneecap and tendonitis in the thigh muscle. If the calf is even weaker with backknee then you can have more serious problems. Dr. Keenan has seen patients who have had their knee scoped a couple of times, by good surgeons, nibbling away at their meniscus because of tears, who did not realise that the problem was being caused by the weakness in the calf. It is really important for health professionals to look for the underlying cause.

She explained that she performs surgery for pain relief, correction of deformity, on occasion redirecting some muscles’ forces with tendon transfers, stabilising joints and to reshape a leg or foot so that a brace can be made which will provide good structural support. “Getting rid of that brace was a 50’s and 60’s idea but it is no longer appropriate”.

Dr. Keenan tells all her patients that there is a lot she can do for our legs but we have to save our shoulders, the key to our independence. We need to minimise the mechanical force we put on our shoulders, e.g. pushing up to get out of chairs, leaning heavily on crutches etc.

Dr. Keenan then went on to talk about specific problems.

Rotator Cuff Problems – caused by overuse of shoulders. MRIs are taken of the shoulder joint, but Dr. Keenan ensures that this also covers the muscles that control that joint; looking at the actual tears in greater detail, and also to get some concept of the quality of the muscles that work that joint. If the muscle is filled with fat then you know it does not have much muscle strength. To reattach the tendon there needs to be enough muscle fibre to work the shoulder again. Rotator Cuff Surgery is a big investment of patients’ and family’s time because during recovery you cannot use that arm whilst the shoulder is healing. It is imperative to look at what actions caused the tear so that you modify how you do the action to prevent it occurring again. Some strength can be lost but overall the results are good.

Carpel Tunnel Syndrome – surgery is not always necessary. It may be as simple as changing grips on canes and crutches, or better leg bracing so you don’t have to lean so heavily on aids. Where this has been going on for some time with significant arthritis, where really severe, she might stabilise the wrist to get rid of the pain but this takes away the motion so she tries to avoid this type of surgery.

Equinnus – toe down position. When you walk and your toes go down first instead of your heel. It is like having a built-in doorstop pushing you backwards and jamming your knee backwards. Here she lengthens the Achilles tendon to get the flexibility back again and get the foot flat on the floor but the trade off is loss of some strength. This tightens the toes so they snip the tendons to allow the foot to lie flat in the shoe.

Cavus – a high arched foot. To help you get a foot or foot and brace into a shoe your foot needs to be flatter. If there is no arthritis they can release the ligament on the bottom of the foot and let the bones go back into their normal position. If there is a lot of arthritis then they add a little wedge of bone. She showed a video of a patient whose foot and ankle were fused in the toe down position with the idea that it would push her knee back/stabilise her knee and so not need a brace. Now in her 50’s she was having knee pain so Dr. Keenan cut through the mass of fused bone to flatten the foot and gave her a new brace, which solved her problem.

Valgus – foot that rolls over and pronates, flat foot. Having this type of foot can make it difficult to fit a brace, so realigning the foot into a better position will give a better base of support. Abnormal feet put abnormal forces on knee and hip which can cause pelvic wiggle movements and back strains, causing knock knee or valgus deformity. This can be caused by one leg shorter, weakness of hip muscles, tightness of the band on the side of your leg, or a crooked foot. A lot of different factors to be considered before treating. It may just need a lift on your shoe and a cane, or Dr. Keenan may need to release some tendons, realign the bone and sometimes if significant arthritis replacement joint surgery is necessary.

Varus – bow legs. There is no surgery to tighten up the ligament and joint capsule behind the knee. Long leg bracing can control this unless it’s really severe with lots of arthritis when knee replacement is considered.

Quadriceps weakness – very common in polio survivors. The quadriceps are the muscles that help us stay upright. If our knees are flexed – not able to straighten them – then we ask the quads for more help. If we have weak quads and flexed knees then we are more vulnerable to falls and we lean more heavily on our arms. If bracing does not work then surgery is considered to lengthen some tendons, cut the bone, realign the knee or replace the joint.

Hip flexion problems – make us lean forward and put strain on our muscles and back using up an enormous amount of energy to compensate; energy which we are already short on as polio survivors and should not be wasting.

“If you let go of a plastic skeleton it collapses. It is the muscles that control the flexibility of joints and depending on where your body weight is in relation to how a joint moves normally, then you either need to have the muscles control that flexibility or a brace that controls it.”

Joint replacement – for polio survivors there are a lot of special considerations regarding all the other implications of the combinations of patients’ muscle strengths. It is imperative that patient and medical personnel work as a team. Patients need to understand the ultimate restrictions that this surgery will place on them. If you have already damaged a normal joint then you will wear out the metal and plastic joint in the same way unless you change how you do actions. Other leg deformities have to be corrected as well and it may be necessary to use a lower leg brace as well.

• Contracture of a joint – you don’t have normal motion. You can have laxity in one

direction or the other because of stretched out ligaments and joint capsules.

With little muscle strength you need to compensate.

• Bones – if you have a lot of weakness or paralysis in a limb then bones are

much weaker, and there may be more osteoporosis, making fixation of the knee

or hip joint challenging.

• Hip Abductor and Hip Extensor Muscles – you need pretty reasonable strength

of these muscles to keep the ball and cup of the hip joint together. There is a

certain inherent stability to a ball and cup design and they can pop out of

position if you don’t have the muscle strength to hold it together.

• Arthritic hip and low muscle strength – make it impossible to do a hip

replacement and alternatives have to be considered.

• Constrained hip joint replacements – not used with polio survivors with weak

muscles because it is just going to transmit all the forces onto the bone making

it weak or osteoporotic and the replacement rip out from its setting. An

alternative to get some pain relief might be to control the position of the leg by

cutting the pelvis making a roof over the hip joint. A video was shown of a lady

who had this surgery and six years later is still walking and has pretty

reasonable relief of pain.

Planning for surgery and post-op rehabilitation – Dr. Keenan coordinates with Dr. Esquenazi and the team at Moss Rehab and all treatment is pre approved. As surgery realigns the leg the brace maker comes into the operating room to make the mould and it’s fast tracked so rehabilitation can proceed.

Dr. Keenan then showed short videos of two patients.

1. A 56 year old with bad deformity presenting with back pain. She has no

muscle strength in left leg, significant weakness in right leg. Left arm also

completely paralysed. Total knee replacement, long leg brace for left leg and

short leg brace for right leg. 14 years later and she is still walking and going

well. BUT she had to promise me that she would never stand on her left leg

without the brace to protect it.

2. Knee bending inwards – valgus or severe knock knee, given total knee

replacement. Shown walking two weeks after surgery with the knee joint

locked to protect some tendon repairs. Now able to walk without the knee joint

locked because as much motion as possible is wanted. This shows her 2

years post op and it is now six years later and she is still doing quite well.

Special considerations for polio survivors pre surgery – because of weakness, paralysis, osteoporosis, and/or abnormal shaped bones, there needs to be a lot of work done ahead of time.

• Look at the whole person not just the leg, or both legs, and how they do

actions of daily living.

• Each patient is different and we need to understand that the pattern of

strength and weakness, and the compensations that have been developed

over time.

• Coordinate with anaesthesia team regarding anaesthesia and for inter and

post operative pain management.

• Coordinated team approach with rehabilitation and bracing.

• Custom joints may need to be made.

As Keenan stated, “Our job is to avoid your garage or closet being filled with a bunch of failed and discarded devices”.

Dr. Keenan then told the audience that they had helped produce a booklet, freely available on the Einstein Website, to help us save our shoulders.

Booklet

Save Our Shoulders: A Guide for Polio Survivors

by Jennifer Kuehl, MPT, Roberta Costello, MSN, RN, Janet Weschler, PT. Investigators, Mary Klein, PhD, Mary Ann Keenan, MD, Albert Esquenazi MD.

http://www.einstein.edu/rx_files/yourhealth/mrri_sos9510.pdf

Dr. Esquenazi and Dr. Keenan then answered some questions.

Question 1 – What can be done for weakness of upper spine and neck to support the head? Answer – Surgery to stiffen the neck is a major operation which would transform the forces onto the next area of spine that was mobile and would only be done as a last resort. Bracing is the usual answer providing the patient does not have breathing problems as the brace would normally transform forces to the chest wall. Braces could be worn

intermittently. The other option to relieve pressure on the neck would be to tilt the chair back.

Question 2 – How many other medical teams like you are there in the world?

Answer – There are other centres that do polio and post polio but they tend to be more focused on the psychosocial side of things. Our strength is in the medical, orthopaedic and rehabilitation areas. Other clinics like ours that we are aware of are Rancho Los Amigos in Los Angeles started by Dr. Jacquelin Perry, one in Germany, and one in Northern Italy.

Question 3 – Can we get our ‘orthopods’ to talk with you, or do we have to come to your clinic or Rancho Los Amigos?

Answer – It would depend on the complexity of the problem. Orthopaedic Surgeons do not get a lot of training in polio and post polio and are not used to working in a team environment. We have formed a symbiotic working relationship where we have learned much from each other for the benefit of our patients.

Question 4 – Asked about pain.

Answer – They are not pain specialists; they work in the biomechanical area. They believe that pain is a sign of something else and that addressing that something else most times brings pain relief to patients. Patients will be referred to Pain Clinics if needed.

Question 5 – Can I be evaluated by you and come back to my own area for treatment? Answer – Dr. Keenan responded that for most polio survivors she sees she does not recommend surgery and refers patients to Dr. Esquenazi. That she does see patients from far away and tries to educate her patients to go back and educate their other care givers. Dr. Keenan said “The first thing we always assume is that the patient is correct and maybe we don’t understand why you are right or what the issues are, but unlike some orthopaedic surgeons who say that the patient is an unhappy person, or a complainer, I try to figure out why whatever you have been doing is not working for you, even when I am the one that said do that. Sometimes we are wrong, or just don’t have the right alignment of braces and sometimes we have to go to a more sophisticated evaluation in a laboratory setting so we try to work through it together.”

Question 6 – I am from the UK and we rarely get a chance to be referred to a gait laboratory. We get manually muscle tested done a single time and our repetitive and sustaining problems come later than the time we are tested. Could you make a video to help solve this situation?

Answer – Dr. Esquenazi explained that gait analysis is a relatively new technology. That there are probably 20 gait labs in the UK but half are devoted to research. Dr. Keenan said she had just been to an excellent lab in the UK whose focus was on Cerebral Palsy. Dr. Esquenazi said he was in the U.K. two weeks ago at a two and a half days conference just learning about the basics of normal walking not pathology. He said “More than once I have had my Fellows and Residents look at a patient and tell me ‘normal strength’ and I say, ‘Nix, come on lets go over and look at this patient together’. This patient, not meaningfully, not in a wilful manner, has done you a nice trick and showed that the strength of the hip is 5 when the strength of the hip is really 2. So you need to be able to pick that up, and that’s experience. There is no way to learn that in a quick way. Making a video sounds lovely, but in reality you need more than that.”

Lincolnshire Post Polio Network Annual General Meeting Saturday 22nd October 2005. 10.00 to 4.30 p.m.

North Hykeham Day Centre,

Neale Road,

North Hykeham, Lincoln, LN6 9UA.

Tel 01522 689534

From the A1434 at the Traffic Lights

turn south onto Moor Lane [between Schools] At the traffic lights at the crossroads turn right

Take first left onto Clarke Road, Right on Perney Crescent, Right on Neale Road and the Day Centre is on the right at the end of this cul de sac.

Plan for the Day

AGM commences 10.15 a.m.

Followed by Speaker at approximately 11.30 a.m.

Mr. Mark Rainey, Social Services, a Carer Services Co-ordinator

Buffet Lunch approximately 12.30 p.m.

2.00 p.m. Speaker – Dr. Darren Barnes-Heath, BSc, D.C. C.C.E.P. A Doctor of Chiropractic specialising in Neurological conditions in Lincoln.

Survivors and looks forward to answering your questions. Tea, Raffle, General Questions and Chat ending at 4.30 p.m.

PLEASE POST OR EMAIL INFORMATION FROM ENCLOSURE RE AGM.

A1434

Yesterday I was hit by a ball of anger that I have not experienced in a long, long time. Pure hard cold anger that has caused me to have a huge temper tantrum. This is the emotional impact that PPS has in my life at times. I had dealt with this anger on a large scale before I found out that I had PPS.

All I knew at the beginning was that I was loosing life as I had known it and I didn’t know why. When one of my Doctors talked about putting me in the hospital entirely for depression, I went into a huge rage. I knew I was angry. Big time angry but I knew I had a problem. The problem was physical. No, I couldn’t explain why I would vomit so hard and long that I would end up in the hospital. (I vomit when I get extremely fatigued). I also have SLE (Lupus). Doctors blamed my problems on that until my lab reports started showing that my Lupus was coming under control.

I couldn’t explain why I fell several times a day. I couldn’t explain why I was so exhausted by the time I got to work that I couldn’t stand long enough to look up documents in the files for the boss. My supervisor started doing the stand up stuff for me if I needed to stand when I first got to work. I couldn’t explain why I reached the point during each day when I could not hold a pen and there was no way I could put enough pressure to get copies through the multiply carbons required. Then, the fastest, most accurate key punch person in the office started making errors. Why in hell was my left hand no longer working properly on the computer?? Angry?? YES!! This was in the late 80’s. Thank God not all of my Doctors turned their back on me.

But it was an old friend who brought a

news paper to Robert and showed him a long article about PPS. This lady is about 2 or 3 yrs. Older then me. She was a neighbour when I had Polio. She remembered. She knew of the problems I was currently having. That was amazing. I read and reread that paper. I was reading about people who were having the same problems I was having. Doctors had treated them as the one Doctor had treated me.

There was a phone number for more information. I called. The lady who answered spoke in low tones. She had trouble breathing. After a few questions she gave me a crash course in making the best of it and resting more. She frightened me. I had a lot of but, but, buts and she was reaching the point she couldn’t talk much longer and with much irritation she explained that she could no longer wipe her own butt. She asked me if I wanted to be in the same condition!! Talk about getting my attention – she got it!

Within the same week, another friend brought me a smaller article from a magazine. It was small enough I knew my good Doctor would read this all the way through. The article and I went to the Doctor. He read every word twice! When I left his office, I had an appointment with a Neurologist who had just returned from a conference about PPS. And that was the beginning of knowledge, progress and a complete new way of life. I learned quickly. The Neurologist used me to teach others. But, I did not talk with this Doctor or any of my other Doctors about the anger I was dealing with.

I was very busy adjusting, adjusting and helping others do the same. Even so, days would come when I would struggle with the emotional impact of all of this. My response was cold, hot anger! I

learned to tell my family that I was not angry with any of them. I was having trouble dealing with all the changes in my life.

Yesterday, my son, Daughter-in-Law and Grandson came for a visit. They brought a Blackberry Cobbler that they had picked the berries on their property and son had baked the cobbler. We had a perfect visit. It was too hot, but I went outside to check on my flowers. I came inside to cool off once and went back out and did some transplanting. Yes, this kind of work is demanding but it is one of the things I love and can still do with in limits. LIMITS—LIMITS—LIMITS.

The old anger hit me hard and unexpected. Robert thought he had done something. The dogs went to another room. I explained my emotions to Robert. Robert likes to fix my problems. He was/is helpless to fix this!! My butt hurt from sitting so long in my wheelchair. My back hurt. My shoulders hurt. I could deal with the physical pain.

The emotional impact – that’s another thing. You can’t rub your emotions. You can’t put a heating pad on them. I was dealing with too much anger to go to bed where I needed to be. This was the first time this amount of anger has boiled within me in a long, long time. I didn’t see it coming. I was shocked. I was disappointed in myself.

I had a visit with myself. OK, so it’s been a long time. Even so, I still remember my other life. I wanted my other life back. There was no way to get it back. I like to get what I want. Day light was about to peek upon me before I went to bed. But, me, myself and I had come to terms with each other.

I wish I could honestly say that I’m so happy & bubbly and life looks so good

this day. That would be a lie and that would be pushing my emotions in the corner instead of dealing with them. I will not push my emotions into a back corner of my mind. I will face them. I will be fine. I’ve fought the anger before.

Being me, I don’t expect to ever be thankful that I have PPS and SLE. Being me, I will survive and laugh and play and work and enjoy life. The rocks, bugs, flowers, family, sun, rain, snow and friends and the many, many wonders of life. I will enjoy them. I will be thankful for my wheel chair and all the other items that give me such a full life.

Why do I share this?? We have some new members. I want to tell you, hey, it’s ok to be upset with the changes in your life. You will react in your own way. We are all different even though we have so much in common. I also want you to know that you can share your problems with the emotional impact just the same as you can share your physical pain and just the same as you can share your smiles.

All my love to each of you, be you new to PPS or be you an oldie.

MARGARET E. DAVIS, Arkansas. <med43@earthlink.net>

[Margaret gave us permission to use this text from an email she posted to the St. Johns University Polio Email List. She would love to hear from other PPS’ers, especially those in the UK. If you don’t have email then write via our main address and we will forward your letters. Why not add a leaflet about where you live.]

LincsPPN Members Email List—If you have email and are not subscribed [or have changed your email address since subscribing] and want to join email membership@lincolnshirepostpolio.org.uk

Dear LincPIN,

Having a weak left hand, and needing to hold onto something, due to unstable legs, while deadheading and pruning in the garden, I have been searching garden centres while on holiday, or here locally, as well as newspaper advertisements for one handed secateurs— without success.

After 12 months and nearly giving up, I contacted the British Red Cross who gave me the address of a firm in Sheffield. The girl who answered my telephone call (Jo) knew exactly what I wanted and took my order.

These secateurs arrived in just over a week, are well made, and what I have been looking for, and work as expected. I can now hold onto something and do my deadheading without falling into my rose garden. Incidentally they can be adjusted to the thickness of the stem.

Barry Branston. Chapel St. Leonards, Lincolnshire.

CUT AND HOLD PRUNER Amazing and incredibly ingenious gravity defying cutters for thorny stemmed or skin irritating plants – from roses to brambles. The action of squeezing the handles together to complete the cut also causes the gripping device to lock the stem holding it securely in place for release into a flower basket, trug or compost heap, without having to pick it up. The cutting mechanism of these pruners uses a ‘bypass’ action to ensure the cleanest healthiest cut. GTO/CHP

Burgan & Ball Limited, La Plata Works,

Holme Lane, Sheffield, S6 4JY 0114 233 8262 sales@burgonandball.com

£14.95 P&P £3.95

I contacted the Company for a catalogue and they recommended that we also look at the following tools.

1. Topiary Shears — Hand forged in our Sheffield factory from high-carbon steel,

these shears are already recognised by the Arthritis Society for their ease of

use. They are used single handed, leaving the other hand free, and are suitable

for all types of topiary and soft garden trimming.

2. Circlehoes — Brilliant weeding tools from the USA which make for effortless

weeding and healthier plants. Suitable for general maintenance of a weed-free

environment in cultivated soil – particularly in heavily planted areas.

3. Winged Weeders — Suitable for very fast and effective weeding in shrub beds

(in already cultivated soil) – without having to bend over. These tools use a four

bladed head to slice through the top layer of soil, consequently preventing ‘ dryout’.

HAVE YOU FOUND ITEMS THAT MIGHT HELP OTHERS?

Dear LincPIN,

I would like to express my appreciation for all the work that Hilary has done in the preparation of the new self assessment forms that were introduced at the International Conference in St. Louis this past June. I know how much time and effort went into it because we discussed these forms by e-mail for many months prior to their final finished product. It shows the true dedication of someone who is willing to put herself out there to help others with pps. I truly hope that people still having difficulty with their GP’s will use these forms and discuss them with their doctors. Dr CarolVandenakker, who was their reactor at this conference is doing great work at her clinic at U.C. Davis in Sacramento, California and every time I visit the staff comment on how thrilled they are to have someone like her on the staff and how much her patients love her. I would not have found her if it had not been for Hilary so my hat is off to her for all her dedicated work.

I read the article in the last LincPIN about eyes but I think my problem is slightly different. My right eye weeps a lot and a doctor I saw prior to Dr. Vandenakker said that she noticed that the right eye blinks slower that the left. My vision blurs after any concentrated use e.g. reading, Knitting etc. (that is, close work). It tends to take about 30 minutes for my eyes to readjust. According to an ophthalmologist I visited a few months ago there is nothing wrong which leads me to believe that this is another result of polio (possibly bulbar). I would be interested in hearing from anyone who may have similar problems and if they have found anyone in the medical profession who has any thoughts on it. I can be reached at evh@pacific.net or write to me via the main address.

Jean in California [lived in Lincoln UK as a child.]

Another snippet from Western Australia Post Polio Newsletter,

June 2005 (Vol 16: no2): Tessa Jupp, RN.

“Problems with SLEEP??

I keep getting people in with disturbed sleep and poor memory problems. Taking zinc before bed at night has helped so many people. If you can’t turn the brain off, and you keep thinking – take 2-4 chelated zinc gluconate tablets (each tablet will be about 4mg elemental – which is 27% of the EC recommended daily allowance) – it helps with short term memory loss too”

Note from Mary: I decided to try this advice recently, and I have to say it seems to be working, and I have had no adverse reaction. I have reduced my normal 10mg dose of amitriptyline at night to 5mg, and am getting a reasonably good night’s sleep. (This is also if I give myself the chance to wind down before going to bed). You could try the extra zinc at night whether or not you rely on amitriptyline (elavil in the U.S.).

Mary Kinane. Chair. mary.kinane@lincolnshirepostpolio.org.uk

Help out in a crisis – with ICE

A Cambridge-based paramedic, Bob Brotchie, a clinical team leader for the East Anglian Ambulance NHS Trust, has launched a national campaign to encourage people to store emergency contact details in their mobile phones.

By entering the acronym ICE – for In Case of Emergency – into the mobile’s phone book, users can log the name and number of someone who should be contacted in an emergency, e.g. ICE daughter.

Follow these hints to get the best out of ICE:

Make sure the person whose name and number you are giving has agreed to be your ICE partner. Make sure your ICE partner has a list of people they should contact on your behalf – including your place of work.

Make sure your ICE person’s number is one that’s easy to contact, for example a home number could be useless in an emergency if the person works full time.

Make sure your ICE partner knows about any medical conditions that could affect your emergency treatment – for example allergies or current medication.

Should you your preferred contact be deaf, then prefix the number with ICETEXT. For more information see http://www.icecontact.com/

Pictured having a get together in Southport are from right to left – Di Brennand (LincsPPN telephone team), Anne Ashcroft,

Judy Barker (LincsPPN telephone team) Ann Jones and

Carol Lenton.

All suffer from PPS apart from Carol who was affected with transverse myelitis two years ago. Carol’s husband Dave who took the photo, also has PPS. The group get together every couple of months for a chat, coffee and exchange of news and ideas. Why not form a friendship group around where you live with other PPS sufferers? Put a note in your GP’s surgery or library. It only has to be a handful of people for informal get-togethers, support and friendship. Our group is full at six, just enough for each others sitting-rooms.” Di Brennand.

Linc Pin Volume 5 Issue 5 Read More »

Linc Pin Volume 5 Issue 4

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 4 — June 2005

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

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

Lincolnshire Post-Polio Network’s Website is referenced in new article followed by another article by Member Ruth Bridgens in the

BRITISH MEDICAL JOURNAL

BMJ 2005;330:1314-1318 (4 June), doi:10.1136/bmj.330.7503.1314

Poliomyelitis and the postpolio syndrome

Robin S Howard, consultant neurologist1

1 Lane-Fox Unit and Department of Neurology, St Thomas’ Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London SE1 7EH

Excerpt from full article—Management

The effective management of postpolio functional deterioration requires a multidisciplinary approach involving both specific management of increasing impairment and a process of enabling patients to cope with new disabilities. Polio survivors are often extremely motivated and driven; they have conquered their disability, often by ignoring it completely, and have the most remarkable stories of achievement.24 However, many continue to deal with increasing disability by intensive exercise regimens to regain muscle mass, strength, and function. Although some exercise is necessary to prevent wasting and stiffness from immobility, it is essential to strike a balance so that exercise regimens alleviate symptoms without causing increasing weakness and fatigue in damaged muscles.

Excerpt from Resources—Useful websites for patients

Lincolnshire Post-Polio Network (www.ott.zynet.co.uk/polio/lincolnshire/)—extremely helpful resource

centre established by a UK regional group with valuable and accurate links to relevant articles and clinical and research sites

http://bmj.bmjjournals.com/cgi/content/full/330/7503/1314?etoc

BMJ 2005;330:1318-1319 (4 June), doi:10.1136/bmj.330.7503.1318

Postpolio syndrome—”We aren’t dead yet”

Ruth Bridgens, PhD candidate, medical sociology1

1 School of Social Sciences, Cardiff University, Cardiff CF10 3WT http://bmj.bmjjournals.com/cgi/content/extract/330/7503/1318

CONTENTS.

2 Contents and Information 3—Editorial by Hilary Hallam

4 Message from the Chair Mary Kinane

5 Treasurers Thoughts from Denise Carlyle

5 Cholesterol Drugs May Increase Risk of Nerve Damage

6 Eye Exercises

7—17 How self-assessment can help you in obtaining better care from health professionals.

(a summary of our presentation to the PPHI Conference.

18—22 Questions about Creatine Kinase by Gladys Swensrud, Polio Survivor, San Diego 23 Funnies.

24 Selected slides from PHI Presentation.

WE WOULD LIKE TO THANK THE FOLLOWING

FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Barry Branston, John Doohan, Val Scrivener, Ewan Peddie, Jenny Rayner, Sylvia Fortune, The Brennands, Maureen McAvoy, Claire Colfer, Steven Clynch, Christine Darlington,

Hilary Davies, Barbara Bradley, Kathleen Burrell, John De’Ath, Carole Murray, Jennie Paulger, Marguerite Standing, Ian Atkinson, Jane Shaw, Ann Telford, Simon Parritt, Lynn Hobday, Pamella Minnitt, Catherine Paterson,

Sheila Dunnett, Denise Carlyle, Hilary Hallam, Mary Kinane, the Butlers, Di Newman, Di Brennand, Pat Hollingworth, Margaret Edmonds, Judy Barter

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 0 1522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – August 2005

Articles for publication 15th July by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Internet Services Administration Chris Salter – netadmin@lincolnshirepostpolio.org.uk

Mary, Denise and I attended the 3 day Post-Polio Health International Conference in St. Louis Missouri last week. Three very full days of conference meetings, networking, and renewing and making new friends. We had a great, though exhausting, time and the next three newsletters will include reports from this Conference. This issue I will focus on our own presentation. The next two issues Mary and Denise will be reporting on the remainder of the conference.

EDUCATE YOUR

HEALTH PROFESSIONALS

IF THEY KNOW LITTLE ABOUT PPS

THEN FIND SOMEONE WHO DOES

OR WHO IS

WILLING TO WORK WITH YOU

So many times this was said by the Polio and PPS knowledgeable health professionals presenting to us.

It must be very difficult and embarrassing to be a health professional and have a patient come in for an appointment who has more knowledge about their condition than you do.

I believe that this imbalance has led to some patients being told that ‘pps does not exist’, ‘you do not have pps’, when in fact some years later after further rounds of hospital departments they get that diagnosis. What happens in the intervening years, the patient is likely to suffer from a variety of issues:-

∗ Overgraded muscles leading to:

1. Weakness reported not being

corroborated

2. Exercise program set too high

3. and in some cases operations

where muscles are not strong

enough to complete recovery,

∗ Turned down for benefits,

∗ Turned down for medical retirement,

∗ Not allowed aids and equipment that

would allow you to manage your life

more effectively,

∗ Untold stress that your reported

symptoms are not believed leading in

many cases to family, friends, and

work colleagues believing you are

just being lazy, making it all up, and

if only you would just make that little

more effort you would be fine again.

Some are being divorced or worse!

In the UK we have free health care but we pay for this in our taxes. We can pay to see health professionals in private practice to speed up the waiting time for the appointment and/or treatment. In the USA patients are paying for Health Insurance or if on Medicare paying 20% towards the cost of the appointment and have to find health professionals who will take the often considerably reduced amount Medicare dictates for each procedure.

We are paying something towards the cost of the appointments but expected to provide information on our condition. With tongue in cheek, maybe we can work out a sliding scale of payments to us for the amount of information we provide. What bugs me more than anything is the enormous waste of money spent on all the unproductive appointments whilst we search for help that could be used to improve the quality of our initial assessment.

I urge all Polio and PPS Organizations a n d k n o w l e d g e a b l e H e a l t h Professionals to work together and ask Colleges of Medicine to address this situation. Provide all students and graduates with more information now.

Welcome to the newsletter. We had a good response to our questionnaire issued in April, and are still assessing the responses coming in. Please continue to send your responses to recent questions, if you haven’t already, but have been meaning to!

As chairperson, it behoves me to put readers’ minds at rest concerning matters to do with the charity, as well as to provide transparency on the work we do as an elected committee. We need to remind readers that our constitution binds us to strict rules of adherence when it comes to spending money. Our treasurer has just completed the Charity Commission’s audit, and we also have rigorous financial audits on an annual basis, to which all members are entitled to have access. As the chair of this organisation, I am re-assuring our readers that NO funds will come out of the charity’s budget for the up-coming trip to Post-Polio Health International 9th Annual Conference in St Louis. Hilary Hallam is raising her own funds and is putting long hours into the preparation.

Two volunteers, namely Mary Kinane (the writer) and Dr Denise Carlyle are also raising funds privately to attend what we see as an important networking event about matters to do with managing PPS and delivering information back to polio survivors. We see this as a valuable opportunity, not only to meet others working in this field, but also to bring back useful and current thinking on various topics around PPS – we think that our members deserve to have this feedback, which will be delivered in a number of stages via the newsletter on our return. We also feel that attending and presenting on Self-Assessment will help to enhance our conference and presentation skills, especially in light of our current project with NHS Trusts in England, to disseminate information and raise awareness about PPS as widely as possible.

In May two volunteers were hosted by our Dublin friends to make a presentation on Polio Partners, at the PPSG’s AGM. We look forward to the feedback from Robin & Pauline, as well hearing news from old friends.

In recent times, many volunteers have stopped claiming ordinary expenses incurred during the course of their valuable work – e.g. printing and postage costs for writing to new members, phone calls made at home, petrol expenses, etc. They do this because, as members will know, we have been operating on small grants for some time, ‘though we still manage to pull through – thanks to regular donations from some members and periodic donations from others. We do not expect everyone to donate – we are only too aware of the financial constraints on some who find it difficult even to claim the benefits in the UK to which they are entitled. We welcome all contributions, whether financial or in kind – we couldn’t continue to run things as they are without these voluntary contributions of time and energy as well as money.

We wish all our members good health and a happy summer.

Best wishes

Mary Kinane. Chair

mary.kinane@lincolnshirepostpolio.org.uk

Firstly I would like to thank all of our members who took the time to send me back the questionnaire in the April newsletter by post or email. Preliminary findings indicate that these members feel that reducing the number of newsletters per year, cutting the number of pages per issue, and increasing the annual membership fee would be acceptable ways of reducing costs. If you have not sent your questionnaire back and wish your voice to be heard, I urge you to send it to me as soon a possible before the findings are finalised at the end of June.

Many members generously sent donations of £5 or £10, and I wish to thank you for helping us to continue to support polio survivors. There were also many useful suggestions as to the way forward for LPPN, which the committee is looking into. I would welcome any suggestions/comments you might like to make. You can contact me via email: denise.carlyle@lincolnshirepostpolio.org.uk

From Neurology May 14th 2002, 58: 1321-1322, 133-1337

Cholesterol-lowering drugs called statins may increase the risk of nerve damage called neuropathy. But the well known benefits of statins far outweigh the risk of neuropathy, which remains very low. Peripheral neuropathy occurs when nerves in the peripheral nervous system – those outside of the brain and spinal cord – become damaged. Symptoms may include tingling, numbness and burning pain as well as decreased sensitivity to temperature or pain.

Diabetes, kidney disease, thyroid disease and alcohol abuse can all lead to neuropathy, but the nerve damage, known as polyneuropathy when it affects more than one nerve, may develop independently of these conditions.

As more and more people have started taking statins on a long-term basis, a small number of patients have developed cases of nerve damage with no apparent or obvious

cause. Investigators report the results of a larger study that seems to confirm the link between statins and neuropathy. In the population-based study in a Danish county, the researchers identified 166 first-time cases of neuropathy that did not have an obvious cause.

The cases were divided into definite, probable and possible cases, depending on how certain the researchers were that the nerve damage could not have been caused by some other condition. Nine of the patients had taken statins, with the average length of treatment being nearly 3 years.

Compared to a control group of people who did not have neuropathy, people who had taken statins were 4 to 14 times more likely to develop polyneuropathy that did not have a known cause. Several of the statins taken by patients in the study list peripheral neuropathy as a possible side-effect.

See special note at the end of article on Creatine Kinase by Gladys Swensrud pages 18to 22].

From a recent phone enquiry to PPS WA (Post Polio Syndrome Western Australia)

Shireen: Since all my muscles got weaker some years ago, when the doctor had me on those cholesterol-reducing drugs, now I have problems with my eyes too. They don’t seem to focus very well. I have tried taking Vitamin A and B2 but still have problems. What else can I do?

Tessa Jupp: This is an eye muscle problem, not a vision problem. Eyes need exercising to keep them going just like other muscles. Here are 2 simple ones to start off with that will help your eye muscle focus. Do them 2-3 times a day when you are not tired.

1. Hold a pen tip (or even a fingernail)

at arms length and slowly bring up to your

nose, keeping your eyes focused on one

point – then move out again. Repeat this

several times.

2. Draw a line on stiff 9” by 4” piece of

cardboard and draw a cross every inch

apart. Hold one end up to your nose and

shift your focus on each cross getting

closer up to your nose, then go back out

again. As you get better at it, count to 5

then 10 etc at each cross, maintaining

the focus at that point for the count.

You should see the lines cross like

railway tracks at the point you are

focusing on. Repeat 5 times, several

times a day.

[Editors Note—on eye problems.]

Going back about 7 years a discussion took place on the St. Johns Polio List about eye problems. Four people took their problems to a small email list and compared notes. My eye problems where visual disturbance for a short time and difficulty when going from a lit room to the dark, I had hawked this round

the Eye Departments of two hospitals over 4 years. I had had numerous tests, and you guessed it… could be peripheral neuropathy but the test results don’t match. ‘Can you imagine what they would have said if I had said, has my waist down paralytic polio got anything to do with this?’

I was asked a few questions by the polio survivor in Australia and was told that their problems matched mine and he gave me the information from his optician to take to mine. I made an appointment and asked ‘would you be prepared to examine me, then read some information I have and examine me again.’ My optician said, ‘Oh I love mysteries and its about time someone found out what is causing your problems.’ He examined me for the second time and said.. ‘Yes, the muscles that move your eyes on the left side of your face are weaker than the right—and weaken further with repetition. When you move your eyes left to right, right to left, there is a time lag on the left side. Easy to sort that out, just move your head and not your eyes. Also when I shine a bright light into your eyes the pupil goes small but takes much much longer to return to normal which is why you can’t see properly for a short time when you go from the light to the dark, till your pupils sort themselves out.’ He wrote me a comprehensive report for my GP.

I gave my GP the report – who months earlier doubted it was polio related – who said that she was impressed by my tenacity in searching for answers, and added, ‘I don’t think there would be much to gain from your returning to the Eye Department for further appointments unless things change’. [4 years of appointments and I find the answer on the Internet]

Remember not everything is Post Polio, but the fact that you had scattered nerve damage from the Polio virus means that it may impact on symptoms in areas not thought to have been previously affected.

A Summary of our Presentation.

‘Make sure the picture in your mind matches the picture in the Health Professionals’

Compiling the many and varied comments made to the Lincolnshire Post Polio Network— not just in the U.K. but from around the world—has highlighted the following problems.

1 . When the polio vaccine became ‘safe and effective’ 50 years ago this year the

numbers of polio cases reduced and subsequently so did the number of facts taught in

Medical Schools. Some Colleges do not even mention polio, others give just a few basic

facts, leaving many health professionals in a very awkward position when a Polio Survivor

turns up for an appointment not only knowing more about polio but having found out via the

Internet or the media that there are late effects following recovery and many years of stable

functioning. There are still hundreds and thousands of health professionals in the world that

are unaware that PPS exists, or have heard the term but have had little experience with the

condition. How many of the 20 million polio survivors in the world still do not know it

exists?

2. Manual Muscle Testing. This, as our readers know, is one of the biggest stumbling

blocks in obtaining a full and accurate assessment. Manual Muscle Testing was developed

in Britain over 50 years ago but there is a massive problem with validity and reliability.

Firstly there could be up to 70% weakness in a muscle before it is detected by this method,

secondly most testing is done a single time not picking up weakness that occurs at a later

repetition or longer sustained time, and thirdly it does not test pattern of movement. [My

medical for the Police in 1969 passed me fit, it did not pick up the fact that I could not run

or rise from a squatting position.]

Health professionals will tell you that they use this method, e.g. grip my hand, pull against me, push against my, looking for weakness. If no weakness is found on a single action test then often the tester moves on. If you are reporting weakness in a muscle and like so many of us nothing is found we end up doing the rounds of hospital departments, being tested the same way again and again and our symptoms go uncorroborated. The money

Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living

STRATEGIES FOR LIVING WELL St. Louis, Missouri, USA.

Reactor – Carol Vandenakker MD

Physical Medicine & Rehabilitation, University of California Davis Medical Center.

Speakers:

Mary Kinane, BA, PGCE – Chair

Hilary Hallam, FIST – Founder and Secretary

Denise Carlyle, BA, MA, PhD, LRAM – Treasurer

Lincolnshire Post-Polio Network – U.K. www.lincolnshirepostpolio.org.uk

being wasted and the frustration, stress and often unnecessary further deterioration that

occurs is unacceptable. [See chart bottom of page 22]

3. Another problem is being caused when a few facts or a few lines are taken from a

medical article that leaves out a critical piece of information. For example:-

∗ The results of this study of x number of polio survivors revealed y…

important studies but do the polio survivors you are seeing match the people

who were examined for this study?

∗ Muscles graded 5 can be exercised vigorously … but only after full

and thorough history taking and physical examination of a polio survivor by a

Polio and PPS knowledgeable health professional.

4. The diagnostic name given to you at the time of your polio related to the worst

affected area of your body. No name was given to the rest of your body. After test results

that showed you had been in contact with one of the three polio viruses a physical

examination would take place and reported as follows:-

∗ Paralysis in any part of your body then you had Paralytic Polio,

∗ Clinically evident weakness but no paralysis then Non Paralytic Polio.

∗ No clinical weakness evident and your diagnosis was Abortive Polio.

BUT you could have had

∗ up to 44% nerve damage with NO clinically evident weakness

∗ up to 59% nerve damage before paralysis was evident. [Two charts on back page]

What many health professionals are failing to consider is how much damage was caused to the rest of your body. How much damage occurred in the ‘good’ leg, or ‘good’ arm or even ‘good’ part of a limb? Did you have sub clinical damage in the bulbar area? Should all Polio Survivors who are reporting new symptoms, problems with functional decline be given a full physical assessment including Respiratory Testing? In my opinion YES, to pick up problems before they cause too much unnecessary deterioration.

5. The level of recovery is often not realised. Attend conferences and PPS meetings and

see how many Polio Survivors do NOT show easily visible external signs of atrophy, short

limbs, different size feet, even operations that fixed joints in various parts of the body. If

polio is taught then the pictures shown are likely to include an iron lung, a person with

obvious atrophy. However, many of us, maybe even 80% , until our bodies start showing the

signs of our new symptoms have been asked ’Are you sure you had Polio, do you have any

records to corroborate this?’ [See the two photos of the same person on the back page]

6. There are no tests that can say you have PPS? Diagnosis comes by exclusion of all

other conditions, and a full and through history taking, physical examination and tests

deemed necessary. We also strongly advocate that observation takes place of the changes in

daily function that we can demonstrate. If we were able to do an action five years ago one way and now have had to alter that way considerably there has to be a reason why. Self Assessment—which we will go into next will help you give this information to the health professional so you can ask, why has this happened?

7. The way we are asked and answer questions.. Polio Survivors are notorious for

not admitting that we cannot do something. If we are asked ‘Can you walk? And we will say

‘Yes’ when it could be swinging legs through using arm crutches. We ask health

Professionals to rephrase their questions to How do you do x?, and Polio Survivors try and

answer this way even if you have been asked Can you. Be honest and tell it like it really is,

get the help and advice you need as early as possible.

8. Lastly how you present your information. You need to consider the length of the

appointment and why are you seeing this health professional, and start with the most

obvious problem that you now have, then move to the next most obvious. Make other

appointments for the rest, don’t try and rush through all your problems.

So where do you start……..

You have been having problems of new pain, weakness, fatigue and functional decline for some time and at last have plucked up courage to go see a doctor. You do not know how he/ she are going to conduct this appointment although you know they are going to want your medical history and symptoms. It is difficult to keep all these facts in your head so you need to write them down. The health professional will most likely have a time plan and pattern for this type of appointment. So much for history taking, so much for examination, tests, recording their comments and giving you some information.

So how much information do you need to record? For your own use, you can record as much information as you like. Make up a ring bound file and include anything you think might be relevant to attending a medical appointment in the future. You can include your life history, family medical history, your medical history, work history, sporting or other achievements, test results, a few photographs, newspaper articles and medical articles. It is not a good idea to go to an appointment armed with huge files and bags of medical articles. Always take someone with you to your appointments to help record what is said, and if you really think it could help put the file in a bag and give it to the person with you in case you need to refer to a date, or test result.

Now put yourself in the position of the health professional you are going to see. What do you think he/she is going to ask you, and write down on your records. You need to look at the type of appointment and time allotted and pick the facts from your file that are relevant and can be discussed during the time allowed. You have your blank file open in front of you, what do you think are the facts that they are going to consider relevant and record? At some time in the future they may need to write a report on your condition, letter of referral, fill out a benefits form, etc. They will only need what is relevant to their specialism. Write/ type this out on a separate sheet double spaced and politely offer them and say ‘I have made a few notes so that I don’t forget things and have a copy for you if you would like it.’.

What other types of information can you give to them that will quickly show important points. Just a couple of items, again not a bag full. If you have not seen this health

professional before he/she will be seeing you as you are now and will have no idea of how you were five/ten/twenty years ago. Maybe you have a couple of photographs showing ability in the past you do not have now, or can make up a chart showing decline in distance walked over the last few years, etc. Chart shows the number of city blocks that Dr. Halstead has been able to walk over the last 27 years.

Decline in functional ability. In most cases decline in functional ability is a slow

process and often we do not ‘see’ it, or want to ‘see’ it. We just adapt the way we do the action and that becomes normal for us. However, this might not be ‘normal’ in the mind of the health professional you are seeing and it is important to ensure that the picture in their mind of how you do an action is the same as yours. When asked, ‘Can you get up a flight of stairs?’ It is so easy to say ‘Yes’, and smile and be proud of the fact that you can still do this, albeit on your bottom, backwards and one step at a time. The pertinent facts are, has there been a change in the way you do this action and if so when did this start and what are the changes? You might have always done it that way since polio, or you may have new weakness in an area that is causing you to do the action in a different way. From the list of actions overleaf write out on a separate sheet how you do the action now, and how you used to do it in the past. Then make short notes for the sheets and number them from 1 starting with the action that shows the most change. The action that shows the most change is your starting point. Walking a few steps across a doctor’s office can look fine, but if you can walk 20 paces that look ‘normal’ before your gait changes, your speed declines, and you have to stop and rest, then that is what you need to say and demonstrate if possible.

Try writing a report, letter back to your General Practitioner, letter of referral, to help you keep to important and relevant facts and give you some idea of what you hope the outcome of your appointment will be. It all helps to get the facts clear in your mind. Try and put out of your mind the problems with past appointments. Smile, be polite and ensure the health professional knows that you really do want to see an improvement in your condition and are ready to work with them on a plan to achieve this.

On pages 13 to 15 are 3 Objective Assessment Forms – Neck and Trunk, Shoulder to Wrist and Hip to Ankle – that I have worked on with a Senior Physiotherapist that could be used to assess you. The reasoning behind this is that the physical assessment should take into account the changes in function that you are reporting, that your actions are observed. If is also important that the position you were tested in is recorded so that another person can test you later to see if there is any further decline or even improvement following treatment.

Remember, you need to find out how long the appointment is, you need to be clear in your mind why you are going, what you want out of this appointment, and what are the most important points that you will have time to discuss. Set the scene and say ‘Good morning,

Dr. X, thank you for seeing me about my ……….. .

Progression of Symptoms – City blocks walked 1975 – 2002 Dr. Lauro S. Halstead – November 2002

1975 6789

1980

1234

1985 6789 1990

1234

1995 6789

2000 12

Years

8 6 4 2 0 10

How a Chart quickly shows decline in walking ability

FUNCTIONS TO CONSIDER
Two columns are given. Now and pre present problems. Add extra columns for all or some items if this shows progression of deterioration, e.g. stairs, two at a time, normal, one step at a time, + stop halfway
Before	How do you do this action NOW?
Posture
Gait
Walking without aids
Walking with aids
Walking carrying items
Standing without aids
Standing with aids
Going up and down stairs
Using stairs carrying items
Getting in/out of dining chair
Getting in/out of arm chair
Getting in/out of bed
Turning over in bed
Getting in/out of car
Getting up/down from floor
Working whilst sitting on floor
Using bath
Using shower
Washing hair
Shopping for food
Shopping for other items
Housework – dusting
Housework – vacuuming

Changing duvet cover/bed

Kitchen – stand/sit

Kitchen – use hands at sink

Kitchen – hands peeling veg

Kitchen – beating/cutting

Using desktop computer

Using laptop computer

Clapping action

General work in workshop

Sawing, sanding etc.

Gardening – heavy work

Gardening – planting/weeding

Decorating – wallpapering

Decorating – painting

Craft –

Sport –

Driving in town

Driving long distances

Driving – change to auto?

Other

Norm	Comment	NECK
Flexion	c to c
Extension	130
Left side flexion	L	45
Right side flexion	R
Left neck rotation	L	80
Right neck rotation	R
Kyphosis
Scoliosis
Flexion	70
Extension	+25
Chest expansion	varies
Equal
Cough
Sneeze
Use of abdominals
Standing Time
Lordosis
Extension	35 deg
Left side flexion	30
Right side flexion
Left rotation sit/stand	45
Right rotation sit/stand
Any spasm
Imbalance of movement
Notes.
Flexion	7cm off floor
OBJECTIVE ASSESSMENT – Date of Assessment ……………………………………Name …………………………….. D.o.B. ………………. Age ……. Page 1 of 3
Please notate exact starting position for measurements of joints to ensure repeatability, i.e. patient sitting, shoulder in 90 deg. abduction
THORACIC SPINE
N.B. C to C – Chin to Chest.
LUMBAR SPINE
N.B. REF – rubber end feel BEF – boney end feel.

Norm	Comment
L	0 – 165	Long Lever
R
Symmetry
L	Abduction	0 – 170
R
L	Extension	60
R
L	Horizontal flexion	0 – 140
R
L	Horizontal extension	0 – 50
R
L	Medial rotation	70
R
L	Lateral rotation	100
R
L	Flexion	0 – 145
R
L	Extension	full
R
Any blocking of movement	none
L	Supination	80
R
L	Pronation	75
R
L	Flexion	75
R
L	Extension	75
R
L	Ulnar Deviation	35
R
L	Radial Deviation	20
R
L	Finger Flexion	full
R
L	Opposition	full
R
L	Power Grip
R
L	Any deformities
R
Any functional problems
OBJECTIVE ASSESSMENT – Date of Assessment ……………………………………Name …………………………….. D.o.B. ………………. Age ……. Page 2 of 3
WRIST
SHOULDER
ELBOW

Norm	Comment	HIP
Flexion standing	L	120
lying	L
standing	R	120
lying	R
L	5 to 20	Extension
R
Any flexion deformity
L	40	Abduction
R
L	25	Adduction
R
L	45	Medial rotation
R
L	45	Lateral rotation
R
L	Flexion	135
R
L	Extension – active and passive
R
Any flexion deformity?
Any extensor lag?
L	15	Dorsi flexion
R
L	55	Plantar flexion
R
L	45	Pronation
R
L	Supination	45
R
L	Heel raises – can maintain or repeat
R
L	Ability to push off
R
OBJECTIVE ASSESSMENT – Date of Assessment ……………………………Name …………………………….………….. D.o.B. ……….….. Age …….. Page 3 of 3
Notes.
ANKLE
KNEE

The following is condensed from a full report to give you some idea of the facts that have now been revealed. NB most of these facts, especially with the upper body, have not been picked up by standard single action Manual Muscle Testing. NB upper body continually recorded as ‘power and tone normal.’

OBJECTIVE ASSESSMENT – Date of assessment—mid 2004.

Name 1.

D.o.B. Brief Outline of Patients Medical History.

Age

2. Brief Outline of Patients Work History.

3. Patients Physical Ability before current problems

4. Brief outline of the problems patient has had trying to find out what is wrong

with them, diagnosis, treatment, employment and benefit issues

5. POSTURE – (Whilst not wearing left leg KAFO and right leg AFO)

6. GAIT .

7. SUMMARY.

1. Neck movements all limited and need stretching.

2. Right shoulder medial rotation is limited along with forward flexion.

3. Supinators and shoulder abductors are very weak and lack sustainability.

See if any other ways to modify activities.

