Newsletter

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 12 – August 2000

 

CONTENTS

 

Editorial by Hilary Hallam.

 

Summary of Anesthesia Issue for Post-Polio Patients by Selma Harrison Calmes, MD Chair and Clinical Professor of Anesthesiology, UCLA.

 

Trip to the USA 2000 by Hilary Hallam.

 

Post-Polio Population Statistics – A Review by Chris Salter.

 

Eyelid trouble by Mary Ellen Hemby.

 

Dr. Jacquelin Perry’s comment on Hip replacement surgery with thanks to Mary Clarke

 

Atwood, Ranchos Los Amigos PPS Support Group, California.

 

Collective Ability – Information Leaflets.

 

Dr. Henry writes about “Henry’s Helpful Hints for Living with Post-Polio Syndrome”. Henry

 

Holland, M.D.

 

My experience of PPS by Janice Eary.

 

Lincolnshire Post-Polio Library Articles added since last newsletter with grateful thanks to the authors.

 

Benefit Article by Cathi Penman.

 

Annual General Meeting – Saturday 30th September 2000.

 

Contact Information.

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

It’s now August as I finish this newsletter and I did think we would be in the middle of summer by now! The trip went very well, report and diary starting page 4. The only changes I would make are more days at each part of the journey to allow more time for rest to restore energy levels.

 

Back to the UK and as you can imagine a few days of doing virtually nothing. Gradually picking up on the workload and a little concerned to find that it is now taking me about 20% longer to do jobs compared with before the trip, e.g. more rest time needed in between parts of doing things. If you would like to help with any aspect of our work then please get in touch. There are many small jobs that can be done without coming to Lincoln, e.g. reading a polio survivors book / medical article / other groups newsletters and writing a precis on it. Or come to Lincoln and help in the office with filing / databasing / printing envelopes / making up new information packs / etc. Or maybe you have some ideas that we have not yet thought of.

 

The AGM is now just over 8 weeks away – information on the back pages. I would ask that all members return the nomination / voting slips as soon as they can so that we have as much advance notice as possible on numbers etc. If you would like any more information please ring. Friday and Saturday evenings at the Holiday Inn Express last year were great with lots of information being shared, and lots of laughter. Comments afterwards were that this was the first time many had been with other polio survivors and it was such a relief to know that they really were not alone with their problems and how easy it was to discuss things openly with another polio survivor that you had been keeping to yourself for a long time. Also it’s good for carers to get together with other carers. We look forward to meeting more of you, your family and friends. Everyone is welcome to the events following the AGM.

 

Dr. Betty Dowsett to speak in Lincoln. MESH – ME Self Help – group in Lincoln have arranged for Dr. Betty Dowsett to speak in Lincoln on Saturday 16th September 1.45 to 4.00 p.m., at the Ruston Marconi Sports Ground. Cost is £1 includes tea coffee and biscuits. This is on the A1434 just west of the junction with the B1190 to Doddington. This will cover ME and polio. All LincsPPN members friends, etc are welcome. Dr. Betty Dowsett is a member of the LincsPPN and at the last minute was able to join us at last years AGM for a few hours. She is a retired microbiologist who has worked with polio and ME for many years and her talks are excellent. The venue is only a mile from my house so you could meet here earlier and go together. MESH would like to know numbers so please can you ring or drop me a line if you are coming.

 

In the last issue I told you about our new Polo shirts by Snickers Workwear who donated the artwork of our embroidered logo. Richard and I wore ours at the Conference and later and they were much admired. They are white polyester cotton 65/35%, collar, three button, shirts with a breast pocket located embroidered logo of 13,500 stitches as the front of this newsletter [refers to the hardcopy edition of this newsletter]. Sizes available are S 34 – 36, M 37 – 39, L 40 – 42, XL 43 – 45, XXL 46 – 48, XXXL 49 – 51 and are priced at £10 with the Logo on, and £13.50 if you wish your Christian Name to appear below this. Please send your orders and cheques, which include postage direct to you, to the LincsPPN.

 

Meeting with LHA and their GP advisor. I had a meeting last week with Deborah Jaines of Lincoinshire Health and Dr. Calverley their GP advisor. He is also a co-chair of a PCG. After some discussion Dr. Calverley said that if a polio survivor went to him with symptoms of pain, weakness, fatigue and functional decline whether or not he could find weakness with Manual Muscle Testing he would refer them to see a neurologist. To get better services we would need to work with the Neurological Clinic to agree on what improvements could be made. Then formulate a business plan to put forward along with all the others coming from other departments requesting funding for the changes. We would need statistics of how many polio survivors there are in Lincolnshire, evidence on the percentage likely to need these services, what percentage this was of other neurological conditions and what this would cost.

 

Dr. Calverley said that initially this would be a substantial cost as most patients knowing of this new clinic would wish to be reassessed. There would be no saving on money being wasted on the

 

’rounds of the hospital departments’ until such time as all current patients had been through the clinic.

 

We are suggesting a permanent and holistic Lincolnshire Neurological Assessment and Case Managing Clinic for all neurological conditions, with patients that need specialist help being referred to the appropriate specialist Neurologist / Hospital but where possible treatment being provided locally. The Neurosciences Forum has arranged for a Questionnaire to be sent out to all GP’s – How many patients have you with the following conditions? Figures are hoped to be in by the end of August. At the next meeting of the NF – Aug 16th – we will be discussing the result of this meeting and requesting a meeting with the Neurological Clinic.

 

Remember this is your newsletter and we welcome stories, hints and tips and other bits from our members. If you have any suggestions as to subjects you would like to see articles on then add that to your AGM slip. We look forward to hearing from you.

 

Summary of Anesthesia Issue for Post-Polio Patients – Updated 13th June 2000*

 

by Selma Harrison Calmes, MD

 

Chair and Clinical Professor of Anesthesiology, UCLA.

 

Polio results in wide-spread neural changes, not just destruction of the spinal cord anterior horn cells (motor nerves) 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 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 junction during the original disease, and there are extensive

 

anatomic changes there, even in seemingly normal muscles, which makes for greater

 

sensitivity to relaxants. Also, many patients have a significant decrease in total muscle mass.

 

Neuromuscular monitoring intra-op helps prevent overdose of muscle relaxants. Overdose

 

has been a frequent problem.

 

3. Succinylcholine often cases severe, generalised muscle pain post-op. It’s useful if this can be

 

avoided, if possible. There is not 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 post-op 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 gastroesophageal reflux, tachyarrhythmias and, sometimes, difficulty maintaining BP when

 

anesthetics are given.

 

6. Patients who use ventilators often have worsening of ventilatory function post-op, and some

 

patients who have not needed ventilation pre-op have had to go onto a ventilator (including

 

long-term use) post-op. The marker for real difficulty is thought to be a VC <1.0 litre. Such a patient needs good pulmonary preparation pre-op. Another ventilation risk relates to obstructive sleep apnea in the post-op 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 fractured 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.

 

Please feel free to contact me if you have any questions. This brief summary may not cover everything you want to know.

 

Selma Harrison Calmes MD

 

Chair and Clinical Professor of Anesthesiology, University of California, Los Angeles,

 

Olive View, UCLA Medical Centre, 14445 Olive View Drive,

 

3A-113 Slymar, California, 91342-1495 U.S.A. Tel. +1(818) 364-4350

 

Email – scalmes@dhs.co.la.ca.us

 

* This is an updated summary of a presentation given by the author at the GINI/IPN Eighth

 

International Post-Polio & Independent Living Conference.

 

Trip to the USA 2000

 

by Hilary Hallam.

 

Firstly, can say a big thank you to all the people who helped make this trip possible. Without the donations of money, the use of Richard’s truck, the meals we were given and taken out to, the sightseeing tours, comfortable beds for the night etc., this trip – as with the four previous PPS conferences I have attended – would not have been possible. Lots of discussions took place with polio survivors, PPS specialists and PPS support group leaders all sharing information on how we can help polio survivors with post polio symptoms improve the quality of their lives and the services they are getting and get this message out across the world. So as always, watch this space.

 

Secondly for those on the Internet I must apologise for not writing this up and posting it in sections as I travelled. I do not have a lap top computer and the first thing learned during this trip is that I had less energy available. I use an ergonomic keyboard in the U.K. and that allows me to type for longer, palm resting my left hand, with my wrists in line with my arms. Typing on a straight keyboard with twisted wrists is much harder and a few lines was all I could manage when I could borrow someone else’s computer. I tried writing it out long hand but that was also tiring and I had to make do with notes on each day and as fatigued even that was difficult.

 

The main reason for the trip was to speak and hear others talks at the 8th GINI International PostPolio and Independent Living Conference in St. Louis, Missouri. Having a presentation accepted at such a prestigious conference was a great privilege. I was asked to do a 12 minute summary of the presentation on the Thursday at the end of a talk by Dr. Anne Gawne <acgawne@dhr.state.ga.us> and her team from the Roosevelt Warm Springs Rehabilitation Institute Post Polio Clinic, on the roles of a multi-disciplinary PPS clinic, as well as the full hour presentation on Saturday. More on this later.

 

To make most use of the cost of the flight to the States I attended other PPS events, talked with many medical professionals and as many polio survivors as I could fit into the itinery. Nearly all

 

polio survivors I met agreed that sharing information across the world is paramount to our learning about our condition. We can benefit so much from listening to and watching how others manage activities and it is easier to relate your problems to how someone else copes than it is to be told you have to do this. There is much advice out there and it is up to you when and if you take any or all of the advice given. Ultimately, you have to make your own decisions. No-one can make you do anything you are not ready to do. I would however like to comment that the more I have learned and the more I have put into practice, using aids and taking advice, the better I have managed my life and the more I get out of it, despite some deterioration. I only wish I had learned about PPS years earlier.

 

The main theme that came through from others every day – from PPS Specialists and Polio Survivors who are NOT in denial of the existence of their own PPS symptoms – is that we can manage our lives better doing MORE each day of what we can do and want to do, and delay further deterioration if:

 

• We learn about polio and its late effects and tactfully provide health professionals that we

 

see – who probably have not had more than a few minutes lecture on the condition of polio

 

and nothing on its late effects – with good quality medical articles on polio and PPS.

 

• We assess ourselves and our lives from pre-polio, through polio and recovery, our stable

 

period of functioning, and look critically at how we do our daily activities, when these

 

started to change, how they have changed and provide this information in an easily assimilated format, e.g. Polio Time Line and a short double spaced list of specific changes of action that show the weaknesses we are reporting.

 

• We use aids and equipment to prevent or lessen repetitive action and overstraining of weak

 

and weakening muscles.

 

• We listen to our bodies and let the pain and fatigue we get be our guideline to what is too

 

much at once – halving the time we do activities till we find out optimum working times. For

 

instance this could vary from minutes when doing a repetitive action like dusting or

 

hoovering to an hour when typing using an ergonomic keyboard and palm resting and typing

 

in phrases.

 

• We then pace out our activities with working periods and rest periods with the ‘working’

 

times getting shorter and the resting times getting longer.

 

• We give ourselves 10 energy tokens a day and 70 a week – energy tokens are personal and

 

only you can decide what a token, half token is for you.

 

• We plan our week ahead fitting in what we have to do, then what we want to do, and

 

remembering that a 15 token day to take in a hospital appointment means that the day or

 

days after you will have less tokens to play with.

 

• We communicate with our family, friends and work colleagues – and this means taking time

 

to explain what polio and post-polio are and how with a little help you could improve your

 

lifestyle; and not only tell them how we feel about what is happening but probably more

 

important let them tell us how what is happening to us affects them and how they feel.

 

• We join support groups – to get newsletters, to go to meetings, to find penpals with similar

 

interests to you, on the net, on the phone, by post. in person, just one or all of these. Not

 

being ‘alone’ with our problems anymore and being able to ‘let off steam’ to someone who

 

understands, reduces tension. We must ask questions that concern us and share the

 

information received, it is unlikely that you are the only one with that question.

 

• And probably the most important of all is understanding that it is not ‘giving in’ to change

 

our lifestyle and use aids that are recommended, it’s sensible advice. Living with a chronic

 

condition means managing your life to the best advantage for yourself, your family and

 

friends. Being stubborn and struggling in pain and causing yourself possibly further

 

unnecessary early deterioration, pain and fatigue does not help you, or help your family and

 

friends cope watching you suffering.

 

BUT TO ACHIEVE THIS WE NEED A full, holistic, multi-disciplinary assessment by specialists with knowledge and experience of polio and its late effects.

 

Recognised PPS Clinics in many parts of the World provide this and it’s well documented in medical articles on assessment for PPS as necessary.

 

UK polio survivors need a full assessment that categorises all our symptoms. Whether they are PPS, other conditions that affect us more because we have polio damage to our body, or other non related conditions.

 

PPS is by diagnosis of exclusion – symptoms that we have are also seen in many other conditions – its important that other conditions are not missed.

 

We need a clinic or dedicated team that can case manage us and ensure that if we are sent to other specialists that the full implications of our polio are passed on, e.g. our tolerance to some drugs and anesthetics being considerably lower than the ‘norm’. Our GP’s do not have the time or resources to keep on dealing with new symptoms, more deterioration, they can only refer us on to specialists. With each new symptom we seem to have to start from scratch waiting for that appointment, then the tests, then the results. We should be being referred back to the main clinic that is case managing us for a review.

 

The earlier we are provided with high quality advice, treatment, aids and equipment, the earlier we can start to manage our own lives to greater advantage. We all want to live as long as possible doing as much as possible but our polio and its late effects have changed the plan we had in mind. We have been lucky in that many of us did recover and have lived better lives than we would have had we stayed as we were at the initial onset of our polio but this is no consolation. We have already been through the ‘mill’ once with our polio and we did not know about or expect late effects to drastically alter our lives starting for many of us as early as our 40’s.

 

Almost every UK member or Polio survivor from the UK that gets in touch with us has done the ’rounds of the hospital departments’ with as much as 80% of the cost of these appointments and tests a total waste of money.

 

Many are contacting us with copies of reports from Consultants for Court Cases or Benefits Doctors that have assessed them. These reports show a considerable lack of knowledge of polio and its late effects and often contain inaccurate statements and where MMT has taken place grossly overgrade actual muscle ability. In some cases the Benefits Doctor’s one off home visit report disagrees with that of other health professionals, including Consultants that have spent time assessing, testing and diagnosing. Many are being put through extra stress and financial hardship as they struggle with their PPS appealing decisions and going to Tribunals.

 

If multi-disciplinary assessment was available then correct and comprehensive medical reports would be available so that we could get the appropriate aids, equipment and benefits that we need to manage our lives.

 

As this is not available then together we must campaign to have the wasted money re-routed and now. We need your help to send us some good examples showing the above.

 

Diary of the Trip.

 

Outward Bound.

 

I left Lincoln on 23rd May 2000 handing over a huge box of paperwork to our Chairperson Christine Ayre and Committee Member Myra McManus and drove to Kingston-upon-Thames, Surrey to stay overnight with Tony Meladio. Tony came with me to Gatwick Airport the next day and valet parked my car at his house for the duration of my trip. Gatwick Airport parking would have cost £180!! He later flew to St. Louis for the GINI conference and Branson and then visited with other polio survivors in the U.S. before returning home and will be writing his story for the next issue.

 

I booked a British Airways flight through www.airnet-uk.com [since this was written the domain mentioned has ceased] as it was slightly cheaper on flight cost and insurance, but on checking with BA found that my taking my electric scooter had not been recorded! However with excellent help from a BA rep on the phone in Scotland, I was soon able to give them the information they needed on the scooter. I asked to use it for as long as possible and when I arrived early at Gatwick and checked my suitcases in I was allowed to retain the scooter to go to the South Terminal to collect my International Driving Licence from Europcar and thank Janine who arranged to do this out of normal hours for which I am most grateful. I then returned to the Departure Lounge to look at the shops and suddenly was surrounded by BA staff who wished to make my and their life as easy as possible in getting my scooter loaded on the aircraft. They offered me the use of the Club Lounge and asked if they could collect my scooter and me in an electric buggy 90 mins pre flight time. I agreed although in Tampa when returning we kept our scooters right to the gate and only gave them up as we pre-boarded.

 

In the Club Lounge I enjoyed a glass of fresh orange and was soon chatting with a lovely lady from Switzerland travelling with her grandson to America and yes – she had had polio too. At the age of 16 she became paralysed and was unable to become the ballerina she had hoped to be. She recovered well, had heard of post-polio but said she had no problems. That was until she read a bit of information on the symptoms and then she said she had been having days of total fatigue when she could not get out of bed, and had had swallowing problems ever since polio. A chance meeting. She was going to be staying south of Atlanta later on in the summer and I was able to give her Dr. Gawne’s address and phone number.

 

The flight was a long nine and a half hours and I spent much of it chatting to Marion Woodward from Florida who was travelling wearing a body brace following an accident a couple of years ago. We have emailed and spoken on the phone since and Marion has passed PPS information to her relatives that are medical professionals. We did a backwards loop just before New York to wait for a thunderstorm to pass, and later many nearby had a giggle when we were coming in to land and as we hit a large white fluffy cloud there was a clunk and Marion said, “gosh that was a hard cloud”, later realised to be the undercarriage.

 

‘Base Camp’ Tampa, Florida.

 

It took a long time to get my cases – although my scooter was back and working almost immediately. Then I was through the doors and met by Richard Boone on his scooter. He and I had been corresponding almost daily on the Internet for two and a half years and he said if you fly into Tampa we can drive to St. Louis in my truck and visit Warm Springs and others en route. This was the most cost effective way of meeting more people so I readily agreed.

 

Richard caught polio at the age of 6 months in 1951 and wore a long and short leg brace but as with many got rid of them by his late teens. In the last few years he has had to retire as a jeweller and as he become weaker in arms and legs get a scooter and hoist for his truck. Just over a year ago following a fall where he broke a bone in his hand he decided that he needed a full left leg caliper again. His ‘better’ right arm and leg are also weakening. He has also developed a benign essential tremor in his left arm which varies from nothing to moderate at different times of the day (anyone else with this please get in touch).

 

We drove off and within minutes we were over water and I saw a pelican fly past – something I had wanted to see – and later on the Skyway over Tampa Bay I saw many more pelicans. We were soon back at his home in Palmetto, suitcases unloaded, and we crashed out in a cool breeze thanks to the air conditioning.

 

Next day we went in search of some fruit juice and the day after we visited a couple of small stores. This does not sound much but we were still in ‘catch up on energy tokens mode’ and that was all the energy we had available, and overdoing would have meant less energy for Saturday and Sunday. Luckily chatting does not take up too much energy.

 

Saturday was the Florida State Muzzle Loading Championship at the Wishful Thinking Farm at Myakka City, Florida. Richard was a founding member and competed in shoots till 1996. He has built five Pennsylvania 18th Century style long barrelled flintlock rifles and three pistols and has done quite a bit of restoration work on antique originals. We had packed a few snacks and drinks in the cooler bags and off we went. The last few miles on sugar sand tracks, with many ruts. We arrived at the shoot situated in woodland and although it was about 90 degrees, the trees gave us some cover and there was a lovely breeze. We watched the competition, and spent some time talking to Steve and Jean Knight who have a Suttlers business. Steve makes arrowheads and does flint knapping and Jean makes clothes for re-enactments. Steve later gave us a demonstration of hawk and knife throwing…. No need to call the RSPCA, hawk is tomahawk… yes I wondered too. What was the most important thing I learned from this day? When you go to a Hooter on a Scooter don’t leave the seat back up facing the sun. I had shorts on!!!! Hooter is a lovely name for a wooden hut placed lovingly over a deep hole. I drove back to Palmetto and was relieved to find that the measurements passed to me were correct and that the truck fitted me, leg length, steering wheel height and sitting position. We had already packed for the trip so later that evening we loaded the truck ready for the start of our 3,000 mile journey the next day.

 

The Road to St. Louis via Trenton, Florida.

 

Sharing the driving and taking breaks whenever we felt the need, we set off on Sunday and drove 4 hours to Trenton Florida to the wonderful log cabin that Art and Nancy Coburn built and had lunch with visiting family. Chicken and corn on the cob and relish… 12 oz of fresh cranberries, one apple and one orange, all finely chopped. Believe me it’s delicious. Art is the polio survivor and also has many chemical and food allergies. He cannot tolerate ordinary water and has to have reverse osmosis water in the house, not eat some foods, rotate other foods and apart from taking Nancy to work and other short trips locally – avoiding tar laying etc – he has to spend most of his time at home. He has a large workshop where he makes wonderful wooden objects – like wooden goblets, banana hangers, removers for stuck toast in toasters (see page 25), items for the house and church, when energy permits.

 

Monday started with a turkey sausage, cranberry and strawberry pancake breakfast and then Art had arranged a surprise for us. Randy Disch arrived to give us both an hour long massage. Not having had one before I did not realise how much of me would be massaged! It was very relaxing although I explained to Randy that I would be fatigued afterwards as he was using my muscle energy. When I went to the loo (John, toilet) later I did not have the arm energy to push myself up and had to get onto the floor and crawl to the bath to get up. Much laughter at my expense which I did not mind as being with other polio survivors it really was funny at the time. It was another ‘scientific overdoing’ experience to add to my store of knowledge about me – oh and both Richard and I crashed out for a couple of hours afterwards. Randy later told Art that he learned a lot about PPS from us and was surprised at the fatigue we got from the massage but would be learning more and putting what he had learned into practice with other polio survivors.

 

Bob Vaughn, Art’s Chiropractor called after lunch and we chatted about PPS. I had not put my KAFO on after the massage and I was asked to stand and walk and then put my KAFO on to see the difference. He was very impressed and came and stood behind me examining various bits of my back. He told me that my right shoe build up that I had had done was 2 millimetres too much (it should be 10mm not 12mm). He was surprised that having told the Orthotic department in January after I got my KAFO that I had realised there was a difference, that I had had to have this done myself. He explained that the difference on the leg length doubles at the hips. This, dropped feet, unnatural gaits etc that are corrected can give us huge benefits to our health and he stressed the need for correct physical assessment to pick up all these points.

 

Art & Nancy took us for a drive to the ‘Way down upon the Suwannee River’ which is not far from their house – much wider than I expected and we saw many different types of boats go past including jet skis and water skiing. The rest of the time we spent chatting, eating and catching up on

 

email.

 

Stop-off at Warm Springs, Georgia.

 

Tuesday we drove to the Roosvelt Warm Springs Rehabilitation Institute in Warm Springs, Georgia. We booked in to a very nice room and then crashed out for a few hours. After a snack we went on a scooter ride round the extensive grounds and lake – I got eaten by mosquitoes – and we met with Dr. Gawne and chatted PPS.

 

Wednesday at breakfast I followed a man who had bacon, cheesy scrambled eggs, sausage, biscuit (savoury scone), pancake and syrup on one plate and then said ‘yes, cover it all with white gravy’ (white sauce made with pork bits)!!! We then went to Dr. Gawne’s office where she let me get my email on her computer and organised the day for us. We went and visited the Orthotics Department and saw how people are assessed and Orthosis made. They also took great interest in my Ambroise Orthosis and were soon peering into the mechanism to see how it worked, agreeing that it would help some of their clients. We then had lunch with Dr. Gawne in the restaurant, the same room where President Roosevelt held many dinners.

 

Myrna Whittiker and her husband from Stone Mountain Georgia arrived and we were taken on a tour round the grounds and church. It gave us a strange feeling seeing the pew in the church where President Roosevelt sat when he was there. The swimming pool is being renovated – something we would all have loved to have swum in. The four of us then went to the village of Warm Springs and had a drink watching the world go by – sitting outside of Country Cousins – owned by Phil Drummond, brother of Professor Mike Drummond from Macon GA, who is a polio survivor we correspond with a lot on the Internet. We were all given a lovely present of a teddybear – mine has twig angel wings – which will remind us of our visit. We chuckled when Phil told us that having met him we had seen the best looking of the two brothers.

 

We then returned to our rooms for a rest before Dr Gawne took us out for a drive over Pine Mountain in her open topped Volvo to a wonderful country style restaurant on the mountain with a breath-taking view. Being honest I could not fold myself up enough to get in the back seat of the Volvo but with the top open it was easy to step in and out. We had a lovely meal, chatting as ever about PPS.

 

Thursday after breakfast we went to Dr. Gawne’s PPS Clinic and with grateful thanks to her first polio patient, sat in on the assessment. Dr. Gawne uses Manual Muscle Testing putting on the 50lb pressure, repeats actions that she is told cause muscle weakness. She explained that it is not always possible in the time or examining room situation to test all the symptoms reported but explained that it is imperative that “doctors listen to what polio survivors say about repeating or sustaining muscle action causing weakness” and that the other disciplines take up these points assessing the actual doing of activities that cause weakness. She was surprised when we told her that most of our difficulties occur because we only get single action MMT and this is taken as a true record of our muscle ability. She has agreed to write an article for us on how an average patient goes through assessment at her clinic. We then had to leave and sharing the driving had lunch in Tennessee, as we drove across the thin bit of Kentucky had Dinner, and stopped for the night just into Illinois.

 

Stop-off at Mount Vernon, Illinois.

 

Friday morning we drove the few miles from Marion to Carbondale IL and rang Annette Hanna who was thrilled to hear I had arrived in the States safely and then happily stunned when asked if she would like to put the kettle on for a coffee. We got directions to her house in the woods and were soon having that real live hug that is the last bit of meeting via the Internet. First it’s emails, then a photograph, then a phone call and the voice, and lastly it’s meeting in person. We all talked non-stop about polio, PPS, and life in Carbondale in the 70’s, where all but me had been, flared trouser wearing hippie types – now that’s one photo I would have loved to have seen.

 

We then drove on to Mount Vernon IL. where Richard was born, and where Mike his oldest friend

 

had paid for us to stay at the Economy Inn. We unloaded the cases and went to visit Mike, his wife Vicki and son Chris. Illinois is called the land of Lincoln because Abraham Lincoln, the 16th president of the USA spent his youth and practised law there. Vicki works as a Class Assistant at the Lincoln School opposite her house and they would now like to start up regular contact with a school in Lincoln UK.

 

As with every part of the trip the first thing we did was nothing but chat to catch up on energy levels. The next day we had a tour round the town and visited Wal-Mart and Richard exchanged a gift voucher for two pairs of lightweight jeans.

 

The next day we were going to visit the country Graveyard where three generations of Richard’s family are buried but he said that first the truck must be washed! We had not gone a mile down the road when some teenagers standing by a church held up a sign saying “Car Wash here today”. We drove in and a bunch of kids raising money for their summer camp proceeded to wash the truck. What they lacked in skill they made up for in enthusiasm and were wet through but happy. We could not get out as there was nowhere to sit and it got very hot in the truck with the windows shut. Eventually I signalled that I had to open the window for a minute but the lad with the hose was unaware of this and I got wet too. We took a photo of them all, and hope that their summer camp was a great success and off we drove.

 

It was a beautiful sunny day and with Memorial Day only a few days ago nearly every grave was decorated with flowers and flags. Richard planted a flag by his dads grave – he died in 1951 when Richard was only 3 months old – and after some thoughiful moments he moved back a few feet and started to do a bit of a jig. Mystified I asked what he was doing, and he said “Dancing on my grave, it might be the only chance I get to practice.” We eventually stopped laughing and drove on to visit with Uncle Charlie.

 

Uncle Charlie ran an oil drilling rig in Ohio and retired to live on part of the land that used to be the Boone Homestead. He has 40 acres and lives in a wooded area of walnut, hickory and maple trees on top of the hill with a large pond 50 yards from the cabin. He keeps about 30 long horn cattle and a few chickens and has accumulated many old cars and trucks from which he sells bits and tinkers with engines.

 

The day after, Vicki and I went shopping and I succumbed and bought myself a denim shirt with embroidery on it, something I had looked at lovingly on the last two trips. Interestingly the majority of ladies clothes in the USA have embroidery, appliqué or beads on them. Malls and stores are spread out over more area and going round in my scooter meant I could have a good look round. It was really interesting going round food stores looking at the variety of different items and prices. Richard had gone off with Mike to a creek some 25 miles away where they could do some target shooting with a flintlock pistol and cowboy revolvers – chatting and reliving their childhood days.

 

Another day we visited the Mount Vernon historical village which consists mainly of original log buildings from the 1820’s to 50’s. A church, a working blacksmiths where local blacksmiths meet every month, a general store, a school with a photo of Richards Great Aunts Class in 1900, a doctors office, and a few log cabins. A jail from 1826 that was still used untill 1936!. There was also a new museum building full of items and photos from Mount Vernon’s past.

 

We had some great home cooked meals with Mike, Vicki and Chris each day and I was able to catch up on email using their computer. Chris is only 12 years old but whizzed about the computer like a veteran. One of his Internet friends lives in Grimsby in Lincolnshire – it surely is a small world once you get on the Internet.

 

St. Lousi, Missouri – The Conference.

 

Wednesday we drove to St. Louis Missouri, the shortest leg of the journey. Instructions to the hotel from the Internet said ‘over the Mississippi bridge, bear right, bear right, left left left…’ and it worked and there was the Marriott and we stopped, relieved that we had made it in one hit. We had

 

decided on valet parking as although a bit more expensive, with the extra help you get loading and unloading, it’s energy saving and money well spent. We were soon saying hi to polio survivors and arranging to meet up later for a meal in the restaurant. It really is strange talking like long lost friends to people you have only just met in real life. We started to get worried about Tony as he did not arrive as scheduled and a few hours later when he did arrive were dismayed to find that he had been re-reouted from New York via Detroit and his suitcases had not arrived with him.

 

After breakfast we registered for the Conference and soon were renewing acquaintances from previous conferences and meeting folks we knew by name from the Internet. Joan Headley of GINI and her staff continued to work almost non-stop to ensure that everything happened on time. At lunch it was such a pleasure to see two PPS Specialists, Dr. Jaquelin Perry and Dr. Augusta Alba being honoured for their many years of dedication to improving the lives of Polio Survivors. Retirement at 60 was not for them and although they have reduced their hours they continue to work at their PPS Clinics.

 

The three day GINI conference was split into Sessions and with six or seven lectures to choose from it was hard to decide which to attend, they were all so good. For example on Thursday there were 3 Sessions with 7 choices and I spoke at one session, leaving me two others to attend. I am contacting other speakers for permission to use information they provided in our future newsletters.

 

Much of our talk has been contained in earlier newsletters and information packs. It’s really been an ongoing process as I have learned.

 

Assessing ourselves and how we actually do actions and how that has changed from last year, five years ago, ten years ago, is important information that we can give to any health professional we see. Doing a visual time line of our Polio Lives most people said was an excellent idea. Visual information is much easier and faster to assimilate. Remember a couple of photos can say a lot too. When I go in on a scooter with KAFO and AFO to see a new health professional they would not expect me to show them a picture of myself as a Policewoman 18 years after my waist down paralysis. We explained muscle fatigue from Eddie Bollenbach’s article and many asked for copies of the slide printed in the last newsletter.

 

All agreed that holistic multi-disciplinary assessment was necessary to show our problems, and that exchanging ideas of how we had overcome problems could help many others. We will publish a list of these in the next newsletter – so here is your chance to write and give us your ideas to add to them.

 

We used small sketches to show that when visiting a doctor, taking a list of symptoms as long as a toilet roll and inches of medical articles off the Internet causes the Doctor to flinch in horror – trying to remember back to that 15 minute lecture about polio and thinking ‘this patient might know more than I do’. HELP. Another sketch showed that asking us ‘Can you?’ does not encourage a polio survivor to tell it like it really is, our pride in our abilities will not let us. We ask Health Professionals to rephrase questions to ‘How do you X?’ instead of ‘Can you do X?’. Ask ten Polio Survivors ‘Can you get upstairs?’ and you are likely to get ten ‘Yes’ answers. Ask ‘How do you get Upstairs?’ and get ten different replies from ‘walking up normally’ (waist up polio survivor) through ‘one step at a time and pulling myself up with my arms’ to ‘going up backwards on my bottom’.

 

The reply Richard gave to ‘How do you fix yourself a meal?’ instead of his ‘yes’ to ‘can you’, caused much amusement and agreement. He replied “I eat ‘ding’ food now mostly. I buy processed meals and put then in the microwave and wait for the ‘ding'”.

 

As I and other members have been experiencing increasing problems with my upper body – I had waist down paralysis – I chose a lecture by Mary Ellen Brown RPT, a polio survivor herself, and Nancy L. Caverly OTR/L , “Strategies for Management of Arms and Shoulders”. The first surprise was the diagram showing which muscles are used to move the arms and shoulder joints. Not only muscles in our arms but they stretch right across the front and back of our chests to our waists.

 

Précising their talk – we will be asking permission to include a complete article next newsletter – the advice was that we must sit and stand as straight as possible and keep our arms in good alignment to accomplish activities. Learn relaxation and breathing techniques to lessen tension and muscle stress. Make the actual doing of activities as easy as possible using any aid or assistive device that is available. Get advice on which aids are best for your particular problems. Using an incorrect aid can make matters worse. When we take breaks ensure our arms are resting too, not holding a book. Delegate tasks that are too demanding. Remember that Repetative Strain Injury occurs in 62% of the normal population when using computers, so if we are having problems with our upper extremities it is imperative that we have an ergonomic assessment to ensure our workstation is set up correctly. They finished with this reminder.

 

[A Reminder – If you develop any pain, weakness, excessive fatigue in the upper extremities, and reasonable amounts of rest do not decrease the symptoms, get a medical evaluation and begin treatment as soon as possible. Many upper extremity problems can be eliminated with proper management, and the sooner the symptoms are addressed, the less risk you face of permanent decrease of upper extremity function. If you doctor does not suggest treatment such as physical therapy and occupational therapy, INSIST ON IT. ‘Normal’ people rarely hesitate to seek medical assistance when pain or weakness occurs in their arms and shoulders. Neither should you, who has much more to lose – your independence.]

 

To any medical professional reading this and who is using one-off Manual Muscle Testing that can grossly overgrade our actual muscle ability as an assessment, can I please ask that you now take note of the symptoms being reported to you, and ensure that the polio survivor is actually watched doing tasks that they say they are having problems with. It is 12 years since a fall and the start of weakness in my left arm and it has taken me nearly that long to convince anyone that the functional decline I am reporting is true.

 

I have included in this newsletter an article by Susan Calmes MD from UCLA (page 3) regarding anesthetics. Very important that you should make any health professional you are seeing that assesses or treats you with a local or general anesthetic, aware of the implications of using that on a Polio Survivor. An example being the assessment of my throat two weeks ago with camera – I was not told it was a local anasthetic and the temporary paralysis I experienced was exactly how it feels when I go to swallow and nothing happens.

 

We met up one lunchtime with representatives from Sweden, Panama, Switzerland and Israel and are remaining in contact. More on the GINI Conference at the AGM and next newsletter.

 

Bruno Mobility Europe let me down by telling me that my charger would work in the USA with just a plug socket change from British to American. The hotel loaned me a US to European Transformer that only partly worked and I had terrible problems keeping my scooter even 50% charged which made life very difficult. My advice is to check with more than one source if you are going to travel abroad with any electrical equipment.

 

With my scooter power draining to almost nil and a 5 hour journey ahead of us we made the difficult decision to leave the Conference a couple of hours early after the excellent ADA speech by Polio Survivor Lawyer Robert J Provan from Austin Texas. Without a working scooter I am restricted to walking just a few yards with an increase in energy use.

 

2nd Branson Internet Reunion.

 

Again sharing the driving we arrived at the city limits of Branson just as it was getting dark. Emails full of directions and hotel town plan maps are great in the daylight, but what we had not realised was that the alternative route to the south of Branson went right out into the country. I thought we must be going wrong and we headed back towards the lights and asked for directions. Turn left and left again at the lights and it’s on the right. It was, but five miles further down the road. We pulled in

 

and parked up and Millie Malone and Jerry Glass happened to be in Reception to say ‘hi’. Richard headed straight for the room, luckily only two doors from reception and crashed out. My scooter had died totally on the way to the room so I borrowed Richards to get to the meeting room. I soon had a long cold drink in my hand and it was so lovely to have real live hugs with folks you have been talking to for months. Tired as I was this was good medicine but I soon decided that sleep was needed to cope with tomorrows events.

 

Sixty-nine folks attended the 2nd Branson Internet Reunion organised by Tommy Conrad. Carol Ann from Canada, Tony and myself from the UK, and the other 66 came from 22 different States. That’s double the number who met last year and Tommy has booked the same weekend for June 2001 when they hope to double the numbers again. Sorry that I can’t mention all who attended. Next day after a good breakfast and more chatting and hugs we set off in convoy to the Duck Rides. The sight of Kathy Greulich holding up the traffic so that about ten cars could get out one behind the other, and then running back to the first car, was something I shall never forget. I was doing the same thing fifteen years earlier, except my running was a cross between a galumph and a walk. The Duck rides are old wartime D.U.K.W.’s and 36 of us piled aboard with Captain Jerry. We were

 

handed yellow plastic duck bills that quacked if we had enough ooomph to blow them. Most of the time we were trying to laugh at the same time. Off we set through Branson ‘duck quacking’ at every other DUKW that passed. A great guided tour past our hotel and out across the Dam and then up the mountain on a single track path. The company own the mountain and have purchased old wartime vehicles and they are parked at intervals and we were told their history. We arrived at the top and what a view across the lakes. We went back down the mountain and onto the slip road to the lake where Captain Jerry stopped and asked, “Do you want to go in slowly or commando style?” We all shouted “commando style” and he threw a towel towards the back and said you folks on the back seat might need this and off we set. Well we hit the water and there was a huge wave that came down the sides and over the back seat. I turned to look at Richard and he had water dripping off his nose, glasses and chin as did some others sitting on the sides, but those on the back seat got wet butts! We had not driven far when he offered the wheel to anyone who would like a go, and Dale Ryals took the opportunity to drive us about. We saw the Branson Belle Paddle Steamer and spent about a half hour on the lake. Capt. Jerry took over again and we went back up the slip road and back to the starting point with songs, jokes and stories of the past all the way. Available energy used up so it was back to the hotel and rest and chat. Quite a bit of time was spent talking with Stella Cade and Phyllis Hartke from California who run the San Francisco Bay Area PPS Group as to how support group leaders can get together more. Ideas floated are being discussed – more news next newsletter.

 

The next day we did a TV Interview at the hotel, to promote the awareness of PPS locally, which was shown on local tv that night. They aired one sentence of my answers, a couple of Millies and pictures of most of us on our respective wheels. Strangely at the same time on another channel was a repeat of A Paralysing Fear – the story of Polio in America. We then set off to visit Silver Dollar City. Without scooters we would not have seen anything at all, and a couple of our party hired them for the first time. Very commercialised with food, trinket, clothing, outlets everywhere. Rides for children and lots of water fun areas. Tommy arranged for us to go to the little church for 1pm to have a sing along with Barbara Fairchild. She had visited the hotel last year to sing for the first reunion. She welcomed us in to the front and we manoeuvred scooters and chairs in like a jigsaw and sang a few country style hymns.

 

Richard and I went on the train ride – which was stopped by a couple of rednecked farming brothers who sent the train guard off to look for baldknobbers (hillbilly bad men) who might hijack the train, and proceeded to do this themselves as soon as he was out of sight. They do this every 30 minutes!!! We left early afternoon and went back to the hotel for a long rest. We did our talk again in the evening and spent quite a bit of time discussing the ways we have changed how we do things and the novel ideas we have come up with. It’s so interesting and time and time again you find

 

things that you can try.

 

All too soon it was Wednesday and time to leave Branson and new and old friends. The sky was dark with rain clouds as I was loading the truck in the car park. Suddenly the heavens opened like a bath plug being removed. I took four paces back towards the hotel – the porter who had gone back for the rest of our luggage yelled for me to bring the truck over to the portico – and I did 8 paces back and got into the truck. I drove over and waited till those ahead of me had loaded and took my place under cover. I got out, totally soaked even down to the insides of my trainers, and all in 12 paces! I looked like a drowned rat much to the amusement of many.

 

Details of the 3rd Branson Internet Reunion in June 2001 can be found in our World-Wide Conference, Seminar and Reunion Diary, Event Card #0023.

 

Back to Florida with First Stop-over at Starkville, Mississippi.

 

We were soon loaded and as we were told the rain was likely to be set in for hours, we set off towards Arkansas. With wipers going triple speed and taking it steady we were on our way. The rain eased to normal with bouts of deluge now and then but thankfully after a couple of hours we found sunshine again.

 

We were heading for Starkville, Mississippi. Kenneth Rhea had contacted us in Branson and offered us a bed for the night as he could see he was not too far off our probable route to Mobile Alabama. We gladly took up his offer and arrived early evening having stopped a few times for a rest. We enjoyed a delicious meal and chatted about PPS in his area. Kenneth has had one arm that has not worked well for most of his polio life and it was interesting watching and discussing how he accomplished tasks often totally one handed. He also wears a leg caliper. Next morning we had a lovely lazy breakfast swapping more information and then were on our way again.

 

Stop-over at Mobile, Alabama to give ‘talk’.

 

We arrived in Mobile Alabama with the first rain they had had in months. Charles Gollott, a USA member of the LincsPPN, lives there and had asked us to visit their PPS group. We were taken to meet our hosts John and Betty Driscoll, a lovely couple who looked after us so well. Their bungalow full of cross-stitch and other family treasures including a framed message from the Pope for their 50th Wedding Anniversary. Sylvia Bern took us out for lunch the next day and later Patsy Adams joined us and they took us for a ride round part of Mobile and then to the Easter Seals offices where we had a tour of the facilities. That night Charles and Barbara Gollott and son Britton took us out for a Mexican meal.

 

Saturday Patsy Adams and Margaret Brown – an English friend who has lived in the states for years – picked us up again and took us out to lunch and then for a drive round the old area of Mobile where many post civil war era houses are being renovated. The roads were lined with long-limbed branch oak trees hanging with Spanish moss touching in the centre. Some of the houses are called ‘shotgun’ houses as they have a front door, long hallway and back door, so you could open both doors and shoot right through.

 

We saw an old 18th Century fort, Fort Conde where the British got their butts whipped in the Revolution. (Richard dictated that bit – and I added it as it reminded me of 1998 when Dr. Henry asked Lynn and I on the morning of the 4th July if we were sure we wanted to go to the celebrations… “Of course” we replied. His reply, “Well, we did beat you” made us hoot with laughter).

 

We then went to the newer part of Mobile and saw the most hideous new building – it’s ok to tell you that as the locals think the same – it’s the City Hall. (For those of you who know Lincoln it’s a bit like Debenhams – architecture totally out of place). We then went to the USS Alabama Memorial Park. Richard was thrilled to see his first World War II Battleship and grateful for the free ‘yes you can go onboard’. There was a long slope up to the ship but we managed it and about a quarter of the main deck. Richard had his photo taken by guns he knows his father trained on during the war. He

 

managed to look up under a large gun turret looking a bit like a giraffe drinking water, long limbs, callipers and stick, out at angles. His father was a member of a gun crew on Liberty Ships during the war so it was important to him to see some of the past associated with his father.

 

That evening our hosts held a ‘cook out’ attended by many members of their PPS group where of course we discussed polio and the differences in assessments, not only in each Country but also depending on which GP you start with. We told them about the Conference and went through our talk. Their nearest PPS Doctor is in Georgia, Dr. Peach who we had spoken to at GINI and who will be sending us more articles for our Library.

 

We left next morning for Florida but due to energy levels waning and the thought of Nancy’s cooking we accepted Art and Nancy’s offer to visit again and break the journey. We were able to tell them all about the trip and pass on things from PPS’ers in Branson for them. We left next morning after another lovely breakfast, this time blackberry and strawberry pancakes and turkey sausage, and of course Cranberry relish. Nancy had made a special tub for me.

 

Arrive Florida for Rest and Recuperation.

 

We arrived back in Florida on Monday, unloaded the truck and slept. The next two days were spent catching up on email and doing the washing. It was very hot, about 92 and with high humidity. Being outside during the main part of the day was exhausting. Thanks to a friend, Richard suddenly found himself with the offer of the cost of an airline ticket to the UK and made the decision to come back with me till after the AGM and looks forward to meeting those of you who can attend.

 

Thursday we went for a drive out to Sarasota, St. Armands Key and Lido Beach. White sand, blue sky, emerald sea, palm trees and a pelican or two. Bliss. We then drove back along Longboat Key to Anna Marie Island. We both agreed that it was hard seeing all the folks enjoying swimming and boating which we used to do. Now with PPS, looking was all we had energy for and sand in caliper joints was not something we wanted. It would take some planning to work out where and how we could swim in the sea again.

 

Another day we drove out to Myakka State Park so that I could an alligator in the wild. We stopped near a bridge across a small lake. There underneath was my real live alligator about five foot in length and further away, two more smaller ones. Beady eyes watching your every move. We drove on past the lake – not enough water for the airboats to go out, but I saw some wonderful birds, far larger than I expected. Blue and Great Herons, Roseate Spoonbills, Anhingas, Cormorants and many other wading birds.

 

We went to visit with Gabe and Billie in Myakka who have a two story house with a cathedral ceiling which they built themselves. Its full of items that reflect their interest in the civil war era. Gabe does cowboy, indian, civil war and mountain man re-enactments and has outfits for all of this. They also have three horses, two dogs and four cats.

 

Richard held a cook out for a few friends who all love target shooting with a variety of different weapons. Muzzle and breech loaders both antique and modern. Bill and Sandy worked at the same jewellery company as Richard and have been friends for 17 years. They brought over photos of the snakes that they breed – Richard has just commented that the snakes breed themselves! King Snakes. Both Bill and Sandy have flintlock muzzle loading rifles that Richard made. Bud who is a retired professor and was a sailor in WWII also visited. Richard had camped next to him at a Buckskin re-enactment two years ago.

 

Monday 26th June was the most awful day of weather in that part of Florida, angry dark skies, thunder and lightening, torrential rain. We packed and drove to the airport to find that the flight had been delayed five hours. After a free meal on BA and an eight and a half hour flight we arrived at Gatwick Airport to be met by Tony Meladio with my car. He drove us back to his house in Kingston where we had a quick drink and we arrived back in Lincoln at 7p.m. on Tuesday, travelling for 25 hours. Needless to say the first few days back in Lincoln were doing almost nothing.

 

Post-Polio Population Statistics – A Review.

 

Chris Salter

 

Vice-Chairman, Lincolnshire Post-Polio Network. A Lincolnshire Post-Polio Library Publication. July 2000

 

The starting point of this review is an extract from a recent book by Dr. Lauro. S. Halstead, one of the leading specialists in Post-Polio conditions. In “Managing Post- Polio”[1] he writes:

 

“Accurate numbers of Americans who had paralytic poliomyelitis are not available and probably never will be. There is no national registry of persons who had polio. Also, there is no way, after all these years, to compile accurate figures from state and local health departments. The best estimate is based on data from the government’s National Center for Health Statistics, which conducts a National Health Interview Survey each year. This survey collects data from a random sample of the U. S. population regarding various health and disability issues. In 1987, surveyors specifically asked questions about the number of persons who were given a diagnosis of poliomyelitis with or without paralysis. Based on the results of this survey, the Center calculated slightly more than 1.63 million polio survivors. Of these, 641,000 (39.2 percent) persons had paralytic polio; 833,000 (51 per-cent) had non-paralytic polio; and 160,000 (9.8 percent) didn’t know. Unfortunately, some of these data have been miscopied or misrepresented and then erroneously published in the medical literature as fact. The most common error is the statement citing 1.63 million persons with paralytic polio when the correct estimate is really 641,000 as cited above.

 

The latter figure, however, is based on a survey conducted 10 years ago. Since then, it has been estimated that 5 percent to 10 percent of the polio population has died, which means the current number of survivors is closer to 600,000. How many of these 600,000 persons with paralytic polio have PPS is unknown. Several studies indicate a large number, perhaps 60 percent or more, is experiencing one or more new difficulties related to old polio, such as muscle aches and joint pains. However, the number with PPS (new weakness with or without other symptoms many years after acute polio) is undoubtedly smaller, probably in the range of 20 percent to 40 percent. Using these figures, it is estimated that approximately 120,000 persons to 240,000 persons in this country are currently experiencing symptoms of PPS.”[1]

 

Although the above was written as recently as 1998, it has been in part superseded regarding one significant criteria. Dr. Halstead’s final PPS estimate excludes persons with a history of nonparalytic polio. For several decades there has been a tendency to require a history of paralytic polio before any diagnosis of PPS will be considered. Such a pre-requisite is not supported by medical papers written in the 1950’s and earlier. Those papers report evidence of a level of neuronal damage by the polio virus that does not present any clinical signs of paralysis at the time of infection. Indeed, there can be a significant level of damage without any clinical indications. The Lincolnshire Post-Polio Network commissioned an article [2] early in 1999 to present the case for not excluding non-paralytic polio as a pre-requisite for PPS. The authors, Marcia Falconer and Eddie Bollenbach, have recently been successful in getting a commentary on the subject [3] published in the peerreviewed American Journal of Physical Medicine & Rehabilitation and Dr. Halstead has also written on the subject in the same journal.[4] In that article Dr. Halstead writes

 

“Although the diagnosis of postpolio syndrome traditionally has required a remote history of paralytic polio, many persons such as the ones described here with typical

 

symptoms of postpolio syndrome have no clear history of paralytic disease and are being misdiagnosed. With this in mind, we believe that the diagnostic criteria for postpolio syndrome should be modified to include the following: a history of remote paralytic polio or findings on history, physical examination results, and laboratory studies compatible with poliovirus damage of the central nervous system earlier in life.”[4]

 

This inevitably leads to the conclusion that an indeterminate percentage of the 833,000 persons with non-paralytic polio in the US calculation will eventually present PPS symptoms. The worst case scenario would be that all 833,000 suffered viral damage just below the clinical level.