4. Chest expansion is very poor at 2.5cm.

5. Thoracic/lumbar spine extension severely limited. Needs stretching and

possibly mobilising.

6. Very tight calf muscles especially on the left which affects her balance.

Tight hamstrings, left in particular. Bilateral hip flexion contractures/

left, knee contracture possible due to shortened calf muscles.

7. Ankle movements are restricted due to bilateral tendon transplants as a

child, involving tendon transposition to allow some active dorsi flexion.

Investigate lower limb braces further.

FUNCTIONAL OBSERVATIONS.

Clapping – hands on knees to clap on knee. After 10 reps shoulder abduction no longer sustainable, elbow flexion sustainability on the left is affected.

Supination activities – i.e. scrambling an egg. Unable to sustain supination beyond 4 – 5 repeats, right worse than left. Elbow rotation reps about 12 – 15. Right worse than left.

Standing at a work surface – Leans propped against work surface, fixates thru her elbows due to reduced sustainability of shoulder abductors. In order to peel a carrot peels away from herself – using wobbly peeler – and pronators due to sustainability

problems in supinator, interossei and lumbricals.

Using both hands – has to lean against something to give trunkal stability, and allow short arm lever work due to poor sustainability of shoulder abductors. Arms angled down at 45 degrees – not possible sitting and arms at 90 degrees. Whole free arm movement are not possible. Muscle pain can be a problem if needs to repeat or sustain actions past her normal levels for each action. [e.g. this can be as little as 5 repeats or stand for more than 2 mins.]

Typing – now uses a hand and arm rest at main computer – but much more energy efficient to use laptop on lap on reclined chair with arms resting on chair arms. Left hand rests on front of laptop allowing fingers to be rested in optimum functional position to allow maximal use of finger extensor power available. Left arm is weaker, fixates thru elbows and shoulders.

Reaching forwards – can manage 3 reps before fatigue or muscle pain.

Hip and pelvic stability – has noted reduced significantly since diagnosis in Dec 1997.

Driving – Used to be advanced police driver using manual transmission. Unable to lift leg into car uses hand to lift. Unable to lift left leg onto clutch now has to drive automatic. Left leg was left the weakest following polio.

Getting out of a chair – Has to get to the very edge of the chair, moves weight fully forwards. Uses her hands to walk herself up to 90 degrees plus ad then uses her back extensors.

Getting out of a low car – lifts her legs out of the car, puts arms against the side of the car and ‘jumps’ arms up. Legs need to be at 90 degrees flexion before she is efficiently able to sit to stand.

Getting up from the floor – V shaped closing action. This is a method used since first contracting polio, but is now becoming harder to perform. Uses hamstrings and back extensors to achieve this manoeuvre rather than quadriceps.

Housekeeping – Vacuuming, dusting, ironing, washing up, hand washing, soon fatigues as involve shoulder abduction and forearm supination. Soon fatigues, for her is e.g. ironing only two items, vacuuming quarter of average sized lounge.

Patient also reports the following symptoms [headings only]

∗ Fasciculations and peripheral neuropathy—improved by getting legs up

in recliner chair at every opportunity.

∗ Weakness of eye movement muscles—turns head instead of moving eyes.

∗ Swallowing difficulties on occasion—needs further testing.

∗ Voice get hoarse after speaking for some time, has lowered in depth.

∗ Breathing – shallow and upper chest, needs investigation

∗ Sleep – snores badly, has to wake to higher level of consciousness to turn

over causing disturbed sleep.

Polio survivors were often left with visible, physical deficits to which they adjusted. And in spite of inconveniences created along the way by these physical shortcomings, they continue to live long, full, productive lives. It is the late effects of polio, the often-invisible deficits created by old polio, which is a conundrum today for both the medical community and those experiencing Post Polio Syndrome.

As I read and learn more and more about the difficulties associated with Post Polio Syndrome, I often wish there was easily attainable, in-depth information available on some topics I find of interest. It is more likely I will stumble upon information by chance, kind of like a treasure hunt that has serious implications if I don’t find the hidden treasure. And often, when I figure out the right questions to ask, a few kind doctors will fill in some of the blanks (thanks docs!) to form a more complete picture in my mind’s eye. And so it was with my interest in Creatine Kinase (CK) levels and how those levels affect my particular case of PPS.

Although I had probably seen the term dozens of times in the last few years, I first became truly aware of the usage of “CK level” while reading Postpolio Syndrome, by Dr. Julie K. Silver and Dr. Anne Gawne, in 2004. Of the eight references to Creatine Kinase in their book, confusion still abounded in my mind about how exactly it could be applied to Post Polio Syndrome. References ran the gamut from – the connection should be further studied – to the significance of some findings was unknown. But the twists and turns of CK kept swirling in my mind as I came across more and more information relating to Creatine Kinase levels in connection with Post Polio Syndrome and other neuro-muscular disorders and diseases.

I began this particular quest by first searching for a clear and concise definition of Creatine Kinase. I found the web an extremely valuable source of information, and in an article within the Dr. Joseph F. Smith Medical Library on the topic of “Creatine Kinase Testing,” I found the basis from which to begin my exploration of this subject. In my reading, I (at the very basic level) learned that, “Creatine Kinase (CK or CPK) is an enzyme (a type of protein), which is found in muscle and brain. Normally, very little CK is found circulating in the blood. Elevated levels indicate damage to either muscle or brain – possibly from a heart attack, muscle disease or stroke. There are three types, or isoforms, of CK:

∗ CK-I, or BB, is produced primarily by brain and smooth muscle.

∗ CK-II, or MB, is produced primarily by heart muscle.

∗ CK-III, or MM, is produced primarily by skeletal muscle.”

A logical next step to understanding this mystery was to determine what is considered a “normal” CK level. And it was at this point I began to realize exactly why there aren’t more definitive answers about CK and its use as a diagnostic tool! Analysis of CK levels is based on several factors; it is very individual to each person, so to make generalizations is difficult. In my research on problems associated with old polio in particular and reading CK levels to understand them, I found conflicting information such as: …findings suggest that muscle overuse is either not important or inadequately measured by CK, or these findings support the hypothesis that chronic muscle overuse may be a contributing factor…in

neuromuscular compromise.

Another challenge is the fact that analyzing how CK levels are read is also dependent upon how the lab, analyzing the results, reads the test. From what I was able to discern, gender, age, race, and activity level all play a part in determining normal CK levels. Needless to say, there are no “norms”, but taking the above into consideration, the following information is what I found to be a general rule of thumb: In females, total CK should be 10-70 units per liter (U/L) with the midrange around 59 units per liter, and in males, total CK should be 17-148 U/L, with mid-range around 79 units per liter.

With my curiosity piqued, in August 2004, I first approached my family practice doctor about testing my Creatine Kinase level. My plan was to test my level at various stages of activities of daily living and then see how adding a low impact exercise regimen to that would affect my personal, muscle situation. My objective was two-fold: 1) I wanted to know if my Creatine Kinase level rises when I get the flu-like symptoms I seem to experience with fatigue, late in the day, or sometimes with seemingly simple physical exertion, like shopping or standing too long in line at the store, and 2) If my CK level doesn’t rise any further than my “normal,” would it be possible for me to engage in a modified exercise program without doing further muscle irritation or damage? I felt I could stand the additional muscle pain that accompanied more exercise if it wasn’t causing further harm to my muscles. Dr. Lamantia, my wonderful family practice physician, agreed this project had merit in my case, so we set a plan in motion that would, as it turned out, cover the better part of 6 months.

My first test was completed in September 2004, following right-hand, carpal tunnel surgery. Since my right hand is my dominant hand, I thought testing at a time when I was doing absolutely nothing might be a good baseline against which to compare future tests. However, as my doctor later explained, doing nothing, when your degree of activity usually includes doing something, can influence the test findings as well. She said a rise in CK might not be unusual at this particular time since being sedentary often leads to a mildly elevated CK level. Keeping that in mind, when my first test results were returned, my CK level was 162 U/L. It was definitely higher than the female norm of 59 U/L, but as I soon also learned, a mildly elevated CK (in the grand scope of things 162 U/L is considered mildly elevated) is also consistent with post-polio. So, another twist presented itself!

As a natural part of the learning process, several questions followed my first CK test results, which were reported as a CK total. Since there are three types of CK, I was puzzled about how the test is read as a total. My questions were as follows:

∗ Wouldn’t it have been more effective to know the breakdown between CK-1,

CK-II and CK-III instead of just reporting the total back to me?

∗ Since an elevation of CK-III indicates skeletal muscle damage, wouldn’t

this be the information I am really seeking?

∗ As I learned, CK-III normally makes up the vast majority (~95%) of CK in the blood; so, unless one has reason to suspect that he/she has recently had a heart attack or stroke, it’s reasonably safe to assume that an elevated CK consists mainly of CK-III.

Based on that information, knowing that my brain and heart were not of concern, I realized

an understanding of CK III level was the only one still needing clarification to bring straightforward answers to my confusion and focus to my investigation.

The next CK was rechecked just as I returned to a normal, quiet routine in November 2004, and my level was recorded at 153 U/L. I had been approved to return to normal activities, but my hand was tender, so I was still babying it, and my always rather quiet activities were still modified. Since this was lower than my first test, I could see that my doctor was probably right on target about your CK being elevated with inactivity, but it appeared as though this range might be “normal CK” in my case since the two totals were fairly similar.

Based on these findings, I speculated: 1) My normal CK level is possibly around 150 U/L. 2) Might it be possible to add some type of low impact exercise without raising my CK level? and 3) Could I figure out a correlation between my CK levels and my degree of discomfort as I pursued some type of exercise plan? So I set out to devise a program that might answer some of these questions with test #3.

I have felt, based on my change in pain level, there must be a measurable way of gauging the discomfort that mounts during my day. When I get to the end of my day, usually from just “normal” activities, like stopping by school to turn in a project I worked on at home, a trip to Costco to drop off film or a stop at Wal-Mart to buy material, by late afternoon I often feel ill; you can’t pinpoint the source. It is like my body is at the muscle-ache stage of having the flu – in my case my muscles feel tight, which from 4 years of experience I know is pain registering in an odd way. When I get to that degree of discomfort, I know I am at the stopping point and past the mid-line of what daily activities are acceptable for me.

Under the watchful eye of Dr. Lamantia, at the beginning of the year I added a Parkinson’s disease exercise class that is given at the YMCA under the direction of specially trained Parkinson’s instructors. I wanted to know: If I worked my muscles doing minimal exercise, how would 1 hour of very low impact exercises, meant for another group of neuro-muscular patients, 2 days a week (on Monday and Friday), affect my CK level? How could I, as a PPS patient, fit into that group?

I knew from the start, each day I attended the class, I was probably in muscle trouble. I felt muscle pain and flu-like symptoms by late afternoon, and I pinned down the fact that it was uncomfortable sleeping each night I exercised with this group, so the effects of pain continued to climb 18 or more hours after the class. Anytime I have a particularly difficult day, I often awaken a few times during the night with painfully tight muscles in spite of my regular dose of Neurontin at bedtime. To explain it further, it is like I just can’t get comfortable, no matter how hard I try to relax. I, sadly, realized nights were always painful on the days I took my exercise class.

The results of working my muscles on the minor exercise days were sobering. My doctor ran a CK test again in March 2005, and my results showed that on the day the blood sample was drawn, my CK level had risen from 153U/L to nearly double that, 299U/L. I timed the scheduling of the blood test to reflect how I felt physically that day; I waited until the flulike feeling began, so at that moment, I could actually feel the muscle changes. And based on the change in my CK level from the 150 U/L range to the 300 U/L range, I knew my latest formal exercise plan wasn’t going to work. It was painfully evident continuing with this program was counter productive to what I had hoped to accomplish, and it could, in

fact, be detrimental to my overall, muscle health. But the results were important to know because I think I now have bounds to proceed with activities which might be acceptable for me, and to understand a little better those which are not.

The biggest advantage from this self-study is: I believe I can now tell when my CK rises, and I now have an idea of when I am within the 300 range just doing everyday tasks. Obviously the objective for me, since I am experiencing the symptoms of PPS, might be to keep my CK level as low as possible. Since I feel ill when my CK level is high, I believe I now have a guide with which to track myself. Whether or not I will be able to follow my own instructions is another issue all together. As I have learned from my research, you don’t feel the ill effects for hours and possibly days after you have overdone. That is a stumbling block for certain…at least for me! And since I don’t like to fill my day just sitting and crocheting, it can potentially be a problem for me from this point forward, just as it has been in the past.

Do I pay for overdoing? Yes! Is it like the average polio survivor pays for overdoing? Maybe. Some people with PPS experience pain, and others do not. Is the pain related to a rise in CK level? In my case, I believe it is. When I hurt is actual muscle damage being done? I can only surmise the answer to that question is yes.

As a wise doctor recently told me, “even healthy people show an increase in blood CK levels after exercise…….can easily rise to 300 or more.” However, he added, “ …even if their CK goes up as high as yours…….maybe you (and I) can ‘afford’ it less…….” I would venture a guess that since normal exercise doesn’t make the average person feel physically ill, as it does me, the damage (or perhaps the degree of inflammation being caused) is greater for me than it would be for her/him.

In the process of looking for answers, I really just created an entire new realm of unanswerable questions. Does the feeling of pain or flu-like symptoms mean I am just feeling the effects of inflammation or, in time, will it translate to real muscle loss? On a normal day at a CK of 150(+)U/L, am I taxing my muscles at 2½ times that of the normal woman with a CK of around 59U/L? Would it be useful to do a study of CK levels from a PPS group experiencing symptoms – side by side with those who had polio but are not experiencing PPS symptoms – and that of a control group within the same age category who did not have polio? Would all PPS patients benefit from having their CK tested? Like everyone else with PPS, I am caught in the crosshairs of that discussion, but judging by my recent experience, I would have to say, “Yes!”

To take this idea a step further, should I then logically ask the questions:

∗ For polio survivors not experiencing pain, could they be unknowingly doing muscle

damage each and every day?

∗ And, could testing CK levels on a regular basis, perhaps every 6 months, reveal

whether or not damage was occurring?

∗ If routine CK levels could be used to trace muscle damage, then is it possible that

the presence or absence of pain could be referenced as a reliable means of setting

our activity levels?

I am, as my family practice doctor will attest, always on the lookout for a “plan” that works

6 5 4 3 2 1 0

Left Leg

Right Leg

Straight Leg Raise Repeats

6 5 4 3 2 1 0

Left Arm

Right Arm

Arms – Lift Item and Sustain

N.B. My reported functional decline was not corroborated by single action Manual Muscle Testing.

for me! Although this experience has taught me I can’t join an organized exercise program, I intend to keep searching until I find an exercise plan that complements my situation. There is a balance between doing too much and doing too little; striking that balance is important for overall fitness and improved quality of life.

I realize that results from a one-person study can’t be generalized for the entire PPS population, but I am convinced knowing one’s CK level could be important for polio survivors whether or not they are experiencing PPS symptoms. If a person with PPS knows their CK level, they may have tangible proof of how to measure what they can do…and what they can’t do. It is one thing for someone to tell you, “If you use it, you’ll lose it!” But if you can visibly see the implications of overuse and muscle abuse in solid numbers, it is another level of understanding altogether.

***SPECIAL NOTE***

One final comment to the Creatine Kinase puzzle came at the suggestion of a wise doctor from whom I sought advice about my interest in CK related issues. He pointed out that it should be noted “…people with (or at risk for) PPS should be especially careful when taking drugs which are known to have the side-effect of damaging skeletal muscle — for example, the ‘statin’ drugs.” He felt strongly that anyone with PPS who is on a statin should have their CK monitored on a regular basis.

Please contact me with any comments or observations. We learn so much more by sharing information. If you are not on the Internet then please send me a letter via the Lincolnshire Post Polio Network main address.

Gladys Swensrud, email… swensrud@pacbell.net

Slide from PHI Conference—See page 7, item 2. When Manual Muscle Testing is done a single time or less repeats or length of sustaining action than where you are reporting weakness then it will NOT corroborate what you are saying. For instance if you are told that your right arm is strong [Chart on right] and you are able to lift a jug of iced water for four seconds but not sustain that or pour the water out without bringing your elbow into your side and using your other arm to support the left, then you need to ask to demonstrate this.

Waiting for an elevator at our hospital, I stood next to a maintenance man holding a bicycle pump. Noticing my curious stares, he looked at me and remarked with a grin, “It’s the new Medicare oxygen program.”. ___

A woman was taking her time browsing through everything at a neighbor’s large yard sale, and said to her, “My husband is going to be very angry I stopped at a yard sale.”

“I’m sure Charley will understand when you tell him about all the bargains you found,” her friend replied.

“Normally, yes,” she said. “But he just broke his leg brace, and he’s waiting for me to take it to the brace shop to have it fixed.

___

“Wong Mee and his wife, Virginia, were married for 50 years, but finally health problems got the best of them,

Wong Mee in particular. He suffered from Alzheimer’s and the polio he’d had in his youth that left his legs in a crippled condition seemed to be making him even weaker.

One day he wandered from home, and his wife was very worried. When the police found him, he was only three blocks from home, but lost, confused, and unable to walk.

They had to ‘carry Mee back to old Virginny.’

___

If there’s a competition for Worst Waiter of the Year I’ve got a good candidate. He was working at my aunt’s favorite restaurant when we took her there for her 60th birthday.

It started right away. We asked him to seat

us where my nephew’s electric wheelchair would easily fit. The waiter then marched off to a booth in the rear. Even he had to turn sideways to get between some of the already seated patrons at the over-packed tables.

Finally we got seated and then this guy messed up every order! She asked for pork. He brought beef. We requested beans. We got corn. And so on.

At the end of our meal, he asked, “Would anyone like dessert?”

We had a good laugh when my aunt answers, “What do I have to order to get a piece of cheesecake?”

___

“I must be getting old. I’m starting to talk to myself.”

“We all do, Ralph.” “Well, I find it annoying.” “Why?”

“Because I’m also losing my hearing and I have to repeat everything.”

___

What is the laziest part of a powerchair? The wheels – they’re always tired.

When the guy who bowled from a wheelchair was filmed for an ad, he became a roll model.

There aren’t nearly enough crutches in the world for all the lame excuses why your homework’s not done!

The spinal column is a long bunch of bones. The head sits on the top, and you sit on the bottom.

Crip Humor

By and For the Severely Euphemized Please submit jokes about and for PWDs [People with Disabilities] eMail marsha1945@sbcglobal.net

KEY OMMISIONS

How much nerve damage occurred in the Upper Body?

Was the bulbar area affected to any degree?

95% of the body was affected.

Lower body

Waist down paralysis 60% plus nerve damage.

Diagnosis: Paralytic Polio

Upper body

No medically recorded weakness

Diagnosis not given

A diagnosis might be given as follows:

3 – A diagnosis was made after virus test +polio and clinical observation of the weakest part of the body

Bodian D and Sharrard WJW found levels of nerve damage on autopsy and compared them with the results of the physical examinations before death

Found no clinical weakness evident below 44% nerve damage

Weakness became clinically evident at 45% nerve damage

Paralysis was clinically evident from 60% nerve damage

44%59%

4 – Extent of recovery from Polio is often not recognised

This patient presents herself at your office In 2003

Would you expect her to produce this photograph of herself taken in 1995?

Page 24

Linc Pin Volume 5 Issue 4 Read More »

Linc Pin Volume 5 Issue 3

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 3 — April 2005

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

Happy 100th Birthday

30th March 2005

Bessie “Gertrude” Brooks of Vicksburg, Mississippi, U.S.A.

97 years a Polio Survivor!

LONE RANGERS FIRST KISS

As readers of the Herald American adventure strip know very well, the Lone Ranger, masked avenger of the plains., doesn’t go round kissing girls. He is far too busy foiling rustlers for that sort of thing. But today at Mercy Hospital star of International Amphitheatre rodeo made an exception. He couldn’t resist a smooth with Ellen.

Ellen—Our Texas One Arm Bandit

SHANG-HAI MOTOBILITY!

After Xian, a short flight to Shanghai, a modern bustling city with modern skyscrapers on the one hand, and tiny shacks for some of the residents on the other.

Alan Russell visits China in TRAVELS WITH A WHEELCHAIR—Page 21

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

CONTENTS.

2 Contents and Information 3—Editorial by Hilary Hallam

4 Message from the Chair Mary Kinane

5 Treasurers Thoughts from Denise Carlyle

6 Bessie ‘Gertrude’ Brooks by Jann Hartman

6 – 7 Center for Enablement by Robin Butler

8 Wheelchair Upgrade, Assessment.. By Anne Wood

9 PPS and Babysitting by Sue Kearnes

10 Freeze that problem out of your life by Ellen Riddle 11—Funnies.

12—15 Polio Particles 19 from Dr. Mary Westbrook.

16—17 Physician sees ways to reverse failure of US healthcare system

18	Yellow Card Reporting by Di Newman
19—20 Psychological Issues and Family Relations in PostPolio Survivors 21—24 Travels with a Wheelchair by Alan Russell	23 – EU Form III

WE WOULD LIKE TO THANK THE FOLLOWING

FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Ewan Peddie, Jenny Rayner, Sylvia Fortune, XX Lightfoot, Jennie Paulger,

Mrs. B. Bowles, L Wood, W.K.Turpin, Michael Fisher, Kay Preece,

Yvonne Grosse, Yvonne Webb, Raymond Owen, Angela Johnson,

Bob Price, Helga Dale, Sherrye Parr,

Sheila Dunnett, Denise Carlyle, Hilary Hallam, Mary Kinane, Robin Butler and Di Newman.

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – June 2005

Articles for publication 15th May by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Internet Services Administration Chris Salter – netadmin@lincolnshirepostpolio.org.uk

This is Issue Number 51 and I would like to thank Ellen for stepping in and providing the content of the last newsletter. Ellen prepared more on similar lines and we will be using that in the months to come. Thank you to other PPS friends and the rest of the Committee and Operations Team who have been there for me whilst we have coped with the side effects from drugs/and side effects from the drugs for those side effects!!! given to Richard. I am pleased to report that he is now off these drugs and on the mend.

Remember that polio survivors often tolerate much lower doses of many drugs and Richard and I are now taking the advice given to the members of the Parkinson’s Support Group in Sarasota by Dr. J Terry Petrella, Neurologist.

Non-emergency. ∗ Never start more than one drug at a time. ∗ Always check with your Pharmacist before taking any new drug. If you are taking any other drugs or vitamins that are not on his computer then give him/ her this information. ∗ Discuss with the prescriber your starting on a quarter of the lowest dose and increase schedule if you do not get any side effects from the drug or detrimental change in your condition. ∗ Likewise if told to stop taking a drug discuss a reducing schedule rather than stopping it immediately—unless there is a reason for this.

Emergency ∗ Carry copies of a CARD; detailing your medical conditions, drugs and vitamin schedules, allergies, intolerances, past reactions and contact information for all your health providers, with you. ∗ If you or someone who is with you are unsure about treatment being offered then be polite but say so and why and ask for more information.

REMINDER

Ninth International Conference on Post Polio Health and Ventilator Assisted Living: Strategies for Living Well Saint Louis, Missouri, USA. June 2nd, 3rd and 4th 2005

HOW SELF ASSESSMENT CAN HELP YOU IN OBTAINING BETTER CARE FROM HEALTH PROFESSIONALS

Hilary Hallam

Denise Carlyle, BA, MA, PhD, LRAM

Mary Kinane, BA, PGCE

Lincolnshire Post-Polio Network, Lincolnshire,

Jann Hartman is a Life Member and was a speaker at an AGM a few years ago.

EATING BETTER FOR BETTER HEALTH WITH YOUR FAMILY AND FRIENDS

and

SCOOTERS AND POWER CHAIRS The Care and Feeding of a Scooter or Power Chair

John and Jann Hartman – Baltimore, Maryland

Members Phyllis Hartke and Stella Cade with three colleagues from the San Francisco Bay Area PPS Group are attending. Anyone else attending please let us know as there are often SIX options to chose from. We would like to report back on as much of the Conference as we can. A few of the other subjects are:-

∗ Anaesthesia precautions for people with

neurological conditions.

∗ Integrative medicine approach to Post-Polio

Syndrome Management in Practice.

∗ Assistance from Allied Heath Professionals:-

∗ Falling: Fear, Risks, and Practical Strategies

∗ What OT’s and PT’s can (and can’t) do for

Polio Survivors.

∗ The Right Ventilation at the Right Time

∗ Analyzing your gait: The roles of exercise,

bracing or surgery.

∗ Research1: What is being done? What

needs to be done?

∗ Solutions for overuse and disuse weakness

∗ Analyzing Your Sleep. Is it Apnea,

Hypoventilation.. Or Both.. Or Something

Else?

∗ Spinal Bracing & New Technology in lower

extremity orthotics.

∗ Exercise—Part 1, A Debate about the

Debate and Part II, What Steps to Take.

More info:-www.post-polio.org/conf9th/ prog.html

“Hello everyone,

Welcome to edition no 51. We hope the collection of snippets from former articles printed in the last newsletter was helpful and informative. I certainly found it to be so, and thank Ellen Riddle again for her unique contribution to the LincPIN.

We continue to seek positive solutions to keeping the organisation afloat and addressing issues relevant to our members. Our able Treasurer Denise Carlyle is addressing you all with important questions regarding membership which will determine the direction of the newsletter in the future. I urge you to respond in any way you can to this questionnaire and send it back to us so that we have an idea of what our members really want.

This month (April) sees the beginning of Mental Health Week (27th March – April 2nd) and MIND, being England & Wales’ biggest mental health charity, is sponsoring a series of events and web-based publications of interest to all who have concerns around good mental health. This is an area which we don’t always associate directly with being polio survivors, but were we to monitor anecdotal evidence more closely, we might find that a substantial proportion of polio survivors have had dealings with the mental health system in one way or another. The use of anti-depressant drugs is one example of the PPS’ers quest for solutions to the manifold problems experienced as a polio survivor in today’s world. We take the view that individuals are best suited to make informed decisions around managing PPS and associated symptoms (assuming good information is available) and we DO NOT make any judgements about those decisions. Unfortunately, all too often users of anti-depressant prescription medicines do not have the full choice to exercise decision-making in this area, and anti-depressant drugs can be over-prescribed for our group. We encourage our readers to read the article and to visit the websites quoted at the end.

It is with sadness that we have to tell you of the death of member, Gerald Perkin of Surrey. Our condolences to his family and friends.

We wish all our readers and their friends and families good mental health and continue in our endeavours to provide up-to-date and thought-provoking articles on topics relevant to polio survivors.

Best wishes

Mary Kinane. Chair mary.kinane@lincolnshirepostpolio.org.uk

Your support.

Your generosity continues. In the first six months of this financial year, donations came to over £800. Over 65 of our members have now completed

Gift Aid Declarations. Once again Jenni Paulger will complete the necessary forms to reclaim tax through the Inland Revenue.

Gift Aid provides a great opportunity for all our members to increase the value of their donations to LincsPPN. The only people who should not return a form are those who pay no tax, or always give through a scheme, such as CAF, where tax has already been reclaimed. If you give £10, covered by a declaration, the taxman will add £2.80, making your gift worth £12.80. If you have not already done so, please fill in a form. Completing a form is not a promise to give to LPPN, but it allows us to increase the value of anything you do give us in the future.

Fundraising.

We were unsuccessful in our bid for Section 64 funding for 2005 despite the many hours it took to compile the application. We will continue to pursue alternative options. If you would like to assist us in future funding bids, have any suggestions of sources of funding, or could offer a few hours a month, we would welcome your help.

Jenni Paulger.

Our previous treasurer Jenni Paulger will soon be off to live in sunnier climes and will no longer be able to continue in her role as independent examiner of our accounts after the summer of 2005. We are very grateful to her and wish to thank her for all her hard work over the past few years. We wish her well in her new life.

This means we are seeking someone to help with the independent examining of the annual accounts. If anyone out there has accounting qualifications and would like to know further what this task entails, I would be glad to hear from them.

I would welcome any suggestions/comments you might like to make. You can contact me via email:

denise.carlyle@lincolnshirepostpolio.org.uk Denise Carlyle.

Front page story—Happy 100th Birthday

Bessie “Gertrude” Brooks of Vicksburg, Mississippi, USA, just celebrated her 100th birthday. Hitting the centenarian mark is quite a feat for anyone, but even more so for a survivor of Polio (once called Infantile Paralysis). Bessie, who was born March 30, 1905, got polio when she was 3 years old. She married, and went on to have 7 children (all by natural childbirth according to her grand-daughter, Karen in California). Unfortunately, her husband died when the children were still young, so she raised them by herself. Karen’s mother and her Aunt Vi have been the primary caretakers for this wonderful woman. Many others visit and take good care of their Mamaw, as they lovingly call their grandmother.

As far as anyone can discover, Bessie, is the oldest living Polio survivor. There was a report of a Mr. Remaley from Pennsylvania, who was born in 1904. Even if he is still among us, Bessie could still be the oldest woman who survived Poliomyelitis. That is quite an accomplishment! I’m looking forward to the next year when Bessie will celebrate 101 years. As one doctor from South Africa said in an email message to Bessie: “Happy Birthday, Bessie! May you have as many more birthdays as you desire.”

Written by Life Member Jann Hartman, Baltimore, MD, USA—arojann@yahoo.com Polio, 1953 and living with PPS since about 1985

In October 2002, after talking to people at the LincsPPN AGM, I asked my doctor to make an appointment for me at the Centre for Enablement at the Nuffield Hospital in Oxford. He had never heard of it but being a forward thinking man he agreed to write to them. Even the name gave me a boost. ENABLEMENT not DISABLEMENT.

The appointment came through for November 2002 for me to see a Professor Wade. It’s a reasonable journey from where we live in Kent to Oxford and we arrived early. As soon as we walked through the doors we received our first shock. No dinghy waiting room with people rushing about making you feel as though you shouldn’t be there, no awkward steps and doors to negotiate and no queue to see the receptionist. Were we really in a clinic? There was a wide hall with plenty of room and lots of comfortable but easy to get out of chairs, all door handles and light switches were set at a sensible height for wheelchair users; even the receptionist’s desk was quite accessible.

I gave my name and the first thing they asked was whether we would like tea or coffee, milk and sugar. We couldn’t believe our ears. Had we wandered into the foyer of some expensive hotel by mistake? No. This was definitely the clinic. We hadn’t even finished our tea when a man walking past asked if I was Robin. He was Professor Wade the man I had come to see. Complete with cups of tea we went into his office and he went through my Polio history.

I was having trouble with my feet becoming numb if I stood for any length of time but after an examination Prof Wade was of the opinion that this was not caused by

my Polio at all but by the narrowing of the canal in my spine. He told me there was an operation I could have to correct this or a drug called Neurontin I could try. We came home very pleased with our progress and waited for our next appointment to come through.

Unfortunately the Neurontin did not work with me and I had some very unpleasant side affects but that is another story.

Our second appointment came through for March 2003. We knew what to expect this time, we thought. The same format. Welcome by the receptionist and cups of tea all round then we were whisked off upstairs to an office. My wife couldn’t understand why the notice on the door said Speech Therapist. I don’t have trouble with my speech. I joked and asked if they were going to try and teach me French. A little confusion ensued but it ended up with us all having a laugh. The therapist had collected the wrong patient from the reception. She said she thought my speech had improved a lot. More like a miracle.

We saw Jan Keating the Occupational Therapist who asked a lot of questions about how I managed at home. As I cannot lift my arms above waist height without supporting one arm with the other this makes eating very tiring. Two boiled eggs can wear me out. A wheeled glide-about chair with an attachment to support the arm was tried out and seemed successful as was the neck cushion that could be used in many ways especially in conjunction with the lap tray to support a book.

I was then passed on to the wheelchair department where I was able to try out various scooters for the first time. Since then we have purchased a scooter that we are able to fit into the car and it has proved invaluable. There was a room where I was given advice on computers and even a lady who advised us on gardening tools. Nothing was too much trouble. Whatever problem I asked about there was some-one who could come up with a suggestion.

When we returned to the reception there was the chair, arm support, neck cushion and lap tray all waiting to be loaded into the car. We couldn’t believe our eyes. After years of having to fight for every little thing the NHS was showering us with equipment. My wife had been carefully making drawings of the cushion and the tray so that she could make something similar and we were going to inquire where we could get the chair but there it all was. All provided.

Since then we have had a home visit from Jan Keating to make sure that everything was working OK and to iron out any other problems we might be having. She even came up with an idea to make fastening the waist band of my trousers a bit easier. Sadly she has now left the department but the rest of the team are still there providing their excellent service.

Nuffield Orthopaedic Centre, NHS Trust,

Posture, Independence and Mobility Service, Oxford Centre for Enablement, Oxford, OX3 7LD. Telephone: 01865 227600

Robin Butler – Membership Secretary. membership@lincolnshirepostpolio.org.uk

I needed to upgrade my powerchair from a Phoenix Invacare to one which would lift me up to reach high shelves, and also tilt-in-space to relieve pressure. I called my local wheelchair supplier and he brought a couple of models to my house to try out. I had to immediately discount the one which also fully reclined as it was much too big and heavy to hoist into my car. The other one was the Invacare Spectra Plus. I gave it a little run up and down the road and it felt comfortable. It had all the bells and whistles I needed, but I was reluctant to part with a lot of money without having more choice. So I thanked the salesman and said I would think about it.

I had chosen my original chair after a full assessment at the Queen Elizabeth Banstead Mobility Centre, Damson Way, Orchard Hill, Queen Mary’s Avenue, Carshalton, Surrey M5 4NR (Tel: 020 8770 1151, Fax: 020 8770 1211).

In view of the several thousand pounds I would be spending I considered that another £75 was worth it for a second assessment. To the delight of my supplier, the assessor and I agreed that this particular model was indeed the right choice for me.

Because I needed the chair urgently, my supplier phoned the centre to get the specification rather than waiting several weeks for the report to come through, and he came to me the following week for another trial with the chair. We spent a long time getting the exact requirements and he will also fit the necessary brackets so that my hoist will lift it into my Renault Kangoo. I hope to take delivery in a week or so, and it’s costing £4,600. By the way, he advised against fitting front and rear lights, as did the assessor, because they are expensive, easily broken and a good torch or lamp on my lap would do the job just as well. I don’t intend using the wheelchair on the road or at night unless absolutely essential.

By the way, I am delighted with my new Kangoo – it is automatic, has power steering, and has double doors at the back so that I can open it easily. However, it had to be ordered specially from France as no-one in this country stocks this model, only the hatchback version which would be impossible for me to open.

I can thoroughly recommend my mobility firm to anyone who lives near them – they are TechMobililty (Sussex), Unit 4, Crosspost Industrial Park, Bolney, West Sussex RH17 5QU, Tel 01444 882233 sales@techmobility.info They are most friendly and helpful, and their Maxi-hoist is brilliant. They supplied and fitted armrests which have made such a difference to my comfort now that my arms are losing strength. They also fitted a reversing aid for me as I find it difficult to squint out of the back window now, and the wheelchair partly block the view anyway.

Member Anne Wood Anne <poglet@beeb.net>

For the past 16 months I’ve been babysitting my grand daughter, who was one on Dec 24, 2004 and my grandson, who was born Dec 22, 2004… Whewwww, I hear you say. I thought maybe we could swap tips on how we manage this.

I started early on teaching Katie to do small things for me to save my energy. She began walking at 10½ months. I started out by making a game of putting her toys away and now she does it all on her own just by my asking. She also will throw the little fella’s diaper in the trash, pick up his pacifier and give it to him and put his bottle back in his mouth if it should slip out. She’s started bouncing him very gently in his bouncer seat and getting me his diapers, powder, and baby wipes. She loves to help her Grammy.

It took some doing but I now have them on a schedule where they both nap at the same time, her naps consist of 3 to 3½ hours and his are approximately 2½ hours in duration. This allows Grammy to nap also and re-energize. I keep all their items within my or Katie’s reach so as to save much energy during the day.

I have a step stool with three steps on it and only have to hold Katie’s hand and she can get in and out of her crib on her own for naps. She has a baby doll she just loves and will go get her baby and go to the bedroom door when she is ready to nap on her own and actually gets all excited about nap time. Stomps her little feet and laughs, which is something I’ve never seen before and I’ve raised 4 youngins. I started out by telling her to get her baby and she’d look till she found her.

I’ve also taught her to go up and down steps on her own so I don’t have to help her when going outside to play. Am in the process of having a fence put up attached to the porch so she can push the storm door open and go outside and come back in when she wants to. She just loves being outside. Most of her drinks and her lunch are on the lower shelf of the fridge and she gets them by herself and crawls into her high chair, (again have a small step stool there) leaving me only to have to put the tray on it. She also puts her own bib on as it’s one that pulls over her head.

She has been a very easy child to deal with as we say “Yeah, Katie” and clap and get all excited when she does these things. Making a game of daily activities has made my life much easier, and she wants to do things.

As for her little brother, when watching a small baby one of those battery operated swings is a God send. Their Mom puts him in it in the morning and it is only 2 ft from the floor, with the tray lifting up it’s very easy to put him on the floor and to re position him back in it. Again he’s an exceptionally happy baby, as she’s always been. And since he’s only 3 months he sleeps most of the time, so far.

Guess the best advice I can give anyone with PPS caring for small children is to look at every aspect of each thing needing doing separately and to always utilize compensatory techniques to preserve energy, just as we do for ourselves, but in easier steps for our grand babies.

Member Sue Kearnes, Pennsylvania SEKEARNES@aol.com

From the Texas one armed bandit.. Member Ellen Riddle Elmari@lonellen.com

It happens to all of us. One thing goes wrong, then another and along with dealing with the challenges of PPS we quickly reach the boiling point. What can be even more frustrating is our ability to speak up and handle things in a very positive, productive way seems to be leaving us when we seem to need it most.

As anger and frustration builds up within us it affects not only our mood, but now can increase our already increasing fatigue levels, rob of us saved energy tokens, and snowball into other unwanted problems.

Getting so upset and staying so is fast becoming a thing to be avoided.. it falls under avoiding stress which will pull us downward with our pps problems.

So it is that I have dusted off a very effective symbolic way to get rid of these feelings that simply have lost any positive results they may have once provided.

When someone (from a near by person to one of those so very irritating bureaucratic pencil pushers making decisions that affect either my life or that of someone I care deeply about); an event (something I have no control over and feel helplessly caught up in), or just a culmination of small things growing into an mountain I once again take steps to freeze them out of my life.

Its really quite simple to do and surprisingly effective. I take a small piece of paper and write down the name, event, or group that is causing me so much turmoil and frustration.

I fold this up to fit into a small medicine vial. I fill this with water and place it into my freezer. As I do the last step I tell the person, event, group, whatever, that I’ve had it and they are now going to be frozen out of my life. As I slam the door shut (sometimes when my emotions are high enough) I say it out loud….. so and so you are now frozen out of my life.. and then I let the freezer worry about all of it.

If the person or problem persists to be bothersome it may take two or three freezings, but trust me eventually it does work!

It works in that once I do the above I am able to let go of the wasted emotions I’ve been investing in the person or problem. Sometimes this clears the way for a real solution to pop forward, other times it simply helps me accept the part of the Serenity prayer that is the most difficult.. accepting the things I can’t change. And, magically at other times within a very short time of freezing it out of my life things change.. the person is no longer irritating, the problem will literally solve itself, the mountain sinks back into the sea. Once again I can sit back and enjoy the sea that is now so deliciously calm.

You could always add a little fruit juice or flavouring and sell them as popsicles

A blind man, deaf man and a lame man went on a pilgrimage to a healing spring.

The blind man washed his eyes with water from the spring and exclaimed “I can see! I can see!”

The deaf man washed his ears with the spring water and exclaimed

“I can hear! I can hear!’

The lame man drove his wheelchair into the water and out the other side, yelling “I got new tires!”

A paraplegic man who was having some problems with his bowel program went to his doctor for some help. His doc told him that he had to drink warm water with Epsom salts one hour before breakfast. At the end of a week he returned and the doctor asked if he was feeling better.

The man said that he actually felt worse.

“Did you drink warm salt water an hour before breakfast each day?” the doctor asked.

“No,” replied the man sombrely, letting out a sigh. “I could only manage about 15 minutes!”

There’s a deaf guy who became a scuba diving geologist. He works with two deaf friends and they get a lot done at their dive sites as they can communicate easily under water with sign language. He has made it his business to measure the relative sizes of the rises, drops, cavities and undulations of coral formations. Of course this can only be done in the summer months so he takes the winters off to avoid the frigid air.

You may tag him as a frost-free reef ridge rater.

Sara was having trouble with her power chair. She called her tech, Old Charlie. Old Charlie had been a wheelchair repairman for 35 years and was only two years from retirement. He had seen it all and wasn’t impressed or dismayed by much.

“Thank goodness you’re there. How long will it take you to fix it?”

Now Charlie had had nothing more than the sketchiest description of the problem but he replied without hesitation, “Oh, about 15 minutes.”

“Great!” replied Sara. She transferred to a chair in the lobby.

After two hours of testing and questioning factory reps, the wheelchair was still not working right. Sara asked, “I thought you said you could fix this thing in FIFTEEN MINUTES!”

“I can and I will,” he replied. “Humm, just as soon as I figure out what’s wrong with it.”

I sat there waiting for my new doctor to make his way through the file that contained my very extensive medical history. After he finished all seventeen pages, he looked at me and said,

“Bill. You look better in person than you do on paper.”

Oxymoron: One who does not know how to use pimple medication.

Technical Books – “Sleeping pills you read!”

The pharmacist told me to take these pills as often as I can get the cap off.

http://www.topica.com/lists/CripHumor Polio Survivor Marsha in Texas <marsha1945@sbcglobal.net>

Queensland research into polio survivors

An article, The late effects of poliomyelitis in Queensland, by physiotherapists Mary Lynch and Nancy Low Choy was published in the June 2004 issue of Australasian Epidemiologist. It reported a questionnaire survey of 126 survivors who were recruited from the waiting list of a Brisbane Post Polio Clinic (no longer operating). The most common new symptoms experienced by polio survivors were new muscle weakness (87%), unusual tiredness (79%), joint pain (79%), cramps (71%), walking changes (69%), muscle pain (61%), and increased falls (60%). The main activities of daily living which survivors needed increased assistance with were heavy household tasks (46%), climbing stairs (42%), and using public transport (37%). Changes to their employment (eg working fewer hours) had been made by 67% of respondents who were still working. Almost all survivors (83%) reported having made lifestyle changes as a result of their symptoms.

Expert patients and doctors

As very few health practitioners are well informed about the late effects of polio, most polio survivors have had experiences of having more knowledge about some aspects of their condition than do the practitioners they consult. Some practitioners value their patients’ knowledge and are keen to learn more about PPS. Other practitioners ignore or angrily dismiss our knowledge. The editorial in a recent issue of the British Medical Journal (27/3/04) carried the headline, ‘Expert patient—dream or nightmare?’ It said that when doctors come across the term ‘expert patient’ they hear different things, ranging from doctors who regard expert patients as people who have the confidence, skills information and knowledge to play a central role in the management of life with chronic diseases to those whose expert patient of the imagination is one clutching a sheaf of printouts from the internet, demanding a particular treatment that is unproved, manifestly unsuitable, astronomically expensive, or all three. Or possibly worst of all, a treatment the doctor has never heard of. The BMJ comments: If one asks lawyers, architects, social workers, or management consultants whether they prefer clients who take an interest in the issues they face and are motivated to work in partnership to achieve successful results, the answer seems obvious. So why does the idea of expert patients provoke such antipathy within the medical profession? The Chief Medical Officer for England is currently promoting the idea of the person with chronic illness becoming an expert or knowledgeable patient. Surveys show that most British doctors dislike this promotion; 63% saying expert patients will take up more of their time. In fact, says the BMJ editorial, research studies show that expert patients make less visits and better use of visits to doctors and manage their symptoms better. In any case, says the editorial, all patients with chronic conditions and their carers are experts regardless of how much medical knowledge they may have.…As highly educated professionals in well paid employment, doctors are not necessarily best placed to

understand the realities of life for many of their patients, particularly those living with debilitating medical conditions, who are disproportionately unemployed, old and poor.. The editorial concludes: Long live expert patients—but in the interests of doctor-patient relations, let us find something else to call them. What we need is a simple, understandable phrase that is less prone to evoke hostility. For our money the best term is ‘involved’…involvement clearly requires at least two parties, rather than implying that the health professional role is somehow redundant …Neither intimidating or patronising, involvement is a broad church in which many if not most of us would be happy to find a home.

‘End of polio’ exhibition

The Griffin Museum of Photography near Boston recently presented this exhibition by Brazilian photojournalist Sebastiao Salgado. One reviewer (Milford Daily News 29/8/04) wrote that Salgado documents the suffering and hopes of humans ravaged by polio with unforgiving realism. An 11-year-old polio-stricken child, wearing sandals on his knees for protection, crawls into a soccer game in Somalia. A father pours a vial of vaccine into his son’s mouth in a railroad car in India where they’ve been confined to prevent the disease’s spread…[the museum director says] Salgado’s photos ‘go far beyond promoting public awareness of a cause. They grab you and force you to face the pain of others with the hope that you will be motivated to fight for change’. Many of the photographs can be viewed on www.endofpolio.org/home.html. Large posters of some of Salgado’s photos will soon be on display at Westmead Hospital. His photographs will also be shown at a Rotary exhibition on polio to be held at the Australian National Museum in Canberra from December to February, 2005. The Managing Director of Aventis Pasteur, which will be a major sponsor of the Rotary exhibition has presented the Network has a book of Salgado’s photographs.

Rhonda Galbally and polio

Rhonda Galbally AO has recently written her autobiography, Just Passions, published this year by Pluto Press. Rhonda was CEO of VicHealth and has started a company, Our Community, to support and advocate for community groups. Rhonda contracted polio when she was 13 months old and spent much of her childhood in hospital having surgery. Her family all hated my disability. We saw it as the worst thing that could happen to a family…I would have given any thing, promised anything, for the miracle of complete recovery..Her parents resisted health practitioners’ pressure to place her in a school for crippled children. Some children, she writes, were not so fortunate. Their parents would choose full-time medicine over full-time education…By focusing on physical gains, these children would end up as adults with little education, often having to take jobs in sheltered workshops (some of which are sweatshops) or having no job at all. As an adult Rhonda confesses to an awful secret — I shared other people’s loathing of disability. Until I joined the disability rights movement I didn’t recognise my own hatred of disability—it had been repressed…I was leading a split life. I demonstrated in front of the Miss Australia Quest, a beauty contest run by the Spastic Society on behalf of disabled inmates who were never going to win…At the same time I would still

have done anything to avoid being thought of as really disabled. So I refused to use a wheelchair at airports, even though I’d nearly pass out from pain and exhaustion as I struggled down the concourse. The late effects of polio led to Rhonda in turn adopting walking stick(s), crutches, scooter and wheelchair. Paradoxically, the more I use equipment the more disabled I look to others, but the more mobile I am. I tried to explain this to my mum, who took months to agree to go walking with me in my chair. It’s not a failure, I told her…it’s a symbol of flexibility and success in finally coming to terms with my disability. Rhonda says her first childhood experience of technology was as a sadistic tool of mainstream medicine. One evening with a friend, who has cerebral palsy, The grog loosened up our memories and took the edge off them, making them bearable to recall and even tell one another. It also loosened our sense of humour. We shrieked with laughter (with a strong edge of hysteria), as we tried to imagine the mentality of the person who made up instruments of torture to stretch little babies; he must be called Thomas, because the main weapon was the double-Thomas splint, a rack where little children were spread-eagled on a crucifix with parted legs and tied in with bandages so they could move only their hands. Your feet were bandaged into plaster boots, and a strap drew out your knees…Your hands were set into beautiful beaten stainless steel, to prevent them going out of shape. And you just lay on a bed and looked at a ceiling. After spending two years in one of those things all my muscles had atrophied. It was gross and excruciatingly painful. And in hospital I missed my mum and dad and big brother and lay in a state of terror and despair like a torture victim. As an adult the much travelled Rhonda still found leaving home extremely anxiety provoking, even for domestic flights (even for car trips). I had a dread of never returning, or of getting back and discovering that home had disappeared. I was still stuck in the feelings I had as a baby of thirteen months, when my home disappeared completely…For years after I came home from hospital, if things weren’t directly in my sight, I’d think they’d gone. I even hated playing hide and seek—I might never be found. There is much else of interest in this fascinating book. Look for it in your local library.

Post-polio and menopause

Post–Polio Health International (formerly GINI) has funded research at the University of Michigan, to investigate whether women with late effects of polio experience menopause differently—physically and emotionally—than do their nondisabled peers. A group of male polio survivors was also included in the study to examine whether their well-being differed from age-matched polio women both preand post-menopause. The complete report is online at www.post-polio.org (click on research). These are some of the findings: Polio women who had a natural menopause (eg not caused by hysterectomy) did so at the same age, on average, as did non-disabled women. Polio survivors were more likely to have had a hysterectomy (almost 35%) than the US average of 21%. More polio women (39%) used hormone replacement therapy than did their non-disabled peers (23%). It would be interesting to know why these differences occurred and whether they exist in Australia. Overall there were no differences in post-polio symptom severity, activities of daily living or emotional well-being between polio women who took, or did not take, HRT. Polio women using HRT did not report an improvement in post

polio symptoms. On average polio women approaching menopause were more satisfied with their lives and less unhappy than were post-polio men their age, but women who were at least five years into menopause were more stressed than their male counterparts. They also reported more severe post-polio symptoms. The authors say that the findings suggest an acceleration of decline for women compared to men in later years; this will require further investigation. In general, polio women in this study had an overall positive (45%) or neutral (35%) experience of menopause. Fewer had a negative experience (18%). Both female and male polio survivors reported somewhat more stress than the national US ratings for their age groups. The differences in stress levels was only substantial in the case of middle aged (45-55 years) polio women who reported much greater stress than their non-disabled peers.

Elimination of vaccine related polio in USA

The October 13th 2004 issue of JAMA (Journal of the American Medical Association) reported that the changes in US polio vaccination policy have resulted in the elimination of vaccine-associated paralytic poliomyelitis (VAPP) in the US. Prior to 1997 vaccination in the US was from the Sabin oral live vaccine (OPV). Then a policy of using IVP (Salk inactivated vaccine, IPV) for the initial vaccination followed by OVP for subsequent inoculations was introduced. In 2000 an exclusive IVP schedule was adopted. Between 1961 and 1989 an average of 9 cases of VAPP were confirmed each year in the US. Between 1990 and 1999 59 cases of VAPP occurred. No cases occurred among people who had the IPV-OVP schedule nor among those who had only IPV. The last case of VAPP in the US occurred in 1999.

In Australia IVP is recommended as the preferred form of vaccination but IVP is not as yet funded by the government, which does fund OVP. An article, titled Polio cases slipping through the net, appeared in the Sydney Morning Herald on October 16th. It said that According to international guidelines, one case of VAPP can be expected from every 2.4 million doses of Sabin vaccine …in Australia this equates to one case every three years but there have been only two probable cases since 1986.Concern was expressed that some cases of VAPP are going unrecognised here.

Polio virus escapes from laboratories twice

The polio eradication exercise is beginning to acquire shades of a science thriller, according to The Times of India, October 6th, 2004. Polio virus has escaped twice from Indian laboratories and caused 10 cases of paralytic polio. Laboratory strains of the virus were identified in three polio cases in 2000 and in seven recent cases. A task force has been set up to investigate which laboratory(s) the viruses came from. Initially however it has to come up with a list of laboratories that store polio virus, a formidable task that may take two years as there are many private laboratories in India and there is no requirement that they be registered.

When I sit at the bedside of an ailing patient, I try to reconstruct the series of pathological events causing that body to fail. Applying a method of reasoning originating over 2,500 years ago with Hippocrates. I hope to make a proper diagnosis, prescribe a suitable program of treatment and predict an outcome.

Each time physicians trace the development of an illness, we are propagating the science of methodology of medicine’s ancient roots. In most circumstances, disease is not the inevitable outcome of a single event or point in time, but rather a probalistic result of many events, each impinging on the individual, producing the sum total of his illness.

The ultimate reaction and implementation of treatment should be the result of a reverent pact between the patient and doctor. In theory, the practice of medicine should evolve from the foundation of our history and continue to provide education, advice and ultimately, decision-making for proper treatment. Such lofty goals require time, interest, and a partnership between the patient’s life and the doctors judgement.

However, America is where the dream ends. We have awakened instead a healthcare nightmare—a system like an amalgam between a fast-food restaurant and a discount department store: ‘Patient: Drive thru and heal thyself.’

Do we want a health-care system in which market forces and profit motives of Fortune 500 corporations and their clerical representatives make decisions for us?

American health care has become sort of a lottery. If you work for an employer that provides generous benefits, you win. If you work for a small company or are independent, you may in fact lose. Insurance companies—publicly held corporations that answer to stockholders—may decide which doctor you can see, how much and what type of medications you can take, whether or not you qualify for a test, and how long you can stay in hospital. Protests by patients and doctors are almost irrelevant. Medical conditions can be evaluated by insurance clerks who have no medical education and have never met the patient.

Politicians love to say that the United States has the best health-care system in the world. It does not even come close. We certainly have a nation of highly trained, talented professionals who work with the latest equipment and are capable of delivering first-class care. However, time and financial constraint often invoke limitations. Politicians, economists and corporate executives fail to mention that the system is rigged with incongruity in a way that would not be tolerated in the sale of any other consumer product.

The United States spends more on health care than any other nation. Yet, it is no

surprise that its health-care system is in a crisis. Insurers pay for medications to improve a man’s erectile function, yet deny coversage for a woman’s mammogram. Taxpayers subsidize pharmaceutical research costs, yet pay more than anyone else in the world for medicines produced through such research. Our government imposes cumbersome regulations on health-care providers and facilities, yet withholds resources and funding that would enable compliance.

The system is complex and unwieldy, but it does not have to be this way! This health-care crisis needs to be treated like any other national challenge with seriousness and focus. But as long as Washington maintains the illusion that market-based medicine will heal our health-care system woes, billions of dollars will continue to be wasted, and companies will continue making money by denying care and services.

A plan should be created to redirect resources into taking care of actual health care needs and delivery while minimizing the overwhelming labyrinth of administrative and liability overhead. Ultimately, the patient needs to be empowered with valuable information on how to be a smart consumer of health-care services. When all else fails, be a good patient: Focus on prevention, wellness and self-education. Form alliances with health-care professionals whom you trust and can serve you as advisers and mentors. Your care is in your hands as much as it is in the physician’s. It is certainly a far cry from ancient Greece, but the reality is, you must be your own best advocate.

J. Terry Petrella, M.D, M.B.A., is a clinical assistant professor of neurology at the University of South Florida School of Medicine in Tampa and maintains a private practice in Sarasota.

February 25th 2005.

Reprinted by express permission of the Sarasota Herald-Tribune”

Please contact Jan Gehle, jan.gehle@heraldtribune.com for permission to reprint. Why not send Dr. Petrella a copy of your newsletter.

Dr. J Terry Petrella, 2800 Bahia Vista Street, #200, Sarasota, Florida 34239, U.S.A.

01522 888601

Di Brennand—Phone Team Leader Would like to remind members not on the Internet

that a call to the above number will tell you which of the Phone Team

Di, Pat, Margaret or Judy is on duty that week.

They will be only too pleased to help with your query. Pat—It is great to have you back again.

Yellow Card Reporting and, Monitoring the Safety and Quality of Medicines: New Drugs Under Intensive Surveillance (Black Triangle Drugs)

by Di Newman, Committee member and, Co-ordinator Cambridgeshire Neurological Alliance

This information was gleaned from the website of the Medicines and Healthcare Products Regularly Agency (MHRA), which is part of the Department of Health and monitors the safety of medicines in the UK. It collects information about suspected reactions to medicines including prescription medicines, herbal remedies and other medicines you can buy without a prescription. To find out more about the MHRA, visit their website or call 020 7084 2000.

If you think you or someone else has had an unwanted or harmful reaction after taking a medicine (a suspected adverse drug reaction – ADR), the MHRA would like to know. Reports are made of ADRs, by GPs, medical and health professionals, dentists, etc, on a ‘Yellow Card’ system, OR, report the ADR yourself, by phoning the above, or completing a “yellow card” form, or online (website access to updates, reports, monthly listings of current drugs under “intensive surveillance” and, various related information). If you think the reaction is serious, contact your doctor or phone NHS Direct on 0845 4647.

What are Black Triangle Drugs? The Committee on Safety of Medicines (CSM) / MHRA (Medicines) encourages the reporting of all suspected reactions to newer drugs and vaccines (those products that are indicated by the inverted black triangle symbol).

If you see the Black Triangle Symbol against a product entry in the British National Formulary (BNF), Nurse Prescribers’ Formulary (NPF), MIMMS, the ABPI (Association of British Pharmaceutical Industry) Compendium of Datasheet and Summaries of Products Characteristics and advertising material, this indicates that the CSM / MHRA are intensively monitoring that product.

A black triangle will be assigned to a drug if the drug is a new active substance. However, a product containing previously licensed active substances may also be monitored if it meets one or more of the following criteria:

A new combination of active substances; Administration via a novel route or drug delivery system;

A significant new indication which may alter the established risk / benefit profile of that drug

The CSM / MHRA wish to receive all suspected ADRs associated with these products in order to confirm risk / benefit profile established during the pre-marketing phase. The black triangle drugs are monitored closely for two years and the black triangle symbol is not removed until the safety of the drug is well established.

Other information available on the MHRA website: Investigations into misleading advertising, pharmaceutical mis-representation by representatives, suspensions of drugs, tissue engineering, SSRIs, vaccine safety, clinical trials, devices information etc.

Related websites:

∗ Medicines, Healthcare and Products Regulatory Agency: www.mhra.gov.uk

∗ British National Formulary (information on all drugs – e.g. policies, uses / side effects,

registrations, etc): www.bnf.org

∗ Yellow Card www.yellowcard.gov.uk

∗ The Association of British Pharmaceutical Industry (Latest news “Response to Health Select

Committee Report ‘The Influence of the Pharmaceutical Industry’ and ‘NICE’s draft

recommendations on Alzheimer’s medicines are blow to patients and to future research’):

www.abpi.org.uk

by Drs. Susan and David O’Grady, Ph.D.

How does post polio syndrome affect survivors and their families emotionally and interpersonally?………..

The late effects of polio are threatening and upsetting because they change the things people can do and how they do them….. These changes are emotionally upsetting, affect self-image, challenge a person’s idea of who he or she is, and push a person into new roles in relation to others roles not necessarily wanted or sought.

Most importantly, you can’t do what you used to do, what used to be easy, you now have to work hard to do what you used to do independently. You now have to have help to do what you used to do or use an adaptive device. What used to be comfortable to do, you now do only with significant pain. What you used to accomplish in two hours now takes half a day and then you’re too tired to do anything else…………

And there’s anger at being forced to drastically and unexpectedly alter one’s lifestyle. People ask, “Why me, or why us?” There is a feeling of being cheated, having already faced the effects of polio and have managed to live with it, now the polio has tricked you, robbing you again, forcing more changes. The old coping strategies of minimizing, overachieving and overcompensating cannot be used in the same way as in the past…… It is natural to feel a deep sense of loss of one’s identity and of abilities. …

A common aspect of post-polio is chronic pain which affects us in many ways. It affects our thoughts, our mood and our relationships. People become more internally focused…… Some may feel depressed and discouraged because they can’t do the things they used to do…. Pain creates internal stress. Stress in turn affects our perception of pain.….. You need to learn ways to relax, to regenerate emotionally and physically……

Why do people (spouses/family members*) hold back from expressing their feelings? Sometimes they are afraid to talk about the current changes as they don’t want to draw attention to the fact that the partner is changing…… Many also feel protective of their partner…… Some don’t feel they have the right to complain, or resent having to make sacrifices, work harder, do more than the spouse, and give up activities, but they may feel too guilty to express any of these feelings…….. Many partners feel frustration at not being able to do more to help, or are frustrated at seeing the polio survivor make mistakes in pushing too hard and not pacing themselves and being unable to stop them.

Loss of control is at the heart of all disabling conditions, and often this loss of control is felt almost as strongly, although differently by the families and friends of

the disabled.

At the Workshop: What polio survivors had to say, what families had to say.

“What part of the experience of the post-polio syndrome is most difficult to communicate to your spouse/family?”

Paraphrased, here are some of the areas of concern:

Polio Survivor.

• We are afraid of what the future holds…….

• We are afraid that our physical needs will place such demands on our

families that they will grow weary and resentful and withdraw support…..

• We want family and friends to not judge us by our appearance.

Appearances can be deceiving……

• When we are tired, we mean it. In fact, it usually means we’re

exhausted

• Sometimes we need to put ourselves first, which is difficult for most of

us to do, as this is a major shift for us……

Partner and family.

∗ It is difficult to see our partners in pain. We feel helpless…

∗ It is hard to see our partners reject changes that would help them cope

better……….

∗ The lack of predictability of the illness is frustrating and frightening

∗ Sometimes our partner’s anger is hard to deal with………

∗ Over time, our role in household responsibilities is getting larger. We

accept this. Still, your comment of appreciation is very welcome.

∗ Some of us feel concern about our own physical ability to provide care

for our partners as we, ourselves, age and contend with our own aches

and pains…………

∗ It is difficult to know when to be the cheerleader, when to be comforting

and soothing, and when to confront anger or passivity. We’d like to feel

we have permission from our partners to express our feelings about this

In conclusion, there was broad agreement that life is all about challenge and response, that amidst all the hardship, post-polio presents an opportunity for personal growth for both survivors and family if the challenge can be faced with flexibility, acceptance and openness.

[It is good to share experiences not only polio survivor to polio survivor but also family member to family member in a similar position. “Does your mum do that too?, gosh I thought it was only my mum. I love her so much but she is so stubborn, she repeatedly says no she does not want any help and then the next day moans at me because I never help her. Are all polio survivors that stubborn?” We often suggest getting a pen or phone pal, meet up with other members near to you but rarely does this take place. If anyone would like to do this then please let us know and we will help. Those who have attended Annual Meetings will tell you, that sharing stories and experiences often changes

stress and anger to laughter.. “I asked for a full base line assessment and he put his hand on one knee and said push, then the other knee and said push. That was it!” “I was denied night time care because at question 99 I lightheartedly replied that I can roll over in bed in my silken underwear”]

TRAVELS WITH A WHEELCHAIR Alan Russell visits China

First published in issue 24 (Autumn/Winter 2002) of “discover”, the magazine for disabled people by disabled people in Cornwall.

If ever I attended journalist college, (which is highly unlikely), I am sure that one of the main things they will teach me is “try not to lose your reader in the first paragraph”. Well, I am sorry, but if you are 100% reliant on a wheelchair, and are unwilling to be carried for most of the time, then China is not for you. The places that we visited (and they were the main sightseeing places) are totally wheelchair unfriendly, and I would go so far as to say that even if you had severe walking difficulties you would find it very hard.

We set off from Heathrow and flew with Air China to Beijing. A comfortable enough journey, but total chaos at the airport on landing. Luckily Travelsphere Holidays provided a tour manager to assist us through all the red tape, and immigration formalities. Then the fun started. There was no way out of the airport to the coach park without going over 12” high kerbs or down steps. The coach drivers in each place were very helpful, but the coaches had very low underneath storage, so the chair had to be completely dismantled every time it was loaded. We stayed in four different hotels and on board a ship, all of which had steps and stairs everywhere, and no ramps. With the exception of the ship they all had lifts, but to reach the lifts you had to climb steps. None of the rooms were accessible to a wheelchair user, and the toilet pan was so low that fit people had to be cranked up to get off it.

That said, it sounds as though we had a rough time. Well that would be very wrong. The China we saw is one of the most fascinating, friendly and safe places we have ever visited. On our first full day we visited Tian-an Men Square and The Forbidden City. Both of these have very rough paving, and walking over them is dodgy, but there are plenty of places to park your bottom as you flow through the numerous temples, palaces and gardens. Something that you will notice on your first day is that the Chinese are noticeable for two things. One is deep throated hawking and spitting (we found the women held their own with the men). The other is their ‘interest’ in all things unusual. This is apparent by their staring very hard and long at you if you are blonde, tall, hairy or have a physical disability. After a while you realise that they are not being rude, and if you smile and converse in sign language, you have a friend for life.

Daily life in Beijing is truly spellbinding. It is a city of three million bicycles, bustling street markets and food stalls, but above all a warm and friendly people, eager to welcome and please their visitors. You will be approached by street vendors, but after the second polite ‘No’ they will leave you alone. However try haggling, it is great fun and you can pick up some tremendous bargains. Haggling is a way of life in China, start off at about 20% of what they ask, and settle at about 40%. The sellers enjoy it as much as you, and take no notice of the hurt look on their faces when you make a silly offer. Remember though; do not start to haggle unless you really are interested in buying. Watch out for fake Rolex watches at around £3, but post cards and guide books can be bought for next to nothing. Do not buy fruit unless you can wash, boil or peel it, and make sure that the water you buy has an

unbroken seal. (Whatever you do, do not drink, or even clean your teeth with, the local water) Unscrupulous vendors sometimes re-fill used bottles from the main. Hotels supply boiled water for teeth cleaning, and bottled drinking water is cheap (approx.25p)

After Beijing we flew to Wushan (approx. 1hour) and then a coach ride, past rice paddy fields ploughed by water buffaloes, to Shashi, where we embarked on our ship for a 4 night cruise up the Yangste River. The ship was superbly fitted, and the food and service was second to none, but it had 5 decks, and no lift. So your day must be well planned if you don’t want to wear yourself out. All through the trip, breakfast was a buffet of continental, English or Chinese (do you fancy quails breast and curried chicken wings for breakfast?) Lunch and dinner was always Chinese and banquet style, where you helped yourself from the 20 or so dishes on a roundabout in the middle of the table, and ate with chopsticks. Forks were available for those with manual dexterity problems. You could tell the ones who didn’t use chopsticks…they had clean tee shirts after the meals.

It was interesting and a little frightening to see the new dam on the Yangste, which will cause the river above to rise 175 metres and will affect people living near the river for 500 miles upstream. Millions of people are being relocated above the new water line, and the scenes of devastation as they demolish the old cities along the banks appear heartbreaking.

Chongqing was our disembarkation point. This was the headquarters of the Nationalist Chinese before the communist take over. It is a beautiful city built on very high hills, at the confluence of two rivers. It is famous in China for its love of very hot food, but luckily for some they do tone it down for the visitors. Here we met local people in their environment. I noticed that although they lived in what perhaps we might call a ‘slum’ area, the people and particularly the children, were so happy and spotlessly clean. I was put off a bit by the live ducks, chicken, frogs, fish and water snakes for sale in the market, especially when they were ‘dispatched’ for the purchasers there and then.

Next day we flew to Xian and a visit to the Terracotta Army. We met the farmer who discovered these full sized models, while drilling for water in 1974. They had lain undiscovered since 247BC, when they were made to guard the tomb of a Qin Dynasty emperor. Wisely, only a small portion of the site has been excavated, as the authorities feel that they have more than enough to get on with, and that time way well provide a means of preserving them better. At this site, a wheelchair pusher is provided on request, and he is properly trained in wheelchair handling. The cost? £3 for a day!!

After Xian, a short flight to Shanghai, a modern bustling city with modern skyscrapers on the one hand, and tiny shacks for some of the residents on the other. A gentle stroll along the riverside Bund area prepares you for the mad rush around the Nanjing Road shopping area and tiny markets where ‘Yves St Lauren silk’ shirts (oh yeah?) are sold for £3 and ‘Gucci’ hand bags are sold for the same amount. A night time visit to Shanghai is a must. All the buildings are lit at night, and everybody promenades as the weather is cooler then. If you don’t fancy promenading, you can always join the throng for communal line dancing in the

public squares, or Tai Chi in the parks. At no time did I ever feel threatened whether in the dark or in backstreets.

Our return to Beijing after a flight from Shanghai was to highlight our trip with a visit to a part of the Great Wall at Bad-aling. The Wall is 3,800 miles long, so this visit only scratches the surface. It is one hang of a climb… but… well.. I burst into tears when I reached the top. It was a lifelong ambition of mine to go there, and here I was, probably for the last time, and I soaked in every bit of the atmosphere while I was there. The feeling of being on the only manmade structure visible from space, parts of which are 2,600 years old, was just so emotional. Some rang their families from the wall only to be reminded that it was 4 am at home!! Oops!! I bought a ‘I climbed the Great Wall’ tee shirt and had my photo taken, (I told you I was emotional).

The flight home was fine, but again chaos ruled in Beijing airport and all I can remember is sitting in my chair for hours on end queuing for different red tape departments.

Oh by the way… Disabled access in the airports and visitor sites is referred to as ‘The Gate of Love’. Oh Yes. I think that Beijing was the gate to a country and people that I fell in love with. Would I go again? Hmm…. Not unless a miracle occurred and I was 100% fit; there were just too many steps, uneven pavements and high kerbs and not enough opportunities to use my wheelchair. I think that some people would miss out on a lot if they were susceptible to fatigue, as we were on the go for all the day, with not a lot of opportunities to rest. However, I wouldn’t have missed it for the world.

About the Author – Alan Russell is a founder member of the Cornwall Post-Polio Support Network and a regular travel columnist for “discover”. He can be contacted at alan.russell@originalthinktank.org.uk

Going To Europe? Important Changes to E111 Forms Get Medical Care in the European Union with an E111 Form

PLEASE NOTE: Old E111 forms expired on 31st December 2004.

Your new E111 form will be valid until 31st December 2005. New forms issued on an individual, not family basis.

The free E111 form entitles you to free or reducedcost state healthcare if you fall ill or have an accident while travelling in a European Union (EU) country.

Important changes to E111s If you’re planning to travel in Europe during 2005 and are a UK resident, you should apply for a new E111 form. Those issued before 19 August 2004 are only valid until

31 December 2004. Each individual traveller now needs their own E111 form, including children. However, if you’re a family you only need to complete one application form for you, your partner and your children. Later in 2005 the UK will be adopting the European Health Insurance Card (EHIC), which will be issued to those who have applied for the new E111 form and tick the box to receive the new card.

You can get your free E111 form and ‘Health for Travellers’ booklet at any Post Office branch.

PLEASE NOTE: that an E111 form is not a substitute for comprehensive insurance

For further information visit: www.dh.gov.uk/travellers, www.postoffice.co.uk or call 08457 22 33 44.

TRAVELS WITH A WHEELCHAIR

Top Left – Sampan (Daning River) Top Right – Terracotta Army (Xian) Bottom – Great Wall of China (Alan and Tricia Russell from right)

Photographs – Alan Russell Wheelchair graphic – Patricia Clouse

Original background photograph – David Bowers Layout Design – Chris Salter

Linc Pin Volume 5 Issue 3 Read More »

Linc Pin Volume 5 Issue 2

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 2 — February 2005

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

See Back Page

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

CONTENTS.

Page 2—Contents and Information Page 3—Editorial by Hilary Hallam Page 4—Message from the Chair Mary Kinane Page 5—Freedom of Information Act. Your right to know. Di Newman Pages 6 and 7—April 12th 2005—50th Anniversary of the Announcement The Salk Polio Vaccine is Safe and Effective. Pages 8 and 9—From the Texan One Arm Bandit, Ellen Riddle Pages 10 to 23—Tips and Bits from Volume 1 of the LincPIN. Page 24—Information on the 9th International Conference on Post Polio Health and Ventilator Assisted Living: Strategies for Living Well.

WE WOULD LIKE TO THANK THE FOLLOWING FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Ewan Peddie	Jenny Rayner	Sylvia Fortune	M Guild
M Horton	J Shaw	R Candy	S Dunnett
R Candy	D Nash	H Hallam

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – April 2005

Articles for publication 15th March by post or – newsletter@lincolnshirepostpolio.org.uk Management Committee

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk

Internet Services Administration Chris Salter – netadmin@lincolnshirepostpolio.org.uk

This is Issue Number 50 and I have to thank our member the ‘One Arm Bandit’ in Texas, Ellen Riddle for her hard work in helping put this issue together. In essence, she did all the research and provided me with the information and I have just set it up. Delay in your receiving this is due to the Printer being on holiday till mid February.

Polio Survivors around the world share information and personal experiences. Time and again it is these experiences that trigger another to take extra information to their health professionals and get answers for themselves. This is one of those times for us. Richard has just had some unexpected and unwelcome reactions to recent drug changes. With all the work I have done, all the advice searched for and offered in our newsletters and ‘we’ did not ask enough questions or ensure that information provided earlier had been remembered. Coping with all this has been exhausting.

There are times when we have to take drugs to manage our health. It is imperative that we discuss the drugs with our health professionals.

∗ What is this new drug called?

∗ Which symptom are you giving me this

drug for and what response are you

hoping for?

∗ Are there any side effects I should be

aware of?

∗ How long will I have to take this drug?

∗ Will it interact with the other drugs I am

taking?

∗ Have you remembered that I am allergic/

intolerant to x?

∗ Have you given this drug to other polio

survivors?

∗ Are you aware that polio survivors often

tolerate much lower doses?

∗ How much is the drug?

Richard was given a new drug from sample packs—take one now. When the side effects

started and we took out the drug package, and this really surprised us, is that the information normally contained with your prescription was not printed on/or included in the sample pack. Thank goodness for the Internet where we could read up the full report from the Drug Company regarding the drug and possible side effects etc.

Remember if there is information that you need to give a doctor/pharmacist regarding your allergies/intolerances etc., carry copies with you when you leave your house. Keep a few copies of a card showing the prescriptions you are currently taking, the dosages, timings and what for—in your wallet/purse, in your car, in a bottle marked with large Red Cross in your fridge. Use a magnet and make a card for the fridge door.

As we have members in different countries a little bit of information on cost only…. Basically, in the UK the charge for each item is £6.40 (about $11 US.) In the USA I have seen prescription charges from $11 for 90 tablets to $650 for 60 tablets.

Ninth International Conference on

Post Polio Health and Ventilator Assisted Living:

Mary, Denise and myself had our presentation How Self Assessment can help you provide better information for Health Professionals accepted and we will be doing this on Friday 3rd June at 3.15 p.m. More info on the back page, in the next LincPIN or at

www.post-polio.org/conf9th/prog.html

If you are not on the Net and would like information on attending the Conference now then send us a s.a.e.

I am now going to hand you over to Ellen to tell you all about how and why this Issue was put together.

(Continued on page 8)

Hello Readers,

Welcome to Edition no 50, which coincides with the 50th anniversary of the announcement of the Salk Polio Vaccine being ‘safe and effective’. Ellen Riddle has donated her time and energy this month in assisting us with the newsletter and you can read her contributions from page 8. We extend our thanks for her time and energy. We also acknowledge that it has been a particularly difficult month for Hilary and her partner Richard, and thank Hilary for setting up this edition.

We also wish to extend our condolences to the family and friends of member Eileen Bunclark, of Rotherham, Yorkshire, who passed on recently.

Later this year, the Manchester Polio Group (a branch of the British Polio Fellowship) are hosting a conference on August 22nd for which we are happy to provide contact information. Although already there is pressure on capacity as the venue is not huge, registration will be accepted on a “first come first serve” registration basis: If you are interested in attending, or would like more information to help you to decide whether to attend, please write to:

Eric Cook,

107 Ashton Road East, Failsworth, Manchester M35 9PP, U.K. (enclosing an S.A.E)

or call Eric Cook on: 0161 682 5847 or Guido D’Isidoro on: 0161 881 1248

The conference is titled “North West Post-Polio Syndrome Conference”, Monday 22nd August 2005, to be hosted at Tameside College, Ashton under Lyne, Manchester. This venue is small and non-residential but it is accessible and has its own car park, with parking for wheelchair users. There will be a charge of £15 a head, which will include lunch and all refreshments.

The Manchester Polio Group is a friendly and organised group who meet at an accessible venue every month in Manchester. They have invited two consultants to attend as speakers – Consultant Dr Carolyn Young, MD, FRCP, Neurologist at the Walton Centre for Neurology and Neurosurgery, Liverpool; and Consultant Dr Peter Mohr, Neurologist, Hope Hospital, Salford, Manchester.

That’s all the news for this edition – We wish all our members and friends good health and continue to encourage you to write, phone or e-mail us with your vieiws. All contact information on inside front cover.

Best wishes, Mary Kinane, Chair.

By Di Newman, Committee Member

The right under the Freedom of Information (FOI) Act and the Environmental Information Regulations (EIR) to request information held by public authorities, known as the ‘right to know’ came into effect on 1 January 2005, where you can ask for access to information held by all public authorities e.g. * central government and government departments e.g. * House of Commons and House of Lords * local authorities * hospitals, doctors’ surgeries, dentists, pharmacists and opticians * state schools, colleagues, and universities * police forces and prison services.

The Act and the EIR allows access to recorded information (such as emails, meeting minutes, research or reports) held by public authorities in England, Northern Ireland and Wales. This Act will give us all greater access to information e.g. about how decisions are taken in government and how public services are developed and delivered. The FOI Act operates alongside the Data Protection Act; which allows people to access information about themselves (e.g. personnel records, or information held by credit reference agencies) and ERI, which give people access to information about the environment.

Requests for information must be made in writing (e.g. letter, fax. e-mail), stating the information you are requesting and supply your full name and address. You do not need to state why you want the information. You can ask to have any recorded information. This could be in the form of e-mails, notebooks, videos or tapes. A response, in any event, must be received within 20 days, or an explanation as to why it cannot, and inform you know when you can receive a reply. Should your request be declined – you must be provided with a reason. You can ask for it to be reconsidered and if necessary ask the Information Commissioner’s Office (ICO), which is an independent body that enforces the FOI Act, and Data Protection Act, and the EIR, for a review. The ICO ensures the information is disclosed promptly and exemptions from enclosed applied lawfully, and in cases where excessive delays, refusals and disputes apply. There are 23 exemptions in the Act, some of which are ‘absolute’ and some ‘qualified’ (information relating to national security). A lot of information may be supplied free of charge. However, where any fee applies, you will be notified in advanced.

National Archives: The provisions under the Public Records Act – under which public records are closed until they are 30 years old – these are now available, as the so-called ’30 yr. rule’ has now disappeared. To mark full implementation of the Freedom of Information Act, over 50,000 files that are less than 30 years old have been released at the National Archives. This batch of releases, cover a range of topics – from The Ministry of Defence, Metropolitan Police and topics from – “research at Porton Down to arranged marriages.” Many, medical research, health and medical related matters including DSS benefits etc will be now available. Even thirty files on UFOs!

For further information and links:

Guidance on Freedom of Information: www.foi.gov.uk

Complaints, Resolution, Information Commissioner’s Helpline 01625 545 545

www.informationcommissioner.gov.uk The National Archives: www.nationalarchives.gov.uk List of public authorities covered by FOI Act:

Department for Constitutional Affairs – (Justice, rights and democracy):

Information Rights Division, Selbourne House, 54 Victoria Street, London SW1E 6QW

www.dca.gov.uk/foi/coverage.htm

For list of government A-Z of local councils and central government:

www.direct.gov.uk

April 12th 1955—Announcement, ‘The Salk Polio Vaccine is Safe and Effective.’

I feel that the greatest reward for success is the opportunity to do more. Jonas Salk.

When Dr. Jonas Salk envisioned the idea of the Salk Institute for Biological Studies, it was with the idea of creating a vibrant, intellectual community, dedicated to pursuing the kinds of scientific achievements that had made him an international figure only five years before.

Salk came to La Jolla following a career in clinical medicine and virology research. After obtaining his M.D. degree at the New York University School of Medicine in 1939, he was a staff physician at Mount Sinai Hospital in New York City.

He then joined his mentor, Dr. Thomas Francis, as a research fellow at the University of Michigan. There, he worked to develop an influenza vaccine at the behest of the U.S. Army. In 1947, he was appointed director of the Virus Research Laboratory at the University of Pittsburgh School of Medicine.

It was in Pittsburgh that Salk began to put together the techniques that would lead to his polio vaccine. He was already struck by the principle of vaccination: that if the body is artificially exposed to a harmless form of a disease virus, the body will produce antibodies that resist or kill the dangerous form of the virus if later exposed. In contrast to the Pasteurian dogma of the times, Salk believed that protective immunity could be induced without infection by a living virus such as those used in the vaccines against smallpox and rabies. In developing the influenza vaccine, he had observed that protection could be established using non-infectious, inactivated (killed) viruses.

Salk’s research caught the attention of Basil O’Connor, president of the National Foundation for Infantile Paralysis (now known as the March of Dimes Birth Defects Foundation). The organization decided to fund Salk’s efforts to develop a killed virus vaccine against the most frightening scourge of the time: paralytic poliomyelitis.

Using formaldehyde, Salk killed the poliovirus, but kept it intact enough to trigger the necessary immune response. His work was enabled by a key achievement made by Harvard researcher John Enders. Enders and his team had figured out how to grow poliovirus in test tubes. This step was necessary to obtain the quantities of pure virus needed to develop and manufacture a vaccine.

The resulting injectable vaccine was tested first in monkeys and then in patients at the D.T. Watson Home for Crippled Children (now The Watson Institute), who already had polio.

Next, vaccine was given to volunteers who had not had polio, including Salk, his laboratory staff, his wife and their children. The volunteers developed anti-polio antibodies and none had bad reactions to the vaccine. Finally, in 1954, national testing began on one million children, ages six to nine, who became known as the Polio Pioneers: half received the vaccine, and half received a placebo. One-third of the children, who lived in areas where vaccine was not available, were observed to evaluate the background level of polio in this

age group. On April 12, 1955, the results were announced: the vaccine was safe and effective. In the two years before vaccine was widely available, the average number of polio cases in the U.S. was more than 45,000. By 1962, that number had dropped to 910. Salk never patented the vaccine, nor did he earn any money from his discovery, preferring to see it distributed as widely as possible.

Given the fear and anxiety that polio caused during the first half of the century, the vaccine’s success in 1955 made Salk an international hero, and he spent the late 1950s refining the vaccine and establishing the scientific principles behind it. By 1960, however, Salk was ready to move on. Salk’s dream was to create an independent research center where a community of scholars interested in different aspects of biology—the study of life—could come together to follow their curiosity.

For more than a year, Salk toured the country in search of the right location for his research center. Finally, wooed by San Diego Mayor Charles Dail, who had had polio, he was drawn to 27 acres on a mesa in La Jolla, just west of the proposed site for the new University of California campus then planned for San Diego. With a gift of the land from the citizens of San Diego and with initial financial support from the National Foundation/March of Dimes, Salk was able to proceed. To bring his concept of free-flowing labs and quiet studies to life, Salk recruited architect Louis Kahn. The resulting collaboration is a series of elegant concrete structures that overlook the Pacific Ocean.

Under Salk’s direction, the Institute began research activities in 1963 and gradually expanded its faculty and the areas of their research interests. Salk’s personal research activities included multiple sclerosis and autoimmune diseases, cancer immunology, improved manufacture and standardization of killed poliovirus vaccine, and the development of an AIDS vaccine. He published several philosophical books and advocated cooperative rather than confrontational approaches to addressing human needs.

Completed in 1967, the original Institute buildings were declared an historic landmark in 1991. During Salk’s tenure as Founding Director, a major building addition consistent with his and Louis Kahn’s original architectural vision was designed and constructed. The Institute now has 56 faculty members and a scientific of staff of more than 850, with labs that house research on everything from cancer, diabetes and birth defects to Alzheimer’s disease, Parkinson’s disease, AIDS and plant biology.

The Salk Institute truly reflects the broad, humanistic interests of its namesake.

Salk died at age 80 on June 23, 1995. A memorial at the Institute with a statement from Salk captures his vision: “Hope lies in dreams, in imagination and in the courage of those who dare to make dreams into reality.”

Learn more…. http://www.salk.edu/jonassalk/

Jonas Salk’s Legacy: The History of Jonas Salk, the Polio Vaccine and the Salk Institute.

This program is available online courtesy of UCSD-TV and is viewable in Streaming

RealPlayer © The Salk Institute.

“Be good to yourself. If you don’t take care of your body, where will you live?” Kobi Yamada

A couple years ago I received this quote on a post card in the mail from a friend of mine. She is one of those people who have not only seen me go from very active to less active, from walking and hiking to wheeling around but has also taken the time to learn about PPS and has been walking beside me on this journey. On the flip side of the post card she wrote that she had picked the card up some years before just on a whim and had it in her stationary drawer. On this particular day she saw it, thought of me and sent it off.

It now hangs on the inside of my medicine cabinet where I see it throughout the day. Not that I always look. But I believe its being there is a helpful reminder. I simply must continue learning how to take care of my body. Something that until PPS came along I not only never thought about but I didn’t really do despite my exercising, dieting, jogging and push-ups because until PPS garnered my attention I never listened to my body’s complaints about my over zealous beating up on my body in the name of ‘good health’.

When Hilary called me to brainstorm about ideas for this month’s newsletter I had been looking at the post card at least once a day and asking myself if I was honestly taking care of my body or was I sort of hedging the corners, making exceptions and falling back into turning a deaf ear to its cries for proper attention? Hence we found the theme for this month’s newsletter.

It just happens that this corresponds with the 50th issue of the newsletter, and the 50th anniversary of the announcement on the Salk Polio vaccine. What better way to celebrate both of these 50’s than by going back to past issues of the LincPIN and pulling up “bits and tips” from some of the many articles published since the first newsletter printed in September of 1996? What follows are ‘bits and tips’ from articles that I thought would be of interest to read — reread if you have been a member that long. The complete articles can be found on our Website or if you would like to order back copies of newsletters please contact Robin Butler. [See Page 2]. Volume 2 bits in next newsletter.

Let’s kick off 2005 with a renewed determination to continue learning about PPS, how it affects us and those we love, and what we can do to once again go beyond just ‘surviving’ but enjoying life to the full within our limits. After all, it’s your body, take care of it, if you don’t, where will you live?

I’ve just finished the 50 “bits and tips” from Volumes I and 2 of the newsletter. I sit back with a few feelings that I wish to share with you. One is amazement that so much of what was printed between the fall of 1996 to the fall of 2000 is still very relevant today. Yes, there are some articles that when I scanned I realized that with more study and information the ideas have been improved, tweaked and maybe even changed, but over all there is a lot of really good stuff lurking in these past issues.

(Continued from page 3)

Another, is that I was struck by how many PPS-ers who are members of Lincolnshire Post-Polio Network from around world were making contributions back then. Sadly, I read a few from those who have ended this part of their life journey and felt the sharp pangs of realizing just how missed they are. But, there are many still here and many new folks who weren’t members back then. I would like to encourage everyone to take a few moments as you go through the riches found in this newsletter and note that while some are from the professionals doing much to help us along, many items are from every day survivors; other PPS-ers just like you and me. I encourage you to sit back and think of what you might be able to contribute. Be it experiences, your polio/pps story, things that you’ve found that make your day to day living easier and more ‘body friendly’. Maybe it’s a good or a not so good experience with a doctor or clinic and how you handled it.

Yes, it takes time and energy to contribute. Actually doing it can be as simple as forwarding a copy of an email you sent to one of the pps groups you are active with to Hilary to include. Not to worry about writing the ‘perfect piece’ any more than you do when you help others by sharing via email/letter/phone. Share your successes and your problems; your questions and fears along with your answers and hopes. If more of us jump in and share then when we reach the point of celebrating 100 issues there will once again be so much to choose from that whom ever is doing the ‘bits and tips’ will find themselves sitting back in amazement at the wealth of information as I have done this time.

Finally, I have a confession to make. I caught myself up short as I went through the newsletters. It was difficult to remain really objective and select “tips and bits” that I felt would be of interest to everyone. I think over all I succeeded until I reached an issue that mainly dealt with calipers and bracing. I didn’t at first include any of these articles. Then as I was falling asleep that night I sat up and asked myself ‘why?’ The reason is simple. I’m an upside down polio. I have never had braces of any kind. But more than that, in the pit of my being it is something I deeply fear. That even though I’ve gone to using a power chair more and more in hopes of conserving and keeping my legs at the strength they now are I don’t really have any guarantees that I won’t find myself needing a brace. This is something I have really avoided even pondering by simply skipping over such discussions on the lists as well as articles about them in newsletters since they ‘don’t pertain to me and I have nothing to contribute anyway’.

The next morning I got up, went to the computer and pulled up those issues. You will find a couple “bits and tips” on braces in the next issue. I wish I could say that doing this, really reading these articles, calmed my inner fears. It didn’t, but that is ok. At least I have admitted to the fear and will continue to hope that it doesn’t happen to me as I say the words we all say when faced with a PPS related fear, “we are all different.” At the same time I will be listening even more to my legs and taking the best care of them as I can, even if some day this means looking into the possibility of a brace. Now, all of you right side up polios, my hope is that you do the same with your arms. Just as I can lose ability in my legs you can lose ability in your arms if you don’t hear their whisper cries for care.

Member Ellen Riddle, the One Armed Texan Bandit.

moonshadow@lonellen.com With an upside down view…

POST POLIO SEQUELAE – True Answers for Friends and Family. R. L. Bruno PhD What are the treatments for PPS?

Polio Survivors basically need to conserve energy to stop blowing their bodies ‘fuses’. Polio survivors must walk less, use needed assistive devices (a brace, crutches, a scooter), stop working before symptoms come on, and plan rest periods throughout the day.

Are treatments for PPS effective?

Yes. The worst case is that patients who stop the overuse abuse will have their PPS symptoms plateau. However, when survivors start taking care of themselves, the overwhelming majority have noticeable decreases in fatigue, weakness and pain.

Isn’t exercise the only way to strengthen weakened muscles?

No. Since PPS symptoms result from too many ‘appliances’ being plugged into an overloaded nervous system, muscle strengthening exercise would be like plugging in a dozen additional toasters. While stretching exercise can be helpful, pumping iron and ‘feeling the burn’ means that polio damaged neurons are burning out. Also, polio survivors typically can’t exercise the way others do to condition their hearts and try to prevent osteoporosis.

BOUNCING BACK WITHOUT GUILT – Wendy Clyne PsyD.

When you were recovering from polio no one said to you, ‘You’re doing a great job but down the road, twenty, thirty, forty years from now you might have some problems’. To have to deal with the unpredictability of having symptoms returning or other symptoms coming back is extremely unsettling. Whenever someone feels like they’ve gotten sideswiped in life like this, feelings of being helpless, feelings of being out of control, feelings of vulnerability are very normal. Feelings of denial, anger, and frustration are also normal in these situations.

……….your reactions are coloured not only by the physical limitations that you have, they’re also coloured by your memories from the past. They’re coloured by how much interference those physical limitations caused in your lifestyle, in your sense of self, and in your coping strategies.

……….you might start having trouble breathing and start to panic; you’re not reacting just to the current situation of breathing trouble, you’re reacting to that situation plus being flooded with memories of having trouble breathing and wondering if you were going to survive when you were a child. You may not be aware of it, it may be happening unconsciously.

………..You’ve worked very hard to get where you are. Now suddenly, people are telling you to slow down, don’t push so hard, don’t work so hard. This goes against everything you’ve learned to do to overcome your disability.

………….A piece of grieving and loss is trying to redefine your sense of self, regaining your sense of self-esteem. If you were praised and recognized for overcoming your obstacles and for your productivity and suddenly you’re no longer able to produce, many people start to devalue themselves. You need to value yourself outside your accomplishments.

Dr. Henry writes…

I find that the central fatigue when it is debilitating causes sleep disturbance, a feeling of being constantly tired even when one wakes up and tends to become more severe in the late afternoon. Everyone with PPS has tried to find what works best for them, and there is much variety.

I remind myself that the polio virus was very specific in where it did its damage, but no two cases of acute polio were exactly alike. Consequently, although there are many similarities in the symptoms of PPS (that is why it is called a ‘syndrome’), the manifestations of PPS are never EXACTLY the same in any two of us. As a result, the medical profession is puzzled as to what to do even when medical people are knowledgeable about PPS.

Do you exercise or not? Do you prescribe pain meds and contribute to someone attempting to resume activity and further weaken motor function?

Do you prescribe antidepressants since some surveys indicate one quarter to one third of PPS’ers meet the diagnostic criteria for Major Depression? But what dose do you prescribe since most PPS’ers respond to lower doses if they respond, and it seem most PPS’ers are more sensitive to side effects than just depressed patients.

Henry Holland, MD. [Henry4FDR@aol.com]

KISSING FROGS BY TANIA IN USA – (Sound familiar?)

Thanks to this Newsgroup and other Internet resources I finally self-diagnosed myself as PPS.

Been to see my General Practitioner, and she agreed and sent me to a Neurologist. Neurologist, very nice, wanting to learn but less knowledgeable than I am, From there to a Physical Therapist, also nice, but not knowledgeable either, Requested a Physician, got another darling doctor who didn’t know much either.

So after kissing all these well meaning frogs….. I have decided on my own course of action, the least intrusive possible. Absolutely no pharmaceuticals at this point. Physical therapy in a WARM pool (we’re fortunate to have one in town) Acupuncture and Chinese herbs, good vitamins and supplements.

POST-POLIO AND PHYSICAL THERAPY—Susan L Fish MAPT

Do’s and Don’ts to keep in mind when going for physical therapy.

∗ Do trust yourself and the knowledge you have gained over the years about your

body.

∗ Do be willing to alter your lifestyle.

∗ Do avoid fatigue.

∗ Do get enough rest.

∗ Do pace your activities rather than discontinuing them.

∗ Do conserve energy. It may make more sense to spread your activities out,

allowing for rest periods, rather than eliminating interests and activities.

∗ Do recognise that your body is aging and some physical changes will occur

which are not related to post-polio. There IS a normal aging process even

though post-polio may be a part of it.

∗ Do respect your feelings. This may be a difficult adjustment time for you;

seeking emotional as well as physical guidance may be a wise thing to consider.

∗ Don’t follow advice regarding physical exercise if you become fatigued while

doing it.

∗ Don’t become short of breath with exercise.

∗ Don’t do more than your body feels comfortable doing.

∗ Don’t cause pain with activity or exercise.

∗ Don’t gain weight.

∗ Don’t reject using aids and assisting devices without giving them serious

thought. (They are meant to conserve energy and preserve anatomical

structures, i.e. joints, muscles, tendons, cartilage and ligaments.) Most are

delighted and surprised by the increased endurance and energy they have with

the use of canes, wheelchairs, motorised scooters or the many other easily

found assisting devices

EXERCISE – WHAT IS RIGHT FOR YOU.

Mavis J. Matheson. MD. April 1995.

Determining how much we should do isn’t easy. We must learn to recognize fatigue. We must learn which pains mean overworked muscle and which are part of normal aging. We need to pay attention to our bodies and use pain and fatigue as signals. We have to let go of the ‘no pain, no gain’ philosophy we learned while we were recovering from polio.

……………For each limb, ask yourself “What is the most severely involved muscle in this limb?” “is that muscle weak?” and “Am I noticing signs of increasing weakness in that muscle?” Increased pain in the muscle, twitching, decrease in quality of movement, being able to walk shorter distances, having more trouble with stairs, more difficulty standing, muscle wasting, difficulty holding your arm up, driving, dressing and tiring with fewer and fewer repetitions during your regular

exercise routine are common signs of increased weakness in a muscle or limb. ………Whatever your exercise program, continue to make changes to help you conserve energy. Pay attention to fatigue and rest when you are tired (before you are exhausted). If you are overweight you need to lose weight.

PPS QUESTIONS AND ANSWERS, MARCH, 1995 by Drs Richard Bruno and Nancy Frick

Every Polio Survivor [PS] is different. But, the rules that apply to every mortal apply to PS. Anyone who has too few overworked, damaged nerves compensating for muscle weakness for over 40 years is bound to have some problems. And, when you .add PS super Type A lifestyles and the fact the they work more hours of overtime than non-disabled people, something’s got to give.

…..the good news it that the study cited below and our new follow-up study of all the patients we have treated show that if you listen to your body and stop doing the things that cause weakness, fatigue and pain, PPS often plateau and can even decrease

…..Listen to your body! If you are doing things that cause fatigue, weakness or pain STOP DOING THEM!!!

…..Pacing and resting doesn’t mean sitting or sleeping all day and not moving. You should be doing what you need to do for yourself, and at your job, but in a paced, energy conserving, Type B fashion.

…In our follow-up of all the patients we have treated, the three factors that were related to a significant decrease in fatigue were

1. completing the PPS therapy program;

2. doing absolutely nothing for 15 minutes twice a day;

3. using a wheelchair or scooter for distances

….Cold is the Number 2 cause of muscle weakness in PS but is the easiest to treat.

….even if drugs are found that help, PS must still listen to their bodies and live their lives in a paced, energy conserving, Type B fashion. There is no magic pill.

….sleep disorders, such as sleep apnea, are not uncommon in PS. If you snore, wake not rested, with a headache or are depressed, you should talk to your doctor about a sleep study.

Many PS report another kind of muscle movement during the day: fasciculation’s. These are muscle twitches you can see or feel. Fasciculation’s are found in many non-disabled people. Usually, they are a sign, as is muscle pain, of muscle overuse. Again, talk to your doctor about any twitching.

Politically Correct from Dan Miller in Washington State

In the 1950’s they called me crippled. In the 1960’s I was handicapped. In the 70’s the term was disabled.

Then in the 80’s I was physically challenged. Now in the 90’s I am mobility impaired. I wonder what I will be next?

Doctor, Wheel Thyself – By Richard Louis Bruno, PhD. [Evening conversation in hospital lift/elevator between

R.L.Bruno in wheelchair and lady visitor…..and its raining ’cats and dogs’ outside]

“You’re not leaving the hospital,” she asked. “Yes ma’am, ” I muttered, desperate not to have a conversation.

“Who in their right mind would give you a pass on a night like this,” she said, her voice rising an octave.

“I’m going home,” I answered,

beginning to understand where she was coming from. She smiled immediately: “That’s just wonderful. How long have you been hospitalized?”

“I’m not a patient,” I said, “I work here.”

“Oh! ” she beamed, “isn’t it wonderful that the hospital gives its former patients jobs!”

Excerpts from Changing Your Life By Conserving Energy by Mavis J. Matheson MD.— A fellow Polio Survivor—Revised May 1995

The main principles of Conserving Energy include:

•doing what you most want to do

•planning activities for times when you have the most energy

•learning what your maximum work is and respecting the signs of fatigue you experience

•stopping before you become exhausted.

I think I have PPS. Why? Judge for yourselves.

Why will all the medical profession not listen. I may be getting older – aren’t we all – but I know my own body. My life style has been turned upside down and I know I had infantile paralysis in 1938. Why do I have to battle so hard for an answer?