 

I will now move on to the UK and specifically Lincolnshire. There are no records available of numbers of cases of prior polio being currently treated in Lincolnshire for new symptoms. A 1996 letter to the Lincolnshire Post-Polio Network from Dr. Le Geyt, Lincolnshire Health Authority, gave three separate figures for current numbers of cases of prior paralytic polio in Lincolnshire, each sourced or derived from a specific report. I have extrapolated UK figures from his figures and other sources using a Lincolnshire population of 631,466 and a UK population of 57,400,000 from 1990 National Health Service Statistics. In the case of Dr. Le Geyt’s Lincolnshire estimates which are themselves extrapolations from UK figures, any difference between the original UK figure and my UK extrapolation from his Lincolnshire estimate is probably due to our using a different Lincolnshire/UK population ratio. My UK extrapolations are only intended to emphasise the significant variation found in estimated cases of prior polio.

 

The first figure he gave was 100. The source for this figure he quotes as a 1998 paper in the Lancet[5] 23,000 infections 1920 to 1950. The UK extrapolation is 8,610. (In comparison, another UK statistic, source unknown, puts UK notified polio cases from 1912 to 1961 as 74,280). The second figure he gave was 300. The source for this figure he quotes as the British Polio Fellowship saying of 100,000 infections, 30,000 survive. The UK extrapolation is 26,404. The third and last figure he gave was 1,200. The source for this figure he quotes as a paper by Ahlstrom [6] of a Swedish survey from which a figure of 186 per 100,000 population is derived. The UK extrapolation is 106,764. From a recent Edinburgh University survey of Lothian[7] a figure of 200 per 100,000 population is derived, i.e. 114,800 out of a Lothian population of 750,000. Using national population statistics again, the Lincolnshire extrapolation is 1,262 and the UK extrapolation 114,800. The Lothian survey also refers to a Norwegian survey by Gilhus[8] in 1998 which derives a figure of 250 per 100,000 population. The Lincolnshire extrapolation is 1,577 and the UK extrapolation is 143,500.

 

Returning to Dr. Halstead’s US census based estimate of 270 per 100,000 population our Lincolnshire extrapolation is 1,703 and our UK extrapolation is 154,980.

 

It is important to re-emphasise that Dr. Le Geyt’s figures and therefore our extrapolations are limited to cases with a history of prior paralytic polio. Include non-paralytic polio and the US estimate increases to 680 per 100,000 population. All the Lincolnshire and UK extrapolations are similarly affected, i.e. increased by a factor of 2.5.

 

As can be seen, when trying to determine the number cases of PPS in a population we are confronted with a number of problems.

 

1. No current statistics of persons currently diagnosed as PPS.

 

2. Estimates of the percentage of cases of prior polio likely to develop PPS vary considerably.

 

Few if any take into account that a historical clinical diagnosis of non-paralytic polio does

 

not preclude a diagnosis of PPS.

 

3. Although in recent years records of notified and confirmed cases of polio have been

 

maintained by the World Health Organization, records predating the eradication campaign are more difficult to locate and may be unreliable.

 

4. Estimates of the numbers of cases of prior polio vary considerably and as with PPS estimates, tend to be limited to so called paralytic polio. It is worth noting that a ‘mild’ polio infection may not even be diagnosed at the time of the infection but may still result in sufficient damage to cause problems in later life.

 

While the above observations arise from data specific to the USA, UK, Sweden and Norway there is no reason not to believe that they do not apply to all countries. As far as I am aware no individual, organisation or institution has attempted to gather statistics on a world-wide basis in order to arrive at a reasonably accurate estimate of the number of polio survivors (by definition living) in the world today let alone the number presenting or likely to present PPS symptoms. It also worth emphasising that while the polio survivor population in the polio free regions is by definition reducing in numbers over time, until the WHO eradication campaign achieves its goal, there are regions where cases of polio still occur.

 

ACKNOWLEDGEMENT

 

This review is an expansion and continuation of an analysis by Hilary Hallam referenced in Polio Survivors Need Holistic Multi-Disciplinary Assessment Because The Standard Physical Assessment Is Not Adequate, LincPIN Newsletter Volume 2 – Issue No. 5 – June 1999.

 

REFERENCES.

 

1. Managing Post-Polio A Guide to Living Well with Post-Polio Syndrome edited by Lauro S.

 

Halstead Published by NRH Press 1998 pp11-12. [Lincolnshire Library Booklist]

 

2. Non-Paralytic Polio and PPS Marcia Falconer, Ph.D. cell biology and Eddie Bollenbach,

 

M.A. biology Lincolnshire Post-Polio Library Publication, January 1999. [Lincolnshire Library Full Text]

 

3. Late functional loss in nonparalytic polio. Falconer M, Bollenbach E. BioSoma

 

Technologies Incorporated, Nepean, Ontario, Canada. Am J Phys Med Rehabil 2000 JanFeb;79(1):19-23. [PubMed Abstract]

 

4. Nonparalytic polio and postpolio syndrome. Halstead LS, Silver JK. National Rehabilitation

 

Hospital, Washington, DC 20010, USA. Am J Phys Med Rehabil 2000 Jan-Feb;79(1):13-8.

 

[PubMed Abstract]

 

5. Motoneuron disease and past poliomyelitis in England and Wales. Martyn CN, Barker DJ,

 

Osmond C. MRC Environmental Epidemiology Unit, University of Southampton,

 

Southampton General Hospital. Lancet 1988 Jun 11;1(8598):1319-22. [PubMed Abstract]

 

6. Epidemiology of neuromuscular diseases, including the postpolio sequelae, in a Swedish

 

county. Ahlstrom G, Gunnarsson LG, Leissner P, Sjoden PO. Orebro College for the Health

 

Professions, Sweden. Neuroepidemiology 1993;12(5):262-9. [PubMed Abstract]

 

7. Survey of the Late Effects of Polio in Lothian B. Pentland, D. J. Hellawell, J. Benjamin, R.

 

Prasad. Rehabilitation Studies Unit, Charles Bell Pavilion, Astley Ainslie Hospital, 33

 

Grange Loan Edinburgh EH9 2HL January 1999. [Lincolnshire Library Full Text]

 

8. Post polio: a challenge for neurological rehabilitation. Gilhus N. WFNR Update Nov 1998,

 

6-7.

 

Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available.

 

Eyelid trouble.

 

Mary Ellen Hemby in Marshall, Texas.

 

<mhemby@OURPLACE.COM>

 

A member of our local support group has been having eye trouble — tired, vision loss, watering, etc. After treatment for supposed allergies and eye problems, she asked the Texas Polio Survivors in Houston and learned that another polio survivor had similar trouble. With the information from him, she has now had successful eyelid surgery and her vision problems are cured! The eye surgeons agreed that Polio had affected the 7th cranial nerve, thereby causing the drooping eyelids and loss of peripheral vision. She had only local anesthetic and is doing remarkably well. Medicare paid for this usual cosmetic surgery because it was PPS related!

 

So, do consider PPS when having eyelid trouble. The surgery was done by an eye surgeon in Tyler, TX. (It is usually a cosmetic procedure done by a plastic surgeon for eye lifts. It helps make you look younger!)

 

Dr. Jacquelin Perry’s comment on Hip replacement surgery.

 

Mary Clarke Atwood, Ranchos Los Amigos PPS Support Group, California, sends this reply in answer to a members query.

 

Question: What are your thoughts on hip or knee replacement surgery?

 

Answer: For an arthritic hip, total joint replacement is just fine if you have the muscles to control it. A polio survivor needs to have about grade 3+ hip muscles for this surgery to be successful. Otherwise the hip will dislocate. The knee is simpler to handle because it can be put in a brace since it is a tubular structure. But there is no brace for a hip.

 

Originally published in “ASK DR. PERRY: December 1997”, Rancho Los Amigos Post-Polio Support Group Newsletter, also reproduced at Post-Polio Syndrome Central http://www.skally.net/ppsc/ask.html.

 

Collective Ability – Information Leaflets.

 

Nottingham based nutrition and preventive health advisors, Collective Ability, have produced free information leaflets on managing a variety of health problems. These include:

 

Managing Chronic Odema.

 

Managing Achy Arthritic Joints.

 

Managing Eczema.

 

Antioxidants and free radicals – what are they?

 

These have all been written from a basis of the personal experience of one of the founders of Collective Ability – a Lincolnshire Post Polio Network member, Marguerite McElroy, and give practical advice and information which can make a real difference to all these conditions. To receive a free copy of one or more of these leaflets contact

 

Dr. Paul McElroy,

 

Collective Ability.

 

194 Cator Lane, Chilwell, Nottingham, NG9 4BE.

 

Tel:- 0800 0 133 113.

 

Email:- collectiveability@ic24.net

 

Dr. Henry writes about “Henry’s Helpful Hints for Living with

 

Post-Polio Syndrome”

 

When I was three years old, my mother became a victim of Schizophrenia. She never recovered. When I was eleven years old, I had paralytic polio. I partially recovered. These two life events were major factors in guiding my life toward a career as a physician and a psychiatrist. For at least the last decade, I have struggled with Post-Polio Syndrome (PPS). Most of you are quite familiar with all of the manifestations of that struggle. For almost six years, I have had the privilege of being the president of the Central Virginia Post-Polio Support Group, a marvelous group. As a result, I have had the pleasure and challenge to communicate with hundreds of PPSers around the world. I think I have learned a lot about PPS and the people who are living with this life changing disorder. In this article, I will attempt to share what I am calling Helpful Hints for Living with Post-Polio Syndrome. Many of these hints are similar to what is now called “mind – body” medicine. Many of them are replicated in other lists and articles. I offer these hints for your review, reflection, and response. This list represents only my opinion and is not to be interpreted as anything more than that.

 

1. Sleep: Adequate, restful sleep is a major asset in living with PPS. Successfully living with

 

PPS usually requires more sleep than before the onset of PPS. The amount of sleep may

 

range from 8 to 12 hours. This may be all nighttime sleep or could be a combination of

 

nighttime sleep plus an afternoon nap. Many symptoms of PPS can interrupt the attainment

 

of this level of sleep. Problems with pain, hypoventilation due to weakened respiratory

 

muscles, sleep apnea, anxiety, panic attacks, and depression are common sleep disturbers.

 

Any of these disturbers need to be evaluated and treated before sleep hygiene can be

 

improved.

 

2. Pain: Pain and PPS are like partners of misery. Every effort should be made to eliminate or

 

reduce pain without resorting to narcotic analgesics. A variety of pain management

 

approaches may be tried. This might include over the counter preparations such as Tylenol,

 

Ibuprofen, aspirin, and other non-steroidal anti-inflammatory medications. Non habit

 

forming prescription medications may help pain and sleep problems. Low doses of the

 

tricyclic antidepressants and/or the selective serotonin reuptake inhibitors may help to

 

reduce the daily pain level and improve sleep. If one has made a genuine effort at managing

 

pain by reduced activity, more rest, and the use of assistive devices, then the use of narcotic

 

analgesics would be more appropriate. Other pain management approaches might include

 

moist heat as obtained in a heated pool, gentle massage, magnet applications, and even

 

acupuncture. Heated pools should not exceed 92 degrees F. Massage should not be

 

aggressive, and a trained professional should administer acupuncture.

 

3. Fatigue: Fatigue is probably the single most commonly shared symptom of PPS. Fatigue

 

contributes to greater pain and sleep disturbance. I believe that intermittent down time is the

 

most effective method of managing fatigue. Down time means lying down prone or supine.

 

Each person has to discover what is the best balance between down time and up time for

 

each day. For example, spending an hour reclined every four hours works well for many

 

PPSers. Medications to reduce fatigue have proven to be of minimal effectiveness in double

 

blind studies. Also many PPSers do not tolerate medications well and have numerous side

 

effects.

 

4. Respect new weakness. If new weakness is detected or experienced, respect this reality and

 

do not try to restore strength by an exercise program. Exercising with this goal in mind will

 

likely lead to more pain and a progression of the weakness. Most of us get enough exercise

 

just trying to maintain the activities of daily living and trying to remain independent. Be sure

 

that any physician or physical therapist who recommends exercise is fully knowledgeable

 

about PPS.

 

5. Blood pressure: Maintaining normal blood pressure is most important for PPSers. Many of

 

us experience elevated systolic blood pressure (the upper number on a blood pressure

 

reading) after exerting some physical effort. Our heart rates may also increase during times of fatigue and minimal physical effort. If this elevation of blood pressure persists, the risk for heart attack, heart failure, and stroke increase. There are many effective medications to control blood pressure. However, beta-blockers sometimes cause side effects for PPSers. The systolic pressure should be below 140 at rest and our pulse rate should be below 100 at rest.

 

6. Brain power: Utilize your brain or intellect to compensate for the increased physical limitations of PPS. This is a process that most polio survivors have been doing for years. PPS calls for an enhancement of this same process. Read more. Read some of the classics. Audio books are a wonderful way to read without tiring your brain or eyes. If your physical disability makes it difficult to hold a book or maintain a reading posture, you are eligible for the Federally funded audio (talking) books for the blind and handicapped. A simple application has to be completed by your doctor to authorize this service. I would also recommend the many benefits of owning a computer. For PPSers, the investment required to purchase a computer is usually a rewarding undertaking. You are never too old to enjoy and learn from a computer, which literally makes the world available to you.

 

7. Doctors and therapists: Find doctors and other therapists who not only know about PPS, but are interested in learning more and will listen to you. However, be cautious if a doctor tends to blame all your symptoms on PPS because we are in an age group, which is vulnerable, to many other medical/surgical problems. Your doctor should rule out other causes of symptoms that simulate PPS symptoms. Your doctor should not hesitate to refer you to an appropriate specialist if any symptoms are not explained.

 

8. Herbal medicine: Americans now live an average of about thirty years longer than our ancestors of one hundred years ago. This is largely due to antibiotics, better diagnostic and treatment techniques, improved nutrition and more prevention via vaccines. Because we have it so good, we want it even better. Thus, the herbal, vitamin, and nutrient alternative medicine business is booming. Keep in mind that the Federal Drug Administration does not have the resources to monitor these alternative products as it does prescription medications. Whether it be St. John’s Wort, Ginkgo Biloba, L-carnitine, Feverfew, the various vitamins, or shark liver oil, be sure that your physician knows what you are taking and remember that with many of these products, cheaper does not always mean purity of the product. If an alternative medicine seems to be helping you, continue it. Nobody has found a consistently effective pharmaceutical treatment for PPS.

 

9. Talk to someone: Talk to someone who cares about your feelings in living with PPS. This person might be your spouse, a family member, friend, or even a professional therapist. Our support group is a healthy and welcome forum for talking about your feelings. Many polio survivors have spent a lifetime of containing their feelings of loss and even anger. To express these feelings to someone is very difficult, but the benefit is immense.

 

10.Spiritual base: Having a faith or spiritual base that transcends the daily activities and struggles of this life can be an additional source of personal and inward strength. This pilgrimage is a personal choice, but I believe provides a greater meaning to our time in the midst of the ages.

 

11.Nutrition: Enjoying good food is still one of the pleasures of life that most of us still can do. That is the up side. The down side is that we more easily gain weight, as we are more sedentary living with PPS. The practical advice is to avoid big meals, especially at the end of the day. Eat balanced meals with some emphasis on protein content. Maintain good hydration. Good hydration assists renal and pulmonary function.

 

12.Keep your feet up: When sitting, keep your feet elevated whenever possible. Another advantage of taking intermittent down time throughout the day is the benefit of preventing or

 

at least reducing dependent edema. Weakened leg muscles, along with reduced motor activity, contributes to dependent edema. Chronic dependent edema can lead to possible leg ulcers, deep vein clots, and phlebitis. Complications of these conditions can result in life threatening pulmonary emboli. Wearing support hose can also help prevent dependent edema.

 

13.Don’t ignore headaches: Headaches are a common sign of PPS fatigue. Have your doctor rule out other causes of headache such as hypertension, tension vascular headache, or some other medical problem. A dull daily headache is often a sign of PPS fatigue and particularly brain fatigue. Brain fatigue is often marked by word finding difficulties, mental focusing, and concentration problems. These brain fatigue symptoms are usually reversible with rest. Rest and more rest is the best treatment for the dull headache of fatigue.

 

14.Pace: Approach pacing like you would an algebraic equation. The daily physiological energy expended must equal the physiological energy stored and not exceed it. Most of us are accustomed to expending more energy than we store or acquire. If you know that a particular day’s activity will result in more energy expended, plan to spend more than one day to restore and recover that energy. Balancing this energy equation over time results in successful pacing. Pacing reaps results, but not in a few days. One should practice pacing for months and years.

 

15.Breathe well: Healthy breathing and good sleep hygiene are coupled together as I mentioned in #1. Sometimes, the muscles of breathing grow weaker with the progression of PPS. Thus, there could be an insidious onset of chronic hypoventilation, which could contribute to an overall feeling of fatigue. Also scoliosis, resulting from polio may advance with the progression of PPS and aging. This process could restrict the ventilatory capacity of the lungs and lead to hypoventilation. Measurements of pulmonary function and arterial blood gases can help to diagnose hypoventilation. Most PPSers with these problems do not usually need added oxygen, but simply improved ventilation, often only at night. Depending on the degree of hypoventilation, this condition can often be treated with a C-pap, bipap, or ventilator without the necessity of added oxygen. Actually, adding oxygen without improving ventilation can increase the risk of carbon dioxide retention in many PPSers with scoliosis or weakened respiratory muscles. Untreated chronic hypoventilation can lead to respiratory failure and ultimately death.

 

16.Extend recovery from any stress: Expect to take three to four times longer to recover from an infection, minor or major surgery, an injury, accident, or emotional upheaval. For whatever the reason, the physiological restorative processes of the body and brain are delayed by PPS. When any of these stresses occur, plan on taking longer to recover.

 

17.Use your sense of humor: Many survivors of polio seem to possess a witty sense of humor and an upbeat approach to life. A sense of humor is a good way to remain innovative, creative, and positive. Keep using this attribute.

 

18.Sex and Intimacy: Sexual stimulation is good for the cardiovascular system. Be creative with this stimulation. The polio virus did not damage the sensory portion of the nervous system. Feelings, both physical and emotional, are still potentially available for expression and perception. Linda Van Aken and I wrote an article about PPS and Intimacy about a year ago. That article attempts to address this issue.

 

19.Be more dependent: Not only should you allow others to help, but also you should tell them how to help you. If your spouse is your main helpmate, be cognizant that he/she also gets tired. If you ask your spouse or anyone else to fetch or fix things for you, be organized about your requests and minimize their physical effort and time consumed. Simply keeping a list of your needs or requests can help conserve your spouse or helper’s energy and reduce the development of interpersonal tension. It is very difficult for PPSers to relinquish some

 

controls, but in doing so, avoid trying to control your spouse or helper. Communicate what you want or need, but be courteous and grateful in the process.

 

20.Roll more, walk less: When walking becomes more difficult because of new weakness or fatigue, get some wheels and roll more. If you can still walk some and rise unassisted from a chair, a scooter might be advisable. A battery-motorized scooter allows you greater and safer mobility. Scooters are great for malls, touring your neighborhood, and even in parks. If your weakness is profound, an electric wheelchair is probably what you need. Most health insurance carriers will pay for most of the cost of a scooter or electric wheelchair. Even Medicare covers these devices as long as your physician orders it. Once you learn the value of electric mobility, you may want to invest in a van and a lift to be able to take your wheels wherever you go.

 

21.Use assistive devices. Many of us have found it necessary to acquire new braces, canes, and crutches in order to keep walking and maintain balance. Accepting this need may be a step back in time for some. Don’t resist this help. By all means, do anything to prevent falls. Do what is wise and necessary. Install grab bars, elevate the toilet seat, use pick sticks, and install ramps. I think it is wise to carry a cellular phone on your person (or wheelchair or scooter) at all times. Use your brain to help yourself. Only you know what you need and what may help.

 

22.Never, ever give up. During the struggle with acute polio and its aftermath, many of us were told, “No pain, no gain.” We were encouraged to overcome adversity and that it was all up to us. With PPS, we know that attempting gain will bring more pain and no real gain in the process. However, we still need to retain our persevering and hopeful approach to life. Giving up will serve no positive purpose and is a sign of depression. We should press on, but pace the race. We should be more like the turtle than the hare.

 

23.To be added when a new hint comes from you.

 

Henry Holland, Richmond., Virginia, USA. Henry4FDR@aol.com June 2000.

 

Originally published in the Central Va PPS Support Group (PPSG)‘s newsletter, The Deja View, in the June/July 2000 issue.

 

Newsletter Editor’s Note. The logo for the 2nd Branson Internet Reunion T shirts was a turtle in a wheelchair with the caption “Still in the Race”.

 

Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available.

 

My experience of PPS

 

by Janice Eary.

 

When Hilary suggested I write about my own experience of PPS, I readily agreed. However when I came to write this I found it much more difficult than I had expected.

 

I had intended it to be upbeat, how fortunate I was to have a sympathetic, supportive, GP, and to have found an equally supportive Orthopaedic Consultant. But I realised as I began to write that I didn’t feel in the least bit fortunate. I was in fact full of unresolved anger and a fair amount of self pity. So although what follows isn’t the account I originally intended it is at least an honest one.

 

I contracted Polio, age 5, in 1956. I spent 6 weeks on the children’s isolation ward of Ladywell hospital in Salford.

 

I had bulbar/spinal polio but fortunately, the paralysis only affected the right side of my face, and my trapezium muscle in my shoulder. Following discharge from hospital I had repeated falls. It was

 

found that my legs were weak and the right leg was slightly shorter than the left. I wore a built up shoe and had intensive physio for 5 years. I was finally discharged at the age of 11 and although I would never be able to run or throw a ball, I could live a ‘normal’ life. I became a competitive swimmer and school games captain. Apart from quite severe upper back pain from the age of 15 (due to scoliosis), I put the polio behind me.

 

I qualified as a nurse in 1972, subsequently adding midwifery, a diploma in neo-natal intensive care and a diploma in health visiting to my qualifications. I married in 1973 and have 2 children. Although I had constant back pain, so did most nurses. Osteopaths, chiropractors, acupuncture and rather too many pain killers kept it under some sort of control.

 

I had always had a bit of a chip on my shoulder about not going to university like my brothers (too much missed school meant I had failed my 11 plus). This combined with an increasing dissatisfaction with the health service led me in 1991 to Sheffield Hallam University to start a combined studies degree. At the end of my second year I had a hysterectomy. Because of my studies I was not able to take enough time off to fully recover. Looking back, the symptoms of PPS began then. However I completed my degree, got a good 2-I and found a full time job, as the organiser of a charity-run weekend day care centre for Dementia sufferers and their carers.

 

For the first 2 years I managed OK. I was always tired, but I put this down to the stressful nature of the job. However it got worse. I began to experience pain and weakness in my arms, my back pain got worse, my feet were always blue and cold. That winter I got a bad cold, which turned into pneumonia. I had never had any problems like this before. Antibiotics didn’t work and I ended up on steroids for 3 weeks. I was off work 3 months and never felt really well from then on.

 

The pain increased, I couldn’t pick up the heavy tea pot at work, my legs began to ache, and I started using lifts rather than stairs. Over the next 18 months I had 2 further chest infections, I developed pains in my joints and my right ankle kept giving way. From being a lively energetic person who loved her job and was very good at it, I became someone whose prime motivation was to get through what I had to do as quickly as possible so I could get home and go to bed.

 

What the hell was happening to me? Was this ME, cancer, MS, (we nurses always look on the bright side!] Then by chance I read an article in the Guardian about a new book “A Summer Plague” by Tony Gould. The article mentioned something called Post Polio Syndrome and outlined a few of the symptoms. It was like the cartoons! a light went on in my head, I knew instinctively that this was it. I bought the book. My husband searched the Internet. We were amazed at the wealth of information. Then like so many others I marched off to my GP with a pile of print outs, here I must acknowledge my good fortune My GP listened to me took the articles and actually read them! She agreed that this could be the answer.

 

By this time it was becoming increasingly obvious that I could not continue working as I had been. I tried to reduce my hours but my employers were not particularly sympathetic. I could hardly blame them, it was a demanding job and I was no longer able to perform physically and even worse mentally, I was just too tired. However, I was reluctant to take the decision to resign, my daughter was still at university, my son would follow in 3 years and although my husband had a good job we still needed the money. Besides, apart from a year off following the births of my children, I had always worked. I did not exactly relish the prospect of giving up my independence. Also I had never been an exactly keen housewife. However the decision was made for me, when I developed a severe attack of arthritis in my feet, which left me unable to walk for some time.

 

Once I had left work I made contact with the BPF and obtained a list of “sympathetic consultants”. One was fairly close by and my GP was happy to refer me. I had high hopes as did my GP I would get a proper assessment, advice, treatment etc. How naive can you get!

 

I was given an EMG which showed evidence of long standing denervation particularly in my arms and right leg. However I was informed that this was not typical of PPS or even old polio, and anyway, what was I complaining about, he had seen others much worse than me. If this was an

 

example of a “sympathetic” consultant then I was very glad I hadn’t seen an unsympathetic one. He recommended a MRI scan to rule out any neck injury which he felt might be the cause of the EMG findings, I was sure I had not injured my neck but agreed to the test.

 

I left almost in tears, I felt humiliated. Perhaps I was a wimp, who should stop moaning and get on with her life. I waited 9 months for the scan. When the results came through, I realised just how little notice had been taken of what I had to say. Quoting from the letter, he sent to my GP:

 

“I am pleased to say that the MRI scan is essentially normal, but there are signs of wear and tear. In particular there was no evidence of any lumbar disc disease which was I think the main thing to exclude here. I think it is important that this lady be encouraged to be as active as possible.”

 

He had asked for a scan of the one part of my back that gave me relatively few problems. There had never been any suggestion that I might have a lumber disc problem, it was my neck.that was suspect. I was so angry. Not only had I waited 9 months for a very expensive test, but the wrong part of my body had been scanned. I realised he had not listened to me at all. I did not fit his preconceived idea of a post-polio patient he was not interested.

 

I felt devastated, I had seen the “expert” and been dismissed, there was no where else to go. Fortunately my GP thought otherwise. Her attitude was we would fight this together. She had no doubts that my problems were due to the late effects of polio. She referred me back to the Orthopaedic Consultant at my local hospital who had seen me in the past. Here my reception was quite different. I was given a diagnosis of late effects of polio with new atrophy. Although he admitted he had little experience with post-polio I felt I was listened to with respect. It made such a difference.

 

In the 3 years since I gave up work I have continued to deteriorate at an alarming (to me) rate, so much so that I am sure I would now qualify as a bona fide post-polio patient even to the ‘experts’. The knee and ankle of my right leg are both unstable, my ankle points in and my knee points out, my legs and feet are always blue, no more mini skirts for me! In fact no skirts of any description. Otherwise my symptoms are much the same as anyone else with PPS. Increasing weakness, fatigue, muscle atrophy, pain etc etc.

 

My GP continues to be a great support. I think it has also helped being with this practice since I was 10. All my notes relating to the original polio are available. In fact the Doctor who originally diagnosed the scoliosis in my upper back when I was 15 and who wrote numerous letters to the Matron supporting my application to train as a nurse when doubts were raised about my physical ability to nurse, has only recently retired. They know me, know what I used to be able to do. I have a sympathetic Consultant, a good specialist neurological physio, and most important a good husband and 2 wonderful children. In comparison to many others I am fortunate and should be grateful, but most of the time I am not.

 

I am angry and frustrated that there is still so little knowledge or acceptance among the medical fraternity and the government of the problems faced by us old polio’s, Once again the UK is 10 years behind the US and some of Europe. Perhaps it is cynical of me, but one can’t help wondering, if their attitude is, wait a few years and the old polio’s will all die off and that will solve the problem.

 

But I am even more angry and frustrated with my own body for letting me down. Mind over matter no anger works. I feel guilty at the strain, financial and emotional, my condition has put on my husband and children, and the anxiety caused to my parents. Didn’t they suffer enough when I contracted polio in the first place?

 

Most of all I am mad at myself. I have read every thing I can get my hands on about PPS. I read the LincPIN from cover to cover, know all about pacing and energy tokens, the importance of diet

 

adequate rest and giving up smoking! Conserve and preserve, using aids etc. I know what I should be doing to help myself, the problem is don’t do it. This is partly due to the problem of many in the so called caring professions, we can dish it out but can’t take it back. We can give advice, listen to peoples problems, empathise, provide support etc but find it very hard to be on the other side of the fence.

 

There is also denial: it is unlikely that I will be able to work again. But there is that little voice in my head that says this is only temporary, I will recover, go back to work and everything will get back to normal. If I am honest, it may also have something to do with that infamous Type A personality.

 

Whatever the reason, I know the answer lies in my own hands its my body, my responsibility. I also feel bitter that the sacrifices made by my family to enable me to get my degree have resulted in only 4 years gainful employment. I also find it difficult to accept that my future is not going to be the one I planned. Even more difficult to reconcile is the fact that my husband isn’t going to get the future he deserves.

 

As you may have gathered, I am no Pollyanna. However I must admit that there are some positives in this situation. For the first time in my life I have that most precious gift, time. I may not have worked out what to do with it yet, but I am determined not to be on the scrap heap at 48. The knowledge that others with far more difficulties than me have succeeded in turning their lives around gives me the impetus to do the same. I also know that I am very lucky. Many, if not the majority of those who contracted Bulbar/Spinal Polio either died or required artificial ventilation for the rest of the lives. When I am feeling sorry for myself try and remember it could have been a great deal worse.

 

Janice Eary – <Janiceeary@hotmail.com>

 

From Marsha in Texas <marsha@ccms.net>WHOOHOO – http://www.whoohoo.co.uk/This site takes an English phrase and translates it into various British accents including Geordie (Newcastle), Brummie (Birmingham), Yorkshire, Scottish and Posh dialects. There’s also an Ali G translator for fans of the British TV show.

Lincolnshire Post-Polio Library

 

Articles added, with grateful thanks to the authors, since last newsletter and not included in this issue.

 

Reminder – All the medical articles printed or referenced in this section of the LincPIN’s are sourced in full in the Lincoinshire Post-Polio Library on our WebSite. For those of you without access to the Internet who would like copies of any article they are available from us for the price of photocopying. Members post free.

 

Title: Post-Polio Syndrome: Pathophysiology and Clinical Management

 

Special Note: This is a long article (226K). We have also produced a multidocument version comprising fifteen separate shorter documents which reflect the section headings of the original article. Multi-document Version Author(s): Anne Carrington Gawne and Lauro S. Halstead.

 

Original Publication: Critical Reviews in Physical and Rehabilitation Medicine, 7(2):147-188 (1995).

 

Abstract/Extract: Post-polio syndrome (PPS) is a progressive neuromuscular syndrome characterized by symptoms of weakness, fatigue, pain in muscles and joints, and breathing and swallowing difficulties. Survivors of poliomyelitis experience it many years after their initial infection. Although the etiology for these symptoms is unclear, it may be due to motor unit dysfunction manifested by deterioration of the peripheral axons and neuromuscular junction, probably as result of overwork. An estimated 60% of the over 640,000 paralytic polio survivors in the U.S. may suffer from the late effects of polio. Their physical and functional rehabilitation care presents a challenge for practitioners in all disciplines. To evaluate these symptoms, a comprehensive assessment must be done, as frequently PPS is a diagnosis of exclusion. Care of the patient with PPS is best carried out by an interdisciplinary team of rehabilitation specialists. This article reviews the epidemiology, pathophysiology, characteristics, assessment, and rehabilitation care of the patient with PPS.

 

Benefit Article

 

by Cathi Penman.

 

thom_and.cathi@virgin. net

 

[Newsletter Editor’s Note. Cathi is a subscriber to the UKFMS – email list ukfms@egroups.com.. FM is Fibromyalgia. We monitor this list as there are many overlaps with our condition and having read Cathi’s story about her Benefits Claim she agreed to write an article for our newsletter. We have members going through the minefield of Applications, Reviews and Tribunals at the moment, having similar problems to Cathi. One member awarded full mobility and high rate care has suddenly had all her benefits taken away for the second time and is now having to wait for a date for a Tribunal! Why is this allowed to happen? We believe this is mostly due to the lack of knowledge of polio and its late effects by the medical and government agency staff that assess us – and continues despite many letters and medical articles sent over many years by ourselves and the BPF.]

 

The Disability Living Allowance Claim Pack should come with a government health warning – ‘Don’t Try This At Home.’ If you do, it’s a case of ‘Be afraid, be very afraid!’

 

My first application for DLA, six years ago, was turned down following a visit by a Benefits Agency GP. He was an extremely charming man, who seemed very caring and spent more time telling me of his work for the Labour Party than he did examining me. I strongly believe that this was due to a prejudice against fibromyalgia and chronic fatigue syndrome.

 

My first mistake had been to ‘go it alone’ – filling in the forms myself without aid of a safety net such as the help of a welfare rights worker, Citizens’ Advice Bureau, or specialist solicitor. Luckily I clued up on this very quickly and engaged help when it came to my appeal.

 

It would seem that the GP’s report must have been ‘way off’ as after appealing I went from being awarded absolutely zilch to the higher rate of both care and mobility!

 

I would advise anyone who is thinking of applying to first get in touch with one of the aforementioned organisations, as they have a fund of experience when it comes to filling in the interminable forms. In addition, if you have a sympathetic hospital consultant, ask him for a letter of support, stressing that it should not only detail his diagnosis, but how this affects your daily life. This is crucial. I’ve had people say to me on countless occasions – “Well you’ll have no trouble, you obviously have ‘physical’ things wrong that can be picked up on X-ray, they can’t argue with that.” My reply is: “They can and they do.” It is not the ’cause,’ it’s the ‘effect’ every time.

 

Please also remember that the Benefits Agency are not in the business of being fair, if they were, they would actively advertise benefits and there would not be so many awards made at tribunal

 

level, it’s as simple as that. They are in the business of saving the government money, whichever political colour it may be. It is often said that only the ‘best actors’ get DLA – whilst I wouldn’t agree with the generalisation, I would say do not try to ‘be brave’ and do not exaggerate what you can do. The visiting GP will only write that you are ‘coping well with your disabilities’ and therefore don’t need benefit.

 

If, as I was, you happen to be refused, I would first ask for a copy of their GP’s report as you will undoubtedly be able to find holes you could drive a double-decker bus through. In my case, the welfare rights worker noticed the GP had written that I could easily walk “100 yds over any terrain.” He had merely asked me to walk across my living room carpet and verbally noted that I had difficulties, so how he could arrive at this conclusion was beyond me – and thankfully also beyond the Independent Tribunal.

 

There does seem to be a definite bias, on the part of Benefit Agency hotline staff and their GPs, against conditions such as FMS and ME/CFS. A friend recently had a DLA Periodic Review. She was unhappy with the decision and rang Blackpool. The first woman she spoke to said she thought she’d had an excellent result, as she hadn’t had her benefit completely taken away! Later, a gentleman who described himself as a ‘graduate training officer’ said it will soon be policy to take away the mobility component from FMS/ME sufferers, because ‘no physical problem exists’. His atitude was disgraceful, and whether this was a personal opinion or an official one remains to be seen, as a written complaint has been sent to my friend’s local MP, the Director of the DBU and Hugh Bayley MP (the Under Secretary of State for Social Security). When it comes to complaining remember: always go to the top!

 

My original award was for five years and I had to make a re-application last year. I had been told at the original tribunal that I would have had a ‘life award’ but they did not think this was appropriate due to my age – being under 40, despite my condition being diagnosed by my rheumatologist as “permanent, irreversible and degenerative” (this did not necessarily include the FMS/CFS – although he did say the FMS was incurable, but controllable).

 

I re-applied and after a further not so charming GP’s visit, had all my care component taken away. When the GP arrived, I was sitting in my wheelchair, with a neck brace and bi-lateral wrist and thumb splints, yet he said I needed no help with personal care! My husband was present and we explained that I cannot chop vegetables, open tins or even get the tops off my medication bottles without help. I also suffer from the sleep disorder which in my case involves very prolific dreaming, graphic nightmares and night-terrors where I have to be woken up for my own safety. This had previously been noted by a DSS officer who stated that I categorically qualified for the higher rate of care because of this condition which necessitated care throughout the night.

 

We explained that because of my short-term memory loss and lack of concentration, I have to have my medication monitored as I invariably forget what I have taken. The GP was quite scathing and said: ‘I hope you aren’t trying to insinuate that there’s an element of dementia here?’ When we told him it was down to fibro-fog it was obvious from his face and body-language that he hadn’t a clue what this was. Furthermore, on examination, he pressed down with both hands and his full weight on my shoulder causing me to cry out with the extreme pain. I had residual pain for well over a month afterwards (although in his report he stated he had ‘touched my clothing lightly’). I did not even wait for a decision before registering my disgust with this treatment, but nevertheless it came as no surprise to find my care component had been rescinded.

 

I have always believed that in dealings with the Benefits Agency, ‘the best form of defence is attack’ so with the invaluable help and support of my husband we mounted an all-out campaign. I partly dictated letters, my husband did the rest, to the Benefits Agency detailing my concerns and when I didn’t get a reply within the stated time limit, I wrote again pointing this out. I wrote asking for a copy of their GP’s report and when this didn’t arrive within the promised time, I wrote again. When no reply was forthcoming I wrote to their customer services department. I also engaged the help of my local MP who in turn wrote to the Director of the DBU and Hugh Bayley MP.

 

The GP’s report stated that my condition was “only partly due to physical factors” and it was quite evident that he thought was ‘swinging the lead’. I am convinced he was of the ‘old school’ and thought FMS and ME/CFS was ‘all in the mind’. In my letter of complaint I pointed out that FMS is recognised by the World Health Organisation and that it really isn’t up to a humble GP to contradict this. I also pointed out that the diagnoses of my conditions had been arrived at by hospital specialists, with the benefit of X-rays, CT scans, Dexa scans and nerve conduction tests and their effect on my life was clearly demonstrated in the letters of support from my rheumatologist. I asked how they could possibly over-rule this overwhelming medical evidence on the opinion of a GP who had arrived late for his appointment, made a cursory examination, rushed through the form, paraphrasing my replies and showed an obvious ignorance of the conditions he was supposed to be advising them on!

 

I received an apology from SEMA Medical Services apologising for the GP and saying that after his report had been scrutinized by one of their doctors they had found it was “not fit for the purpose intended”. My benefit was restored on review and I did not need to suffer the added trauma of a tribunal.

 

I am most concerned that the average applicant for DLA suffering from FMS/ME/CFS will be fighting a losing battle from the word go.

 

I am lucky that I am an ex-journalist and reasonably articulate. I have amassed quite a lot of information and what I don’t know personally, I do know where to find the information. I also have no fear making a fuss and getting MPs and government ministers involved. I always believe in complaining at the highest level. I feel heartily sorry for those who give credence to what Benefit Agency doctors report and think that because the doctor says they don’t need benefit, they must be malingering – there are people like this who give up at the first hurdle and this is exactly what the BA wants!

 

When I was first awarded DLA I rang the Benefits hotline to ask if I could claim Incapacity Benefit. I was told that I could not as, having been a student, I did not have the required amount of National Insurance contributions. I asked if there was any other benefit I could claim, but was told there wasn’t. I found out over five years later that this wasn’t the case and that being on the higher rate of care, was automatically entitled to Severe Disablement Allowance. The Benefits Agency advisor had, by giving me the incorrect information, wrongly denied me over £10,000 in benefit! Suffice to say, I never telephone the hotline now. I always write, then I have a permanent record of my letter to them and any reply. If I should find I’ve been given incorrect information in future, I will always have written evidence, rather than ‘my word against theirs’. Of course in a situation like this the BA will only backdate benefit for 13 weeks. However I’m sure, had I been guilty of defrauding them for a period in excess of five years – they would certainly be looking to get more than 13 weeks benefit back from me!

 

Incidentally SDA is being phased out for new claimants by April 2001, so anyone who feels they may qualify should get the application pack now – let’s face it, the BA are hardly likely to advertise this or any other benefit. Any private company operating in this underhanded manner would no doubt have been sued and bankrupted many years ago!

 

Finally, anyone who is receiving DLA and has had a ‘Periodic Review’ since the present government came to power please note the following important information. I have recently found that the BA in Blackpool have been using the incorrect criteria in their decision making regarding these reviews. The purpose of the Periodic Review, as stated by Hugh Bayley MP, is to review benefit to make sure that claimants are receiving the correct benefit. This means that the benefit may be increased, decreased, left as it stands, or taken away completely. However BA staff have still been using the previous government’s Benefit Integrity Project rules which do not allow for an increase in benefit. This means if claimants have suffered a deterioration in condition, warranting an increase in benefit, it will not have been noted or paid. I would suggest that anyone who feels this may include them, should write directly to the Director of the Disability Benefits Unit, Mr John Sumner, at the

 

Disability Living Allowance Unit, Warbreck House, Warbreck Hill, Blackpool FY2 0YE, stating their case and also send a copy to their local MP and Hugh Bayley MP (Under Secretary of State for Social Security) at Richmond House, 79 Whitehall, London, SW1A 2NS.

 

I would also urge that anyone who comes up against prejudice towards FMS/ME/CFS or similar from the BA GPs should also write to the BA Customer Services Department, sending a copy to their MP. These conditions are recognised disabilities and prejudice against them may even be illegal.

 

[Newsletter Editors note – we sent an analysis of the pages in the guidance booklet for doctors assessing for benefits on polio and its late effects and requested that this be updated with some urgency. The Medical Advisor who replied asked for more information which we sent. We will chase this up.]

 

The teacher led the class with the Pledge of Allegiance, and instructed them to put their right hands over their hearts and repeat after him. He looked around the room as he started the recitation, “I pledge allegiance to the flag…”When his eyes fell on Little Johnny, he noticed his hand over the right cheek of his buttocks. “Johnny, you need put your hand over your heart.”Little Johnny replied, “It is over my heart.”After several attempts to get Little Johnny to put his hand over his heart, the teacher asked, “Why do you think that is your heart?””Because, every time my Grandma comes to visit, she picks me up, pats me here, and says, ‘Bless your little heart,’ and my Grandma wouldn’t lie.”

‘Removers of stuck toast in Toasters’1. Get a package of 5/8″ craft sticks – they look just like tongue depressors.2. Make or somehow get some pieces of wood that measure 5/8″ X 5/8″ X 5/8″. You can cut a 5/8″ dowel to 5/8″ lengths if you wish. I think the tongs we have at the toaster actually have 1/2″ dowel for the spacer.3. Put white craft glue or yellow wood glue on the two opposite sides of the blocks of wood and apply one end of the craft sticks to the glue. Clamp or wrap tightly with rubber bands and then adjust so that the sticks are parallel and even. Set aside for several hours, preferably overnight.4. Remember to turn off the electricity before trying to remove that elusive piece of toast.Art Coburn <artinfla@juno.com>

Annual General Meeting – Saturday 30th September 2000.Venue for meeting Ancaster Day Centre, Boundary Street, Lincoln.

 

Boundary Street is West off the A1434, 100 yards south of the roundabout junction with the A15 at South Park and 10 yards north of the Pedestrian Lights adjacent to DC Cook Motors on the A1434.

 

Ancaster Day Centre will be open from 9.00 am. when the salad buffet lunch will be prepared and stored in the refrigerated compartments. Any help towards this would be appreciated. Tea and coffee will be available during the day.

 

The Annual General Meeting will start promptly at 10.30 a.m. Cost for the day is £3.50 with lunch, £1.00 without lunch.

 

12.00 p.m. Approximately. Talk* and question time.

 

1.00 p.m. We will serve buffet salad lunch, 2 meats, quiche, green and other salads, roll and butter.

 

Vegetarian and other diets catered for by request. 2.15 p.m. Two talks* of 35 mins each.

 

3.30 p.m. Tea and Coffee will be served. Raffle drawn. (Donations of prizes welcome) Followed

 

as soon as possible by Question Time. 5.00 p.m. The building will be closed.

 

Talks* planned are on Claiming Benefits and Appealing against decisions. Orthoses by Ken Spooner from Ambroise UK Limited and Information from the GINI Conference by Hilary Hallam. At the time of going to press we have been unable to confirm the time for the Benefits talk. Ken Spooner and Hilary Hallam will be there all day.

 

Anyone who wishes to stay overnight. The Holiday Inn Express have given us the rate of £35 per room, single/twin/double which includes complimentary continental breakfast for all occupants. It is the same price for single or double occupancy. Anyone wishing to share a twin room please get in touch.. This rate is for Friday/Saturday and Sunday night. Please contact the hotel direct to book rooms mentioning the Lincolnshire Post-Polio Network on Lincoln (01522 698331). The Holiday Inn Express is on Whisby Road just off the A46 Bypass behind the Pride of Lincoln.

 

There will be members at the Holiday Inn from 2.00 p.m. Friday to greet you. Suggested meal at 6.30 p.m. at the Pride of Lincoln adjacent – essential that you let us know by 25.9.2000 so that we can book this. Returning to the Holiday Inn Express Bar for the rest of the evening at 8.30 p.m.

 

Saturday we will adjourn to the Holiday Inn Express Bar for an informal evening of chat and laughter as last year. Take Away meals can be ordered and eaten in this bar or your room as the Hotel does not have a restaurant or you could eat elsewhere and then join us.

 

Nominations for all posts* except Vice Chair with specific responsibility for the WebSite are requested in writing by the 30th August 2000.

 

Currently:

 

Chairman Vice Chairman	Christine Ayre Standing down as Chairman.Bud Robinson Standing down as Vice Chairman.
*Vice Chairman with executive responsibility for the WebSite will remain with Chris Salter.
Secretary	Hilary Hallam Standing down as Secretary as nominated for Chairman.
Treasurer	Jean Tapper	Standing down as Treasurer, prepared to stand as committee member.Prepared to stand again.
Committee	Phil Bilton
Member

Committee

 

Member

 

Frank

 

Grimmitt

 

Prepared to stand again.

 

Committee

 

Member

 

Myra McManus

 

Standing down.

 

Committee Vacant.

 

Member

 

Nominations have so far been received for: Chairman Hilary Hallam. Vice Chairman Vacant.

 

Vice Chairman Chris Salter Executive responsibility for the WebSite.

 

Secretary Wendy Grimmitt. Treasurer Vacant. Committee Member Phil Bilton. Committee Member Frank Grimmitt. Committee Member Jean Tapper. Committee Member Vacant.

 

WE NEED MORE NOMINATIONS PLEASE.

 

Committee Meetings are held every two months in the Lincoln area to suit those attending. Recently they have been on the third Wednesday of every second month. However we are prepared to consider a weekend morning or early afternoon. We do not have the energy to have meetings in the evenings.

 

If any members or family members are interested in joining the committee you would be most welcome. If you would like more information about the work involved then please get in touch. Consideration to holding committee meetings using conference phone or via the internet for anyone unable to get to Lincoln are being looked into.

 

N.B. Please tell us as soon as possible if your newsletter has not arrived when expected, or if you have not received anything you have requested.

 

AGM attendence and nomination slips were included with the hardcopy edition of this newsletter mailed to all members in August 2000.

 

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177

 

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year. (All UK Memberships payable by Standing Order – Form on request)

 

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

 

European Membership – LM £125- Member £12.50 a year- Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail.

 

(US$ checks to LincsPPN c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA) Other Countries please contact for details.

 

All donations will be gratefully received.

 

LincPIN Newsletter – October 2000

 

Articles for publication by September 30th – Publication date October 10th 2000 All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to

 

The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840

 

info@lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue12.html> Last modification: 10th April 2009.

 

Last information content change: 10th April 2009.

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 11 – June 2000

 

CONTENTS

 

Editorial by Hilary Hallam.

 

Almost everyone who contacts us complains that they are not getting appropriate assessments,

 

diagnosis, advice and treatment. A Lincolnshire Post-Polio Network Members offers us a

 

Summary of Clinical Diagnoses, Comments and Advice given to her.

 

Polio Above The Neck Susan Perlman, MD.

 

Voice Care provided by Miranda Davis, Speech and Language Therapy Services, Lincoln District Healthcare NHS Trust. A Qualitative Survey of Postpolio Syndrome in the Leeds area. S. A. Arshad, St. Mary’s Hospital, Greenhill Road, Leeds.

 

The Vaccine Victims Support Group.

 

Reflections by Christine Ayre.

 

Media Events.

 

Lincolnshire Post-Polio Library Articles added since last newsletter with grateful thanks to the authors.

 

Buying a bathing suit.

 

Chart showing why we get muscle fatigue.

 

The Long-Term Medical Conditions Alliance.

 

Annual General Meeting Information.

 

Contact Information.

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult

 

your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

I am in the last few days before leaving for the USA. This issue is 4 pages smaller than usual and published about 10 days early. The next issue will be a bumper issue with information collected from the trip and also published a few days early.

 

Complaints – We have realised that we cannot continue complaining about services if we do not inform the relevant authorities of the problems. We do understand – and personally – that to add the stress of complaining to the minefield of getting appropriate medical help does not help our condition. A member has courageously written a full report of her difficulties for her Health Authority in the hope that by detailing the situation it can be seen that most appointments were inadequate and wasting NHS money. A synopsis is provided on the next two pages. If you write or visit with your M.P. then please send a copy or ask that they contact our MP, Gillian Merron. The more MP’s that are aware of our particular difficulties and that it is across the UK, we hope the more chance we have of improving the situation. Don’t forget to include a copy for us, or write to us with the name of your MP and we will do a letter for you. Pages 4 – 5.