‘Mystified’ ‘

Still mystified’ ‘Its all in your mind’ Fibromyalgia, No.

Then Polymyositis, No. Then Arthritis and Rheumatism, No.

We can’t get below the Polio Barrier, but PPS does not exist.

‘X-rays show definite Polio spine, you should not be walking upright’ ‘Did you really have Polio, maybe it was something else?’

The fact that I cannot cross my right leg over the left is immaterial. The fact that my left leg has collapsed under me three times in the last eighteen months is due to the fact that I have been overdoing it but I have only been out socially three times in the last four years because of the pain and exhaustion. The fact that I now have no control over my thighs and drop into a chair like a sack of coal is ignored. I am so frustrated. Why will the medical profession not believe me?

…..Why will they not listen to me and take all my symptoms into account? Why were the old medical records destroyed? Why does the diagnosis keep changing? Why can’t they give me a firm diagnosis for all my problems? When they do make a decision to give me some treatment how long do I have to wait before they tell my GP of their decision? Why is so much time, energy and money being wasted? Why do I have these symptoms, I have not been physically ill, this wasn’t gradual like just getting old, it happened overnight, I know its not just age, I have had this body a long time and I know how it feels.

[Ellen comments. This is still happening today 7 years later. The whole article is a good read for anyone still struggling to get a diagnosis for their symptoms.]

The following is part of a depersonalised letter which may be of interest – done at the suggestion and with the permission of Professor Richard L. Bruno PhD

You have been told that one had to have significant damage from the polio and muscle atrophy to have PPS.

Neither the severity of the original polio infection nor muscle atrophy, either due to the original polio or late-onset atrophy – are required for the diagnosis nor are predictors of PPS. The postmortem studies of Professor David Bodian of Johns Hopkins University in the 1940’s showed that anyone who had paralytic polio lost on average 50% of their anterior horn cells but required the death more than 60% to demonstrate any paralysis (Bodian D. Histopathological basis of clinical findings in poliomyelitis. American Journal of Medicine, 1949; 6: 563-578.)

What you should know about your Medications. A guide for Polio Survivors. [Part of full article]

Ask your doctor about potential side effects, particularly those that may increase or cause

∗ fatigue

∗ respiratory weakness

∗ muscle weakness

∗ dizziness and/or drowsiness which may impede your balance and cause

falls

∗ increase depression thus changing your perception of pain, making it

seem worse

∗ insomnia, sleeplessness, will increase fatigue

∗ vaso-constriction, may increase cold intolerance.

RESPIRATORY QUESTIONS Ask Wayne – Registered Respiratory Therapist.

Pulmonary Function tests

1. Will rule out or in, the reactive airways disease with tests specific to your flow

rates

2. This next one is superb for PPS’ers, the test normally done sitting in chair,

should be done while laying on one side, and repeated on the other. This is

because PPS’ers often have a paralysis of one dome of diaphragm, which can

be picked up with this type test (right side down testing, then same study

repeated on left side). If the results are markedly different, problems relating to

diaphragmatic excursion can then be pinpointed.

3. Arterial Blood Gases….Both at rest, and after exertion…..This will be the key in

factoring out the fatigue thing… Arterial Blood Gases gives information about

one’s ability to ventilate normally, at rest, and then under exertion. This test is

momentarily painful, because it requires sampling of arterial blood, usually but

not always from the radial artery… In other words it hurts like hell. This test is

done to check the adequacy of ventilation. In other words, oxygenation is not the

important thing here……..

4. In order to rule out oxygen deficiency, simpler oxygen saturation measurements

can be recorded. But again they should be done at rest…and then after exertion.

Finally, I would recommend a sleep study, but at a bona fide sleep center with holistic knowledge of PPS. In conclusion:

∗ Peak Flow Tests sitting, and repeated lying on both sides.

∗ Oxygen saturation at rest and following exertion.

∗ Arterial Blood Gases, both at rest and after exertion.

∗ And finally, a full blown sleep study connected to an EEG machine to

check frequency of REM sleep, or lack thereof.

Should pin point any and/or all of these components which could be your problem.

Question asked on the St. Johns Post-Polio-Med List

Is it possible to have PPS with an EMG that doesn’t show the patterns of polio on the unaffected side?

As far as diagnosing post polio syndrome with no definitive historical data to support an attack of paralytic polio, there are several alternative approaches.

∗ Exclude any known causes for your new symptoms other than post-polio.

∗ Do a careful exam of your affected and unaffected sides both clinically and

if necessary with an EMG including single fiber EMG to look for changes

suggestive of post polio.

∗ Observe you periodically for any signs of progression of symptoms

Energy Presents

I discovered that if I count my energy presents like people who are dieting count their calories and fat grams I have much less problem with fatigue. During this busy holiday I am sure all of us can use the reminder that we need to use our energy wisely.

Imagine yourself with a basket of presents everyday. In the basket are 5—10 presents. Each present is a Unit of Energy. As you go through your day you will use a present for every task you perform. When you take a shower and dress for the day you will need an energy present. If you run errands, for each place you stop may require a whole energy present just getting to and from the buildings. I have discovered for every 45 min I sit at the computer I use a present. If you prepare a meal that will take a present. Others may use more or less depending on your abilities and fatigue levels. Obviously it does not take long to use up that basket of presents in a normal day. So make sure that each of you use your gifts wisely. It requires rest (sleep) to refill the basket. Once the basket is empty there are no reserves and you must sleep to recharge and wait for the basket to refill.

Grace R. Young, MA, OTR, and Polio Survivor writes….

about muscles…

Even though you were told that you had “non-paralytic” polio, this doesn’t mean that you didn’t lose some motor units during the acute attack. It means that there was no clinical weakness. A muscle can lose as much as 50% of its motor units and still not show clinical weakness. However, the remaining motor units are working harder and longer. After many years of overworking, some of the remaining motor units start to give out.

about fatigue…

I think most of us can relate to delayed fatigue. We overdo on good days and then are sidelined for several. It helps if you can identify right when the fatigue starts and

stop for a rest before you reach the “point of no return” (easier said than done). Here are a few ideas:

1. Stop when you feel a little tired.

2. Decreased quality of movement. Stop if motions that are usually done

smoothly develop a tremor or become shaky.

3. Decreased quantity of movement. Stop if your range of motion declines while

you are working.

4. Stop if you start using compensatory motions

USING YOUR BODY EFFICIENTLY—Grace R. Young, MA, OTR

The basic principles of good body mechanics apply to disabled as well as nondisabled individuals. However, polio survivors have individual patterns of muscle weakness and unique ways of compensating, so there are no ‘cookbook’ rules that apply to everyone. Here are some general principles that apply to most of us.

…..SIT INSTEAD OF STAND WHEREVER POSSIBLE

• It takes approximately 25% more energy to perform an activity standing than

sitting.

…….USE MECHANICAL HELP FOR CARRYING

• Carrying objects changes your centre of gravity and can stress your arms and

overuse your leg muscles.

PAIN IN POST-POLIO SYNDROME – By C. Vandenakker, MD

CAUSES OF PAIN IN THE POLIO SURVIVOR Post-Polio Muscle Pain Overuse Pain

Biochemical Pain Bone Pain

EVALUATION OF PAIN—Thorough medical assessment.

MANAGEMENT OF PAIN – Therapies utilized

…medications… bracing….

behavioral modifications (pacing)..weight loss

avoiding the ‘pain cycle’

A lot more helpful information in this article.

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

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…. Lie down to rest so your back doesn’t have to support your body weight. Sitting takes 1/3 more energy than reclining…

PACING – ….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

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………

HINTS AND TIPS THAT MIGHT HELP YOU TO DIET

collected by Carole Lee

Dieting and not being able to exercise like we used to is difficult. Here are some day-to-day tricks and tips for dieting …

Set a reasonable goal…. Say “NO” to sugar, salt, and excess fat!….. Weigh yourself only once a week. … Fiber is important in your program..

Good sources: whole grain cereals, bran, wheat germ, fresh fruits and vegetables… Diet doctors insist on us having a good breakfast… Keep fresh fruit ready-to-eat in your fridge

Enjoy carrot sticks, celery sticks & other raw veggies with low-fat cottage cheese or salt-free peanut butter….

ROLLING ALONG – Grace R. Young, MA, OTR

Many of us who had polio were pushed to exercise vigorously and discard canes, braces, and wheelchairs as quickly as possible. The primary goal was to become “normal” and this meant casting off equipment and doing everything other people did. To us and our families, continuing to use equipment meant that we had not been “cured”. Therefore, it is not surprising that we feel a sense of failure if we have to start using wheelchairs or scooters or return to the equipment we left behind many years ago.

…. Canes or crutches may suit your needs when you’re at home or need to ambulate very short distances. However, using a wheelchair or electric scooter for longer distances or in challenging situations may actually prolong your ability to walk by preventing overuse of your legs. And there are other advantages to using wheelchairs or electric scooters instead of canes and crutches. [see full article]

Permission Giving: Emotional Adjustments and the Late Effects of Polio Karen Kennedy, MSW CSW, West Park Hospital, Toronto

All of us have encountered situations in life where we have had to seek permission from another person or group in order to complete the task at hand. If that permission is not forthcoming, our efforts may be thwarted and the task halted. In consulting my Collins Gem dictionary, I discover that the word permission means authorization, which in turn means to empower, permit or sanction. The word giving means elasticity and yielding. The word give means to bestow or confer ownership. The task at hand is the ongoing adjustment to life with new fatigue, pain, weakness and general changes in physical and emotional tolerance caused by the late effects of polio.

The ideas of permission giving and adjustments are inseparable. I would like to suggest that the idea of personal emotional permission giving is central to the discussion of adjustment to living with the late effects of polio. The emotional permission giver controls the answer. There will be times when the permission giver may not see the need or may refuse to see the need to give permission – permission to acknowledge reality and initiate purposeful change in order to manage the late effects, instead of being managed by them.

…Permission To Do What?

Make Changes: Give yourself permission to make changes. Acknowledge your new limitations and adjust your expectations of self. Consider how altering your lifestyle can help you maintain your independence……..

Set Limits: Dr. Margaret Backman, a psychologist in New York…. suggests that learning to set limits is key. Learn how and when to ask for help and how and when not to give help……

Ask for Help: Remind people if they need prompting. Don’t expect others to always remember or anticipate your needs……

Express And Be Heard: Openly express your needs, preferences and feelings….. …Outcome Of Withholding Permission.

•Increased frustration, anger and irritability •Increased pain and fatigue

•Stressed relationships

•Frustrated family members who are standing by willing to assist •Increased difficulty accepting suggestions or new ideas for coping •Energy wasted on fighting the symptoms instead of channelling energy to

adapt and take back control

•Fighting against the symptoms tends to increase their impact instead of

lessening them

•A survival mentality where there is no reserve energy left at the end of the day for leisure or life

•Decreased social involvement due to fatigue levels and a private approach to the polio issues.

…Support for Change. •Family and Friends

•Support Groups and Newsletters

AGING WITH POST-POLIO – Dr. Mavis Matheson [Polio Survivor]

……In order to feel young, we must adapt to the changes in our lives. Today, I’d like to talk to you about making life changes in general and to suggest some options for change in the five areas that are the most effective with the least risk. These areas are, relaxation, nutrition, values and goals, communication and appropriate exercise.

…Making life changes. Don’t base major life changes on the latest selfimprovement trend, magazine article, or TV advert. Do your research. Keeping an open mind is a virtue – but as the space engineer James Oberg once said – “not so open that your brains fall out.” Has it been tried with people like you? (If your nerves are burning out, a vigorous exercise program is not for you, no matter how much good it did those university age students.) Let someone else take the risk and find out what doesn’t work. Check your “downside risk” before making a change. What are the costs in terms of side effects, money, time and energy? What is the least stressful way to make the improvement you have chosen? The greater the risk to you, the more evidence you need that an intervention is likely to work.

…Set goals for change based on what you want out of your life. Your goals should be specific, measurable, realistic, and truthful. Make very specific changes one at a time. Once you have made a change evaluate it regularly. Feel good about what you are doing.

….What I did find was that the safest and most effective anti-aging interventions will also help with PPS symptoms. They are relaxation, good nutrition, working from your own basic values toward your own goals, improving communication skills and appropriate exercise.

1. Effective relaxation

I have considered marketing a pill to treat PPS. You would take it after lunch. Then you would have to lie down for 1 hour and relax completely. I am sure it would be a very effective treatment. It wouldn’t be better than placebo though. Polio researcher, Dr. Paul Peach pointed out that “Weakness and fatigue are the body’s way of telling polio survivors to rest.” Drs. Bruno and Frick of the Kessler Institute found that polio survivors who comply with treatment-pace activities, conserve energy, take two 15

minute rest breaks a day, and use assistive devices (a brace, cane, crutches, wheelchair or scooter) have up to 22 percent less pain, weakness and fatigue 18 months after therapy ends.

To treat your fatigue, you need to take time to rest. Nap (if possible) during the day, work fewer hours, and take longer vacations. Rest is the best known treatment for joint and muscle pain. Relaxation is the classic treatment for stress. The risks of relaxation are very small. There are no known side effects. It is free or at most the cost of a relaxation tape.

2. Nutrition and Vitamin-mineral supplement

Last October, Dr. Susan Creange, a research fellow at the Post-Polio Institute at Englewood (New Jersey) presented a study of diet in polio survivors. Dr. Creange found that, “Polio survivors often have a ‘Type A diet’: drinking three cups of coffee for breakfast, not having lunch and eating cold pizza for dinner. When they put polio survivors on a hypoglycemia diet, that requires eating protein at breakfast and small, non-carbohydrate snacks throughout the day, they had a remarkable reduction in nearly all symptoms of post-polio fatigue.”

The basic principles are:

• Eat a variety of unprocessed (and little processed) foods

• with high nutrient density

• in moderate amounts

• during at least three regular meals a day, including breakfast,

• with protein at each meal

• combined with smart snacking patterns (including beverages)

• while drinking at least six glasses of fluid daily, two of them water,

• and taking a broad-based vitamin- mineral supplement.

• I don’t recommend megadoses of anything!

There are a few other things I would like to suggest under nutrition. I recommend you decrease your caffeine intake so you can monitor your fatigue more accurately. I also suggest you use alcohol in moderation. Alcohol inhibits swallowing, interferes with nutrition, and causes falls and accidents. Alcohol at bedtime interferes with the quality of your sleep. If you smoke, QUIT. If you are a smoker, quitting smoking is the most effective anti-aging intervention you can make. If you don’t smoke, great.

3. Values & Goals Clarification

Once you clarify your own values, you can set goals within your strength or endurance limits, and avoid going repeatedly to that limit. By doing so, you can reduce the fatigue, joint and muscle pain, muscle weakness, and psychological stresses of Post-polio Syndrome. When you decide to clarify your values, begin by identifying 5 core values. A core value is an aspect of life that is particularly important to you. It may be something like being confident, learning, being creative, time with family, time with friends, exploring the world, success, helping others, laughing and enjoying, being in attractive surroundings, being independent, getting recognition or being challenged. Be honest with yourself about what matters to you.

Don’t get trapped into living someone else’s values.

4. Self affirming Communication

A satisfying long term relationship is one of the main determinants of a long and happy life. Good communication skills will help you to develop and maintain satisfying long term relationships. Self affirming communication means having the courage to reveal to others who you are and what you want, expressing yourself assertively and listening actively, and replacing self-defeating communication behaviors and styles with self-affirming communication skills. Self-assertive language is used when you say “I” when you mean “I”.

Another very important communication skill is giving and receiving feedback. When you give feedback, avoid value judgements by describing a situation. Be specific with your concerns. Report the impact of a behavior without judging the behavior. The best feedback is solicited, focused on things that can be changed, and immediate. When you are getting feedback, get more than one person’s feedback. Active listening is much easier if you frame the conversation. Try to set limits and impose structure on the information you are receiving. Recognize that disturbance takes precedence if you are not comfortable standing, stop the conversation by explaining you need to sit down, sit down, and then continue the conversation. Try to listen to both verbal and non-verbal messages. Recreate what you are hearing and play it back to the speaker.

5. Appropriate Exercise

Get enough exercise to prevent disuse atrophy, but not enough to produce overuse damage. Many survivors are prescribed or actually ask for the kind of physical therapy they had right after polio: exercising to the point of exhaustion. Several studies show that pumping iron will not increase the strength of muscles that are becoming weaker, and can actually cause an irreversible loss of strength.

‘Bit’ to make you smile

After a long and productive lifetime of hunching over her bubbling cauldron muttering incantations and concocting various enchanted brews, the wretched crone finally came to the realization that she was no longer in her prime. In addition to the pronounced dowager’s hump she had developed, her arthritic feet were an almost constant source of pain and torment for her. She could barely stuff her wrinkled toes into those pointed boots any longer.

One evening as she emptied her tote

sack onto her enormous chopping block and began the tedious task of mincing up a fresh batch of bat tongues and newt eyes, an idea suddenly dawned upon her. If she had a smaller, more portable cutting board, she might just as easily process these ingredients in her lap as she was comfortably seated beside her boiling cauldron.

“Ah, yes,” She muttered to herself. “It would be nice to be able to sit for a spell.”

~by Gary Hallock

http://www.topica.com/lists/CripHumor

To learn personal STRATEGIES FOR LIVING WELL To provide information and support

to families and friends of polio survivors and ventilator users To exchange ideas with polio survivors and ventilator users To exchange ideas with health professionals

To contribute to the worldwide activities supporting the improved health and independence of polio survivors and ventilator users

To renew old acquaintances and make new friends

Friday June 3rd 2005—3.15 to 4.30 p.m.

HOW SELF ASSESSMENT CAN HELP YOU IN OBTAINING BETTER CARE FROM HEALTH PROFESSIONALS

Hilary Hallam

Denise Carlyle, BA, MA, PhD, LRAM

Mary Kinane, BA, PGCE

Lincolnshire Post-Polio Network, Lincolnshire, United Kingdom

Reactor: Carol Vandenakker, MD

Physical Medicine & Rehabilitation, University of California Davis Medical Center

http://www.post-polio.org/conf9th/prog.html

Linc Pin Volume 5 Issue 2 Read More »

Linc Pin Volume 5 Issue 1

The Lincolnshire Post-Polio Information Newsletter Volume 5 – Issue 1 – December 2004

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

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

Post-Polio Syndrome (PPS) has been a recognized condition for more than 25 years, with reports of similar symptoms going back to the 1800’s. However we still do not have a grasp of the underlying cause, or causes, of PPS! We do not know how many polio survivors will develop PPS, estimates range from 20% to over 80%. We do not know why some polio

Seasons Greetings to All Our Members Their Families and Friends

survivors develop PPS and others do not. There is no diagnostic test and PPS remains a diagnosis arrived at after exclusion of other somewhat similar conditions. We do not understand why there is a lag time between recovery from the acute illness and development of symptoms severe enough to compromise the quality of life. It seems there is very little that we do understand about PPS. However, if we can discover the underlying cause(s) of PPS; if we can find out what is happening at the cellular and even sub-cellular level, there is promise of being able to answer all of these perplexing issues. There is also promise of being able to treat and possibly even prevent the onset of many, perhaps most, PPS symptoms.

(Continued on page 8)

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’

Post to Membership Sec, 78 Heron Road, Larkfield, Aylesford, Kent ME20 6JZ, UK

UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £10 a year. All UK Memberships payable by Standing Order – Forms from Membership Secretary.

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – February 2005

Articles for publication mid January by post or – newsletter@lincolnshirepostpolio.org.uk

Chair – Mary Kinane – mary.kinane@lincolnshirepostpolio.org.uk Secretary—Hilary Hallam—hilary.hallam@lincolshirepostpolio.org.uk Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Committee Member – Di Newman – di.newman@lincolshirepostpolio.org.uk

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Phone Team – Leader Di Brennand, Pat Hollingworth, Margaret Edmonds, Judy Barter Lincolnshire Post-Polio Network WebSite Administration

Chris Salter – netadmin@lincolnshirepostpolio.org.uk

CONTENTS.

PAGE 1, cont pages 8—11 Post Polio Syndrome and Inflammation By Life Member Marcia Falconer, PhD.

Page 2	Contents and Contact Information.
Page 3	Editorial by Hilary Hallam
Pages 4 Pages 5 to 7 Page 8 to 11 Page12	Message from the Chair, Mary Kinane.Further Report from our AGM.Continuation of Front Page article.How to survive the Holiday as a PPSer by Ellen Riddle.
Page 13 Page 14 to 19 Pages 20 to 21 Page 22 to 23 Page 24	Hints. Tips and Bits 1Understanding Muscle Strengths with Sophie Chun MDHints, Tips and Bits 2Exercising your Brain by Richard Daggett.Hints, Tips and Bits 3.WE WOULD LIKE TO THANK THE FOLLOWING FOR DONATIONS RECEIVED TOWARDS OUR WORK.

Ewan Peddie – Jenny Rayner – Sylvia Fortune – Sheila Crampton – Kay Shipman Yvonne Liggins – Patrick Peacey – Olive Mowat – Irene Meade – Eunice Stone USA Robert Price – Linda Booth

We left the UK following a snowfall of some four inches and arrived in the USA at a temperature of 80 with hardly a cloud in the sky. It made me realise that with a membership spread as far as ours is that this coming Holiday will have a huge variety of celebrations, traditions and best of all meals and goodies. Therefore, let me wish you and your families all the best for the coming holidays and a healthy and happy new year.

Articles that we use in our Newsletters. The comment is sometimes made that articles that come from someone in another country are not relevant to your problems in your country. Our membership are served by a variety of health care systems and local services. Regardless of country finding services for polio survivors where the health professionals have a thorough understanding of polio, PPS and our problems is not easy. There are around the World a few excellent Clinics and Health Professionals. However, very few of our membership have access to these because they are too far to travel to in time and cost. Whilst we cannot cover the differences in the health care systems, the problems being experienced are almost identical regardless of country. Articles, stories, problems, hints and tips are shared widely around the world of PPS Newsletters. What you write for us today might be appearing in an Australian newsletter in the Spring and an American one in the Summer,

In this issue we start with a very informative article by Life Member Marcia Falconer which is continued on pages 8 to 11.

Mary Kinane your new Chair writes her message and we report on the AGM afternoon speakers.

We have an article on voice and facial problems. Having met quite a few members I can say that to my knowledge six,

including myself, have such problems. Do let us know of your problems and hints and tips for coping with these so that we can share this information. One of our members would lose her voice for a couple of days each week following ’calling the Bingo numbers’. Did she give up doing this job she enjoyed? No, the NHS [UK National Health Service] provided her with a small microphone to be worn round the neck and a speaker. Now she no longer strains her voice she whispers the numbers and all can hear.

Another article relates to my old favourite ‘the strength of muscles’. This is written by Dr. Sophie Chun—who I have met in St. Louis, Dublin and Los Angeles. I am sure you will find this information helpful.

Exercising your Brain—is a great article written by Richard Daggett. I know Richard won’t mind my adding this here but many Polio Survivors jokingly say the one brain cell that I have working is not doing too well today. Well on the flight over I was reading a book and the comment was made…. He is such an idiot if he had one more brain cell he would be a PLANT! I laughed and wondered what plant would you say I was?

Member Ellen Riddle has come up with ten tips to help you enjoy the coming season and sent a couple of recipes that might make a difference for us in the UK. As a child we had Turkey Hot, then Cold, then Chasseured, then Curried.

Hints, tips, bits and funnies—why not submit items for future newsletters.

Date for your Diary. Next years Annual General Meeting will be in Lincoln on Saturday 22nd October 2005.

Finally, Our sincere condolences go to a very special lady, Pat Hollingworth, a long time member of our Phone Team, whose husband died after a period of illness in November.

Hello Readers,

It seems like yesterday when we were going to print with issue no. 48 of the LincPIN after our October AGM, and I was introducing myself as your new chair. I am certainly finding out that it takes some time to get to know the ropes, and trust that the membership and the rest of the committee will bear with me while I learn the various aspects of my new role.

We have some good news to report in this issue, thanks to the hard work of Sheila Dunnett who has been acting as administrative support to Hilary and the charity for some time. Earlier this year we were awarded a grant from Awards for All (which Sheila put a lot of energy into applying for) – this is to enable us to buy computer equipment. After dealing with what was a lot of paperwork, we are now in a position to invest in this new equipment to help develop our plans to deliver more presentations to more health professionals and the general public about the effects of post-polio, up and down the country.

Over the next three months, Denise Carlyle and I will be meeting up to work on our presentation-giving skills, sharing the equipment, and developing on some of the materials already put together by Hilary over the past number of years. Readers may remember that Hilary’s presentation to physiotherapists in the Grantham area has been most successful in gaining the interest of allied health professionals in that area. Most of our time and energy at our last committee meeting was devoted to sharing information on this very topic. We will of course keep you, the membership, posted on this development, but in the meantime ask you to be patient with us while we familiarise ourselves with both the equipment and the materials. Importantly, we are also developing a wider network of contacts within the NHS Trusts, so that we can disseminate information about PPS as widely, and effectively, as possible.

We warmly welcome our members’ viewpoints and would encourage you to let us know if you have contacts in your area whom you feel would be open to hosting presentations on PPS. We can only accurately reflect members’ interests here in the newsletter and in the organisation as a whole if we get your input and your feedback on these issues.

Hilary continues to put together the newsletter on a regular basis and we are working together to improve both the layout and the content to reflect readers’ interests and concerns. There are various ways of contacting us, which are all printed on the inside of the front cover. So please don’t be shy – write, e-mail or phone us!

May I take this opportunity to wish all our members and their loved ones the best of the season, and safe journeying to those who will be travelling.

Mary Kinane, Chair

For our afternoon speakers, after the AGM in Lincoln this year, we invited two members of the Patient & Public Involvement Forums (PPIF) in Lincolnshire. Both Carrie Sheils (Forum Support Officer) and Pam Gwynn (Patient Volunteer) gave us invaluable information about the work of the Forums, and those attending exchanged views on current developments in the area.

Carrie Sheils began by giving a short general talk on how Forums operate, and can operate, for local people. There are 572 Forums across England, each of which is fully independent, but works with, a local NHS Trust. Whichever service you may use, there is an independent PPI Forum keen to hear your views.

PPI Forums are made up of groups of volunteers in local communities in England (for more information about similar developments in either Scotland, Northern Ireland or Wales, please see the web-links below). These volunteers are enthusiastic about helping patients and members of the public influence the way that local healthcare is organised and delivered. Of interest to our polio readership, is that not only is Pam Gwynn a “Patient Expert” but she and her brother contracted polio as children, although her case was only mild. She welcomed and encouraged members to contact her and/or to get involved in their own areas if they were interested. All contact information is given at the end of this article. Forum members come from different backgrounds and have a range of experiences and skills. They are keen to take action where necessary.

PPI Forums can do the following:

∗ Contact local communities to find out their views on local healthcare

and present these views to the NHS Trust which they work with. By

law, all trusts must listen to the PPI Forum and provide a response.

∗ Independently monitor the quality of local health services through

regular visits. Reports of these visits will be given to the Trust and

made available to the general public.

∗ Look at how wider issues in the local community, such as social

care, transport or housing, affect health.

Forum Support Organisations (FSO’s) are “not-for-profit” organisations that have been contracted through a competitive tendering process to support PPI Forums. The Shaw Trust in Lincoln is one such FSO. These organisations, independent of the NHS, use their knowledge, experience and existing contacts within local communities to support PPI Forums. They are single organisations or consortia that play a vital role in helping to shape the future of health provision throughout England. They are managed on a geographical basis by nine regional centres.

(Continued on page 6)

Contacts in Lincoln:

The Shaw Trust, Voluntary Sector Hub, Beaumont Fee, Lincoln LN1 1UW: 01522 551 751. email: kirsty.regan@shaw-trust.org.uk , Manager Shaw Trust, or

carrie.shiels@shaw-trust.org.uk

Forum Support Officer, or Mrs Pam Gwynn (Volunteer Forum Member) on: 01522 691225.

All PPI Forums are commissioned by government, currently by the Commission for Patient & Public Involvement in Health (CPPIH). The PPIF for East Lincolnshire works in partnership with the East Lincolnshire PCT (Primary Care Trust).

A good website to look up to find a PPIH Forum in your area is:

www.cppih.org/ppi_find.php

We realise that there is a lot of jargon associated with developments in consultation with patients in England. However, we also wanted our readership in England to have a good overview of the “scene”, as it were, at this time in the health services, and to provide contact information where appropriate for people to add a voice in their own areas. It may well be that PPS’ers in areas other than Lincoln have already established good communication and working partnerships with forums in their areas, much like some are getting involved in the Long-Term Medical Alliance and the Neurological Alliance, either nationally or regionally (or both).

Mary Kinane – Chair mary.kinane@lincolnshirepostpolio.org.uk

(Continued from page 5) Further Report on AGM.

(Continued on page 7)

What do you call people who are afraid of Santa Claus? Claustrophobic.

Why was Santa’s little helper depressed? Because he had low elf esteem.

What’s the most popular wine at Christmas? “I don’t like sprouts!”.

Why is it so cold at Christmas? It’s in Decembrrrrr.

What nationality is Santa Claus? North Polish.

What do you call Santa’s helpers? Subordinate Clauses.

Why does Santa wear red underwear? He’s a man–he did all his laundry in one load

What does Santa Claus like to do in his garden? He likes to hoe, hoe, hoe.

I gave a short PowerPoint Presentation on the problems being experienced whilst we search for a diagnosis.

I explained that we have to ensure that the picture in our mind matches that of the person assessing us. If we are asked ‘Can you do an action? And we answer “Yes.” Do you think that the picture in the health professionals mind of how we are doing what they have asked is the same as the picture in our minds of how we actually do it?

The picture in the health professionals mind will be made up of how they see you at the appointment. Did you rest up the day before and get someone else to drive you to the hospital? Were you shown into a room to wait and the doctor came to you? Were you sitting down when he walked in? Dressed as you are now can he see any atrophy/orthotics/ evidence of polio? Apart from taking your history were you given a thorough or just a few physical assessments? Maybe you left your electric wheels outside in the waiting room, or even in the car if there was only a few yards to walk?

I know we are all very proud of what we can do and the last thing we want to do is to admit, even to ourselves, that we might be doing things a little differently from the expected ‘norm’ now. However, are we helping ourselves, our families, friends and health professionals by not ’seeing’ and giving up this information? Over the years, I have taken calls and emails from partners/family members worried about what they can see happening to their loved ones. “I offer to help when I can see they are tired but they always turn me down, what can I do?” The best advice we have is that you have to start talking firstly between the two of you and then gradually bringing in more family members/friends. Remember PPS does not just affect the life of the Polio Survivor but also all those they come into contact with. Most of us find that once we start talking a huge weight is lifted, we are alone no longer with our wonderings.

If you answered the question “Can you get up a flight of stairs?” “Yes” is the health professional likely to assume that you do it the same way he does, just walk up the flight of stairs without using the banister rail. When in fact you are going up right foot first, one step at a time, pulling yourself up with the banister rail and stopping halfway for a breather.

Think about how you do actions now and compare that to how you used to do them and ensure that you tell or show the person assessing you. You will be surprised at the difference it makes?

Why not make a list of the differences in your daily actions. Have you changed the way you do daily actions? Do you now….

∗ stand and lean against work surfaces to give you more support

∗ hold on to the work surface with one hand whilst you use the other

∗ slide the saucepans across the work surface instead of lifting them

∗ vacuum one room each day instead of doing the whole house once a week

∗ use an automatic gear box now instead of a manual because of new weakness in arm

or leg

∗ Sit on a shower stool and leaning forwards with your elbows close into your body wash

your hair instead of standing and using your arms above your head

REMEMBER— TRY ANSWERING ‘HOW YOU DO IT’.

Hilary Hallam – Secretary hilary.hallam@lincolnshirepostpolio.org.uk

(Continued from page 6)

Little research has been done on PPS, probably because polio survivors are a dying breed. After world wide eradication of polio, the ‘lifespan’ of PPS will be equal to that of the youngest living polio survivor. Or will it? Poliomyelitis continues to cause paralysis although now the virus causing the illness is not the polio virus but the West Nile Virus, or enterovirus 71, or one of several Coxsackie viruses. The nerve damage caused by these viruses is identical to that caused by the polio virus and therefore it is likely that PPS, perhaps by then called Post-Viral Syndrome, will continue to bring new limitations to survivors many years after they thought they had recovered.

So it remains important to examine the underlying cause of new muscle weakness, central fatigue, pain, memory and word finding problems and other symptoms that accompany PPS. Fortunately, current research in other areas holds great promise for explaining what is happening to so many polio survivors.

The cause of virtually all PPS symptoms can be explained by one word: inflammation! Front line research in the fields of neurology, immunology, physiology and virology is coming together and the many pieces of the puzzle are being laid upon the table. A good analogy is to think about a jig-saw puzzle. When you dump a 1000 piece puzzle out of the box, some pieces land right side up, others upside down. There is little hope of assembling the puzzle until you turn all the pieces right side up. The next step is to put all the straight edged pieces in a pile and then assemble the outer edge of the puzzle to give you a general outline. After this it is helpful to group pieces with similar patterns or colours together. This is

approximately where we are today in our understanding of how inflammation is related to almost all chronic diseases; PPS, MS, ALS, CFS, Parkinson’s, i r r i t a b l e b o w e l s y n d r o m e , arteriosclerosis and many, many others. This also gives you some idea of how far we have to go until we have a complete picture!

Let’s look at the puzzle pieces that seem to belong to PPS. Inflammation has two major causes; injury—including viral and bacterial infection, cuts, strains, operations, etc. and stress – including major events such as death of a relative, divorce, and job loss, but also including milder, repetitive stress that is encountered every day. In a person with PPS, when the body suffers an injury, such as physically overdoing by climbing too many stairs, walking on uneven ground, etc. the first reaction is for the cells in the affected area to release a chemical messenger. This messenger, called a proinflammatory cytokine, tells specialized cells, whose job it is to protect you from invading organisms, to come to the site of the injury. At the same time the proinflammatory cytokines activate resident cells and cells that have migrated to the injury and all of them produce more proinflammatory cytokines setting up a cascade of events that will involve the entire body.

Two proinflammatory cytokines, Interleukin-1 and Tumour Necrosis Factor-a, are especially important in triggering an acute immune response, the body’s first line of defense. The acute immune response involves developing a fever, fatigue, loss of appetite, sleepiness and other symptoms. It goes away within a few days. However if the injury is repeated often – say if a person with PPS persists

(Continued from page 1) – Post Polio Syndrome and Inflammation.

(Continued on page 9)

in exercising a stressed out muscle – then a chronic immune response will set in. This response to chronic stress involves the entire body including the brain and it will produce central fatigue, new muscle weakness, problems with short term memory and word finding, irritable bowel syndrome and other symptoms.

Recognize them?

Indeed. These are the post-polio syndrome symptoms we are so familiar with. In an effort to keep this article shorter than a textbook on immunology, I have omitted the complex chain of events that takes place in the body between the original stress and the onset of PPS symptoms. There are many, many research papers that amply document what happens in the body after activation of the immune system by proinflammatory cytokines and that eventually results in symptoms identical to those of PPS.

Let’s take a brief look at how proinflammatory cytokines may be the underlying cause of new muscle weakness. We begin with acute polio and the death of a large number of nerves whose job was to innervate muscles by telling the muscles to contract or relax and thereby allowing you to move a leg or an arm. If all the nerves leading to a leg or arm died, the limb was permanently paralyzed. However, clinical paralysis may be observed when 40 per cent of the nerve supply leading to a limb has survived. In many people, original paralysis or severe weakness eventually resolved, voluntary movement was restored and you could once again use your arm or leg. The body developed a neat trick to allow this to happen. The surviving nerves were able to send out ‘neuronal

sprouts’ to attach to and innervate muscles that had been orphaned when the nerve originally attached to them died off. Thus the surviving nerves were able to activate not only the muscle that they always innervated, but also surrounding muscles creating something called a “motor unit”. This repair was essentially stable for many years.

However 30 or more years after recovery from polio, many people begin experiencing new muscle weakness. Often the weakness is in the ‘good’ arm or leg. This may be due to the fact that the ‘good’ arm or leg was used more. Clearly something happened to the neuronal sprouts; either they no longer could maintain full time attachment to the motor unit or else they may have died off completely. This caused the appearance of new muscle weakness. Once again, I’ve simplified this a bit – although the general picture is correct. But this is a description of what is happening, not an explanation of why it is happening.

Enter proinflammatory cytokines. Remember them? Researchers have well established that proinflammatory cytokines cause cells to release neurotoxic proteins. These neurotoxic proteins can damage or even kill neurons by a number of mechanisms including changing the outer membrane of the nerve cell resulting in cell death or increasing reactive oxygen inside the nerve cell which also leads to cell death. It is probable that the neuronal sprouts, that have served so well for so long, are more fragile and may be the first target of proinflammatory cytokines in the central nervous system.

A very important fact is that nerve death only occurs in an activated immune system. The next question is “Do

(Continued from page 8)

(Continued on page 10)

people with PPS have an activated immune system?” The answer is YES! There have been a number of research papers indicating that polio survivors with PPS symptoms have an activated immune system while polio survivors who do not report PPS symptoms do not have an activated immune system1.

A very recent research paper2 looked at cytokines in people with PPS, polio survivors without PPS, people with multiple sclerosis (MS), a well known inflammatory neurological disease, and people who had no neurological problems. They found that people with PPS and MS have proinflammatory cytokines in their central nervous system while polio survivors who do not have PPS and people without neurological problems do NOT have proinflammatory cytokines in their central nervous system.

What might cause the presence of these proinflammatory cytokines in people with PPS? One hypothesis is the presence of very low levels of polio virus RNA hiding in nerve cells. This polio virus RNA is not capable of infecting you or other people, but is capable of t r i g g e r i n g t h e p r o d u c t i o n o f proinflammatory cytokines and with that, an underlying state of chronic immune system activation.

Other researchers have demonstrated a clear connection between the presence of proinflammatory cytokines and central fatigue3. Psychological stress – the kind that doesn’t involve overdoing physically – is perceived in the brain and the brain produces proinflammatory cytokines. This can cause profound fatigue, inability to concentrate and other symptoms4.

Remember that 1000 piece jigsaw

puzzle we have spread out on the table? We are now able to put together some of the same coloured pieces to make small pictures that are part of the larger picture. In the same way, we are piecing together what happens when a person with PPS experiences physical or psychological stress. We start to see small pictures and we can just begin to discern the larger picture coming together.

We are coming to the place where it may be possible to treat PPS symptoms using anti-inflammatory medications. A very exciting trial, using intravenous immunoglobulin treatment, is currently underway in Sweden. Preliminary trials of this treatment in people with PPS have yielded dramatic improvements in fatigue and muscle strength!5,6

Other treatments to reduce PPS symptoms may be based upon traditional anti-inflammatory medicines such as aspirin, ibuprofen, indomethacin and others. All treatments would have to be done under the supervision of your doctor, but in the meantime, there are some things you can do that are known to minimize inflammation in the body – and with that you might have a reduction of PPS symptoms. You might try meditation. Yes it works… if you do it consistently. Appropriate exercise, under the guidance of a knowledgeable physiotherapist, will definitely lower inflammatory cytokine levels. Pace yourself and don’t overdo. This is easier said than done but if you understand that seriously overusing muscles will start the proinflammatory cascade of events and with that bring on or intensify PPS symptoms, perhaps you will be able to justify resting before you go too far.

Adipose tissue – commonly known as

(Continued from page 9) Post Polio Syndrome and Inflammation.

(Continued on page 11)

fat – is also a producer of inflammatory cytokines. If you needed a good reason to lose weight, here it is. Finally there are a few things you can try. Drinking green tea encourages weight loss and it has neuroprotective qualities. There are also reports that undenatured whey protein may be beneficial. These things are probably not as effective as direct medication to lower proinflammatory cytokine levels, but as we incorporate them into everyday life, they will bring positive benefits.

And let’s keep working on that jigsaw puzzle!

References:

1. Dalakas, Pro-inflammatory cytokines and

motor neuron dysfunction: is there a

connection in post-polio syndrome? J

Neurolog Sci. 205:5-8, 2002

2. Gonzalez et al. Prior poliomyelitis-IvIg

treatment reduces proinflammatory cytokine

production. J Neuroimmunol. 150:139-144,

2004.

3. Patarca, R. Cytokines and chronic fatigue

syndrome. Ann NY Acad Sci. 933:185-200,

2001.

4. Black, PH. Stress and the inflammatory

response: a review of neurogenic

inflammation. Brain, Behavior and Immunity

16:622-653, 2002.

5. Farbu et al. Intravenous immunoglobulin

in postpolio syndrome. Tidsskr Nor

Laegeforen. 124:2357-2358, 2004.

6. Gonzalez et al. study in progress.

marcia.falconer@sympatico.ca

Reprint requests should be addressed to Marcia Falconer.

Marcia Falconer met Hilary online many years ago and became a Life Member. She also visited and spoke at our 2000 AGM. Here are just a few facts from her extensive C.V.

Polio history – Non-paralytic polio at age 7 (1949). Quarantined for about 1 month. Symptoms included fever, leg and back pain, weakness in both legs and right arm, also generalized weakness for a period of months followed by complete recovery. Led a very active life swimming, ice-skating and cross country skiing. PPS symptoms first noticed (in retrospect) in 1985 with fatigue, and leg weakness becoming severe by 1996. Received a diagnosis of “probable PPS” in 1997

B.Sc. in biology, Simmons College, Boston, Massachusetts USA. 1964.

Research Assistant in cell biology laboratory at M.I.T., worked with human tissue cultures, polio virus (strain 3) and various pesticides. 1964-1966

M.Sc. in plant cell biology, Carleton University, Ottawa, Ontario, Canada 1985.

Ph.D. in neuronal cell biology, University of Ottawa, Ottawa, Ontario, Canada. 1990.

Post-doctoral studies in molecular biology, Massachusetts Institute of Technology, (Center for Cancer Research), Cambridge, Massachusetts, USA. 1990-1992.

Co-author wit Professor Eddie Bollenbach MA in biology– also a LincsPPN Member.

‘Non Paralytic Polio and PPS’ A Lincolnshire Post Polio Publication January 1999.

‘Late Functional Deterioration in Non Paralytic Polio’

Am J Phys Med & Rehab Jan/Feb 2000.