 

Main Article – Polio Above The Neck. This article has been included because we are getting reports from a few members that they are reliably informed by the health professionals they have seen – including neurologists – that the polio virus does not affect any part of the brain only the spine. There are other articles in our Library. It also gives important information on swallowing. Pages 6 – 9.

 

Secondary Article – Voice Care. This article has been given to us by Miranda Davis, Speech Therapist with the Speech and Language Therapy Services in Lincoln. Miranda has offered to learn more about Polio and PPS and help by giving talks and writing future articles. Pages 10 – 11.

 

Dr. Ali Arshad has given us the results of his survey on PPS mostly in the Leeds Area. We are often in touch and he tells me he has been giving talks in Yorkshire trying to promote the awareness of the condition. He also wrote an article in Yorkshire Medical from which we had a call from a 38 year old Registrar in an A&E Department who had polio as a child and had been looking for reasons for his new symptoms for 18 months. His 20 minute call ended with that’s the best consultation I have had in years and then laughed saying “and you couldn’t even see me”. Pages 12 – 14.

 

Media Events – Two recent Lincolnshire media events. One is the 19 minute broadcast on Radio Lincolnshire. If you know someone with a computer and access to the Internet you can listen to it on our WebSite. A Transcript will be available later on. Pages 16 – 17.

 

Long-Term Medical Conditions Alliance – AGM and speakers – May 10th 2000. I attended this AGM in the heart of London and was impressed with achievement of this 10 year old organisation. Page 19.

 

Annual General Meeting – September 30th 2000. For latest information see the back page. Neurosciences Forum with Lincolnshire Health Authority – A meeting was held on May 18th

 

where I did a 15 minute presentation on Post Polio Syndrome and why we are having difficulty in getting correctly assessed and diagnosed. Much interest was shown by all groups in the fact the single one-off Manual Muscle Testing overgrades our muscle ability giving health professionals a false impression. It would appear that we are not the only condition where this will apply. At the last meeting I asked that all groups reported their ten top gripes as I believed they could be 80% the same. It came out at nearly 100% for the top three. The main issue that we have been trying to get across since we first approached the LHA in mid 1997 is statistics. The specification for Neurology that we discussed in 98/99 showed the top 16 neurological conditions with PPS, ME, Fibromyalgia and many others not included. The bottom condition was Myasthenia Graves with 7 patients when in fact we learned that day there are at least 114. We learned that Statistics used are the National

 

Figure divided by the population of Lincolnshire. At last we proved our point and Deborah James from the LHA will now approach the Primary Care Groups and ask them to put just one question to their members. How many of your patients have the following neurological conditions? Roosevelt Warm Springs Institute for Rehabilitation PPS Clinic – With grateful thanks to Dr. Anne Gawne we will be spending two days meeting with her multi-disciplinary team, PPS Support Group and other Polio Survivors from other PPS groups driving across State.

 

GINI 8th International Post-Polio and Independent Living Conference, St. Louis, Missouri, June 8th to 10th 2000. On the 8th June I do a 12 minute summary following Dr. Gawne and her teams presentation on the roles of a holistic multi disciplinary team and on the 10th June Richard and I share the full presentation – Assessing our activities to more effectively manage our lives and provide the medical profession with information on the changes taking place – which includes audience participation. Another Lincolnshire resident and LincsPPN Member Peter Jay, the Voluntary Welfare Visitor for the British Polio Fellowship is also speaking. The majority of the speakers are medical professionals, so it’s a great honour for two polio survivors from the UK to be given this opportunity for which we are both grateful.

 

PRESS RELEASE IN BRANSON, MISSOURI.

 

Reunion: Internet Polio Survivors will again meet in Branson for fellowship. Date: June 10-13,

 

2000 Place: Lawrence Welk Resort, Branson, Missouri, U.S.A. TV program Monday 12th June 2000 with Steve Grant of the Newsteam. www.ky3.com Millie Malone and I will be representing the over 50 polio survivors and supporters present at this event. Polio epidemics were common in the mid 1900’s. Even after the vaccine was developed many people contracted polio from the vaccine or because it had not reached their area of the country. After the vaccine was developed and many survivors recovered some or most of their mobility, medical professionals turned their attention to other diseases thinking this one was conquered. Survivors then started experiencing symptoms such as new muscle weakness, debilitating fatigue, muscle cramps and breathing problems. Even those thought to have mild cases of polio and some who thought they had a case of the flu came down with similar symptoms. After determining there was no other cause the medical profession determined these symptoms were the Late Effects of Polio or Post Polio Syndrome. No standard treatment was determined and not much was being done to help these survivors. In an effort to learn more about these new symptoms and what could be done, many turned to the Internet. A few email lists started where survivors could talk to each other. Through these lists survivors learned about the Late Effects of Polio or Post Polio Syndrome. By joining together they helped spread information to not only Internet users but also many others including medical professionals. Today there are several email lists and many web sites to learn about Post Polio Syndrome. One by-product of the email lists was meeting new people online. It was nice to share with others who knew what you were going through and friendships developed. Out of this came a meeting of the Internet Polio Survivors in 1999. This was such a success that it was determined to meet again. Although this Reunion will not be a conference much information will pass from person to person. The emphasis here will be on fun and fellowship.

 

Contact: Tommy Conrad, HC 3 Box 3695 Theodosia, MO. 65761

 

Tel:- 001-417-273-4335 Email:- tlcon@webound.com We will also be meeting up with many Polio Survivors (some of them USA members of the LincsPPN) and PPS Groups and sharing information. This will be my fifth PPS Conference. Without which I would not have learned so much about the condition or been introduced to so many PPS specialists who freely give us of their valuable time when we contact them for information and who give permission to include their articles in the Lincolnshire Post-Polio Library, now over 100 articles mostly from peer reviewed journals. Associaçao Pós-Pólio de Portugal. http://www.geocities.com/HotSprings/Resort/4652/ Antonio Cardoza Pinto from Portugal contacted us recently about the new Portuguese PPS Association and

 

is now flying across for the GINI Conference and the Branson Reunion.

 

POLO SHIRTS with the new Lincolnshire PostPolio Network Logo on them. David Clark – Snickers Workwear has kindly donated the cost of making the disc for these shirts They are white polyester cotton 65/35%, collar and 3 buttons, with a breast positioned embroidered logo of 13,500 stitches! Sizes available are S 34 -36, M 37 – 39, L 40 – 42, XL 43 – 45, XXL 46 – 48, XXXL 49 – 51 and are priced at £10 with the Logo on, and £13.50 if you wish your Christian Name to appear below this. Please send your orders and cheques, which include postage direct to you, to the LincsPPN.

 

Almost everyone who contacts us complains that they are not getting appropriate assessments, diagnosis, advice and treatment.

 

We have realised that if we do not let the doctors, hospitals, benefits agency, appeals service etc., know that we are unhappy with the services we are getting then nothing will be done to put the matter right. The main reason for not complaining is that we are already having a stressful time trying to get medical help and the correct benefits – or fighting to get them reinstated after they are withdrawn for no reason and more stress is not a road we wish to go down. We are also concerned that if we complain we will get less help as the complaints procedure is not to an arbitration service but to the main service provider. We have to address this issue if we want to see changes. There are many choices. You can write to a letter of complaint to the appropriate body and we suggest you copy it to us, your MP and Lincoln’s MP, Gillian Merron. If you feel that this is too much for you to cope with then you can write to us, giving us permission to use the information in our quest to change the system for polio survivors and stop the waste of NHS and government money as we struggle through the minefield of getting appropriate help.

 

You are not alone, and one member has courageously written a full report for her Health Authority and offers us a synopsis for this newsletter. Her letter states:

 

I understand why other people have declined to make their dissatisfaction official. I realise that by making these comments I may well be blacklisted from any future medical treatment or disability equipment. It is my personal experience that clinicians do not respond well to criticism and like to wield their considerable power to punish those who voice concerns, and so deter others from doing so. I did however feel that, with my multiple diagnoses, my comments might be of help to others to bring about better clinical care. Because we are not curable we seem to be written off, however, with appropriate clinical care we would function better, have an improved quality of life, and in consequence our long term management would be far more cost effective.

 

A Lincolnshire Post-Polio Network Members offers us a Summary of Clinical Diagnoses, Comments and Advice given to her.

 

I spent many weeks in bed with a variety of childhood illnesses including winter bronchitis. At the age of 8 I remember having different breathing problems during a long spell of serious illness. I was off school for a year and when I returned I had a doctors note ‘Excused Games, no stamina’. I vividly remember the way I walked was ridiculed by many of my classmates. At secondary school I

 

played in goal so that I did not have to run. My muscle weakness became more noticeable in 1981 and I started my search for a diagnosis. I found the Lincolnshire Post Polio Network in late ’98. I had had a polio blood titre test done by my GP but the Public Health Laboratory said the results meant nothing as I had been vaccinated against polio when I was 19. However the results were sent to Canada and read by a Virologist who reported that I had had Type I Polio and been in contact with Type 2. My continual progressive weakness and symptoms remain unaddressed.

 

As well as cervical spondylitis, progressive muscle weakness, fatigue, swallowing and breathing problems, intolerance to cold and heat, etc, etc., I have recurrent severe pain at the top of my neck with associated drowsiness that puts me to sleep for days. By chance it was found that (usually, but not always) when a physiotherapist tries to relieve this pain with mobilisation of the neck at C2 (unsuccessfully), the muscle weakness, and some other symptoms, noticeably improve for up to three months. I have full range of neck movement and therefore wonder if something like scar tissue from an old neck injury is exacerbating my problems. I wished for this to be investigated and sought help. I did not get any help but I did get a number of diagnoses.

 

1982 CONSULTANT NEUROLOGIST.

 

Comment	Fluctuation of effort on both upper and lover limbs on testing.
Physical
Examination	Undressed and very lengthy – a full range of tests.
Diagnosis	Cranial nerves are normal. Non specific changes on muscle sampling, probably not significant.Reassure patient on findings.
Advice

1996 NEUROLOGY SENIOR REGISTRAR.

 

Comment	Letter sent to my GP. “No speech or swallowing disturbance” – (I had been reporting swallowing problems since 1992 increasing in severity also speech problems.)
Physical
Examination	Undressed – adequate.
Diagnosis	Some sort of chronic fatigue.
Advice	Do a bit more each day and you will be back to normal.

1998 CONSULTANT RHEUMATOLOGIST.

 

Comment	None.
Physical
Examination	Undressed – very brief.
Diagnosis	Fibromyalgia (although I did not fit the diagnostic criteria given to me of widespread pain in all four quadrants of the body for a minimum of 3 months and at least 11 of the 22 tender points, that were not tested.)None.
Advice

1998 CONSULTANT NEUROLOGIST.

 

Comment	Letter to GP “I dont think well find a pain at the base of the neck.”
Physical
Examination	Undressed – brief.
Diagnosis	ME (although I did not fit the diagnostic criteria given to me of mental fatigue nor unpredictable fluctuation of symptoms from day to day).None.
Advice

2000 CONSULTANT NEUROLOGIST.

 

Comment	“I have not read your notes”. “Polio virus does not cause lesions in the brain.”**
Physical
Examination	Fully clothed – very brief.
Diagnosis	You do not have MS. You have arthritis of the neck and age. (Symptoms commenced when I was 39, and the left side of my body is the same age as my right).”You should not read medical research because you do not have a medical
Advice

degree.” “You should not concern yourself with detail.” “You should not try to treat yourself.” (I replied no one else is attempting to do so).

 

2000 CONSULTANT NEUROLOGIST – Private appointment one week later.

 

Comment	“Polio virus does not cause lesion in the brain”.** “You do not have extensive muscle wasting and therefore cannot have Post Polio Syndrome.” (Wasting is not part of the diagnostic criteria.)
Physical
Examination	Fully clothed – very brief.
Diagnosis	You have MS.
Advice	Walk 1½ miles twice a day. See a neurologist yearly. (The Multiple Sclerosis Society was horrified at such advice. I walked my last 1½ miles in 1992.)

My G.P. diagnosed Post Polio Syndrome in 1998 – Which of these clinicians should I believe all, some or none? What about the problem with my upper neck at C1/C2? What about the comment that the polio virus does not cause lesion in the brain?

 

Editors note – The comment about the polio virus not affecting the brain has been said to four members this year. “Polio above the Neck” article follows. There are other articles in the Lincolnshire Post-Polio Network Library mentioning the polio virus damage to areas of the brain.

 

POLIO ABOVE THE NECK

 

with Susan Perlman, MD Reported by Mary Clarke Atwood

 

with editorial assistance by V. Duboucheron & S. Perlman.

 

Reprinted with permission from the Rancho Los Amigos Post Polio Support Group

 

Newsletter April 2000

 

Neurologist Dr. Susan Perlman, Director of the UCLA Post-Polio Clinic, spoke at the May 2nd 1999 meeting of the Orange County Post-Polio Support Group. In addition to her responsibilities in the Post Polio Clinic, Dr. Perlman also serves at the University of California – Los Angeles (UCLA)

 

as Associate Clinical Professor of Neurology, and Director of the Neurogenetics Clinic. Previously much attention has been given to post-polio problems involving the limbs – a weak leg, fatiguing arms, etc. These manifestations of Post-Polio Syndrome (PPS) occur in people who had spinal poliomyelitis – the acute infection that affected anterior horn cells in the spinal cord segmentally.

 

People who had nonparalytic polio, by definition had polioencephalitis. They had involvement of those brain areas above the spinal cord, and could well have had poliovirus changes in the brainstem (bulbar polio). So breathing and swallowing problems may be present even in people who ostensibly had non paralytic polio and also in others who may have no complaints about their legs or arms.

 

This report focuses on the problems of bulbar polio and other problems that are now manifested in people who have PPS. The cause of these problems is polio damage that occurred in the upper cervical spine and upward. Bulbar is defined as polio involvement of the motor nerves in the brainstem.

 

Early Studies.

 

Polio autopsy reports following the epidemics of the 1940’s and 1950’s showed signs of acute polio infection throughout the body; it was not just restricted to the spinal cord. There were changes found in upper motor neuron pathways and there were changes found in central brain structures that control alertness, central fatigue, and autonomic functions such as temperature regulation etc. There were also many changes seen in the brainstem itself.

 

Probably greater than 90% of a polio survivor’s motor neurons were somehow affected during the acute stage and had some damage, even if it was not paralytic. Autopsy studies have shown that during the acute attack as few as 3 or 4% of the motor neurons remained intact.

 

There are not many polio survivors seen now who had severe residual effects from the acute bulbar polio infection. This is probably because when there is 50% loss of the motor neurons that control breathing or swallowing, a person is going to be in serious trouble. Many did not survive the acute infection. Those who survived bulbar polio truly are survivors, said Dr. Perlman.

 

Respiratory Problems.

 

There are some people who had only mild breathing weakness with the original polio, (chest wall weakness or a little diaphragmatic weakness) but their breathing centres in the brainstem were actually intact. People who had true bulbar polio had involvement that didn’t trigger breathing – they needed to be assisted until those centres came back. So when looking at post-polio breathing problems, people who had primary muscular manifestations should be included along with those who had bulbar polio.

 

In other parts of the body such as arms and legs, surviving motor neurons remodelled and adopted the injured or orphaned ones in order to take over function. However this was not as common in the brain and brainstem. Since the brainstem has less plasticity and flexibility, it was harder for remodelling to occur to the nerves of the pharyngeal muscles and to those of the upper part of the oesophagus. For years, many survivors have been using compensatory strategies, such as swallowing on the other side of their throat. Those who had residual problems such as vocal cord paralysis may also have been able to compensate for this. But when the muscles on the ‘good’ side of their throat begin to weaken, they become aware of a ‘new’ problem in that area.

 

Muscles that control breathing and swallowing are the same groups of muscles that are involved

 

with speech, to some extent. These groups of muscles are located in the throat. So people with PPS who are having problems with swallowing, breathing, or shortness of breath during activities of daily living, might also complain of speech problems. Although facial, jaw, and throat muscles are controlled in the brain stem, they have rarely been thought of in connection with polio.

 

Are people who had bulbar polio going to be having increasing bulbar dysfunction? The following criteria are used to determine increasing bulbar problems:

 

1. Severity of residual disability.

 

2. Residual bulbar or respiratory signs.

 

3. Later age at onset of acute polio (past age 10).

 

4. (Possibly) recent falls or injuries; or surgical procedures in the pharyngeal area; or weight

 

gain, because it puts more pressure on the diaphragm and pharyngeal area.

 

Fortunately our bodies have several safety factors to assure that breathing muscles meet our oxygen and carbon dioxide demands. The primary muscle for breathing is the diaphragm and the secondary breathing muscles are the external intercostals (the muscles between the ribs). So if a person has a fatigable diaphragm that tires out by the end of the day, the intercostals will kick in and the person will begin breathing from the chest. There are also accessory respiratory muscles that help lift the chest from the shoulders.

 

With post-polio breathing problems, part of the problem is going to be muscular. There may be a diaphragm or secondary assistive muscles not kicking in as well as they should. There can also be central (brain) changes contributing to this, such as decreased respiratory drive, if those centers were affected originally. There may be changes in the chemo-receptors; perhaps the sensors are not sensing carbon dioxide (CO2) build-up as sensitively as before.

 

Scoliosis can also cause restriction of breathing. A person who has a scoliotic spine cannot expand his chest as well so he underbreathes because of it. If scoliosis is getting worse as a post-polio symptom, it’s going to make that aspect worse and will interfere with breathing.

 

When doctors are looking at respiratory problems of PPS patients, they should look at not only peripheral problems and muscular problems, but also central disregulation of breathing as well. All these factors are addressed at the UCLA sleep lab, directed by Dr. Frisca Yan-Go.

 

Recent Findings.

 

Dr. Perlman cited a report (Epidemiology, October 1, 1992) that involved 77 subjects with nonparalytic polio and 474 subjects with paralytic polio. A change in breathing was observed in 10% of the nonparalytic subjects and 12% of the paralytic ones. Swallowing problems were noted in 6% of the nonparalytic subjects and in 7% of the paralytic ones.

 

In the larger ongoing studies at polio centers such as Mayo Clinic, Rancho Los Amigos and centers in Canada, possibly as many as 40% of the people with PPS are having new respiratory complaints. (About 80% of PPS patients complain of fatigue.)

 

Another study of 74 polio survivors who were having shortness of breath found two good measuring devices for patients with increasing respiratory problems:

 

1. Forced expiration (a pulmonary function test) can be very helpful monitor. This test shows how hard it is for a person with PPS to breath out and it requires the use of some of the intercostal muscles and the abdominal muscles. Dr. Perlman recommends this test every year or so for her patients who have significant breathing complaints.

 

2. The other very helpful thing is to monitor (CO2) levels in the blood. The question is not how much oxygen is a person inhaling, but how much CO2 is a person retaining? Is a patient not breathing fast enough? Is the person fatiguing so that he cannot ventilate? It is the amount of ventilation a person gets that clears the CO2. So if your ventilating less efficiently, your CO2 levels are going to go up slowly?

 

For patients at risk, these researchers felt that anything that was in danger of happening could be detected by measuring maximum expiratory pressure and carbon dioxide levels on a regular basis. Swedish research on cardio-respiratory parameters in PPS patients found a significant incidence of deconditioning. This goes back to the old thought that everybody should be doing some exercise.

 

Dr. Perlman says doctors are no longer saying people with PPS should do no exercise; some exercise, conditioning or aerobic exercise, is important. Survivors can improve heart function, circulation, and breathing to some extent by doing something that increases heart rate. These researchers suggested increasing the heart rate to 70% of maximum by using a pool or other equipment. They felt these were tolerable levels for their PPS patients.

 

Researchers in Toronto looked at 3 areas of muscles, (respiratory, diaphragm, chest wall), bulbar symptoms, the control rate, and scoliosis. They found that the control panel in the brainstem was the least important of the group. These people were having problems because of the diaphragm, chest wall fatigue, or due to progressing scoliosis.

 

A few of Dr. Perlman’s patients have experienced increased breathing problems at higher altitudes. Adjustments can be made so those patients can travel at higher altitudes and not feel short of breath all the time.

 

Swallowing.

 

The motor neurons that control swallowing are located in the brainstem. In order to have an effective swallow, groups of muscles are used to insure that the food is chewed, forms into a bolus, and goes down properly. The swallowing center coordinates other activities related to swallowing: chewing, licking, gagging, coughing, sneezing, vomiting, belching, and breathing to some extent (when a person is swallowing, he doesn’t breathe). It is hard to eat or swallow at the same time as breathing, because the two groups of muscles and nerves are competing against each other.

 

There are at least a dozen places in the body where a post-polio patient who had some pharyngeal problems or brainstem related swallowing problems could begin to have trouble now with swallowing. For example, people who have weakness in the jaw muscle as a complication of PPS will find it hard to chew when fatigued. Or people who have a weak soft palate will find that food is slipping into their throat before it is fully chewed and food or drink (especially drink) may be coming out of their nose.

 

Swallowing problems have been identified in recent studies. However, it is rare to see a PPS patient who is having constant choking. Most people can think about it and use their conscious mind to control what is going on, thereby preventing swallowing problems occurring. Any part of the gastro-intestinal tract – from the mouth all the way to the bottom – could be slowed, weakened or not working properly due to PPS. But don’t assume that every symptom a polio survivor gets is due to PPS.

 

Although common pathway are used for breathing and swallowing, not everyone who has swallowing problems has breathing problems and not everyone who has breathing problems has swallowing problems. Bulbar muscles can slowly dysfunction and there can be silent swallowing problems. In a 1991 swallowing study by Dalakas he concluded ‘in bulbar neurons there is a slowly progressive deterioration similar to that in the muscles of the limbs.’

 

Blood Pressure and/or Variable Heart Rate.

 

Can high or low blood pressure be a result of polio and PPS? Can variable pulse rate be made worse, not because of heart disease, but because of post-polio symptoms affecting the area?

 

The average internist may be hard pressed to believe it possible for polio to be related to current blood pressure or pulse rate problems. However, vaso-motor centers that control blood pressure and pulse rate are located in the medulla (in the lower brainstem) and also in the autonomic area of the brain. Since polio damage has been seen in the brain and in the brainstem, this is an area that needs

 

further study.

 

As we understand what was involved in acute polio and the amount of brain that was involved, recovered motor neurons that might have looked quite complete on the surface could actually be functioning on very shaky ground. The majority of motor neurons, in whatever region the poliovirus got to, were probably affected in some way or another,’ said Dr. Perlman.

 

To Contact UCLA Post-Polio Clinic Dr. Susan Perlman

 

300 UCLA Medical Plaza, Suite B200 Los Angeles, CA 90024-6975 Phone +1 310 – 794 -1195.

 

Audio Tape available – A recording of this complete talk is available for $5 + $2 p & p (USA). Contact Ken Baragar, 817 Irving Place, Anaheim, CA 92805-5025 Phone +1 714 – 535 – 2710.

 

Editors notes:

 

1. We will be getting a copy of this tape.

 

2. If I burst out laughing I choke every time. My voice is deepening and if I talk for too long

 

my voice gets hoarse. I started reporting occasional swallowing problems over 4 years ago

 

which was quite worrying. I could not get this assessed no matter how often I asked. The

 

first time I reported it I was told I had not mentioned this before I learned the symptoms of

 

PPS, suggesting that I was making it up. I laugh about it now, but because no one was

 

accepting any of my other symptoms I decided they would think I was really crazy if I

 

mentioned the swallowing as well. Last year my last GP said she had been advised that as

 

there was ‘No treatment for PPS, there was no need to send me for assessment as it would

 

not alter the course of treatment.’ I did comment that I thought my AFO, electric scooter,

 

house alterations, disability aids, physiotherapy and hydrotherapy were treatment, but she

 

did not answer. As usual I had already researched this and learned that worrying about it

 

makes you tense up and makes it worse. The advice was to relax my shoulders, tip my head

 

forward and to the side and I am able to swallow the second time.

 

I changed my GP and as my symptoms are getting a little worse I insisted that these symptoms were assessed and was at last referred to a Speech Therapist from the Lincoln District Healthcare Trust Speech and Language Therapy Services – Miranda Davis. I did not take any medical articles with me this time. I decided that I would just be an ordinary patient. You can’t win though as this was a total change from my previous appointments. I was treated like an adult had my problems explained in technical detail with diagrams as she could see I understood the medical terminology. She admitted she knew little about polio and PPS and asked for more information. Because of what I reported I have to be checked by the ENT Department to ensure there is no other reason for my deepening voice, hoarseness, choking and inability to swallow on occasion. She could not refer me directly anymore she had to write to my GP and ask him to do it. Such a waste of time and money!

 

Miranda gave me the Voice Care article on the next page which she hopes will be of benefit to our readers and assures us that she will be learning more about polio and PPS and will be happy to speak at meetings and help with more articles at a later date. Why can’t more health professionals be like her?

 

VOICE CARE

 

provided by Miranda Davis

 

Speech and Language Therapy Services Lincoln District Healthcare NHS Trust.

 

Voice quality is affected by many factors. Awareness of these is essential for good voice use especially if you are a ‘Professional Voice User.’

 

ENVIRONMENTAL PROBLEMS.

 

Air Quality.

 

Household dust, pollen and chalk are irritants that cause the air passages to become inflamed and dry. This may affect voice pitch and quality.

 

• become more aware of air quality

 

• drink more fluid if air quality is poor

 

• make sure the area is properly cleaned

 

• avoid using dusty chalk.

 

Humidity.

 

A hot, dry atmosphere can be damaging as it dries out the protective mucous membranes of the throat. This can make the vocal folds more vulnerable to trauma.

 

• place a bowl of water above a radiator or near a heat source to humidify the air

 

• keep rooms well ventilated, if possible.

 

Wet, foggy atmospheres can lead to the overproduction of mucous which may affect voice quality.

 

Background Noise.

 

Raising one’s voice over background noise even of low intensity may lead to strain. Speaking at a high pitch and volume is potentially dangerous because the vocal folds are stretched tightly and move quickly.

 

• avoid speaking for long periods of time in noisy circumstances e.g. pubs, discos, parties,

 

swimming pools etc.

 

• try not to shout to compensate

 

• turn off TV or Radio before speaking

 

• reduce unnecessary noise whenever possible, e.g. scraping chairs on uncarpeted floors.

 

Speaker-Listener Distance.

 

Volume of the voice should be varied according to the distance between you and the listeners.

 

• remember when the voice is used at a greater volume you need to take more and deeper

 

breaths

 

• adjust the layout of the workplace or classroom to reduce the distance between speaker and

 

listener

 

• use other noise-makers to attract attention, e.g. whistles, claps etc.

 

• if the listener has a ‘hearing’ impairment ensure you are facing them when you speak and

 

that background noise is minimal.

 

PHYSIOLOGICAL ASPECTS

 

Allergies and Infections.

 

Infections such as laryngitis and pharyngitis cause swollen and inflamed membranes. When you have a throat infection rest the voice and drink extra fluids. If the voice sounds hoarse, rest it for several days if possible.

 

• Inhale steam if you suffer from catarrh. Also useful for tired and strained vocal folds. Allergies, e.g. hay fever, can also result in swollen and inflamed membranes of the throat.

 

Medications.

 

Some drugs can affect voice quality, e.g. inhaled steroids for asthma, antihistamines.

 

• Be wary of over-the-counter throat medications, these contain antihistamines and

 

dehydrants which have a drying effect on the larynx

 

• Be wary of preparations which contain anaesthetics to numb pain

 

• Consult your doctor if any prescribed medication or drug seems to be affecting the voice.

 

Recreational Drugs.

 

Smoking tobacco and other drugs has a profound effect on the vocal tract, both drying and irritating the mucosa. It can cause redness and generalised irritation to the nose and throat. It is also closely related to laryngeal cancer and pre-cancerous conditions.

 

• Stop smoking, if you cannot, seek help to do so

 

• Avoid smoky atmospheres. Avoid other irritants

 

• dusty, chalky atmospheres

 

• dry atmospheres, over humid atmospheres (swimming pools)

 

• banda fluid, fumes from felt tip pens, some solvent-based glues, chlorine etc.

 

Caffeine.

 

This substance is another drying agent.

 

• Reduce excess intake of caffeine found in drinks such as coffee, tea, coca-cola

 

• Drink more water.

 

Alcohol.

 

This is another substance which has a drying effect on the vocal cords and can produce marked changes in voice quality even after relatively small amounts. Spirits are the most damaging.

 

• Avoid alcohol before speaking or singing

 

• If you must drink, take more diluted forms, e.g. wine with soda.

 

Tiredness.

 

Tiredness makes it more of an effort to breathe and speak adequately, therefore there is the possibility of vocal strain.

 

• Ensure that the throat is well lubricated because it becomes drier when tired. Emotions.

 

The voice is a reflection of the emotional state. Consider the sound of the voice of someone who is depressed, or very happy. Voice misuse can be the result of increased tension which has emotional origins.

 

• Identify if you feel anxious or worried

 

• Talk over any worries or problems you might have with someone who is a good listener.

 

Fear.

 

When afraid the breathing rate increases, the heartbeat accelerates, the larynx rises and the vocal folds tighten causing the pitch to rise and the voice to sound tense.

 

Hormonal Changes.

 

Women experience hormonal changes premenstrually. Hormone levels change causing the vocal folds to swell and increase in mass causing the vocal pitch to lower and increase, a husky/whispery quality.

 

• Avoid excessive vocal demands at these times.

 

Dehydration.

 

A dry throat sounds strained and lacking in resonance.

 

• Ensure that there is an adequate fluid intake into the body.

 

Long penods of talking will require frequent intakes of water. Always have water available during these times.

 

Speech and Language Therapy Services 92 Newland, Lincoln, LN1 1YA.

 

Tel: +44 (0)1522 514814 Fax: +44 (0)1 522 513711 29.2.2000

 

EMAIL UPDATE NOTIFICATION SERVICE: You can receive email notification of changes to our WebSite if you wish. This CONFIDENTIAL service is provided free of charge. You can also choose how often you are notified. Read our LincsPPNUpdate section for full details including an optional form for subscribing (you can also subscribe by separate email if you wish).http://www.ott.zynet.co.uk/polio/lincolnshire/changes.htmlREMEMBER, MEMBERS WHO HAVE A COMPUTER AND INTERNET ACCESS, IF YOU WISH TO SUBSCRIBE TO OUR MEMBERS DISCUSSION LIST WE NEED YOUR EMAIL ADDRESS.

A Qualitative Survey of Postpolio Syndrome in the Leeds area.

 

S. A. Arshad, St. Mary’s Hospital, Greenhill Road, Leeds.

 

Lincolnshire Post-Polio Library copy by kind permission of Dr. Arshad. INTRODUCTION.

 

There were six major polio epidemics in the United Kingdom early this century. In the Leeds area, more than 400 cases of Polio were notified between the years 1940 – 1962 inclusive[1]. After the successful introduction of mass vaccinations with the Salk and then the Sabin vaccines in 1956 and 1961, new polio cases became extremely rare.

 

It is known that that many people with a history of polio may develop new symptoms after decades of stable functioning. The time lag varies but the usual period between the onset of these symptoms is about 30 years[2]. The risk of developing these symptoms appears to be correlated with the severity of the original paralysis[3].

 

Most common new health problems reported by Postpolio patients are fatigue, muscle pain, joint pain and weakness. Functional problems include walking, climbing stairs and dressing[4]. The suggestion is that these new symptoms should be labeled as the “Postpolio” syndrome.

 

Table1 Problems experienced by those who had polio many years ago.

 

• weakness, pain or cramp in muscles

 

• increasing arthritis

 

• increasing arthritis secondary to unusual use of muscles and joints

 

• increasing fatigue

 

• skin and circulatory problems secondary to autonomic nervous system involvement

 

• osteoporotic changes leading to fractures

 

• increasing deformity e.g. scoliosis

 

• increased risk of deep venous thrombosis

 

• increasing respiratory problems, including possibly undiagnosed sleep apnea

 

• increasing difficulty with mobility

 

• increasing difficulty with work and activities of daily living

 

• difficulty in obtaining orthoses

 

• difficulty in obtaining suitable wheelchairs

 

A qualitative study was carried out between the months of September and November 1998. Interviews were done on 14 patients suffering from the post-polio syndrome. They were between the ages of 40 and 72 years and eight males and six females. All of them had polio in childhood, before the age of 10 years with various impairments.

 

The aim of this study was to explore possible influences on the perceived quality of life for people with PPS. This is a pilot case series in descriptive epidemilogy.

 

METHOD.

 

A structured interview schedule was used. The questions covered various aspects employment, appearance, social support etc. The answers were analyzed with NUD.IST software[5] using cross-case comparisons [6] assessing the similarities and differences emerging as patterns between and within cases.

 

The interviews were conducted in the patients residences with spouses present in some cases. All questions were answered to the best of their abilities.

 

RESULTS.

 

The results of the structured interview was as follows:

 

1. occupation: 8 were working but had to modify their practices

 

4 had to give up work due to post polio syndrome

 

1 had retired

 

2. family relationships: 11 had supportive families and spouses*

 

2 lived alone and kept themselves in isolation

 

1 had problems with their families understanding their illness

 

3. activites in the house: 10 needed help from their spouses, family members or home help

 

3 managed their own household chores

 

1 was wheelchair bound but had the house fully adapted

 

4. negative feelings: 12 experienced anxiety or depression about their condition

 

2 were resigned to their condition (taking it as it comes)

 

5. sleeping pattern: 13 had disrupted sleep due to pain and exhaustion

 

1 no problem

 

6. personal hygiene: 10 needed help ranging from complete dependence to aids

 

3 managed independently with difficulty

 

1 was completely dependent

 

7. leisure/hobbies: 12 were restricted in amount of time or equipment

 

2 had to give up their hobbies

 

* Out of which only 2 reported a satisfactory physical sexual relationship, the rest had difficulties.

 

CONCLUSION.

 

It is apparent that these symptoms have significant potential consequences for the individuals experiencing postpolio sequelae in their functional capabilities to cope with activities to cope with activities of daily living (ADL). Obviously reports of fatigue, pain, muscle weakness and atrophy, respiratory difficulties have significant effects on mobility. Individuals experiencing PPS note difficulties in walking, using wheelchairs, transferring in and out of chairs, never mind negotiating stairs. As one might expect, mobility difficulties also potentially affects one’s ability to remain employed.

 

In terms of being self sufficient, individuals faced increasing difficulties in dressing, washing among the activities performed at home as well as sexual functioning. In fact respondents have been forced to alter their activities of daily living, expand their reliance upon mechanical aids and personal assistants. Generally PPS sufferers report having to “slow down” in terms of activities in a day to day basis.

 

Not surprisingly these changes have an important emotional impact. The anxiety, frustration, uncertainty and isolation must have a significant influence on one’s outlook and response to the demands of daily living, particularly in light of the likelihood of a more restricted lifestyle. A concrete manifestation of these changes is a decline in one’s capacity to maintain a social life.

 

There may be comorbid or secondary medical conditions contributing to development or aggravation of symptoms. Being a diagnosis of exclusion, there are no specific tests for the Postpolio syndrome[7]. It is therefore important to compare quality of life with other neurological conditions having a similar set of symptoms, to compare differences associated with disturbance of activities of daily living.

 

REFERENCES.

 

1. Medical Officer of Health Reports; Archives, Leeds Central Library.

 

2. Cashman NR, Neurological manifestations of the Postpolio syndrome. Curr Op Orthop

 

1992;3:224-8.

 

3. Jubelt B, Cashman NR. Neurological manifestations of the postpolio syndrome. Critical Rev

 

Neurol 1987;3:199-220. [PubMed Abstract]

 

4. Chetwynd J, Botting C, Hogan D. Postpolio syndrome in New Zealand: a survey of 700

 

polio survivors. New Zealand Medical Journal Sept. 1997; 406-8.

 

5. Anon QSR. NUD.IST; 4th ed.; Melbourne, Australia. Qualitative Solutions & Research Pty

 

Ltd 1997 Data Analysis.

 

6. Miles M, Huberman M. Qualitative Data Analylsis; an expanded sourcebook; 2nd ed.,

 

Thousand Oaks, California. Sage Publications 1994.

 

7. Thorsteinsson G, Subspecialty Clinics: Management of Postpolio syndrome. Mayo Clin

 

Proc 1997; 72: 627-638. [Lincolnshire Library Full Text]

 

Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available.

 

The Vaccine Victims Support Group will be meeting outside the Departments of Health and Social Services on Wednesday 28 June at 2.00pm to press for a proper vaccine compensation scheme for the children who have been severely damaged by the vaccination program. We will then be marching on to St Stephens Gate and will have a meeting with MP’s in the Grand Committee Room in the House of Commons. We would appreciate as much support as can be raised for this very worthy and necessary cause. This will be the fourth time that the group has brought their children to Parliament in order to raise the profile of this issue with the Government. I would like to invite any interested members of the PPS group to join us and increase our show of support.Should you have any questions please contact LincsPPN Member David Thompson on davidl@freewebaccess.co.uk or phone on 0207 290 1510 (Office Hours)

Reflections by Christine Ayre

 

<catley@tesco.net>

 

Life these days is lived at such a fast pace, people don’t seem to have time to spend and enjoy the simple things. I expect I am the same, but I do now and then pause and think of a time when life was a bit slower and people had time to spend, which didn’t involve cars, mobile phones, computers and the like.

 

Only twice in my life have I had an experience of the slower pace of life, now past, which I have remembered with delight.

 

The first of these was in the late sixties when I was working for a photographer, so on Saturdays my work took me out to weddings, many of which were in the Villages surrounding Sleaford.

 

One such wedding was to take place at a Village named Irnham, near the small market town of Bourne. I was not relishing this wedding as it was a cold and snowy late December day. The Church was not one I had been to before and on arrival I was horrified to find evergreen trees laden with snow growing almost up to the Church door, a photographers nightmare.

 

We were standing outside the Church door trying to keep warm when a very nice Lady, who was I think doing a bit of dusting, came out and invited us in, saying “there is a good fire in here, come in and get warm”. Going in that Church was like stepping back in time, it was a small place with white washed walls, a large pot bellie stove in the centre, which was giving off a wonderful heat. I wandered around looking at the beautiful stone carving and wonder of wonders a tomb with a brass knight on the top. All the time the cleaning Lady was talking, telling of the death of the Squire from the manor, who had passed away only a few weeks previously and how much he was missed in the Village and how he was related to the Knight on the tomb. The Village people were all waiting for the new young Squire to move into the manor from London.

 

I thought at the time, I will always remember this day and this Village, where time seemed to have stood still, the like of which I was sure, I would never see again.

 

How wrong I was, last week I had a similar experience and again one I will always remember. I had arranged to go with my sister in law to a talk, the subject being Queen Elizabeth the first. The

 

talk was to be given by someone from Oxford University, so well worth the trip.

 

I had about ten miles to drive to the Village of Little Hale, the talk was to take place in the local Chapel. The afternoon was beautiful with the sun shining and the birds singing.

 

We drove along a narrow road, through a patchwork of fields, some so bright with the flowering rape, others more restful to the eyes, with the soft green of the wheat. We passed meadows starred with daises and buttercups, and hedgerows heavy with the scent and blossom of the hawthorn. A perfect English Summer day.

 

The Chapel was easy to find and proved to be a small building joined onto a house. The date on the Chapel was 1839, but the building seemed to be older, brick built, of a soft rosy red colour, the windows high, made to let in the light and not for looking out of, nothing to tempt the eyes away from the pulpit.

 

Imagine the children in days gone by, sitting in the pews, with fire, brimstone and threat of eternal damnation raining down on their heads. How they must have wriggled and squirmed longing to be released from this prison.

 

On this Summer day all that is past and the Chapel is a place of delight.

 

One small room with about five pews on each side, a pulpit at the end and a small old fashioned ornate organ at the side by the door. A floral carpet covered most of the dusty old floorboards, vases of lilac and wild flowers stood around and arrangements of leaves adorned the high windowsills.

 

The door stood open and the sun flooded in. We were the first to arrive, so sat in a pew at the front and contemplated the organ, flowers, pulpit and the china teacups with the Chapel crest in green and the words Little Hale Chapel 1939, these must have been made for the Chapel Centenary. I wonder who thought of buying the teaset and how fitting for a Chapel, how many cups of tea had been drunk from them over the years.

 

We drank our tea and ate the home made biscuits, the speaker climbed into the pulpit and as if imbued with the spirit of a long gone preacher, delivered his talk with much fire and quite a bit of pulpit thumping.

 

As I watched the reflections from the blue glass above the door move across the carpet, I found my mind starting to wander. I imagined a Winter evening long ago when the Chapel was young, the congregation glad to be in the warmth given off by the stove in the centre of the room, the oil lamp giving off a mellow glow and the preacher maybe wearing a black tail coat and flat crowned hat, visiting the Chapel to give them their Sunday ration of fire and brimstone.

 

No cars, radios or jet planes to intrude on the peace, just the voice of the preacher and the singing of hymns.

 

Little Hale still retains its quiet, slow pace of life, I hope it stays that way.

 

I have never been back to Irnham Church, thinking to see it again would lose the magic, But I will be revisiting the Chapel next month, this time its a talk on the black death. Will it be such an inspiring visit? Will my imagination be stirred again? Time will tell, but I hope so and I may be able to get another story from the visit.

 

An © Email on the SJU Polio List.ME AND MY SEVEN DWARVESAchey, Sore, Pooped,

 

Paralyzed, Fatso, Drugged and Smelly,have not been posting much of late. Too busy keeping each other company. Can’t wait for them to pack up and leave. Unwanted house company!Marsha in Texas <marsha@ccms.net>

Media Events

 

BBC Radio Lincolnshire, 12th May 2000

 

Dave Bussey (pictured left) presents the daily Action Line program live on BBC Radio Lincolnshire. In the edition of the program broadcast on the morning of 12th May 2000, he discussed various aspects of Post-Polio with Hilary Hallam, Hon. Secretary of the Lincolnshire Post-Polio Network. We intend to provide a full transcript of the broadcast within a week or so. In the meantime we are able to provide a limited access RealAudio stream recording of the broadcast. The recording is unedited apart from the deletion of music segments for reasons of copyright. We are grateful to Dave Bussey for

 

supplying us with a high quality copy of the discussion produced from the program master tape. IMPORTANT! Our current trial RealMedia server will only allow two concurrent streams of the file below. If the service is busy please try again later.

 

BBC Radio Lincolnshire 12th May 2000

 

19m 18.5sec Surestream 28K/56K

 

BBC Radio Lincolnshire

 

http://www.bbc.co.uk/england/radiolincolnshire/

 

BBC Radio Lincolnshire Presenter – Dave Bussey

 

http://www.bbc.co.uk/england/radiolincolnshire/pres_bussey.sht ml

 

1. A Résumé of Polio and Post-Polio compiled by Hilary Hallam. LincPIN Volume 2 – Issue No. 3 – February 1999.

 

2. Personal Assessment of Your Activity Levels. by Hilary Hallam. LincPIN Volume 2 – Issue No. 4 – April 1999.

 

3. Post-Polio Syndrome – From learning it exists through to better

 

managing your life by Hilary Hallam. LincPIN Volume 2 – Issue No. 9 – February 2000.

 

4. LincsPPN World-Wide Conference and Seminar Diary – Eighth

 

International Post-Polio & Independent Living Conference – Conference

 

Card #0006.

 

Lincolnshire Echo, 5th May 2000

 

Sufferer invited to USA

 

Victim to speak at seminar

 

A LINCOLN woman who has been experiencing the late effects of polio for more than 12 years has been invited to speak at a medical conference about the condition in the United States.

 

Hilary Hallam (53), who has post-polio syndrome, will be one of three British speakers at the Post Polio and Independent Living Conference in Missouri.

 

Like thousands of people across the country, she contracted polio during the 1940’s before vaccines virtually eliminated it in the late 1950s.

 

Founder and secretary of the Lincolnshire Post-Polio Network – an information service – Mrs. Hallam will be addressing medical professionals and polio survivors about self-assessment of the condition.

 

“Due to the invention of the vaccine it has been thought polio was a disease of the past,” said Mrs. Hallam, who lives in Doddington Park.

 

“When polio survivors find themselves confronted by this unexpected stage of their childhood polio they experience initial horror.

 

“They find there is an even bigger battle to be fought – finding specialised clinical support.”

 

She said by keeping an adequate diary of symptoms and functional changes, among other things, it would help doctors recognise the condition and treat it accordingly.

 

Peter Jay (54), who lives in Sutton Bridge and is a voluntary welfare visitor for the British Polio Fellowship, will be speaking at the conference for the second time.

 

He will be discussing the importance of self-management for people with long-term conditions. “This is the most important conference for discussing issues regarding people who have survived polio and I am honoured to attend,” he said.

 

“The conference is a good opportunity to discuss these issues and hopefully get polio treatment clinics in Britain.”

 

The conference takes place from Thursday, June 8, to Saturday, June 10.

 

Lincolnshire Health Authority have donated £100 towards the trip, but Mrs. Hallam is still in need of further funding.

 

She especially requires a second-hand lap-top computer which makes it easier for her to transport

 

information about the charity.

 

If you can help or for more information telephone Hilary Hallam at the Lincolnshire Post-Polio Network on (01522) 888601.

 

Copyright © Lincolnshire Echo 2000

 

The full text of this article can also be found on the Lincolnshire Echo web site at http://www.thisislincolnshire.co.uk/scripts/edarchdisplay.asp? section=Local+news&ID=4653&source=LINC.

 

Currently Unavailable

 

LincsPPN Editorial Note: In conversations with the Lincolnshire Echo before the above article was published, they were specifically asked by us not to use certain terms including “victim”. In our experience of previous newspaper articles, use of such terms can ‘switch people off’ with the result that those in desperate need of more information may fail to make further contact.

 

1. LincsPPN World-Wide Conference and Seminar Diary – Eighth

 

International Post-Polio & Independent Living Conference – Conference

 

Card #0006.

 

2. LincsPPN Directory – International/National/Local Support

 

Organizations – The British Polio Fellowship.

 

3. The Lincolnshire Echo – this is Lincolnshire

 

http://www.thisislincolnshire.co.uk/ External Link.

 

Lincolnshire Post-Polio Library

 

Articles added since last newsletter with grateful thanks to the authors

 

Title: Dr. Henry writes about “Christina’s World” Author(s): Henry Holland MD

 

Original Publication: Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, April/May 2000 issue.

 

Abstract/Extract: In David McCullough’s Truman there is a recounting of the events that occurred in 1948 during the election campaign between Harry

 

Truman and Thomas Dewey. One paragraph in the biography reads, “It was the year, too, of Christina’s World, a haunting portrait by Andrew Wyeth of a crippled woman and a forsaken house on a bleak New England hill…that would become one of the most popular paintings ever done by an American.”

 

Sent in by Lili <tweety7777@WEBTV.NET> Author Unknown.

 

I have just been through the annual pilgrimage of torture and humiliation known as buying a bathing suit.

 

When was a child in the 1940s, the bathing suit for a woman with a mature figure was designed for a woman with a mature figure: boned, trussed, and reinforced, not so much sewn as engineered. They were built to hold back and uplift, and they did a darn good job. Todays stretch fabrics are designed for the prepubescent girl with a figure chipped from marble. The mature woman has a

 

choice – she can either front up at the maternity department and try on a floral suit with a skirt, coming away looking like a hippopotamus escaped from Disney’s Fantasia, or she can wander around every run-of-the-mill department store trying to make a sensible choice from what amounts to a designer range of FLEXIBLE rubber bands. What choice did I have?

 

I wandered around, made my sensible choice, and entered the chamber of horrors known as “The Fitting Room.” The first thing I noticed was the extraordinary tensile strength of the stretch material. The Lycra used in bathing suits was developed, I believe, by NASA to launch small rockets from a slingshot, giving the added bonus that if you manage to actually lever yourself into one, you are protected from shark attacks. The reason for this is that any shark taking a swipe at your passing midriff would immediately suffer whiplash.

 

I fought my way into the bathing suit, but as I twanged the shoulder strap into place, I gasped in horror – my bosom had disappeared. Eventually I found one cowering under my left armpit. It took a while to find the other. At last I located it flattened beside my seventh rib. The problem is that modern bathing suits have no bra cups. The mature woman is meant to wear her bosom spread across the chest like a speed bump. I realigned my speed bump and lurched toward the mirror to take a full-view assessment.

 

The suit fit all right, but unfortunately it only fit those bits of me willing to stay inside it. The rest of me oozed out rebelliously from top, bottom and sides. I looked like a lump of Play-Doh wearing undersize cling wrap. As I tried to work out where all those extra bits had come from, the prepubescent salesgirl popped her head through the curtains, ‘Oh, they are sooo YOU!’ she said, admiring the suits. I replied that I wasn’t so sure and asked what else she had to show me. I tried on a cream crinkled one that made me look like a lump of masking tape, and a floral two-piece that gave the appearance of an oversize napkin in a serviette ring. I struggled into a pair of leopard-skin bathers with ragged frill and came out looking like Tarzan’s Jane on a bad day. I tried a black number with a midriff and looked like a jellyfish in mourning. I tried on a bright pink suit with such a high-cut leg I thought I would have to wax my eyebrows to wear it.

 

Finally I found a suit that fit. A two-piece affair, with shorts-like bottoms and a halter top. It was cheap, comfortable and bulge-friendly, so I bought it. When I got home, I read the label, which said, ‘Material may become transparent in water,’ but I’m determined to wear it anyway. I just have to learn to do the breaststroke in the sand.

 

Editors note – If you would like to write something for our newsletter; an amusing tale from your polio past; problems you are having; tips that might help others; then please get in touch.

 

Last newsletter we included the article – Polio Biology X In PPS Manual Muscle Testing Problems Arise from Judgement & Biology.For presentations I have produced the following diagram to explain polio muscle fatigue.

 

The Long-Term Medical Conditions Alliance.

 

Improving Lives – Proposals for Change.

 

Calls for changes in health & social care to achieve better quality of life for people with long-term medical conditions, from the perspective and experience of the people themselves.

 

Long-term medical conditions are not yet given proper attention in the changing pattern of health and healthcare. Advancements in research and treatment and the fact that more people are living longer have made dramatic changes in their prevalence. The White Paper on Public Health ‘Saving Lives: Our Healthier Nation’, estimates that one in three of the adult population is affected, with a particular impact on older age groups. A significant number of people have more than one condition.

 

The NHS, local government, professional and voluntary bodies all contribute to meeting needs but not enough is yet done to help improve the quality of people’s lives. Greater recognition is needed of the substantial impact of illness affecting so many individuals: impact on their lives, on their families, on employers and on heath care. LMCA and its 98 (now 112) member organisations propose a broad approach across the wide range of long-term conditions and a more united approach across services in order to achieve changes that are needed.

 

Five principles should underpin a new approach.

 

• Address common issues across long-term conditions

 

• Put greater emphasis on quality of life

 

• Treat people as people, not patients

 

• Work towards greater social inclusion

 

• Use the expertise of individuals and organisations

 

LMCA proposes nine changes to achieve these objectives.

 

1. Improve equitable access to specialist services

 

2. Extend the role of nurses

 

3. Improve equality of access to the most effective treatments

 

4. Plan seamless, life-long services

 

5. Develop and offer self-management programmes, information and support

 

6. Use the knowledge of individuals in improving professional awareness

 

7. Put into practice principles of user involvement in commissioning

 

8. Invest in and use the expertise of voluntary health organisations

 

9. Ensure real government commitment to making an impact.

 

LMCA – Unit 212, 16 Baldwin Gardens, London ECIN 7RJ

 

Tel: 020 7813 3637 Fax: 020 7813 3640 Email: alliance@lmca.demon.co.uk WebSite www.lmca.demon.co.uk

 

The Long-term Conditions Alliance and National Voices merged on 17 October 2008 to

 

create one unified umbrella charity representing service users and carers in health and social

 

care policy-making nationwide. For more information see

 

http://www.nationalvoices.org.uk/ltca/page

 

Editor’s Notes – I recently attended the AGM and Members Conference of the LMCA and was able to speak with a number of people from other Support Groups. I gave information to and had a few minutes with Peter Homa, Director of Health Improvement, Commission for Health Improvement and Cliff Pryor of NSF – voted a new Trustee of the LMCA – who is working on the People’s Voice for Health Campaign. I emailed him as requested with more information.

 

In the afternoon at the Workshop – Influencing local health policy makers – I asked ‘Lincolnshire Health Authority use the National Figures for Neurological Conditions and divide them by the population of Lincolnshire, do other Health Authorities do the same? If so where do the National Figures come from? Linda Edwards Chief Executive of the National Osteoporosis Society said that they were campaigning for the statistics of wrist injuries to be broken down further so that they can pick up more information on breaks that could be from osteoporosis. Bernadette Maughan, one of this sessions speakers and Head of Consumer Relations at Nottingham Health Authority said she would take this up with her superiors.

 

LINCOLNSHIRE POST-POLIO NETWORK ANNUAL GENERAL MEETING.

 

DATE: 30th September 2000 VENUE: Ancaster Day Centre, Lincoln.

 

This Newsletter was prepared early due to the trip to America. Bookings on Saturdays at Ancaster Day Centre in Lincoln require one of the Caretakers to work overtime and due to holidays it has not been possible to confirm the date requested of 30th September 2000. If this date is not available then the date will appear above. If an alternative venue has to be picked this will also appear above. Full details including a map will appear in the next newsletter.

 

The rough format for the Saturday will be:- Annual General Meeting 10.40 followed by a break for coffee. 12.00 two talks. 1.00 we will serve a cold meat salad with roll and buffet lunch. Cost to be advised next issue. 2.00 – 3.30 two/three more talks followed by a tea break, raffle and question time. Ending at 4.30 with the building closed at 5.00p.m.

 

Each talk will be about half an hour in duration and on various subjects related to Polio and PPS with speakers confirmed next Newsletter. We anticipate covering the following subjects. Assessment and Diagnosis, Advice and Treatment available, Orthotics, Breathing and Swallowing problems and problems with getting/losing/fighting for benefits.

 

As with last year we have checked with the Holiday Inn Express and they have plenty of

 

vacancies to date on all weekends in September/October. Friday and Saturday nights will be full of fun and laughter if last year is anything to go by. A great way to share experiences of polio, PPS and the medical minefield in general. It certainly was not all doom and gloom, as many will remember the mascara ran down my cheeks! If you wish to book rooms at the Holiday Inn Express, please ring direct to 01522 698333 mentioning the Lincolnshire PostPolio Network. We will arrange a special rate as soon as the date is confirmed.

 

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177

 

UK Membership – Life Member (LM) £100 or £5 x 20 months S.O. – Member £10 a year. (All UK Memberships payable by Standing Order – Form on request) Renewal dates are the First of the Months of Feb, Apr, Jun, Aug, Oct, Dec. Please make cheques payable to ‘Lincolnshire Post-Polio Network’ European Membership – LM £125- Member £12.50 a year- Newsletters by airmail. USA/Canada Membership – LM US$250 – Member US$25 a year – Newsletters by airmail. (US$ checks to LincsPPN c/o 4212 Blanding Blvd, Jacksonville FL 32210, USA) Other Countries please contact for details.

 

All donations will be gratefully received.

 

LincPIN Newsletter – August 2000 Articles for publication by July 20th – Publication date August 5th 2000 All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840

 

info@lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network 2000 – 2010.

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue11.html> Last modification: 5th February 2010.

 

Last information content change: 26th April 2009.

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 10 – April 2000

 

This issue is Dedicated to the Memory of two Polio Survivors Mrs. Marjorie Hotham who died aged 77 on 21.3.2000.

 

Her brother Bernard Shillitoe has sent us a donation of £127 in lieu of floras in her memory and tells us that Marjorie was born in 1922 and caught polio in 1926. Despite having one paralysed arm and another weak arm and legs she married and worked for Remploy in Wakefield until she was 30. She then started to use an electric chair and in the last 20 years had to use this all the time. He remembers her mostly for her sense of humour, strong minded attitude to life and the summer evenings when they drove out to the Woolley Edge Car Park and took in the wonderful view overlooking the Pennines.

 

and Ian Dury who died aged 57 on 27.3.2000 ‘Reasons to be Cheerful’ his attitude to life and a Number One Hit in the UK for Ian Dury and the Blockheads

 

CONTENTS

 

Dedication

 

Editorial by Hilary Hallam.

 

Polio Biology X Eddie Bollenbach, M.A. Post-Polio Syndrome and Local Authority Support Dr Nick Armstrong, Solicitor, Irwin Mitchell.

 

Have I or Have I Not Got It??? Member John Richardson, Wetherby, Yorkshire. Is This PPS? and Fitters Member Sheila Crampton, Newark, Nottinghamshire.

 

Fighting all the Way Member Alec Mackinnon.

 

The APS Machine Joy Witheridge, West Sussex.

 

A Novel Approach to Breathing Mary Clare Schlesinger.

 

M.E. Jan Limback, Bourne & Spalding ME Support Group, Myalgic Encaphalitis Association.

 

Stop chasing the holy grail of medical care and take charge of your life Art Coburn – Trenton, Florida.

 

Mousemat Christine Ayre.

 

My Private War by June Millard 1.4.26 – 8.8.92 [Part 2].

 

Contact Information

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

A very busy two months with much happening and at last with the new Millennium the light at the end of the tunnel appears to be closer. Of significant importance are:

 

The Lincolnshire Post-Polio Library article Non Paralytic Polio and PPS by Marcia Falconer PhD and Eddie Bollenbach MA published in January 1999 has now been referenced in Dr. Halstead and Dr Silver’s article Non Paralytic Polio and Post-Polio Syndrome in the Special Feature of the American Journal of Physical Medicine and Rehabilitation January/February 2000. Also in this feature is another article by Marcia Falconer and Eddie Bollenbach, Late Functional Loss in Non Paralytic Polio and Richard L Bruno PhD Paralytic vs “Non Paralytic” Polio Distinction without a Difference. It is now accepted that the criteria for PPS of just paralytic polio’ is not correct. Polio is one line and as the level of damage increases the diagnostic name changes. Less than 45% damage and no weakness was clinically evident and if polio was diagnosed from a lumbar puncture/spinal tap then the diagnosis was ‘sub clinical polio’. Between 46% and 59% damage weakness was clinically evident and the diagnosis was ‘non paralytic polio’. Over 60% damage and the diagnosis was ‘paralytic polio’. Most of our body was affected but to differing degrees. The comment in articles ‘also having problems in areas not thought to have been affected’ is now explained. Remember Dr. Perry’s MMT chart for a Polio Muscle. A tested 5 is only functioning at 53 to 59%. These muscles with ‘unknown to us weakness’ had and have to work harder compensating for our known weak and weakening limbs but are weak themselves.

 

If you go back to my article in the June 99 LincPlN, pages 3 – 11, Polio Survivors need Holistic Multi-Disciplinary Assessment because the Standard Physical Assessment is not Adequate. It does not show Substitution of Muscles or test repetitive or sustaining power, reporting that Manual Muscle Testing (MMT) alone was not showing our true muscle ability. Our Latest article Polio Biology X – In PPS Manual Muscle Testing Problems Arise from Judgement and Biology by Polio Survivor Professor Eddie Bollenbach (Page 4) explains that Manual Muscle Testing tests instant strength and does not show the muscle fatigue that we are reporting.

 

It is essential that a multi-disciplinary holistic approach when assessing Polio Survivors becomes the ‘norm’ in the UK with immediate effect. Walking across an office, pulling against their effort, will not show the muscle fatigue we are reporting that sets in as we repeat or sustain our movements. We must be seen to do actions, walk the corridor, climb a flight of stairs, peel potatoes,

 

lift a saucepan of water across a room, get into and out of a chair or up off the floor, show how we wash our hair, etc. See the weird and wonderful ways we have developed to achieve tasks. We only have 10 energy tokens a day, 70 a week, we have to plan how we use them depending on what we have to do. For example, a doctors physical assessment could take 15, 20 or more energy tokens leaving nothing for the rest of the day, and less than ‘normal’ for days afterwards. Whilst we might be able to achieve a task once, it is still muscle fatiguing and takes up energy tokens and we have to decide what’s important today. We are proud people and want to achieve and not give in, but we have limited energy for each day. We need aids and assistive devices and the correct benefits to effectively manage our lives. Many of us now need to employ cleaners, gardeners and people to cook us meals; swap our mobility allowance for a vehicle with hoist or use disabled accessible taxis to get out with our electric wheelchairs or scooters. If we continually overstrain and overdo then we manage less each day, have more pain and fatigue and can deteriorate faster. So many of us have already deteriorated at an unnecessary speed due to lack of knowledge of the condition. We want to do as much as possible for ourselves for as long as possible but realise that this has to be within new and ever challenging limitations. We need the help of the medical profession and government agencies to assess us correctly and quickly, advise us and provide us with the wherewithal to effectively manage our lives. Please reduce the continual worsening of our condition due to the stress we are being put under as we struggle up the ‘Everest’ of Post Polio.

 

Dept. of Social Security and Medical Advisory Panel for the Benefits Agency. Because of the continual problems our members are having when applying for benefits we have again been in correspondence with these organisations. Problems reported to us are, not being awarded the right level of benefit and having to appeal and attend Tribunals and even appeal at Tribunal level; having benefits suddenly withdrawn for no apparent reason; and that most approved doctors who visit admit a lack of knowledge of polio and its late effects. They do not understand the way we have to live our lives juggling energy tokens to get some quality of life. Hugh Bayley MP sent us the two pages on poliomyelitis and its late effects from the Disability Handbook which he believed covered our condition adequately. As can be imagined these two pages are not up to date and contain little about the late effects of polio as we know them. We have sent in an appraisal of the document with medical references with a request for this section to be rewritten. We have just been told that the British Polio Fellowship have also requested this and they will be publishing an article on post polio syndrome in one of their future updates. We have stressed the urgency of this.

 

New Committee Members Wendy and Frank Grimmitt have been co-opted onto the Committee and we must express our thanks to them and friends for helping with the total reorganisation of the office area – new longer working surfaces, new cupboards and easily movable extra working tables.

 

Membership Fees – Details of all membership fees are on the back cover. We look forward to receiving renewal fees that are due. We are adding your renewal date to the envelope but the office renovation has delayed cross-checking this. If it’s wrong please ring. Please do not hesitate to contact us if you do not receive an expected newsletter or information requested. We endeavour to provide an excellent service but are not infallible – new systems being set up should eliminate errors. The earlier you tell us the earlier we can ensure that any error is corrected.

 

Medical Complaints – We have many calls and letters expressing dissatisfaction with assessments by doctors. Our advice has been to make an official complaint. However, on checking with members – and being honest ourselves – we have realised that when you visit doctors, ring and write and are still struggling to get your PPS symptoms addressed, that an official complaint is more stress than you are prepared to take on board. There is also the fear of being struck off that hospitals list. This leaves the hospital unaware of the level of complaints. To improve the situation we must address this both personally and as an organisation. If you would like help with this then please contact the office.

 

Charity Aid Foundation (CAF). Donations can now be made to the Lincolnshire Post-Polio Network via Charity Cards and online at www.charitycard.org. If you are an existing CAF CharityCard™ holders go to CAF ™secure online donations to the

 

Lincolnshire Post-Polio. See also www.CAFonline.org.

 

Long-Term Medical Conditions Alliance (LMCA). We have joined this umbrella organisation made up of over 110 voluntary organisations working to meet the needs of people with long-term medical conditions. LMCA works to ensure that the voices of people with long-term medical conditions are heard, valued and acted upon, and to provide effective support for its member organisations. Its strength comes from members’ commitment to work collaboratively on issues of common concern. It is distinct in that it focuses on long-term conditions for which there is generally no cure.

 

Neuroscience Forum with the Lincolnshire Health Authority (LHA) – The February meeting was another step forward with many concerns being discussed. I asked that all groups put forward their ten top gripes as I believed them to be at least 80% the same. I have already heard from Deborah Jaines (LHA) that I am right and the top two will be on the agenda for the next meeting on May 18th 2000. At this meeting the Parkinson’s representative and I are talking for 5 minutes each about our conditions. Glenys Sanders – Guillain-Barré Syndrome and Jan Limback – ME (page 14 – 15) spoke about their conditions in February.

 

GINI Conference – trip to America – I am flying into Florida and travelling by car with US member Richard Boone stopping for breaks with Polio Survivors en route. (As on earlier trips without their generosity this trip would be impossible). First stop is Trenton, Florida to meet with Art Coburn. Then to the Roosevelt Warm Springs Institute for Rehab Post Polio Clinic to meet with Dr. Anne Gawne and her PPS Clinic Team and new PPS Support Group. Via the east of Atlanta to meet US Member Nancy Vandyke and Myrna Whittington. North via Knoxville up the I75 and then west at Lexington stopping at Mount Vernon Illinois. Then to St Louis for the 8th GINI Polio and Independent Living Conference where I am doing a 12 minute summary of my presentation ‘Assessing our activities to more effrctively manage our lives’ on 8th June following the presentation by Dr. Gawne and her team. Richard and I share the whole presentation on the 10th June at the same time as Peter Jay (UK LincsPPN Member) and Welfare Visitor for the British Polio Fellowship gives his presentation on Self Management of Chronic Conditions. Sample cost before the 1st May for a polio survivor is registration $160, meal package $105, hotel rooms $119 per night. (Our speakers reduced cost is $800 (£500), registration, meals and hotel). Then South to Branson Missouri for the 2nd Internet Reunion (June 10 – 13) see page 15. This is a friendly get together (about 50 so far) with a Conference Room available for getting together. Craft made by Polio Survivors attending will be on display and for sale. Dorothea & Michael Nudelman and Richard and I will be doing our talks again for those not able to go to GINI. A tv interview and visit to Silver Dollar City (wheelers go free) has been arranged. South via Mobile Alabama to meet Charles Gollot (US Member) and his PPS Group and back to the Tampa area. If time, finances and energy levels allow then we will be meeting with other Polio Survivors, PPS Specialists and PPS Groups. This trip will not be possible without sponsorship and donations and I am still waiting with trepidation for reply letters to requests. I would like to thank 5 Polio Survivors, 3 in the US, who have already given cheques totalling £240 towards the trip expenses. If you would like to contribute please write on the back of the cheque ‘Trip to America’. We do not have enough funds to support attendance at conferences.

 

Mail and the LincsPPN phone number will be diverted to other committee members whilst I am away. I will be keeping in regular contact via email.

 

Office Days. Every Wednesday and the third Saturday in a month will be Office Days starting in July. If you would like to visit then please give us a ring.

 

Polio Biology X In PPS Manual Muscle Testing Problems Arise From Judgement and Biology

 

Eddie Bollenbach

 

A Lincolnshire Post-Polio Library Publication – 18th March 2000

 

When acute polio struck it was essential to measure the extent of paralysis quickly. One of the techniques used was manual muscle testing. There isn’t too much to it really. The physician holds a hand against a patient’s limb and coaches the patient to push as hard as possible. Depending on the judgement of the tester the patient’s muscle strength is graded from 1, (Trace Strength), to 5, (Normal Strength). This assessment was very valuable because it provided a clinician with enough resolution in measurement to quickly evaluate the extent of neuromuscular paralysis from acute polio in one session.

 

From the standpoint of muscle biology these tests made sense too. During acute polio, motor nerves, and all their branches to muscle fibers, die. The muscle fibers are then unable to receive motor stimuli from the brain and spinal cord to induce voluntary movement. A manual muscle test would quickly show that many or all muscle fibers were orphaned and had no ability to do work. Appropriate therapy could then be initiated.

 

The biology of Post-Polio Syndrome is distinct from that of acute polio. In PPS end fibers of motor nerves begin to lose function. This is a slow process which involves fatigue more often than muscle incompetence. Let me explain. If a normal person is standing it is possible that 30% of the muscle fibers in his leg are contracted to maintain his upright position and posture. When those 30% get tired they automatically rest (switch off) — isn’t the human body an ingenious creation? — and another different 30% of fibers contract to allow the first group to recoup. This can go on for hours. Someone with PPS may have only 40% of his original muscle fibers. When he or she stands they have only 10% in reserve, so in a short while there are no substitutes to take the load off. The result is fatigue of contracting muscles.

 

In the case described above what would show on manual muscle testing? On contraction against a clinician’s hand strength may show normal (5). But this is instant strength, which is what manual muscle testing measures. Many people with PPS are not down in the (1) trace range, especially if they recovered well from their acute polio. They are in the 5,4,3, and 2 ranges. Dr. Sharrard in 1953[1] found that in order to identify any weakness, by this kind of testing, more than half the anterior horn cells had to have been destroyed during the original polio infection.

 

Other clinicians have also demonstrated the problems with manual muscle testing in grading PPS involvement.[2,3]

 

The biology of PPS explains the problem. What we should be looking for is fatigue in previously involved muscles, or less frequently in uninvolved muscles. Manual muscle testing just doesn’t do that. The PPS health professional should be clear about what is being measured by manual muscle testing. It may be, for many, that what is being measured is the original weakness and not the new loss.

 

References.

 

1. Sharrard, W. J. W.: Correlations between the changes in the spinal cord and muscular

 

paralysis in poliomyelitis. Proc. R. Soc. Lond. 40:346, 1953.

 

2. Perry, J.; Barnes, G.; and Gronley, J. K.: The postpolio syndrome. An overuse phenomenon.

 

Clin. Orthop., 233: 145-162, 1988. [Lincolnshire Library Full Text]

 

3. Grading For Manual Muscle Testing (attributed to Dr. Perry – Rancho Polio Clinic). [Polio

 

Survivors’ Page] <URL:http://www.eskimo.com/~dempt/grading.htm>

 

Eddie Bollenbach MA

 

Edward.Bollenbach@snet.net or Bollenbach@commnet.edu Academic Page: http://www.angelfire.com/mi/nccc/

 

Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available. For the complete list of Eddie’s Polio Biology articles including links to recent additions see the Polio Biology Catalogue.

 

POST-POLIO SYNDROME AND LOCAL AUTHORITY SUPPORT

 

The Lincolnshire Post Polio Network contacted me to talk about difficulties people with Post Polio Syndrome (PPS) have been having in obtaining support from their various local authorities. This short article is designed to outline local authority’s obligations and some of the steps individuals who are having problems might take to enforce them.

 

The law – The basic position is that local authorities social services departments (SSDs) – often working together with health authorities – have an obligation to assess the needs for community care services. A wide variety of things may be covered by such an assessment, including the need for accommodation, adaptations and extensions to accommodation, carers. respite care, assistance in the home and special equipment.

 

The SSD has a wide discretion as to how comprehensive a needs assessment should be but it should be tailored to the individual concerned. Medical advice will often be necessary. Carers (including other family members) should usually be consulted as well as the person being assessed.

 

There should usually be a written record of the results of the assessment, and if the authority decides to provide services then there will be a care plan which sets out what these services will be. There is detailed guidance on what care plans should contain. Look for descriptions of the service to be provided and by whom, objectives, costings, any areas of unmet need, procedures and timescales for review and complaint. It may be a fairly lengthy document depending on a person’s level of need. There should be a separate assessment included of the carers’ ability to care for the service user.

 

Once the assessment has been carried out there is some debate over the obligations of SSDs to meet the needs that have been identified. In some cases, notably services in the home for disabled people and residential accommodation, the SSD must make arrangements to meet a person’s needs. In other cases the SSD will have a wide discretion as to whether to provide a service or not (for example, people who need help simply because of their old age). In addition, in all cases once the SSD has gone a step further and decided to provide the service in question they must do so. The failure to do so, or the withdrawal of those services later on, can be challenged in the courts.

 

SSDs are not entitled to “means test” when deciding whether to provide a person with services. However, once a decision to provide the service has been taken then the SSD can charge a user for that service an amount it is reasonably practicable for the user to pay.

 

Common problems – The following are common problems that arise with SSDs, together with suggestions as to what you might do about it:

 

1. The local authority has not carried out an assessment or you do not know whether they have

 

formally done so. Request an assessment or a copy of it. So long as you are someone who

 

appears to need community care services you are entitled to be assessed .

 

2. You are being or have been assessed but the SSD does not agree you need the services. You

 

need to ensure that the widest possible assessment is carried out, and that the SSD has as

 

much favourable evidence as possible. Try to get your GP and any other medical staff helping you to produce letters. Ask carers and other witnesses to prepare statements. Put this information to the SSD and if they ignore it, ask why and what evidence they rely upon that contradicts it.

 

3. The SSD appears to be doing nothing. Failure to do anything at all, or within a reasonable time frame, is a failure to carry out statutory obligations. It may be that you need to make a social services complaint but it may also mean that you have to take legal action. At this stage, consider consulting solicitors.

 

4. You were assessed as not needing services but your needs have changed. Request a reassessment.

 

5. The SSD agrees you need services but says they have exhausted their budget, that you can pay for them yourself or that there is some other alternative source of funding. They may be entitled to do this but it depends at what stage of their decision making process they are taking financial considerations into account. Again, consider consulting solicitors.

 

6. The SSD tells you it is their policy not to provide for people with your type of disability or they do not, as matter of policy, provide a particular kind of service. Unless they are considering each individual case on its own merits this may well be unlawful and so consult solicitors.

 

7. The SSD initially agreed to provide services and began to do so but it has now been withdrawn. Whatever the reason, this may also be unlawful so consult solicitors.

 

8. You have been charged for the service but can’t afford it. You can ask for a review of the charge.

 

Dr Nick Armstrong

 

Solicitor in the Public Law Unit Irwin Mitchell Solicitors

 

St. Peters House, Hartshead, Sheffield, S1 2EL and can be contacted on (0114) 276 7777.

 

<ArmstrongN@irwinmitchell.co.uk>

 

HAVE I or HAVE I NOT GOT IT???

 

Member John Richardson, Wetherby, Yorkshire.

 

I was born on 8th June 1923 (77 years ago), I was a relatively healthy child, although I did seem to have childhood ailments worse than my siblings. At the age of seven I suddenly found one day that when playing a game indoors I could not get my breath, I was diagnosed as being asthmatic but I still managed to live a reasonably normal life. My mother was a great believer in “old wives remedies”. I had to sleep on a flock pillow with my head to the north and I had to have the first interior sprung mattress in our house. She even sent me off to boarding school with an amber necklace round my neck (this lasted until my first bedtime). I was pretty healthy at school except for blinding hay fever in the summer and excema in the winter that prevented me from holding a pen.

 

I left school at the outbreak of war and at eighteen joined the army (Medically A1). I had a very active service career during which I took an engineering degree. Towards the end in ’47 I did have a recurrence of asthma and had to have adrenalin injections in order to do half a days work as messing officer. I was discharged in late ’47 still A1.

 

Having fallen in love with my wife to be and finding myself out of a job I obtained work as a lorry driver for an ex-girlfriends father. During the next three years I learnt the cabinet making trade and also studied interior decor by helping a first class designer in his late sixties.

 

One day he said to me “It is high time you started on your own”. We found a local shop, which we

 

bought, and worked night and day to get the business started in the spring of 1950 and at the end of that year we got married.

 

Life was pretty hard in a small maisonette and harder still when our first son arrived in ’52 so my wife could not help in the business.

 

Our second son was born in 1954. He was inoculated against POLIO we think in late ’57 and was very poorly indeed. That year we had managed to have our first real holiday with my parents who lived in the midlands. David was off colour all through our stay. On our return home on the Sunday, after a long drive, I did the usual chores, cutting lawns etc. On Monday morning when we awoke I said to my wife “I do not feel like going to work I can not lift my head off the pillow”. Her answer was that she felt the same but we had a living to earn, no sympathy! However I could not get out of bed, it was then decided to call the doctor. He came twice within a few hours and on his second visit announced that the ambulance was on its way. I arrived at Seacroft Hospital in the late afternoon and had to have a lumbar puncture before being admitted to the POLIO ward.

 

My brother a G.P., came to see me and brought me an opinion from his best friend, who was John Fitton, the Orthopaedic specialist at Pinderfields. Their theory was that if the muscles were not stretched whilst infected they would not be harmed. I literally did not move for three weeks and although I was told several times that it was doubtful if I would walk again I insisted that I should leave the hospital on my own legs.

 

I was eventually transferred to Pinderfields and as John Fitton was on sabbatical I came under the control of Mr. Clark who was, at first very pessimistic. I eventually announced that I was going to walk to the ‘loo’ and did. I was then allowed to go home with a wheelchair.

 

I returned to my business, which had suffered badly despite the brave efforts of our staff of one lady. I found that the only way to cope was on hands and knees, but I had to get out to clients and start getting orders and after a few weeks I managed to drive and pick up threads again.

 

Although I was able to hang curtains after several weeks it was some months before I could lay a carpet single handed. However I was eventually back to normal, except if I put my back out which in our business everyone does periodically. I could lift as heavy loads as anyone and I could work a 10 or 12 hour day.

 

I was very active in the Chamber of Trade and in Rotary International when I founded the Leeds branch of the British Polio Fellowship and eventually became the Chairman. Unfortunately our Rotary Club changed to an evening club which was the same night as the Polios which made attendance at both impossible.

 

I was fully active in all walks of life. I tripled the size of our shop, doing all my own shop fitting. I continued to hang curtains and lay carpets until I had two operations for ulcers in one year. I walked and swam as often as I had time and I did exercises every morning.

 

I retired when I was sixty and handed the business over to the two boys, although I did help with the books for some time. I still had a very active retirement because we had a large garden and I did all our home maintenance. I then became very involved with The William Merritt Disabled Living Centre and got the job of ‘publicity’. I would go all over the north giving slide shows telling people what we do.

 

Seven years ago we moved to a lovely flat on the banks of the river Wharfe in Wetherby so I then took up Crown Green Bowls. I became besotted and played nearly every day and several evenings, also took over the maintenance of the surrounds, fences and pavilion so I was never idle.

 

Then in May 1999 I started with an aggravating ache in my right leg on the outside of my calf muscle just below the knee. I took very little notice, at 76 I was lucky to have nothing worse, but as the season wore on I found that it was getting worse and was spreading up my leg. Every time I put my weight on it the pain went up my thigh. I can not say that it is agony all the time but it is always uncomfortable. I had a session with a physio who thought it might have something to do with the

 

polio and suggested I use a stick. I now find that I need a hot wheat bag on it in bed to get some relief. I have also developed an area about the size of a half crown on the outside of my thigh which feels as if it had had all the skin grazed off but there is nothing to see.

 

At Christmas I started to be very short of breath and could hardly speak, the Doctor sent me to Harrogate Hospital for x-ray because he could not find any congestion, neither could the Dr. at Harrogate and the x-ray was clear. I was then put on Becotide which has helped my breathing.

 

SO WHAT ARE THE SYMPTOMS.

 

My right leg feels uncomfortable, at times it is very painful with stabbing ache shooting up to my hip when ever I put my weight on it. I feel that it is going to give way under me, particularly when I get out of bed or stand up but so far I have managed not to fall. I also have a raw spot on my thigh with nothing visible.

 

I still want to do all the things that I have been used to doing but I do not seem to have the energy or the inclination. I have to force myself (I do not even know if I am looking forward to the bowling season).

 

I have not slept well for several years and spend a lot of the night listening to the radio or reading. I am beginning to feel an ‘old man’ (which I suppose I am) but I have never felt so before.

 

WHAT IS THE DIAGNOSIS?

 

My doctors do not seem to believe in PPS and even my wife thinks it is all in the mind having read your newsletters.

 

What I would like to know is:

 

• Is this just a case of old age, arthritis or rheumatics that I must learn to endure,

 

• or are my troubles related in any way to having had Polio, in which case can anything be

 

done to help me improve the quality of my life?

 

WHAT IS THE ANSWER – WHO DO I CONSULT?

 

IS THIS PPS? and FITTERS

 

Member Sheila Crampton, Newark, Nottinghamshire.

 

I started having new pains and more discomfort from the polio damage I had as an infant. I had mentioned it to my GP on a number of occasions; however he made nothing of it. It was affecting me quite a lot, I was having a lot of pain especially at night. I saw another GP and I explained to her about the pains I was having and I would like to see an Orthopaedic consultant to see what was happening. She said to me ‘What do you say if we had your whole body x-rayed.’ I said ‘Yes, I would agree to that.’ Thinking she was going to get to the bottom of my new pains. I was also in need of a new caliper so I asked her if she would get me changed to a Grantham fitter because where I was registered they were closing down which was Harlow Wood Orthopaedic Hospital. She said she would write and get me an appointment.

 

My Orthopaedic appointment came but there was quite a long wait. So after a while I rang Grantham hospital to see if they had a cancellation. I was given an earlier appointment which I gratefully accepted. When I saw the consultant he hadn’t any information about the new pains and told me ‘your GP has only asked for you to have a new caliper made and change to the Grantham fitter.’ He hadn’t got my history notes which were at Newark Hospital. He was arrogant. I have never heard anyone so rude.

 

I went and saw my GP telling her that the consultant she had sent me to hadn’t got my notes from Newark hospital and was very rude to me. She told me they don’t have to have them. I told her he

 

said he only had a request for a new caliper. She made nothing of it. I wasn’t very pleased with what had happened to me so I asked to see a private Orthopaedic consultant and pay for it. My GP made the arrangement and I saw another consultant whose secretary told me over the phone that he had said it was important he had my history notes as well as my GP’s letter.

 

He examined me but told me there was nothing they could do. He did say he would have liked an xray of my spine but I wasn’t sure how much would run up his bill so did not agree to it at this time. The consultant sent my GP a letter. I have a copy of this, so I know they do and did know of my detailed handicap. My GP was on holiday so I asked the other partner GP if I could have an x-ray on my back, as the consultant had requested, but the GP said ‘No the NHS does not pay for information.’ So asked how much it would cost if I paid privately and he rang the x-ray department and they said £30. I said, ‘I will pay that can you arrange it for me?’ but he then said ‘Wait till my partner gets back off holiday and she will let you have one on the NHS.’

 

I was x-rayed and shown them – all three – and I arranged for the consultant to see them, but he said there was nothing he could do, but it was interesting viewing and that’s where my question ‘Is it PPS?’ has stopped. It seems very unfair that a person who has lived with a disability from childhood and has made a success of her life should have her new problems dismissed. I think that the NHS should tell GP’s that when Polio Survivors have new problems they must be sent to someone who does understand Polio and its late effects and tell them who the specialists are?

 

I move on to Fitters.

 

Through my experiences I have noticed that there is a need that Fitter’s should all have medical knowledge about different conditions because every disability varies.

 

Many years ago I had to be referred back to see a consultant because the knee bend caliper that had been ordered for me wasn’t any good for my type of disability. It was a registrar that I saw. My caliper was stood up against the wall. I was not asked why I said it was unsuitable, he just told me in a very cocky manner that I was ungrateful. At that time I did not know what to do.

 

Therefore I went years without a knee bend caliper. Then one day I sat thinking about the confusions I had been through with fitters. I decided to write and tell my saga to Harlow Wood Orthopaedic Hospital. They wrote back and told me I could get fitted by them.

 

I kept the appointment and I went to great length to explain the type of knee bend caliper that would be right for me. The fitter took my measurements. I could tell he hadn’t taken any notice at all of what I had said to him. He said ‘We are trying to get patients out of ring top callipers because they are very painful.’ I saw another fitter when I went back and he proudly carried my new knee bend caliper and said ‘We have had a long talk about you.’ My heart sank. I knew it wouldn’t be any good for me, but he insisted that I put it on. He asked me to stand up. It did not support my hip, but he insisted that I would get used to it and that I should take it home. He even forced me to sign for it. I was so mixed up I signed. I was afraid of trouble.

 

During the following week I rang the firm where the caliper had been made and explained the problems I was having. They told me to take it back a week later which I did, and I took with me a drawing of the sort of caliper I needed. I also pointed out that I need a very lightweight caliper because of my small height and weight. I noted:

 

• The corset top knee bend caliper has no support for a damaged hip.

 

• The ring top knee bend caliper with a calf bar obstructs a person putting on their shoes. This

 

is even more difficult if you are wearing a raise shoe like I do. You have to put your leg

 

through the ring first and which ever way the shoe is put on the calf bar obstructs this

 

procedure.

 

I got the design I asked for but had to sign to say that I would be responsible for it. These inconveniences would not happen if we had medically trained fitters and they were given medical information on each patients needs. In fairness to fitters it must be as frustrating for them

 

sometimes.

 

Surgical shoes are another pain. Shoe fitters should be surgical shoe fitters not someone from off the shop floor of a factory. They should also understand balance. I have experienced different heights in the raise shoe I have to wear, and when it’s wrong I fall. I had to find my own surgical shoe fitter. Why do WE have to search for people who will do the job properly?

 

Editor’s Note – Personally I have had four AFO’s given me by Lincoln Hospital, one ‘off the peg’ and three ‘made to measure’. The ‘off the peg’ version idea was right but I had terrible pain under the ball of my foot and asked for one to be made to measure. Number 2 was cut off behind the ball of my foot because I had complained of pain but this split the skin open when walked and it was at least two inches too large round my calf and therefore totally unsuitable. [I then had one made in Canada in three hours that fitted beautifully and 95% of my problems of swelling and pain went, and I could now walk better and drive longer.] In December 1999 I was fitted on my left leg with the Utx Swing from Ambroise UK Limited and I asked about a new AFO for my right leg so that I was covered on my records in this country. Number 3 was cast but the inside was flat and my heel slid up and down in it. There was no recess for the big toe joint like the one I was wearing – and although the Orthotist tried to alter it with a hair dryer – it was not suitable, so he cast me again. Number 4 arrived and had six things wrong with it. It was two inches longer than my foot!! The underneath was shaped correctly but not the back of the heel, the sides were at least an inch too high, when I stood up in it the sides splayed open, it was cast at 95 degrees allowing my knee to hyperextend, instead of the 85 degrees I had asked for having had that explained to me by the Canadian Orthotist; I had asked for it to be 2″ higher but it was at least 4″ higher and cut into the back of my knee and the strap was at least 3″ too short. It was agreed that I should go to where they are made, but I have heard nothing.

 

Shoes – Another member simply wants flat soled inside and out soft flexible leather tie up shoes. She purchased these for many years from Marks & Spencers but their new version has a slight heel and she cannot wear a shoe like this. She visited the Orthotist at her hospital and explained fully what she needs and why, but has been given shoes that are too rigid and told to try them for a month. She cannot wear them even in the house and so has to go back again. [The LincsPPN made contact with a specialist shoe company but was horrified to be told that the price of specially made shoes is in the region of £400 and that does not compare with the £25 from M & S.]

 

Tell us your story – good as well as bad.

 

Utx swing from Ambroise UK Limited – More and more members are being fitted with this and the reports coming back are that there is a huge difference in walking and standing ability. Consultants and Orthotists are also reported to be surprised at the difference it is making. Please note that their offices have moved and the contact details are now:

 

October 2005 Update. Ken Spooner and Ambroise UK Ltd are no longer the UK contact. The UK supplier for UTX is RSLSteeper and their web site has full details of the UTX. According to their web site “for information on our range of orthotic services and products, please contact Mark Tomlinson on 0113 2070435 or email mark.tomlinson@rslsteeper.com“. The Dutch manufacturer’s web site can be found here (primarily Dutch language).

 

1. Update on members using Ambroise UK Limited orthoses. [LincPIN

 

Volume 2 – Issue No. 9 – February 2000]

 

2. Have you heard about the revolutionary new callipers now available in

 

the UK? [LincPIN Volume 2 – Issue No. 8 – December 1999]

 

3. Len’s Story. [LincPIN Volume 2 – Issue No. 8 – December 1999]

 

Easter Traditions Hot Cross Buns.At the feast of Easter, the Saxon fertility Goddess, an ox was sacrificed. The ox’s horns became a symbol for the feast. They were carved into the ritual bread. Thus originated “Hot cross buns”. The word “buns” is derived from the Saxon word “boun” which means “sacred ox.” Later, the symbol of a symmetrical cross was used to decorate the buns; the cross represents the moon, the heavenly body associated with the Goddess and its four quarters.Easter Rabbit and Eggs.The symbols of the Norse Goddess Ostara were the hare and the egg. Both represented fertility. From these, we have inherited the customs and symbols of the Easter egg and Easter rabbit. Eggs were sacred to many ancient civilizations and formed an integral part of religious ceremonies in Egypt and the Orient. Dyed eggs were hung in Egyptian temples.Easter Sunrise Service.This custom can be traced back to the ancient Pagan custom of well-coming the sun God at the vernal equinox when daytime is about to exceed the length of the night time. It was a time to celebrate the return of life and reproduction to animal and plant life as well.When is Easter?Easter Sunday falls on the first Sunday after the first full moon after March 20, the nominal date of the Spring Equinox. Easter Sunday can fall on any date from March 22 to April 25 The year-toyear sequences are so complicated that it takes 5.7 million years to repeat.Rick Martinek from Milwaukee, Wisconsin Home http://home.earthlink.net/~polioinfo/Currently UnavailableHome page revised on: 4/2/00

Fighting all the Way

 

Member Alec Mackinnon.

 

Christine Mackinnon is £17.00 week better off and that is official. On Friday 3rd September 1999 the Disability Appeals Tribunal struck a blow for justice and overturned a previous decision by the DSS to reduce her Disability Living Allowance to the middle rate for care. Under the now disgraced Benefits Integrity Project, which even the Social Security Minister Andrew Darling branded as unfair and unworkable, Christine had been Bipped, to coin a new verb. (My dictionary, incidentally, defines the word integrity as “adherence to moral principles”, but of course the one thing that this current government would not recognise, if it came up and peed on its collective leg, is adherence to moral principles.) However, I digress.

 

The whole sorry saga of Christine’s Bipping, began in 1998 with a very polite letter asking her if

 

she would allow a visitor to call on her to make sure that she was receiving all the DLA she was entitled to. A little strange, since she was already on the higher rate care component and the highest rate mobility component, which had been granted to her for life in 1987. Christine decided to see this visitor. Well, actually, she read the veiled threat to the effect that if she did not her money would be stopped anyway.

 

A polite woman arrived on the doorstep and was invited in and plied with tea and pleasantries. She asked her apparently innocuous questions, such as how many times Christine went to the loo and how she turned over in bed and other minor details designed to make the disabled person feel like a freak, logged the answers and asked Christine to sign the form. Off she went, rejoicing no doubt in the knowledge that she had probably earned her money that day, having been able to claw back a few miserable pounds from another disabled person who tried to answer her questions honestly. After all, if this visitor called on 100 disabled people per month and snatched back £17.00 per week from just half of them it would save the DSS around £44,200 per annum. Nice work if you can get it.

 

Christine thought no more of it, until about five months later she was notified that a doctor would be visiting to interview her on behalf of the DLA office. Strangely enough, the alarm bells didn’t ring; she invited him in and answered all his questions honestly and off he went. A month later the letter asking for the return of her book arrived and she was told her benefit was to be reduced by £17.00 a week. The injury which was added to the insult was that they said that she would have to refund the overpayment since the re-assessment had been made, about four weeks.

 

A review was asked for and undertaken by the adjudication officer, but the decision was not changed and then a second review was asked for and that didn’t change anything either, surprise, surprise. The only course left open to Christine was an appeal to a Disability Appeals Tribunal and with that in mind, she sent for the file on the case. If it hadn’t been so serious, it would have been laughable.

 

Basically, the decision was that because Christine was able to take tablets in the night without assistance and could turn over in bed by the use of a monkey pole and satin underwear and by virtue of the fact that she was independent in her toiletting needs at night she was only entitled to the middle rate care component of Disability Living Allowance. Of course, how she could be independent in her toiletting needs at night when she is wheelchair bound and needs assistance into and out of her wheelchair escaped her, too. The satin underwear thing came about as the result of her trying to inject a little levity into the proceedings at the first interview. The visitor asked how Christine managed to turn over in bed and something along the lines of it not being too difficult “when I wear my slippery knickers” was said. The DSS has now got a note somewhere in its files about “specialised underwear for night-times”. That should get someone scanning the catalogues of disability aids!

 

The day arrived for the Tribunal and Christine attended. One of the bones of contention between the DSS and Christine was that the report indicated that she only ever visited the toilet once a night, whereas Christine maintained that that was not so, since pain killers, of which she takes about 8 a day, dry her up and she drinks more and when one drinks more one goes to the loo more and so on and so forth… the old vicious circle of drug taking. The chair of the Tribunal asked at one point whether Christine had seen her doctor to get some more drugs to dry her up so that she did not need to go to the loo quite so often. A crass and ill-informed question to say the least and Christine more or less said so.

 

Well, Christine won her fight, but she should never have been put into that situation in the first place just because she is disabled. Her message to all the disabled people out there who may be targeted by this Government in an attempt to cut their benefits, no matter what they call the next round of intrusions, is simple. “If they say they are reviewing your benefits,” says Christine, “seek legal advice or assistance from one of the disability rights organisations at once, preferably before you fill in any forms or see any visitor. If they cut your benefits anyway, appeal as far as you can

 

go. It isn’t our fault we are disabled and we should not be treated like spongers or second-class citizens. Fight them all the way.”

 

Alec & Christine Mackinnon

 

<earthborne@CABLEINET.CO.UK>

 

The APS Machine

 

Joy Witheridge, West Sussex.

 

I first read about the APS (Action Potential Simulation) Therapy in Autumn 1999 in the Daily Mail which gained my interest, and sent the cutting to Anthony Warren for his advice He was a Veterinary Surgeon and later went into Scientific Research after contracting polio. He did say that he did not know if the therapy could help the late effects of polio, but it maybe will help with inflammatory and circulatory damage. I did nothing further about it. [Sadly Anthony died earlier this year with his problems mostly unaddressed. I miss my polio penfriend.]

 

Some months later, December 1999, I heard the machine mentioned at the Hydrotherapy Pool by Mrs. Anthea Frank, the Chairlady of the local Osteoporosis Group. She spoke very highly of the machines capabilities to which I listened with interest. I asked her for more information and she gave me photocopies of the description of the Action Potential Simulation Therapy device. Anthea says ‘I no longer have to take the cocktail of drugs and I take the machine wherever I go.’

 

Feeling that this machine might assist me in my plight with the deteriorating physical condition of my upper body, relieving aches, pain and stress, I contacted the Company requesting a free demonstration. It was explained to me that the machine would not cure the late effects of the polio but it could help with some of my symptoms. It has been primarily developed for use in pain management and is used in 38 countries.

 

I received the machine in February 2000 for a trial period. I was fully assessed as to where my problems were and a treatment plan was written out for me and they arrange follow up sessions to see how you are getting on and to modify the areas. This covers on a rolling plan the areas of my body where I am having the most problems, with 8 or 16 minute sessions (totalling 24 minutes a day) depending on the plan. To date I have experienced pain and stress relief in my upper body, and reduced my intake of antiinflammatory drugs and pain killers.

 

In conclusion I feel that I want to do more but I have learned a great deal from being a member of the Lincolnshire Post-Polio Network. I know from trial and error that to overdo on a good day causes problems for many days afterwards. Caution therefore prevails and I keep within my worked out limitations. The APS device does not in my experience lift one out of the quagmire of the ‘PostPolio Syndrome’ but has certainly helped reduce my pain levels and drug intake and I ‘feel better’ in myself and that has to be a plus.

 

Editor’s note. I contacted the company – AMC Limited the sole UK distributors <http://www.apstherapy.net> – for more information and have been visited twice by the Regional Manager Colin

 

It has been demonstrated in a number of published clinical trials, that APS Therapy is successful in the reduction of pain and inflammation. This is due to the decrease in Beta-endorphin and incrase in both Leucine Enkephalin and Melatonin secretion due to the APS device.

 

APS Therapy will decrease swelling and increase flexion and mobility due to improved circulation (Thermography). This increases the rate of antibodies, enzymes, neurotransmitters and hormones to the treated area, which will increase the rate of

 

removal of metabolic wastes from the treated areas.

 

This research indicates that chronic disease often requires protracted treatment management. Therefore, with correct use over a period of time (this period varies depending on the individuals personal state of health) real benefits and improvments can be maintained.

 

I was given a demonstration on the machine and it is not unpleasant to use – a sort of tingling feeling – and the time goes very quickly. I have provided them with some medical articles and their medical team have downloaded more from our site and others. The company have offered four of our members – all with very different levels of pain – a six week trial of this machine which their medical team will monitor closely. The results of this will be used to arrange further extensive hospital based trials on Polio Survivors. We will put an initial report in the next newsletter.

 

Colin Pearce can be contacted on his home business phone/ansaphone 01763 263305 or mobile 0378 769051.

 

N.B. As with any medical or holistic treatment, advice, drugs, aids and equipment etc, that Polio Survivors are being offered or undertaken, what works for one may not necessarily work for another and everything should be discussed with your primary care physician prior to starting it.

 

A Novel Approach to Breathing

 

Mary Clare Schlesinger.

 

This is a story about the essence of my life: polio, breathing, and the medical care that gave me some of the “best breathing years” of my life. Three months before the birth of my daughter, I had the opportunity to meet Dr. Kenneth Moser (1929-1997), and reaped the benefits of his excellent medical expertise along with the benefits of a lasting relationship. Dr. Moser was the founding director of the University of California San Diego (UCSD) Department of Medicine’s Pulmonary and Critical Care Division. Dr. William R. Auger described Dr. Moser as “always very good at pinpointing what is novel about pulmonary disease and pulmonary medicine and getting people to develop novel approaches in care that you just don’t see elsewhere.”

 

Polio found its way to me in 1952 when I was three years old in the small town of Sylvania, Ohio where I lived with my loving parents, my sister and five brothers. An ambulance rushed me to Toledo Hospital on the day that my legs refused to walk. I was in an iron lung for a while then transferred to Children’s Hospital where I stayed for four months. My left side was permanently damaged and weakened by polio. In an effort to correct scoliosis, Dr. Fred Hawkins performed a spinal fusion when I was 13 years. The surgery left me in a full body cast for a year and then braces and a wheelchair. However, I taught myself to walk in private, without professional help. While I was away at college I noticed the first signs of shortness of breath. A doctor at the Cleveland Clinic diagnosed my condition as “anxiety” and prescribed the tranquilizer, Librium. Several years later and several episodes of bronchitis later, I found myself in West Penn Hospital in Pittsburgh, PA with oxygen tubes wrapped around my face, painful tests for blood gases and EKGs. I recovered with a strong determination to live in a climate with less extremes.

 

The temperate climate of San Diego, CA was perfect for easier breathing. My husband, Steve, and I left our families in the East and moved to the West coast to start our own family. However, at 24 I developed complications during my pregnancy and the local medical establishment shunned my condition as “too risky.” Fortunately, I met Dr. Moser who welcomed me with his expertise.

 

Unlike many doctors today, Dr. Moser was very familiar with polio. His wealth of knowledge and gentle positive attitude emanated hope. He explained the physiology of my condition with words I could understand along with words that were easy to hear. The weakened muscles on the left side of

 

my chest gave way to severe scoliosis, thereby compressing my lung and reducing its capacity. The inflexibility of my rib cage combined with my weak chest muscles only compounded my breathing difficulty. And, in order to expand my lungs, I used extra effort. In simplified terms, Dr Moser proposed a treatment plan for the best breathing possible with my limited capacity.