Linc Pin Volume 4 Issue 12

© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 1
The Lincolnshire Post-Polio Information Newsletter
Volume 4 – Issue 12 – October 2004
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
MARY KINANE—CHAIR
Hello to our members and I would like to say
that I am honoured to have been nominated and
voted in as chairperson of the Lincolnshire PostPolio Network. As many of you already know, I
have been active with the Network for a number
of years, helping with e-mail enquiries and
taking on committee responsibilities.
In Lancaster, where I live, I am actively involved
with local disability groups, in an on-going
consultation process aimed at achieving
improved services for those with disabilities in
the Lancaster, Morecambe and Lune Valley District.
I also do diversity training locally, assisting in
(Continued on page 3)
Rolling Right Along
By
Polio Survivor
Dorothea
Nudelman
Page 10
Co-author of
Healing the Blues© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 2
Lincolnshire Post-Polio Network – UK Registered Charity 1064177
Donations large and small towards our work are always welcome.
Lincolnshire Post-Polio Network,
69 Woodvale Avenue, Lincoln, LN6 3RD, UK
Tel: +44 01522 888601 Fax : +44 0870 1600840
[Do not dial first 0 if ringing from outside the UK]
Membership Information
Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec.
Please make all denomination cheques/checks payable to ‘Lincolnshire Post-Polio Network’
Post to Membership, 78 Heron Road, Larkfield, Aylesford, Kent ME20 6JZ, UK
Membership Secretary Robin Butler – membership@lincolnshirepostpolio.org.uk
UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £10 a year.
All UK Memberships payable by Standing Order – Forms from Membership Secretary.
Overseas Newsletters by Airmail.
European Membership – LM E300 – Member E25 a year.
USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year
Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.
Next LincPIN Newsletter – December 2004
Articles for publication by 15.11.04 by post or – newsletter@lincolnshirepostpolio.org.uk
Chair – Mary Kinane—mary.kinane@lincolnshirepostpolio.org.uk
Founder and Secretary—Hilary Hallam – hilary.hallam@lincolnshirepostpolio.org.uk
Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk
Committee Member – Diane Newman—diane.newman@lincolnshirepostpolio.org.uk
Phone Team – Leader Di Brennand – di.brennand@lincolnshirepostpolio.org.uk
Phone Team – Pat Hollingworth, Margaret Edmonds, Judy Barter
Lincolnshire Post-Polio Network WebSite Administration
Chris Salter – netadmin@lincolnshirepostpolio.org.uk
CONTENTS.
Front Page to page 3 NEW CHAIR—PROFILE by Mary Kinane.
Page 4 Editorial
Pages 5 to 9 Review of book Out of Sight –
The Experience of Disability 1900 – 1950
Page 9 Things to make you smile.
Pages 10 to 13 Rolling Right Along by Dorothea Nudelman
Page 13 More things to make you smile.
Pages 14 to 19 Article on PPS from AWAKE!
Page 20 Article on Anaesthesia by Prof. Selma Calmes.
Page 21 Competition.
Page 22 to 24 Travels with a Wheelchair.
Alan Russell visits Vienna—May 2003
GRATEFUL THANKS FOR THE DONATIONS RECEIVED FROM
£100 donation in memoriam of Life Member Hal Foster,
Barry Branston, John Finley, Joy Witheridge, Janet Marsh, Vivien Holland,
Dr. George Airey, Ewan Peddie, Jenny Rayner, Sylvia Fortune,
Leonard Reeves-Hall, Winifred Hyam, Anne Wood, Ann Telford,
Maureen Chapman, Victor Gabriel, Heather Chadwick, Anne Williams,
Eunice Stone, Elizabeth Doublet, Barbara Bradley.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 3
contributing to a better understanding of
disability issues in my area, in relation to
the movement for Independent Living,
civil rights and the move towards an
understanding of the social model of
disability. I am a service user
representative with Leonard Cheshire
Care Services, representing issues
which service users bring up with regard
to their care and the quality of the
services provided, as well the policies
and practices which guide the delivery
of services.
We are an international organisation,
with a good image and a good
reputation, mainly perceived through the
good quality of our website – thanks to
the hard work of Chris Salter. Our
outgoing chairperson and founder,
Hilary Hallam, has spent the best part of
nine years in developing the Charity and
it is hoped that my moving into the role
of chairperson will give the organisation
a dimension of added strength, which
we need at this time. We need not only
to keep our work going, but to improve,
and we have made a number of funding
bids to the Department of Health
(Section 64 funding) to enhance our
presentation materials and skills so that
we can bring awareness of PPS more
readily to health professionals, as well
as eventually to pay a part-time
administrator.
The committee will continue to maintain
the close working relationships that we
have with members whose voluntary
work in the following tasks is essential to
our success: newsletter layout,
newsletter distribution, telephone help
and information, production of
information leaflets about PPS for
PPSers and health professionals,
financial and clerical advice and
support, web administration and
ongoing web re-build, to name some of
the essential areas. All of the following
people contribute their time freely and
enthusiastically in these areas: Chris
Salter, Robin & Pauline Butler, Jenni
Paulger, Sheila Dunnett, Barry & Olivia
B r a n s t o n , D i B r e n n a n d , P a t
Hollingworth, Judy Barter and Margaret
Edmonds. Also of value are all the
people who willingly network between
LincsPPN and other organisations in the
UK and beyond, with the British Polio
Fellowship, the Post-Polio Support
Group of the Republic of Ireland, PostPolio Health International, The
Neurological Alliance, the Long-Term
Medical Conditions Alliance, Leonard
Cheshire, and with various other groups
worldwide. In a world which now
a p p e a r s s m a l le r d u e t o t h e
advancement of internet technology and
the exchange of information, polio
survivors can communicate across
continents and we can continue to
promote important efforts to support
polio survivors in the “developed” world,
as well as fight to eradicate the
possibilities of future polio epidemics in
“developing” countries. If you or
someone you know would like to be
more centrally involved in the work we
do, I would very much like to hear from
you. You can contact me, or any of the
committee, via our e-mail address, our
snail mail address or telephoning us –
all contact details are to be found on the
opposite page of this edition.
Many thanks for your continued support
and I look forward to your views. In
future editions we will be continuing to
invite members and non-members alike
to contribute new material for the
newsletter and to make suggestions
about how best to improve the Network
and the newsletter to represent your
views and your interests.
Best wishes, Mary Kinane
mary.kinane@lincolnshirepostpolio.org.uk
(Continued from page 1)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 4
Editorial by Hilary Hallam.
I would like to welcome Mary Kinane to the
post of Chair. Nine months after finding
PPS existed—I gave ‘birth’ to the
organisation we now know as the
Lincolnshire Post-Polio Network. ‘She’ is
nine now and its time for Secondary
School and a new ‘headmistress’. As you
will have seen from Mary’s profile she also
gives up much of her available time and
energy to trying to make a difference for
folks who are less-able.
PPS changes ones life, especially if you
go undiagnosed and wrongly advised for
many years. From working full time plus
voluntary work to fighting for and
managing on benefits is a hard knock to
the system. The folks with PPS that
work—and have worked—for the
Lincolnshire Post-Polio Network over the
years have all given up some of their
available and very valuable time and
energy to help promote the awareness of
the condition. I would like to take this
opportunity of thanking you all.
The LincPIN’s contain a variety of articles.
Some are sent to us, some we find
ourselves, some we ask folks to write for
us. This is issue 48—that’s a lot of
information.
Our main aim is to promote the awareness
of PPS. One of our members sent us a
copy of their AWAKE! Magazine which
contained an article on PPS. I was
amazed to learn that this magazine has an
average printing of 22,530,000 copies in
87 languages. That is a massive number
of people who will now be aware that the
condition exists. This article states in grey
shaded text box on page 17 ‘A confirmed
diagnosis of paralytic poliomyelitis in the
past’. Since 2000 we have used the
criteria added in the adjacent box and
information on the levels of nerve damage
relating to the diagnostic name. I have
also followed this article with details of
publications on anaesthesia and reprinted
Prof Selma Calmes info on page 20.
Selma is a polio survivor.
I got a book from the library, and as a polio
survivor age 5 who remembers nothing,
found the information by polio survivors on
their experiences an eye-opener. I
compiled a review of this book Out of Sight
– The Experience of Disability 1900 –
1950. Pages 5—9. We welcome your
comments and experiences.
Dorothea Nudelman is the author of the
article ‘Rolling Along’ on pages 10 to 13.
Doro is a Professor of English and a Polio
Survivor. When she learned about PPS
she became depressed and courageously
co-wrote the book ‘Healing the Blues’
Drug-Free Psychotherapy for Depression
with David Willingham MSW. This is
written in two personal voices, patient and
therapist, this is the gripping story about
the depression of a brave woman who
faced her own despair and transformed it
into a creative renewal of her life.
HEALING THE BLUES is also a
guidebook to a drug-free approach to
healing depression. Depression robs us of
the enjoyment of life. Increasingly, drugs
are seen as a quick solution. This book
suggests an alternative approach:
“Listening to the depression” for what it is
telling us about our life. What’s not
working? What needs to be understood
and changed? See page 13 for info.
We finish with another article by Alan
Russell on their visit to Tunisia. We have
just received an article from Alan and
Margaret Lever about their ‘wheelie’ visit
to Tunisia—next issue. Why not tell us
your experiences of holidays.
Which reminds me—huge hugs to Lynn
Hobday who is in hospital after breaking
her leg. We all send our best wishes for a
speedy recovery.
Ellen will be back next issue.
Christmassy items from around the world
would be welcome for the next issue.
Please enter our Competition on page 21© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 5
A Review of the Book
Out of Sight
The Experience of Disability 1900 – 1950
By Steve Humphries & Pamela Gordon
A Channel Four Book.
ISBN 0 – 7463-0642-3
Compiled by Hilary Hallam
The experience of physical disability in
Britain during the first half of the century is
almost completely undocumented. We have
little idea how it felt to be officially
classified as blind, deaf, or crippled and be
brought up in the harsh Dickensian
institutions and special schools where so
many children were sent. We know even
less about how the great mass of disabled
children who escaped an institutional
upbringing coped at home, in hospital, at
school and in the streets. During the Second
World War however there was a dramatic
but temporary change in the economic
fortune of disabled people – an
extraordinary story which has never been
properly documented. More than a quarter
of a million were recruited into full time
employment – often into skilled and
responsible positions – to do jobs vacated by
those who had joined the armed forces.
The aim of this book – and the television
series it accompanies – is to begin to fill this
important gap in our social history, by
providing the first ever account of the lives
of men and women who are physically
disabled. Till now there has been no serious
attempt to allow disabled people who grew
up in the first half of the century to speak
about attitudes towards them, about their
hopes and fears, their ambitions, their loves,
their disappointments and their struggles.
This book looks at the lives of ‘ordinary’
disabled people.
Between the 1900’s and the 1950’s the great
majority of physically disabled people in
Britain were under fourteen years of age.
More than half a million boys and girls had
rickets, polio, tuberculosis, cerebral palsy,
seriously impaired vision, deafness or a host
of other disabilities.
The following excerpts all relate to polio
survivors.
Elise Cooper was brought up in Ponders
End, North London, the youngest of thirteen
children. She had polio when she was just
over a year old. As she grew up the
authorities wanted to put her into an
institution. Her father was a foundry man at
the local factory and he resisted.
When I was nine the authorities where I
lives wanted to send me away to a special
institution. They told my dad that it was the
only place I would be fit for. But my dad
found out that this place was just for
mentally handicapped kids. I would have to
go there to live, goodness knows how long I
would have been locked up there fore. But
anyway my dad said ‘no’. He refused point
blank, said I wouldn’t learn anything there
and that I was brighter than some of my
brothers who went to the local school. It was
only thanks to him sticking his heels in tat I
wasn’t packed off there for good.
Olive Hall, born in 1923 in South Shields,
contracted polio when she was only a few
months old. Her father was a teamer at the
local shipyard. He and Olive’s mother were
determined to do the best they could for
their daughter.
After I got polio my mum and dad used to
carry me to hospital every day for the hot
baths treatment. I had them every day for
three years. But I don’t think it was much
good. Nothing happened. Mum and dad just
tried to do anything that they could manage.
There wasn’t any other help for me. The big
strike was on at that time so it was tough for
us all. Mum used to scrub floors in a
laundry to buy me proper food and to be
able to keep taking me to hospital for these
baths. She even pawned her engagement
ring in the end, the little bit of something she
(Continued on page 6)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 6
had of her own. That was so I could be sent
into hospital to get an operation they said
would put my foot right. But it didn’t work,
just the opposite. I ended up with it worse.
All deformed and the ankle bone all on top
of the foot. My parents were trying to do
their best by me but it was useless.
Hilda Donnelly was born in 1914 in
Hartlepool. Her father was fighting in the
First World War and so when Hilda
contracted polio at the age of one and a half
her mother had to cope alone with only the
help of her neighbours.
When I got polio I was really ill and my
mum had to get the doctor out to me. He
came and said what I had but then he never
seemed to bother after that. Mum couldn’t
afford to send me into hospital and so the
doctor left it up to her to care for me. I
remember screaming whenever the
bedclothes touched my legs at first. She was
so worried about me. But all our neighbours
were very kind. They all had remedies that
they told mum to try on me. Anything that
might make me even a little better, I got.
She gave me Dr. Castle’s tablets, they were
a health tonic. I took them for years. I got
Scotts Emulsion from one woman in the
street. Another man used to bring two
buckets of sea-water up from the shone
every morning. Mum would heat it up and
bath me in that. Then they massaged my
legs and back with olive oil. She tried
absolutely everything to make me walk
again.
Muriel Faulkner was born in 1902, the
daughter of a general labourer and she
contacted polio in 1904. Her family lived in
the village of Bronesberrow Heath near
Ledbury.
They kept you where people couldn’t see
you. They kept you out of sight. After I‘d had
my polio my parents didn’t really let me out
much at all. I was never allowed to walk out
with the rest of our family because of how I
looked with my limp and all. Sometimes they
used to take all the other children on the
horse and cart to a show in another village.
That was a real treat but I was never
allowed to go. I was usually sent to my
gran’s whilst they all went off. It was as if
they were ashamed of me and even as a
child that made me feel awful.
Kenneth Matthews, born in 1923, had
suffered polio when only months old. He
started elementary school along with the
other children in the Welsh town of Seven
Sisters.
I was turned six when I went to school but I
done very well at school. On my first day the
headmaster called all the boys into the
assembly hall. He explained to them all
about me, what I’d got and what I’d been
through. He sort of put them on their guard
against banging me or bumping into me in
the playground. I had to wear a black sling
too so as they would all know which arm
was the bad one. It was all skin and bones
really because the muscles had been eaten
away like. It was good that they all knew to
take care of me. But I soon settle in and
after a bit I made friends and got into scraps
like all the other lads. I was a real good
one-handed scrapper in the end.
Olive Hall had contracted polio when she
was twelve months old which left her unable
to walk for many years. But at school she
found that she was expected to do all the
same sports as the other children with no
consideration for her special needs. On one
occasion this harsh and uncaring attitude
almost lead to disastrous consequences.
I just had to get on with it at school. Nobody
would let you off anything just because of
how you was. Every Tuesday we were all
taken swimming. The cubicles were all
along the side of the baths I remember. Well
one particular day we had our swim, it was
(Continued from page 5)
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quite a long time to be in the water and
some of the girls could swim very well. Of
course I was weak because of the polio so I
got tired easily when I did exercise. Then the
teacher told us all to get out and change.
She blew a whistle, I remember hearing that
and I tried to get out of the deep end but
then all my strength left me and I started to
slide down, back into the water. All the
water rushed inside me and I thought, this is
it. But nobody noticed, none of the teachers
even. After my friend Vera had got changed
she went to tell the teacher I hadn’t come to
line up. Everybody thought that I must be
larking on somewhere but the one of the
girls spotted what looked like a dirty big
rag on the bottom of the baths. It was me.
One of the older girls jumped in and got me
out. I was black and blue all over so they
told me and the hospital told my mother I
was lucky to be alive.
There was little resistance to this harsh
treatment of children with disabilities. The
children themselves were usually too
isolated and frightened to protest about any
unfair treatment they felt they received. The
only protests likely to happen were ones
initiated by the parents, usually after a
disabled son or daughter had been badly
upset at school and had reported the incident
at home.
Alice Maguire, born in 1909 in Croxton,
Norfolk contracted polio when she was
eight. Although she had severe difficulties in
walking she recovered sufficiently to be able
to attend the local school.
One day one of my friends picked me to do
monitor duty with her in our class. But the
teacher said to us in front of all the other
children, ‘She’s not being a monitor, I’d
rather see a pin hopping around the room
than see her.’ She meant because of my bad
legs and the way I walked. I went home very
upset. Then that evening some of the other
mothers and children came around to our
house. They’d all heard what the teacher
had said to me. Well, next morning, there
was a riot at the school! My mum and some
of the others went down and complained to
the teacher. They shouted at her and really
told her what they thought. And she left the
school that morning. I don’t know where she
went. She disappeared for a week and when
she came back she completely ignored me,
never spoke to me again.
The feat engendered by surgery and medical
experimentation was greatest in long stay
hospital wards. Thousands of disabled boys
and girls spent long periods of their
childhood as hospital patients. Here the
enforcement of strict institutional discipline
and a mistaken belief in the complete
immobilisation of some patients meant that
occasionally children were not allowed to
move at all in or from their beds.
Susan Miller contracted polio in 1921 when
she was just a year old. She was sent straight
into hospital from her home in Chiswick,
West London. Susan was to remain in
hospitals until she was twenty-one years old.
From the age of five until I was thirteen I
was encased in a plaster cast, rather like an
Egyptian mummy in the children’s ward of
the Royal Sea Bathing Hospital in Margate.
Whenever the little girl in the next bed to
me wanted to play ‘dollies’ I undid the
straps that were meant to keep my arms still
and joined in with the game. But if the nurse
ever saw us, and she mostly did, she
thundered down the ward, yelled at me, put
me back in my little coffin and tied my arms
and hands down with bandages to the sides
of the bed really tight. It was like being
crucified flat. There were so many times
when I wanted to play and talk and I would
wriggle and accidentally break bits off the
cast. And this would mean that I had to be
re-plastered. The nurses got really furious
and they would quite often wheel me, bed
and all, into the cold, wet bathroom as a
(Continued from page 6)
(Continued on page 8)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 8
punishment. And I had to cry myself to sleep
to the sound of a dripping tap.
Unemployment brought absolute poverty for
many disabled people. Dependent on parish
relief for their survival, many gravitated to
the poorest, cheapest slum streets in the big
cities. Here there was often a concentration
of disabled men and women living in rented
tenement blocks or cheap lodging houses.
Len Tasker who had polio entered a similar
world of poverty and deprivation in
Coventry when he left hospital at the age of
nineteen in 1934.
When I first came out of hospital I thought it
would be all rosy and that my life would get
started then. But all I saw was poverty all
around. Lots of disabled men begging in the
streets, selling reels of cotton and matches
and things like that. It was the thirties and
there were no chances for the disabled then.
I was totally dependent on my brother and
his wife for money and food. There was
nobody who would give me a job. I couldn’t
get any social benefits because I didn’t have
any insurance stamps because I had never
worked with being in hospital. You had to be
working, twelve months before you could get
means tested for unemployment benefit so I
was caught in a hole. If it hadn’t have been
for my brother working then I would have
been on the streets. As it was there was
never enough to go round the three of us. I
felt so useless but I couldn’t’ get a job. I’d
never been trained for anything. I did a bit
of handicrafts, making duchess sets for the
neighbours and getting orders from them for
a bit of pocket money. In the end I got a job
peeling potatoes in the local fish and chip
shop. I was so pleased to get a few pennies
even though it was such long hours and
boring work. I had to keep it a secret from
my brother, what I was doing. He would
have been angry if he’d have found out
exactly what my job was. But I was so
desperate for insurance stamps that I would
have done absolutely anything.
The strong disapproval of disabled people
having children which was reinforced by
Eugenics ideas during the early part of the
century continued, though in a diluted form,
into the 1950’s. The idea of disabled people
coping and succeeding as parents was for
example represented in fifties newsreels as
something quite extraordinary. But some
defied the prejudices of the time. For them
parent hood was often especially fulfilling.
Betty Holland, who had polio, married a
seaman in 1934.
His mother was awful. She used to be really
nasty to me and said that he shouldn’t marry
me because I wouldn’t be able to manage a
house or cook meals and keep him
comfortable because of my disability. She
really wanted him off me but luckily for me
we were dead set on marriage and she
couldn’t stop us after all. And we managed
perfectly. My husband used to help me with
the things that I couldn’t do and it all rolled
along well for us. His mother was still
horrible to me. She said that we would never
be able to have children and that especially
hurt me because I was hoping for a baby
and I knew that my husband wanted to be a
father. But I was determined to go as if
nothing was wrong and just hope that a
baby would come. I was over the moon when
I got pregnant. And my little girl was all that
we could have wished for.
In the last ten years [1992] there has been a
growing awareness amongst disabled people
that they have been – and still are – denied
basic human rights. At the heart of this
transformation in the understanding of the
nature of disability has been the rise of the
disability movement. This movement has in
turn been driven by the emergence of a
number of organisations controlled and run
by disabled people themselves. The central
concern of this movement is the individual
(Continued from page 7)
(Continued on page 9)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 9
and collective empowerment of disabled
people. It challenges the dominant
perception of disability as medical illness or
personal tragedy and focuses instead on how
society systematically handicaps disabled
people. This new perspective also
challenges the conventional wisdom that the
history of disabled people in our century is
one of general progress and improvement in
their social condition. Histories written from
this viewpoint should provide many new
insights into the recent history of disabled
people. We suspect that research into the
experience of disability since the 1950’sabout which remarkably little is known –
may discover striking parallels with the
experiences that we have documented earlier
in the century. Certainly our conversations
with younger disabled people suggest that
they share much in common with those
brought up before the last war. Patronising
and hostile attitudes by the able-bodied and
a refusal to recognise the rights of disabled
people have shaped the experience of
disability throughout the twentieth century.
Compiled by Hilary Hallam.
(Continued from page 8)
Two show stallions are arguing over who
should take best of breed.
The first says, “I’ll grant you are the closest I
have ever seen to my equal, but my legs are just
a bit straighter than yours, and, you know, the
legs are of prime importance.”
The second horse says, “I’ll allow your legs are
just a bit better than mine, but mine are the legs
I was born with. I know for a fact you had
thousands of dollars of corrective work. Your
foals will inherit your natural legs, not your
genius farrier!”
The first horse mulls this for a moment, then
says, “You’re right. I stand corrected.”
– – –
Now I have a “shoulder impingement” and
getting physical therapy for that. The therapist
gave me exercises, too.
“Have you been doing the exercises?” he asked
me. “Yes. Religiously!'”
The PT tried electrical stimulation of the
shoulder. I think it’s called a tens unit. So she
puts the patches on, starts the machine and asks
me to tell her when I feel a tingle. Just as that
starts I say “OK. I can feel it,” and “Say, is this
going to interfere with my pacemaker?” [Note:
I do not have a pacemaker!]
Well, its only fair. She stimulated blood flow to
my shoulder, and I stimulated blood flow to her
heart…
Doris’ service dog Mesa was in a deep sleep
and moving her feet because she could hear all
kinds of animals talking in her head. Nothing
really for concern. Doris and Mesa had spent 6
hours at the amusement park and Mesa was
having Disney spells.
– – –
A blind man walks into a store with his seeing
eye dog. All of a sudden, he picks up the leash
and begins swinging the dog over his head. The
Manager runs up to the man and asks,
“What are you doing?!!” The blind man replies,
“Just looking around.”
– – –
“I can’t wait to go to Grandma’s for
Thanksgiving. My cousin’s going to be there,
and he has three feet!”
“Wow! How’d that happen?” “I don’t know. My
aunt wrote my parents and said, ‘You won’t
recognize little Rubin, he’s grown another
foot!'”
– – –
A man with a wooden leg wanted to buy fire
insurance for his leg. The first actuary quoted
an annual premium of $500, estimating that the
leg would burn once in 20 years and the value
of the leg is $10,000.
The second actuary quoted an annual premium
of $50. When the second actuary was asked
how he arrived at such a small figure, he
replied, “This situation is right here in the fire
schedule rating table. The object is a wooden
structure with an upper sprinkler, isn’t it?”© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 10
A friend of mine who is perfectly ablebodied has turned napping into a high art
form. When she visits for an extended time,
she often takes several naps in the course of
a day. She laughs about it, but I find when
she’s here I nap more and enjoy myself
more too! At such times, I never think of
napping as a PPS issue—deep fatigue. It’s
just something I do that energizes me for
hours afterwards. I’m beginning to learn that
as more polio losses come I have to continue
this massive exercise called “taking care of
myself” in body, mind, and spirit.
The practical aspects of adjusting to the
post-polio losses of strength and mobility
are in themselves awesome. For some of us
it means using a wheelchair for the first time
or being fitted for a brace. For others it
means substantial loss of endurance,
increased pain, and chronic fatigue. Many
experience a combination of the above. No
matter how much we try to anticipate our
own needs, I think it’s natural to feel
surprised and even discouraged when loss
actually happens. From my perspective,
having suffered depression, it is essential
that we address the emotional aspects of
these changes as we experience them.
Moving beyond discouragement or
depression frees us to fully enjoy the lives
we have.
As many of you know from my book
Healing The Blues, I was initially resistant
to dealing with the onset of new polio losses
in middle age. Now, in my mid-sixties, after
yet another new home and new community,
I have had to cope with more severe losses.
After walking with crutches and braces
since age ten, I have recently joined the
ranks of the “vertically challenged.” This
has been a major and challenging change as
many of you understand. But continuous
work on my attitude and feelings has helped
me to “spit back” at anyone who looks at me
as an object of pity. For me, pity is a death
knell signalling the loss of hope, humor, and
belief in myself.
Nevertheless, the world looks different from
here. Always having to look up to make eye
contact can feel diminishing; and for the
person who is standing, it is often easier to
dismiss, patronize, or ignore the person
sitting. “If she needs to use a bathroom,
there’s an accessible one just outside
Gallery 5.” Hearing oneself addressed in the
third person is very strange indeed!
For years I had wondered if I would ever
have to use a wheelchair except for trips to
the bathroom during the night. Further, I’d
wondered how I’d make the decision to do
so since a tiny part of me always hung onto
the conviction that sitting down was “giving
in.” Hard to believe I still wanted to hang
onto the hope that this would never happen,
that I’d be spared “the chair.” You’d think I
were being sentenced to the “electric chair.”
So the practical aspects of confronting and
evaluating whether I’d have to use a chair
were deeply tied to my attitude towards
doing so.
Twenty years ago when my husband and I
built our first house, I didn’t have a clue
about how new physical losses would affect
my mobility. When we moved recently to
our present northern Sierra foothill location,
I was still walking but had come to rely
heavily on my electric scooter to get around
outdoors and to manage the hilly terrain of
the streets in town and on our country
property. With growing awareness, we built
our new home with all of the practicality
needed to accommodate me in a wheelchair.
Building wide hallways and doorways in a
single level living area were obvious. We
installed grab bars in every bathroom and a
“drive-in” shower with transfer seat in the
master bath. We lowered the mirrors and
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built a wheelchair friendly cutout in the
vanity counter as well. In the kitchen, we
designed an island with clearance on all
sides for my chair. There is also a lowered
butcher-block tabletop at one end of the
island that I use as a meal prep area. I
installed a wall oven at a lower than
traditional level so I could function
independently while cooking. In the laundry
room we raised the front-loading washer and
dryer so they would be accessible whether
standing or sitting. Almost everywhere in
the house there are lower level built-ins
instead of overhead cabinets so there is
plenty of convenient access.
At the front door are a roof overhang and a
front porch so that the gently sloped (stair
free) entryway is navigable in a wheelchair,
protected in inclement weather, and gives
easy access to guests. Repeatedly, it strikes
me how appropriate the phrase “universal
access” is since so much of what is
necessary for persons with disabilities is
convenient and appealing to others.
When we finally moved in, last November, I
was thoroughly exhausted. Walking the
length of the house felt like hiking to the
moon. Even though I’d tried to pace myself
through the move, it took so much time to
recover! I joked that this would be our last
move, (the next one will be out the front
door, feet first!). By January my legs still
ached and my blood pressure soared. I’d had
a couple of close calls when I nearly fell
because my good knee, the one without the
brace, buckled for no apparent reason. My
common sense told me it was wake-up time.
Since we had laid hardwood or tile on all the
floors, the surfaces were perfect for
wheelchair cruising. My intelligence told me
it was too risky to walk. My feelings balked.
What was holding me back? I just didn’t
want to sit down after a lifetime of walking.
Then one day in late winter a newsletter
arrived from the RANCHO LOS AMIGOS
PPS SUPPORT GROUP (March, 2004). It
contained an article on “Understanding
Muscle Strengths” with Dr. Sophia Chun.
The article included many useful definitions
of muscle strengths and a muscle test that
one could self-administer. There was also a
series of questions and answers about
equipment available for those who might
now need assistance walking. After I’d read
the article thoroughly, and took the muscle
test, I understood I truly didn’t have a
“marketable muscle” in my good leg, not
one strong enough to reliably support my
walking. It was time for me to “ride.”
There were other, more mundane
practicalities to face. In the months of
slowing down before I made the decision to
give up walking, I’d gained far too much
weight to be healthy and move easily.
While this is a common problem in PPS and
aging, I knew I’d become less than vigilant
about watching my weight and I’d also
begun using food for entertainment and
reward for hard work. I started the Atkins
diet and have lost thirty pounds in the last
ten months. It wasn’t easy, but doing so has
made me aware that I had to change the way
I ate if I were unable to raise my energy
output. The weight loss and change in eating
habits has renewed my confidence in my
ability to make difficult changes.
Finally, this past summer I tried out the
IBOT when it became available for
evaluation in San Francisco. For those who
haven’t heard, the IBOT is a robotic power
wheelchair, equipped with three computers,
capable of climbing stairs and curbs. I had
watched its development by Dean Kamen
for years and hoped that it would be the
answer to my prayers. I’d imagined it as
some kind of Bat-Mobile that would
overcome rough terrain and other barriers!
My new community is full of hills and steps
making many friends’ homes off limits now.
Much to my disappointment, the IBOT
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proved to be too limited in the range of
things it can do to merit either the cost or the
risks. Can you imagine a health insurance
company even cost-sharing a power chair
that sells for $29,000 + extra for training,
with only a one year warranty on parts and
labor? But IBOT technology is moving in
the right direction. If we can send people to
the moon, we can move closer to getting
disabled people beyond earthly barriers.
There is cause for hope, I think.
While it is impossible to change the world to
meet our needs, we can all make small
changes that make a difference in our daily
lives. We can install grab bars to make
ourselves safer; get rid of carpeting and lay
vinyl for not much money; create more
accessible food preparation areas and find
easy one-dish recipes. If we can accept and
expect change, we can maximize our assets.
Small changes create ways to preserve our
independence, vital to maintaining selfesteem.
Maybe accepting change is where the
practical physical aspects of our dilemma
come together with the mental and
emotional ones. What will be important to
us in ten years depends much more on how
we feel about ourselves, our own image of
self-worth, than whether we walk with
crutches or sit in a wheelchair.
We can’t control what happens to us; no one
can do that. For me, letting go of the will to
control my life has made a difference.
When I let go of the need to do things the
way I always have, to do everything I
always have, I am relieved. I have learned to
stop a task and take a nap when I listen to
my body’s signals. I have learned to say
NO to another activity or commitment even
if I think I might enjoy it. Consequently, I
have discovered a richer relationship with
my family, and I am better company for
myself. In creating this newer, healthier
balance, I have learned to cease worrying
about things. The practice of joyful
surrender has made this possible. And it is
worth more to me than losing thirty pounds!
This mental adjustment to change did not
come easily. My bad feelings often got in
the way. When I finally knew I had to give
up walking and sit in a chair, I felt bummed,
sad, defeated again by this old illness that
makes unannounced comebacks. I wondered
if everyone felt that way. But after allowing
myself these feelings, I saw the benefits of
having made a sound evaluation. I knew I
could trust my own intuition without waiting
for a doctor to prescribe a wheelchair for
me. So much of this struggle is with feeling.
As a dear friend said to me after I’d made
the choice, “You know, you have courage
and intelligence. To walk would be
foolhardy now. You’d risk a terrible
accident and confinement from which you
might never recover. Riding means you’re
taking care of yourself. It takes guts to see it
and do it!”
I started riding permanently almost ten
months ago and the effects were noticeable
immediately. No more pain in shoulders and
hands from weight bearing; much reduced
daily chronic fatigue; no more huge expense
of energy from paying attention to each and
every step I took! Confining as the chair
looked and felt in some ways, sitting in it
also provided a “get out of jail free” card.
The anxiety that accompanies fear of falling,
the tremendous focus and concentration, the
endless challenge that walking everywhere
had become disappeared. I felt released from
a burden, no longer bound.
I still walk a little almost daily so my
muscles don’t forget how to do that, and my
body gets stretched. It feels good. I also love
getting out alone in my minivan with the
electric scooter in the back, ready to travel.
The world invites me with increasing “blue
spots,” ramps, and wide doors. I appreciate
my good fortune in having a home that
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works for me, a decent pension from my
teaching years, and a husband who is willing
to help carry the burden.
Years of depression cost me a great deal of
pleasure and isolated me in paralyzing fear
of what was to come. Now, I trust myself to
see the way. I’m having a life full of
laughter, honesty, and some sadness as well.
The sadness that accompanies loss is real. If
I fail to admit that, I spiral downward into
fear and wear myself out. Then comes
depression with its slow, dull ache. I never
go to these negative places if I let myself
snarl and cry every once in a while. Even
wail. I heartily recommend it.
I can’t predict what will happen in the future
any more than any able-bodied person. Yet,
if I open my heart and allow myself to feel
my opportunities and blessings, I can set out
each day as boldly as Huck Finn. At my age,
I can ask the right questions and make
increasingly discerning judgments about
what is good for me and what I need to
leave by the wayside as I continue this
journey.
Healing the Blues
By Dorothea Nudelman and
David Willingham MSW.
dnudelman@sbcglobal.net
ISBN: 0-940168-31-6
[Why not ask your local library
to get you a copy]
You know you’re living in 2004 when…
1. You accidentally enter your password
on the microwave.
2. You haven’t played solitaire with real
cards in years.
3. You have a list of 15 phone numbers to
reach your family of 3.
4. Your reason for not staying in touch
with friends and family is that they
don’t have e-mail addresses.
5. Every commercial on television has a
website at the bottom of the screen.
6. Leaving the house without your cell
phone, which you didn’t have the first
20 or 30 (or 60) years of your life, is
now a cause for panic and you turn
around to go and get it.
7. You get up in the morning and go
online before getting your coffee.
8. You start tilting your head sideways to
smile. 🙂
10. You’re reading this and nodding and
laughing.
11. You are too busy to notice there was
no #9 on this list.
12. You actually looked back up to check
that there wasn’t a number 9 on this
list.
AND NOW YOU ARE
LAUGHING AT YOURSELF.
Johnny was shuffling along, bent over at
the waist, as his wife helped him into the
doctor’s waiting room. A woman in the
office viewed the scene in sympathy.
“Arthritis with complications?” she asked.
The wife shook her head, “Noooo.
Do-it-yourselfism” she explained, “with
concrete blocks.”
o—o—o
Yesterday my husband came home from
his training session with his occupational
therapist and said, “I have good news and
bad news.”
I knew it was the day his OT was deciding
if he needed to continue using the three
wheeler they had lent him when he left the
hospital or to go into an electric
wheelchair.
“The good news is, using the electric
wheelchair, I got 18 out of 20 on my
driver’s test.”
I said, “Great! Now what’s the bad news?”
He said, “They were pedestrians…”© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 14
“Once Stricken,
Twice Afflicted”
AS TOLD BY JACK MEINTSMA
As a result of effective vaccines and
diligent immunization programs,
science has made great progress in its
effort to eradicate polio, a debilitating
childhood disease. However, even
decades after recovering from polio,
some survivors find themselves
afflicted again, facing what is called
post-polio syndrome (PPS)
You may never have heard of PPS.
Neither had I until it became very much
a part of my life. But in order to
understand the syndrome’s effects on
me, let me go back to a day in 1941,
when I was about a year old.
My mother noticed that I was slumped
over in my high chair. She rushed me
to the doctor. After examining me, the
doctor told my mother, “Your son has
infantile paralysis.” I was soon
paralyzed from the waist down.
After six months on a waiting list, I was
admitted to the hospital. Years of
recurring illness followed. Through
intense physical therapy, I gradually
regained the use of my legs. At the
age of 14, I was walking again. But
other problems, such as incontinence,
remained. Over the years, I went
through several cycles of surgery,
confinement to a wheelchair, and
physical rehabilitation. Still, my left foot
is three shoe sizes smaller than my
right foot, and my left leg is about three
centimetres shorter than my right leg. It
was not until I was in my early 20’s that
I got the embarrassing problem of
incontinence under control. Finally, I
was completely over polio-or so I
thought!
Then, at age 45, I began to experience
pain in my legs, followed by fatigue.
Also, my leg muscles moved
involuntarily at night, making it very
difficult for me to sleep. The symptoms
did not let up; they only worsened. You
can imagine my surprise when I was
diagnosed with PPS-44 years after my
mother recognized my initial illness.
What Is Polio?
Polio is a highly infectious disease
caused by a virus that enters the body
through the mouth and multiplies in the
intestines. After invading the nervous
system, the virus can quickly cause
total paralysis. As the virus passes
along to the brain and then to the spinal cord, initial symptoms are fever,
fatigue, headache, vomiting, stiffness
in the neck, and pain in the limbs.
Many of the nerves stop functioning,
resulting in paralysis of some of the
muscles in the arms, legs, and chest.
But the body’s recuperative powers are
amazing. Nerves that were not
affected by the virus send out new
“sprouts,” as if running extra telephone
lines, to reconnect the muscle cells
that were orphaned when their
previous nerves died. A single motor
neuron in the spinal cord may also
grow terminal axon sprouts, which may
(Continued on page 16)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 15
Text box in the Awake! article
On page 20
‘Might I Have
Post-Polio Syndrome?’
Most experts require some combination
of the following criteria to make a
diagnosis of post-polio syndrome.
• A confirmed diagnosis of paralytic
poliomyelitis in the past
• A period of partial or complete
functional recovery followed by an
interval (of at least 15 years) of stable
neurological function.
• Gradual or sudden onset of muscle
weakness, fatigability, muscle
atrophy, or muscle and joint pain
• Possible problems breathing or
swallowing
• Persistent symptoms for at least a
year
• Exclusion of other neurological,
medical, and orthopedic problems.
Not all polio survivors develop PPS,
though as they are, they may naturally
develop premature tiring and aging of
overextended neural-muscle units.
Furthermore, over half of polio survivors
who go to their doctor with new
symptoms do not have PPS. Notes one
expert: ‘Sixty percent of polio survivors
with new symptoms have a medical or
neurological problem that is unrelated to
polio and that problem may be treatable.
Half the remaining patients have
increasing orthopedic issues related to
their polio residua.’
EDITORS NOTE
The following is the preferred criteria
for a Diagnosis of PPS used by the
Lincolnshire Post Polio Network
since 2000.
CRITERIA
FOR A DIAGNOSIS OF PPS
FROM 2000
1. A history of remote paralytic
polio
or
findings on history, physical
examination results, and laboratory
studies compatible with polio virus
damage of the central nervous
system in earlier life
Halstead L, MD – Silver J, MD
Am. J. Phys. Med. & Rehab.
Jan/Feb 2000
2. A period where we recovered.
3. A stable period of functioning,
from 10 to 50+ years.
4. New symptoms with no other
explanation
Diagnoses were given at the time of
polio on evidence of infection by
Polio Virus I, II, or III and the level
of clinically observed paralysis or
weakness to any part of the body.
60%+ nerve damage
clinical paralysis evident.
Diagnosis Paralytic Polio.
45% – 59% nerve damage
clinical weakness evident.
Diagnosis Non Paralytic Polio.
Clinical weakness NOT observable
below 44% nerve damage.
Diagnosis Abortive Polio.
Articles by Bodian D and Sharrard WJW
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© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 16
connect to many more muscle cells
than it did originally, thus greatly increasing the neuron’s capacity. A
motor neuron that previously
stimulated 1,000 muscle cells might
eventually reconnect to between 5,000
and 10,000 cells. This is evidently
what happened in my case, so that I
am able to walk again.
However, it is presently thought that
over a period of 15 to 40 years, these
neural-muscle units may begin to
show signs of fatigue because of
being overworked. PPS is a condition
that causes symptoms to reappear in
individuals who had recovered from
polio decades earlier. Many victims
experience muscle weakness, fatigue,
joint and muscle pain, cold
intolerance, and breathing problems.
Though accurate figures are hard to
obtain, the World Health Organization
estimates that there are 20 million
polio survivors worldwide. Current
evidence indicates that 25 to 50
percent of them are affected by PPS.
What Can Be Done to Help?
Researchers suggest that the old,
overworked motor neuron becomes so
exhausted that some of its nerve
endings die, leaving many muscle
fibres orphaned once again. To slow
this process, a polio survivor needs to
reduce the demand on the affected
muscles. Some therapists recommend
assistive devices, such as canes,
braces, crutches, wheelchairs, and
scooters. In my case, it became
necessary for me to wear braces on
both of my legs and feet. I also have
specially made shoes that support my
ankles and help to keep me from
falling.
(Continued from page 14)
(Continued on page 17)
Text box in the Awake! article
On page 21
Is There a Cure ?
Just as there is no confirmed etiology,
or cause – and thus no definitive
laboratory test – there is really no cure
at the present time for post polio
syndrome (PPS). There is, however,
treatment revolving around threepronged rehabilitation approach. Says
one expert: “More than 80% of patients
with PPS will demonstrate benefit with
rehabilitation techniques.
The three approaches are:
1. Lifestyle Modifications
1 energy conservation
2 assistive devices
3 non-fatiguing exercise
4 staying warm
2. Medications and supplements
Though many medications, prescription
as well as natural supplements, have
been tried, none has been proved to
help. There are many anecdotal reports
of improvement, but further study is
needed. Keep in mind that herbs can
interact with prescription medicine, so
always let your physician know what
you are thinking of taking.
3. Quality of Life
The strongest medicine that a
practitioner can provide to a patient
with PPS is education and encouragement. . . . Patients who were better able
to make lifestyle modifications (those
with better problem-solving skills, more
accessible environments, more access
to information and support, and a
readiness to compensate with assistive
devices) adapted better in their daily
occupations.” – Dr. Susan Perlman.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 17
Moderate exercise and muscle
stretching may also be required,
depending on one’s condition.
Swimming or warm-water pool
therapies are excellent means of
improving cardiovascular function
without straining the muscles. It is
important for the patient to cooperate
with the doctor or the therapist in any
exercise program.
In polio survivors, repeated demands
on the neurons ultimately result in the
failure of some muscle fibres to work
properly. Survivors may thus
experience a decrease in stamina or
even suffer debilitating fatigue. Loss of
stamina may also result from the
stress of constant pain or of dealing
with a returning disability. I have found
that periods of rest during the day help
me recover from fatigue. Many
doctors caution their patients to pace
their day-to-day activities rather than
push themselves to the point of
exhaustion.
In my case, constant joint and muscle
pain has been one of the hardest
things to deal with. Some may
experience muscle pain particularly in
those muscles that they have strained
during their usual daily activities.
Others experience a flu like aching in
all their muscles, along with
exhaustion.
Pain may lessen with antiinflammatory or other types of
medication. But despite medications,
many polio survivors suffer from
disabling chronic pain. Physical
therapy along with heat and stretching
may help. A sufferer who gave up her
practice as an anaesthesiologist told
me, “I could get out of this wheelchair
and struggle across the room, but the
(Continued from page 16)
(Continued on page 18)
Text box in the Awake! article
On page 22
What About Exercise?
Early on, recovering polio survivors
were encouraged to exercise “until it
hurts.” Then In the 1980’s, they were
warned about the dangers of exercise,
essentially about “using up” their viable muscle tissue.
Today experts recommend a path
midway between those two extremes.
Their message now Is, ‘Don’t overdo
It, but beware of inactivity.’ The National Center on Physical Activity and
Disability says: “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 end enduring enough to reap the
rewards..
In summary, an individualized exercise plan should:
1 Be developed in conjunction with
a knowledgeable physician or
physical therapist
2 Start at a slow or moderate pace
and progress gradually
3 Include warming up before and
cooling down after
4 Focus on stretching and general
aerobic exercises
5 Include warm-water pool exercise, if available
Says one expert in The Johns Hopkins Medical Letter: “Tiredness and
pain persisting beyond an hour indicate that muscles have been overused.” So listen to your body and
avoid pain, fatigue, and weakness.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 18
pain is so great, it isn’t worth it.”
Now, even with medication that
helps, I must frequently resort to my
wheelchair.
Some polio survivors have lost the
ability to shunt blood away from the
skin, which the body normally does
to conserve heat in the muscle
tissues. Without this ability, an
affected limb will radiate more heat
and cool down. When the muscles
are cold, poor communication from
the motor neuron to the muscles
results, and muscles do not work
properly. Thus, it is important to
keep the affected muscles warm by
wearing extra clothing. Some use an
electric blanket or a hot-water bottle
during cold nights. Avoiding
exposure to cold weather helps. I
found it necessary to move to a
warmer climate.
Breathing problems are common,
especially among those with a
history of bulbar polio, a form of polio
that affects the spinal cord in the
upper neck and thereby weakens the
breathing muscles. In times past,
this type of polio landed many
people in an iron lung. Today, a
ventilator may be used to assist
weakened lung muscles. In my case,
it is very hard for me to breathe
when I exert myself. Therefore,
every day I use a small device to
exercise my lung muscles.
Survivors need to be aware of
another potential difficulty. It is not
advisable for them to have surgery
and then return home the same day.
Dr. Richard L. Bruno, of the Kessler
Institute for Rehabilitation, states:
”NO POLIO SURVIVOR SHOULD
HAVE SAME-DAY SURGERY FOR
(Continued from page 17)
(Continued on page 19)
Text box in the Awake! article
On page 23
What are the Risk Factors?
Though every case is different , the
following factors may increase the risk
of a polio survivor developing postpolio syndrome:
• Severity of initial polio infection.
Generally speaking, the more serve
the initial polio, the higher the risk
of PPS.
• Age at initial onset. Those who got
polio at a younger age are actually
less likely to face PPS
• Recovery. Surprisingly, the greater
and more complete the initial
recovery, the greater the change of
eventually developing PPS.
• Physical activity. If a polio survivor
has been in the habit of exercising
to exhaustion over the years, this
may increase the risk of PPS
Editors Note:-
N.B. Facts in medical articles are
based on published statistics,
information and the personal details
obtained from the people involved
in the survey at the time the article
is written.
The articles that these facts were
taken from were written some years
ago. Many more polio survivors are
now coming to the fore with their
experiences of new problems of
unexpected functional decline. It is
therefore possible that the bulleted
facts above could be revised.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 19
ANY REASON [see end of article]
except for the most simple procedures
that require only a local anaesthetic.” He
adds that polio survivors require twice
as long to recover from the effects of
any anaesthetic and may need
additional pain medication. Their stay in
the hospital will usually be longer than
that of other patients. If I had known
that, I might have been spared a bout of
pneumonia following a recent minor
surgery. It is wise to discuss these
concerns with the surgeon and the
anaesthesiologist before surgery.
My Life Today
When I was able to walk at the age of
14, I thought my problems were, for the
most part, behind me. However, after
many years I find myself experiencing
the same problems all over again. For
polio survivors like me who develop
PPS, the situation is, as one writer put it,
“Once stricken, twice afflicted.”
Of course, it is only normal to get
discouraged at times. Nevertheless, I
can still get around and take care of
myself. I have found that the best
medicine for me is to have a positive
attitude, to adjust to changing
circumstances as they develop, and to
appreciate what I can still do.
For example, when I started in the fulltime Christian ministry about ten years
ago, it was easier for me to get around
than it is now. I was able to walk for a
considerable distance before tiring or
experiencing much pain. Now, however,
I can only walk a very short distance. To
conserve energy, I try to avoid climbing
stairs and walking up hills, I use my
wheelchair whenever possible. By
adapting my ministry in various ways, I
find it very enjoyable and even
therapeutic.
Yes, PPS does affect my life. It is
possible that my health will worsen. But
I find great comfort in the Bible’s
promise of a new world in which all will
be young again, with full health and
mightiness. Over the years, I have often
thought about the inspiring words of
Isaiah 41: 10 “Do not be afraid, for I am
with you. Do not gaze about, for I am
your God I will fortify you. I will really
help you.” With God’s help, I am
determined to keep going until PPS is a
thing of the past.
With Kind Permission to print
We are pleased to grant permission
for your request on behalf of the
copyright holder, our associate the
Watch Tower Bible and tract society
of Pennsylvania.
Editors of other newsletters please
note that this article cannot be
reproduced without permission as
above.
[Editors note:- Articles on
anaesthesia can be found:-
• one on the next page
• on our Website as below [If you
do not have internet access
please send s.a.e]
Bruno RL—
• Title: Preventing Complications In Polio
Survivors Undergoing Surgery
• Title: Be True To Your PPS And Your Teeth
Won’t Be False To You: Preventing
Complications In Polio Survivors Undergoing
Dental Procedures
Walker J
• Title: Polio Survivors as Patients – Guide for
Emergency Care & Surgical Health Workers
LEAFLET
• Title: You are going to have surgery – A Guide
for Polio Survivors LEAFLET
(Continued from page 18)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 20
SUMMARY OF ANESTHESIA ISSUES FOR POST-POLIO PATIENTS:
SELMA H. CALMES, M.D. CHAIRMAN AND PROFESSOR
U.C.L.A, DEPARTMENT OF ANESTHESIOLOGY, OLIVE VIEW, UCLA MEDICAL
CENTER, 14445 Olive View Drive, 3A-113, Slymar, California 91342-1495
Ph 818 364 4350 Fax 818 364 4775 – pager 818-529-0325,
email scalmes@dhs.co.la.ca.us)
Polio results in wide-spread neural changes, not just destruction of the spinal cord
anterior horn (motor nerve) cells, and these changes get worse as patients age.
These anatomic changes affect many aspects of anesthesia care. No study of polio
patients having anesthesia has been done. These recommendations are based on
extensive review of the current literature and clinical experience with these patients.
1. Post-polio patients are nearly always very sensitive to sedative meds, and
emergence can be prolonged. This is due to central neuronal changes, especially in
the Reticular Activating System, from the original disease.
2. Non-depolarizing muscle relaxants cause a greater degree of block for a longer
period of time in post-polio patients. The current recommendation is to start with half
the usual dose of whatever you’re using, adding more as needed. This is because
the polio virus actually lived at the neuromuscular junctions during the original
disease, and there are extensive anatomic changes there, even in seemingly normal
muscles, which make for greater sensitivity to relaxants. Also, many patients have a
significant decrease in total muscle mass. Neuromuscular monitoring intraop helps
prevent overdose of muscle relaxants. Overdose has been a frequent problem.
3. Succinylcholine often causes severe, generalized muscle pain postop. It’s useful if
this can be avoided, if possible. There is no experience with Raplon yet.
4. Pain is often a significant issue. The anatomic changes from the original disease
can affect pain pathways due to “spill-over” of the inflammatory response. Spinal
cord “wind-up” of pain signals seems to occur. Proactive, multimodal postop pain
control (local anesthesia at the incision plus PCA, etc) helps.
5. The autonomic nervous system is often dysfunctional, again due to anatomic
changes from the original disease (the inflammation and scarring in the anterior horn
“spills over” to the intermediolateral column, where sympathetic nerves travel). This
can cause gastro-esophageal reflux, tachyarrhythmias and, sometimes, difficulty
maintaining BP when anesthetics are given.
6. Patients who use ventilators often have worsening of ventilatory function postop,
and some patients who have not needed ventilation preop have had to go on a
ventilator (including long term use) postop. The marker for real difficulty is thought to
be a VC < 1.0 liter. Such a patient needs good pulmonary preparation preop.
Another ventilation risk relates to obstructive sleep apnea in the postop period. Many
post-polios are turning out to have significant sleep apnea due to new weakness in
their upper airway muscles as they age.
7. Positioning can be difficult due to body asymmetry. Affected limbs are osteopenic
and can be easily fracture during positioning. There seems to be greater risk for
peripheral nerve damage (includes brachial plexus) during long cases, probably
because nerves are not normal and also because peripheral nerves may be
unprotected by the usual muscle mass or tendons.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 21
COMPETITION
Since you travelled the path from full recovery to being less able have you had
things said to you have made you wince. You know, ‘Does she take sugar?’
As many polio survivors are:-
• going from the height of standing to the height of sitting on electric scooters
and wheelchairs
• Visiting or being visited by a variety of health professionals and government
officials whose knowledge of polio, pps and disability is a bit sparse
• visiting places, Museums, Malls, seaside resorts, hotels, motels, airports, etc
• in fact just becoming less able
we are having some really funny [although it did not feel like that at the time]
things said to us.
At the AGM we thought it might be fun to get some stickers made up to express
our thoughts. Have you got any phrases, one liners that you would share with
us.
There will be two prizes of £10. One for the one that makes us laugh the most
and the other for the one that reflects how we feel now PPS has altered the way
we live our lives. Don’t be shy, oh!, and not too rude. Come on folks this time lets
hear from at least 50% of the membership.
To give you an idea. When Hilary and Richard visited a museum in Florida a
couple of years ago. They unloaded two sets of wheels from their vehicle. Rode
to the huge front door of the museum [about 24 foot high by eight foot wide].
Almost as if they had said ‘Open Sesame’ both doors opened wide. They thought
‘That was helpful but one door would have been more than enough.’ They
wheeled up to the payment desk. There was no-one there. They turned to find
the two people who had opened the doors still there looking around.
‘Where is the rest of your party?’ We are it.
‘Where are your carers?’ We pointed to each other.
‘Oh! Do they let you out alone?’
What we thought was definitely not printable.
What wording can you think of to put on a sticker for our wheels or to be made
up into cartoons for the newsletter. Plus if anyone can make cartoons from the
phrases sent to us we would be really grateful. Maybe you would just like to tell
your story. Help make our readers laugh.
Entries by email to newsletter@lincolnshirepostpolio.org.uk
Or by post to LincsPPN address.
Entries by November 25th please.© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 22
TRAVELS WITH A WHEELCHAIR
Alan Russell visits Vienna
May 2003
First published in issue 29 (Spring 2004) of
“discover”, the magazine for disabled
people by disabled people in Cornwall.
I have a pen friend who lives in Vienna,
who I have only met twice before when we
have stayed in the Saltzkammagut area of
Austria, and when she invited us to stay
with her in Vienna, we jumped at the
chance, as we knew the eastern Tyrol area
and the central Saltzkammagut area , but
the western part of Austria, where Vienna
stands, was new country for us.
We managed to book return flights from
Heathrow to Vienna with Air Austria for
£100 each over the internet, which is
cheaper than flying from Penzance to the
Isles of Scilly, and I have to say, the
service was superb. After checking in at
Heathrow, we were offered to be
accompanied to the gate, but as I was
allowed to keep my power chair until
boarding I declined. At the gate we were
boarded first and I watched as my chair
was loaded in the luggage bay under the
aircraft. We were not allowed a bulkhead
seat as on this aircraft, they are also exit
seats and disabled, elderly and children
are not allowed to sit there, as persons in
that seat must be able to help other
passengers escape in the case of a crash.
Oh yes, the plane is sinking in the English
Channel and all those kind people are
going to stay on board helping others to
get out. I think not. If it was me I’d be gone
like a Gypsy’s lurcher. I will say though
that I had plenty of leg room and even
though I wear callipers I was very
comfortable.
Irene was waiting for as at we exited the
arrival hall, and was most surprised how
much help we received in collecting our
bags. I still don’t understand though why
as EEC citizens we still have to go through
customs and immigration. I thought we
were members of one state. Nonetheless,
we had a great flight with no complications.
We loaded our stuff in her car, and were
instructed to use the toilet as we were not
going home yet. How domineering these
continentals are!! We obeyed and for the
next few hours we were taken on a tour of
the area west of Vienna, almost to the
Hungarian border. It was so varied,
consisting of a large wine growing area,
huge lakes which to the Viennese are the
equivalent of our seaside beaches, with
sandy edges, bathing, boating and even
wind surfing. The whole area abounds with
numerous stately homes and monasteries,
nearly all open to the public at no charge,
and furnished in the most extravagant
manner. In Austria, the church receives a
lot of money raised in taxation from the
state, and it shows. The gold altars are a
sight to behold and are truly breathtaking. I
never got bored with looking at them.
Irene’s apartment was in the centre of the
city, but the area was so quiet and clean
you would never have guessed. The first
morning, over breakfast, we were told that
we were going to church, which came as
quite a shock, as we are not Catholics. We
are however great lovers of classical
music, so it came as a very pleasant
surprise to find that the service consisted
of Schubert’s Mass in B, sung by a 40
strong choir accompanied by a full
orchestra. It was wonderful to hear it for
the first time sung in its true context of a
catholic church that Schubert himself
attended. The church was situated next
door to the Lipizzaner stables, but the
Spanish riding School were away, so there
was nothing to see, but just down the road
was the famous Hotel Sacher, home of the
famous sacher-torte. Well you can’t go to
Vienna without a taste of the most famous
chocolate cake in Europe, so we didn’t,
and oh boy! Was it worthy of its fame?
Hmmm
There is so much to this area than the City
itself. A visit to the Vienna woods, showed
that it is more than just a forest, with lots of
open space and historical places, where
(Continued on page 23)© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 23
murder and intrigue involving the royal
family, stand cheek to cheek with
monasteries, and convents. We made a
visit to a wine grower, and as I was not
driving I was able to indulge my love of
wine whilst taking a tour of the family
concern, accompanied by the owner
himself. In this area, a lot of the growers
are vintners also, and instead of selling the
wine to wholesalers, sell their wine in their
own premises called “Heurigan”. In these
you buy the wine by the glass, and eat
really good food usually made by the wife.
Evidently, when these ‘new wines’ run out,
the particular heuriga close until the next
vintage is ready, but I believe they usually
manage to last out. Sounds a good system
to me.
The city of Vienna itself is truly
spectacular. It is compact and easy to
cover. We had a personal guide (not
cheap at 100 euro for a day) to show us
around, but felt it was money well spent.
To get around the area they have a system
of disabled transport where by prebooking, a mini-bus will collect you and
your family and take you where you want
to go and then come and collect you when
you say, all for the sum of 9 euro. It is
subsidised by the government, and
available to all disabled people. We used it
again when we visited the Schonbrunn
palace, which houses a great zoo,
botanical gardens, a palace and
immaculate grounds, together with a
miniature train which traverses the
grounds on a regular basis allowing
visitors to get on and off at will. The whole
of this area is wheel chair accessible.
The beautiful Blue Danube, Vienna’s much
acclaimed heart, actually doesn’t flow
through the city any more (an offshoot
canal does though), neither is it blue, but
the riverside area is truly breathtakingly
beautiful. River trips run at regular times
from outside the city and are well worth
taking. On a trip you sail majestically past
vineyards, castles, more monasteries and
some of the most outstanding countryside
imaginable. Another Viennese sight to visit
is the Prater, Vienna’s answer to Battersea
fun fair. It is a permanent fair and great
fun, being full of all sorts of rides, including
the oldest big wheel in the world, and the
oldest horse drawn roundabout.
Interestingly in the middle is the biggest
outdoor restaurant I have ever seen. Here
waiters rush round, serving about 250
customers, with trays held high crowded
with litre glasses of beer (weighing up to
20 Kilos in all), but the strangest thing is
the fare. It consists of 2 kilo roast legs of
pork accompanied by sauerkraut, potato
salad and pickles. All portions come in one
size of 2 kilos, and if it is not enough you
order more, if it is too much they supply
doggy bags for you to take it home. You all
sit at long tables and it is a very social
event, a good chance to meet the
Viennese on their own ground.
I fell in love with this beautiful part of
Austria. It was clean, convenient, and very
accessible. As a music lover there is so
much choice, (a lot of which is free as it is
in church), with the famous Opera House
as well as the Volksoper, in which was
being performed ‘The Pirates of Penzance’
in German! If you are not a music lover
there is so much else to see. You don’t
have to be an intellectual to enjoy Vienna,
but there are loads of museums and art
galleries if you are. The buildings are
incredibly interesting and even more so
when accompanied by a guide. The
shopping is to die for and many malls
make life very easy for those with walking
difficulties. I would recommend it to
anyone, even if your difficulties are severe,
as you will need to miss very little, and
being a compact city, I found it not too
tiring. I can’t wait to go back. Many thanks
to my friend Irene for being such a
wonderful and knowledgeable hostess.
About the Author – Alan Russell is a
founder member of the Cornwall PostPolio Support Network and a regular travel
columnist for “discover”. He can be
contacted at
alan.russell@originalthinktank.org.uk© Copyright – Lincolnshire Post-Polio Network – Bi-monthly—Volume 4 Issue 12 of 12 – October 2004 24
TRAVELS WITH A WHEELCHAIR
Alan Russell visits Vienna – May 2003
Pages 22, 23 and 24

Linc Pin Volume 4 Issue 12 Read More »

Linc Pin Volume 4 Issue 11

The Lincolnshire Post-Polio Information Newsletter

Volume 4 – Issue 11 – August 2004

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

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

From Henry’s Desk:

The Great Crippler, Then and Now

The poliovirus is a unique virus. This virus only thrives in humans. It can enter your body by an oral pathway, cause a gastrointestinal illness and leave your body with no apparent residual damage. More people had polio this way and probably never knew it. The other extreme of this

virus was its success as the great crippler of children. It was also a killer of children. This virus could invade a human body and kill in a few days. Death resulted from respiratory failure

or from the overwhelming viral invasion of the entire central nervous system leading to coma and death. The o b s e r v e d a n d l a t e r w r i t t e n observations and descriptions of children dying from acute polio are emotionally draining to read. Most of us who experienced polio did so in childhood and many were left with residual damage that set us apart from our peers. The most commonly used word to describe this damage was “crippled.” Many larger cities had hospitals for crippled children “Crippled” is a painfully accurate word. The Merriam Webster Dictionary traces “cripple or crippled” to the fourteenth century. It means:

1 : to be deprived of the use of a limb

and especially a leg

2 : to be deprived of capability for

service or of strength, efficiency, or

wholeness

The crippled state of polio survivors could cover a vast range of limitations. It could be something as minor as a visually undetectable weakness in one ankle to a near quadriplegia state

(Continued on page 4)

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

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make all denomination cheques/checks payable to ‘Lincolnshire Post-Polio Network’

Post to Membership Sec, 78 Heron Road, Larkfield, Aylesford, Kent ME20 6JZ, UK

UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £10 a year. All UK Memberships payable by Standing Order – Forms from Membership Secretary.