 

Although I don’t have asthma, Dr. Moser prescribed bronchial dilator medications when I was in my mid-20s. At the same time, I learned breathing exercises with the focus on deep, slow breaths that I continue to do 10 to 15 minutes twice a day. I also acquired an ultrasonic nebulizer (USN) that I use with a saline solution two times a day. The USN treatment is followed by postural drainage and “tapping” on four sides. Steve learned the “art of tapping” from a Respiratory Therapist. Dr. Moser explained that the purpose of the USN is to keep my lungs clean and clear of secretions to reduce the risk of infections. He explained further that the mechanics of my breathing caused more than the usual amount of bronchial secretions which are a breeding ground for bacteria. The USN thins the secretions and makes it easier to clear my lungs with my reduced ability to cough. I’m able to breathe more efficiently with the least amount of congestion. These exercises are a part of my routine twice a day. When more sophisticated bronchial inhalers came on the market, Dr. Moser added them to my daily repertoire.

 

I enjoyed 10 years of easy breathing before polio found its way to me again as Post Polio Syndrome (PPS). With the gradual onset of PPS, Dr. Moser increased or changed some of the bronchial dilator medications. He also found that some inhalers required more frequency, and new or different combinations, to make my breathing easier.

 

I became Dr. Moser’s “student” and gradually learned the intricacies of my own pulmonary function. Extensive testing revealed that I had the most difficulty breathing IN rather than exhaling. Every episode of bronchitis was treated quickly and aggressively, Fortunately, I’ve never had to use a ventilator.

 

While Dr. Kenneth Moser pioneered the surgical removal of blood clots from the lung and was a world renowned leader in pulmonary medicine, he continued to follow my condition for many years. Although he had to discontinue his private practice, I was fortunate to benefit from his expertise as his patient until 1993. Dr. Moser consulted with my doctors even when he was recovering from heart surgery and later, fighting lung cancer. He often commented to me or to his colleagues, “There’s nothing about you that follows a textbook.”

 

On several occasions I related to Dr. Moser the frustration of trying to explain polio and its aftereffects to doctors who are unfamiliar with it. I shared many stories from fellow polio survivors whose lives were unnecessarily complicated by the medical profession. I was especially appreciative of our unique relationship, as a patient and a friend, along with the rare opportunity to know a truly great man, Dr. Kenneth Moser.

 

Dr. Andrew L. Ries thoughtfully described Dr. Moser, “What set Dr. Moser apart was his concern for people… both the patients he cared for and the people he worked with.” Before Dr. Moser passed away, I was thankful for the opportunity to express my deep gratitude, “I know my life has been fuller because of you and your excellent care. I’m especially grateful to you… you made it possible for me to have the ‘best of life’.”

 

Pulmonary Medications: theophylline, albuterol, metaproterenol (inhaler), triamcinolone (inhaler), salmeterol (inhaler).

 

Mary Clare Schlesinger, San Diego, California. <sschlesinger@home.com> – DOB 1949

 

Height 4 ft. 11 in. (150 cm) – Weight 90 lbs. (41 kg) http://sandiego_polio.tripod.com

 

Editor’s Note – More and more people are contacting us and mentioning they have respiratory problems or recurrent coughs, wheezing, difficulties sleeping, waking with a headache, choking

 

when laughing etc., who are being examined and told their chests are clear – x-rays if done are clear – and it’s nothing to worry about. We would advise that you start diarying your days, record what you do, what symptoms you have and what effect it has on your pain, fatigue and functioning ability. Take this to your GP and ask if he thinks its advisable that you be referred to a PPS respiratory specialist for an assessment.

 

Forrest Gump dies and goes to Heaven. He is met at the Pearly Gate by St. Peter himself. The gates are closed, however, and Forrest approaches the gatekeeper. St. Peter says “Well, Forrest, it’s certainly good to see you. We have heard so many good things about you. I must inform you that the place is filling up fast, and we’ve been giving an entrance quiz for everyone. The tests are short, but you need to pass before you can get into Heaven.Forrest responds “It sure is good to be here, St. Peter. I was looking forward to this. Nobody ever told me about any entrance exam. Sure hope the test ain’t too hard; Life was a big enough test as it was.St. Peter goes on, “I know, Forrest, but the test is only three questions:1. What days of the week begin with the letter T?2. How many seconds are there in a year?3. What is God’s first name?”Forrest goes away to think the questions over. He returns the next day and goes up to St.. Peter to try to answer the exam questions. St. Peter waves him up and says, “Now that you have had a chance to think the questions over, tell me your answers”.Forrest says, “Well, the first one how many days of the week begin with the letter “T?” “Shucks, that one’s easy. That’d be Today and Tomorrow.”The Saint’s eyes open wide and he exclaims “Forrest! That’s not what I was thinking, but…, you do have a point though, and I guess I didn’t specify, so I will give you credit for that answer.” “How about the next one?” “How many seconds in a year?””Now that one’s harder” says Forrest, “but I thought and thought about that and I guess the only answer can be twelve.” Astounded, St. Peter says “Twelve! Twelve! Forrest, how in Heaven’s name could you come up with twelve seconds in a year?”Forest says “Aw, come on, St Peter, there’s gotta be twelve. January second, February second, March second… “”Hold it” interrupts St. Peter. “I see where you’re going with it. I guess I see your point, though that wasn’t quite what I had in mind, but I’ll give you credit for that one too. Let’s go on with the next and final question. Can you tell me God’s first name?”Forrest replied, “Andy.”When St. Peter asked how in the world he came up with the name Andy, Forrest replied, “You know, St. Peter, that song we sing in church: “Andy walks with me, Andy talks with me.”The lesson:

 

THERE IS ALWAYS ANOTHER POINT OF VIEW, and just because another person doesn’t see things the same way or understand the same way that you do, does not mean that it’s wrong. It’s just different. Not good, not bad, not right, not wrong; just different, and where would we be without our differences!Mary-Lou Whitaker, Kuma (pron. Q’na) Idaho.Mary-Lou.Whitaker@kinfolk.org

M.E.

 

Jan Limback, Bourne & Spalding ME Support Group, Myalgic Encaphalitis Association.

 

Presentation given at the Lincoinshire Neurosciences Forum on 10.2.2000

 

M.E. is a somewhat complicated illness – we don’t understand what causes it, we don’t know how to cure it and we can’t even agree on what to call it! It stands for Myalgic Encephalomyelitis, of which

 

myalgic – of the muscles enephalo – of the brain myel – of the nerves itis – inflammation

 

and its the ‘itis’ that causes the problem as there is no actual physical evidence of inflammation although the symptoms suggest it. C.F.S. (Chronic Fatigue Syndrome) and P.V.F.S. (Post-Viral Fatigue Syndrome) are currently being used, but neither term conveys either the complexity and severity of the symptoms of the degree of disability they can cause.

 

Although the Government now recognises M.E. as a disease of neurological origin, a section of the medical community still insists that the causes are psychological. Despite a clear directive from the Chief Medical Officer last year some doctors still refuse to accept that M.E. exists at all. Clearly because of this situation patient care is being adversely affected, with many being given wrong advice and/or wrong diagnosis. We wish to make it clear that M.E. is in the brain, NOT in the mind!

 

Diagnosis is not easy – there is as yet no definitive test, and all the standard tests at GP level usually come back with ‘normal’ results. The sufferer often seems inarticulate, especially in the early stages of the illness. A Government Task Force is currently working on a new set of diagnostic criteria, which hopefully will improve the situation.

 

M.E. has been around for a long time, and historical figures such as Florence Nightingale are thought to have suffered from it. It is becoming more prevalent in recent years, particularly among children. It appears mainly in temperate regions with modern standards of hygiene – Britain, Europe, North America, New Zealand and parts of Australia.

 

It can affect anyone, but after puberty it affects more women than men (a ratio of about 3:1), probably due to the hormonal difference. The main age of onset is between the ages of 20 and 40. Prognosis is very variable both in severity of symptoms and length of illness, and the way it is treated especially in the early stages can influence outcome.

 

Symptoms are many and varied, and no two sufferers ever seem to be the same! They include:-

 

• Disabling exertion-induced muscle fatigue, both immediate and delayed by hours or even

 

next day. This delayed reaction may last for days or even weeks in severe cases.

 

• Neurological problems, including loss of memory and concentration, problems with balance

 

and spatial awareness, and problems with speech, vision and hearing. The brain seems to have ‘input overload’ and is unable to interpret some of the information it receives.

 

• Periods of inability to reason, plan or think clearly, often referred to as ‘brain fog’ (but I call

 

it ‘total gumption failure’).

 

• Muscle and/or joint pain, often unresponsive to analgesics and may be very severe.

 

• Headache, often severe and long-lasting, may respond to migraine medication.

 

• Immune dysfunction. May be overactive, with frequent swollen glands, sore throat and ‘flulike’ symptoms, or underactive, with continual infections.

 

• Hormonal imbalances.

 

• Allergies and intolerances to good and environment (particularly alcohol).

 

• Digestive dysfunction, including slow movement of food through the gut (causing wind and

 

discomfort), poor absorption of nutrients, and sometimes severe pain and irritable bowel

 

symptoms. Some people attribute this to Candida infection, but it is not proven.

 

• Sleep disturbances, often sleeping too much (particularly in the early stages) or not enough,

 

or at the wrong time. Sleep is often unrefreshing and with dreams of nightmares.

 

• Inability to regulate body temperature.

 

• Night sweats, palpitations, panic attacks.

 

• Marked weight gain or loss.

 

• Mood swings, period of depression.

 

Whatever the combination of symptoms they tend to fluctuate, both during the course of the day and from one day to another. The illness often follows a fluctuating course with periods of remission followed by relapse.

 

Treatment of M.E. is also not easy, as often what helps one patient may even make another worse. The only advice that is universally applicable is to learn to listen to your own body, rest when it tells you to, and pace yourself to get a balance between resting and periods of mental and physical activity. Medications can do more harm than good, and should be introduced at the smallest possible dose. Alternative therapies can be helpful but are often costly (beware of unscrupulous practitioners).

 

Average length of illness is said to be 2-4 years, but many are ill for much longer and there is a tendency for the illness to become chronic. Approximately 25% of sufferers become very severely affected, to the extent of being bed-bound, partially paralysed (sometimes unable to swallow) and unable to tolerate light or noise. People in this state are not often seen by the medical profession. M.E. may not be life-threatening, but it is certain a life-altering and disabling condition. Editor’s note – The more we hear the symptoms of other neurological conditions the more we realise that there is a huge overlap, not only with the symptoms but also with the difficulty of getting an assessment, diagnosis, advice, treatment and management of the condition.

 

Strength ~Author unknown~We don’t always have to be strong to be strong. Sometimes our strength is expressed in being vulnerable. Sometimes we need to fall apart to regroup and stay on track. We all have days when we cannot push any harder, cannot hold back self-doubt, cannot stop focusing on fear, cannot be strong.There are days when we cannot focus on being responsible. Occasionally, we don’t want to get out of our pajamas. Sometimes we cry in front of people. We expose our tiredness, irritability, or anger. Those days are okay. They are just okay.

 

Part of taking care of ourselves means we give ourselves permission to “fall apart” when we need to. We do not need to be perpetual towers of strength. We ARE strong. We have proven that.Our strength will continue if we allow ourselves the courage to feel scared, weak, and vulnerable when we need to experience those feelings. Today, help me to know that is it okay to allow myself to be human. Help me not to feel guilty or punish myself when I need to “fall apart.”Sent in by Tommy Conrad <tlcon@WEBOUND.COM> http://homepages.msn.com/SpiritSt/tlc57/PPSersandJesus.html

2nd BRANSON POLIO SURVIVORS INTERNET REUNIONBranson, Missouri, USA. June 10 – 13th 2000 (Immediately following the GINI Conference) Staying at the Lawrence Welk Resort – Rooms $55Meet, chat and laugh with Polio Survivors – Visit Silver Dollar City – See the sights of BransonEmail Tommy <tlcon@WEBOUND.COM> for more information.

Stop chasing the holy grail of medical care and take charge of your life.

 

Do we get discouraged? Yes, we do. Are we depressed? Yes, much of the time. Are we depressing? NEVAH! “But,” you say, “I have PPS and there’s no cure, no hope and precious little help.” Are we wimps that lay down and become doormats? Maybe, but even a polio-wimp can take charge of his life. After all, most of us were Type A’s, weren’t we? So, dear friends, gird up your loins and,

 

“CHARGE!”

 

“Just as there was no cure for acute poliomyelitis, there is no cure for post-polio syndrome (PPS). The most successful treatment program for PPS is survivor and family education, which teaches the survivors the principles of, and methods for, selfmanagement of their bodies.”

 

Laura K. Smith [1]

 

Did you catch that? Smith writes that “The most successful treatment program for PPS is… selfmanagement of their bodies.” In other words, we alone are best suited for taking care of ourselves. When King Arthur’s knights quested for the Holy Grail, they did not find it. Neither will we, if we look only to the medical establishment.

 

I am writing this article NOT to be offensive, but to provoke your thinking about this debilitation, will we or nil we, that has overtaken us. So please don’t get mad at me, which won’t do any good, but DO think about this statement, which will do you some good:

 

Even though most of us may not be, nor ever have been, like the “Prodigal Son” spoken of in the Bible, we waste our substance, not on the riotous living of a wastrel, but in chasing the Holy Grail of medical care.

 

When I use the words, “our substance” above, I am taking the systemic and holistic view of what “I” am. Money is just a small part of my substance, but energy and strength are a very large part of what is “me;” and need even tighter budgeting.

 

A rut is an open-ended grave, and that’s where you and I often find ourselves: in dead-end thinking and actions, until someone or somewhat jerks us up short, and forces us to stop and think for a minute, or even three. I admit these statements below are between generalizations and hyperbole, but do think about them:

 

• We get a pain and run to the doctor, expecting a magic cure in a little bottle from the

 

drugstore.

 

• Only in the last fifty years or so has this been true. In the previous fifty centuries we ignored

 

the pain, or fixed it ourselves – there wasn’t a doctor on every street corner.

 

• Before WWII, Mommy was the family doctor when we were non-adults, but when we

 

became adults we became responsible for ourselves or developed the unenviable reputation

 

of being hypochondriac, or even a whiner.

 

• “Kiss it and make it better, Mommy,” is still heard today, and sometimes it works! But

 

Mommy had a certain amount of experience with various owee’s and knew what to do, and

 

did it.

 

• Sometimes Mommy had to think about it, perhaps even remember what Grandmama had

 

done in such a case. She had to THINK! And so do we.

 

Years ago I went to the doctor once, and told him, “Doc, it hurts when I do this (whatever “this” was).” He said, “Don’t do ‘this.’ $5 please! Next!” Now that may be a small chuckle, but the common sense of the doctor’s instruction is not. Today if I went to my doctor and said that, I’d have an MRI and a sonogram scheduled before I could blink twice, right?

 

Granted, the debilitations, aches, constant pains, frustrations, flusterations and general malaise that we polios entertain daily, are NOT funny, but I want to advance the proposition that sometimes we make them much worse by stressing out with continuous doctor visits.

 

“Now come on Docs… time you learned to doctor… listen to your patients… listen to what they say… If they say they cannot walk upstairs now but could five years ago.. something must have changed. …Rest (after the examination) and muscles will recover somewhat. Depends on how much straining you have done and how much energy level you have. We all know how we feel after a full physical by a doc/etc. Totally and utterly shattered… Takes at least one day of doing nothing to come back to anywhere near what we were before they started.”

 

Hilary Hallam [2] in an email in 1997.

 

A couple of years ago we visited my blood pressure and primary care doctor, whose clinic is connected with the University of Florida’s teaching hospital. As usual, one of the students came to me first for the preliminary examination — and I love these visits! I get to train a new doctor on the ins and outs of PPS and my other assorted problems! For some reason our appointment was in the afternoon, and therein lay the learning experience: the young lady student examined me, checked my heart – breathe this way, breathe that way, my reflexes, my throat, et al, and then she left to consult with the doctor. The two of them came in a few minutes later, and I was a basket case, almost. Even my wife, Nancy, said that I looked awful, and we all agreed then and there that I would always have an early morning appointment Lesson Number 1. The doctor and the student were very surprised at my condition, and what the simple examination had done to me, as were Nancy and I, though I should have expected it.

 

Today, any doctoral appointment, whether medical, chiropractic or masseuse, is always early to mid-morning. Anything else is simply unacceptable.

 

About twenty years ago, I wrote a letter to a doctor in the city who was recommended by a friend, and detailed my problems. I did this because my allergist wasn’t helping particularly nor was my GP, who’d been our family physician for nearly twenty-five years. The city doctor responded that he could help and we set up an appointment. I went. He examined me. He said he could NOT help; $150 please. If I’d had any sense, I would have whipped out his letter and refused to pay! I still get angry thinking of it.

 

That was the last time I went chasing the holy grail of medical care. I came to understand that since I live with myself 24 hours a day, but only occasionally see an “expert” for ten minutes or less, the primary responsibility for my well-being is mine. No one else’s. Mine! And that is the way I still work it.

 

Should we abdicate the management of our physical well-being to some “expert” whom we see for ten minutes after significant lapses in time? I do not think so, so don’t you do it! Look at the energy you’ll save to play with those precious kids! Laugh all the way to the bank with the gas money you save not going all over creation chasing this specialist and that therapist. Be happy thinking of all the stress and frustrations you’ve given the pass to. Take time to enjoy the sunset, the birds, and even the weeds in their season.

 

Art Coburn – Trenton, Florida.

 

You may freely vent your opinions of this article to me at: <artinfla@afn.org> or by writing do the LincPIN, address on back page.

 

1. Laura K. Smith, Ph.D., P.T. Consultant, The Institute for Rehabilitation and Research,

 

Houston, TX, pp 84-85, Managing Post-Polio, Lauro S. Halstead, M.D., 1998.

 

[Lincolnshire Library Book Catalogue]

 

2. Hilary Hallam, Lincolnshire Post-Polio Network –

 

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

 

All I need to know I learned from Noah’s Ark!1. Don’t miss the boat.2. Remember that we are all in the same boat.3. Plan ahead. It wasn’t raining when Noah built the Ark.4. Stay fit. When you’re 600 years old, someone may ask you to do something really big.5. Don’t listen to critics, just get on with the job that needs to be done.6. Build your future on high ground.7. For safety’s sake, travel in pairs.8. Speed isn’t always an advantage. The snails were on board with the cheetahs.9. When you’re stressed, float awhile.10.Remember, the Ark was built by amateurs, the Titanic by professionals. 11.No matter the storm, when you are with God, there’s always a rainbow waiting.sent in by Rick Martinek from Milwaukee, Wisconsin<polioinfo@EARTHLINK.NET>Home – http://home.earthlink.net/~polioinfo/Currently Unavailable

Lincolnshire Post-Polio Network Members email list.If you have an email address and wish to subscribe to this list – 46 subscribed to date – please email info@lincolnshirepostpolio.org.uk and we look forward to you joining the varied

 

discussions that take place.

Mousemat

 

Christine Ayre.

 

Things have changed for me in many ways since I have had PPS. The obvious changes many of you will also have experienced. The changes of lifestyle, maybe retirement, giving up the hobbies you once enjoyed and a general scaling down of things you have taken for granted for so much of your life. This is hard for all of us, but being polio survivors we don’t give up, instead we look for pastimes we can do well using less energy.

 

So it was with me. When I retired I planned to take up painting and reading, and with my dogs to look after and a bit of gentle weeding of the garden, I thought my days would be full enough.

 

I had reckoned without technology and never thought to be dragged into all the paraphernalia of the computer age. The nearest I had come to technology was when I bought a wheelbarrow and looked for nothing more. Catley Abbey never has been at the cutting edge of the modern age and we still look on an exciting day out as visiting the nearby village shop, to watch the bacon slicer.

 

A friend I was visiting one fateful day suggested I go with her to computer college. Oh no! I said, I’m not interested in those things: in fact I think they are more trouble than they are worth and if I had my way they would all be gathered up and dumped in the sea. “Go on” she said, “what else do you have to do? It will do you good, get you out to meet people.” I said I would try it once, to see if I liked it but, no promises.

 

I attended the college for six months before I bought my own computer, by which time I was completely hooked. I was by this time doing word processing, spreadsheets, databases and desk top publishing. It took me another few months to get on line and since then I have made many friends across the World.

 

As with any hobby there are a lot of things one has to buy, these in computer speak are known as peripherals, so since the computer took over a corner of my sitting room other little things I could not possibly live without have been appearing at regular intervals. First the computer demands its own workspace, in the form of a custom made set of shelves. The printer needed a shelf, then the scanner arrived and needed a shelf. Then came the boxes for the CD ROM’s and the floppy discs, the reams of paper, plain and photo quality, by this time I had a digital camera, then it needed a lead to plug it into the mains electricity.

 

I have spare batteries for the camera, spare internal fan for the computer, retractable keyboard brush, inks for the printer, files to hold all the paperwork I now generate. A spare lead to plug the modem into the phone socket, books on how to do things when my one brain cell overheats and goes on the blink. They all require shelves, as do the the increasing number of computer magazines which arrive at regular intervals and I dare not throw away, just in case I have a problem which one of the magazines is able to solve.

 

There is also a certain pleasurable time consuming side to the computer in the form of games, also things like the pet dogz CD ROM. where one can adopt a dog and watch it grow from puppyhood into an adult dog, fall in love with another dog and produce a puppy. The puppies are very sweet and fluffy, and one is able to interact with the dogs, play ball, scratch their backs etc. Not that I know much about that sort of childish thing of course. There is also one with cats. I don’t have that one… yet.

 

I must admit having a computer is rather like having a superior friend. Smugly reminding me when bills are due and telling me that it has changed its own clock in line with British Summer Time. Unlike me it never forgets.

 

With technology making great strides almost daily, the time will soon come when computers will not only think for themselves but also talk. I dread the day when I sit in front of my computer and it says something like, ‘nice legs, pity about the face’.

 

Well that has given you an insight into the computer situation at Catley Abbey. I’m just about to set out and drive with Ben boxer riding shotgun, to PC World, there I hope to purchase a new talking mouse mat. I saw it advertised in my computer magazine this week, it has a limited vocabulary but, just right for me, it says, “Greetings oh enlightened one-ohhhhh” and features a picture of green aliens, sounds nice. Also I fancy one of the furry monitor covers, I think one like a zebra will look nice in my room. Oh and I must look at the camera to fit on my monitor, then people I talk to on the net will be able to see me, that should put them off for life. Then I’ve seen some screensavers that look like a tank of tropical fish. There are also some slim line monitors, I’ll look at them while I’m there. If I had one of them it would free up a bit of space on the shelves, that’s tempting.

 

I did also want a Shorn the Sheep mouse pad. Maybe I’ll end up with two mouse pads. Decisions decisions.

 

Christine Ayre

 

Chairperson. Lincolnshire Post-Polio Network. A Nippy Ventilator User.

 

<catley@tesco.net>

 

My Private War

 

by June Millard 1.4.26 – 8.8.92 [Part 2 – continued from last newsletter].

 

This article was written by the late June Millard whose sister is Wendy Grimmitt, a new member from Grantham who caught polio at the same time as June and now has PPS.

 

Later that day came my promotion to the Women’s Ward. The Sister of this ward was a marvellous old lady, well over seventy, who had come from retirement to help with the nursing shortage. In the first World War her face had been badly scarred by a shell splinter while nursing behind the lines. She was very gentle and sympathetic. After my hand op I found she understood the fright and loneliness one feels at times like that. However much one tries to hide the fear, it is there. With Sister I didn’t have to hid it, and this helped enormously.

 

One of her pet things was a weekly dose of cascara, whether it was needed or not. The vases of’ flowers must have wondered what had hit them on ‘cascara’ days. Occasionally Sister stood over us while the dose was administered. No getting away with it then. The consequences were usual and horrible!

 

The women’s ward had had an extension built on to the old ward where my bed was placed. An arched way connected the old and the new parts, and there were windows where there might have been sliding doors. The extension held ten beds, and had radiators so that in winter it was a little warmer.

 

One evening a blanket that had been left of a radiator began to smoulder and smoke curled up. A few patients started to panic and tried to get out of their beds, but before any damage was done the fire was out.

 

The private patients’ ward were in our block, and a door led to our ward from their corridor. We couldn’t wait to tell new patients about the two night sisters who were killed by a bomb as they were coming along that corridor, and of the ghosts who walked at midnight rounds. Oddly enough some years later when I was back in the hospital for treatment, one night unable to sleep and lying in bed

 

awake I had a weird experience. The door opened and closed, and the boards creaked as if someone had passed down the ward. I couldn’t see anyone, and yet had the feeling that some person had gone through. A little later a nurse came down and I asked her who had gone out. She said, ‘No-one. Why?’ I said I thought it might have been Sister, but the nurse said, ‘No, I haven’t been off the ward, and she isn’t here yet’. I could not to this day say that I saw a ghost. I know I had a very unpleasant feeling. I also know I was awake. So what was it?

 

We had a lot of flirting between the male patients and the girls, mostly from a distance. There was usually a romance going on, with letters delivered by kindly porters and nurses. Often when the patients were supposed to be asleep they were meeting their opposite numbers. If the Staff Nurse had known, the fur would have flown. All this broke the monotony of the day to day life of the hospital.

 

One day Mother asked if it would be possible to have me at home. The hospital said that this would be alright if there was a supply of electricity, and if a private Physio would be engaged – there was no National Health Service then. A year after the onset of my illness my parents had bought a small grocery business, with the thought in mind that if I ever came home I would need a lot of looking after, and with the shop I could be cared for and a living made at the same time. But it was an old property with gas lighting. Red tape had to be gone through before eventually we had the electricity installed on the ground floor. With the conditions fulfilled, at long last I was told I could go home.

 

At 12 o’clock Cinderella’s coach arrived with two attendants. The coach admittedly looked like an ambulance, but no Ball could have made me feel so intensely happy. To see again trees lining the roads, traffic passing, people walking along the pavements, life around me once again; and I was going to be part of it!

 

The ambulance stopped. The doors opened and a pretty little girl ran up and said, ‘Hallo’. It was my young sister who was four years old when I had gone into hospital, and was now seven. During all this time we met only twice.

 

Then I was carried into my new home. The room looked so tiny after the large wards. The settee had been filled with cushions, and as I still couldn’t bend I was lifted onto it from the stretcher, and made a big fuss of. My sister was there to see me – the sister she hadn’t known. She could vaguely remember a person who could run, jump, dance ballet, and do acrobatics to amuse her. Here was a stranger who lay flat and could only move one arm, and needed the sort of care she associated with a baby. It must have been all very strange to her.

 

Mother had cooked my favourite dinner, and all was well with the wonderful world. That night I slept in a soft bed with feather pillows. I was at the very peak of happiness. At last I was home. Next morning I woke in agony; too much softness was not for me. So back I went to a hard bed, and pillows with just one feather for luck!

 

My new Physio came to start my treatment and see what my condition was. The joints were still stiff, also the spine. The left arm was quite useful, and I had learnt to write with it. The right arm was stiff and almost useless. The fingers were curled over and had little grip in them. Slowly, a bit of a time, the adhesions were broken down. This was painful, and there were times when I hit top ‘C’! But it had to be done – though it was hard for me to appreciate this at the time.

 

The treatment lasted only a few minutes but customers knew it was no good coming in to be served in the quarter of an hour before 11 a.m., as Mother would be at the bottom of the garden. Being a sensible woman she knew my ordeal was the only way to recover, but she couldn’t bear to hear me being hurt. Once the treatment was over for the day, that was it. I was sore but I had no reason to moan.

 

The first time I washed up a few things after tea it took me ages. Luckily Mother had padded the sink with towels, as I bounced the cups a bit at first. Slowly I learnt to cope with simple jobs again, and the more I did, the more my muscles improved. Fortunately before I got polio I could cook

 

quite well, so I knew what ought to be done. Now it was a case of finding the best way to do it within my capabilities. It was fun finding out, and the first cake I made was highly praised although there was too much sugar in it. This in rationing time!

 

To get out and about I had a long wheel-chair, and as there was very little of me, and little springing in the chair, my bones were padded with pillows. In the summer, tucked around with a warm rug, it was quite cosy, but in winter, although well wrapped up, plus a hot water bottle, it was difficult to keep warm.

 

Since those days I can sympathise with babies, who have just a small rug around them and an apron, for sometimes looking miserable. The proud Mum is striding along keeping warm, saying to everyone, ‘lovely day’, and when Junior howls the last thing Mum thinks of is that the poor mite may be frozen.

 

I found it embarrassing to meet the boys and girls now eighteen and nineteen years old, with whom I had played, flirted, and danced such a few years before, although they were very kind. They had stayed at home and grown up, and for my part I was a stranger in the town and I didn’t even speak their language. This emphasized the wide difference between us. They were normal. I was not.

 

Then a letter arrived from a stranger in the local Youth Club saying he would like to come and see me. We became friends, and he never made any bother about my wheel-chair. He said, ‘This is the only way you can get out, and I want to take you out – so this is the way’. This boosted my morale and encouraged me to use a stick instead of crutches. It was a bit awkward at first, as it meant learning a new balance, and the stick looked very fragile after two crutches.

 

One of my interests was letter writing, and I had a number of pen-friends in the forces. Often when on leave they used to spend a few days with us. The family never knew which branch of His Majesty’s Forces would turn up next! It was great fun, and the more so because V.E. day had come, and when my friends said ‘cherrio’ there was a good chance of seeing them again. One or two made it clear that marriage was on their minds, but I didn’t want to marry, or even get serious about anyone. I was determined that before that day came I would improve very much – far beyond what I was capable of then.

 

The end of the war brought its relief and joy. Women – the lucky ones – had to get used to their men at home. Others found the loss of dear ones brought home twofold. Everyone in some way had to readjust and pick up their lives again. An uncle of mine was released from a prison camp, and came to live with us for a while. He bought a sports car and I had my first taste of speed. He used to scare the living daylights out of me, and ever since I have had no real love of speed.

 

Rationing was still with us and I started to help in the business by cutting up the rations, and at Xmas time weighing out the portions of dried fruit allowed on each ration book. This was a job nobody else liked as it was so sticky, but to me it was a joy to get my hands dirty by work.

 

Gradually my work in the shop increased, and now around the house I no longer used my stick to walk with. My balance was much improved and I could carry small things from a to b without dropping them. Lifting sugar and flour bags helped my muscles. My right shoulder was weak, and I was unable to lift my arm at the shoulder at all. This was to be permanent, so I have learnt to live with it – or rather without it. The left shoulder was only just able to lift the arm up, so I used to wriggle things to the edge of the shelves, wait till they tipped over, then catch them. This certainly helped the reflexes because if I missed the object it hit my head, or feet, and though a bag of flour over one’s head or feet may make a funny sketch, I can assure you that in real life it is not funny!

 

During this time I joined a club, the members of which were strangers to me. They were a jolly lot, and regarded my disabilities as a challenge once they found I didn’t need treating like a piece of Dresden china. It was taken for granted that I would join in outings and activities. If I couldn’t climb up or get down one of the lads was always willing to carry me. Once, when in the Cotswolds for a day’s outing, I said I would stay at the coach while the others went off. Oh no, that wouldn’t do, and

 

we climbed a gentle slope to the top, but coming down the other side was very steep. The boys lined the path, and I had a fireman’s lift to the bottom.

 

I started to go to local dances, and got a lot of enjoyment from watching others. The jitter-bug was all the rage then, and the swirl of skirts and the beat of the music was new and exciting. In contrast I went to watch Old Time dancing, enjoying the grace and elegance of past days.

 

An illness hit me and laid me low, and it was decided that I should go for convalescence to Exmouth. This entailed a train journey from Sutton Coldfield via Bristol and Exeter. I had never done a train journey, let alone one of such a distance, and I looked forward to it with mixed feelings. The guard was put in charge of me, and on changing trains at Temple Meads and Exeter I was trundled down passages not normally open to passengers. May I say that the men of the railways couldn’t have treated a queen better. At Exmouth the first three taxi drivers refused to take me as I had to be lifted into the vehicle. The fourth driver was kindness itself, and we were away.

 

When I arrived at the Home, I was tired, dispirited and lonely. To greet me was, ‘We do not take cripples. You will have to go back to-night’. At this I lost my temper and asked why they had accepted my booking if they didn’t take cripples. They had had a full report from the Almoner of the hospital in Birmingham, and anyway they were being paid. I refused point blank to leave the house and demanded a bed for the night – the one they had prepared for me on the ground floor. The following morning I was told rather condescendingly that it had been decided that I could stay – on the condition that I didn’t call the staff too much. (Since those days the place has been re-organized, and is now a properly run Home).

 

As I couldn’t sit down I ate standing up, and my meals were laid in the lounge so that I didn’t upset the guests.

 

The house was in a perfect position just across the promenade from the sea. From the garden I could lie and watch the world go by. My walking distance was limited, but I could manage to walk to the sand without too much difficulty as long as I was given a hand. To try walking on sand was a mistake, as I found at my first try. A local boatman noticed my difficulty, and came to my rescue and carried me to solid ground. He told me not to try that again, and thereafter gave me lifts to my deckchair and back to ‘dry land’ again. When he wasn’t on duty someone else took his place. They treated me like a queen, and were very kind.

 

I never got a boat ride. For three days there were gales, and we stood in the windows to watch the sea. Lightening forked, and the waves thundered against the rocks, and sent spray high in the air to fill the sight with a million colours, like twinkling lights. Watching one marvelled at the aweinspiring spectacle, but said a silent prayer for those at sea riding out the storm.

 

One Sunday a couple of fellows stopped to talk over the garden wall. The quiet one had a red rose in his button-hole. He asked me why I was staying there. I said because I had hurt my hip. To me that covered the obvious; the stick and my limp. My gammy hand was tucked into my trouser pocket. I never expected to see him again. He was a baker, and started to bring freshly cooked tarts for our afternoon teas. We met on most days during the last week of my stay. When I was leaving he asked if he could write, and we swopped addresses. His name was Don. He was the same age as myself, twenty, and he lived with his sister in Withycombe.

 

The letters started to arrive full of news and interest, and soon I was watching for them. The next year he came to stay with us for his holiday, and we got to know each other better. Suddenly it dawned on me that I had dropped all my boy friends and that my feelings were concentrated on Don. This feeling had crept up on me so quietly that it came as almost as a shock; I was in love, and I didn’t want to be in love.

 

We got engaged at Easter, and he came to live close by. He knew my limitations, but encouraged me to try new things. So my first local train and bus rides into town were taken with him. I found buses awkward to get on to, with the step up from the platform just after getting on the footplate. For by

 

that time the bell would have rung and the great beast would hiccup just as my foot was on the step. Many is the time I would have fallen backwards but for Don’s grip. He was strong. We were young, engaged, and in love and so with our future in front of us life was good. Looking back it seemed a time of laughter.

 

Once while looking over the caves at Cheddar Gorge we did not realize there was a table of rock across the cave which was a hands and knees job until the people in front began crawling. We were about to turn back; but one man pushed my ankles and another my shoulders and through I went. My improvement progressed. I could now cook quite well, and household chores became more extended. In the shop my counter work was better.

 

In 1950 we had been engaged for two and a half years, and we booked Whit Monday as our wedding day. The reaction among our friends when this was announced were mixed. Most gave congratulations and the credit for being sensible enough to have gone into the problems that could arise, and to have asked the advice of the doctor. There was a small section who thought it wicked for a cripple – a word I hate – to marry a normal man. Some even accused Mother of getting rid of her responsibility by palming me off on that ‘nice young man’. Little did they know what Don said about some of them.

 

I have met this type of person many times since. These people think they have a right to ask the most personal questions on the briefest of acquaintance. Their faces seem to quiver while they ask, leaning very close, ‘I hope you don’t mind me asking dear, but how do you manage in your married life?’ My stock answer is, ‘I have always loved housework, so I enjoy running my own home’. I know, and they know, that this is not what they mean at all! When they get exasperated, because all the leading questions are turned aside, they go off in a huff, thinking what a dumb cluck I am. Or, if I tell them straight out to mind their own business, I am the one who is rude. You just can’t win. What puzzles me is that these people can speak like this to me, but wouldn’t dream of asking the same questions of their own friends, or even members of their own families.

 

A week before my wedding day it was bitterly cold; so cold that an aunt suggested I wear my Dad’s long johns under my dress. This I did not agree with. On Whit Sunday it brightened up, and Whit Monday was beautiful.

 

My white wedding dress hid my limp, and my weak right hand was able to hold my bouquet. My Father was a short man and rather bothered about lifting me in and out of the wedding car. A six foot tall friend lifted me in, and dashed to the church to lift me out. My dressmaker was waiting to straighten my dress and see all was well.

 

While getting ready I saw Don crossing the road. I looked at him and knew beyond doubt that he was the man for me. I gave a silent prayer of thankfulness to God for all the help He had given me, and asked for guidance and help in our future.

 

Our honeymoon was spent in London, in a heat wave. When the papers say eggs can be fried on the pavements I can now believe them. We found travelling by tube was much the easiest way. Though when we first used them I had the fear that I should be left behind – but I wasn’t. On a later holiday I was shut in the doors, but I did get away with my skin. I enjoyed the escalators, as I had when a child. Secretly I loved to go on them, and searched out the longest ones. We came down to earth, back to a bedsitting room. We were lucky, ground floor rooms and flats being then, as now, like gold to find. We had the use of the kitchen. The bathroom was upstairs, but with an outside toilet I could manage. I was still working in the shop, and Mother gave us our main meals so that apart from snacks all I had to prepare was Sunday dinner. Our home was small, and I could manage.

 

Don hit a bad patch in health (which I hoped was not the result of my methods of looking after him!). He had boils, whitlows and trouble with his stomach. These proved to be caused by his job, and he was advised to change to outdoor work. In a snowy February he went from the heat of a bakery to the real cold outside. It did the trick and his health improved.

 

That summer I began walking from our digs to the shop, a matter of a couple of hundred yards, and felt very clever. A funny thing happened one afternoon as I was walking from the shop. Coming towards me on the other side was a woman, limping with the same leg and using a stick in the same hand as I do. When she drew abreast she began to upbraid me for mocking her, and said that I should be ashamed of myself etc. I was so flabbergasted that all I could manage to get out was, ‘But I always walk like this’. It was quite a few minutes before I could convince her that this was the case.

 

Autumn came, and while on the way to work one morning I tripped, fell, and knocked myself out. The landlady found me spark out and rather wet in the drive. My head had met a sharp stone on the way down, and this caused four stitches and a week in bed. After that I had to promise to be less independent and to wait until I could get someone to walk with me.

 

The new Elizabethan era commenced. The Queen was crowned. In the same month we heard that through the help of our doctor we had been allocated a bungalow. Within ten days we had moved. Our furnishings were only the bare essentials, but it was heaven to have a place of our own. For the first few days I wandered round the place unable to believe it was ours, and fearing I would surely awake to find it gone.

 

As I could not bend to the floor, ways and means had to be found to cope with the house. A small shovel attached to a long handle, and a strong cobweb brush were indispensable for picking things up. One of the most useful tools was a swivel mop without the mop head, ideal for picking up things which have a small lip or a handle. Polishing was easy. After putting the polish on, a duster was dropped and then I used my foot. It is much easier to get into corners with one’s foot.

 

Another old faithful is my walking stick, without which I would be lost. I couldn’t get dressed, as everything has to start at floor level and come upwards. The one thing I have to leave to Don is my stockings as they are too delicate At this job he is good, and rarely ladders them.

 

My fingers slowly got used to handling hot dishes from the oven, because if they did happen to be too hot I still had to hold them until I reached the nearest side table All this took time to learn, and during this apprenticeship, Mother and Don were most helpful.

 

One lunch time on the radio they asked for requests for a new T.V. show which was to be called ‘Songs for the Asking’. They were needing songs which had a memory connected with them. Just for fun I wrote of my iron-lung tune. A long time after this a telegram arrived to tell me that a producer was coming to see me.

 

To say that I was surprised would be an understatement. The producer explained that they thought my story was just what they needed, but the song was not the type of music which the programme used. As the orchestra was the Welsh Orchestra, would I mind if they played a tune called ‘If my Heart had Wings’. The program was to be on Tuesday, 25th October 1955 at 7.30.

 

We, my Mother, Don and I, travelled to Cardiff on the Monday, and a limousine was there to meet us at the station. It took us to the Park Hotel where the B.B.C. had booked our rooms. It looked a rather large place and I had visions of getting lost in the corridors. I didn’t do that, but while Don was out for a short time I went to the bathroom and arrived back at our room to find that the door had swung shut. The key was on the dressing table. Feeling very much a fool, I wandered around until I found a manageress’s office and meekly asked for a pass key. I made sure after that that the key was on the right side of the door.

 

We spent the evening in the hotel, and after dinner went for a drink. As the bar was only down the hallway Don went ahead while I was powdering my nose. The room he went into was a long one and he had gone to the far end. I started after him, and had gone a few yards when a gentleman touched my arm and explained that this was a gentleman’s only bar. I crept out.

 

At eleven o’clock next morning we met the other ‘requesters’ and Franklin Engelmann, the compere of the show. We ran through our stories. This done, we had lunch together.

 

The cars called for us about one thirty, and took us to the Sophia Gardens. The trees looked lovely in their autumn dress. The afternoon was a confusion of rehearsals, music, cups or tea, and tempers getting very frayed. There were also funny incidents. The baritone’s tights split as he bent down. A tree that was nailed to a wall slowly fell sideways until it found a resting place on the head and shoulders of the harpist on the next set – he was playing in the Enchanted Garden. There was the tenor trying on four different wigs in succession to see which came out best on the cameras. I was surprised that the choir wore blue shirts because they came out the whitest.

 

7.30, transmission time. ‘All quiet please’. We were on! Don had to hold me on the chair, I was shaking so much. Gosh, me next! My mind went blank. Franklin Engelmann came up the aisle, smiled, and we were away. I forget the name of my song – it was in French. He covered up for me very professionally. He was a very charming man.

 

Then it was all over. I wondered what Mother thought of me. All she said was, ‘You never smiled once’. We had a drink with the cast and all concerned, and said our goodbyes. On Wednesday we returned home, and had the B.B.C. to thank for an unforgettable experience.

 

The following spring the Ministry of Pensions said I might have an invalid carriage, and in this I found my freedom. I had to pass a sort of test to find out if I could handle her. What a thrill down a hill in Birmingham with the Man from the Ministry running beside me – how he could have stopped me goodness knows. Going to work now was fun. Rain never bothered us, and only fog and snow kept us in. Don used to ride his bike, and on nice summer days we used to ride through the country lanes and wind up at a country pub for a beer.

 

My parents and Don used to get bothered when I was out alone. They said I wasn’t safe, and looking back I don’t suppose I was. One of my favourite tricks was to find a good steep hill and ‘let her rip’. She used to go like the clappers. When the Ministry called in these chairs, oh! how I missed her, and although they sent me another she was too heavy for me to manage.

 

In the late 1950’s I hit a bad patch in health, and for a year one illness after another came along, and I was more in bed than out of it. Don during this period was so loving, and looked after me with the greatest care. My resilience and the will to fight back were stretched to the limit, and I became the victim of a nervous breakdown. I lost interest in most things, and just wanted to stay in bed all day. For the first three months of this illness we lived at my Mother’s and then the treatment began to work. We came home, and slowly I picked up the reins, and in a year I was fine again. A new club for handicapped people was opened, and was asked to become a member. Before long I was on the committee, and soon found that it could be interesting. I made some very good friends there. Before long Don was helping and was co-opted onto the committee, although he prefers to be in the background helping where he is needed. Personally I would rather be in the swim, and help organize events – not that all ideas work out as they should. One lesson life has taught me is, ‘you can’t please all the people all the time’.

 

My breakdown taught me far more about myself – with the aid of a psychiatrist. I have got a temper, but because I hate rows have always tried to control it. I have many times swallowed the temptation to answer back, only occasionally losing the battle. A drug – part of the treatment – made me brutally truthful and I fear shock a few people. My diplomatic side disappeared, and I said exactly what I thought. Nowadays, if I really get mad, I let rip and if things go wrong I admit it, but I talk my worries over with Don instead of bottling them up.

 

1965/66 was a rough spell. For ten years I had had an ulcer on the left ankle and various treatments had been applied, including an operation to tie the vein, and rests in hospital for three weeks at a time – but to no avail. It was decided that two operations were necessary, the first to cut out the ulcer, the second to graft skin over the scar. Both were successful, and although the inside of the ankle is scooped out a little, at least the skin is now healthy.

 

In 1966 another great surprise; after fifteen years of marriage I found I was pregnant. Years before we were advised against having children. We had, thought, complied, but here it was. Why, I don’t

 

know, but for two months I never told anyone about it. Then I saw a doctor, who immediately sent me to a specialist. It wasn’t to be, and I had to lose my baby. To save my health a hysterectomy was advised. Over many years I had heard many old wive’s tales, so, as I was in a place which specialised in gynaecology, I asked all the questions, to which I got the correct answers. They wiped away a lot of fears. The staff were wonderful to me all the way through, and my recovery went according to plan.

 

For once, I followed orders. For example, to have help during the first three months with housework, so as not to lift anything heavy, or damage the muscles while they were healing and knitting together. I was walking about, and even went on holiday, after a week. Soon I was enjoying life to the full.

 

Looking back over the years I must admit my life has not been dull. The road has been up hill and down dale, sometimes getting lost for a time in deep forests where the sun does not seem to penetrate. I have learnt many lessons from life, and am still learning about people and this wonderful world that we live in. My life so far, seems to have been split into three parts; complete mobility, immobility, and half of each. There is an old saying, ‘Life begins at forty’. What will the future hold?

 

My good fortune has been my parents, my dear husband, and all their comfort and help. My Maker made everything possible.

 

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LincPIN Newsletter – June 2000

 

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The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 9 – February 2000

 

CONTENTS

 

Editorial by Hilary Hallam.

 

New organisation – Sufferers of Iatrogenic Neglect S.I.N. Post Polio Syndrome – What Does It Mean Orthotically? by Mark K. Taylor MLS, CPO. Update on members using Ambroise UK Limited orthoses.

 

Polio Biology IX – Peering at Post-Polio Syndrome under the Microscope by Eddie Bollenbach, M.A. Biology. Post-Polio Syndrome – From learning it exists through to better managing your life by Hilary Hallam.

 

The Nature of Things and the PPSer by Lili in Georgia, U.S.A.

 

Swallowing Problems Information on comprehensive articles available from Peter Ellis, Ottawa, Canada – Acute Bulbar Polio 1951. What’s for Breakfast or Lunch? When there is no time or energy to cook! by Jann Hartman, B.Sc

 

Building Immunity by Vicki McKenna. Is William H Remaley in Pennsylvania the oldest living Polio Survivor? My Adventure in Paradise and PPS Whispered by Christine Ayre.

 

Heart’s Ease by LaVonne Schoneman. A Recipe for Happiness from Mary-Lou.Whitaker. Strength from Rev. Karen Utz. I’m Very Well Thank You from Kathleen Burrell.

 

Eighth International Post-Polio and Independent Living Conference 2000 Saint Louis, Missouri, U.S.A.

 

My Private War by June Millard 1.4.26 – 8.8.92. [Part 1]

 

Contact Information

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

Another Year, Decade, Century and Millennium all thrown into one. It’s now the year 2000 and 125 years since Polio’s late effects was first noted in 1875 in French medical literature Gaz. Med. (Paris) 4: 127-129 and 225-226. Over the last four years we have written numerous letters to the Colleges of Medicine, the Department of Health, the National Health Service Executive, the local Health Authority and have made representation through our MP Gillian Merron to the Ministers of Health and Social Security requesting that the awareness of Polio’s late effects is disseminated to all health and benefits professionals.

 

These are just some of the comments received by letter or phone over the last two months. Why?

 

• My GP and two Consultants say there is no such thing as PPS.

 

• My GP has been told there is no treatment for PPS so no need to assess me.

 

• My neurologist has told my GP, PPS is such that you deteriorate and then you usually

 

stabilise.

 

• My GP has said there is no NHS money to give you a multi-disciplinary assessment.

 

• My GP has told me “I don’t know anything about polio and its late effects. I will try and find

 

someone who does.”

 

• I failed to gain any more points at my Tribunal for the All at Work Test. I have been

 

medically retired from my job due to my PPS and have full medical reports about my

 

condition. Why do I have to take on extra stress to appeal again?

 

• I have been granted DLA full mobility but no care component. I have been falling more and

 

more in recent months and functionally the decline in my abilities in the home is

 

considerable and I told the doctor who visited all this. Why have I not been granted any care

 

component?

 

The amount of our taxes being wasted is still growing. Wasted on inappropriate health appointments, benefits appeals and tribunals. Our health is deteriorating and the stress being put on us is making us worse than necessary. All this could be drastically reduced if the Colleges of Medicine ensured that all new students have a much longer and more detailed lecture on polio and its late effects and provided continuing education to those already qualified and the Government ensured that fuller information on our condition was sent to all Health, Social Services and Social Security personnel. We are working hard with what energy we have to ensure that drastic changes take place this year. Your support is essential. Those in power do not have time to read long letters, but why not write a single A4 page letter to your M.P. itemising the biggest problems you have had in getting appropriate medical help and benefits. Send a copy to us and a copy to Gillian Merron MP for Lincoln.

 

The next Lincolnshire Neuroscience’s Forum meeting is on February 10th and we have had added to the agenda the urgent need for the awareness of polio and its late effects to be immediately issued to all health professionals working in the Lincolnshire Health Authority. Why? Our own Chairperson Christine Ayre has been in Lincoln Hospital during January and she rang to say, ‘please come and visit me but don’t bring flowers or fruit – bring medical articles on PPS’. It is two and a half years since we approached Lincolnshire Health Authority with our concerns that health

 

professionals were unaware of our condition, and still we have health professionals treating patients saying, ‘I know nothing about polio and its late effects. Have you got something I can read?’ Lynn Hobday and I will be attending.

 

HealthinFocus (http://www.healthinfocus.co.uk/) are hosting a conference in London at the Royal College of Physicians – ‘Patient Empowerment in the Digital Age’ on Wednesday 23rd February 2000. “This ground-breaking debate is aimed at bringing the burning issues of patient empowerment, and in particular, the use of the Internet for health information, into the public forum. Indeed, the Government has recently targeted the Internet as a key area in its healthcare strategy.” The Keynote speaker is Dr. Liam Fox, the Shadow Health Secretary. Len Van Zyl and I will be attending.

 

GINI International Polio Conference, June 8 – 10th 2000, in St. Louis, Missouri, U.S.A. (See page 21 for more information). I am doing a 12 minute summary on “Assessing Our Activities to Effectively Manage Our Lives” on June 8th and the full talk on the 10th June assisted by Richard Boone. Any contributions towards the cost of this trip would be greatly appreciated. Peter Jay who is a Welfare Visitor for the British Polio Fellowship is also speaking on 10th June on Self Management of Chronic Conditions. He is also a member of the Lincolnshire Post-Polio Network.

 

Sufferers of Iatrogenic Neglect S.I.N.

 

S.I.N. or Sufferers of Iatrogenic Neglect is a pioneering UK organisation which is concerened about iatrogenic suffering. This is any suffering which is medically induced. This suffering relates to any disorders, symptoms etc. caused inapropriately by any clinician through his/her diagnosis, manner or treatment. The group recognises that medical care within the NHS is of the highest standard to the majority, but unfortunately, mistakes and poor practice do occur. It is the failure to have these matters impartially addressed and the isolation of individual complainants that have prompted the setting up of S.I.N.

 

S.I.N. believe that the present procedures are biased against the complainant, and structured to protect the medical profession. The NHS Complaints Procedures urgently need restructuring. At present the Health Service Commissioner can refuse to investigate complaints which are within the time limits and his jurisdiction. There is no right of appeal against the HSC’s decision. The group believes that no person should have this arbitrary power which is clearly open to abuse. It is the view of many complainants that the Health Ombudsman is not impartial and fails to implement his powers to ensure quality control within the NHS. This is demonstrated by present statistics. At present there is nothing to deter health professionals from covering up medical mistakes.

 

S.I.N. believes that,

 

• there should be an Independent Statutory Authority, set up by the Government, which is

 

given the power to fully investigate complaints within the N.H.S. They believe this authority

 

should also be given the power to take disciplinary action against Doctors and any Health

 

Professionals who fail to fully cooperate, and/or mislead, during the course of investigation.

 

History has shown that self-regulation does not and cannot work!

 

• Health professionals should be made accountable when mistakes occur. The time has come

 

for the medical profession to learn from mistakes and to stop the accepted culture of coverup, which currently exists within the NHS and Government.

 

• A mechanism should be introduced within the NHS to protect patients who complain and/or

 

request a second opinion. There is evidence that complainants are discriminated against by

 

the medical profession when they require subsequent medical treatment. In some cases there

 

is evidence that doctors subsequently deny patients appropriate treatment to coverup their

 

colleagues’ incompetence and/or negligent mistakes.

 

• There should be a change in the law that currently allows doctors to mislead and lie to the

 

relatives of patients who die whilst receiving medical treatment. In response to this

 

judgement, Dr. Brian Goss of the B.M.A. stated “GP’s could now put a gloss on the cause of

 

death without fear of litigation.”

 

• There is much concern regarding the securing of medical records. The 1990 Access to

 

Health Records Act is frequently breached by GP’s, Health Authorities and Trusts, with no course of redress. Members have experienced long delays. When medical records are finally received, there is on occasion, documents missing, and/or which appear to have been altered. Invariably these documents refer to the incident which gave rise to the complaint, and always place the doctor in a better light. Any subsequent inquiry will accept these notes as being written contemporaneously, and it is almost impossible to prove otherwise. However, some of the group members have secured evidence (some forensic) which support these serious allegations. There is also evidence that, on occasion, additions are made to the medical records to maliciously discredit the complainant. What is needed forthwith is a mechanism which gives automatic and immediate access to health records. Although this may not eradicate the problem, it would certainly make it far more difficult for doctors to alter medical records, to avoid the consequences of their incompetence and/or neglect. This is why S.I.N. believes that medical records should be available after any consultation on request. This would also ensure that genuine mistakes and inaccurate information would not be propagated.

 

• S.I.N requests that the Department of Health introduces a system by which individual

 

investigating authorities are obliged to compile a list of names and contact details of

 

consenting complainants. This would facilitate communication between individual

 

complainants. Co-Directors of S.I.N.

 

Gillian M Bean & Margaret MacRae Telephone and Fax

 

0115 9431320 & 01924 407195

 

sinfo@cwcom.net mag@sinfo.freeserve.co.uk

 

Website in Progress.

 

Post Polio Syndrome What Does It Mean Orthotically?

 

Mark K. Taylor MLS, CPO University of Michigan

 

Orthotics & Prosthetics Center, Ann Arbor, Michigan, U.S.A.

 

What is post polio syndrome? This becomes a complex question that may have many answers depending on the specifics of a patient’s complaints and problems. There was a time that some feared the dreaded disease was coming back and that it would cause additional paralysis in what muscles were left. These issues puzzled patients and physicians alike. Many physicians practicing today have not had the experience of working with the polio population, as many polio patients have been stable for some time. However, after many years of use, muscles and joints seem to be screaming out, “I’ve had enough, I need relief, I need some rest!” These symptoms consisting of muscle and joint pain come from different parts of the body depending on the affected areas.

 

First of all, we need to describe exactly what polio is. After entering the body through the gastrointestinal tract and an incubation period of two weeks, the virus attacks the anterior horn cell of the spinal cord or the brainstem (1). The ventral root, which synapses with a motor nerve, is damaged to

 

the point that it is unable to send messages to the muscle cell through the terminal axon sprouts. This lack of innervation causes muscle weakness or paralysis. If enough damage is done, partial or total paralysis of the lower or upper limbs will result as well as complications and paralysis of the respiratory system. It is believed that some of the terminal axon sprouts are able to branch out to muscle cells, which have been affected and help in innervation. (2). This will allow function of the muscle cell however, that particular muscle probably will be much weaker than a normal group of cell innervation.

 

There are five main stages of polio. These consist of a prodromal phase lasting two days, an acute illness lasting approximately two months, a recovery or convalescence period lasting up to two years, a stable disability or stage of chronicity and then a post polio syndrome (3), (4) which includes symptoms of muscle pain, joint pain fatigue accompanied by additional weakness and atrophy of muscle tissue. Usually the stage of stable disability lasts for 20 to 30 years. These chronic disabilities become increasingly challenging for polio patients trying to keep up a normal pace. The exacerbation of symptoms of the polio patient is classified as “Post Polio Syndrome”, a condition composing of a “…cluster of symptoms in individuals who had paralytic polio many years earlier” (5).

 

From a survey conducted in 1987 by the National Commission on Health Statistics, there were 1.63 million polio survivors with 641,000 having some type of paralysis (6). If you divide this by the approximately 1,000 ABC facilities, there are about 600 patients per facility who will need some manner of care. Even if this number were cut in half, there would still be a substantial population for each facility. A recent problem that has arisen from this group is that many of them who require orthotic care have felt reluctant to confide in their orthotist. Many orthotic professionals have told them that they (polio patients) are hard to deal with, they are set in their ways and take a considerable amount of time to provide care. The orthotic profession must be careful not to prejudge these patients as all difficult type “A” personalities (7). Many of them have expressed offense as they have shared their feeling in the many seminars and support groups which I have had the privilege of presenting. We as professional practitioners, need to take the time to listen and to properly evaluate these patient’s conditions. It is imperative that orthotic practitioners become familiar with the polio patient’s history. Practitioners need to understand exactly what they are dealing with. Polio survivors are the type of patients that practitioners need to evaluate hands on and to know “first hand” the muscle weakness and range of motion and how the patient is substituting for the weakness to be able to function.

 

The polio patient is the most important member of his/her rehabilitation team. He/she must be allowed to assist in the design of the orthosis. He/she needs to understand that orthotic practitioners are not sentencing them to 24-hour orthotic wear but are trying to provide a system that will protect and stabilize. Be flexible with these patients. Leave options in the treatment plan. Provide patients with a choice and lead them in the right direction. Let them know that your abilities and expertise can help eliminate unwanted range of motion and allow for a more normal function. By all means, don’t lock their joints unless you absolutely have to. If you do, you may find that your carefully designed orthosis will end up in their closet, not because of your design, but because you have taken away from them the simple motions that they use to substitute for muscle weakness and joint deformity.

 

When assessing a post polio orthotic patient, consider all design options, which are available. Some of these options may be a combination of two or more orthotic designs. For example, you may have a patient that needs additional knee stability due to weakened quadriceps but is unable to tolerate the weight of conventional designs. One idea is to provide a hybrid orthosis consisting of a leaf spring design orthosis with a pre-tibial shell which provides minimum quadricep support and give just enough feedback to prevent the knee from buckling. Younger and stronger patients [40-60] can accept more aggressive designs and seem to have a willingness to try harder in allowing time for adjustment to new designs. They seem to have a better understanding of what the intended outcome is and will work to make it happen if possible. Older polio ambulatory [60-75] are often more

 

complicated due to additional muscle and joint fatigue. They seem to be more apprehensive about change. Orthotic practitioners need to realize that these older patients have experienced much in dealing with past orthotic challenges. These patients need to lead the way in their orthotic care and are the ones who need options to choose from. Elderly ambulators [75+] usually need lightweight orthoses. They want little change and practitioner listening skills need to be especially keen for this group. You must let these elderly patients know that you care about them and you also must learn to take their criticism with a smile.

 

What drives many of these patients to their physicians and eventually to orthotic facilities is pain. Polio patients with post polio syndrome will have pain. There is a reason for this pain. Pain is good: it is a tool by which a patient can be protected from further damage if he/she respects it (8). Pain is the, “Personal Awareness of Internal Notification” system. It is important to identify the source of the pain. Orthotic professionals need to focus on the musculoskeletal issues. If possible, joints need to be protected to prevent further damage while allowing the patient to continue to have mobility. By providing stability and more normal biomechanical function, joint destruction and muscle fatigue and stress can be reduced.

 

Many new and amazing materials are becoming available to orthotic professionals. This allows for lighter and stronger orthotic designs. New techniques are also available through modern technology by surgeons. Some joint deformities can now be improved dramatically, relieving stress and pain around joints and surrounding tissue. Keep your polio patients informed and don’t be afraid of the challenges. Many of you have been trained professionally to handle these types of conditions. Please remember that your area of expertise is greatly needed and polio survivors will be relying more on your professional services.

 

Reference:

 

1. Atlas of Orthotics, Second Edition, The C.V. Mosby Company, 1955:94.

 

2. Halstead, LS. Managing Post Polio: A guide to living well with Post-Polio syndrome.

 

Washington, D.C. NRH Press, 1998:9. [Lincolnshire Library Book Catalogue]

 

3. Salter, RB. Testbook of disorders and injuries of the musculoskeletal system. Baltimore, Md.

 

Williams & Williams, 1982:266.

 

4. Halstead, LS. Opcit, 5.

 

5. IBID, 7.

 

6. IBID, 11.

 

7. Halstead, LS & Grimby. Post-Polio Syndrome, Philadelphia. Hanley & Belfus, Inc.

 

1994:179.

 

8. Halstead, LS. Opcit, 122.

 

Update on members using Ambroise UK Limited orthoses.

 

Len – I went to see Professor Heatley at Lane Fox Unit, St. Thomas Hospital and he watched me walk with and without my Utx swing. He was very impressed with the difference in my walking.

 

Hilary – I went back to the Orthotic Department at Lincoln Hospital and mentioned that I was surprised at the difference it had made to my gait and walking. The comment back was “So are we.” The support it gives me allows me to walk upright again and without a cane. I can go up slopes easily, but down even slight slopes is still difficult. I cannot stand for any longer without needing to hold on. I cannot walk much further in distance but the benefits of walking normally to my total wellbeing are terrific.

 

Elizabeth – It’s brilliant. I could not stand at all without leaning on crutches and now I just carry a cane in case it locks. My daughter said “In all my life I have never seen my mother stand up straight like that.” I feel like a different woman and my partner can hold either hand when we go out.

 

Wonderful.

 

These orthoses will not help all Polio Survivors.

 

October 2005 Update. The UK supplier for UTX is RSLSteeper and their web site has full details of the UTX. According to their web site “for information on our range of orthotic services and products, please contact Mark Tomlinson on 0113 2070435 or email mark.tomlinson@rslsteeper.com“. The Dutch manufacturer’s web site can be found here (primarily Dutch language).

 

1. Have you heard about the revolutionary new callipers now available in

 

the UK? [LincPIN Volume 2 – Issue No. 8 – December 1999]

 

2. Len’s Story. [LincPIN Volume 2 – Issue No. 8 – December 1999]

 

Polio Biology by Eddie Bollenbach, M.A. Biology.

 

Eddie Bollenbach has been a long time and valued contributor to several post-polio mailing lists. He is especially noted for his knowledge and skill at communicating the current scientific understanding of the biology and biochemistry of viruses and other scientific topics relating to polio and post-polio conditions. He also keeps a watching eye on developments in scientific research, in particular their potential for opening new lines of investigation that may in the long term increase our understanding of the biological mechanisms underlying polio and post-polio conditions. Eddie has kindly agreed to write an occasional column for the Lincolnshire Post-Polio Library for which we are most grateful bearing in mind his teaching commitments as Professor of Biology at Northwestern Connecticut Community-Technical College.

 

Non Professional History – Paralytic Polio in May of 1954 at age 7 (was a control (placebo) for Salk vaccine a month earlier in April). Athletic Lifestyle from 1964-1982: Swimming, Cycling, Cross Country Skiing etc. 1982 Post Polio Syndrome. Currently use a motorized scooter for mobility and an adapted van for travel.

 

• Polio Biology I – An Introduction to the Virus 22nd August 1998.

 

• Polio Biology II – Post-Polio Syndrome’s Elusive Etiology 3rd January 1999.

 

• Polio Biology III – What About If We Need The Virus Later? 23rd April 1999.

 

• Polio Biology IV – Polio And Limiting Variables 20th May 1999.

 

• Polio Biology V – How To Avoid Limiting Variables While Exercising 4th August 1999.

 

• Polio Biology VI – The Polio War and Vaccine Strategy 6th August 1999.

 

• Polio Biology VII – Holistic Polio 17th October 1999.

 

• Polio Biology VIII – Post-Polio Pathogenesis 27th November 1999.

 

• Polio Biology IX – Peering at Post-Polio Syndrome under the Microscope 25th January

 

2000.

 

For the complete list of Eddie’s Polio Biology articles including links to recent additions see the Polio Biology Catalogue in the Lincolnshire Post-Polio Library.

 

N.B. Eddie Bollenbach is also co-author with Marcia Falconer, Ph.D. Non-Paralytic Polio and PPS. They have also recently compiled a questionairre (50 questions). They are hoping for 1000 plus to be filled in and from around the World. If you would like a copy contact the Office or online got to

 

http://www.angelfire.com/mi/nccc/PoSurvey.htm

 

Polio Biology IX – Peering at Post-Polio Syndrome under the Microscope

 

The Microscope is an instrument that revolutionized the study of biology. Before it existed everyone believed the human body was only composed of amorphous flesh. After Galileo and Janssen, the simultaneous inventors of the earliest microscopes at the beginning of the 17th Century, we knew that we were composed of tiny structures called cells. The human body contains about 10 trillion cells, small circumscribed entities with an organized internal anatomy and a complicated biochemistry. These parts together are the essence of life.

 

In human beings there are cells of many different types. For our purposes we will concern ourselves with just two of the types of cells that are affected, both acutely and persistently by polio: motor nerve cells and, secondarily, striated muscle cells.

 

A fairly accurate mental picture of a motor nerve cell can be conjured up by imagining a tree uprooted and cleaned of soil from its roots. The roots of our cell are called dendrites and they would be located inside the spinal cord. Each rootlet would be connected to the branches of another nerve cell above it. Our motor neuron has a branch coming extremely close to a muscle fiber (a long thin cell that can contract (shorten) and elongate).

 

Picture one nerve cell with 1000 branches, each branch of the cell innervates a single striated muscle fiber. If you can do this you are imagining a “giant motor unit” which is often alluded to in the polio literature. Giant motor units result after acute polio when muscle fibers lose their connection to a branch because the whole tree (nerve cell) dies. Surviving neurons grow extra branches and connect in the process of recovery from polio damage. This giant motor unit consists of a motor nerve connected by end fibers (branches) to 1000 muscle fibers.

 

When an EMG is performed the technician can tell if muscle fibers are all part of the same motor unit (if there are giant motor units). When the nerve fires, all the muscle fibers connected to it by its end fibers (branches) also fire synchronously. This will show a characteristic pattern recognizable in the EMG.

 

Striated muscle fibers are encased in bundles. I’ve tried to draw a representation of a group of striated muscle fibers below, although they are not as uniform in shape as my diagram implies. Some are round, some oval, some angular and so on. Anyway, I thought I could make a couple of interesting points about how polio, and post polio syndrome, affect the muscle fibers using these diagrams.

 

Figure 1.

 

On the left we have a cross section of a bundle of normal muscle fibers. For the sake of understanding polio we’ll suppose that all of them are innervated by healthy nerve cells and are part of the same motor unit. In an individual with Amyotrophic Lateral Sclerosis the entire bundle dies sparing no fibers because the entire nerve cell dies with all of its branches (the entire motor unit.)

 

Figure 2.

 

To the left we have a diagram of a muscle bundle but notice that individual fibers (dark centers) are dropping out. It is significant that the entire bundle, with all fibers, is not dying but only a few scattered fibers. This is characteristic of post-polio syndrome under the microscope. It suggests the nerve cell is not dying but rather end fibers are degenerating. It is possible that the fibers dying here could be picked up and reinnervated by another nerve, creating an even bigger giant motor unit. This process is ongoing in patients who have had polio with giant motor units getting bigger and bigger. When a real big one reaches the threshold of cellular exhaustion an entire muscle bundle may die.

 

At times, under the microscope, muscle biopsies of PPS patients show the loss of entire groups of fibers as happens in ALS. However, in ALS this is the rule while in PPS it is rare. I should add here that the warning against overuse is to spare the muscles and not the neurons. In polio biopsies muscle fibers sometimes appear abnormal with internal nuclei and a ragged shape. These microscopic muscle fiber features are probably due to fewer fibers, because of loss of nerve branches, working harder to maintain function.

 

Obviously the loss of muscle fibers is the result of stress on the motor nerve (our tree mentioned by analogy earlier). There is the obvious stress of age changes limiting new sprouting and shifting the dynamic compensation mechanism where denervation and reinnervation continue with the advantage tipping toward loss of nerve branches. And we now know that there is a lot of inflammation in the spinal cords of people who had polio. There are infiltrates of lymphocytes (white blood cells which mediate cellular immunity) and also anti-polio antibodies. Poliovirus RNA has even been found in PPS spinal cords. Obviously all of this is stressing the giant motor units we were left with after recovery from polio. These recent microscopic and ultra-microscopically derived facts still leave us with a mystery: is it one cause or many causes which result in our plight. I believe many.

 

Eddie Bollenbach MA

 

Edward.Bollenbach@snet.net or Bollenbach@commnet.edu Academic Page: http://www.angelfire.com/mi/nccc/

 

Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available.

 

Post-Polio Syndrome From learning it exists through to better managing your life.

 

You have been having various symptoms of pain in joints and muscles, weakness, fatigue, functional decline etc. for a few years. You have either had no firm diagnosis or been given one like M.E. but you don’t feel you fit in with others with the same diagnosis. Then you read a letter or article in a newspaper that there are late effects of having had polio in ones earlier life. The story told and the symptoms mentioned are similar to what you have been experiencing. You start to wonder could this be what is wrong with me? You had polio, or a family member had polio. [One of our members was in a class of 10 where three had paralytic polio – she was never told she had polio, but blood tests have revealed type 1 polio]. What should you do next? [N.B.You cannot have PostPolio Syndrome if you did not have nerve damage from one of the three Polio viruses.]

 

The first step is to learn more about the condition. Contact us and the British Polio Fellowship and

 

read through what is sent to you.

 

You might think the second step is to talk to your GP, actually that is your third step. Your second step is to start making a profile of your life. You need a long version for your own use, that you can use to relate back to when asked questions, and a short potted version. You cannot approach busy GP’s with armfuls of medical articles that they do not have time to read and expect them to absorb all you want to say in ten minutes. Remember the health professional you are seeing now is probably only seeing you as you are now. He has not seen all you have achieved in your life.

 

Our Information Pack for many months has included some suggested charts. We suggest that you make up

 

1. A Time-Line of Your Life colouring in bodies which provides a visual impact of where you

 

had and have problems.

 

2. An A4 page on yourself that matches those set of diagrams and

 

3. Our blue leaflet and

 

4. a good medical article on Polio’s late effects.

 

Your GP will not have time to read your A4 sheet, leaflet or medical article in the ten minutes, so be prepared to offer to come back in a weeks time.

 

The third step – the visit to your GP. Suggested approach on the lines of “As you know I have been having problems for some time which we have not been able to put a name to. I have just found out that there is a condition called the Late Effects of Polio/Post Polio Syndrome. I have brought you some literature that you might not have seen about the condition, and have made up this diagram of my life and problems.

 

I wonder if my symptoms could be related to the fact that I had polio / my brother had polio / ______. You will see that I had polio / was ill in bed for weeks and could not do sports / ______. I recovered well and did ______ (list qualifications, and sports) and have had no problems till ______ (e.g. five years ago), when I started to have problems as in this diagram. (Mention at least one good example of very evident changes, like up to five years ago I could walk up stairs in a normal fashion, then I realised I was going up one step at a time, and in the last year have had to pull myself up with my arm and restrict the number of times to cut down pain and fatigue).

 

I gather from the information I have read that PPS is by diagnosis of exclusion and just because I had polio it does not mean every symptom I get is PPS. I do appreciate that I can have other conditions instead of or as well as PPS. Would it be possible for me to come back next week when you have had time to look at this?”

 

The fourth step which ties in with the second step is that now you have started to look at your life, you must look at exactly how you are doing daily activities. Stop the next time you go to walk upstairs, or get out of a chair, or make a meal, and write down how you are doing each task. You may not have realised you have changed the way you do it. Following Polio we learned substitution of muscles. If we could not do a task one way, then other muscles came into play to help us achieve. Your body has not forgotten this and continually adapts.

 

The fifth step is what can you do to help yourself whilst you wait for the appointments, tests, diagnosis, advice and treatment. It does not matter what label or how many labels are placed on your symptoms. At the end you can start to make your life more manageable from Day 1. “Change my lifestyle? What me? Change from being a strong willed, very capable, determined, ‘don’t need any help thank-you I can manage’ (pushing someone aside to move a 56lb sack of spuds) person” I hear you say. How many Polio Survivors reading this will relate to that statement, and how many carers will say “you have described them perfectly”? There is much you can do. To give you an example what follows is the story of my PPS journey.

 

How I learned that there were Late Effects of Polio.

 

In May 1995 I was at the Rotary Disabled Games in Lincoln and heard the comment ‘I use a ventilator because I am an old polio.’ I thought gulped and said, ‘I am an old polio.’ ‘Oh were you in an iron lung, because if you were then you can get breathing problems in later life.’ Big sigh of relief from me. I had waist down paralysis in 1952 but was not in an Iron Lung. There I left it, but filed it away at the back of my mind.

 

In September ’95 – six months into new problems – I had an appointment with an Orthopaedic consultant. He was running late and we had little time to talk. Come back in two weeks for the xrays. So I wrote a letter to him with more information in it ending it with, ‘Does being an old polio have anything to do with this?’ X-rays revealed nothing so he sent me for an MRI.

 

On November 23rd 1995 I went for the results of the MRI scan and saw a different locum Consultant. Without looking up at me he said ‘I am glad you are better.’ [The results to my MRI scan were essentially normal.] He was a bit stunned when I told him that ‘I was not better.’ ‘I have continued to deteriorate over the last nine months despite adhering to the advice to exercise daily and build on it. I had polio as a child has that got anything to do with this?’ He started to look through my file and then turned to me and said, ‘There is something called the Late Effects of Polio but I know little about it. I had another patient presenting the same as yourself at my previous hospital. I referred him to a neurologist and will do the same for you.’

 

I left his consulting rooms and went straight to the Hospital Library and asked for information on the Late Effects of Polio. All that could be found was the old address of the British Polio Fellowship. I did not even know they existed. (The Librarian searched for me some days later on Post Polio Syndrome producing many more article abstracts). I was advised to go to the Health Information Service. There I was given two newspaper articles. GP Newsletter November 1992, Polio returns to haunt GP’s, and an Independent Newspaper article about Patricia Rock’s life.

 

Up till now I thought I might have MS and Alzheimers. Now at last, I had something ‘on which to hang my hat’. I had had polio with waist down paralysis at the age of 5. I was not mad. I was not imagining it all. Much from my past since falling in 1988 fell into place. Weaker arms and not being able to swim as fast or get myself out of the pool, falling over nothing, constant fatigue etc., there could be a valid reason. I contacted the British Polio Fellowship and joined as a Life Member. I imagined quite wrongly that now I would get assessed, diagnosed and treated. It was such a relief. How wrong I was.

 

To promote the awareness of PPS and improve medical care for Polio Survivors I founded the Lincolnshire Post-Polio Network. I met Chris Salter and he began our Website in February 1997. A few months later we became a registered charity, and this is our 21st Newsletter.

 

Just four or the many important facts that I have learned about Polio and its late effects that you and your doctors may not be aware of.

 

1. The post mortem 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 death of more than 60% to demonstrate any paralysis. He also found

 

that at least 90% of all anterior horn cells were in some way affected by the polio infection.

 

2. Professor WJW Sharrard of England in the 1950’s found that in a case of Non Paralytic Polio

 

that 40% damage to the anterior horn cells did not show clinically evident weakness.

 

3. Dr. Jacquelin Perry from Ranchos Los Amigos Medical Centre, Downey California reports

 

in 1995 that Beasley thirty years ago found that strength rated grade 5 on the basis of manual

 

muscle testing in patients who had had poliomyelitis was equivalent to 53% of the strength

 

in normal controls. In the present study, grade 5 strength of the quadriceps muscle in patients

 

who had had poliomyelitis was equivalent, on the average, to only 59% of the strength in

 

normal controls. Grade 4 strength also tends to be considered to be closer to normal than it

 

is. Both the study by Beasley and the present study showed that the mean strength of the

 

grade 4 muscles was approximately 40% of normal. Muscles of grade 5, 4 or even 3+

 

strength allow a person to move normally; the greater intensity of effort is unrecognised.

 

4. Grace Young, OTR reports in 1991 that the therapist must not be misled into expecting adequate endurance for functional activities based on manual muscle testing.

 

I was born Hilary Ann Foster in March 1947. No known abnormalities.

 

[At 38 years x-rays revealed congenital abnormalities of the spinal cord. T 11/12 fused and L2/3/4 fused.]

 

In January 1951 my mother, brother and I sailed to Benghazi, Libya, to join my father who was working with the Army on the telephone system. Shortly after arriving I went down with Whooping Cough (as did my brother) from which I recovered.

 

May 1952, aged just over 5, I was diagnosed with Paralytic Polio in the Army Hospital in Benghazi. Waist down paralysis. [No known upper body weakness]. After two weeks isolation was put in the Family Ward. A few days later my parents asked would swimming help and amazingly I was allowed out of hospital each afternoon to go swimming in the Mediterranean Sea at the NAAFI beach. Lady Mountbatten was coming to visit me but I never got to see her. We did not expect her to change her itinerary at a moments notice, but then she hardly expected one of the two little girls with polio to be out of hospital swimming. I started to recover and left hospital at six weeks – swimming each afternoon – my mother taking me back each morning for physiotherapy. I learned to walk again but could not run and I was always falling. I used my hands to stand from a chair or get up from the floor. I returned home to the UK had numerous physiotherapy sessions and then in 1961/62 had multiple tendon transfers at Heatherwood Hospital, Ascot by Mr. McFarlane ‘Mac the Knife’ for my dropped feet.

 

1963. I still could not run but the falling had stopped. I

 

galumphed a bit around the defence area of a Netball court and

 

learned to hit the ball so far in Rounders that I could walk round.

 

I excelled at swimming but it was all arm power as my legs were

 

weak with virtually no leg propulsion in any style but sidestroke.

 

I passed all awards to Distinction in Lifesaving. I started Judo

 

and managed to get to Orange Belt, but no further due to my leg

 

weakness. I went ice skating and still have my white Ice Hockey

 

boots. I learned to canoe. I passed ballroom dancing

 

qualifications. I left school and was a secretary for five years and

 

then a Policewoman for four years with two years in CID. I

 

married moved to Lincolnshire had two children and then

 

divorced. I passed all the RLSS Lifesaving Awards and passed

 

my RLSS and ASA Advanced Teachers Certificates. I voluntarily lifeguarded at the coast weekends from May to September. I remarried and helped my husband run his garage business and held down four other part time jobs, lifeguarding and teaching swimming, working over 60 hours a week. I never stopped.

 

October 1988 I fell. My foot slid forward in a patch of fluid on the school corridor floor and I landed heavily on my back but more to my left side. I had not fallen this way before. I damaged my neck – whiplashing it – and had some pain in my left arm. Neck collar, physio and pain killers were not enough and 7 weeks later I spent 3½ weeks in neck traction. My nerve conduction studies showed problems with my nerves in both arms, but strangely I had no symptoms in my right arm. X-rays were fine. Orthopaedic and Vascular Consultants could find nothing wrong. 108 days post accident I saw a Consultant Neurologist. He told me ‘your x-rays are better than mine’ and I was later given two steroid injections in my left shoulder. My left arm was not right, it was weaker but no matter what I said, the standard examination showed nothing wrong. [It’s only now that I learn that my diagnosis was an acute cervical radiculopathy – damage to the nerve roots in the neck.] I had lost four jobs whilst off sick I obtained some relief work but 8½ months post accident had to refuse the neurological operation offered. I was now a single parent again and had to be available for work. I could not swim as fast, or pull myself out of the water. I could not pass the lowest necessary lifesaving award to continue lifeguarding and teaching. [I now realise this was because 95% of swimming propulsion was from my arms and Professor Sharrard explained that this new nerve root damage on top of my polio damage meant that I was now functioning at a much lower level.]. I got a full time contract with Social Services in October 1989. I used to come home from work daily, sleep for two hours, totally fatigued. I had not done this pre fall.

 

1989 – 1994. I had repeated problems with my neck and left arm.

 

I had problems with the vision of my left eye, went through two

 

hospitals, private and NHS appointments but the ?optic

 

neuropathy diagnosis was discounted. [Now diagnosed as

 

weakness of muscles of movement of the left eye]. I started

 

fallling, occasionally breaking toes, but on checking the ground

 

there was nothing to trip over. In 1994 I had a Gynae operation

 

and on getting home from hospital started my daily walk – I got

 

across the road but I had to turn back totally exhausted. Day after

 

day I got a few steps further. I was told it was nothing to worry

 

about and it was not recorded. People would asked me ‘Why are

 

you limping?’ I did not realise I was. I returned to work. I knew

 

there was something wrong, but if the doctors say there is nothing

 

wrong, what can you do?

 

In February 1995 I stood up from a chair and a seering pain went down my left leg. I saw five doctors over the next month and they all said ‘It’s referred pain from a low back injury.’ As far as I knew I had not injured myself and nothing has been suggested. The pain receeded with acupuncture but my leg is left with a ‘dead’ feeling inside my leg down the path where the nerve pain was. The advice given by my GP was ‘it’s a low back injury and the latest advice is to exercise and build on it daily.’ I did this, or I tried, the more I did the worse I seemed to get, but I was told to keep going. Use it or lose it. I had x-rays. (Not much change from previously). I was now using cane to prevent falling when walking. My legs were weaker I had to use my arms more and now realised they were weaker. On 23rd November 1995 I got my MIRI scan results. “Essentially normal glad you are better.” I replied “I am not better, I have deteriorated over nine months, I had polio as a child,” brought the reply, “Oh! there is something called the late effects of polio, I know little about it, I will send you to a Neurologist.”

 

August 1996 – EMG could be lumbar radiculopathy but same results from old polio, no fasciculations so no so-called PPS. Told by Neurologist “you only have nerve root damage you don’t have PPS which is a deteriorating condition, that is if you believe it exists, which I used to, but don’t anymore since reading an article six weeks ago.”

 

February 1997 – There is not even any documentation of the fact that she had polio as a child and certainly no evidence of any neurological impairment from this, apart from some weakness of the proximal muscles of the legs.

 

August 1997 – New Hospital. – EMG. Muscle biopsy, Full Blood and other tests giving a diagnosis in December 1997. These results mean we can confidently diagnose the post polio syndrome and treat the symptoms on their merits.

 

Present Symptoms – many still inadequately or not assessed.

 

Upper body Polio age 5 with no known upper body weakness. Eye movement problems [move head instead]. Occasionally can’t Swallow [relax shoulders, tip head forward and to side] and Voice is still lowering. Laugh loud and choke every time. Cannot cough or sneeze hard without rib muscle pain. Problems with neck

 

extension and left rotation. Can’t hold arms up or out for long, change hands on phone frequently. Lifting saucepans etc now have to use two hands. Can’t carry handbag in left hand. Can’t carry plate of food from kitchen to lounge with left hand, have to use two hands. Can’t sustain pushing video fast forward button unless arm resting on arm of chair. Was touch typist but now have to type in phrases and rest wrists [use ergonomic keyboard]. Have to strain arms to get up from floor or out of normal chair causing wrist and shoulder pain.

 

Lower body (Polio age 5 – waist down paralysis) Legs weakening. Toes now do not bend. Foot drop returned to right leg. Walking distance reduced from miles to yards. Can’t drive manual car any more as can’t lift left leg up from floor. Can’t stand still for more than 30 seconds without needing to hold onto something. Can’t get out of bath, have to shower. Experience muscle fatigue when out and have to rest/sleep for couple of hours on return. Sleep, was sleeping badly tossing and turning, mind racing.

 

Improvements I have made to my life.

 

1. Mid 1995 – Starting using cane to walk. Less Falls. This is prior to learning PPS existed.

 

2. Nov 1995 – Found PPS existed and have not stopped searching for information.

 

3. Dec 1995 – Joined British Polio Fellowship.

 

4. June 1996 – requested manual wheelchair found to my horror not enough arm strength.

 

5. July 1996 – started the Lincolnshire Post-Polio Network.

 

6. August 1996 – Bought much higher bed on 3 years interest free credit. Less strain on arms.

 

7. September 1996 – Asked GP for counselling. Talked about problems with medical profession

 

and then went through life. This was an eye opener, as I went back through my life I realised

 

why I had done many things, why I had reacted in the way I did. The more I learned about

 

myself, the easier coping with now and the future became. 100% effective treatment.

 

8. October 1996 – Told by Rehab Registrar to make alterations to house and lifestyle, but could

 

not get Health Service or Social Service Support for this as had NO DIAGNOSIS.

 

9. March 1997 – Charity purchased me a large 4 wheeled Electric Scooter. It opened up my life, I could now get out to post, to doctors, to shops without needing to ask someone to take me. However, had been badly advised and told it came to pieces for transporting which it did not. Difficult finding people to take me to places out of Lincoln who could get and lift scooter into their car.

 

10.May 1997 – Took second mortgage and started the following alterations.

 

Remodelled kitchen units to make more accessible. Lowered wall cupboards. Kept just a few pieces of crockery for everyday use easily accessible, and put the rest away. If needed someone else could get them out.

 

Built in under house. Utility room bringing freezer in from garden shed, washer/dryer by new back door and bought laundry basket on wheels. Clothes airer and rail for hangers. Take washing out of dryer and put on hangers, virtually able to stop ironing. New Bathroom Toilet on tiled block, no need for hand rails. Roll in Shower. Toilet seat on legs type shower stool allows you to wash bits you normally sit on. I wrap myself in a large towel and drip dry. Small storeroom for electric scooter, manual wheelchair [use for times when can’t take scooter and to fetch shopping in from car]. Since getting flu in mid December 99 and not coping, my daughter brought my bed down to this unheated room. Four steps from the bed to toilet. Did not realise how beneficial that would be. [Social Services have now agreed to extend this room so that I can get bedroom furniture in it and put central heating in].

 

11.Started Amitryptaline 5mg at night. Sleep 8-9 hours, wake to go to the toilet and back to bed, no mind racing. This is a very low dose.

 

12.December 1997 – Got diagnosis of PPS at last. Not referred on, no advice or treatment

 

offered.

 

13.January 1998 – Asked GP to organise Ankle Foot Orthosis for right foot now dropped. [This must be made to measure and by an Orthotist who understands about Polio and PPS, and who listens to what you say.] UK first two were unsuitable but Canadian made one in three hours changed life drastically. 95% reduction in pain and swelling in ankle, knee and hip. Driving distance increased 10 fold.

 

14.October 1998 – Took possession of Motability Car fitted with Electric Hoist – took two months to find one that fitted my body for driving. VW Sharan 2.0SE automatic. Very comfortable to drive. Front seats swivel to get in and out. Arm rest for left arm, foot plate for left leg. Power steering little movement needed. High enough can get in and out without using arms. Hoist lifts scooter up and down, have to push in and out which means finding flat level to park on, or turn car round. Could not afford electric mechanism to do this. In fact being honest could not really afford to get the car, but having control of my life back far outweighed the increased financial burden.

 

15.September 1999 – Father bought me an electric rise leg raise chair. Bliss. Less pain in shoulders and wrists from not having to strain to get in and out of chair. That arm energy now available to prepare food in kitchen. Legs up and relax, weight of body now on whole body and not just bottom muscles, less pain. Able to rest more during day.

 

16.Four Charities purchased lightweight 3 wheel electric scooter. Bruno Supercub which is very stable even for heavyweights like me.

 

17.KAFO – Knee Ankle Foot Orthosis. – Utx swing from Ambroise UK Limited, Dutch made very lightweight caliper. The company found us from the PPS article in Nursing Times. I now stand straight when I walk, I walk with a normal pattern, I find it easier without a cane but have to concentrate on where I am walking. I carry my collapsible cane with me. Slopes up are no problem, but even slight slopes down for me are difficult – walk down sideways.

 

18.I ACHIEVE MORE EACH DAY NOW I have learned to pace and rest my activities. I breakdown what I do into sections, preventing much overstraining of muscles and joints. I use any aid or assistive device that helps with this. I plan my week ahead. [OK, I don’t always stick to it, but at least its an informed decision.]

 

The Nature of Things and the PPSer

 

by Lili in Georgia, U.S.A.

 

I was stricken with the polio virus along with my sister and nephew in the summer of 1946 at age 6. I wore a leg brace and a back brace for several years after my hospital stay. By my teens, I was free of all bracing and there were no signs of ever having had polio. I was a passer until I was diagnosed with PPS in the summer of 1993. At the time, I was aware I was losing stamina and was jogging to regain my strength. I had little knowledge of any late effects of polio. I was active in sports. Swimming and gardening were especially important in my life.

 

After many tests and blood studies done in 1993, I was referred to a wonderful neurologist who has been a great help to me, helping me understand how to manage my energy with as few script meds as possible. I also go to Shepherd Clinic in Atlanta Georgia for their loving care in the out patient polio clinic. They have advised me, fitted me with an electric wheelchair and approved new bracing as well as excellent physical therapy.

 

I rested for approximately two years with many warm soaks in the tub a day. Slowly I came back to a level of pain I could manage and an understanding of how important it is to be as aware as possible when my body tells me, ‘Listen, I need to rest’. Not waiting until I was hanging onto the bathroom sink, brushing my teeth, unable to hold myself up and then realize I guess I’m tired now. I’ve learned to keep my days as structured as possible. I keep a journal for recording what I am doing on a given day that may cause me to be in more pain. I also plan with Day at a Glance my

 

schedule for the week. There is a digital read out clip on clock with an alarm for the days my brain is running away with me. This is excellent to keep track of time and when the alarm sounds, I can move on to something else.

 

Stress is a killer for ‘All’ PPSers. With stress we will decline if we don’t get a handle on how much we can deal with it and how to avoid it as often as possible. Many times we cannot avoid a stressful situation as it may be sadness in our own family. This is when time taken to meditate daily pays off. I am always practising my technique to bring my mind to a very relaxed state. In the beginning this can be difficult but do not give up. You can do it. Only then can I concentrate and contemplate whatever the problem may be. Finally I am able to analytically think about this stressful problem and reach an understanding within me in a realistic way. I work at being totally honest with myself as I am assessing my life at any given time.

 

In order to bring happiness to my life and the lives of my family and friends, I look at the time I spend carefully to make certain it will bring positive results. The human body is so fragile and vulnerable. For PPSers, our life has changed from being active and strong to a new weakness we remember from so long ago. Often we suffer with much pain. As we continue to learn about our limits, accepting the reality of the situation, remember we can have a good and productive life. We must choose where we wish to spend our energy daily and to discover things that will benefit us now.

 

Awareness of the reality of our new body is, I believe, a step toward our eliminating our suffering. This second time around, suffering the late effects of polio is a kick in the teeth no question. It has been a major benefit to me to share with others via the Internet and support groups who suffer in the same way I do. We inevitably develop more kindness and compassion toward others. This has helped me to develop a strong desire to do what is necessary to be as free of suffering as possible.

 

With friendship, I send to all PPSers my warmest wishes for peace of mind with no emotional or physical pain.

 

Truly yours, *Lili in Georgia* lili g <sophia_7777@yahoo.com>

 

Swallowing ProblemsPETER ELLIS who lives in Ottawa, Canada and who had acute Bulbar Polio in 1951 has written some very comprehensive articles about his PPS. My Experiences with Progressive Oropharyngeal Dysphagia written in August 1998 and My 2nd Bedside Swallowing Assessment by my Speech Language Pathologist at the Rehabilitation Centre. January 24th 2000. These contain very detailed information including advice he has been given. If anyone is having problems in this area and would like copies of these articles please write or give us a ring. Or contact Peter by email.“PETER ELLIS” <pcellis@sympatico.ca>

What’s for Breakfast or Lunch? When there is no time or energy to cook!

 

by Jann Hartman, B.Sc

 

Tuna Sandwich on rye bread.

 

English Muffin Pizzas: spaghetti sauce on toasted muffins, top with grated cheese, and microwave or bake until cheese melts.

 

Egg Salad on Toast.

 

Quiche: mix up the night before and pop in the oven in the morning. Or make anytime, and freeze the leftovers. Heat in a microwave.

 

Leftovers: meatloaf, stew, a hearty soup or chowder. Toasted cheese sandwich (good with tomato soup, if desired).

 

Burritos (scrambled eggs, grated cheese, taco sauce rolled up in a flour tortilla) or Bean Burrito (bean dip, cheese, salsa in a tortilla).

 

Cold chicken (as is, or dip in salsa or lowfat sour cream and onion).

 

Bread or rice pudding (with raisins or other dried fruits).

 

Yogurt “sundae”: Vanilla yogurt topped with fruit, and for a little extra crunch try adding a little cereal (like Grapenuts).

 

Cottage cheese: topped with fresh berries or other fruits.

 

Pie: fruit or pumpkin/sweet potato. Fruit pies can be heated in the microwave and eaten with milk poured over the slice of pie in a bowl.

 

French toast: make ahead and freeze. Pop in toaster, and use maple syrup or fresh fruit (bananas are good).

 

Frozen waffles: top with fruit and vanilla yogurt.

 

Breakfast Shake: 1 cup yogurt and 1 cup fresh (or canned) fruit in blender. Or try a soy smoothie: soy milk and fruit. Or blend up Silky tofu and fruit (banana, kiwi, and berries are great!). The Elvis special: Peanut Butter and sliced bananas on whole wheat toast. (OK, his was fried in butter, and on white bread, but this is the “better” version and still tastes great).

 

Bagel with low-salt ham and cheese. Or use a tomato slice, onion and pepper (optional). Or try a lower fat cream cheese spread.

 

Fruit cobblers, like an Apple Crisp (cut up apples, sprinkle with brown sugar or maple syrup, stir in some cereal — I like raisin bran flakes). Eat with milk, if desired.

 

Try a Baked Potato (or microwave one), and top with: leftover or frozen vegetables and heat; or add salsa; or use low fat sour cream and soy “bacon” bits.

 

Use your own imagination, but don’t skip breakfast! And these are also good for protein snacks. Good for the whole family.

 

Easy Magic Quiche – Can be Frozen.

 

This is a quick and easy quiche recipe that needs no crust. It can be made with eggs or egg substitutes, whatever you prefer.

 

1 cup grated swiss cheese (or any combination of cheeses)

 

4 eggs, or the equivalent egg substitutes

 

1 can low-fat evaporated milk (or 1½ cups milk)

 

½ cup flour

 

½ cup or more any leftover or frozen vegetables (I like to use broccoli, cauliflower, onion; use whatever you like best).

 

Spray a 9″ pie pan with Pam (low fat spray), and put in vegetables. Sprinkle the grated cheese over the vegetables.

 

In a bowl, beat eggs, milk, and flour.

 

Pour egg mixture into the pie pan, and let set 5 minutes.

 

Bake at 325 degrees for 50 minutes, or until a knife inserted in the center comes out clean and the

 

eggs are cooked.

 

Salt and pepper to taste.

 

Leftovers can be frozen and heated up in the microwave for breakfast or a snack. It is a family favorite, so easy and versatile.

 

CREAMY TOFU PUDDING

 

10½ oz. pkg. Japanese-style firm silken tofu, cubed ¼ cup honey

 

½ tsp. vanilla extract 1/8 tsp. cinnamon

 

Chopped fresh or dried fruit (optional)

 

Combine all ingredients, except fruit, in a blender or food processor. Top each service with fruit, if desired. Makes 1 and 1/3 cups.

 

VARIATIONS: For chocolate pudding prepare as directed above, omitting cinnamon. Add 2 tablespoons unsweetened cocoa. You can add ¼ teaspoon almond extract and top with chopped nuts or miniature chocolate chips, if desired.

 

Nutrition information per 2/3 cup serving:

 

220 cal; 11 gm. protein; 4 gm. total fat (0.5 Sat. fat); 39 gm. carb; 0gm. cholesterol; 55 mg. sodium;

 

0 gm. fiber.

 

BOTTOM LINE: Put tofu, honey, vanilla, and cocoa in blender and mix well. Pour into dishes and serve. That’s it! As fast or faster than instant pudding!

 

Smoothies to make in your Blender

 

1. Pina Colada Smoothie Serves 2 2 bananas

 

1½ cups pineapple (fresh or canned) 1½ cups vanilla-flavored soy milk 2 or 3 dates (optional)

 

1-2 tablespoons shredded coconut 2 tablespoons maple syrup ice cubes

 

2. Coffee Lover’s Smoothie Serves 2

 

1 ½ cups vanilla-flavored soy milk

 

½ cup cold coffee

 

2-3 ice cubes 2 bananas

 

a dash of cinnamon

 

3. Two Berry Smoothie Serves 1-2

 

1 banana

 

1/3rd cup dried cranberries

 

1/2 cup fresh halved strawberries ½ cup vanilla-flavored soy milk

 

4. Easy Tropical Fruit Smoothie Serves 1-2

 

This shake is made with canned tropical fruit salad, a good solution when fresh fruits are unavailable.

 

1 cup canned tropical fruit salad, drained of juice

 

½ cup vanilla-flavored soy milk

 

5. Summer Smoothie Serves 1-2

 

Try this shake in the summer when peaches are in season.

 

1 peach, cut

 

1 kiwi, peeled and cut

 

½ banana

 

½ cup vanilla-flavored soy milk

 

6. Mango Nectarine Smoothie Serves 1-2

 

1 nectarine, cut

 

1 banana

 

½ cup mango pieces

 

½ cup vanilla-flavored soy milk

 

7. Pear Smoothie Serves 1

 

2/3rd cup canned pears, drained 2/3rd cup vanilla-flavored soy milk

 

8. Cantaloupe Banana Smoothie Serves 1

 

2/3rd cup diced cantaloupe

 

1 banana

 

½ cup vanilla-flavored soy milk

 

9. Nectarine Blueberry Smoothie Serves 1

 

1 nectarine, cut

 

½ cup blueberries

 

½ cup vanilla-flavored soy milk

 

10. Prune Banana Smoothie Serves 1

 

6 dried prunes

 

1 banana

 

½ cup vanilla-flavored soy milk

 

Jann Hartman, Baltimore, MD, U.S.A. Jann <jann@home.com>

 

1. Lincolnshire Post-Polio Library – Nutrition and Post Polio Syndrome –

 

Janice Hartman.

 

2. Lincolnshire Post-Polio Directory – Polio Survivors on the Internet –

 

Janice Hartman Jann’s PA Dutch Kitchen

 

Mixed DrinksOnce upon a time there lived a boiler maker. He was rather Stout, and he had several Double Gins. But his manner was always ale and hearty. One day he went to his local Inn, where he was known as a good mixer. And there he met a-Brandy-legged barmaid, and she was just the tonic he needed. He took her for a spin on his motorbike, but suddenly the side-car began to Wine, and he had to fix it with a Screwdriver.They became good friends. He was Brown and she was Pale, and they went together like Black and Tans. One day he said: “I’d like to Whiskey off to Malibu.” But she said: “I can’t go because of my ale-ments.” So he went alone, and she thought Absinthe would make his heart grow fonder. But the Rum bounder didn’t come back, and she was be-Cider herself with grief. And she became a Twisted Bitter Lemon. Which just goes to show – you should never mix your drinks!Sent to us by Steven Carrettsteve@carrett.freeserve.co.uk

If to get one pair

 

You need to buy two, Give us a thought We’ll try to help you.If odd size feet Are your fate, Give us a ringTo find your SoleMatePlease send an S.A.E. to SOLEMATES46 Gordon Road, ChingfordLONDON E4 6BUTel – (020) 85242423Life membership £4.00

DLA Question “No. 137″Q. When you go shopping to Asda how far can you walk?A. As far as the Baked Beans.