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – October 2004

Articles for publication by 15.9.04 by post or – newsletter@lincolnshirepostpolio.org.uk

Founder & Chair – Hilary Hallam – hilary.hallam@lincolnshirepostpolio.org.uk Treasurer – Denise Carlyle – denise.carlyle@lincolnshirepostpolio.org.uk Secretary – Di Newman – di.newman@lincolshirepostpolio.org.uk

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Mar-y-Mail – mary.kinane@lincolnshirepostpolio.org.uk

Committee – Pauline Butler, Mary Kinane, Sheila Dunnett

Phone Team – Leader Di Brennand – di.brennand@lincolnshirepostpolio.org.uk Phone Team – Pat Hollingworth, Margaret Edmonds, Pat Butler

Lincolnshire Post-Polio Network WebSite Administration

Chris Salter – netadmin@lincolnshirepostpolio.org.uk

CONTENTS.

Page 1, 4 to 6 — From Henry’s Desk. The Great Crippler, Then and Now Page 3 – Editorial Page 6, 23 and Back Page — Article about Derek Paice and his latest book. Page 7 to 12 — Dug Up from the Archives by Hilary Hallam Page 12 and 13 — Surviving a Move with PPS by Ellen Riddle Page 14 — Some Humour Pages 15 to 17 — This Morning Medical Mixtures and Health Fact Sheet Page 18 — Neuro News from Di Newman.

Page 20 and 21 — AGM Info and Reply Slip

Page 22 and 23 — Polio and Post Polio News. PandPP-News—www.mt.lincolnshirepostpolio.org.uk Page 24—Info on Member Derek Paice’s new book. DONATIONS.

$100 Anonymous Other donations since June will be in next issue.

Editorial by Hilary Hallam.

On the back page of this issue you will find details of Member Derek Paice’s new book. Birds, Fools and Angels. It is an action/romance novel with significant autobiographical content, including his time in the RAF in Lincolnshire. Read an article about Derek starting on Page 6.

Last week we received an email from a Polio Survivor in Nottingham seeking information on the newspaper notification about the City Isolation Hospital in Lincoln back in the 50’s. See Page 7 for how this looked. This led to a trip to the Library and extended the theme of this issue.

The LincPIN is now produced and posted to you by a team of members. Barry and Olivia Branston pack and post it. Robin Butler gets it printed. Len Van Zyl is going to set it up in a new format next issue. I do the Editorial and will provide Len with the articles – and some of them come from members like Ellen Riddle, our Texas One Arm Bandit. There are still more folks in this team. Can you guess who they are? YOU, the reader. If you have stories, articles, hints tips or bits, gripes, whatever, then post them to our main address or email them to newsletter@lincolnshirepostpolio.org.uk

Phone Team – Firstly on behalf of you all I send healing thoughts to Pat’s husband who is in hospital. Secondly I would like to welcome Judy Barter to the Phone Team. She is 65 and had polio as a child which left her with one leg shorter than the other. She is married with two grown up sons, and two grandsons. She is now having problems with PPS and has to wear a brace on her bad leg. She is great fun and is enjoying being on the phone line and has spoken, she says, to some most interesting people!

AGM. Yes it’s coming up to that time of the year again. The date is Saturday October 16th 2004 from 10.00 a.m. to 5.00 p.m. and the venue is The Memorial Hall, North Hykeham, Lincoln. See pages 21 and 22 for more information. Please, it would really help us if you either emailed us the information – I cannot come/hope to be able to come/can come – or return the Reply Slip.

Offers to help with any of the tasks that are necessary will always be gratefully received. If you think you could spare an hour or two a week/month then why not give us a ring/email us.

Do you find doing more than one thing at once now difficult. Suggested terminology by Len Van Zyl is that we used to multi-stream and now find we are only able to single stream. E.g. If you are watching TV do you notice when someone starts talking in the room before they are half way through their sentence. Can you switch from task to task as easily as you used to? Write and tell us your experiences—more info next newsletter.

IN MEMORIAM

Sylvia Dymond who was a member for many years

passed away on Sunday 8th August 2004.

Marie, her carer for the last six years rang this week to let us know that Sylvia after many years of

being cared for at home by visiting carers decided to go into a Nursing Home on July 20th.

Sylvia often spoke to Committee Members

on the phone

and was a lively contributor to late night radio programs in the South of England.

requiring the use of a wheelchair or leg braces and crutches. Definition number one above is fairly easy to understand and comprehend. Treating the crippled state of an extremity was often easier to accomplish. Many were fortunate to be able to regain all or almost all of the use of a weakened extremity because of physical therapy and exercise. Of course now we know that undamaged motor neurons were capable of sprouting additional dendrites to innervate more damaged muscle groups and result in increased function of these previously damaged muscle groups. Even when the damage was extensive a well fitted brace would make it possible for a crippled leg to support weight and make it possible for a crippled polio child to get back on his/her feet and return to the world beyond the security of home. Returning to school, socializing with able-bodied friends, going to church, movies, soda fountains, toy stores, and playgrounds were again possible. Many of us are familiar with this pilgrimage.

I am more intrigued by the second part of the definition above. The concept of “wholeness” or a sense of “wholeness” is an important aspect of anyone’s development. If that feeling of wholeness is altered by the reality of being crippled, then the developing child and adolescent has to either withdraw from the risks of socialization or find ways to cope and defend himself/herself out in the world. I am convinced that almost all of us chose the second route; that is we engaged the world around us despite the interpersonal risks. The fruits of taking this risk surround us as we read about the accomplishments of polio survivors, know first hand about the

courage and perseverance of polio survivors from our own interaction with them in support groups, and from what the able bodied have said about us.

Almost by necessity, most of us compensated for our crippled state, denied the reality of our crippled appearance, and made every effort to be normal in the normal world around us. If crippled in reality and feeling a lack of wholeness, as adolescents how did we cope with the challenges of relating to the opposite sex? Did we f e e l i n a d e q u a t e o r s i m p l y uncomfortable in the social undertaking of dating? By excelling in other areas, many of us compensated and sublimated successfully in an attempt to level the social playing field. Since the vast majority of us married and worked productively, we apparently did succeed in our social and employment strivings.

Now as older adults we have had once again to face the second part of the definition above. Many of us are physically weaker, less efficient and less capable of providing service. Some probably feel less whole, and thus we are “crippled” again by PostPolio Syndrome, the second Great Crippler. Most of us had never even imagined such an intensified decline in our overall functional state, as PPS has forced so many of us to accept. Most of us knew that we would get older, but thought that we would age more like our older family members or people we knew in the senior generation. For so many PPS has aged us prematurely. Those of us who may live alone now realize our v u l n e r a b i l i t y t o l o s i n g o u r independence and having to find assistance in areas that most of our

(Continued from page 1)

(Continued on page 5)

able bodied peers are not yet forced to face. Those of us who have ablebodied spouses are discovering that we depend on that spouse for some of the simple tasks of daily living. Our spouses are no longer young and do not always have the energy to carry the extra burden. In simple terms, all of this PPS stuff seems so unfair.

In our initial struggle with the Great Crippler, we were determined, generally optimistic, youthful in spirit, and found our way in the race of life. With this second round with the Great Crippler we are tired, not as optimistic, have to lower our expectations despite our determination, and still find our way at a slower pace in the race of life. We have all read the articles and listened to the lectures by the growing number of PPS experts, most of whom are younger than we are. We are reading more and more about the deaths of old polio survivors in our newsletters. Our numbers will continue to shrink just as the veterans of World War II; the survivors of the Holocaust and members of Tom Brokaw’s Greatest Generation will diminish. Hopefully there will be a day in this century when polio and photos of its crippled children will only be recorded in history books and historical medical texts.

We have not finished the race of life. But what is left for us to do? I think we should tell our stories and share our pilgrimage as a result of this disease. If you cannot tell your story, write about it or if artistically inclined, illustrate it. If we do not, future generations will never know. We probably would do well to establish more oral history collections within our respective support groups. I have often thought that we would do well to have a national or even an

international magazine or journal that was personal and historical and not just medical and scientific. The Multiple Sclerosis Society has an excellent periodical. For so many people with the same disability, we are relatively fragmented. There are countless PPS newsletters and websites that often publish some of the same articles. To my knowledge the only national publication that serves us is Post-Polio Health International (formerly Polio Network News or Gazette International Networking Institute or GINI). This publication is excellent, but is only published quarterly and is limited in size. I believe that there are many untouched and undiscovered sources of polio witnesses in written form, personal memories, and even in old newspapers. This October I am scheduled to make a Grand Rounds presentation at the Medical College of Virginia (now Virginia Commonwealth University Medical School), the medical school from which I graduated thirty-seven years ago. My topic will be “Polio, MCV, and Me.” I will attempt to describe my early experience with polio, the importance of MCV in my life, and a biopsychosocial overview of the disease of polio from my own analysis and the witness of others who will help me with this presentation.

The race is not over. Slow down and share your story. If necessary, get someone else to help you share your story. People will listen or will read. Stories from polio survivors are not fiction. They are real. The Diary of Anne Frank has done more to preserve the memory of the Holocaust than perhaps any other single publication. This was a simple but brilliant diary by a teenage girl who told her story as it happened. Time is growing short. Tell

(Continued from page 4)

(Continued on page 6)

your story of human suffering, of your splendor in the grass, and your faith that looked past death. William Wordsworth wrote it much better than me.

INTIMATIONS OF IMMORTALITY FROM

RECOLLECTIONS OF EARLY

CHILDHOOD

Then sing, ye Birds, sing a joyous song!

And let the young Lambs bound As to the tabor’s sound!

We in thought will join your throng, Ye that pipe and ye that play, Ye that through your hearts to-day Feel the gladness of the May! What though the radiance

which was once so bright

Be now for ever taken from my sight, Though nothing can bring back the hour Of splendour in the grass,

of glory in the flower,

We will grieve not, rather find Strength in what remains behind; In the primal sympathy

Which having been must ever be; In the soothing thoughts that spring Out of human suffering,

In the faith that looks through death, In years that bring the philosophic mind.

Henry Holland—Henry4FDR@aol.com

Article about Derek Paice written by Rick Mendosa. http://www.mendosa.com/index.html

All people with diabetes stand to gain from the Derek Paice’s LOSS. A 71-year-old research engineer who was diagnosed with diabetes 11 years ago, Derek applied engineering principles to determine how inputs–food–related to outputs–his blood glucose levels.

The result was his Low Sugar Score (LOSS) Diet. This way of eating, neither low nor high carb, leads not only to lower blood glucose levels but also helps to reduce weight, he says. He did find that carbohydrates had a rapid

and major impact on his blood glucose levels. Protein had a smaller and much slower effect. In fact, carbohydrates increased his blood glucose level from 3 to 20 times faster than protein, depending on the glycemic index of the carbohydrate. Fat didn’t seem to have any direct effect on his blood glucose level. And fiber slowed down the rate at which his blood glucose increased.

Derek’s LOSS diet avoids those carbohydrates that are quickly broken down in the intestine, causing rapid increases in blood glucose levels. These carbohydrates have a high glycemic index.

“I find that low glycemic index foods (such as high fiber cereals and soy flour bread with cheese) give me the best control,” Derek says. “I handle breakfast and lunch that way every day, but I like to vary dinner, and that’s more of a challenge. For me the best approach is simply to stay away from substantial amounts of high GI foods.”

After hundreds of experiments on himself and thousands of fingerstick tests over the past six years, Derek developed an extension of the glycemic index that he calls the “substance glycemic index.” or SGI. You don’t need to know the composition of the food, only how much it weighs.

He describes his results in a 51-page booklet, “Diabetes and Diet: A Type 2 Patient’s Successful Efforts at Control.” The SGI provides a means to select foods or meals having a defined effect on blood glucose on a day-to-day basis. “That’s how I control my type 2 diabetes,” he says. He also uses it to estimate his hemoglobin A1c measurements, which reflect long-term average blood glucose levels. “Using the test results in my booklet, I reduce my hemoglobin A1c from 9.0% in October 1993 to 5.4% in September 1997,” he says.

(Continued from page 5)

(Continued on page 23)

Dug up from Archives

Our email info line brought in a request

from a Nottingham Polio Survivor looking for newspaper cuttings regarding the people in the Lincoln City Isolation Hospital back in the 50’s.

A search at the Library and other material we have filed follows.

CITY HOSPITAL

Today’s report on patients in Fever Wards; Ill, (relatives may inquire by telephone); 349, 262, 9, Making satisfactory progress: 268, 61, 86, 97, 132, 137, 143, 146. All others convalescent.

DIGBY VILLAGE LINCOLNSHIRE

Courtesy of the Sleaford Standard

Thursday July 27th 2000

page 15

PAINFUL MEMORIES OF A POLIO EPIDEMIC

Some of you may be afraid of needles when you got to the doctor to have your jabs, or may find it a painful chore – some may even mistrust inoculations after hearing bad stories about side effects. But it can only be a minor irritation compared to the horror and heartbreak which such diseases could bring.

Half a century ago the village of Digby was fatal proof when it was hit by the worst disaster since the plague*. This summer marks the 50th anniversary of the village being stricken by a polio epidemic.

During the outbreak, 97 cases were diagnosed and there were 13 deaths, some adults but mostly children. Many who recovered were crippled and at one point even the village doctor, Thomas Smallhorn of

Ruskington, contracted the disease.

By the time the epidemic subsided it had spread to Sleaford.

Poliomyelitis, or infantile paralysis, is inflammation of the spinal cord and struck with deadly speed in the days before systematic vaccination in schools.

So serious was the 1950 outbreak that schools were closed, premises disinfected with ‘fog balls’* and an all out attack was made on the insect population by spraying insecticide on ditches and rubbish.

Flies

No-one really knew where the epidemic had spread from but it went on for 11 weeks. The summer was hot and flies were everywhere, but it could have been carried in the water.

“It was almost like a plague,” said the Rev. Cyril Clarke of Digby in an old newspaper cutting. “Most of the young children were affected. Many of them were partly disabled.”

First fatality was little

Frederick Beddall, of the

Pinfold in Digby, and the number of cases rapidly snowballed. Any aches and pains were suspected, but many people probably had a mild dose and never realised it.

Villager Linda Burden has been researching the village’s history and discovered that when the plague carried off a quarter of the village population in 1604 the victims were said to have been buried on The Pinfold (then known as common land). It is ironic then, that a concentration of polio cases should have affected that newly built 32 house council estate on the same plot centuries later.

On July 9, 1950, four year old Joan Greetham, living at number nine in the Airey houses complained of “Feeling funny”. Her mother put her to bed. On July 10, Mrs. Skelton, of number 15 noticed her five year old son, Keith, was feverish and sweating. She put him to bed and sent a message to Dr. Smallhorn thinking it was measles. Over the following days older children on the estate “felt funny” and Dr. Smallhorn officially and calmly declared the outbreak of polio.

(Continued on page 8)

Painful memories

For those who survived and still remain in the village, it still holds painful memories.

One woman who escaped the disease but remembers the days when the village had to be quarantined, preferred not to be named out of respect.

She said, “Every day you wondered who you would hear had gone down with it next. Dr. Smallhorn was a marvellous man. We had a residential nurse too who lived here and was not allowed to leave and only tended to the polio victims, she luckily didn’t get it.”

She knew of case on The Pinfold estate and North Street. The new cases held most of the young families, whereas the old part of the village housed the older people – but the epidemic brought solidarity as fathers and sons were going down with the bug from the estate. There were two deaths in Rowson within a week – a father and son – and it reached Kirkby Green too.

Provisions

Digby was voluntarily isolated as a precaution and the milk was delivered in waxed packets rather than glass bottles to avoid contact with the 375 villagers and possible spreading, all other provisions were left at the edge of the village or at a garden gate for collection too. Medical boffins had all

glasses and bottles checked for adequate disinfection and a system for screening the sewage from the concrete cladded “Airey houses” on The Pinfold was set up. It was discovered that personal contact was the main danger of infection. When the water was suspected fresh supplies were carried in from Sleaford. The fish and chip van and mobile cinema were asked not to come and two local bus drivers and a conductor living in the village were given time off work.

Attacks

In a 20-mile ring around the village, swimming baths were closed, telephones were cleaned and every possible hospital operation was postponed, for polio often attacks people convalescing.

O u r v e t e r a n v i l l a g e remembers the first public meeting called by Dr. Smallhorn and fellow doctors. They stood around the village cross in the open air to cut down possible infection. He warned people of the disease and explained not to be frightened unduly.

The county’s top medical experts were drafted in and had it in check by mid August using the isolation methods. Villagers just carried on working in the nearby fields – luckily the community was largely self-contained.

“Everyone did what they could to help the victims and the ambulance were going daily taking people for treatment in Harlow Wood

Hospital near Mansfield” remembers our villager. Isolation hospitals in Grimsby and Lincoln were also used and staff worked 24 hours a day on the Digby crisis.

Great relief.

She remembered Annie Hanson of Church Street would travel in the ambulances comforting the sufferers. “It went on for months and months and it was a great relief when it ended. It was a very frightening time.”

Some had to be in hospital for weeks and were left wheelchair-bound or with affected limbs, some needing wires on their boots and special slings for their arms to get about such as Ken Skelton.

A Mrs. Gresswell of North Street, who was 90-years-old, was never told of the epidemic as people didn’t feel the need to bother her!

A newspaper reporter visiting after the all clear asked a housewife how they would celebrate now they were out of danger.

“ T h e r e ’ s n o t h i n g t o celebrate,” she said. “No time for celebrating anyway. Got to get my husband’s supper.”

A television company is now considering making a documentary on the subject.

(Continued from page 7)

(Continued on page 9)

Now we go back in time to the papers of the 1950’s….

Sleaford Gazette

July 1950 Paralysis cases in Digby Area

The following statement has been made by the East Kesteven Medical Officer of Health, Dr. J. W. Scholey: As most people are aware, there have been one or two cases of “Infantile Paralysis’ in the Digby area’ but the infection appears to be under control. There is no cause for alarm.

‘A certain number of cases’ invariably occur during the summer months and parents are advised to take the following precautions They should, as far as possible, avoid crowded places of entertainment.

“Also they should prevent their children from over exerting themselves and becoming unduly fatigued. If the child is off colour and runs a temperature, particularly with an associated sore throat or abdominal pains, then it is advisable to call in their doctor for his advice.

“If these simple precautions are taken there is every chance of the infection being kept under control and the patient making a full recovery with little or no resulting disability”.

August 1950 51 Paralysis Cases – Two in Sleaford.

Four deaths,. But some

patients cured already.

Dr. J. W. Scholey, Medical Officer of Heatlh for Sleaford and East Kesteven, in a s t a t e m e n t y e s t e r d a y (Thursday) said:-

“Several more cases of Infantile Paralysis (Acute Poliomyelitis) have occurred in East Kesteven during the past week and there have, unfortunately, been more deaths from this disease.

“ S i n c e t h e i n f e c t i o n commenced in this area there have been a total of 51 notified cases although, of course, many of these have made full and complete recoveries.

“A week ago there appeared to be a definite tendency for the infection to show signs of subsiding and the cases which were occurring appeared to be less severe, but unfortunately several recent cases have been particularly virulent.

“All steps are being taken to combat the disease and the public are once again asked to carry out he previous requests regarding personal cleanliness and hygiene. There are also available in the General Post Office pamphlets which give guidance on what preventative steps the public may take.

“People living in areas where c a s e s a r e o c c u r r i n g , particularly if they have been

in contact with cases, are requested not to travel into other ‘clear’ areas except on journeys which are really necessary.

“Similarly people in ‘clear’ areas are advised not to visit infected areas unless their journey is necessary.

“By doing this it is hoped to limit the further spread of the disease.

One week later

Schools to stay closed: Precaution. Fewer New Cases – But No Relaxation Yet

It was announced this week by Kesteven Education Committee that some of the schools in the County are to remain closed beyond arranged dates for reopening, and it was added that the action was taken purely as ‘A precautionary measure in view of the cases of infantile paralysis that have occurred during the last few weeks.”

Now 57 Cases.

With six new cases during the past week, the incidence of poliomyelitis in East Kesteven reached a total of 57 cases during the present outbreak, although some of these have been discharged from hospital.

In an official statement yesterday (Thursday) Dr. J. W. Scholey said: I am pleased to be able to say the past week

(Continued from page 8)

(Continued on page 10)

has seen considerable decrease in the number of cases of Infantile Paralysis notified and I understand there are also less cases under observation.

“I can only hope that the general situation will continue to improve but we cannot afford to relax at all yet.

“People are still asked to adhere to requests which have previously been made and they can rest assured that as soon as medical authorities are satisfied they will remove any restriction which are at present being observed.

“As a precautionary measure it has been decided after consultant with the Education authorities that local schools will not open on the appointed day.

“Notices will appear in the local press from time to time and parents are asked to look for further announcements regarding the opening date of their particular school”.

Sleaford S. Denys Sunday School, it has been announced, is also to remain closed until the Sunday after schools restart.

At Lincoln Isolation Hospital a five year old Cranwell girl was admitted during the weekend for observation, and later in the week was diagnosed as suffering from the disease.

Two teen age patients, one from Aisby – a girl – and the other from Scopwick – a boy – were found not to have the disease and were discharged

and a girl from Metheringham was discharged during the weekend.

On Monday four observation cases were admitted at Lincoln, none of them from this district. The following day a Sleaford patient and a four year old girl from Digby were among those discharged, having been suffering from the disease, while a boy of two from Cranwell was admitted for observation.

In cases where children live in the affected areas but attend schools outside them, parents are being asked not to send them back to school, until further notice, which will appear in this paper.

Primary schools were due to open next week and Carre’s and Kesteven and Sleaford High School the following week. The decision was taken after consultant with the medical authorities.

A week later….. Infantile Paralysis. Very Marked Improvement.

“ A V E R Y m a r k e d

improvement” is reported by the Medical Officer of Health, Dr. J. W. Scholey in the Infantile Paralysis outbreak.

In a statement yesterday (Thursday), he said:

“I am pleased to be able to report a very marked improvement in the number of confirmed and suspected cases of Infantile Paralysis in the East Kesteven area.

“One or two sporadic cases as expected are still occurring but fortunately they have been relative mild.

“It is expected that schools throughout the area will reopen on September 18 but this, of course, will be open to further review in the case of any fresh outbreak and further information regarding this will be announced in the local press.

Three cases reported this week have taken the toll to 60. All three cases were in East Kesteven and none in Sleaford.

Two other items of interest from 1952 were

Polio Girl’s Archery

Thrills Crowd.

Overnight from London to the Lincolnshire individual archery championships at the Lindum ground on Saturday came 22 year old Betty Osborne. Friends may now call her Betty “Robin Hood” Osborne.

For along with other polio victims of Grimsby she had been exhibiting the technique of archery before thousands at the South Bank as part of the Festival of Britain programme.

And Betty, while there, did the Robin Hood feat of splitting an arrow in the gold.

“The crowd went wild over her”, said 24 year old Malcolm Smith, secretary of the Grimsby Polios Club.

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(Continued on page 11)

Betty fired for the gold, hit it plumb in the centre. Then with her next arrow she split the end of her first. It stick there quivering and thousand of spectators roared.

Then just to prove that she had been trying Betty, who walks with the aid of sticks, put four more arrows in the gold.

When the exhibition was over, the Polios started off on the night journey home to get to the Lindum Ground for more archery.

L i n c o l n s h i r e b e a t

Nottinghamshire by 2,933 points to 2,919 points. Individual champions of Lincolnshire decided on Saturday , were Mr. J. H. Arch of Grantham and housewife Mrs. M. Gillott of Scunthorpe.

They were each presented with a Festival of Britain trophy as well as the normal cup, by the deputy Mayor, Councillor, Mrs. E. I Cowan.

…. Best Polio score. Mr. P Leadham.

….. with a 38m.p.h. cross wind, yesterday, the bowman had to aim off as much as two feet.

Sport sign: There were more spectators for the archery than for the cricket match at the same ground.

May 26th 1952 The Lincolnshire Echo.

I.P. VICTIMS FORM

FELLOWSHIP.

Two years ago the people of Lincolnshire were made unpleasantly aware of the existence of Infantile paralysis. On Saturday Lincoln’s first Infantile Paralysis Fellowship Group was formed at a meeting i n H a n n a h M e m o r i a l schoolroom.

Describing the formation of the I.P.F. in 1939. founder secretary of the national organisation, Mr. F. Moreno said that he was most grateful to the medical profession for the way they had associated with the I.P.F. from the very day of its foundation.

The medical profession he said w e r e g e n e r a l l y v e r y conservative towards anything news. But their attitude towards polio had not only been one of deep understanding from the physical aspect, but hey had given much thought to the mental problems that arose as a result of the afflicted person’s inability to travel and meet people.

Whenever the fellowship had sought help they had found it in abundance. But their primary aim was to be as independent as possible. They were essentially an organisation run by the disabled for the disabled.

“Don’t Cut Them Off”

Mr. Morena, however, did not wish the able-bodied helpers to back out. In fact, he emphasised that the polio was glad to have the opportunity of making the ordinary human contacts.

They did not want to be cut off

from the outside world, spending their lives tucked away in a corner of a room. And it was the aim of the fellowship to prevent this state of affairs.

Mr. Morena went on to say that the greatest deterrent to the cause of the fellowship was pity. Polios did not want pity, in the worst sense of the word, or the incessant incantation of “You poor thing.”

Hated Word

“We hate the word “cripple,” he added. “We have a physical handicap but that handicap does not extend as far as our friends.”

Just as the British health service was envied by other nations, so the Paralysis Fellowship would one day, be envied, forecasted Mr. Morena. “The fellowship” was not founded by a Government department but had grown and strengthened out of the efforts of enterprising groups of polio sufferers. The rate at which the organisation had grown since it was founded in 1939, he said, was indicative of its success in the future.

Mayor as President.

Mr. Morena went on to speak of the services rendered to the polio sufferers by the various activities organised by the I.P.F. People afflicted in adult life were taught new trades and shown how to overcome their disabilities. He also in formed the meeting of an hotel at Worthing, Sussex, where polios could spend holidays at

(Continued from page 10)

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very low rates, or in some cases, free of charge. [Editors note—Sadly The Lantern Hotel is now to close later this year— information from the British Polio Fellowship Bulletin]

Proposing the inauguration of the group, and accepting the presidency, the Mayor of Lincoln, Councillor J. W. Giles, said he was particularly gratified that his first duty as Mayor had been to lend a helping hand to the polio sufferers of Lincolnshire.

Chairman of the National Fellowship, Alderman Reneson Couches, of London, described polios as being blessed, as a result of their suffering, with

added qualities of mind and soul. They had developed a determined outlook and were willing to go to all lengths to become useful citizens.

Sleaford Gazette, August 18th 1950

For the first time in this Country, a method known as TIFA was used in the fight against Infantile Paralysis at Cranwell on Tuesday and Digby on Wednesday. TIFA stands for Todd Insecticidal Fog Applicator.

The cinema at Cranwell was treated in 12 minutes, being filled with hot fog at the rate of 1;500 cubic feet per minute. By

a regulator on the machine it is possible to select a different size of fog globule, appropriate to the task.”

At Cranwell many local health officials gathered to watch the village pond being treated. On Wednesday, the machine visited Ruskington and the Council refuse tip behind the Lincolnshire Bacon Factory was treated. The ancient Saxon church of Thomas-a-Beckett was one of the buildings treated in Digby, and others were the Chapel, the School and the Village Hall, while the Beck and sewers were also treated.

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Surviving a Move with PPS

By the Texas One Armed Bandit Ellen Riddle Moonshadow@lonellen.com

As I sit here to write this article it is three weeks and two days since the move took place.

So much for moving gradually during the month of July with the movers coming either the last weekend of July or the first in August.

As usual life stepped in and the best plans get changed, tossed around and moved up.

So I’m now sitting back and tallying up how well I did in terms of what I now know about PPS, pacing, stress and so on.

Here are the things that did work well for me:

1. Starting packing early. I actually got

started before we had even found our new

home. We were going to move sometime

between August and September. So by the end of June I had already started packing up all those things that were totally non-essential. Amazing how much can fall into this category.

2. Sticking to packing only two (ok a few

days I cheated and did 3 or 4 but they were

small boxes <Grin>) boxes each day.

3. Leaving the boxes where I packed them

and letting Lon move them to the ‘stacking

areas’. It was so tempting to just push,

shove them around but I did succeed in

resisting this temptation.

4. Using packing tape and lots of it. In

years past I would do the tuck the four

corners of the top of box in when do-able to

‘save’ on tape. Not once did I struggle with

this ‘old way’ of packing learned way back

in my early work days in retail stocking.

5. As the move got closer and the closing

date kept being changed (ended up we

closed on Friday night and moved in on

Sunday! I already had scheduled the

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movers!) I found that the added stress, excitement, etc were making it more difficult to sleep so I upped my trazodone by half and got my good 6 hours in each night. (Thanks are owed to a fellow pps-er who shared this tip with me from her doctor. Yep, it never once occurred to me to call mine and ask!)

6. Sticking to my high protein, low carb diet

for as long as possible. I managed to do

this until the week before the move and

only a few days after the ‘big move’.

7. Obtaining the keys to the house early to

be able to ‘clean’ while we all knew I had

Lon load up the van with packed boxes and

had him distribute these to the closets of

the rooms where the items would go and

we both unpacked the entire kitchen. This

meant when we moved in the kitchen was

ready to be used.

8. Did the same with the master bathroom.

9. Packed up a small suitcase with needed

clothes to take care of the three to five

days after the move. This way I could take

my time unpacking our clothes and getting

them into the right drawers, neatly.

Now for the things where I did fall short and if I have to move again down the road (sincerely hope not!) I would have to change.

1. Not taking enough small, mini breaks. I

started out doing this along with my longer

morning and afternoon rest but the week

and half before the move and the week

after I allowed my type A-ness to win and

skipped more mini breaks than I should

have.

2. Giving into carb/sweet cravings as we

started eating more meals out or brought

in. This was only for about five days… but

it was three too many. I really felt sluggish,

and felt the difference even though I

miraculously didn’t gain any weight.

3.Kept unpacking when I didn’t need to get it done as fast as I did.

4. Didn’t balance packing with laundry and cooking. Pushed the limits of my ‘saved energy token account’ to the dangerous point before….

I hit payback time.

This was last week; the beginning of our second week here. I got up on Wednesday morning. I awoke feeling ill, fatigued, and unable to do anything. So from then until Monday of this week that is precisely what I did… next to nothing. It was payback time and I think it goes in the plus column that I accepted it and let my body rest as long as it needed.

I’m still in ‘minor’ payback mode this week. I find I am just doing a few things in the morning… with rest breaks. And even fewer in the afternoon. You’ll find me in my recliner watching TV from around 2 onwards. Dinners are good ones, but the easy make ones. Yesterday I made a large 3 lb meatloaf which we will enjoy for the rest of the week. Each evening we will enjoy this with a different frozen or canned veggie… and an easy tossed salad. The latter is easy as it is a mix of Salad express romaine… and baby spinach leaves… prewashed and pre-cut… chop up one green onion between us, a half a green pepper and toss on a few cherry tomatoes… lovely on a nice plate… oh and sprinkle some herbs and pre-grated cheese on top.

Thanks to everyone who has shared tips over the many years I’ve been on the various email lists and receiving the various newsletters and web site hopping… I know left to my own devices I would be a lot worse off.

Oh… and since this home is truly accessible I’m enjoying running my wheels from one end to the other! Now I don’t worry about pre-thinking what I need as I go to the office, the kitchen, family room and master bedroom.

Gentle hugs Ellen Riddle

Some Humour

A new inexperienced waitress said she was concerned about being able to carry the heavy trays and serve from them. A coworker explained that there were tray stands placed throughout the restaurant.

The nervous beginner served all her lunches successfully and afterwards asked a table of two if everything had been all right, “It was fine, love, but my friend and I have to leave now. Could I please have my walker back?”

– o –

This particular disabled Wizard worked in a modern factory. Everything was satisfactory except that certain miscreants took advantage of his good nature, and would steal his parking spot!

This continued until he finally put up the following effective sign.

This parking space belongs to the Wizard Violators will be toad!

– o –

I walk with a decided limp. My husband and I were together at the Mall. We always hold hands. A stranger came up to us and tells my husband he is so nice to be helping me. He tells her he HAS to hold my hand otherwise if he lets go, I shop!.

– o –

Two men are approaching each other on a sidewalk. Both are dragging their right foot as they walk. As they meet, one man looks at the other knowingly, points at his foot and says, “Polio, 1950.”

The other hooks his thumb behind him and says, “Dog Poop, 30 feet back.”

“Doctor, my leg hurts. What can I do?” and your doctor says, “Limp!”

You tell your doctor, “Nobody here listens to me!” and the doctor says, “Next.”

Your doctor gets angry and says “You’re crazy!”

You shout back, “Oh, yeah?!

Well, I want a second opinion.” And he says, “Okay, you’re ugly too!”

Doctor, I have a ringing in my ears.”

and his advice to you is, “Don’t answer.”

You hear the nurse say, “Doctor, the man you just gave a clean bill of health to dropped dead right as he was leaving the office!”

The doctor tells her, “Turn him around,

make it look like he was walking in.”

Courtesy of the Roosevelt Warm Springs Institute for Rehabilitation, Georgia, U.S.A. This is one of a number of cartoons done by two polio survivors many decades ago. Librarian Mike Shaddix has offered to dig up some more interesting material from the past for future newsletters. Thanks Mike.

THIS MORNING FACT SHEET

Medical Mixtures and Health

Transmitted on Granada Television’s This Morning Programme—23rd June 2004.

Fact sheet from Adult Education Department, Granada Television,

17 Hatfield’s, London SE1 8DJ

Grapefruit juice, garlic and herbal remedies are all harmless, but when taken with some prescribed medicines they can be potentially dangerous. Dr Chris joined us with medical mixtures that could be doing you more harm than good.

Are you at risk?

1 in 20 people put themselves at risk by taking potentially dangerous combinations of complementary and alternative medicines (CAMs) with prescription medicines according to new research. The research, carried out by the Department of Pharmacy at Kings College, London, found that the majority of those surveyed (62%) were taking one or more unreported CAMs when they collected a prescription from a pharmacy. The researchers found that even when respondents were asked what medicines they were taking a staggering 41 %.did not mention CAMs, as they did not categorise them as medicines.

Of these, about 1 in 20 were taking potentially dangerous combinations of CAMs and prescription medicines. The most common herb drug interaction in the study was St Johns Wort with Selective Serotonin re-uptake Inhibitors (SSRI’s) (30%). St John’s Wort is taken for mild to moderate depression and should not be taken with prescribed antidepressants.

Key mixtures to watch out for-

1 – GRAPEFRUIT JUICE WITH DRUGS FOR BLOOD PRESSURE/ CHOLESTEROL/AIDSTREATMENT/ VALIUM/TRANQUILISERS.

Many people have been attracted to grapefruit juice because of its cholesterollowering abilities and its reported benefits against cancer. However, what is not known, is the possible interaction of grapefruit with many prescription medications. Grapefruit interacts with many cholesterol-lowering drugs, antihistamines and ps ychiatric medications. In some cases, the results are fatal.

The victims may suffer from severe, elevated reactions that are not normally observed when the drug is administered in prescribed doses. If you are taking any of the “statins” or cholesterol-lowering medications, beta-blockers or calcium channel blockers for blood pressure; grapefruit juice is off limits. Some hospitals have even eliminated grapefruit juice as a beverage option to eliminate the risk.

The grapefruit juice can stop the break down of drugs, so for example if you are taking tablets for blood pressure, grapefruit juice can block the break down of drugs so that higher levels of the drug end up going into the bloodstream and can result in a dangerous increase in the side effects.

If you are taking any of the drugs for the conditions below then you should not drink grapefruit juice. Blood Pressure, Angina, Cholesterol lowering drugs, Transplant drugs, Rheumatoid Arthritis drugs, Severe psoriasis and eczema, HIV/AIDS drugs, Tranquillisers/Valium, Epilepsy, Phobias, Insomnia, Depression, Pre-op drugs, Heart Rhythm drugs, Viagra and Viagra me-toos.

This does not just apply to the juice but the grapefruits themselves as well. Also Seville oranges. Other citrus fruits are fine.

2 – CRANBERRY JUICE WITH ANTICOAGULANTS We’ve all heard the

benefits of cranberry juice for cystitis and

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bacterial infections of the bladder but cranberry juice should not be used with anti-coagulants. It has been reported that chemicals in cranberries may interfere with the effects of the blood thinning drug, warfarin. In one case, the effects of warfarin were decreased, but in several other instances, Warfarin’s effects were increased. One case resulted in death. Therefore, the use of supplemental cranberry products is not recommended for individuals who take warfarin. Also cranberries contain chemicals called oxalates, which may contribute to the formation of kidney stones. Drinking large amounts of cranberry juice (more than about a quarter per day) or taking concentrated cranberry supplements may increase the risk of developing kidney stones. Therefore, individuals who have or who ever have had kidney stones should not consume very large amounts of cranberries or use supplemental cranberry products.

3 – ST JOHNS WORT AND VARIOUS

DRUGS St Johns Wort should not be

taken with a selection of different drugs

including the contraceptive pill (if taken

with it, it can make it ineffective), drugs

used in transplants, anti-coagulants and

anti-depressants- (St Johns Wort is often

used for depression but should not be used

in conjunction with prescribed antidepressants).

It appears that preparations of St John’s Wort may be inducers of various drug metabolising enzymes. This may result in a reduction in the plasma concentrations and therapeutic effects of medicines metabolised by these enzymes. There is strong evidence to suggest that St John’s Wort significantly reduces the plasma concentrations of medicines -Indinavir and Cyclosporin. There are also reasonable grounds for concern that St John’s Wort

may reduce the efficacy of warfarin, and some HIV drugs.

Oral Contraceptives (“the pill”) may be affected by the enzyme induction of St John’s Wort. Some episodes of breakthrough bleeding reported overseas have been attributed to the interaction. Unintended pregnancy has not been reported but, given the mechanism involved, there are grounds for concern that the interaction might reduce the contraceptive efficacy of some oestrogen containing Oral Contraceptives.

Do not take with the following pills/ conditions. The pill, Pregnancy. Anticoagulants. Drugs used in transplants, SSRI’s anti-depressants, HIV/AIDS, Diabetics, Heart drug. Suffer from fits. Migraine treatments , Asthma

4 – GINGKO BILOBA AND ASPIRIN Ginkgo leaf is known to increase the time blood needs to clot. When it is taken with antiplatelet or anticoagulant drugs, the effect of the drug may be increased, resulting in uncontrolled bleeding. Aspirin can also delay clotting, so ginkgo leaf should not be taken orally at the same time as aspirin.

Some non-prescription products that are used to treat allergies or colds contain ingredients such as dexchlorpheniramine and pseudoephedrine, which may possibly make seizures more likely to recur. Although the risk is thought to be slight, taking any ginkgo product may also increase the possibility of seizures for individuals who have had seizures previously. Therefore, taking ginkgo at the same time as a non-prescription antihistamine or decongestant is not recommended.

The Gingko leaf is broken down by certain enzymes in the liver and because of this it

(Continued from page 15)

(Continued on page 17)

may possibly interfere with the use of prescription drugs that are processed by the same enzymes. These include some allergy drugs, some antifungal drugs, some cancer drugs, some drugs for high cholesterol and oral contraceptives. Ginkgo leaf may change the ways that the body makes and uses natural insulin. Therefore, it may also alter the effects of injected insulin for diabetes.

5 – GARLIC SUPPLEMENTS AFFECT

ANTI-COAGULANTS The garlic

supplements help to reduce the blood

pressure so can be potentially harmful with

anti-coagulants. They can raise the level of

anti-coagulants in the blood and could

cause haemorrhaging.

6 – MILK AND ANTIBIOTICS. The

antibiotic tetracylines is commonly used

for acne and other infections, especially

skin and throat related infections. The

problem with milk in combination with

this drug is it stops the drug being

absorbed throughout the large intestine.

7 – GLUCOSAMINE AND DIABETES

Glucosamine is often used to ease pain for

patients with arthritis. However diabetics

should avoid it because it affects their

blood levels and also patients with a

shellfish allergy because it is made up of

crushed shellfish.

8 – ECHINACEA AND HEART DRUGS/

TRANSPLANT PATIENTS Echinacea

should not be used with heart drugs or

transplant patients because it can cause

liver damage.

Also a report last week claimed that echincaea was useless in fighting off colds and flu. In a study volunteers were given either echinacea or a placebo and then exposed to the cold virus. Nine out of ten subjects in both groups came down with bad colds. Dr Steven Sperber who led the research in the US said ‘The results clearly

show echinacea is useless. Although widely used a number of well-designed studies show it can not be effective in preventing the common cold.’ But manufacturers of the herbal remedy claim it has antibiotic and antiviral properties and fights infection by increasing the quantity of white blood cells.

9 – SURGERY Certain drinks and drugs

should be stopped before surgery. These

are:-

• Garlic supplements and even garlic

seven days before an operation

• Gingko Biloba to be stopped two days

before surgery

• St Johns Wort stop five days before

surgery.

DRUGS TO BE WARY OF In

summary if you are on any of the drugs below you should tell your doctor what complementary medicines you are taking.

• The Pill

• Anti-depressants & H IV tablets .

• HRT tablets

• Anti-coagulants- these in particular

have a specific level that they should be at

in the blood stream for them to work and

this level should not be highered or

lowered even slightly. There is a very

‘narrow window’ for that level.

• If you are a diabetic you should also be

careful of herbal remedies that you use.

For Further Information

www.ukdipg.org.uk – www.rpsgb.org.uk

www .pharmacytimes.com

www.herbalinfo.net – www.napra.org

www.edis.ifas.ufl.edu

NHS Direct 0845 46 47

NW Medicine Info Service 01517948117 Email: druginfo@liv.ac.uk

Help lines

01280706251 Herbal Info Centre

0906 802 0117 Herbal help line GP’s

(Continued from page 16)

NEURO NEWS

From DIANE NEWMAN

Regional Alliance Representative for the Neurological Alliance. <dinewman1991@hotmail.com>

The Neurological Alliance

Co. Ltd by Guarantee No 2939840 Registered charity number 1039034

Southbank House Black Prince Road London SE1 7SJ 020 7463 2074 www.neural.org.uk

Would you like to set up a regional alliance?

We can use your skills and enthusiasm. E-mail admin@neural.org.uk

Annual General Meeting

4th November 2004.

The Rose Room at MS

National Centre, Cricklewood, NW2.

Lincolnshire

Neurological Alliance

Next meeting Friday 24th September 2004.

10.30 a.m. to 12.30 a.m. At St Barnabas Hospice Day and Education Centre Hawthorne Road

Lincoln

www.lincolnshire-neurological-alliance.org.uk

West Berkshire

Neurological Alliance

Thursday 30th September at 7.30 pm AGM. Guest speaker:

the Neurological Alliance Chief Executive, Judith Kidd.

Thurs 21st April 2005, an all day Neurological Conference

at Newbury Racecourse. Keynote speakers Professor Ray Tallis and

8 other speakers. Education credits. £120 for professionals.

Concessions available. Contact John Holt on 01635 33582.

Buckinghamshire Neurological Alliance, PO Box 499,

Amersham HP6 5XR,

Tel: 01494 729373, email: matraxa@aol.com.

Hosts the next Regional Forums’ meeting on Thursday, 7th October, 2004

South East Essex

Neurological Alliance

(SEENA) held its first AGM on

10 June, with guest speaker, Judith Kidd, Chief Executive, The Neurological Alliance. The newly formed Alliance’s Chairman, Dr. Elizabeth Dowsett,

is a real driving force behind SEENA’s work.

Launch of the Neurological Alliance of Scotland.

A new alliance of 32 neurological charities

was launched on Wednesday 26 May 2004.

and was featured in the MS magazine, MS Scotland.

Speaking at the launch was Health Minister Malcolm Chisholm who announced that neurological patients in Scotland

are to benefit from a £3million redesign in services.

Other Alliances

Morecambe Bay Neurological Alliance Mersey Neurological Alliance Sandwell Neurological Alliance Caithness and North Sutherland Neurological Group

Cambridgeshire Neurological Alliance Leicestershire Neurological

Special Interest Group

Glasgow Alliance of Neurological Groups Greater Manchester Neurological Alliance Lancashire and South Cumbria Neurological Alliance

Wales Neurological Alliance

ANNUAL GENERAL MEETING and SPEAKERS. The Annual General Meeting is being held on

Saturday October 16th 2004

at the Memorial Hall, Newark Road, North Hykeham, Lincoln. [A1434—100 yards west of traffic lights Newark Road / Whisby Road north—Mill Moor south]

The rooms will be open from 10.00 a.m. to 5.00 p.m. AGM will start at 10.30 a.m. prompt.

Followed by Coffee

Workshop for Polio Survivors and another for Carers and Friends Discussing the issues that occur and ways of coping with them.

12.30ish Buffet Lunch and time to chat.

2.00 p.m. Afternoon Session.

The afternoon will take the form of a talk on the Expert Patient program and a Workshop on the problems being experienced by Polio Survivors when being assessed. At this moment in time we do not have final confirmation of speakers due to circumstances beyond their control. We will have at least two health professionals join in the workshop sessions. This information will be to hand by the end of August and will be published on the Website and sent to everyone who returns the reply slip—bottom half of this page.

Tea Break—Raffle 6 prizes—Table top Sale, bring items to help raise funds. Question Time ending at 4.45 p.m.

I/We ……………………………..…………………………………

Address …………………………………………………………………………………….

………………………………………………………………… Post Code ……………….

Telephone Number ………………………………………….. Email – ………………………………………………………………….

WILL BE ATTENDING / HOPE TO BE ABLE TO ATTEND / WILL NOT BE ATTENDING. I enclose a cheque in the sum of £ ……………………………………………. For Day Tickets No. ……………. Buffet Lunches No. ……………………..

Attendance at AGM only—Free

Attendance at the rest of the Days Events—£5.00 per person. Under 16’s free. Buffet Lunch—£3.00

Dietary requirements …………………………………………………………… I will be using a wheelchair/scooter YES / NO

[This information is to help us set the room out before your arrival]

I will be staying over the weekend at the IBIS Hotel / Other venue ……………………….. [Bookings must be made direct to the IBIS Hotel mention the LincsPPN – 01522 698333]

ANNUAL GENERAL MEETING The following 4 nominations have been received.

Chair—Mary Kinane Treasurer—Denise Carlyle Secretary—Hilary Hallam

Committee with responsibility for the Neuro Alliances—Diane Newman Committee Members ……………………………………….. [further nominations needed please]

The following members have agreed to continue with the stated tasks A BIG THANKYOU to:-

Net Administration—Chris Salter

Membership and Newsletter Printing—Robin and Pauline Butler Assistant Secretary—Sheila Dunnett

Financial Advisor—Jenni Paulger Phone Team Leader—Di Brennand

Phone Team—Pat Hollingworth, Margaret Edmonds, Judy Barter Email info line—Mary Kinane

Newsletter Editor—Hilary Hallam Newsletter Setting Up—Len Van Zyl

I have the following requirements not covered overleaf. …………………………………………………………………………………………………………… …………………………………………………………………………………………………………… …………………………………………………………………………………………………………… Question Time ………………………………………………………………………………………….. ………………………………………………………………………………………………………….. ………………………………………………………………………………………………………….. …………………………………………………………………………………………………………..

I would like to talk to a committee member about helping with the work. Phone Team / Info Line /

Library Research / Online Research / ………………………….. Etc.

………………………………………………………………………………………………………….. …………………………………………………………………………………………………………..

RETURN TO SHEILA DUNNETT

Address removed from PDF edition..

Polio and Post Polio News A service from the

Lincolnshire Post Polio Network.

http://mt.lincolnshirepostpolio.org.uk/

Friday 20th August 2004

Heavy rains ‘pose bathing risk’. [271]

Summary: Heavy storms this summer have threatened to pollute Britain’s bathing beaches, a watchdog has warned.

The Marine Conservation Society wants signs put on beaches to warn swimmers that they could face health risks if they swim shortly after heavy rain.

Many UK beaches have sewer overflows on or near them, which divert untreated sewage into the sea following storms.

But the Environment Agency said it was “not identified as a major problem” and that beaches were “cleaner than ever”.

The Marine Conservation Society (MCS) warning came after sudden downpours this summer wreaked havoc in different parts of Britain.

As well as the flood which devastated the Cornish village of Boscastle, and the landslide in Scotland which trapped motorists on a road below, a number of rivers have burst their banks.

After one heavy downpour in London earlier this month, 50,000 tonnes of raw sewage flowed into the Thames when sewers were unable to cope.

“What we are talking about are not serious problems, but fairly short-lived illnesses such as gastroenteritis and eye and ear infections,” Thomas Bell of the Marine Conservation Society told BBC News Online.

“We are not saying people will get them, simply that the chances of getting them rise after rainstorms.

“We would ask swimmers to avoid going in the sea for a day or two after heavy rain.”

The World Health Organisation says evidence linking sewage pollution to diseases such as hepatitis A, enteric fever, polio and typhoid is inconclusive, but may be proven after sufficient clinical research.

Polio vaccination in Europe: the shift from OPV to IPV use. [263]

Opening paragraphs: The United Kingdom (UK) National Health Service recently announced changes to the national childhood immunisation programme with a shift from the use of live oral polio vaccine (OPV) to inactivated polio vaccine (IPV) for routine infant and childhood vaccination [1]. IPV has been shown to be a safe and effective vaccine, although more costly than OPV.

The UK thus joins a growing list of European countries that use IPV exclusively in their routine immunisation programme (currently 15 of the 30 European countries in the Table)(EUVAC.NET. http://www.ssi.dk/ euvac/). Some of these counties such as France and Sweden have had successful routine IPV programmes for many years, while others such as Ireland have moved only very recently from routine OPV to IPV use. Nine other countries, mainly in eastern and southern Europe, continue to only use OPV, while six have mixed programmes: recommending IPV for the primary schedule (or part of it) and OPV for subsequent booster doses.

August 08, 2004—Parent fury at new super vaccine for 8-week-olds. [231]

Summary: The government was last night facing a furious backlash from parents and

(Continued on page 22)

doctors over controversial plans to introduce a new five-in-one vaccine for babies.

Campaigners warned that the new jab, which is set to replace existing separate vaccines as early as next month, faces an MMR-style boycott from many parents fearful of the effect it might have on their children.

Despite the lack of advance publicity or consultation, stockpiles are already being created of the new jab, which will be given at two months to vaccinate against diphtheria, tetanus, hib, polio, and whooping cough.

Ministers, who will formally announce the plan tomorrow, insist the quintuple jab is safe, and a positive development for parents because it replaces the whooping cough vaccine, which contained mercury.

But while many parents, doctors and politicians last night welcomed the removal of the toxic metal, they expressed fears about the safety of combining so many vaccines in one jab.

Opponents argue that even if the vaccines which make up the jabs are safe individually, combining them could give rise to unforeseen reactions and risks.

The Scottish Executive last night refused to comment on the news or even say whether there had been any prior consultation on the switch to the new vaccine.

Although ministers are continuing to insist that there was no evidence that the mercury in the vaccine was harmful, they have said that it is good practice to avoid mercury wherever possible and therefore switch to the new jab.

The other reason for the switch is that the current ‘live’ polio vaccine will be replaced by a new ‘killed’ version, which is believed

to be safer.

Dr Andrew Wakefield, the scientist whose research in 1998 raised the first fears that the MMR combined jab could be linked to children developing autism, welcomed the decision to remove mercury from the jab as a victory for parents.

But he raised concerns about government plans to introduce the cost-saving five-inone vaccine and said more research should be done before it was offered.

David Davidson, the Scottish Tory health spokesman, warned that ministers risked alienating parents by insisting that vaccines needed to be taken in a single jab.

August 20th, 2004—Misconceptions about the new combination vaccine. [265]

Summary: The publicity surrounding the news of impending changes to the childhood vaccination programme has once again highlighted important misconceptions about combination vaccines.

Although changes are being made to vaccines at three different ages, all the attention has focused on the new pentavalent vaccine (DTaP/Hib/IPV), being given in infancy, with headlines of chaos and panic.

This is regrettable since the new vaccine offers children protection against the same five diseases as the previous regimen but in a slightly different, more acceptable, formulation.

This change is a natural progression in the light of changes in the epidemiology of polio and advances in vaccine technology — developments that were predictable some years ago.

The use of inactivated polio vaccine rather than oral polio vaccine is now possible

(Continued from page 21)

(Continued on page 23)

His lowest level ever was 5.2% this past February. That level is well into the normal range. Derek achieved it through diet alone. No pills. No insulin.

Exercise for him is difficult and infrequent because he got polio in 1949 and now walks with a cane. Born in London, England, he was a pilot in the Royal Air Force at the time. He immigrated to the U.S. in 1964 to work for Westinghouse at its research and development center in Pittsburgh. When he retired from that company in 1993, he started a power engineering consulting business in Palm Harbor, Florida, near Tampa. “Actually I am quite busy,” he says. “I wrote one engineering book that was published in 1995 and I am just finishing up a second one. Now I am having fun. I am doing only what I want to do.”

But after maintaining excellent control of his diabetes for severe years, treatment for two other conditions made it more difficult to control his diabetes. Early this year he noticed increasingly several headaches and muscle aches. “Over a period of about eight weeks I went downhill,” he says. “By the time I got to see a Rheumatologist I could hardly lift my arms and was barely able to get out of bed. The diagnosis was polymyalgia rheumatica and temporal arteritis. The diseases often come together and are disabling. The good news is that there’s a solution.”

The solution is a powerful steroid called prednisone. He expects to have to take it for about a year. But the bad news is that prednisone often raises blood glucose levels and had that effect on Derek. He now has to inject substantial amounts of insulin. His haemoglobin A1c level shot up to 6.1%, which most people with diabetes would be delighted to have, but was a large increase for Derek. Controlling his diabetes and balancing the needs of his other conditions are a challenge for Derek. But thinking like the engineer he is, he is undoubtedly devising further experiments.

(Continued from page 6)

because of the near elimination of polio worldwide.

While wild polio remained a serious threat, the small risk of vaccine associated paralytic polio was outweighed by the superior community protection afforded.

Oral polio vaccine is shed from the gut of an immunised individual, providing constant boosting to the community, whilst also preventing carriage of wild virus.

These properties are no longer necessary because of the worldwide decrease in cases of polio.

Many other European countries, as well as the United States and Canada, have already made this change. It has come later in the United Kingdom because the possibility of importation of polio from endemic areas has been greater owing to different patterns of migration.

The second development is the use of a particular acellular or component pertussis vaccine rather than the current whole cell vaccine.

An as yet unpublished study has shown that the new vaccine Pediacel has the same safety and reactogenicity profile as the standard pentavalent vaccine used successfully in Canada for the past seven years.

Friday 10th August—91-Year-Young Lucille Borgen Wins National Water Ski Title. [235]

Summary: Aug. 9, 2004 — Lucille Borgen of Babson Park, Florida, amazed the crowd at the 62 Annual Water Ski National Championships by winning the Women 10 slalom and tricks event on her 91st birthday. She is the oldest competitor to ever ski at the Nationals. The cancer and polio survivor was the lone competitor in the age group

(Continued from page 22)

Linc Pin Volume 4 Issue 11 Read More »

Linc Pin Volume 4 Issue 10

The Lincolnshire Post-Polio Information Newsletter Volume 4 – Issue 10 – June 2004

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

Photographs by Alan Russell Wheelchair graphic by Patricia Clouse Layout design by Chris Salter

Travels with a Wheelchair

The Algarve

Lincolnshire Post-Polio Network – UK Registered Charity No. 1064177

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 1064177 Donations large and small towards our work are always welcome.

Lincolnshire Post-Polio Network, 69 Woodvale Avenue, Lincoln, LN6 3RD, UK

Tel: +44 01522 888601 Fax : +44 0870 1600840

[Do not dial first 0 if ringing from outside the UK]

Membership Information

Renewal dates are the first of the Months of Feb, Apr, Jun, Aug, Oct, Dec.

Please make all denomination cheques/checks payable to ‘Lincolnshire Post-Polio Network’

Post to Membership Sec, 78 Heron Road, Larkfield, Aylesford, Kent ME20 6JZ, UK

UK Membership – Life Member (LM) £150 or £5 x 30 months S.O. – Member £10 a year. All UK Memberships payable by Standing Order – Forms from Membership Secretary.

Overseas Newsletters by Airmail. European Membership – LM E300 – Member E25 a year.

USA – LM US$375, Member US$25 a year – Canada – LM C$550, Member C$40 a year Other Countries please contact membership@lincolnshirepostpolio.org.uk for details.

Next LincPIN Newsletter – August 2004

Articles for publication mid July by post or – newsletter@lincolnshirepostpolio.org.uk

Membership Secretary – Robin Butler – robin.butler@lincolnshirepostpolio.org.uk Mar-y-Mail – mary.kinane@lincolnshirepostpolio.org.uk

Committee – Pauline Butler, Mary Kinane, Sheila Dunnett

Phone Team – Leader Di Brennand – di.brennand@lincolnshirepostpolio.org.uk Phone Team – Pat Hollingworth, Margaret Edmonds

Lincolnshire Post-Polio Network WebSite Administration

Chris Salter – netadmin@lincolnshirepostpolio.org.uk

CONTENTS.

Page 3 – Editorial Pages 4 to 6 – PPS and Sleep Problems: One possible solution Page 7 – Virus Seen in Muscle from Chronic Fatigue Patients Pages 8 to 10 – Travels with a Wheelchair: Alan Russell flies out to The Algarve Pages 11 to 15 – Restroom Alternatives: Practical Solutions for a Private Issue Pages 16 to 17 – Polio and Post Polio News Items from Around the World Page 18 and 19 – Thought provoking statements.

Donations (Feb to June 2004) – THANKYOU for your Support.

UK Account totalling £362

Dianne Lightfoot, Angela Johnson, Michael Parkin, Jane Shaw, Margaret Horton, John Doohan, Val Scrivener, Philip Dalton, Di Brennand, Yvonne Webb, Clare Colfer, Agnes Walker, Marguerite Standing, Anne Brown, Kathleen Burrell, Maureen McAvoy, Jenni Paulger, Thomas Croker, Catherine Patterson, Hilary Davies, Raymond Owen. Monthly payments totalling £12 – Sylvia Fortune, Jenny Rayner, Ewan Peddie US account totalling $207 – Robert Price Foregone expenses totalling £154 – Robin, Pauline, Jenni, Sheila, Denise Hilary INLAND REVENUE REBATE – £589

Editorial by Hilary Hallam.

I apologise for the slight delay in getting this issue out due to my father being in hospital and his brothers funeral. We have been spending time in Devon where the access is bad – 11 steps and steep drive – the bungalow spread out – 40 paces from bedroom to bathroom – and visiting Dad every other day -its more energy sapping than being at home.

We also attended the Exeter ME/PPS conference where I spoke on Assessing ourselves to provide more pertinent information to health professionals. [Full report in the next newsletter] Saying ‘my legs seem weaker’ is not as informative as saying ‘I used to be able to go upstairs stopping just once, but now run out of oomph every three steps’ or ‘I used to drive a manual car but have had to change to automatic, I can’t lift my leg onto the clutch pedal anymore’. When we are assessed the testing most often does not test the endurance of our muscles. We may be able to do an action ten times and then tire, hold an action for four seconds and then tire. If the testing you are being given does not get to the level of your weakness ask if you can demonstrate an action to the level where the weakness is evident.

Our AGM will be in Lincoln on

Saturday 16th October 2004

The medical speakers [Rehab Consultant/s and Physiotherapist/s] we have contacted have been unable to confirm till nearer the date if they are still free. Full information will be in the next newsletter.

Postal voting is now possible and we ask that you return the slip on page with any nominations you have for the posts available. The Charity Commission has agreed to two face to face meetings per year which we hope will entice a few more

of you to join our happy band. Meetings so far have been held on Saturdays with a start of 1.00 p.m. after a buffet lunch. If the venue is in Lincoln we have been able to offer a bed for those unable to travel and ‘do’ on the same day. Between meetings we keep in touch by email and if necessary arrange telephone conference calls.

As far as possible we try to spread the workload and ideally would love to have two people for every job. Taking on/ sharing/or helping with a task does not mean that you have to be on the Committee but if you would like to then you are most welcome. [See separate page enclosed with newsletter]

Would anyone else like to join the Phone Team led by Di Brennand in Merseyside. Pat is in South Yorkshire and Margaret in London. Contact Di Brennand if you would like more information on how this works. They arrange the time table between them and roughly do one week on and two off taking the calls from our Information Line. A reserve in case of illness or holidays would also be most welcome.

We have asked before but so far no-one has offered… do you take a newsletter/ magazine regularly? Why not tell us of any items that might be relevant to our members?

Mar-y-Mail will return next newsletter as Mary has taken a break from the info/ enquiry emails for a month. Taking back this task has been an eye opener for me. By the time I have checked my personal email/committee emails/ and replied to the info/enquiry emails it is time for a rest break and hence the newsletter delay. I am really grateful for Mary taking on this task and we ask is there anyone else who would like to share this job. Help is always available if you are not sure how to reply.

An Upside View by the One-Armed Texas Bandit – Ellen Riddle.

It is 7 a.m. on a Saturday morning. I’ve been up since five am… singing, cooking up a nice breakfast, finished my morning email reading and here I sit writing my monthly article. What a dramatic and wonderful change from this time last month!

Every article I wrote in previous months Hilary had to nudge me, remind and coax it out of me. I wanted to do these as I love to write. But with all the fatigue my oomph, my desire to do anything, even what I love doing had flown out the window.

In previous articles I’ve written about finally accepting I was over fatigued from doing next to nothing. I was fearful that this was another downward step with Post-Polio and I would be soon simply sitting around passively watching the world go by. Not a happy thought for one who has always been busy with something.

I’ve shared about my sleep study; along with the results being that while I definitely had problems sleeping it wasn’t due to any of the three possible apneas.

When I last wrote I was waiting to see my sleep doctor with a mixed feeling of relief in not needing night time venting (yet) and worry about well, what the problem could be.

The problem it turns out is simply that I was only getting an average of two hours of ‘good sleep’ a night regardless of how long I stayed in bed.

No wonder I was fatigued and needing to take rest breaks and lay downs from doing nothing! I would approach REM sleep only to bounce right back up to moments of being awake but without any apnea causing this.

The first week my doctor had me take Sonata (it was the only prescription sleep medication she had samples of on hand). I was to try it for the six nights and see what happens. The drug of choice though is one called Trazodone. This is one of the older anti-depressants which has been found to help with insomnia as it is very tranquillizing and only lasts 7 to 8 hours. Plus, it is better for long term use. The usual dose for sleep assistance is the small amount of 50 mg.

As soon as I got home I got on-line and checked out the pros and cons of Sonata [Zaleplon] Ambien [Zolpidem] and Trazodone [Desyrel]. I quickly came to see the whys behind Trazodone being my sleep doctor’s first choice and became willing to give it a go if I found help with the Sonata.

The biggest drawback to sleep aides such as Sonata and Ambien is that both are really designed for short term use. If there is something going on in your life that has you pacing the floors these can be really helpful. They are not really meant for long term use. So if I went with either of these I could only get a prescription for 30 days at a time and would have to see my sleep doctor at least every three months or so to make sure it wasn’t playing havoc with other body parts. (as opposed to an annual check-up with my sleep doctor with Trazodone.

The other is the cost. Here in the States these drugs run around $150

for a month’s supply while Trazodone comes in around $32. As much as I longed to sleep better those amounts would have me pacing more and encourage nightmare’s of doom and gloom.

The trial with the Sonata worked wonderfully well in that I slept for four to five hours solid. After that I was back to my normal routine but even this was such an improvement that I felt better. I called my doctor and obtained a prescription for a two month supply of Trazodone as I don’t go back to see her until the end of this month (June).

I’ve been taking it now for almost two weeks. The results are unbelievably wonderful. Not only am I waking up refreshed and ready to take on the day but each one is once again more fulfilling and rich.

My mild depression has vanished. I’m my old optimistic; the glass is half full person again. I am able to plan my day and actually get some of the things I plan done. Most important for me is my muses are also happy and I am painting, writing and working with my photo programs.

As if all of this is not enough there is another unexpected perk. I was at first worried that I would go from doing nothing to over-doing as it feels so good to be able to do again and crash right into a solid fatigue wall.

This isn’t happening. Since I am able to actually do things I find that I am more than happy to take my breaks and lay downs. I still don’t sleep but I definitely rest and relax.

I also can hear my body saying, “its time to stop for a bit.” And agree with

it because I know that after I rest enough my body will agree to go back and do something. Its literally been a few years since my body and mind had this agreement working.

I have learned through all of this that while fatigue is a very real part of Postpolio, that when resting and taking lay downs isn’t working; that when one wakes up too many days in a row not feeling really refreshed that it is not something we have to just accept as inevitable and part of it.

I know that I avoided getting this checked out a few years ago when my sleep problems first became apparent as I just didn’t want to face that maybe I would need night time ventilation. I kept listening to others talk about the warnings and would come back with things like not me, my nightmares aren’t that bad, or that frequent. I don’t have a morning headache so it’s not really a sleep a problem. But, my favorite excuse is that I honestly didn’t think I had insomnia because even though I was waking up a lot (I was aware of waking up 4 to 7 times a night and convinced myself this was ‘normal’) I didn’t get up. I had this picture in my head that one with insomnia was up wandering around the house, watching TV in the wee hours of the morning and so on.

My sleep doctor very kindly laughed at all of this. She gently said that “insomnia is not getting enough quality sleep. Period. If you are waking up not feeling refreshed and are too tired during the day it’s a problem.”

As usual, I am delighted to have found a solution to another facet of Postpolio. Also, as usual, I am sort of kicking myself for not looking into this sooner.

This is something is working well for me at this time; remember I’m only sharing my experience. It may or may not be the solution for you; but if you suspect you aren’t getting a good night’s sleep and you aren’t quite at the point where night time ventilation is needed this is another possible solution to consider. It is something else to discuss with your doctor to see if it may help you. Do remember that some polio survivors need much lower doses than the norm, so always discuss with your doctor the possibility of starting on a lower dose than he might normally prescribe.

Now, off to do some more singing (albe-it off key) while I finish my latest watercolor project.

Ellen Riddle@sbcglobal.net

[Editors note:- During early pps meets in the USA I learned other polio survivors were taking Elavil [Amitryptaline] at a low dose of 5 – 25mg. I experimented with 5 to 20mg and found 5mg to be the best for me. It is one of the old anti-depressants also used for pain relief. I get into bed and read and then take my 5mg – half the tablet – and within ten minutes am asleep. I can wake and go to the bathroom and back to bed and sleep for 7 – 9 hours. That is unless my mind wakes up and starts racing about something I have to do. My father has two light switches in the bathroom, one is white light and the other is a red light for nighttime… enough light to see what you are doing without waking you up!

Other polio survivors report 5mg is good for them too. CAUTION – one member slept for 2 days on 10mg and 5mg was still too HIGH for her.

We have learned to discuss all drugs with the doctor prescribing them. We get home and we check on the internet pharmacy sites for drug interactions and other information. We then check with the prescribing Pharmacist before starting any new drug.

However, on local TV in Florida we saw a new website Drugdigest.org and on checking Richards drugs on the interaction list found that if he took two of them together then one stopped the other being absorbed. It did state that ‘This interaction is poorly documented and is considered minor in severity.’

We thought that maybe this was the cause of his bad times when his movements slowed right down. We changed timings of taking the drugs and he now has a much improved more stable level of ability.

So far we have checked with one US and one UK Pharmacy, and both were unaware of the information on

Drugdigest.org. We have now on

advice completed a yellow card and sent this in.

‘DrugDigest is a non-commercial, evidence-based, consumer health and drug information site dedicated to empowering consumers to make informed choices about drugs and treatment options.’ and ‘not all drug interactions are known or reported in the literature, and new drug interactions are continually being reported. This information is provided only for your education and for you to discuss with your personal healthcare provider.’]

Virus Seen in Muscle from Chronic Fatigue Patients

by Will Boggs MD – Friday Jan 2nd via IMEGA-e Journal of Medical Virology, December 2003. NEW YORK (Reuters Health) – A persistent enterovirus infection in muscles may be to blame for some cases of chronic fatigue syndrome (sometimes called fibromyalgia) and others with chronic inflammatory muscle disease, a French Team reports.

They detected genetic material (specifically RNA) from enteroviruses in 20 percent of muscle biopsies from patients with chronic inflammatory muscle diseases and 13 per cent of patients with fibromyalgia/chronic fatigue syndrome, but not from healthy volunteers.

The findings favour a persistent infection involving defective viral replication as a cause of these conditions. “The persistence of defective or infectious enteroviruses is well established for a lot of organs.”, DR. Bruno Pozzetto from the University Hospital Centre of Saint-Etienne, France, told Reuters Health.

Such infections have been documented in the heart, with possible involvement in heart enlargement; in pancreatic cells, possibly linked to juvenile diabetes; and in the central nervous systems in association with a syndrome that afflicts ageing survivors of polio, the researcher explained. “However, the link between these diseases, as well as chronic inflammatory muscle diseases, and viral persistence is not clear.”

Pozzetto and colleagues investigated the presence of enterovirus in skeletal muscle biopsies from 15 patients with chronic inflammatory muscle disease, 30 patients with fibromyalgia/chronic fatigue

syndrome, and 29 healthy subjects to test their hypothesis that skeletal muscle may play host to persistent viral infection.

Three patients with chronic inflammatory muscle disease and four patients with fibromyalgia/chronic fatigue syndrome were positive for enterovirus RNA, the team reports in the Journal of Medical Virology. None of the muscle biopsies in this study contained a particular viral protein, the researchers note, which “suggests a defective viral replication.”

It is too early to derive implications for treatment from these results, Pozzetto said.

However, he noted that so-called Coxsackie B viruses seem to play a key role in persistent muscular infections. “To prevent this persistence, an inactivated vaccine directed toward these viruses could be indicated.”

Also, an anti viral agent called pleconaril, “acting during the early phase of the viral cycle, could also be useful in muscular disease clearly associated wit enterovirus.” This is being tried in some cases of heart muscle enlargement, Pozzetto said, “but it is too early to answer for muscular diseases”.

Published in the Shropshire & Wrekin ME Support Group Newsletter. www.shropshiremesupport.org.uk

Report from ME/PPS Conference in Exeter.

Due to time constraints a full report will be published in the next newsletter. It was excellent, more good contacts made, more information shared.

Thankyou Barbara for all your hard work.

First published in issue 28 (Winter 2003) of “discover”, the magazine for disabled people by disabled people in Cornwall.

They say: “Better to be born lucky than rich” and I suppose given the choice I know what I would go for, but until I get that choice I am quite happy to accept the good luck I was given when we were offered a week’s holiday in the Algarve for £99 each.

It started when after telling several double glazing telephone nuisances where they should place there windows – and it wasn’t in my house! The phone rang again and before I could explode, the voice told me that I had been chosen to receive this holiday. The cynic in me said, another time-share promotion, and I wasn’t wrong, but these people promised me the price included luxury four star accommodation, daytime flights from Bristol and all I had to do was to attend a 90 minute presentation in the hotel. I tentatively accepted, after telling them I was disabled and asked for details in writing which came in the next post, and to be truthful I was pleasantly surprised.

We paid our £198, and drove up to Bristol Airport. We had never flown from here before so it was to be a new experience. I had been recommended by a friend that a farmer near the airport stored cars for holiday makers, taking them to the airport and arranging taxis to bring them back for

less than half the airport rates. We received good directions and turned up at the farm in plenty of time. There was no need. He was there waiting and his large station wagon easily took the cases, us and the wheelchair. It was also very useful to be dropped right outside the entrance to the airport, where we were approached by a lady who directed us to the check-in area.

Although, unlike London airports, we had to use the normal check-in procedures, we were told which desk was going to be used, which made sure we were at the front of the queue.

Bristol is a lovely little airport with all the facilities anyone would need in the way of restaurants, shops and toilets, all of which were easily accessible to wheelchairs. The only problem I found was that carers did not have end of row seats reserved in the lounges, so that they can sit next to us like they have in other airports, and you have to rely on people moving to allow you to sit together if none are vacant.

Loading onto the plane was via steps, but this was no problem as they have the “ambulift” system, where you take your wheelchair into a bus with no seats and after being driven out onto the tarmac, you are lifted up to the door of the plane. We were seated and comfortable before the regular passengers arrived. The flight was only two hours, but they still had time to feed us on board, and before we knew it we were at Faro, where the “ambulift” delivered us to our cases and immigration.

FOUR QUESTIONS.

First Question: You are participating in a race. You overtake the second person.

What position are you in? Answer and next question on page 15

We picked up our hire car from Faro airport car park. It was a Suzuki Wagon, which had loads of headroom and room for the chair and luggage. We had extremely detailed instructions on how to get to our resort, and soon I realised why. The Algarve is totally devoid of meaningful direction signs in the rural areas. Places on the map are not signed, and places signed were not on the map, so we were not only pleased but surprised to arrive safe and well.

Portuguese drivers are fast and have no patience for first day of arrival Brits. When we turned the corner and saw this great big posh building with the sign “Alpinus Resort”, I told my wife not to get too excited as we would probably be staying in an annexe somewhere due to the price we paid. But no, after checking in, a porter arrived and took our cases to our beautiful apartment. It was only one bedroom, but was enormous and fitted out superbly, together with a balcony overlooking the most beautiful view of mountains and forests. I started to get worried, for when I go to the sales talk, what excuse can I give for not buying one?

The restaurant was very nice, and although slightly informal, I felt more comfortable eating in the local outdoor restaurants where fresh fish, such as bream or sea bass, together with vegetables, dessert and very drinkable local green wine was available for about. £5 – £8 and the snack bar near the pool served a mean pizza and very cold beer!

The centre was totally accessible, with lifts, ramps, and wide doors to all the public rooms. It wouldn’t be necessary to ask for a specially adapted room, as

all apartments are suitable for wheelchair users, although each had a very small ‘lip’ at the entrance to keep out any rain, as the corridors were all open to the elements. The pool was also well equipped with wide and shallow steps, but the sun beds were very low, which I had difficulty getting on and off. Also the pool was in the shade by about 3 p.m., so with everybody moving to the sunny spots, it got a bit crowded, though they tell me a new pool is planned for a spot that will not be shaded.

I must say that The Algarve in general is not exactly disabled friendly. The pavement surfaces are pretty uneven and great care must be taken. Most beaches are unreachable, as they are at the bottom of steep cliff paths, but there are obviously some that are not, so make sure you research this before you go. Those that are accessible, such as Albuliera, do have boardwalks on the sand, which were very useful. If you want to visit historical sites, such as Silves castle and cathedral, you will have a few problems unless you are very agile. It is possible though to get your car right up outside these places for you to see them close up without resorting to walking. It seems that traffic wardens haven’t been invented yet in The Algarve, but take your blue badge with you anyway, as there are some special parking bays.

The weather was in the high 70’s, this being September and sometimes ventured into the low 80s. This encouraged us to take a drive up into the mountains where I remembered from a previous visit the air is a little cooler and wonderfully fresh. What a shock we had when we got to Monchique and saw the destruction caused by the recent forest fires.

Everything was burned and in some places was still smoking. All the roadside cafes were gone, burned-out vehicles and road signs lay abandoned, and the air was thick. We really felt as though we were intruding, even though we turned up there in ignorance. The extent of the fire was indescribable. If you could imagine an area from Lands End to Truro, including the Lizard, you would be close to it, yet surprisingly, some houses survived and we could see signs of activity as the residents tried to resume their lives.

It was while trying to leave this area that I realised that my fuel was low (very low). With no chance of a filling station surviving the fires, we kept going. Have you ever tried, without knowing Portuguese, to ask a post lady, who spoke no English, up a mountain, miles from anywhere, where to buy petrol? Yet somehow we managed to get understood, and were soon refuelled. My wife reckoned I was a mime artist in another life.

Shortly after this experience, we reached an area unaffected by the fires and stopped for a drink. In The Algarve, they appear to have little roadside cafe bars at regular intervals, even if no-one lives within 20 miles! Here you can get a freshly made espresso coffee for 1 Euro (68p), but the amazing thing is that this owner held a really long and informative conversation with us without either of us being able to speak a common language. I must say I did throw in a few schoolboy Spanish words which somehow helped, and we left his company feeling we had tasted real rural Portuguese life, clutching a freshly picked bunch of his home grown grapes.

Came the day of the sales talk, and do you know what? It lasted exactly 90 minutes and when I said I wasn’t interested, no pressure was put on me and we went on our way rejoicing and feeling not a little guilty. The journey home was uneventful, and on arrival at Bristol, we were taken to the farm to collect our car in a wheelchair taxi. If you prefer to get to the airport by train, there is a regular bus service from Temple Meads to the airport that is wheelchair accessible, and loads of taxis.

The area we stayed in was typical of some of the smaller resorts, and may cause a few minor problems for people with walking difficulties, but it shouldn’t stop you from giving them a try. The bigger resorts are a little better; but with them you have to take the night clubs, all day breakfasts and kiss me quick hats. Personally I would recommend the smaller ones and chilling out locally, as touring is a sure way of getting a divorce if your wife is navigating on those sign-less roads.

Generally, I would advise you to research your trip well before you go, so you choose the right resort for you, but getting there is no problem, because as usual, all the help you need is there for you. Just make sure you have enough room in your case for some locally produced Portuguese wine and of course, Port.

About the Author – Alan Russell is a founder member of the Cornwall PostPolio Support Network and a regular travel columnist for “discover”.

by Linda Wheeler Donahue

Published in the January 2004 Rancho Los Amigos Post Polio Support Group Newsletter – reprinted with permission.

The beautiful Superstition Mountains of Arizona are a spectacular sight to explore on vacation. As my husband, son, and I drove through these remote windy hills, I was suddenly distracted from the painted desert colours exclaiming, “I have to GO!” My tolerant family was quite accustomed to these outcries, as I seem to have a small bladder that fills suddenly and urgently. My husband made a quick turn, driving offroad a ways into the desert. As he brought the car to a stop, he said, “James and I will take a little stroll and you can ‘go’ here.” Well, that worked just fine as the only living things around were some occasional, forgiving desert jackrabbits.

Got to GO!

Living in the bustling northeast, however, there are rarely such desolate places to stop to urinate outside of the car. That sentence is fair warning that this article will discuss a sensitive subject in frank and specific terms. By talking with other polio surveyors, i discovered I was not the only one with tips and techniques for discreetly urinating when a bathroom is not available. In the interest of being polite, I call these tips restroom alternatives.

For years I suffered (and suffered is

the only accurate verb) with bathroom problems. Back when I was still a m b u l a t o r y , w a l k i n g w a s extraordinarily uncomfortable to the point of exhaustion with each step. Because fast food restaurants usually had accessible restrooms, I quickly learned the location of every hamburger eatery within a 30 mile radius of my home. However, it was not sufficient to use just any old hamburger joint’s bathroom. It had to be a restaurant with a ladies’ room located very near to the entrance. The reason for that requisite was that walking on slick floors was difficult and dangerous for me. If the restroom was not near the entranceway, I could not use it. This requirement drastically cut down on my options, and I often had to drive in circles for miles to find a place where I could use the bathroom. My problems walking were compounded by an ‘overactive’ bladder’. This is an ailment where the detrusor muscle surrounding the bladder contracts spastically, which results in sustained, high bladder pressure and the sudden urgent need to urinate. Whereas normally, the detrusor muscle contracts and relaxes in response to the volume of urine in the bladder, in a person with overactive bladder, the volume of urine can be minimal. All these contractions throughout the day send signals best stated in four words: “I have to GO!”

There Had to be a Better Way.

I knew the time had come to abandon the hamburger restaurant solution and replace it with a discreet system that I could use within my life-equipped van. There just had to be a better way!. Well, there is and here is my technique. I park in a safe, but out-of

the-way place, such as the farthest corner of a shopping plaza parking lot. Fortunately, my van has dark tinted windows, so I am able to do my ‘powder room activity’ in privacy. One day I asked my daughter to do some detective work by going outside and looking at my vehicle from all angles to see what she could see, as I did my thing. She said someone might see the shadowy imagine of a person inside but they could see no detail.

For less than ten dollars, I purchased a plastic portable urinal, which I nicknamed ‘the duck’. I zipped it into a sturdy travel tote, securing the shoulder strap of the tote around the headrest of a seat in the back of my van. I added other supplies such as tissues, plastic bags, and baby wipes. The process is easiest when I am wearing a skirt. However, since I usually wear slacks, I keep a beach towel in the van to cover my lap.

Disposing of the urine is another issue to consider. I seem to imagine that someone will wander by and know exactly what I am doing. Therefore, the filled duck sometimes has to take a ride in the tote for a while before I can conveniently empty it. This style urinal does not have a lid so I place a plastic baggy over the opening and firmly secure the baggy with an elastic band. When I get home, the duck cleans easily with soap and water. This routine would work equally well for men as women.

High-Tech Ducks.

In addition to my plain ‘duck’ I have discovered some higher tech products that are very efficient. One is a personal urinal, compressed to about the size of a lemon, and called ‘Travel

John’ [loo]. It fits conveniently into a pocket or purse [handbag]. Even though it is small, it unfolds to hold a capacity of up to 24 fluid ounces. Its high-tech feature is an absorbent, biodegradable polymer substance within the pouch. This material converts liquid into a solid, odorless gel. Since the contents are spill proof, disposal is a simpler task than with my low-tech duck. With a bit of practice, this style of personal urinal can be used while seated and has a spill guard to prevent back flow during use.

Another bathroom alternative is called the Freshette system. This involves a small funnel attached to a flexible tube. It is compact and lightweight and comes with a convenient travel pouch that fits neatly into your purse [handbag] or pocket so you can carry it wherever you go.

Bladder Disorders and PPS

When I decided to seek medical help for my overactive bladder, I did some research to discover if my symptoms might be connected to polio. It took some digging, but I did find a number of medical studies showing that bladder disorders are indeed common among persons with Post-Polio Syndrome.

When I finally made an appointment with a urologist, I brought with me a study by Dr. Jonathan S. Vordermark and associates titled ‘Urologic Manifestations of Post-Polio Syndrome.’ In this research, Dr. Vordermark writes that PPS can affect bladder function. He did a study of randomly selected polio survivors and found that respondents with post-polio syndrome had a significantly greater prevalence of urologic symptoms than

did the respondents without post-polio syndrome. No dominant pattern of voiding dysfunction was noted. [Vordermark].

Another study states that there are numerous causes for neurogenic bladder dysfunction and symptoms vary depending on the cause. An overactive bladder is caused by interruptions in the nerve pathways to the bladder. This nerve damage may be a complication of having had polio. [Hendrick] Neurogenic bladder is a dysfunction that results from interference with the normal nerve pathways associated with urination. Normal bladder function is dependent on the nerves that sense the fullness of the bladder [sensory nerves] and on those that trigger the muscle movements that either empty or retain urine [motor nerves]. The bladder, internal sphincter, and external sphincters may all be affected by nerve disorders that create abnormalities in bladder function. My urologist said he believes my overactive bladder is caused by nerve damage from polio. No generalized conclusions should be drawn, however, as many people who had polio have normal bladder function.

My urologist was very interested in the articles I brought to him. As a result of t he re comm end at ion of Dr. Vordermark, my urologist conducted a urodynamic assessment. He then prescribed a medication to relax the bladder called Ditropan [oxybutynin], which tends to suppress the unwanted urgent bladder contractions. This has been only mildly effective in my case. However, my trusty ducks are always one hundred per cent successful.

Polio Survivor Share Tips.

My problems of overactive bladder combined with difficulty walking were my motivation to find a better way… a restroom alternative.

Not all PPSers have urologic dysfunction, but many have mobility problems. I wanted to know how others deal with the need to use a bathroom when none is around or is too difficult to reach. Therefore, I asked my friends who had polio for their tips and techniques and discovered this collection of ingenious inside information. Here are the comments from others who had polio:

• Some public toilets are too hard for

me to rise up from. I bring my

urinal and use it in the stall. Then I

do not have to struggle or ask for

help.

• I brought my personal urination

equipment from a catalogue called

MOMS. I paid $17.99 for the urinal

plus $2.49 for the female adapter. I

just love it. I keep it in a plastic bag

in my car and use it when I visit my

son. His bathroom is upstairs. With

the urinal, I just step into his cloak

closet and do my business. It does

not spill or leak.

• We have a bedside commode in

our vacation cabin in the upstairs

bedroom. I find it easier and more

convenient to use my little urinal

rather than the commode.

• Our friends invited us for an

afternoon on their boat. That

goodness I brought my ‘duck’ since

the bathroom onboard was too

teeny tiny to use.

• I purchased a urinary device from

Allegro Medical called ‘Travel

John’. It is a disposable urinal bag

containing Liqsorb, a product that

absorbs liquid and turns it into a

biodegradable, spill proof gel. After

use, you dispose of the bag in a

any waste receptacle. If you can

stand, or lift yourself to the edge of

your chair, this product works well.

• The ‘Freshette’ system works for

me. It looks like a funnel attached

to a tube and then to a container.

Try it first in the shower to get

accustomed to it.

• For long airplane trips, I use a

urinary catheter. An incontinence

nurse taught me how to do this. A

soft tube is placed into the urinary

bladder to drain urine. The catheter

is inserted into the urethra and is

connected to a urinary drainage

bag.

• There is nothing quite as good as a

dill pickle jar. Save your next pickle

jar, wash it out, and keep it in your

car. The screw-on lid is wonderfully

leak-proof and odorproof.

• The Rolli mail order catalogue

showed a collapsible urinal that

looked good.

• Some of the female urinals do not

have lids. Therefore, I carry a

plastic coffee jar with me and

empty the urine from the urinal into

the jar for safe-keeping until I can

conveniently empty it.

• My home health store sells a

portable ‘John’ and a portable

‘Jane’. These disposable pouches

will not spill.

We have all been in situations where a sanitary restroom is unavailable or too difficult to walk or roll to. Perhaps we are at a restaurant or conference center and the bathroom stalls are too small for wheel chair use. Most of the time, we are not in a remote desert as I was in those beautiful Superstition Mountains. I hoe that some of these solutions to a common problem will work for you. We polio survivors have dealt with many trials and tribulations more difficult to manage than discreet urination. We should not be embarrassed about this intimate topic. We just have to get resourceful!

References.

Agency for Health Care Policy and Research. Urinary Incontinence in Adults: Acute and Chronic Management. Rockville, MD, U.S. Department of Health and Human Services, 1996.

Bahnson, Robert R. Management of Urologic Disorders. London: Wolfe Publishing Ltd., 1994.

Department of Neurology, West Virginia University. Muscle and Nerve Journal, July 1996;811-818.

Hendrick Medical Center. Health Information Library; AccessMed Resource Center. Abilene, Texas. http://www.hendrickhealth.org/healthy/ index.html

Overactive Bladder. A program of the Bladder Health Council of the American Foundation for Urologic Disease. http://www.afud.org/oab/index.html

Vordermark, MD, Jonathan S, and Associates. ‘Urologic Manifestations of Post-Polio Syndrome.’ Journal of Wound, Ostomy, and Continence Nursing, July 1996; 23(4):218-23

About the Author

Linda Wheeler Donahue, Professor Emeritus of Humanities, is a polio survivor, writer and speaker. She is President of The Polio Outreach of Connecticut and is a frequent presenter at conferences, focusing on the social, emotional, and

psychological complexities of disability.

Linda’s essays on subjects of disability dignity, positive thinking, and living with the aftermath of polio, have been published worldwide. She welcomes feedback and can be reached at

LinOnnLine@aol.com

Linda’s Sources for Personal Hygiene Products.

Home health stores, camping/hiking stores, and retail mail order catalogues frequently carry these products. In addition, if you have internet access, you can purchase most of the merchandise in this article online. Here are the websites.

www.valuemedicalsupplies.com/incont.htm www.comforthouse.com/comfort/porjoh.html shop.store.yahoo.com/buyinplrivate/femurthispor.html www.caregiving-solutions.com/urinalfemale.html www.acespilotshop.com/pilot-supplies/safety/travel-john.htm www.dansmobility.com/convcarepersonalhygiene.html www.allegromedical.com/Home/search.asp www.freshette.com/

UK websites.

Boots the Chemist – www.boots.com Smith+Nephew – www.smith-nephew.com/UK/ Later Life – www.laterlife.com

HAVE YOU FOUND GOOD SPECIALISTS, AIDS, SUPPLIERS, MAGAZINES,

NEWSLETTERS, ORGANISATIONS, WebSites? – LET US KNOW PLEASE.

FOUR QUESTIONS CONTINUED.

Q. 1 – Answer: If you answered that you are first, then you are absolutely wrong! If

you overtake the second person and you take his place, you are second.

Try not to screw up in the next question. To answer the second question,

don’t take as much time as you took for the first question. Second Question: If you overtake the last person, then you are…?

Answer and next question on page 17

Polio and Post Polio News.

The following are a selection of items from around the World. The full article can be read by going to http://mt.lincolnshirepostpolio.org.uk/archives/ pandpp-news/

and adding the number at the end of each item

June 21, 2004

Lennie Bush: Dependable jazz

double-bassist and early bebop

enthusiast.

Leonard Walter Bush, double-bass player: born London 6 June 1927; married (one son); died 15 June 2004.

An old jazz-world maxim used to be “If you are forming a band, always start by hiring a really good double-bass player. Another word of advice often passed on to aspiring jazz improvisers was “If you get into trouble during your solo, listen to the bass line.” Lennie Bush totally understood and unfailingly provided the instrument’s primary functions in ensemble performance.

Lennie Bush was born in 1927 at Shepherd’s Bush in west London and was a childhood victim of polio. It left him with a permanent limp, but in his adult years his arrival at a gig, with rolling gait and handsome, craggy smile, gave musicians and fans a feeling of pleasant expectation. He studied violin as a youngster, but, as Louis Armstrong put it, “the doggone thing grew up on him”. 000104.html

June 20 2004

Botswana Races to Immunize

Children in Polio Scare.

Tue Jun 15, 2004 11:08 AM ET

GABORONE (Reuters) – Health

workers backed by helicopters and dugout canoes raced on Tuesday to immunize children across Botswana against polio after the first case in a decade raised fears of a resurgence of the deadly disease.

“Botswana was polio free, but the virus moves extremely fast — just one case can mean 100,000 people exposed to the disease,” said the head of U.N. children’s agency UNICEF in

Botswana, 000102.html

Gordon Jonathan Lewis.

South Africa launches polio

vaccinations after Botswana

outbreak.

JOHANNESBURG (AFP) – South Africa will next month launch a polio immunisation campaign targeting five million children after an outbreak of the crippling disease in neighbouring Botswana, the health ministry revealed.

Health spokeswoman Joanne Collinge said the 23-million-rand (3.5 million dollars / 2.9 million Euro’s) campaign was part of efforts to have South Africa declared polio-free by next year. 100101.html

April 29, 2004

PM tells students of brush with polio.

OTTAWA — Prime Minister Paul Martin used the poignant tale of his own brush with polio — and of friends lost in an epidemic — to encourage Canadians to get immunized against disease.

Martin visited Vincent Massey Public School in Ottawa yesterday morning to

m a rk n a t io n a l im m u n i z a t io n awareness week. He told a group of students how he contracted the disease in 1953 at age 8. 10093.html

April 23, 2004

HIV Not Linked to Polio Vaccine.

LONDON (Reuters) – Scientists reported new research Wednesday which they say is further proof that the AIDS pandemic was not sparked by polio vaccines used in Africa in the

1950s that were a chimpanzee virus.

contaminated with

The controversial theory on the origins of AIDS has been dismissed by many medical experts who say there is no scientific evidence to support it. 10090.html

April 14 2004

P a t ric k Nut t ge ns , A rc h ite c t , broadcaster and founding Director of Leeds Polytechnic.