BUILDING IMMUNITY

 

By Vicki McKenna

 

As winter sets in we need to pay attention to our immune systems and ensure that immunity is improved to thus ward off ‘flu’s and colds. Poor diet can lower our defences so this is the first area to set to rights. In addition to this avoid pollution as far as possible and pesticides.

 

There are currently 60,000 chemicals being used commercially. 3,000 of these are used as food additives and 800 are found in drinking water. Traffic fumes, factory emmissions, chemicals used domestically, food farmed and grown with the use of pesticides and antibiotics – all of this affects our immunity and makes us more vunerable to disease. To support your natural defence system reduce your exposure to as many of the above pollutants as you can and eat organically grown foods where possible.

 

Make sure that you include the following daily supplements to boost immunity;

 

• Vitamin C; 1,000 -3,000mgs per day. This is antibiotic and antibacterial. It is the strongest

 

antioxidant known and in research has been shown to promote longevity. It is water soluble

 

and so an excess is excreted. Stagger your intake into 3 doses of 1,000 mgs each. Citrus

 

fruits and rosehips are good natural sources.

 

• Vitamin E; Another powerful antioxidant, this vitamin protects from free radical damage and

 

research shows it has antiageing properties. It is invaluable for the immune system. Natural

 

sources are vegetable oils, leafy vegetables and egg yolk. Take 100 – 200 i.u’s of this vitamin

 

per day.

 

• Zinc; This is a crucial antioxidant for the functioning of the immune system. It also helps to

 

detoxify lead and other toxins from the body . Do not take more than 50 mgs of this per day.

 

• A Multivitamin is an essential daily supplement. Brands such as “Quest” and “FSC” will

 

contain high amounts of vital vitamins such as A and B whereas cheaper supermarket brands

 

often have less of these and more “filler”.

 

• Above all else remember that “laughter is the best medicine”. Research shows that laughing

 

lowers blood pressure and boosts the immune system by causing us to relax, let go of our

 

cares and worries and so allows the body and thus its defence system to normalise leaving us

 

feeling happier and healthier. Bibliography;

 

1. “THE NUTRITIONAL HEALTH BIBLE” by L. Lazarides.

 

2. “A BALANCED WAY OF LIVING; Practical and Holistic Strategies for Coping with Post

 

Polio Syndrome” by Vicki McKenna.

 

Send Cheque for £10 or $30 (inc. P&P) to Vicki McKenna, 42 Regent Park Square, Glasgow G41 2AG Scotland.

 

1. Lincolnshire Post-Polio Library Book Catalogue – A Balanced Way Of

 

Living Practical and Holistic Strategies for Coping with Post Polio

 

Syndrome

 

• My grandmother started walking five miles a day when she was 60. She’s 97 now and wedon’t know where the heck she is.• The only reason I would take up jogging is so that I could hear heavy breathing again.• I joined a health club last year, spent about 400 bucks. Haven’t lost a pound. Apparentlyyou have to show up.• I have to exercise in the morning before my brain figures out what I’m doing.• I don’t exercise at all. If God meant us to touch our toes, he would have put them further upour body.• I like long walks, especially when they are taken by people who annoy me.• I have flabby thighs, but fortunately my stomach covers them.• The advantage of exercising every day is that you die healthier.• If you are going to try cross-country skiing, start with a small country.• I don’t jog. It makes the ice jump right out of my glass.Sent in by Suz O’Kelly. New York State. “SOK’ <okellysj@email.msn.com>

Is William H Remaley in Pennsylvania the oldest living Polio Survivor?

 

My father, William H. Remaley, was born in a small town called Parryville, Pennsylvania in 1904. He was stricken with polio in 1905 just when he was taking his first steps. Over the next few years his father had to work and his mother did not take care of him. His legs atrophied backwards to the point he walked with his hands and dragged himself to get around. His father eventually divorced his mother and he brought my father to the Good Shepherd Home in 1911. At that time the home

 

was a house on 6th & St. John Sts. in Allentown, Pennsylvania run by Mama and Papa Raker. They took my father in and cared for him. He played the trombone in the home’s band and they travelled to different places on a bus. He went to Jefferson Elementary School and was pulled in a wagon to get there. He went thru to 8th grade (at that time that was all).

 

A few years later Mama & Papa Raker sent my father to Children’s Hospital in Philadelphia where he had surgery on his legs to straighten them out – that stay was 17 weeks. A few years later, in fact when my father was 19 years old, he had another operation at the same hospital that kept him there 9 weeks. The good thing was he walked for the first time in his life with braces and crutches. He went to business school for a while with a few other residents but they used to skip and they were caught. He then worked for the Good Shepherd Home as supervisor of the laundry. For about 6 years when I was little they shut the laundry down and made my father the night security guard !!! He would go from building to building making sure doors were locked, find residents (especially the old folks) who would wander out of the buildings or off their floor. He even caught a robber by putting his crutch out when he ran by and got his name in the paper. Then the home reopened the laundry and made him supervisor again and he did that job until 1982 when he retired at 79 years old. That is 56 years (54 years according to Social Security). During his career at the Good Shepherd Home he met my mother who was a practical nurse. They were married in the home’s chapel by Dr. Conrad Raker, the son of Mama & Papa Raker.

 

My mother and father were married 56 years last May 8, 1999. My mother passed away January 22, 2000. My mother was sixteen years younger than my father and I never thought he would make it through losing my mother. A few years ago I asked him about my mother being sixteen years younger than him and was that proper back then – his answer – “I married a younger women so that when I got old she would take care of me and she is doing a great job”!

 

I can’t even begin to tell you how proud I am of my father – when I was young my mother worked so much at the Good Shepherd Home, weekends, double shifts, split shifts, that my father who worked regular hours was always there for me.

 

My memories of my father back in the 50’s and 60’s being handicapped are in my mind forever. My father loved to go shopping with me when my mother worked. I remember walking along Hamilton Street (the shopping area at that time) and his crutch became stuck on a lollipop that someone threw on the ground and he fell down, a little girl walked by and asked her mother “what is wrong with that man”. I looked at her in disbelief because in my mind there was nothing wrong with my father. My father could not teach me how to ride a bike but he would watch me from the front window. When I would go out front and sleigh ride he would be waiting for me to come in frozen and have hot chocolate and warm pyjamas waiting for me. He could not believe that I taught myself how to swim at the local free pool. He baked every birthday cake for me until I moved out on my own. But the most memorable thought I have is that he let me fall asleep in his arms almost every night even though he couldn’t carry me upstairs to put me to bed, my mother or a friend would do that.

 

Today my sister and myself are taking care of him at home in his own house and with my sister having only three years to retire. If I never go back to work until he’s gone I will never regret it – my father’s mind is amazing and goes back to 1910 and his stories keep us going.

 

For everyone out there with a handicap this man should be an inspiration to keep going. His only request now is not to be left alone and my sister and I will make sure he isn’t! He has not had any problems with PPS as far as we can tell.

 

If there are any Polio Survivors of my fathers era who would like to write and tell him about their early polio lives please email me or send them via the LincPIN address. I would enjoy reading them to him and he is really looking forward to getting a copy of this newsletter and hoping to hear from some British Polio Survivors.

 

My Adventure in Paradise

 

by Christine Ayre

 

I’m not easily scared, or so I tell myself. Spooks and things that go bump in the night leave me unmoved. I have been known to shudder when I see a giant spider, teeth and eyes flashing, lurking in the bath, but even that can be trapped in a sponge and dropped out of the window. What about the polio dragon? I hear you cry. As I said before nothing scares me!!!! Brave words and I’m fooling myself, I was scared once, so this is my confession.

 

A few years ago, my partner John was working in Singapore. I had visited the previous year and was enchanted by this beautiful place. Eager to return I set off the next year, planning to spend Christmas and the New Year in paradise.

 

The first time I went to Singapore we had also spent some time in Penang. This is a wonderful tropical island and I was hoping to pay a return visit. Alas this was not to be, all the Hotels were fully booked and so we had to make do with going to another, smaller Island further up the coast of Malasia, called Langkowi. First we had to fly to Penang, about half an hour flying time from Singapore, then await a flight to Langkowi.

 

While awaiting our flight in Penang we decided to have a meal. Our table overlooked the runway of the airport and gave us a perfect view of aircraft taking off and landing. In true Brit style I had ordered chicken and chips for lunch. I was in the process of inspecting the rather strange looking chicken and had come to the conclusion that it was a whole baby chicken, pressed flat and coated in breadcrumbs, when I looked up and saw coming down the runway, a little aeroplane, shining white in the sunlight and painted with exotic pink and purple orchids. It was doing a little dance, as if it could hardly wait to become airborne again. The pilot managed to calm it down and it disappeared from view. I remarked on the wildness of the plane and that only a fool would risk his life in that.

 

After lunch we headed for the departure lounge to await our flight. Our number was called and we were, with about ten more people, herded out onto the tarmac. To my amazement, there standing waiting for us was the little white plane. The pilot and his co-pilot, looking very smart in their Malasian Air Systems uniforms boarded the plane and I, fool that I am, climbed in the little door at the side, taking care not to hit my head on the ceiling. I settled into the seat behind the pilot. The only concession to comfort was a wickerwork fan, which was greatly appreciated as the plane was like an oven. We set off bumping and jolting down the runway, the little plane raced along and shot into the air as if fired from a cannon. This was no lumbering jet, or jumbo, this was the Red Rum of the air. This little plane could twist and turn, swoop and glide, as if it were a bird.

 

The flight for me was magical. We were soon thousands of feet in the air, but yet I was able to see clearly everything on the ground. On the shimmering blue sea were hundreds of little boats. When flying over land I saw jungle and rivers and smoke coming up from countless fires. As we neared our destination the sea started to be dotted with more and more little Islands and soon we spied one larger than the rest and knew we were nearly at our destination. The little plane danced us down the runway and into an enchanted land of palm and banana tree’s, thick jungle and brightly coloured birds. Lazy water buffalo eyed us as we passed.

 

We had a half hour drive to reach our Hotel, the only one on the Island. The Hotel overlooked a wide bay dotted with little volcanic islands, a perfect place for smugglers in the olden days. The Hotel and grounds were on a series of terraces stretching down to the sea and the whole of the Hotel was covered with multicoloured bourganvillia. The food was wonderful, giant prawns, crabs, lobster and my favourite, fillets of snapper grilled to perfection.

 

Our days were spent wandering round the Hotel grounds and down to the sea. Not much of a beach, but instead a long pier stretching out to sea with seats to rest my weary bones and soak up the sun and warmth.

 

It was on the way back from the pier that it happened, something I will never forget.

 

We were walking back from the pier and on leaving the beach had to walk round a large boathouse. I was walking in front as the path was narrow and boarded on one side by the boathouse and on the other by a thick screen of bushes and palm trees. Nearing the corner of the boathouse I heard footsteps, loud, slow, slapping, sort of footsteps.

 

I called to John to say we will have to make room for someone to pass, turned the corner and came face to face with a giant monitor lizard (sometimes called dragons). At the same instant I realized John wasn’t with me.

 

Anyone who has been to the tropic’s will know there is no such thing as silence, there is so much wild life and it is very vocal. On meeting this monster I heard nothing of the wild life, only the pounding of my heart. My limbs had turned to water and had the feeling that I was looking out of a fish bowl, the only thing I could see was the giant lizard.

 

He was huge, blue grey in colour, legs like tree trunks, sharp claws and a big head with little gleaming piggy eyes. We looked each other up and down. I could see him weighing me up, no doubt thinking I looked a scrawny unappetising Brit and a case of heartburn waiting to happen.

 

He shook his great head opened his mouth and displayed a set of sharp teeth, which would have been greatly improved with a bit of Colgate and a good brush. He swished his tail and lumbered off into the bushes. At that moment John came round the corner. He asked what was wrong with me and said he had been watching a monkey on the beach. I gabbled, ‘I’ve nearly been eaten by a crocodile, it was on the path, it had big teeth and piggy eyes, it nearly got me.’ ‘Don’t be silly’ he said ‘there are no crocodiles here, you have been in the sun too long.’

 

On returning to the Hotel I told one of the staff of my encounter with the monster and was told I was very lucky to escape. These dragons don’t have flames, instead they have a poisonous bite and have been known to kill small children.

 

On a recent television programme about these dragons, I learnt that the bite is so dangerous because the dragons teeth are filthy from rotting food and are alive with bacteria. One bite gives potentially fatal blood poisoning.

 

Oh yes I was scared, that is another one of my nine lives gone. After all that the Polio Dragon seems more of a pussycat.

 

Christine Ayre – catley@tesco.net Chairperson Lincolnshire Post Polio Network

 

1. Official Guide to Malaysia

 

http://www.interknowledge.com/malaysia/

 

2. Lonely Planet – Destinations: Malaysia

 

http://www.lonelyplanet.com/dest/sea/malay.htm

 

3. Malaysian Tourist Office

 

http://tourism.gov.my/

 

4. Monitor Lizards by Daniel Bennett

 

http://www.abdn.ac.uk/~nhi770/monitors.html

 

PPS Whispered

 

On my recent stay in hospital I was very careful to let everyone know that I have post polio syndrome. Just imagine my surprise when other people treat it as a deadly secret. It happened this way.

 

When the nurses were changing shift, one nurse in charge was most careful of my feelings. She would walk round the ward telling the nurse on the next shift, what was wrong with each patient.

 

When she got to my bed she would say, ‘this is Christine,’ then in a whisper she would say, ‘she has post polio syndrome.’ The first time it happened I stared open mouthed. The second time I was ready and said, ‘I’m not ashamed of having it, I don’t mind who knows.’ She said ‘Well it’s not nice for everyone to hear.’ Bless her heart, she was so nice and was only thinking of sparing my feelings. I do appreciate the thought, but when will we get it through to people that we want our condition to be known. The word can’t be passed in whispers, it must be shouted from the rooftops, then maybe the medics will start to listen. We have many emotions to deal with, despair, anger, frustration, depression, fright and now this! Jokingly, in future when I crawl out from under my stone to do a bit of shopping, I’ll wear a Tesco carrier on my head. I would hate anyone to recognise me and know what I suffer from.

 

Christine Ayre – catley@tesco.net Chairperson Lincolnshire Post Polio Network

 

HEART’S EASE

 

Deep in the night I seek surcease from pain cascading o’er my darkened windows still

 

warm spring rain trinkles down the opaque pane rain, like human tears, continues to spill

 

’til dawn brings sights banishing last night’s chills eradicating grief… sad thoughts… remain…

 

purple pansies populate window sills

 

wand’ring memories echo their refrain

 

I tread the dewy meadow, my eyes fill

 

with flowers of the field who don’t complain. Are greenest pastures heav’ns own window sill clean scoured now from last night’s tepid rain? God’s blessings bring gentle rain from above; a benediction of heart easing love.

 

LaVonne Schoneman – Vonnejo@aol.com Copyright ©1999

 

A Recipe for Happiness

 

Take twelve whole months. Clean them thoroughly of all bitterness, hate, and jealousy. Make them just as fresh and clean as possible.

 

Now cut each month into twenty-eight, thirty or thirty-one different parts, but don’t make the whole batch at once. Prepare it one day at a time out of these ingredients.

 

Mix well into each day one part of faith, one part of patience, one part of courage, and one part of work. Add to each day one part of hope, faithfulness, generosity, and meditation, and one good deed. Season the whole with a dash of good spirits, a sprinkle of fun, a pinch of play, and a cupful of good humor.

 

Pour all of this into a vessel of love. Cook thoroughly over radiant joy, garnish with a smile, and serve with quietness, unselfishness, and cheerfulness. You’re bound to have a Happy New Year.

 

Sent in by Mary-Lou.Whitaker@kinfolk.org

 

Kuna (Pronounce Q’na), Idaho

 

STRENGTH

 

We don’t always have to be strong to be strong. Sometimes our strength is expressed in being vulnerable. Sometimes we need to fall apart to regroup and stay on track.

 

We all have days when we cannot push any harder, cannot hold back self-doubt, cannot stop focusing on fear, cannot be strong. There are days when we cannot focus on being responsible. Occasionally, we don’t want to get out of our pajamas. Sometimes we cry in front of people. We expose our tiredness, irritability, or anger. Those days are okay. They are just okay.

 

Part of taking care of ourselves means we give ourselves permission to “fall apart” when we need to. We do not need to be perpetual towers of strength. We ARE strong. We have proven that. Our strength will continue if we allow ourselves the courage to feel scared, weak, and vulnerable when we need to experience those feelings.

 

Today, help me to know that is it okay to allow Myself to be human. Help me not to feel guilty or punish myself when I need to “fall apart”.

 

Author unknown – sent in by Rev. Karen Utz, PA.

 

<popette@alltel.net>

 

I’m Very Well Thank You

 

There is nothing the matter with me, I’m as healthy as I can be,

 

I have arthritis in both my knees, And when I talk – I talk with a wheeze. My pulse is weak, and my blood is thin, But – I’m awfully well for the shape I’m in. Arch supports I have for my feet,

 

Or I wouldn’t be able to be out in the street, Sleep is denied me night after night, But every morning I find I’m alright. My memory is failing, my head’s in a spin, But – I’m awfully well for the shape I’m in.

 

The moral is this – as my tale I unfold, That for you and me who are getting old, It’s better to say “I’m fine” with a grin, Than to let folks know the shape we are in. How do I know that my youth is all spent?

 

Well, my ‘get up and go’ has got up and went, But I really don’t mind when I think with a grin, Of all the grand places my got up’ has bin.

 

Old age is golden I’ve heard it said, But sometimes I wonder as I get into bed, With my ears in a drawer, my teeth in a cup, My specs on a table until I get up,

 

As sleep overtakes me I say to myself, Is there anything else I could lay on the shelf.

 

When I was young my slippers were red, I could kick my heels right over my head, When I was older my slippers were blue, But I still could dance the whole night through, Now I am old my slippers are black,

 

I walk to the shop and puff my way back, I get up each morning and dust off my wits, And pick up the paper to read the obits.

 

If my name is still missing I know I’m not dead, And so I have breakfast – and go back to bed.

 

Author Unknown

 

from Kathleen Burrell, Lincolnshire. Polio of 1917.

 

Branson, Missouri, U.S.A.June 10-13 2000 – 2nd Internet ReunionThere is going to be a Reunion of Polio Survivors, who have met on the Internet, in Branson following the GINI Conference. Branson is 4/5 hours drive south of St. Louis. The Lawrence Welk Resort is now taking bookings. All Rooms are $55. This is a get-together to share stories, information, real live hugs and will be full of laughter Opportunities to visit local attractions. Contact us or “Tommy” <tlcon@webound.com>.

EIGHTH INTERNATIONAL POST-POLIO AND INDEPENDENT LIVING CONFERENCE 2000 SAINT LOUIS, MISSOURI, U.S.A.

 

Preliminary Program – In response to feedback from previous conferences, the program offers multiple tracks of information with many interactive sessions for both health professionals and consumers. Each participant can choose from a variety of topics. Sponsored in part by the March of Dimes Birth Defects Foundation.

 

N.B. The following is excerpted from the 7 pages provided to wet your appetite. Full details on our WebSite World-Wide Conference and Seminar Diary – Card No. 6. Or ring us. For Registration forms write or fax to:-

 

Gazette International Networking Institute (GINI)

 

4207 Lindell Boulevard, #110, Saint Louis, Missouri 63108-2915, U.S.A.

 

Fax +1 314 534 5070

 

Thursday June 8th 2000 11.30 – 1.00 Opening Luncheon.

 

Welcoming Participants and Honoring Dr. Augusta S. Alba and Dr. Jacquelin Perry. 1.30 – 2.45 A Multidisciplinary Team: Evaluation and Treatment of Polio Survivors Anne Gawne, MD; Pima McConnell, PT, ATP; Linda Palmer, OTR; Melvin Hale, CO.

 

followed by 12 minute summary – Assessing Our Activities to Effectively Manager Our Lives Hilary Hallam – Lincolnshire Post-Polio Network.

 

[there are six other options at the same time]

 

Saturday June 10th 2000 – 10.30 – 11.30

 

Assessing Our Activities to Effectively Manage Our Lives Hilary Hallam, Richard Boone. Lincolnshire Post-Polio Network. and at the same time

 

Self Management of Chronic Conditions

 

Peter Jay – British Polio Fellowship [and Lincolnshire Post-Polio Network Member] [there are four other options at the same time]

 

Ends Saturday June 10th 2000 at 4.30 p.m.

 

ALSO – A Seminar for Physical and Occupational Therapists and Assistants

 

Friday June 9th 2000, through Saturday noon, June 10th 2000, during the above Conference. Registrants must attend both days to receive the full 9½ hours credit and are encouraged to attend the entire conference.

 

Costs. [NB. These are just an excerpt for an idea of costs]

 

Full Registration – Individual with disability Individual with disability and one attendant/family member Health Professional and Others (Includes PT/OT Seminar) PT/OT Seminar (June 8 8.00 – 4.45 and June 9 8.00 – 11.45) Meals.

before May 1st – After May 1st.$160 – $190$220 – $250$250 – $280$160 – $190

The complete meal package fee of $105 per person (meals are separately priced as well) includes Thursday Lunch, Friday Lunch, Friday dinner and Saturday lunch. (Full registration fee includes Thursday’s dessert bar and continental breakfasts on Friday and Saturday.)

 

Hotel Rooms – Saint Louis Marriott Pavilion Downtown.

 

All rooms are $119. Single, Double (two people one bed) and Double Double (two people two beds).

 

N.B. It is important that you use the GINI Registration Forms and Hotel Registration Forms to ensure that you are aware of all costs and cancellation details.

 

My Private War

 

by June Millard 1.4.26 – 8.8.92 [Part 1].

 

This article was written by the late June Millard whose sister is Wendy Grimmitt, a new member from Grantham who caught polio at the same time as June and now has PPS.

 

Life in the late summer of 1940 to a fourteen year old girl was an exciting and scaring one. The battle of Britain was being fought in the skies, and every day the wireless gave the score. As the numbers of German losses increased so did our hero-worship of the boys in blue.

 

The autumn came and the enemy bombers found Birmingham. Going to college became an adventure of dodging fire hoses and rubble. Often our train couldn’t get into the main station, and we had to walk about a mile into town. Soon the days brought their news of human tragedy and loss, and we realised life wasn’t as thrilling or exciting as we had thought.

 

During this time two friends and I made plans to join the Land Army at sixteen and a half, little knowing that by the end of November I would be fighting a private war, not against the Germans, but against the polio virus and its after affects. Within three days, from being a very athletic girl, I was reduced to a helpless log.

 

The ambulance sped, its bell clanging, to the Queen Elizabeth Hospital, where the doctors were

 

waiting with oxygen and pins to stick into my limbs. I couldn’t feel anything. Total paralysis. An iron-lung had been brought from another hospital as the Q.E. was awaiting delivery of its own, and that night with the electric pump thumping and the pressure of air forcing my reluctant rib-cage to work, I became their first iron-lung patient.

 

A fortnight later when their machine arrived, I was transferred to it, and it became well and truly christened – in more ways than one. No-one was more thankful than I to Lord Nuffield for this marvellous gift, and I did my best to thank him when I met him two years later in Woodlands Hospital.

 

Unable to turn my head, all I could see was the sky with its ever changing patterns, and the birds flew by. At that time a popular tune was ‘If I only had Wings’, and in my imagination I flew with the birds to far away places.

 

One night Jerry hit the local electricity supply, and while the hospital emergency supply was organised the porters pumped by hand to keep me alive. How their arms must have ached next day! Time passed, and my Mother came every day through the terrible weather to see me and to encourage me to keep on fighting. My day wasn’t from morning to night, but was measured from Mother’s goodbye kiss to her smile and ‘hallo’.

 

Not realising how complete the paralysis was, I pleaded to be let out, and gradually they let me ‘out’. One, two, three minutes. So the periods grew, till one day – one wonderfiul day – I was on a real bed for two whole hours. After that my determination grew to leave my ‘prison’ completely.

 

There followed twenty four nerve-wracking hours for the doctors and nurses, and – I had made it! Though three times they prepared the iron-lung, but, noticing, I said, ‘I’m not going back in there’, and I didn’t.

 

After ‘coming out’ my weight was only about four stone. I was so emaciated that the Teaching Sister used to bring her students to see a bone in my foot. Whenever she moved the foot it could be seen working; a demonstration impossible on a skeleton.

 

Though it was winter in wartime my small ward was a flower box, and Mother used always to bring two bunches of violets. While I was in my Lung they used to be attached to the plate that held the rubber collar. Later they were put in a little vase, arranged so that though I still couldn’t move my head – I could always see them. They meant so much to me, a promise of better things to come.

 

In a week or so it was decided that I could go into the main ward. My nurses were needed elsewhere as there were lots of wounded soldiers in the top wards. It was good to be back amongst people again, and they were very nice to me considering the thump of the iron-lung which kept a lot of them awake day and night.

 

Christmas came, with its choir of nurses at midnight, and laughter at a stern Sister who slipped on her behind while holding the plum pudding aloft; and sadness too. One of our elderly diabetics resented ‘them nurses who wouldn’t let her have her oranges’. So while visitors were there she ate two ‘to beat em’. That night ‘them nurses, fought a hard battle for her life, and lost.

 

One day, sweeping through the doors of the ward, came the professor on his rounds with his puppies (students) at his heels, and Sister, Staff and Junior Nurses joining the retinue. He was a pompous little man, who thought his word indisputable. Waving an immaculate hand in my direction he pronounced, ‘This patient will never recover the use of her body, and as for her ever walking, well, that is an impossibility.’

 

In the pause, a weak voice – mine – said, ‘You are a liar. Of course I will’. The effect was immediate. A gasp from some, giggles from others. All he could say was, ‘Why?’ I explained I could never imagine not being able to walk. He just smiled pityingly, and moved along the ward.

 

Sister told me off, but I swore I could make him eat his words no matter how long it took, my only wish being that, he would die of old age first.

 

Before long an Orthopaedic surgeon took over my case. He specialised in the treatment of infantile paralysis, as polio was then called. The first thing he ordered was that the sandbags be pushed up between my sides and arms, as the muscles were beginning to shorten. It was very painful, but I found that if I was asleep, the staff didn’t adjust them at night after they had slipped. It was amazing how well I slept ‘dead to the world’ the moment sister made her rounds.

 

In the late spring I was moved to the Orthopaedic Hospital. If anyone had told me it as to be my home for the next two and a half years I would have given up there and then. The Q.E. was centrally heated, and the colour schemes were bright and cheerful. The predominating colour of my new ward was a dismal brown, and one side was open to the elements. The place looked horrid, and I hated it. But I was trapped.

 

The Sister was a harsh disciplinarian. Everyone from the patients to the doctors were scared of her. She ruled the ward like a camp boss, and many a good nurse gave up a promising career because of her and a few weeks in her ward.

 

Her favourite patients fared better, though the pats she gave them on the cheek sounded more like slaps to me. Needless to say, I was not among the favoured few. I wasted too much time when her nurses could have been polishing and cleaning. They had to feed me and, because of my bed-sores, a lot of time had to be spent on treatment strictly on ‘doctor’s orders’.

 

There was a marvellous lady in the physio department, who gave me treatment and allowed me to stay in her department all afternoon, treating me as a human being. But for her my spirit would have been broken.

 

One good thing did come from all this. I became a fighter against all bullies; not with fists or strength – hadn’t any – but with words of silence. Strange how a stony stare can be as effective as a blazing row.

 

While the German planes were finding the motor works nearby, the sirens would go howling and the ward would awake. Amongst us were many very small children who were more frightened than we older ones. We would start to sing, the louder the better, to cover the noise of the bombs, or at least make them sound less. The little ones would join in, and soon fell asleep from sheer exhaustion. Our reward for this was hot cocoa, and, if our rendering was extra good, hot toast.

 

During this time I was splinted and on a frame, and one of my Houdini tricks was to wriggle my hand from its plaster case to relieve the ache in my shoulder. I explained it away by saying it happened in my sleep. This didn’t fool anyone, but they let me get away with it.

 

The big day of the year was Founders Day when Dame Elisabeth Cadbury and her guests came to hear our songs and see our plays. These were performed from our beds, and had been rehearsed again and again. The beds were pulled into a semi-circle facing this small audience and so began our performance.

 

We rehearsed ‘Nymphs and Shepherds’ till I loathed it. I still do. We sang ‘Greensleeves’ too, and whenever it comes on the radio even now I can’t get it switched off quickly enough. These tunes bring back too vividly unhappy memories of that time.

 

That first summer a new-comer arrived in the ward complete with chicken-pox, and the ward was put into quarantine for three weeks which meant no visitors. The visiting time was Sunday afternoon only. Now we missed our folks more than ever.

 

After this we had just one visit. Then german measles followed by mumps swept the wards, and there were more weeks of being closed away from the small family world that kept me going. Instead of being grateful to have missed those germs, I felt resentful at having been cut off for nothing.

 

Then, a year later, our martinet was moved to a male ward. She didn’t last long there. A new sister came, and we patients thought we had died and gone to heaven she was so kind.

 

At about this time we heard that people outside were collecting to ‘buy a bomb’, so the girls helped by making woolly golliwogs to wear on a coat. As my bed had a bar on the top I was the ‘sales lady’. We didn’t put a price. People gave whatever they liked or could afford. In all we made over £20 and sent the money off.

 

By now some use had returned to my left arm, and though it was a struggle, I could feed myself. At times more fell off my spoon than stayed on it. Lying perfectly flat and seeing the plate through a mirror didn’t help, but it’s surprising what one gets used to.

 

To try to restore movement in muscles can at times be painful, though there are lighter sides to the treatment. In the first cold winter there were two joys: the heat lamps and the heated swimming pool. This pool was a fairly new addition to the Department, and while the local pool was in use we had many visitors. Occasionally there were so many people that it was difficult to get at the cupboard which housed the controls. A few times when we surfaced we were a delicate shade of pink, but at least we were really warm. That we enjoyed.

 

I dreaded the bath in the ward. Having no control over any part of my body, and being a lightweight, the only way to keep me above water was to wedge my head between the taps. The bath was longer than I was, and I was afraid of coming unstuck. I knew really they wouldn’t let me drown, but the fear stayed with me.

 

A little use now returned to my feet, and the first time my ankle moved to my command was quite a day. Slowly, oh so slowly, odd muscles began to respond – hardly a flicker at first, but the thrill of seeing them get stronger made one fight on, though by now the realization of what was in front of me was very plain. The trouble was that no one believed that it would be possible for me to walk, and – to be fair – by all the medical books it was not.

 

Most polio’s limbs, go very limp and floppy but for some reason mine stiffened, and in the right hip and knee osteo-arthritis set in and calcified the cartilege. This was most uncomfortable but an unexpected bonus later on.

 

About 1943, after repeated requests, my specialist said, ‘She seems so determined to stand. Get her ready in Physio tomorrow and I’ll come down.’ Next morning, in new pink slippers, and wearing a pretty blue dressing gown, I lay and waited for the ‘moment’. At last the specialist arrived with two other doctors and what seemed to be half the hospital staff. My physio lady gave me an encouraging smile, and two of the nurses slid me off the plinth into an upright position, and my feet were on the ground for the first time in two and a half years. I could look at people, instead of up to them.

 

Looking at the specialist I said, ‘Please let me go’. He nodded at the nurses, and for one glorious moment I stood alone. As he turned away he said. ‘Get her some crutches. She might yet’.

 

When on crutches my stiffness saved me from having to wear calipers. Admittedly there were only two positions to be in: flat on my back, and upright. To say I walked would be laughable. The left foot moved forward about four inches and the other followed up to it. But I didn’t care; I was on my feet, and moving – just.

 

The muscles in both my thumbs had gone completely, so the surgeon decided to try a brand new operation; transplanting part of the muscle of the third finger like a rubber band around the back of the thumb, then threading it through a hole bored in the bone and stitching it down. I believe this was the first op of its kind in the Midlands.

 

The left hand was a great success. The right hand failed after two tries, much to the disappointment of the surgeon. Within two days I knew both times that the op on my right hand had failed. There was not any soreness after all the cutting and stitching compared with what there had been in the left hand. I knew by the lack of pain that there was no hope.

 

Before the second op I was lying there all dressed ready, my mouth dry from the injection, and rather scared. I was watching the time drag round to 9 am., dreading to feel the mask on my face – no prick in the arm and oblivion in those days – when into the ward came Snow White, as we called

 

the porter, grinning all over his face. He had come to inform me that my waiting was in vain, as the surgeon wouldn’t be back from his holidays for another week. So I disrobed and was given plenty to drink, and to add insult to injury I was stung on the hand which was to be operated on by an angry wasp.

 

To be continued next Newsletter.

 

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Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue09.html> Last modification: 10th April 2009.

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 8 – December 1999

 

Contents

 

The Lincolnshire Post Polio Network

 

wish

 

All our Members and their Families All our Contributors and Readers Seasons Greetings and

 

A Happy New Millenium

 

CHRISTMAS CARD SCRAPBOOK

 

Today

 

a light snow fell dusting everything white from

 

my living room window the neighbor’s small house comes into sight

 

cunningly framed

 

by fir boughs and snow-frosted hedges

 

tiny, twinkling Christmas tree lights fill one window

 

their chimney puffs smoke welcoming father who trudges into sight with a peddler’s pack bulging over one shoulder pulling a child-laden sled while their spotted dog sporting a red bow

 

dances alongside as they reach the front walk

 

the whole house lights up red! yellow! blue!

 

green! orange! white! along the snow-laden rooftop

 

I think this is a living Christmas card to be pasted into my

 

scrapbook of memories. Copyright © LaVonne Schoneman 1999.

 

Vonnejo@AOL.COM

 

LaVonne Schoneman, HOW TO COPE books

 

CONTENTS

 

Christmas Greeting and “Christmas Card Scrapbook” by LaVonne Schoneman.

 

Editorial by Hilary Hallam.

 

Psychological Issues and Family Relations in Postpolio Survivors by Drs. Susan and David

 

O’Grady, Ph.D.

 

Please Use Your Headlights by Millie Malone.

 

Email from John Harper in Stockholm received 4th December 1999.

 

Boots by Christine Ayre.

 

Treat Yourself at Christmas WheatSoothe and BranSoothe.

 

Have you heard about the revolutionary new callipers now available in the UK? by Maggie

 

Fuller (Basingstoke)

 

Len’s Story. Len Van Zyl.

 

Hints for hygiene – or The Fanny Pack by Maggi Barwick McElroy.

 

A Post Polio Christmas by Bob Lantrip

 

Some Dietary Advice by Jann Hartman Polio Survivor and Nutritionist.

 

Cranberry Relish Recipe Marcia Falconer.

 

Dear Santa:

 

Sylvia from Hampshire writes Sylvia Dymond.

 

Wheelchair and Car Neck Cushion idea. Linda Myers.

 

Those dreaded multi page forms. Hilary Hallam.

 

Turn CD’s into Decorations. Jann Hartman.

 

Carers by Kathleen Perkin.

 

Accessible Kauai by Marcia Falconer.

 

N.B. – If you have been prescribed Mestinon/Pyridostigmine the following article will be of

 

interest to your Doctor. Abstract Only.

 

Lincolnshire Post-Polio Library Articles added since last newsletter with grateful thanks to the authors.

 

The Lincolnshire Association of Physical Disabilities

 

Contact Information

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

Much has happened in the last two months, although it only seems like a few weeks. To bring you up to date. We have added new articles to our WebSite (pages 21-22). We have attended the first full meeting of the reformed Neuroscience’s Group for Lincolnshire. With Councillor Barry Fippard from the Central Lincoln Community Health Council in the Chair, Deborah Jaines from the LHA as organiser and secretary, more neurological support groups represented (others to be invited), other CHC’s, and with representatives to join for the next meeting from the PCG’s, the Neurological Services and Social Services, we are happy that a positive step has been taken and that future

 

meetings (every three months) will cover all aspects of healthcare and see better services in the future for those with neurological conditions. We would like to express our thanks to David and Anne Proctor of the Scoliosis Association UK who worked very hard to see this failing group reformed in a better format, and to the ME Self Help Group in Lincoln who also stood with us.

 

Joan Headley the Executive Director of GINI (Gazette International Networking Institute) has written to tell me that the organising committee have accepted my presentation to speak at GINI’s Eighth International Post-Polio and Independent Living Conference in St. Louis, Missouri, June 8th – 10th 2000. I look forward to what is going to be an exciting and rewarding experience. Meeting Joan Headley and others at GINI, PPS Specialists, Dorothea Nudelman who wrote Healing the Blues (see page 9), other speakers and most of all Polio Survivors, many of whom I have corresponded with on the Internet, some of whom I have already met.

 

To take the most advantage of the flight across to the States I am looking to hire a vehicle and visit some more PPS Clinics, PPS Specialists and Groups. I have already been asked if I will give my presentation after the conference at two other venues. If anyone has any spare air miles, or would like to help me raise the necessary sponsorship/funds for this trip then please get in touch.

 

Marsh Gelbart wrote an article in the Nursing Times (8 – 14th September) on Post-Polio. Part of the article featured one of our members Len Van Zyl. Ken Spooner from Ambroise UK Limited saw the Nursing Times on a coffee table in a hospital and got in touch with Len who now has a new Utx KAFO. Read Len’s PPS story page 11 and Maggie’s page 10.

 

Lots of discussion is taking place on polio lists about family relationships and how difficult it is to decide how much to tell your family and friends about how you really are and feel. They also have similar problems in knowing what to ask and what to say. Counselling can help – see articles pages 4 – 7.

 

Can I please remind members who joined us last November/December that their memberships are due for renewal. Thank you to those who have already sent their fees.

 

‘No treatment for PPS so no need for Assessment’ If you have been told this it is not true.

 

Phone calls are coming in from many counties – my GP tells me there is no treatment for PPS so no need to send me for any assessments. So far we have been unable to find out where this advice is coming from.

 

Firstly there is need for correct assessment by a mutli-disciplinary team to ensure that our muscles are being correctly graded with repetitive and sustaining testing included. We need to be seen doing actions, not just examined lying on a couch.

 

Secondly, just because we had polio and/or now have a diagnosis of PPS, it does not mean we cannot have or get other conditions as well.

 

Thirdly, there are many articles on the treatments and aids that should be considered in managing our energy levels e.g. canes, crutches, electric scooter and wheelchairs, Braces, Callipers, Body Supports, Ventilators, Physiotherapy, Hydrotherapy etc.

 

Read the abstract of the article (Page 21) presented by Mary Westbrook PhD at the International Federation of Physical Medicine and Rehabilitation in Sydney March 1995 entitled Changes in Post-Polio Survivors Over Five Years: Symptoms and Reactions to Treatments.

 

Also Dr. Ali Arshad has just had the results of his PPS survey in Leeds mostly from British Polio Fellowship Members of the Leeds Branch published in Yorkshire Medicine. He concludes with the statement:

 

Rehabilitation Specialists can provide a suitable treatment package and can co-ordinate referrals for physiotherapy, orthotic devices and other interventions. There are also support groups where additional help may be sought.

 

And read the email from John in Sweden page 7.

 

If you have not already written to us with detaits of how you have fared in getting assessed, advised and treated and would like to do so, then we would like to hear it, good and bad. We have to prove the need to get Polio Survivors the PPS Clinics and trained PPS personal that are needed. We are told there is no need, there are not enough of us to warrant it. However, in Lincolnshire, and possibly other counties, the Health Authorities do not record which condition you have on their outpatient clinic statistics. Your information could help us and the British Polio Fellowship prove the need.

 

If you think a request to us has not produced the desired response then we would prefer you to ring and remind us than continue to wait.

 

May I take this opportunity of wishing you all Seasons Greetings and A Happy New Year / Decade / Century / Millenium.

 

PSYCHOLOGICAL ISSUES AND FAMILY RELATIONS IN POSTPOLIO SURVIVORS

 

by Drs. Susan and David O’Grady, Ph.D. PART 1.

 

How does post polio syndrome affect survivors and their families emotionally and interpersonally? It was our hope that by talking about these things, you will be better able to understand yourself, what you want and need, why you feel what you feel, and how you can better understand your partners feelings.

 

Our focus was on communication. How polio survivors can better communicate to their partners and family what the polio experience is like for them, and so partners and family can communicate to the polio survivor what their own experience is like. We all know very well that in human interaction misunderstandings are common. We misread each other, assume things erroneously, fail to listen, and fail to put our thoughts into words.

 

Many things stand in the way of communication, but when we are successful and do communicate, we naturally feel a great sense of relief at being understood, and this feels good. But more than just making us feel good, we now know, from the results of years of medical research, that expressing feelings and tending to your close personal relationships is good for your health. It helps those with cancer live longer, it diminishes the effects of heart disease, controls hypertension and strengthens the immune system.

 

The late effects of polio are threatening and upsetting because they change the things people can do and how they do them. Polio survivors who had learned to adjust to the impairments caused by their first illness often quite satisfactorily, are then decades later, unexpectedly faced with new deterioration in functioning. 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. Or, what used to be easy, you now have to work hard to do. Or, what you used to do independently, you now have to have help to do. Or, what you used to do without an adaptive device, can only be done with one. Or, what used to be comfortable to do, you now do only with significant pain. Or, what you used to accomplish in two hours now takes half a day and then you’re too tired to do anything else.

 

In the initial stage of post-polio syndrome there is commonly a period of confusion; new symptoms may be dismissed, minimized, or attributed to something else. Once the true explanation is found, it

 

is common to have a great deal of fear and anger; fear of possible progression of symptoms, fear of the unpredictable nature of the syndrome and fear of how helpless you may become.

 

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 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. Because the physical condition has changed, denial and minimization can be hurtful because now more than ever you need to pay attention to your fatigue level or pain, to avoid exhaustion and worsening the condition. It is a major change to let go of this refusal to give in, of pushing oneself to one’s limit.

 

It is natural to feel a deep sense of loss of one’s identity and of abilities. You are forced to accept a new identity, perhaps one you don’t like very much. For example, you may feel like a wet blanket who holds everyone back because you can’t keep up on excursions, hiking, golf with your buddies. Perhaps in the past you had no physical handicaps or disabilities, that was for other people – but now to your dismay, you find you’ve joined the club.

 

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. Often people feel bad about themselves, inadequate in their usual roles. For example, one may wish to make a dress for a granddaughter, or a gourmet dinner for friends but be hurting too much to do it. This can lead to feelings of guilt and of self-punishment.

 

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. When you are feeling down or unhappy, your ability to distract yourself from your pain is decreased. Since the mind and body interact, these emotional reactions lead to increased muscle tension and anxiety, causing physiological changes within the body incompatible with relaxation. You need to learn ways to relax, to regenerate emotionally and physically. Family members may have several styles of coping when dealing with someone with chronic pain. Denial and avoidance is common. You may avoid talking with your partner, pretending not to notice the distress. Others may avoid by taking over their partners responsibilities. These coping strategies are not necessarily bad unless you are unaware of your feelings regarding the change in your partners status.

 

Why do people 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, believing that talking about their own feelings and worries will make their partner feel worse since the partner may already be afraid and demoralized. 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.

 

PART 2

 

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

 

The group was divided into polio survivors and family members. Each group was asked one

 

question, with discussion lasting 45 minutes. They then reconvened to summarize and discuss what the two groups said. The question posed to each group was:

 

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

 

The Polio Survivors:- by all accounts this turned out to be an intense discussion. Strong feelings were stirred up. Many were moved, some cried. It was clear that the process of confronting the emotions surrounding the experience of post-polio is difficult and painful. Similarly communicating about these feelings to family and even to other polio survivors can sometimes feel overwhelming. Paraphrased, here are some of the areas of concern:

 

• We are afraid of what the future holds. In fact, sometimes the future seems so scary we can’t

 

allow ourselves to even think about it, let alone talk about it.

 

• 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 wish we had reassurance that we will

 

not become so burdensome that others will leave us.

 

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

 

deceiving. More often than not, we look much better than we are. Weakness, fatigue and

 

pain are less visible than braces and wheelchairs, but no less real.

 

• When we are tired, we mean it. In fact, it usually means we’re exhausted, and it may not be

 

remedied by a short rest. Don’t over estimate how much we can do. We struggle enough as it

 

is, to figure out our own limitations.

 

• Sometimes we need to put ourselves first, which is difficult for most of us to do, as this is a

 

major shift for us. We would like you to help us do this by co-operating when we say there is

 

something we need. We know the difference between a need and a whim. It is hard for us to

 

ask for help, it doesn’t come easily.

 

Conflict within the group emerged when some participants expressed fear and frustration and others reacted with anger. It seemed that both fear and anger were central and universal experiences, but that people cope differently. The anger expressed seemed to grow out of a need to fight feelings of vulnerability and helplessness and instead maintain a sense of control and a positive attitude. Worried that their fears and sorrow will pull them down, and unwilling to let themselves stay down, some people use anger to protect against feeling fear. Other people are afraid of how intense their anger can become and so they inhibit and suppress it.

 

Partners and families:- All expressed a deep commitment to their partner and a readiness to be a part of their lives, regardless of changes in physical status. This commitment was not naive or superficial, but seemed founded on genuine love and respect for the challenges their partner have faced and will continue to face.

 

They acknowledged that coping with post-polio syndrome involves a series of compromises, but they adapt by remaining flexible and tolerant. Within this group there was much commonality, but when differences of experience emerged that group was quite respectful and compassionate.

 

PART 3

 

Partner and family expressed the following concerns:

 

• It is difficult to see our partners in pain. We feel helpless to ease physical suffering.

 

Therefore, we’d like our partners to listen to their bodies, slow down and not be so

 

perfectionistic.

 

• It is hard to see our partners reject changes that would help them cope better (e.g. using a

 

wheelchair or a scooter). We do not view use of an adaptive device as failure, but as an

 

increase in functionality and freedom to enjoy life together.

 

• Sometimes our partner’s anger is hard to deal with. When they are feeling tired and

 

frustrated they get irritable, if we say the wrong thing, they get upset. We sometimes have to ignore what they’re saying so that we don’t take it too personally.

 

• The lack of predictability of the illness is frustrating and frightening. We don’t know what

 

our partners will be able to do in the future. Therefore, we feel an imperative to live for

 

today and not postpone doing things that give us pleasure.

 

• 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. We worry about the

 

possibility of not being able to give necessary help.

 

• 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.

 

CONCLUSION

 

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.

 

Reprinted from Florida East Coast Post-PoIio Support Group November/December 1999 Newsletter. Reprinted from Colorado Post-Polio Connections, Spring 1999; reprinted from Southern Alberta Post Polio Support Society #7, Post Polio Echoes, May 1997; reprinted from (Mt. Diablo Post Polio Network) MDPPN Newsletter, Volume 6 #01

 

Anita from Wichita, Kansas writes..“Anita Bjorling” <anitabjorling@hotmail.com>I think anyone who thinks PPS is not progressive is uninformed. There are plateaus, but even though we are pacing, at least for me, my strength level is less than a year ago and my fatigue level is higher. I don’t think it’s depressing to talk straight about PPS, it is harder for me when everyone pretends nothing has changed.

Please Use Your Headlights

 

by Millie Malone.

 

Published in GLEANINGS, Nebraska Polio Survivors Association.

 

Have you ever been talking to someone when your train of thought jumped the tracks? How about having someone come up to you in a public place, pump your hand and ask heartily how you are, mentioning that haven’t seen you in ages and you have not changed a bit? Do you think, “Either you’ve changed a lot, or I never clapped eyes on you before in my life!”? Perhaps you start to go upstairs to get something, sit down to try to remember what that something was, and then forget if you were going up or coming down? If these things happen to you, my friend, you may be a victim of Polio Brain Fog.

 

Dr. Richard Bruno has mentioned in some of his articles that polio survivors get brain fatigue. I have noticed this in fellow polio survivors as well as in myself. If I start a project after 8:00 PM, it had better be a no-brainer or I will certainly have to do it over again the next day. When I am extremely tired, I find I can’t even hear properly, I cannot concentrate, either.

 

When I am very fatigued, my brain sort of runs on low beams. Bright enough to barely function, but

 

certainly not something you would want to depend on in a crisis. This is particularly frustrating for those of us who got along by using our intelligence instead of our non existent or non-functioning muscles. As children, we could not run and play with the other kids, so we were the ones curled up with a good book. We were the ones who got all A’s and were teased by the other children for being Brains. Those same teasing children were usually the ones leaning over our desks copying our answers.

 

Now, when we try to learn something new, we find we’ve overworked our brains, too. Bummer! Walking has always been difficult, sometimes breathing has given me a problem, but my brain was my saving grace. I learned quickly, retained it all and earned good grades. Even when I took some College classes after my husband died, I earned a 3.85 grade point average. I cheated though. No, I didn’t copy anyone’s work. I scheduled all my classes for times when I was well rested. Middle of the day stuff. Very early evenings as opposed to the one class in which I only got a B and which ruined my till then perfect 4.0 GPA — the dreaded Algebra class. The only available time to take that one was from 6:00 PM till 10:00 PM. I struggled with that class. It was simply too long and too late in the day. I have since figured out that I need fog lights after 8:00 PM. That’s when my brain goes off duty.