Patrick John Nuttgens, architect, broadcaster, writer and educationist: born Whiteleaf, Buckinghamshire 2 March 1930; Lecturer, Department of Architecture, Edinburgh University 1956-61; Director, Institute of Advanced Architectural Studies, York University 1962-68, Professor of Architecture 1968-69, Honorary Professor 1986-2004; Hoffman Wood

Professor of Architecture, Leeds

University 1968-70; Director, Leeds Polytechnic 1969-86; CBE 1983; married 1954 Bridget Badenoch (six sons, three daughters); died York 15 March 2004.

Brought up as a Roman Catholic, he

was influenced and formed all his life by his Catholic faith, though subject to crises of doubt and questioning. At the age of 12, he contracted polio and was confined to hospital bed for a year. It left him partially crippled and thereafter he was troubled by pain and discomfort, borne with remarkable courage and good cheer. 10075.html

April 13, 2004

First Presumed West Nile Virus Patient in U.S. Responds to GenoMed’s Treatment.

ST. LOUIS, April 12 /PRNewswireFirstCall/ — GenoMed, Inc. (OTC Bulletin Board: GMED), a Next Generation Disease Management(TM) company that uses its expertise in genes to improve patient outcomes, said today that its protocol has helped the first patient in the U.S. in 2004 who is presumed to have West Nile virus encephalitis. This patient represents the ninth success out of ten consecutive patients to be treated with GenoMed’s protocol.

10072.html

FOUR QUESTIONS CONTINUED

Q 4 Answer: Nunu? NO! Of course not. Her name is Mary. Read the question again.

I GOT THEM ALL WRONG

TRY THIS ON THE “SMART PEOPLE” IN YOUR LIFE

A man’s home is his castle, in a manor of speaking.A pessimist’s blood type is always b-negative.My wife really likes to make pottery, but to me, it’s just kiln time.Dijon vu – the same mustard as before. Practice safe eating – always use condiments. Did Noah keep his bees in archives?I fired my masseuse today. She just rubbed me the wrong way.A Freudian slip is when you say one thing but mean your mother.Time flies like an arrow. Fruit flies like a banana.A gossip is someone with a great sense of rumour.She criticized my apartment, so I knocked her flat.Without geometry, life is pointless.When you dream in color, it’s a pigment of yourimagination.Condoms should be used on every conceivable occasion.Reading whilst sunbathing makes you wellred.When two egotists meet, it’s an I for an I.Energizer Bunny arrested – charged withbattery.Shotgun wedding: A case of wife or death.If electricity comes from electrons… does that mean that morality comes from morons?

Marriage is the mourning after the knot before. A hangover is the wrath of grapes.Corduroy pillows are making headlines. Is a book on voyeurism a peeping tome?Dancing cheek-to-cheek is really a form of floor play.Banning the bra was a big flop. Sea captains don’t like crew cuts. Does the name Pavlov ring a bell?Accept that some days you’re the pigeon, and some days you’re the statue.Always keep your words soft and sweet, just in case you have to eat them.Always read stuff that will make you look good if you die in the middle of it.Eat a live toad in the morning and nothing worse will happen to you for the rest of the day.ENGLISHIn what other language do people drive in a parkway and park in a driveway?In what other language do people play at a recital and recite at a play?Why does night fall but never break and day break but never fall?Why is it that when we transport something by car, it’s called a shipment, but when we transport something by ship, it’s called cargo?Why does a man get a hernia and a woman a hysterectomy?Why do we pack suits in a garment bag and garments in a suitcase?Why — in our crazy language — can your nose

run and your feet smell?

Why is it that a woman can man a station but a man can’t woman one, that a man can father a movement but a woman can’t mother one, and that a king rules a kingdom but a queen doesn’t rule a queendom? How did all those Renaissance men reproduce when there don’t seem to have been any Renaissance women?

In what other language do they call the third hand on the clock the second hand?

Why is phonetic not spelled phonetically? Why is it so hard to remember how to spell mnemonic? Why doesn’t onomatopoeia sound like what it is?

Why is the word abbreviation so long? Why does the word monosyllabic consist of five syllables? Why is there no synonym for synonym or thesaurus? And why, pray tell, does lisp have an s in it?

A writer is someone who writes, and a stinger is something that stings. But fingers don’t fing, grocers don’t groce, hammers don’t ham, humdingers don’t humding, ushers don’t ush,

and haberdashers do not haberdash.

If the plural of tooth is teeth, shouldn’t the plural of booth be beeth? One goose, two geese — so one moose, two meese? One index, two indices — one Kleenex, two Kleenices? If people ring a bell today and rang a bell yesterday, why don’t we say that they flang a ball? If they wrote a letter, perhaps they also bote their tongue. If the teacher taught, why isn’t it also true that the preacher praught? Why is it that the sun shone yesterday while I shined my shoes, that I treaded water and then trod on the beach.

Why is it that when the sun or the moon or the stars are out, they are visible, but when the lights are out, they are invisible; that when I clip a coupon from a newspaper I separate it, but when I clip a coupon to a newspaper, I fasten it; and that when I wind up my watch, I start it, but when I wind up this essay, I shall end it?

A waiter. Why do they call those food servers waiters, when it’s the customers who do the waiting?

A hot water heater. Who heats hot water? This is similar to garbage disposal. Actually, the stuff isn’t garbage until after you dispose of it.

I’ll follow you to the ends of the earth. Let the word go out to the four corners of the earth that ever since Columbus we have known that the earth doesn’t have any ends.

It’s neither here nor there. Then where is it?

Extraordinary. If extra-fine means “even finer than fine” and extra-large “even larger than large,” why doesn’t xtraordinary mean “even more ordinary than ordinary”?

Put on your shoes and socks. This is an exceedingly difficult maneuver. Most of us put on our socks first, then our shoes.

The bus goes back and forth between the terminal and the airport. Again we find mass confusion about the order of events. You have to go forth before you can go back.

Keep a stiff upper lip. When we are disappointed or afraid, which lip do we try to control? The lower lip, of course, is the one we are trying to keep from quivering. I’m speaking tongue in cheek. So how can anyone understand you? They do things behind my back. You want they should do things in front of your back?

Why do six, seven, eight, and nine change to sixty, seventy, eighty, and ninety, but two, three, four, and five do not become twoty, threety, fourty, and fivety. Why is first-degree murder more serious than third-degree murder and a third-degree burn is more serious than a first-degree burn. Why can we open up the floor, climb the walls, raise the roof, pick up the house, and bring down the house.

[This article played havoc with my spell check!]

Donations can be made to Lincolnshire Post Polio Network via Charity Cards and online at www.charitycard.org.

If you are already a CAF Charity Card holder then go to

newsletter@lincolnshirepostpolio.org.uk

Linc Pin Volume 4 Issue 10 Read More »

Linc Pin Volume 4 Issue 9

Editorial by Hilary Hallam.

The Committee would like to extend huge thanks to Life Member Bob Price from Jacksonville, Florida for being the postal address and paying in our USA$ checks [cheques] for the last six years. He obtained funding for the computer for the WebSite 5 years ago and has added donations to almost every paying in slip. His support towards our work has been magnificent. Bob is now retiring and going to be visiting other parts of the USA. Our Best Wishes go with you.

I have to apologise for sending the last newsletter, by email, to Robin in the wrong Printer format. When this happens a few of the words can move slightly onto different pages. Corrected version is on the WebSite.

Great News. Sheila Dunnett has been completing applications for grants over the last few months and through her hard work we have now had our first success. Awards for All has granted us the sum of $4,113 for the purchase of laptop computer, projector, screen and Microsoft PowerPoint software. This will enable us to give presentations at any venue.

Our first project will be to increase the number of presentations we can offer to a wider variety of audiences and timings available. If you have any information, photographs, news articles, short video clips, medical records, etc that would help us provide more visual effect then we would like to hear from you. Your approval would be sought before any of this information was used in a presentation and all original material would be returned. It might also be necessary/or you could request that we block out personal details/hospital names.

What we are looking to the NHS to provide is a standard throughout the country more appropriate route of referral for polio survivors to health professionals who have

enough knowledge of polio and pps to assess us correctly the first time. Sometimes we have a hard time convincing health professionals that situations have occurred/ are still occurring. For instance one member has been given seven different diagnoses from seven different doctors from the same medical speciality. One week she happened to see one on the NHS and one privately and one said she definitely had MS and the other that she definitely did not have MS. We would be using this information in a positive way, e.g. chart to show how our stress levels and frustration increase as we try to obtain a diagnosis doing the rounds of hospital departments, the time it takes and the costs incurred.

A slide already used is one showing the variety of responses to our members:-

1 Are you sure you had Polio, you look fit

and healthy to me.

2 The pain down your left side is ‘all in

your mind’.

3 PPS does not exist and if it did you

would not have it.

4 You say you can only walk 25 yards now,

please walk across my office [4 steps

each way]

5 PPS? Oh! yes, I just read something

about this new condition [first medically

noted in 1875]

If you take the first response above, this member now takes a photograph with him to appointments showing him wearing callipers on both legs and a newspaper article about the polio epidemic in the village when and where he caught polio. His recovery was such that physically unless undressed and walking more than across the doctors office he does not easily look like the Polio Survivor the health professional remembers from his 20 minute lecture at College.

Your Network needs your help to get the message across. We look forward to hearing from you.

I’m the editor of a new monthly health journal, the Consumer Health Journal. I’m trying to fill a gap I’ve observed in health reporting — health consumers are, in my opinion, smarter and more interested than much of the media gives them credit for.

If you have a few minutes, please visit Consumer Health Journal at (www.consumerhealthjournal.com) and pass the link along to whoever you think might be interested.

If you have any comments on the site or its content, please let me know. My goal is to improve the quality of consumer health information, and I’d appreciate your feedback.

Thank you for your time,

Alison Stewart, editor Consumer Health Journal www.consumerhealthjournal.com

Would appreciate information as to the advisability of a postpolio patient using the statin drugs in connection with cholesterol lowering.

In reply we sent a variety of links to medical and newsletter articles.

Dr. Julie Silver in a talk in Florida 2 years ago advised that we should not immediately say ‘we cannot take that drug it is on a list of not advisable for PPS’.

It would be much better to discuss with

your health professional the need for the drug for the non pps condition and the information you have regarding this drug and PPS. It might be that together you come to a decision to try the drug at a low dose and monitor the effects because it is more important that you take care of the other condition.

ID<0EL&K 0<&+L – remember that the side that must be displayed is the one with the serial number and expiry date of the badge on it.

I am looking for someone who has experience with polio so that I can get some much needed advice/treatment.

[I thought those of you not on the Internet might be interested in this. Emails like these arrive in our email inbox every month.]

“After further investigation it was also discovered that Gen. Ibrahim Moussa did not declare any next of kin. Twenty millions Five Hundred Thousand UnitedState Dollars is still lying in my bank and no one will ever come forward to claim it. My suggestion to you is that I will like you as a foreigner to stand as the next of kin to Gen. Ibrahim Moussa so that you will be able to receive his funds.”

Needless to say we delete these and do not respond but it would be nice if it was true.

The West Haddon Players have sent us a further donation of £145 towards our work for which we are most grateful.

Mary Kinane – Committee Member. mary.kinane@lincolnshirepostpolio.org.uk

If you lose blood new blood cells of all types are formed from stem cells in the bone marrow, and after a time the composition of blood cells in the body will be entirely normal. This regeneration of adult cell types from simpler adult stem cells in bone marrow happens with blood and with other cells types too, but can it be for all cells?

If you break a bone and the bone is set and immobilized, after a month there will be new bone cells which bridge the gap. Where did these new specialized cells come from? The repair is expected, and even taken for granted, but exactly how does this happen?

There are cells in many areas of the body, which are primitive ( 8H&I>>LCLHAI<AL&) because they have not developed into specialized cells like neurons or muscle fibers, but they can, under special circumstances, differentiate and repair damaged tissue. Is it possible that we can collect and manipulate these cells in the lab, and grow these undifferentiated DAL=K GLEED to make other specialized (differentiated) cell types? Cell biologists have been doing this for a while. Figure 1 gives a broad outline of the process.

This article will explain how these regenerative cell processes occur and will present much of what we have learned about controlling and directing new tissue regeneration in the lab (IHKIACF), and in test animals (IHKIF). We will also discuss the prospects for the future with regard to Stem Cell Technology. Finally, we will examine the outlook for the application of Stem Cell therapy, and its derivative discoveries, toward mitigation and support of cells damaged by old polio. Finally, we will examine the conceivability of stopping, reversing, or improving Post-Polio Syndrome with Stem Cell Technology.

There are two broad categories of stem cells: adult stem cells and embryonic stem cells. When the sperm enters the egg the sperm and egg nuclei fuse and the genes from both sperm and egg mix. This fertilized egg, the$+FAL, is AFAI4FALHA[2]. The totipotent cell has the capability to divide to form new cells and/or transform (differentiate) such cells into all the different cells and tissues in an adult. It is a developing embryonic cells that, when acted upon by cellular hormones and the environment [2] can switch blocked human genes on, and some active embryonic genes off and thereby transform (differentiate). Toti, the prefix, indicates the potential for transformation into all the cell types of the body to produce a new individual. If the human being is to develop normally this is imperative, as all the tissues must derive from the zygote. As this fertilized egg goes through the stages of embryo formation, growth, and differentiation of cells the process is called L=0C$F+LHLDID[3]

Before a sperm fertilizes a human egg it contains a single copy of all the genes a human being possesses. When the sperm penetrates the outer covering of the egg the sperm’s genes mix with the egg’s component of all the genes needed to be human. Now there are two sets of all the genes, which is the normal situation for every cell in the adult human body. The information each gene possesses, say for blood type, may be different in sperm and egg, but after fertilization there are two genes for blood type and for virtually every other human genetic characteristic. In the adult, however, there are different cell types, which make up different tissues. There are bone cells, skin cells, nerve cells, blood cells and the cells that compose organs. And, each general cell type, like a blood cell, has several different subtypes. Each differentiated adult cell expresses different genes and suppresses others[1]. In the adult body there are several trillion cells.

Embryonic stem cells, in the center of the spherical five-day embryo, given the proper nutrients and growth factors, seem to be able to divide and grow in a laboratory dish for a year or more without differentiating. Stem cells from an adult cannot[4]. The reasons for this have not been clarified but early embryonic stem cells “signal” to one another, and while many of these signal chemicals have been identified, and are used to direct cells to develop into particular tissue cells; bone, cartilage, muscle, or neurons, the distinctive chemical differences between adult and embryonic cells are unknown.[5]

Figure 2 below illustrates early embryo formation from which embryonic stem cells are derived. The source of these embryos has been in vitro fertility clinics where the

growth of the embryo has been stopped at the 5-day stage. Embryonic stem cells, from the center of the ball of cells of the blastocyst, are4E8CI4FALHA, which means they can differentiate into very many different cell types of the body[6]. Many adult stem cells have failed in this regard but some adult stem cells, which are rare, but present in bone marrow, blood, brain, skin, and other tissues, have proven to be multipotent, and even pluripotent meaning they can differentiate many or a few tissues.[6]

Many contend that the fertilized egg is an individual and that life begins with fusion of sperm and egg. If after cell division the two resulting cells are separated, naturally or mechanically, identical twins can result. So the fertilized egg is certainly not an individual. Also, both the sperm and the egg are living human cells prior to fertilization. The strongest ethical argument limiting the use of embryos seems to be the fact that, if left alone, embryos implanted into a mother would develop into unique human beings. However, limiting the scope of ESC research funding to a few embryos already having produced stem cells, while discarding thousands of unused embryos produced by couples within in vitro fertility clinics seems by many to be misguided.

On July 31, 2001, the House of Representatives of the United States voted for a broad ban on human cloning which included the ban on cloning for research

purposes, including cloning embryos that could be used for stem cell therapies. The ban includes penalties of 10 years in prison and fines of 1 million dollars for anyone who generates cloned human embryos[7]. As this was passed the Department of Health and Human Services stated that there were about 64 cell lines that could be used. Later this estimate was decreased to 24 or 25. However, many stem cell researchers doubt that any of these stem cell lines will be useful for therapy[8].

These political and legal issues complicate the existing technical hurdles to developing stem cell therapies. For example, there is a knotty problem using embryonic stem cells in an adult recipient. These stem cells are foreign tissue with foreign markers on the cell surface. These markers alert the immune system to muster an attack against the foreign cells[17]. This must be solved for effective embryonic stem cell therapies to become reality.

One remedy would be to use a cell nucleus from the recipient of therapy and switch it with the nucleus in a zygote. If this could be done all the cells produced from that cell would be genetically identical to the therapy recipient. That should mitigate some rejection problems. However, you may realize at this point that the procedure described here is cloning (therapeutic cloning). Such research is not eligible for federal dollars in the United States. However, very recently Zwanka et al successfully altered the genetic composition of a human stem cell by removing a disease-producing gene[16]. This very recent breakthrough could lead to the genetic manipulation of stem cells instead of cloning zygotes. It is a “workaround”. This had been done with mouse embryos earlier but the technical obstacles to genetic alteration of human stem cells prohibited the same kind of success in humans. Zwanka’s group used an electroporetic approach to allow for gene insertion by recombination within a healthy cell genome.[16]

The British, who have no laws against Embryonic Stem Cell Research, draw the line of life at implantation in the uterus[9], which takes a middle ground approach between life beginning at fertilization and life beginning at birth. In any event these issues will be of significant importance as we learn more about how embryonic stem cells differentiate, with laboratory manipulation, to viable adult cell types. It is likely that some successful procedures will be more readily approached with Embryonic Stem Cells and some with Adult Stem Cells. In addition to the ethical and political barriers, as you can see, there are significant technical and scientific problems, which must be solved.

Animal models, particularly rodents, have served valuably in much of the preliminary work on correcting neurodegeneration using stem cells. In 2002 American Scientists reported in Nature success in using stem cells from mouse embryos to cure Parkinson’s disease in rats/[10] Parkinson’s Disease affects about 5 million people worldwide and results from the degeneration of specialized brain neurons that produce the chemical dopamine. The most evident symptoms are movement and walking difficulties. Ron McKay of the National Institutes of Health transplanted a gene into a rodent embryonic stem cell that continuously reproduces, by cell

division, into a large number of the correct type of dopamine secreting nerve cells.[10] McKay’s group transplanted these cells into a rat with Parkinson’s symptoms. The animals resumed normal movements and stayed healthy for the equivalent to a lifetime for a human being.[10] Despite the fact that McKay was successful in rats we have a long way to go before such success occurs with humans. Rats and mice can be genetically engineered so that rejection of the tissue is not a problem. The adult human has an immune system that has to be sidestepped by therapeutic cloning or stem cell genetic recombination, and immune suppression[17]. And rat cells behave differently than human cells. McKay subsequently tried to do the same experiment by transplanting human embryonic stem cells into a monkey with Parkinsons but researchers were unable to get these stem cell derived dopamine neurons to secrete a large enough amount of dopamine. So some difficulties remain along with other problems discussed above.[11] The neurons within the brain, which die in Parkinsons disease, are all clumped together. So if the proper replacement neurons are cultured in large enough number, and if inflammation during transfer and immune rejection can be prevented, the cells can colonize the area in the proper number and allow for normal secretion of dopamine.

This problem becomes much more complex for polio-damaged neurons and their contingent muscles. Although we will talk about some strategies and therapies for polio we should understand that motor neurons from the anterior horn have their cell bodies in the spinal cord but long axons, sometimes over a meter long, must wend their way down, horizontally, or vertically to innervate microscopic skeletal muscle fibers, each of which is like a strand of hay in a haystack a mile away. To date, state of the art researchers in neuronal stem cell biology, like John Gage at the Salk Institute, cannot conceive of a way to guide these neurons to the muscle fibers to positively affect function, even if all the other problems can be solved.[12] Dr. Gage said to me, in response to a question I posed to him: “I agree that it is unlikely that in the damaged cord of any kind, that the transplanted cells will differentiate into functional neurons and send axons peripherally to the appropriate muscles.[12]” There is also the problem of regenerating skeletal muscle, which has died or become dysfunctional due to years of atrophy. We will consider these topics, but we must understand the additional difficulties that present for Polio, when compared to neurodegenerative Parkinsons and other brain cell function problems, where the neurons are all in one place.

Embryonic stem cells have some disadvantages. As mentioned, they are readily rejected by the immune system of the recipient. Also, they convert more often to tumors than do stem cells derived from adult tissues.[11]Recently stem cells have been isolated from a number of adult tissues (Figure 2). Some of these cells are monopotent, able to produce only one type of adult cell, but some adult stem cells are pluripotent[13]. Some cells, reported by Catherine Verifaillie, are pluripotent cells from bone marrow, which resemble stem cells but have other characteristics. She calls them Multipotent Adult Progenitor Cells or MAPC’s[22]. However, the work has not been published in the United States and has been criticized because it has not been repeated in other labs.[23] Nevertheless, there is an improving outlook for

the use of adult cells in the arsenal of therapeutic applications of adult tissue remediation, particularly for neuron cells in the brain and elsewhere. It is more difficult to isolate and characterize adult cells because they are a very small component of the adult tissue, and there seem to be several lines of cells mixed together. Adult stem cells have actually been used for years when bone marrow is transplanted for malignancies or bone marrow disease. Within the bone marrow are hematopoietic stem cells as well, which replace all of the types of blood cells, red and white. In addition it has been demonstrated that these stem cells also have multi and pluripotency and have even produced several other kinds of tissue cells including neurons.[14] Stem cells from an adult tissue type that can produce another different tissue type are said to be plastic, or exhibit plasticity. For example, nascent umbilical cord has stem cells that can produce human neurons[15].

Polio, as far as I can see, has never been mentioned in the Stem Cell literature as a disease that can be helped with Adult or Embryonic Stem Cell Therapy. There is spinal cord injury, diabetes, Parkinson’s disease, blood diseases and cancers (which have been treated successfully for 40 years with hematopoietic stem cells with marrow transplants), and even psychiatric illnesses, which result from poorly functioning brain cells, or damaged cells. Other diseases have also been mentioned as possible targets for repair including skeletal muscle in muscular dystrophy, and organ replacement. There are several aspects of old polio damage that may be amenable to improvement with stem-cell therapy. In talking to researchers, working in neuronal stem-cell therapy, some seem to feel the prospects for polio repair are very promising given enough time and research [18], while others express doubt, particlularly about guiding large numbers of the long motor neuron axons, feet, to its target muscle fibre [12] Muscle fibres themselves would also need to be replenished because of damage by atrophic processes over long periods of time.

this should be possible, in time, for human polio. [1] Work on stem-cell therapy for muscles that have been destroyed by dystrophin as in Muscular Dystrophy have to be cloned or genetically altered to remove the damaged genes. Work is progressing in this field. For polio there is no need to genetically alter stem cells because polio is not a genetic problem. Also, stem cells are present in the adult muscle tissue, which can produce viable muscle. It may be possible to guide stem cell derived neurons [Figure 5] using biological materials such as chondritin or other biolo based scaffolding [18]. Of course the shorter the distance from the cord to the muscle, the better the results should be. Post

Polio muscle damage can be much more disabling at the hip or above

rather than lower, for example at the calf.

Weakened hip, buttock, or paraspinal muscles (Figure 4a,b) can be very disabling, and are closer to the spinal cord. They provide support for muscle movement below. These critical muscles would be easier to tackle with neuron engraftment and could, if successful, provide significant support and improvement in function. So the easiest muscles to enervate could provide the most substantial improvement. But all this is still theoretical and many hurdles remain. Nevertheless, there are several ways that stem cell technology can be used to improve the outlook if the research and therapies bring clinical trials in the next 10 years. We are an aging population so time is controlling with regard to potential polio therapies.

Several signaling factors act between stem cells allowing them to differentiate and grow in vitro and in vivo. As stem cell research progresses we should uncover more of these growth and differentiation factors needed for cell differentiation, adaptation, connection to other cells within a tissue, and proper function. Imagine, if you will, a concoction of factors (some of which are already known) that can signal motor neurons to form synapses (connections) with new muscle fibers. Muscle signaling Cell Adhesion Molecules (CAM) attract the placement of synapses on muscle. Other factors may be used to guide cells to the proper muscle fibers. Without using stem cells some of these new derivative cellular hormones could be perfused into a trouble area. There are many possibilities; the only question is how long it will be until effective therapies are derived from Stem Cell Research.

Much of the advancement in stem cell therapies, and much of the realization of future promise will come as a result of lab work using model organisms like mice. A model of Spinal Cord damage, resulting in complete paralysis, has been mitigated in a mouse with neurons derived from stem cell engraftment so that after treatment the mouse uses its hind legs in walking motions where prior to treatment it could not. Rodents can be more easily engineered genetically and cloned so that rejection of implanted cell grafts does not occur. With a new model organism for polio, a mouse, reported in Polio Network News by Dr. Jubelt, there might be new opportunity to study post-polio rehabilitation with stem cell grafts. The possibility of using this polio mouse model did not escape my attention because of the success we have had using rodents to further our understanding of cell differentiation and the possibilities stem cell therapy.[24]

As this research progresses scientists are finding the cells that produce new signaling chemicals and cellular growth hormones as they examine how to prompt cells to differentiate in the lab.[19] It is conceivable that support cells can be implanted in the spinal cord alongside marginally functional motor neurons to provide nutrients and growth factors. Strangely, researchers have found stem cell muscle engrafts produce a lot of glial and astrocyte cells instead of muscle. Those are the very cells that support neurons. So these cells could be used for support of motor neurons either by fusion, or by secretion of helpful nutrient chemicals. Or, if the axons cannot reach distal muscle we could fuse new neurons, or other nerve support cells to existing giant motor units to support them, make them more healthy or even help them to produce and maintain more sprouts to muscle. This could result in a second recovery similar to the sprouting events that occurred during the first recovery from acute polio. All this is within the realm of existing stem cell

research and its future possibilities. Dr. Murashov, of Eastern Carolina Medical College, an active stem cell researcher, was happy to know this article or polio survivors was being written and he felt this should be discussed because of the possibilities he saw[25]. Dr. Murashov is working on spinal cord injury and is trying to produce sensory cells in the dorsal horn. With polio we need anterior horn cells where the effector muscles are further away and atrophied, or cell support for overburdened neurons living, but compromised or moribund. This is a new and an exciting prospect, but as with most polio research the need is grant money, access by researchers to stem cell lines, and increased interest in solving therapeutic problems..

News: Researchers Produce Motor Neurons From Embryonic Stem Cells, www.hhmi.org/news/jessell2.html

Department of Health and Human Services. June 2001. http://www.nih.gov/news/stemcell/ scireport.htm

3. M. Schuldiner et al.; “Effects of eight growth factors on the differentiation of cells derived

from human embryonic stem cells”; Proc. Natl. Acad. Sci. USA 97, 11307-11312; Oct. 10,

2000.

4. Stem Cells, A Primer, National Institutes of Health, September 2002

5. Stem Cells: Dream or Reality? Mariani, Sara, M., Highlights from the American Society of

Hematology 44th Annual Meeting, December 6-10, 2002, Philadelphia, Pennsylvania.

6. Stem Cells: Scientific Progress and Future Research Directions, National Institutes of

Health, Department of Human Services, 2001.

7. Ezzell, Carol, Cloning and The Law: “Will therapeutic cloning end up being against the

law”? Scientific American, November 24, 2001

8. Ezzell, Carol, Stem Cell Showstopper: “ Without Cloning They Aren’t Likely To Work”.

Scientific American, December 16, 2001

9.Mariani, Sara. Stem Cells: A Plenary Policy Forum: Highlights from the American Society

for Hematology 44th Annual Meeting; December 6-10, 2003, Philadelphia, Pennsylvania.

Medscape General Medicine 5(1), 2003

10. McKay, R. et al. Dopamine neurons derived from embryonic stem cells function in an

animal model of Parkinson’s Disease. Nature, 417, published on-line 20 June; doi:

10.1038/nature00900,(2002).

11. Pearson, Helen. Stem Cell Hopes Double. Nature Science Update, June 21, 2002

12. Fred H. Gage, Director of the Laboratory of Genetics of the Salk Institute at La Jolla,

California, Personal Communication, February 8, 2003.

13. Kaji, Eugene, H. and Leiden, Jeffrey, M. “Gene and Stem Cell Therapies” JAMA, Vol.

285, No 5, February 7, 2001

14. Bjornson CR, Rietze RL, Reynolds BA, Magli MC, Vescovi AL, “Turning Brain into

Blood: a hematopoietic fate adopted by adult neural stem cells in vivo. Science.

1999;283;:534-537.

15. Mitchell Kathy E. et al, “Matrix Cells from Wharton’s Jelly Form Neurons and Glia” Stem

Cells, 2003; 21:50-60 www.StemCells.com

16. Thomas P. Zwaka & James A. Thomson, Homologous recombination in human

embryonic stem cells. Nature Biotechnology, Published online: 10 February 2003,

doi:10.1038/nbt788,

www.nature.com/cgi-taf/DynaPage.taf?file=/nbt/journal/vaop/ncurrent/abs/nbt788.html 17. Drukker, Micha et al. “Characterization of the expression of MHC proteins in human embryonic stem cells” Vol. 99, Issue 15, 9864-9869, July 23, 2002

18. Murashov, Alexander K. Development of a Method for Generation of Spinal Cord

Neurons from Embryonic Stem Cells for Treatment of Spinal Cord Injury, Murashov’s Lab

Page, February 13, 2003, http://www.ecu.edu/physio/labakm/Stem%20Cells.htm

19. Villa, A. et.al. Genetic perpetuation of in vitro expanded human stem cells: Properties

and Therapeutic Potential., Brain Res. Bulletin 2002 Apr. 57: 789-94

20. Murashov, Alexander, M.D., Ph.D., Assistant Professor in Physiology, East Carolina

School of Medicine, Personal Communication

21.Cossu, Giulio, Mavilo, Fulvio, “ Myogenic Stem Cells for the therapy of primary myopathies: wishful thinking or therapeutic perspective?”

22. Verfaillie, Catherine, M. et al., “Pluripotency of mesenchymal stem cells derived from

adult marrow”, 418, 41 – 49 (2002).

23. Wade, Nicholas, “Scientists Make 2 Stem Cell Advances” New York Times, June 21,

2002.

24. “Mouse Model Developed for Post-Polio Research”, Polio Network News, Fall, 2002,

Vol. 18., No. 4

25. Personal Communication Dr.. Murashov follows:

Ed, Thank you for writing to me about this important matter. I am very pleased that you are going to bring up the issue of stem cell research and its possible practical implications for therapy of neurological disorders including old polio. While I am not working in animal model of polio, I am optimistic about future of stem cell research in general. By changing properties of stem cells (either, embryonic or adult) one may be able to generate sufficient quantities of specialized cells to replace malfunctioning or missing cells in the tissue. The fascinating plasticity of stem cells together with directed differentiation may help to establish functional integration between transplanted cells and the host tissue. To me the possibilities are almost unlimited. I think that stem cells may be used for treatment of old polio as well. Theoretically, support cells may be developed to support compromised motor neurons. Surprisingly, in some cases stem cells “sense” the problem in the organism and differentiate accordingly to repair the damage. Of course more studies must be done before proposing cell therapy in patients. Unfortunately, scarce funding in stem cell research significantly slows the progress in developing cell therapies. You are more then welcome to use images from my website.

Sincerely, Alex

Alexander K. Murashov, M.D., Ph.D. Assistant Professor in Physiology

East Carolina University School of Medicine

Brody Bldg. #6N-98, 600 Moye Blvd., Greenville, NC 27858 Phone: 252-816-3111 – Fax: 252-816-3460

Email: murashoval@mail.ecu.edu http://www.ecu.edu/physio/labakm End of references]

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<edward.bollenbach@snet.net>

Eddie Bollenbach is a Polio Survivor and teaches Microbiology, Biology, and Chemistry at Northwestern Connecticut Community Technical College.

See his articles on Polio Biology in our Website Library.

The onset of PPS affects lives in many ways. Not only are there the physical and psychological difficulties to be faced, but careers may also be at risk. Even if we are not high fliers, a job confers status, a sense of purpose and financial rewards. When those are threatened, it is only natural to react at first with denial, later on with anger and depression. And then there are the knock-on effects for family and friends.

Three years ago I took early retirement after nearly thirty years of working fulltime. The relief was enormous, but even so the absence of work left an emotional gap in my life which proved hard to fill. I have no regrets about retiring because realistically there was no other choice, but it was still a loss, and eventually I realised I had to let myself grieve a little, just as I would have done if a relationship had ended, however impossible it might have been.

In 1954 at the age of four, I contracted polio, which affected my legs and back. After intensive physiotherapy, I made a reasonable recovery, and regained my ability to walk, but the weakened muscles in my back meant that as I grew I began to develop a scoliosis, in my case a double curvature of the spine. Years of out-patient appointments, Xrays and different types of back supports followed. I underwent three operations to try to correct the curvatures, but the methods used in those days were fairly primitive, and none was particularly successful.

Despite my scoliosis and weakened legs, I went on to lead a fairly normal life,

though I was never able to participate much in games or strenuous physical activities. I suppose I was a typical polio survivor, for years in complete denial, fiercely independent and refusing to acknowledge I had a disability at all. To compensate for my physical limitations and disappointments in other areas of my life, I worked hard at school, and in the early 1970s won a place at university to study for joint degree in Librarianship and English Literature.

In 1971 I qualified as a librarian and subsequently worked full-time in libraries for nearly eighteen years, until, in 1989, I resigned my job as a college librarian. Unresolved differences and conflicts with the new style of college management were mainly to blame, and although these weren’t connected to my disability, I suspect a certain amount of bigotry and prejudice lay behind the way I was being treated. Impossible to prove, of course, and if I’d complained I would most likely have been subjected to hostile denials and accusations of having a chip on my shoulder. It was a long time ago, but a stressful and unhappy time.

Unable to find another library post, I embarked upon a six-month intensive post-graduate secretarial course. This I regarded as a stop-gap, as I fully intended to return to library work once the opportunity availed itself. But soon after qualifying and finding my first job as a secretary the recession of the early 1990s struck and I was stuck. By the time the recession was over, I was well into my forties and my health was declining. As a secretary I had far less autonomy than I’d enjoyed as a college librarian. Then it was possible to pace myself plan my work in order to avoid overloads wherever possible, and there were staff to whom I could delegate. Now I was the one to whom the work

was being delegated and there was nothing below me apart from the floor. The people I was working for were all making conflicting demands on me: their deadlines became my deadlines, their panics my panics. I consequently found the work a lot more stressful because I was no longer in control of my own workload.

In 1992 I began working in an academic department of a university helping with the administration of post-graduate courses. The post-graduate office was underfunded and understaffed. It was consequently a very pressurised job, and I was continually juggling with a wide range of duties and acting as trouble-shooter and peace-maker to mature students many of whom were experiencing problems of one sort or the other. Occasionally I was aware of an inner voice telling me ‘This is all getting too much for you’ but I did nothing about it and attributed my increasing tiredness to the pressures of the job. From about 1995 my problems intensified. I blamed this on a gynaecological condition, and in 1996 underwent a hysterectomy. The complete recovery I anticipated never materialised and instead my energy levels continued to plummet. I was having difficulties in concentrating and applying myself to tasks and seemed less able to cope with the pressures of the job and the stress that went with it. My muscles felt weaker, I could no longer walk as far and gradients were particularly difficult.

During the winter of 1997/8 I experienced what felt like a low-grade flu: my throat was inflamed, I went hot and cold in turns and felt very unwell for weeks. By this time I could no longer pretend even to myself that nothing was wrong. I’d heard of post-polio syndrome years before in connection with the Earl of Snowdon, but dismissed it at the time

as something which couldn’t possibly happen to me. Now I wrote to the BPF, obtained some articles from them and the Web and went off to see my GP, who’d never heard of PPS (what a surprise!) but after doing some research for herself decided some of my problems ‘could’ be polio-related. She suggested that as there was no cure for PPS that I should try to rest more and use selfmanagement techniques to try to counteract my difficulties. She did not offer to refer me to a consultant.

To add to my problems the department where I worked was now in trouble, following an ill-fated merger with two other departments. There were financial difficulties, morale was low, and many staff, including myself, were under threat of compulsory redundancy. Although this threat was eventually lifted, many staff had already taken voluntary severance, increasing the pressure on those like me who remained.

Looking back now I realise this was the point where I should have looked for a part-time job, which might have enabled me to carry on working for longer than I did. Instead, I took another full-time position, still in the University, but in central administration. I reckoned that without direct contact with students, a more reasonable workload and fewer responsibilities I could continue to work full-time. I was mistaken. To begin with, I was utterly exhausted from the stresses of the old job and trying to learn new routines and skills when I was already worn-out only exacerbated my problems. I simply didn’t have the stamina to make a success of it and my health continued to decline.

For another eighteen months I struggled on, by which time I was so exhausted by the end of the week it was as much as I could do to get into the office on Fridays,

never mind achieve anything once there. Weekends were spent recovering. My GP now referred me to a consultant, but I was faced with a waiting-list of six months.

It was at this point that my elderly mother was admitted to hospital to have what was thought at the time to be a straightforward bladder operation. Unfortunately, she developed complications, which meant she underwent a second operation shortly afterwards. The stress of trying to work, cope at home, visit my mother in hospital and deal with concerned family and friends proved the final straw. I was forced to go to my GP and ask to be signed off for a month.

Unable to wait to see the consultant on the NHS, I arranged a private appointment with him. Although this enabled me to be seen quickly, the consultation turned out to be a disaster. I suppose I was naïve, but I was totally unprepared for the lack of concern verging on hostility which this man displayed. He turned out to have no understanding of, or interest in, PPS which he informed me ‘only affects the body from the neck down’ and which he regarded as being the same thing as what he called ‘post-polio muscular atrophy’. He said I showed no sign of this, nor of any progressive disability directly related to the old polio. (How could he know this when he’d never seen me before?) He barked questions at me, but didn’t listen to the answers. Any symptom I mentioned which did not fit into his views was dismissed. My chronic fatigue and cognitive problems were the result of ‘psychological problems’ and he would recommend to my GP that I took some ‘mood

enhancing drugs’ (e.g., antidepressants.) It was evident he regarded me as a neurotic, menopausal

female who ought to pull herself together. He refused to make any recommendations about early retirement on medical grounds until I’d had some EMG tests and suggested that as these would probably prove negative I should carry on working until I was 60 in order to enjoy the company of ‘congenial colleagues.’[!!] I left the consulting room utterly downcast and feeling it was somehow my fault I was ill. Later on my depression turned to anger for allowing him to intimidate me with his arrogance and patronising attitude. (I saw this consultant in April 2000, and was not called for the EMG tests until March 2003. Had I chosen to remain under his ‘care’, I would have been forced to carry on working up that date, with no guarantee even then that he would have supported my application. The only alternative would have been to resign without benefit of pension.)

Despite this setback, following my mother’s recovery and my return to work, I made the decision to ‘come clean’ with my employers and admit I had a problem. They were extremely sympathetic, taking work away from me and supporting my application for early retirement. Because of the continuing deterioration in my health, I decided part-time work was no longer a realistic option. I was sent to Occupational Health for assessment, but the consultant there turned out to be as useless and as hostile as the first one, concurring with the opinion that I should take antidepressants and continue to work. It took me another nine months to find a consultant who would support my application and I was eventually able to retire from my job in February 2001. For the last year of my working life I was undoubtedly a “lame duck” employee.

What lessons can others who may be in similar positions learn from this? First of

all, anyone who is experiencing difficulties at work which may be caused by post-polio symptoms, should not ignore them, but go to their GP and insist on being referred to a consultant. Although PPS is not curable, a good consultant may be able to suggest measures to help slow down the decline and enable someone to go on working for longer. If retirement is the only option, a supportive report from a consultant may be essential in order to make a case for retiring on grounds of ill-health. However, as I discovered, finding a suitable consultant is not be easy, and this is why it is important to begin the process as soon as possible. There will probably be a waiting-list of at least six months until the first appointment and this will not be the end of the story, because an instant diagnosis is unlikely and further tests may be required which will take more time. Seeing a consultant privately if this is affordable will hasten the process, but not guarantee better treatment.

Another reason for seeing a consultant is to avoid having to rely solely on the opinion of an occupational health doctor. People with chronic illnesses I have talked to since have all had negative experiences when referred to such doctors by their employers. Although occupational health staff are presented to the employee as being neutral, the fact is that they are being paid by the employer and will be looking for a solution which while conforming to employment law will be the best solution from the employer’s point of view. Apart from this, the doctor will probably have no specialised knowledge of the condition and will only recommend medical retirement if convinced there is no long-term prospect of recovery. If anyone out there has had a more positive experience than mine I do hope they will feel able to share it.

If a consultant is not sympathetic the best advice I can give is to ditch him or her, and look for someone else rather than trying to complain, or attempting to change the mind of someone with intractable opinions. Neither is likely to be worth the time or energy. If a suitable consultant can’t be found within a health authority it is usually possible to go outside as long as the GP will provide a referral and the consultant agrees to see the patient. (I am currently seeing a neurologist outside of my own health authority.)

Whatever the problems at work, it is important to start thinking about realistic solutions to them sooner rather than later. There are no ideal solutions, nor decisions which will turn out to be absolutely right or totally wrong. We can only do is what is possible and what seems best at the time.

Dinah Foweraker Avon and Somerset, UK March 2004

I am organising a Sunday Lunch Meeting, 11.30 to 3.30 on Sunday 20th June 2004 in the Bristol area, close to the M5. Venue will depend on numbers wanting to join in, either house or local pub. Hilary Hallam will be joining us en route back to Lincoln after the Exeter ME/PPS Conference [See back page].

If you would like to join us then please email me dinah@FOWERAKER.FSNET.CO.UK or drop me a line with your name, address and phone number and I will send you the details. Please address it to Dinah Foweraker c/o LPPN – 69 Woodvale Ave, Lincoln, LN6 3RD.

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I seem to have arrived at another one of those dreaded mile-stones of coping with Post Polio Syndrome.

It seems I have always had some problems sleeping as far back as I can remember. (And my memory only goes back to around second grade or so as I blocked most of it before, during and shortly after having had polio)

Mostly, it was a dislike of sleep. I always felt it was a waste of time and so would sit up for hours after bedtime just watching the moon make is slow, silent journey across the sky. I was always the first one up in the house as I relished getting outside as the sun crept up over the horizon.

There was a period of time when I really slept. I slept soundly and needed two or three alarm clocks set within five minutes of each other to wake me in time to dash off to work. But, then I was working, going to night school and keeping up a social life.

Since I have been dealing with PPS over the past 11 years or so I found I have periods where sleep seems good. I have little trouble falling asleep and awake refreshed. Over the past few years these have become extremely rare occasions.

I have become used to having my sleep disrupted by Charlie horses [cramps] in either my calf or the arch of my foot; especially if I have been ‘mis-behaving’ and on my feet much more than I should be. As, I have also become used to tossing and turning on nights after a day or two of general ‘over-doing’ as my mind takes over and ponders every

possible thing from a to z.

But, the last six months or so this has changed. My sleep problems are different. I seldom wake up feeling really refreshed and ready to at least take on the morning. I am awake, but find myself wanting to stay in bed; maybe if I do I’ll feel more refreshed. Yet, if I do this doesn’t really work either so I drag myself up and greet the day. My attention span is shorter than ever, and I seem to lack the motivation to get busy on much of anything.

I only rarely waken with a head-ache [which could be not getting rid of carbon dioxide properly] but I do wake up during the night often with a start or due to a dream of nightmarish quality. Sometimes it seems my heart is racing; at others I am awake but can’t seem to move for some moments.

There are nights I’d swear I slept soundly, but still don’t feel refreshed. There are others where I am up almost every hour or so from midnight on. On these nights I usually give up and stay up from 4 or 5am.

The worst thing is the daytime fatigue. It zaps me. I lack motivation to start projects, much less finish them. And this does lead to a mild depression which then feeds on itself.

My voice is also changing. Usually it is the same in the morning as it always has been, but come afternoon or evening it takes on a husk-iness and at times is so soft that even if I think I am yelling no one hears me. This is very frustrating to put it mildly.

All of this led me to go get it checked out and long story short I am going in for a sleep study the end of this month.

A part of me feels I am premature. It is this part that really is sort of hoping the sleep doctor gets back to me in mid-May telling me I don’t need any help, that I don’t really have any kind of sleep apnea.

This is normal for me. I just don’t want to be any ‘worse’. I try to deny this possibility every step of the way. But, I also try to read, listen to others and taking a deep breath go get it checked out.

In my reading I made many discoveries. I explored why the preference is for us to get a bi-pap rather than a c-pap. I’ll share what I’ve learned over the past months. Remember I’m not a doctor or medical person. I’ve asked my doctors a lot of questions, I’ve asked members of some of the support lists for information from those ahead of me on this part of our PPS journey, plus, I’ve done a lot of web-searching to fill in the blanks….. Here are some of the questions with the answers I’ve found.

A sleep study is done when it becomes more and more difficult to get a good night’s sleep. It is time to think of having one when you start awakening feeling ‘unrested’, find yourself being more tired than usual, start to have nightmares, wake up at times during the night with a start, and maybe havea headache when awakening. In short when you know something isn’t working right it is time to go to your doctor, who, if he/she agrees that it may be time will refer you to a sleep doctor, who then checks you out and determines if a sleep study is needed.

NOTE: A surprise titbit my sleep doctor gave me while examining/talking with

me. She suspects my problems with sleep apnea are at an ‘early stage’.Now, of course, my reaction is. “good I can come back later”. Her answer to this is that she has found that if sleep problems are treated earlier on the treatment works better and longer then when the person waits until it is really a major problem.

This answer can vary even among ppser’s. I have found through studying the various articles on PPS and sleep apnea that it isn’t unusual for many of us to develop some form of sleep apnea.

One form is obstructive apnea. (The most ‘usual’ sleep apnea treated these days) This can be caused by weakened neck, tongue muscles, or even other problems that non-ppser’s can have.

Another form is central apnea.In the case of being PPS related this is directly related to Bulbar Polio and involves a problem with the nerve relay system where the brain literally misses giving us the instruction to breathe. It is important to mention that we could have had bulbar involvement at the time of our original polio without it showing up with any significant breathing problems at the time. Just because we weren’t told we had bulbar polio or if we did that it was ‘mild’ doesn’t mean we didn’t have it and that we will be positively be ‘free” of running into this problem. As with so much of what is being learned now about how our original polio affected our whole body; not just the part that ‘showed a problem’; it is becoming more and more evident that this can also be true of the involvement of the bulbar area of the brain.

A third area that is causing many of us

PPSer’s problems is our increasing muscle weakness. It is simply getting more and more difficult to breath… this will be more of a problem at night during REM sleep when all muscles but our diaphragm is ‘paralyzed’.During the day we are using other muscles to help, along with gravity.

There a lot of very good websites that explain what a c-pap, bi-pap and a bipap+ machine are and what they do. Just type bi-pap into Google and you’ll be surprised at how much information there is.

Here is a brief answer to this question:

A c-pap is a positive pressure air machine that simply gives the user a constant supply of air pumped into the air wave passages to keep these unobstructed. This helps to keep a lazy tongue from slipping back and blocking the way, and/or to help weakened throat muscles from collapsing during the deep REM sleep.

The user has to push the air back out on their own against the constant pressure.

THIS is why a bi-pap is preferred for ppser’s. While a c-pap may work at first, over time already weak/overused breathing muscles will find it increasingly difficult to push the air out unaided.

A bi-pap helps with this. This machine provides both positive and negative pressure… pushing air in and helping to bring it back out thus assuring that the person has good breathing throughout the night and enables them to get the much needed REM sleep.

The Bi-pap+ machine also has a sensor that picks up when the person doesn’t

breath in for x amount of time (so many seconds). It will kick in and breathe for the person. This is needed with central apnea.

These two questions address my biggest fears. So much so that I asked both my sleep doctor and new pps doctor about it and these are the answers they have given me.

1. The ‘noise’ is a soft continuous sound

that is more like ‘white noise’ (I still have

my doubts, but will find out soon enough

2. The mask really isn’t that

uncomfortable.

3. But the main thing they tell me is that

after a few nights sleeping with it I will

feel so much better and will sleep so

much better it will fast become a ‘good

friend’.

Some other PPS-ers already using either a c-pap or a bi-pap have also confirmed the above.

One woman said it most poetically,

Now this I can understand.

Two PPSers who are partners made me laugh in an email the other day when they jokingly asked me if I thought they did single machines with two hoses.

EllenRiddle@sbcglobal.net

or write to me c/o the LincsPPN address. I would love to hear from you.

Linc Pin Volume 4 Issue 9 Read More »

The muscle being tested….
0	Zero	Has no muscle twitch.
1	Trace	Has some muscle twitch that can be felt.
2	Poor	Is only able to move the limb when gravity is eliminated.
3	Fair	Is able to move the limb against gravity.
4	Good	Is able to provide good resistance against the examiner.
5	Normal	Is as strong as the maximum resistance provided by the examiner.

Person 1	Hip Extensor Grade 5, Knee Extensor Grade 4, and Ankle Plantar Flexor Grade 4.All key muscles in this person are greater than 4, therefore he can walk safely without a brace.Hip Extensor Grade 5, Knee Extensor Grade 0, and Ankle Plantar
Answer
Person 2

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HAIR	DRINKS HOUSE	CYCLE CYCLE CYCLE
FEW FEW MENTION MENTION	WEAR LONG	123456789 1SAFETY9 123456789