 

I have tried taking various supplements that are supposed to help with memory retention. Ginkgo Biloba, Vitamin E, all those herbal things. I didn’t notice any dramatic changes in my memory loss. Perhaps that was because I kept forgetting to take them. If you, like me, suffer from Polio Fog, don’t be alarmed. It is not necessarily senility, Parkinson’s Disease or Alzheimer’s. Try scheduling your thought-intensive tasks for the time of day in which you are most rested and see if that doesn’t help. And remember to use your fog lights after 8:00 PM.

 

Millie Malone <milmal@FRONTIERNET.NET>

 

Email from John Harper in Stockholm received 4th December 1999

 

To LincsPPN

 

My wife had polio as a toddler in 1944, right leg shorter and weaker, a slight limp. No real trouble until weakness/tiredness started slowly coming a couple of years ago and now diagnosed with PPS earlier this year.

 

Here in Sweden there are rehabilitation centres for exercises, healthy living, learning to live with PPS, usually on a weekly basis. I guess you have a similar set-up in the UK.

 

My wife has been offered a week in Sweden, or abroad if she can find something.

 

So my question is: could you please let me know if there is something available in the UK for foreigners. This would be paid by the Swedish medical authorities.

 

John.

 

I replied and asked if john could give me more information and this is his reply… Hilary,

 

My wife phoned one of the major hospitals, and in April saw a physiotherapist and occupational therapist. In August she saw a PPS doctor, and again last week. Here is

 

what has happened so far:

 

• she had an EMG, showed some recent loss

 

• has been classified as 25% disabled

 

• now works a four-day week (previously full time)

 

• gets 25% disability benefit

 

• has water gymnastics once a week, run by a physiotherapist

 

• has been offered foot-care

 

• will be getting an ankle support

 

• has been invited to a one-week rehabilitation programme in Sweden, with

 

specialists running the whole programme.

 

Most of this is free or low-cost. It’s really been an eye-opener for both of us. In Sweden we are very critical of the national health service, and in many cases that is justified. But this has been fantastic.

 

“john f harper” <john.harper@swipnet.se>

 

Boots

 

by Christine Ayre

 

It’s strange how a simple thing can bring back memories, the simple thing which set off a string of memories for me was when I decided to buy a new pair of boots.

 

Trying on the new boots set me looking down the years to the time when I was a child of about eight and at that time I was forced to wear the most awful boots.

 

I remember a man coming to my school, me being called out of class and sitting in the cloakroom being measured for the boots.

 

The school I attended was of the Dickensian type, bleak, cold and old, with teachers to match. The classroom was heated by a large pot bellied stove. The kids sitting next to the stove were always red and shiny with the heat, but those sitting the farthest away were covered by a thin coat of ice.

 

The cloakroom where I sat in misery being measured for my boots, was cold and cheerless. With its quarry tiled floor and the rows of damp coats hanging all around me, it echoed my mood as I contemplated my new boots.

 

Looking back on this time I realize that I must have looked a sight. My mother tended to dress me in a rather old fashioned way. I ask myself now why did I have to wear those large pink knickers with a pocket in the leg? What was I supposed to put in the pocket? What would people think when they saw me put my hand up my skirt and scrabble round getting whatever it was out of the pocket?

 

Did I really need the hand knitted wool vest with sleeves, which when I was wearing it made me look as if my body was trapped in a concertina.

 

And of course the liberty bodice, who can forget that. Putting it on in the morning was like being put in a straight jacket and did it need all those rubber buttons which after being ironed a few times were squashed flat and sticky.

 

Next I wore a flannel petticoat, then a blouse and gym slip, brown lisle stockings, cardigan, coat, a hated red pixie hood, scarf, gloves and of course on the ends of my sparrow like legs were the brown boots and a knee length calliper. I was even promised a pair of white boots for the Summer. Thankfully they never arrived.

 

I remember once my grandmother turning up with a pair of brown leather gaiters, which she said would be ideal for Christine to wear. That was when I started to become a rebel and told grandmother what she could do with her gaiters. From that time on I was classed as an ungrateful and cheeky little brat.

 

My next memory of boots is rather delightful, at least I think so. I will tell you the story and you can judge for yourself.

 

It happened a few years ago when I visited the Lincolnshire Show. At that time I was still able to walk about quite well. I had been wandering about looking at the animals. The pigs in their polished pink perfection. Sheep who must have spent hours in front of the mirror, combing up their wool. The friendly goats with coats so white, horns polished for the show, and the cows with their beautiful brown eyes and long eyelashes owing nothing to the mascara brush.

 

I started walking round the trade stands and at last came to a very large tent which contained nothing but shoes and boots. They were displayed in tiers as in a grandstand and I was quite some time looking at the display. One pair of boots caught my eye. They were standing on the bottom tier and although they were seemingly just a normal pair of brown leather ankle boots, when I looked at the price, I realized they must be special. They were priced at £125.

 

I was standing gazing at these superior boots when a woman came and stood next to me. She was also looking at the boots. She had with her a standard poodle, a very large dog of the most delicate shade of apricot, much beribboned, perfumed and primped, with pom poms on every available limb. He wore an expression of bored disdain. I smiled at him as I tend to do with all dogs. He looked at me in a scornful way, as if I were the lowest form of life.

 

The woman moved off with her exalted hound, he with his high stepping gait and his nose in the air. As he passed the £125 boots he lifted his leg and with exquisite accuracy he pee’ed in one of the boots. The only evidence of this was a little spurt of steam issuing from the lace hole of the boot, which proved to me that the boots were worth the money as they were completely watertight.

 

Now I come to the warning in this story, when you next go to buy footwear ask the shop assistant if anyone has been in with an apricot poodle. Before buying the shoes or boots look for steam issuing from the lace holes, put your nose inside and have a good sniff and most important feel inside to see if they are wet.

 

I know the question you are all asking. Did I tell the shop owner about the poodle peeing in the boot? Well think about it. Would you have been able to do it and keep a straight face?

 

This is the last time I will be writing for the LincPIN this year. I will be back in the next century with some more lurid tales. It just remains for me to wish you a happy Christmas and a healthy and painfree new year.

 

Christine Ayre Chairperson LincsPPN catley@tesco.net

 

Rosemary had been in love with basil for quite some thyme. Basil was regarded as a sage, and was thought to be worth a mint. And rosemary decided he would make an idill husband. So, when one day he proposed marriage, she accepted gladly.But on the wedding day, he did not turnip. For he had been leading her up the garden path, and had run off with a swede-ish au pear. When rosemary discovered she had been jilted, it cut her to the marrow, and she fled from the church with a face as red as a beetroot.Daisy her bridesmaid tried to comfort her, and told her she was well rid of basil. Because he was nothing but a pansy, and only last week he had aster for a date, and when she refused, he tried to kiss her on the tulips.

 

But her friend lily who was a martial arts expert, came to her rescue, and laid basil out with one carroty chop. But this only made rosemary more angry, and she made such a scene, she was arrested for disturbing the peas. Meanwhile, basil and the swede-ish au pear decided to do a runner to Brussels and even though there was not mushroom, they stowed away in the hold of a steamer. But on the way it sprang a leek and sank, and they were never seen again.And that shallot, because that is the end of this tale.By DANNY NORMAN, Southampton UKforwarded with permission by Steve Carrett <steve@CARRETT.FREESERVE.CO.UK>

Treat Yourself at Christmas WheatSoothe and BranSoothe

 

Why not treat yourself and your friends this Christmas to a wonderful warming “WheatSoothe” wheatbag or a “BranSoothe” branbag.

 

WheatSoothe and BranSoothe are invaluable for people with aches and pains. Just heat up the bags in either the microwave, in the oven, or on a radiator, then slap the warm bag on your important little places and experience the sensuous warmth crawling over your vital parts. Great for around the neck and to ease shoulder pains, aching muscles, backache; wonderful on legs and to warm feet; the feeling can be summed up in one word, ecstasy.

 

The bags can also be used straight from the fridge or freezer. Just right for those black eyes and cauliflower ears one might receive at wild millennium parties. Also just right for the hangover headache.

 

These soother bags are being made and marketed by the LincsPPN Committee. All proceeds will go to the LincsPPN. Made from the finest wheat and bran and covered in a tasteful dark green tartan fabric, they measure 27 ins by 6 ins and are pocketed to ensure the filling stays put. If you would like one of these bags made by Christine Ayre and Myra McManus then please order early for Christmas.

 

WheatSoothe are £7.50 Inc postage (UK only), this is half the retail price in the shops. BranSoothe are £4.99 Inc postage. (UK only).

 

Please send orders with cheque to LincsPPN

 

also

 

Books available from the LincsPPN

 

Healing the Blues – Drug Free Psychotherapy for Depression

 

by Dorothea Nudelman Polio Survivor and David Willingham, MSW

 

A hardback autographed book of 235 pages LincsPPN UK price is £10 inc. post & packing. USA/Canada please contact Dorothea Nudelman <dnudelman@earthlink.net>

 

Managing Post-Polio A Guide to Living Well with Post-Polio Syndrome

 

Edited by Lauro S. Halstead, M.D. (Paperback 6 x 9 – 256p)

 

LincsPPN UK price is – Members £8.00 inc. p&p; Non Members £10.00 inc. p&p

 

Published by NRH (National Rehabilitation Hospital) Press Washington, D.C. 20010-2949 U.S.A. – (202) 877-1776.

 

Have you heard about the revolutionary new callipers now available in the UK?

 

by Maggie Fuller (Basingstoke)

 

These radically new intelligent callipers are made by Dutch manufacturers. Ambroise Holland bv. They supply orthoses and prostheses for both upper and lower limbs and are gradually penetrating the UK market.

 

I was lucky to have been chosen to try the new style caliper but, have to admit that, when I saw the first sample I thought, “you must be joking!” However, the proof has been in the actual wearing and my orthotist has asked me for my comments. As I am not familiar with the correct medical terms, I hope you will excuse my ‘layman’s words’.

 

I contracted Polio at the age of 6 and will be 59 next year. I do count myself fairly lucky, the Polio affected only my left leg, although my thigh,

 

knee and ankle muscles were greatly weakened.

 

In these 53 years have seen little change in caliper design until the production of the cosmetic version. I have been wearing a partial cosmetic model for a few years and have found it lighter and more comfortable than the earlier design.

 

However, this new design from Ambroise Holland is totally different. It’s so light I can lift it with my little finger, yet it still gives me the same support as my old model!

 

The main difference is in the frame. With only one side support, with a strong spring at the ankle, have much greater flexibility when walking, especially up and down slopes.

 

In the past I have always worn a leather knee cap – with this new design there’s no need. Instead of the main cross bars being at the back, they are at the front with an easy, secure, velcro fastener at the back. The old, bulky, knee release cable has been replaced by a small button at the top of the side support. It doesn’t get caught up like the old style and it is so easy to use.

 

I also suffer from hyper extension of the knee, a common problem for Polio patients and this new style caliper helps stop this happening.

 

This new caliper sits much closer to my leg, with the knee joint level with the bend of my knee. Not only is it much more comfortable, there are no protruding bars to wear holes in my trousers, which was a big problem with the old design.

 

It is still very new to me at the moment, but I wanted to share my experience with you. I know this new design is not suitable for all types of disability but, do ask your local orthotist about them. Their Managing Director and Chief Clinical Advisor, Ken Spooner, has been extremely helpful to me throughout. I have included a picture of the ‘right leg’ style, which I hope can be clearly reproduced in this news sheet. [Note. The illustration at the top of this article in the Web edition of

 

this newsletter is sourced from the Ambroise UK Ltd web site and is not the original picture supplied by Maggie.] I hope my letter has given you an idea of how delighted I am with ‘my new leg’!

 

October 2005 Update. Ken Spooner and Ambroise UK Ltd are no longer the UK contact. The UK supplier for UTX is RSLSteeper and their web site has full details of the UTX. According to their web site “for information on our range of orthotic services and products, please contact Mark Tomlinson on 0113 2070435 or email mark.tomlinson@rslsteeper.com“. The Dutch manufacturer’s web site can be found here (primarily Dutch language).

 

NB. – Len, whose story is next, like Maggie is very impressed with his Utx. Much to my surprise

 

as I had not put a caliper in my near-future needs, I will be fitted with one later this month on my weakening left leg. Orthotists are interested in the benefits of using this lightweight revolutionary caliper and other members are now being assessed. Please write and tell us how you get on with any new aids or treatment you receive so that other Polio Survivors can benefit from your experiences. Hilary.

LEN’S STORY.

 

I have decided to put pen to paper (or fingers to the keyboard) and spill the beans on some good progress I have made during the last year in trying to live with PPS in a more positive manner. I contracted Polio in 1957 at the age of 16 months in a remote part of South Africa. My story is not unlike most, from the initial paralysis in my lower body, the recovery, a number of surgical procedures to finally discarding my legbrace.

 

I have been a “driven” person all my life and was fortunate to have had major business successes. I was hardly 40 and invincible and had not been back to see a Doctor re polio for over 23 years. Over a period of almost two years I picked up disturbing changes in my health:

 

1. I fell down in our bathroom at home and broke some ribs when I crashed into the hand wash basin… My right leg just gave way and that was the beginning of many. I became more concerned when one day I was walking around my car to get into it, when my leg gave way and I fell in front of an oncoming car. When I heard the screaming brakes stop I found one of the front wheels inches away from my nose. All of this was beginning to get to my confidence.

 

2. Over a period of time (the creeping effect) I had more aches and pains. This was at first only muscular and joint pains. Then came the agonising cramps/spasms. I had days where I could not breathe properly due to spasm of my diaphragm. Sonya, my wife, using her very best persuasive tactics, got me to see an Osteopath. When I saw Phillip the first time, he was actually appalled at the ‘state’ I was in. Shortly after my first visit (October last year) I hit the Polio Wall.

 

3. All my working life I woke before 5a.m. and was at my office by 7a.m. Leaving before 7p.m. was unthinkable. During my early career I would work 17 hours a day for a month during projects. I would never tire. I would normally sleep between 1-2a.m. and 4.45a.m. which was all I needed.

 

October last year this all changed rather abruptly. No warning at all. I was now fortunate if I got past 11a.m. each day. I had to stop driving myself as I fell asleep a number of times on the M25 doing 70mph! I now had severe physical and mental fatigue. I was scared out of my wits. I thought at first that my “mind” was going. I could not remember what I did and said barely hours earlier. Names, incidents, facts I have known all my life suddenly became a challenge.

 

I now KNEW that something was wrong. No, I knew earlier and in retrospect… I finally ACCEPTED that something was wrong. Therein lies the difference! Once I accepted the fact, being my normal driven self (about the only thing left at the time), I planned to do something about it.

 

I went to my GP and she referred me to a neurologist. An utter waste of my time and NHS funds. I fired him! At this stage I suspected it might have some connection with my Polio. I used the Internet. I typed in the word “Polio” on Yahoo and I found reference to PPS. The only UK reference I found was that of the Lincolnshire Post Polio Network. I spent days researching and learning. With the exception of respiratory problems, the basic list of symptoms described my situation to the Big T.

 

I felt so elated, I now had control as I had something to follow up on. What a bad mistake. I now hit

 

the second WALL. Those of you who know me well, will know that I see red when I get onto this subject. The general ignorance I could deal with, but the smug attitude of “I am the Doctor and you just the mere patient and what do you know” had me desperate. Our supposed one-stop-shop Centre of Excellence, The Lane Fox Clinic finally stripped me of all hope of getting help in the UK. Because I believed, rather naively (as one would) that Lane Fox would help me move forward yet they were in my opinion a waste of time and yet again NHS money. This had me feeling down for a short while, that is until Mama Hilary (oops she was not meant to know) said something that made me realise that I am the best person to look after and fight for myself.

 

I have since then taken to a power chair at work. I now manage to last until 3p.m. before I leave my office. This has singularly been the best move I have made even if it cost £6,000 from my own pocket.

 

I have also started using the Utx KAFO from Ambroise UK Limited shown on the previous page but I have the version with the intelligent knee lock that is locked as I heel down and unlocks as I toe off so that I walk normally. I dreaded this but as it turned out it has become a “friend” and on two occasions when I wanted to have a break from it over week-ends, I lasted no more than two hours and I put it back on. I am sure mine is the same story as with others. “If only I knew” what difference the brace would make, I would have had one earlier. Rather than restrict me, the brace has made walking, standing and driving easier!

 

Where to from here? I simply do not know. What I know is that I regularly have spasms that hurt badly and at times I struggle to breathe because of it. What I know is that I cannot work 5 days per week any longer. What I do know is that I am planning to speak to my MP and present a case that the NHS neglects me. I feel entirely isolated from it.

 

In the mean time I am having a battle with my local authority, the Royal Borough of Windsor and Maidenhead. They will not let me have an Orange Badge unless I have been successful in my application for DLA. It is bizarre that I am being forced to take money from the State in order to get the Orange Badge. I know of many local authorities that will provide this without DLA yet mine insists that it is following guidelines from the State.

 

Len Van Zyl

 

lvz@compuserve.com

 

Hints for hygiene – or The Fanny Pack

 

by Maggi Barwick McElroy.

 

For years I took for granted the fact that I popped into the shower every morning, wafted a flannel over relevant parts in the evening, sprayed a little of this and rolled on a dash of that here and there, now and then, and went through life, fresh as a daisy.

 

It took me YEARS to acknowledge to myself, let alone to a close friend, never mind mentioning it to a doctor, never dreaming of talking about it openly — to say that I now find keeping myself clean and sweet-smelling a struggle.

 

The late effects of polio has meant that I don’t walk (no fresh air getting to the private parts); I use an electric wheelchair (plastic seat); my arms are weak (so I have difficulty getting my hands, with a soapy flannel and then with plenty of rinsing water to the delicate bits).

 

And more often than not, I’m too tired to manage a thorough bath or shower, anyway. Don’t worry , you can come near me without a face mask on – I won’t suffocate you with my stink!

 

But, I DID have to face up to the possibility that if I didn’t examine this problem and find solutions, I was going to feel pretty grotty and less than socially acceptable.

 

And here are the results of MY problem-solving exercise, given to open up the subject and encourage other people to present their tips for getting round similar problems, and perhaps to pose problems that they are having to which someone else might have a possible solution.

 

First: Pacing. Pacing. Pacing… (Oh, how often do we “post-polios” hear that?) I realised that I could wash a bit of me at a time and dress a bit of me at a time.

 

Second: I found the best place to wash – and it wasn’t the shower or bath. For me, sitting on the loo, with the handbasin beside me, is much less tiring than the effort of getting into the shower. I also need some assistance with the shower, but I can wash myself when I’m sitting on the loo when I want to, and do as much or as little as I can manage at a time.

 

Third: Interesting cassette tapes to play whilst washing – so I can sit and rest in between washing my armpits and washing my bum and feel as though I’m doing something constructive. (I get novels on tape from the local library, and the occasional opera and improving tape – a bit of positive thinking does a lot of good.)

 

Fourth: Soap isn’t the only thing for washing. I’ve now settled on using Clinisan wash cream in place of soap. It is used in hospitals, is very mild, is slightly deodorant and – importantly – it won’t be the end of the world for your skin if the last bit isn’t rinsed off. I just put a small handful on what I delicately refer to as my “front bottom”, leave it for a bit, and wipe it off with a wet flannel. I don’t need to use a scrubbing action, which my hands/arms just won’t permit.

 

Fifth: Deodorant. Yes there are things that can be safely used on delicate female bits. I used to use Femfresh Spray, but didn’t find it enormously effective. I now use a product that I actually sell (as a health and beauty consultant) as part of a dental care range… It is called Eliminator and it is an alcohol free mouthwash (“and all-purpose odour control” – it’s American.) It’s as safe as houses, everso gentle – I’ve even used it on skin that has eczema on it – and stops even dire pongs in their tracks. (A friend of mine – a pub landlady – uses for her smelly feet and says it works where nothing else does.) I don’t use talc (a gynaecologist friend says it causes so many “down there, doctor”

 

problems), but Vagisil powder is talc free and I waft it all over anywhere that I might feel sweaty. Sixth: I sit on thick cotton towelling on the wheelchair seat, not plastic or nylon, and change it often. (Just an ordinary towel)

 

Seventh: Cotton knickers – when I wear knickers… Yes, admission time. It is often easier NOT to wear panties, particularly if I’m wearing ski-pants as it is one less thing to pull up and down. However – I wear COTTON ski pants, as cotton next to the skin is an absolute essential.

 

Eighth: I think it is about time I stopped! Product details are as follows: Clinisan can be got on prescription (save money if you have a prepayment certificate or don’t have to pay charges) and/or can be got from your chemist, though they will probably have to order it. Femfresh and Vagisil are also available from a chemist, but not on prescription. Eliminator is made in the States by a firm called Neways and is a sold by distributors (a bit like Avon is). If you can’t easily get hold of it, we can provide it by mail order: Collective Ability, 194 Cator Lane, NG9 4BE, UK. Email collective.ability@ic24.net Tel: 0115 916 6453.

 

Oh – there is a ninthly: I’d value comments and additions to the issues and solutions we can support each other with. Remember – there are no problems, just issues awaiting solutions!

 

Maggi Barwick McElroy

 

<collective.ability@ic24.net>

 

A Post Polio Christmas

 

by Bob Lantrip

 

When I was asked to write something “Christmassy” for this newsletter, I did what I usually do and took a few days to think it over. I always like to make a mental outline before I commit anything to paper. Since, as a Polio survivor, I’ve been adapting to things all my life the question I kept asking myself is how have I adapted Christmas to fit my life as a post polio? Much to my surprise I discovered that I hadn’t done Christmas any differently than most others, until 1997.

 

After our children were born, we adopted the habit of driving the 100 miles from our home in Texas to my mother in law’s home in Oklahoma on Christmas Eve and then driving another 75 miles on Christmas morning to my parents house, leaving there just in time to arrive back home, put the children to bed, and get rested enough to return to work the next day. Even after we moved from Texas back to our hometown in Oklahoma our Christmas routine remained the same.

 

But, after spending most of 1997 clearing 5 acres of land so we could move into a new home in the country, I was hit hard by Post Polio Syndrome and decided it was time for everyone to start coming to us for the holidays. My father had long since passed away and my mother had remarried and moved several thousand miles from us, so we informed my mother in law, children and grandchildren, that from then on Christmas Eve would be spent at our house and they could spend Christmas Day with their other families. I also told my wife, Sue, that we weren’t spending time or energy cooking for everyone. Instead we bought a meat and cheese tray from a local deli and let everyone make sandwiches as they wanted. My daughter even came out a couple of weeks earlier and helped Sue decorate. I was determined to make this the easiest and most enjoyable Christmas Sue and I had ever had.

 

On Christmas Eve our house was invaded with children, grandchildren, spouses, girlfriends and boyfriends. Before the evening was over we had 14 people visiting. I was able to talk my oldest grandson into handing out the gifts and my daughter into acting as the family photographer. I spent the whole evening in my wheelchair, sans braces and crutches so I could be comfortable and both Sue and I were waited on hand and foot by our grandchildren. We both had a wonderful evening and even though I stayed up later than usual, I went to bed almost pain free and was able to rest comfortably all night. The next day, everyone went their separate ways, just as we had planned, and Sue and I spent the whole day lounging around in our new gown and pyjamas that our daughter had made for us.

 

So, a new tradition was born in the Lantrip family simply because I decided it was time to adapt my life for PPS. Last Christmas we did the exact same thing, only with the addition of a new great grandson, and plan to spend Christmas in exactly the same manner for the rest of our lives. Even though PPS is making most of us change our lives to fit this new headache, those changes can be positive ones if we make up our minds to make it so and if we have the co-operation of our loved ones.

 

Robert M. (Bob) Lantrip http://home.earthlink.net/~blantrip/

 

Currently Unavailable

 

mailto: blantrip@earthlink.net

 

Three Wise Women….Think what would have happened had it been been Three Wise Women instead of three Wise Men.They would have: asked directions, arrived on time, helped deliver the baby, cleaned the stable,

 

made a casserole, and, brought practical gifts.Author Unknown.

Some Dietary Advice by Jann Hartman Polio Survivor and Nutritionist

 

Some very wise women that I was fortunate enough to meet as a young mom summed up their nutrition advice into one easy to remember sentence: “Eat a variety of food in as close to their natural state as possible.” That made a lot of sense to me them, and it still does. When I first studied nutrition in high school there was the Basic 7; then in college there were the Four Food Groups; and finally, we ended up with the Food Guide Pyramid. They all cover the same variety of foods all our bodies need each day, and basically the only difference is in how the fruits and vegetables are grouped or divided up. But, all these years later, natural and fresh is still the best!

 

Try to get as many fresh fruits and vegetables into your meals as possible. Take advantage of the many fruits coming in to season, not to mention all the fresh vegetables. Have an orange for breakfast. Eat an apple for a snack. Toss a salad to eat with lunch. Raw vegetables (with a low fat dip) make a nice snack. Two vegetables are recommended for supper. And, you can’t beat a banana (dipped in peanut butter) for an after dinner snack, if you need one. It’s pretty easy to get the recommended five servings or more of fruits and vegetables. And, if you have access to organically grown food, you are indeed lucky. Eat as well as your budget will allow. Your health and well being is worth it.

 

Eat beans and other legumes (all kinds of dried beans and peas). They are fiber rich, and are generally health promoting. Most of us dont get the recommended 25 to 35 grams of fiber a day. Add legumes (like cooked lentils) to rice dishes, soups and salads. Many of the whole grain cereals are good sources of fiber (but check and compare labels). Try whole grain breads with rolled oats, whole wheat, rye, and graham flours.

 

Soy products are a good addition to any dietary plan. Tofu is great, if you know how to prepare it. Since tofu is very bland, it is best used in recipes where it will pick up flavors: try adding some tofu chunks to your tuna salad. Yummy! Tofu can be used in many ways: in shakes with red, ripe strawberries or in a cheesecake in place of the cream cheese. Soybeans can be substituted for beans in any recipe, and they are the only bean that provide complete protein. Dried soy granules (textured vegetable protein) can be reconstituted with water or tomato juice and used in meatloaf, chilli, or spaghetti sauce. You can buy ice cream, cheeses, and a variety of meats (from sausage to bologna) that are made with soy; and soy milk is available, too. Try it, you may like it!

 

Drink plenty of fluids. 64 ounces of filtered water (or other fluids) is recommended each day. Get in the habit of sipping fluids throughout the day. Keep a sports bottle of water with you. If you really can’t stand plain water, try adding a little lemon or other fruit juice just for flavor. If you add sugar, or drink a sugar beverage, you are adding calories, and they generally don’t quench thirst as well as water does. Beware of all kinds of sodas, either regular or “diet.” They provide empty calories and chemicals that your body doesn’t need.

 

Consume less animal fat. Remove all visible fat from meats, and take the skin off all poultry before cooking. Look for and use vegetable oils. All fats are high in calories, so use them sparingly, but use them to add flavor where necessary. Nuts and avocados provide valuable nutrients that can be part of any nutritious and delicious meals. Unsalted nuts make a great high protein snack.

 

Be sure to include a good source of calcium in your meals. Many people drink milk, but whole milk and even 2% milk contains a lot of fat. Try the lower fat dairy products: skim milk, low-fat yogurt, and low-fat cheeses. Or, try soy milk in your cereal. Eat dark green, leafy vegetables for extra calcium. Drink a glass of calcium enriched orange juice. And, if you don’t get enough calcium each day, you need to ask about a calcium supplement.

 

• “Boost” vanilla flavor, with a scoop of ice cream, blended fruit, for improved flavor.

 

• Try “Carnation Instant Breakfast” with or without additions…

 

• Freeze a protein supplement and eat with a spoon.

 

• “Ovaltine” added to milk or supplement for chocolate malt flavor. “Ovaltine” has added

 

vitamins, not in chocolate drink mixes.

 

Try to maintain a healthy body weight. But, opt for healthy eating habits rather than strenuous and often dangerous fat diets if you need to lose weight. Strive for healthy lifestyle changes that you can live with each day. Make changes slowly: one at a time. Best advice I ever heard was: “Throw out the scales, and learn to eat well!”

 

Jann Hartman,

 

JKH <jann@HOME.COM> Baltimore, MD, USA

 

Cranberry Relish Recipe

 

• 1 bag fresh cranberries, washed and berries with soft spots discarded.

 

• 1 navel orange, preferably organically grown since you use the peel and all, cut into chunks.

 

• 1 apple, ditto the organically grown bit, cut into chunks.

 

• 2/3 to 3/4 cup sugar depending on sweetness that you like.

 

• 1/2 cup chopped nuts, walnuts are good, almonds are OK too.

 

In a food processor put half the cranberries, 1/2 an orange including peel, 1/2 apple, 1/4 cup chopped nuts and about 1/3 cup sugar. Process until you get uniformly small bits. Remove to a bowl. Put remainder of cranberries, orange chunks, apple chunks, nuts and sugar into processor and whiz till you get uniform small bits. Combine with previous batch and taste for sweetness. Add more sugar if necessary. Best made several hours (or a day) before serving. Keeps well in the fudge for 3 to 4 days. I think you can freeze it too, but I’ve never tried this. My daughter tells me you can use previously frozen (thawed) cranberries but the texture will be more moist.

 

Marcia Falconer <ddf@sce.carleton.ca>

 

Dear Santa:

 

I’ve been a good mom all year. I’ve fed, cleaned, and cuddled my two children on demand; visited the doctors office more than my doctor; sold sixty-two cases of candy bars to raise money to plant a shade tree on the school playground; and figured out how to attach nine patches onto my daughter’s girl scout sash with staples and a glue gun.

 

I was hoping you could spread my list out over several Christmases, since I had to write this letter with my son’s red crayon, on the back of a receipt in the laundry room between cycles, and who knows when I’ll find anymore free time in the next 18 years.

 

Here are my Christmas wishes:

 

I’d like a pair of legs that don’t ache after a day of chasing kids (in any color, except purple, which I

 

already have) and arms that don’t flap in the breeze, but are strong enough to carry a screaming toddler out of the candy aisle in the grocery store.

 

I’d also like a waist, since I lost mine somewhere in the seventh month of my last pregnancy. If you’re hauling big ticket items this year I’d like a car with fingerprint resistant windows and a radio that only plays adult music; a television that doesn’t broadcast any programs containing talking animals; and a refrigerator with a secret compartment behind the crisper where I can hide to talk on the phone.

 

On the practical side, I could use a talking daughter doll that says,”Yes, Mommy” to boost my parental confidence, along with one potty-trained toddler, two kids who don’t fight, and three pairs of jeans that will zip all the way up without the use of power tools.

 

I could also use a recording of Tibetan monks chanting, “Don’t eat in the living room” and “Take your hands off your brother,” because my voice seems to be just out of my children’s hearing range and can only be heard by the dog.

 

And please don’t forget the Playdoh Travel Pack, the hottest stocking stuffer this year for mothers of preschoolers. It comes in three fluorescent colors and is guaranteed to crumble on any carpet making the In-laws’ house seem just like mine.

 

If it’s too late to find any of these products, I’d settle for enough time to brush my teeth and comb my hair in the same morning, or the luxury of eating food warmer than room temperature without it being served in a Styrofoam container.

 

If you don’t mind I could also use a few Christmas miracles to brighten the holiday season. Would it be too much trouble to declare ketchup a vegetable? It will clear my conscience immensely.

 

Author Unknown,

 

Forwarded by Mary-Lou Whitaker

 

<Mary-Lou.Whitaker@kinfolk.org>

 

Lincolnshire Post-Polio NetworkIf you have or get an email address then please let us knowso that we can send your information onOur free to all Email updating service of additions to our WebSite andMembers Only “Polio-Network-Lincs” Discussion List

 

Sylvia Dymond – a member from Hampshire is often in touch. She is now 65, catching polio at the age of 15. She was in a Milwaukee Brace for 2 years following her polio and has been having problems since 1991 as her body – shoulders to hips is failing her. Trying to get appropriate medical help for her deteriorating condition has been extremely difficult and continually frustrating which has impacted on the rest of her life. She has had to resort to finding her own therapists and buying aids and equipment. Even with all this she rarely fails to include a funny story, or hint that might be helpful in her phone calls and letters.

Sylvia from Hampshire writes

 

I can only have one hours help instead of two on Christmas Day as there is a shortage of care help available. Do you think I should be clean and have turkey soup or stay dirty and have Christmas Dinner? Hilary told me about only needing to wash the bit that the Doc was going to see and it reminded me of the time I wore some new knickers for a doctors appointment and after the examination the doctor said would you like the price sticker back… £1.99 stuck on the side of his

 

hand.. !!!!! Yes, it was some years back.. you can only get half a knicker for that now.

 

As I did not seem to be getting anywhere with the medical profession I decided to organise things myself even though it means paying privately out of my benefits. I found an excellent Body Orthotist – Sylvia Foster – who has made me body supports and some comfortable bras. She has told me that I should have had these years ago. However, I must not sit up for too long even in my body support as its tiring and I still have to pace and rest. Another thing I purchased is an adjustable massage bed from Bakare. To get onto the bed I have it at bottom height and sit on it, then I take it down low so that I can get my legs on, then back up again, and I am fairly comfy. I use the massager to relieve aches and pains. If I did not have this bed I might have to have to stay in bed till a carer came. I also bought an electric rise leg raise chair. These items have given me more control of my life. All I have been given by the NHS is an electric wheelchair. If only the doctors had listened to me back in 1991 and I had had these items earlier then I am sure I would not be so disabled now.

 

Although I seem to have more and more problems as I get older and older, I would feel so much happier if I could be seen by someone who really understood.

 

I listen to relaxation tapes or find some music or a radio play to listen to, I rarely hear it all but it helps relax me and diverts my thoughts. Local Radio is especially good when it’s on specialised subjects and I love the late evening Phone-Ins and have been on a few times. I even got some new members for the LincsPPN. Radio is great for keeping my mind off niggling worries and waiting for my pain killers to work. I was listening to the radio a few months ago and heard that people who had polio can have Viagra. I did laugh as I wondered where we would get the energy from to make use of it. When watching TV I often turn my video on as well. This is a good idea in case you nod off or miss something, you can just wind it back. I have my phone set to answer machine in case I can’t get there in time, and tell all my friends to please leave a message, don’t just ring off.

 

I have my bed in my lounge next to my kitchen and bathroom – it’s not ideal but as I have poor cold tolerance it saves me heating an extra room, and everything is round me. I always rest when my carer is here to do my meals so that I have the energy to eat it. I have also just been for Respite Care and they collected my bed which made the stay much nicer and the staff were very keen to hear all about my polio and photostated lots of the information that I had taken in with me. One carer’s father has polio and he came and visited me just before I left to say thankyou and told me he had had a long chat with Hilary on the phone and she had sent him some information and the book Dr. Halstead has edited, Managing Post Polio.

 

I have found that being in touch with other polio survivors by letter and by phone has really helped me. It’s so nice when you say, this is hard for me and you get a reply from someone who truly understands. You get to be the talker and the listener and you can share funny stories and tips that might help. Instead of taking the carton of milk/juice out of the fridge and pouring some into a mug and then putting it back, take the empty mug and stand it in the fridge door next to the carton and you only have to tip the amount in you need.

 

If anyone would like to write to me then please send it do the LincsPPN address and I will write back.

 

Wheelchair and Car Neck Cushion idea.

 

Linda Myers, Virginia <myersl@EROLS.COM>

 

I’ve found a wonderful trick that makes my Jazzy (make of electric wheelchair) even more comfortable than before and eases my rib pain. found a pillow that is about 6″ in diameter and about 15″ long. The cover is gathered at each end with a shoelace. I could tie the ends together and slip the pillow over the headrest of my w/c and I also got one for my van. Now my headrests are really

 

headrests, not just something too far back to be really useful. See if you can find pillows like these, or take any round pillow or foam of this size and make your own cover, It’s absolutely amazing how much less painful my ribs are when my head is really supported. I adjust the pillow so that my head hits it right at the bottom of my skull and top of my neck.

 

You won’t believe the relief that comes from truly supporting your head.

 

PS – A Draughtsman’s chair can be useful in the kitchen.

 

Those dreaded multi page forms.

 

Hilary <linpolio@legend.co.uk>

 

I received my Disability Refurbishment Grant Form. Umpteen pages of questions and 5 pages of notes. I started to read it, technical jargon, and more financial information for another organisation. I will be honest I burst into tears. My daughter arrived home soon after and could see that I had been crying. She picked up the form and said “I will fill this in for you.” Before I had time to say that I could do it myself etc., she started. Name, Address, Date of Birth, Age… Scanning through the pages of the form she asked, “How old are you mum?” “52,” I replied. She wrote and said “52, and 63 by the time I get to the last page of this form.” Well I laughed, in fact I got the giggles. Instead of stopping her I let her carry on. She turned the page over and read “glebe of an ecclesiastical benefice” “Oh why can’t they use plain English! What on earth does that mean?” She turned to the relevant note and said, “Well let’s assume you haven’t got this because I am still none the wiser.” On she went through the form. “Do you have an in-valid carriage?” “What on earth is that?” “Invalid not in-valid” I say through my giggles. “Are you going to do the work yourself? Oh yes my mum is going to go up the ladder in her scooter.” She got more and more uptight and all of a sudden I realised that she had taken the sting, the pain out of this form.

 

Here was I laughing not crying. So when one of these arrives, why not get a family member or friend to go through the form with you in the first instance. It’s not giving up your independence and capabilities if it takes the initial sting out of answering all those questions for the umpeenth time, and allows you to go through the form afterwards seeing it in a different light.

 

Turn CD’s into Decorations.

 

Sent by Jann Hartman, Baltimore.

 

Neat idea for those CD-ROMs like the ones from on-line services many of us have received. You can glue two together with the printed side in. They make unique gifts as they reflect all those pretty Christmas lights.

 

To make: Take ribbon and make a loop, glue it to the printed side of one CD then glue the printed side of another CD to the CD with the loop. (Be sure the loop is large enough to hang on tree limbs.) Then take photos of the kids, grandchildren, the pets and cut them into circles just large enough to cover the clear circle and hole in the CD. Do the other side with another photo. Or, you can use old Christmas cards if you don’t want to cut up your photos…

 

Carers

 

by Kathleen Perkin

 

Taken for granted, many work a 36 hour day. Carers do not apply for the position of being a carer and they do not need to pass examinations or go to university. There is no age limit, and carers can

 

be as young as 5 years old. Recently research showed how many children of school age and under looked after a parent, not just as a one off, but day in day out, till something gives way, and then they cry for help.

 

There are many different aspects of caring and changes in lifestyle and relationships are large issues. To help carers cope with these changes in lifestyle there is an organisation called Carers National Association (the Voice of Carers). CNA have offices in London, Scotland, Wales, N. Ireland and N. England. They have a Carers Help Line Mon.-Fri. 10am-12md. & 2-4pm. Tel: 0808 808 7777 so give them a chance to help you. Carers Christian Fellowship are also there to help, and can be contacted in Cumbria on 01229 585974. Do not try to be a carer alone, do ask for help, even a little help and a chat with someone who understands does ease the load. Best wishes for the future and remember, do ask for help.

 

“G.M.C. Perkin.” <gperkin@cableinet.co.uk>

 

Accessible Kauai

 

by Marcia Falconer

 

We’ve just returned from a 10 day trip to the Hawaiian island of Kauai. It was a business/vacation trip – business for my husband, Dave, and vacation for me (and a bit for him too). Tropical paradise sometimes feels out of reach and this is made even more so by the need to consider accessibility problems. But don’t despair! Kauai is attainable and (reasonably) accessible!

 

Before you rush out to purchase discount tickets to explore Kauai, I’d better tell you where my perspective about accessibility is coming from. I had polio at age 7 and recovered completely. PPS appeared in my right arm about 1985 followed by drop foot in my right leg and serious fatigue in 1990. With some difficulty and reluctance I’ve learned that mobility aids minimize fatigue and pain and compensate for muscle weakness so I’ve begun to use them. I wear an AFO, or when I need to stand for long periods or my quads are very weak, I wear a KAFO. I use a scooter for shopping and other ‘long distances’. This summer I discovered that forearm crutches are useful for balance when I am fatigued. When we travel, I use a manual w/c that is mostly pushed by Dave.

 

Accessibility on flights departing from any major city to Honolulu is no problem. Airports can be another matter. Arm weakness prevents me from propelling me w/c any great distance so Dave has to push me in the w/c while coping with our luggage, his laptop computer (vital on a business trip), carry-on bags. To transit an airport requires he have at least 3 hands, even after we’ve loaded me, sitting in the w/c, with the carry-ons and the heavy laptop. Sometimes Dave manages but he is finally learning that the easy way to do this is to use a porter!

 

Flying from Honolulu to the very small airport on the island of Kauai by either Aloha or Hawaiian Airlines is fine. In addition, when you fly with your own w/c they take your disability seriously and, if possible, will seat you in first class! Of course the flight is only 30 minutes long, but it’s a nice way to arrive. The small airport terminal on Kauai is open to the tropical trade breezes and right away you’re inundated with warm, humid air carrying smells of tropical flowers (and jet fuel). The ground around the airport is green and red – grass and dirt. All the Hawaiian islands have red volcanic soil and you’ll have red dirt packed into the treads of your w/c by the time you fly home!

 

We picked up our rental car at the airport and drove off to locate the B&B, ‘Alohilani’, I’d reserved on the Internet. Located near the town of Kapa’a, on the rainy side of the island. it was wonderful and the mountainous scenery with the ocean in the distance was magnificent. Unfortunately, like most B&Bs, it was not w/c accessible. However, if you describe your needs to the B&B owners (by email, phone or letter) they will try their best to accommodate you or help you find another place that is accessible for you.

 

To get to our private cottage, we walked down a short, flagstone path between huge tropical plants

 

(the kind that we only see growing in pots in a sunny window!) and climb a few steps. The cottage was partially built on stilts over a forested ravine, which meant that as we slept air carrying wonderful smells would drift over our heads from the open windows. Every night I lay awake sniffing the scents as they wafted past my nose – first a sweet floral aroma and then a heavy, dank smell that reminded of wet leaves with an unusual undertone. Just as I would drift off to sleep another scent would float through the room. Before dawn we were awakened by the sounds of the ubiquitous Hawaiian alarm clock – the rooster! There are wild chickens on all the Hawaiian islands and before daybreak the roosters do their best to establish their territories. The near and distant crowing goes on until sunrise but after the first few nights you learn to disregard the sounds, just like the natives do.

 

The next morning, following a breakfast of fresh papaya, warm croissants with guava jam and wonderful coffee, we headed off to explore the northern reaches of the island. Kauai is small, only about 60 miles in circumference, so getting from ‘here’ to ‘there’ isn’t much of a problem. Our hostess suggested that we stop at a Guava Kai Plantation on our way to the end of the road at Ke’e beach. Totally w/c accessible, it has a huge guava orchard where you can pick as many guavas as your heart (or stomach) desires, a small manufacturing plant where they produce guava jams, jellies and juice (free, unlimited tasting of everything!) and a small, but lovely tropical arboretum. As well as a friendly cat. We drank lots of free, fresh guava juice but placed reluctantly restrained ourselves in buying jams and jellies packed in glass jars that could break in our luggage.

 

We continued north to Kilauea Lighthouse and National Wildlife Refuge which has w/c accessible paths leading to spots where you can watch redfooted boobies (birds!) nesting on the cliffs across a small bay. Here, where the ocean currents supply plentiful fish and the high cliffs provide protected nesting grounds, all sorts of tropical birds can be seen. When we tired of looking at unusual wildlife we watched the crashing surf and the wind blowing through feathery green trees. At the right time of year you can watch for whales as well. We drove a short distance back to the main road, stopping at the Kong Lung Store. Formerly a general store for sugarcane workers, it’s now a wonderful ‘gift shoppe’ with beautiful things but not the kind I’d buy as a casual souvenir. Behind it there is a small bakery selling pizza and other delicious things for lunch. If this isn’t enough, there is also a small store where they make tropical scented candles and soaps. I couldn’t resist and bought a bunch of plumera (that’s a flower)-scented candles poured into coconut shell halves. The candles float when you put them in a big bowl of water and give off a fantastic aroma, reminding me, as I sit at home on a dark winter evening, of our trip to a tropical island.

 

Ten miles down the road brought us to the town of Hanalei. The nearby beach is where “South Pacific” with Mary Martin, was filmed! Most of the shops and restaurants in Hanalei are w/c accessible and people cheerfully (and unobtrusively) help with carrying food and drink to tables on the lanai (which is ‘terrace’ or ‘porch’ in Hawaiian). Most beaches, because of the problem with sand and wheels, are not w/c friendly, but in Hanalei there is a completely accessible pier that goes way out into the bay. From here you can look inland to the nearby mountains with sharply eroded ridges covered in lush vegetation. Bring binoculars to appreciate the ribbon-like waterfall that drops 2000 feet straight down, from the top of the mountain to the plains below. And bring a camera to record the local Hawaiian kids who dive off the pier and generally run around having fun. There is also a paved boat ramp, suitable for a w/c, where you can get down to the water edge (and probably go swimming if you want to – the water is lovely and warm).

 

To get to Ke’e beach, literally the end of the road, we drove over a narrow road with many, one-lane bridges. Waiting for our turn to cross the bridges we examined the local scenery and listened to the radio playing Hawaiian music. Granted that this type of music doesn’t travel well, and any tapes or CDs brought home will sound bizarre and out of place, nevertheless when heard while driving to Ke’e beach it is wonderful and entirely appropriate!

 

Not looking for anything in particular, we marveled over more waterfalls and incredible beaches that appeared at random as we drove. A parking lot with cars suggested there might be something of

 

interest to see, so we pulled into it. There was a beat-up old pick-up truck, loaded with fresh, yellow, smooth-skinned coconuts (not the brown, hairy things we see in our stores). A Hawaiian man, with a very large cleaver, was chopping off the tops of the coconuts to insert a straw so you could drink the ‘coconut water’ inside. Who could resist? We shared a coconut and drank the slightly sweet tasting clear fluid then took it back to him to be hacked open so we could eat the fresh coconut meat. Delicious, and not the time to worry about saturated fats!

 

Across the street was a ‘dry cave’. One of the natural sights of the island, it was a lava tube through which molten lava flowed a hundred thousand years ago when Kauai had active volcanoes. (Now the active volcanoes are only found on the southernmost island, Hawaii.) The entrance to the cave is shaped like a mouth, about 30′ high and 70′ across. The floor is hard-packed, uneven dirt and the ceiling is solidified lava with only a few, tiny, stalactites. I’m mildly claustrophobic but the cave held a strange power that drew me in. At first there were other tourists in the cave with us but by the time we’d reached the middle of the cave, Dave and I were alone. If you’ve ever wondered if the earth is ‘alive’, being in this cave will make you decide that it definitely is. As I turned around to look back towards the mouth of the cave, I had the feeling that the earth might decide to ‘close its mouth and swallow’ me. Still, I wanted to reach the back of the cave. Walking further into it, my eyes accommodated to the increasing darkness. At the back of the cave, where the throat would be, was a narrowing and then a blank wall. Although there were no signs of it, I felt that the ancient Hawaiians must have had an altar at this spot. We turned to leave the cave. Going out was as dramatic as going in. Now the bright light from the entrance essentially blinded me so that all I could see was the brilliant light at the mouth and all around me was blackness. The uneven ground meant that I had to go slowly and the presence of the earth all around was overwhelming. It was an awesome thing.

 

To be continued…

 

1. Kauai, Hawii’s Island of Discovery http://www.kauai-hawaii.com/

 

2. Hawaiian Airlines http://www.hawaiianair.com/

 

Travel & Transportation – Kauai

 

Marcia Falconer PhD and Eddie Bollenbach MA co-wrote the article “Non Paralytic Polio and PPS” featured in LincPIN Volume 2 Issue 3 February 1999 and on our WebSite at http://www.zynet.co.uk/ott/polio/lincolnshire/library/falconer/nonparalytic.html.

 

They are soon to have another article published. “Late functional Loss in Non Paralytic Polio” will be in the next issue of the American Journal of Physical Medicine and Rehabilitation. There will also be other articles on Non Paralytic Polio in this issue. Two we know about are one by Dr. Lauro Halstead and another by Richard L Bruno PhD. Both have many articles in the Lincolnshire Post-Polio Library. More information in our next issue.

 

N.B. – If you have been prescribed Mestinon/Pyridostigmine the following article will be of interest to your Doctor.

 

Medical article recently published Neurology 1999 Oct 12;53(6):1225-33 (Abstract only included here).

 

A multicenter, randomized, double-blinded trial of pyridostigmine in postpolio syndrome.

 

Trojan DA, Collet JP, Shapiro S, Jubelt B, Miller RG, Agre JC, Munsat TL, Hollander D, Tandan R, Granger C, Robinson A, Finch L, Ducruet T, Cashman NR

 

Department of Neurology, Montreal Neurological Institute and Hospital, Quebec, Canada.

 

BACKGROUND: Postpoliomyelitis syndrome (PPS) is likely due to degeneration and dysfunction of terminal axons of enlarged postpolio motor units. Age-related decline in growth hormone and insulin-like growth factor (IGF-I) may be a contributing factor. Neuromuscular junction abnormalities and decreased IGF-I levels may respond to the anticholinesterase pyridostigmine, with consequent improvement in strength, fatigue, and quality of life.

 

OBJECTIVES: To determine the effect of pyridostigmine in PPS on health-related quality of life, isometric muscle strength, fatigue, and serum IGF-I levels; and to assess the safety of pyridostigmine in PPS.

 

METHODS: The study was a multicenter, randomized, double-blinded, placebo-controlled trial of a 6-month course of pyridostigmine 60 mg three times per day in 126 PPS patients. The primary data analysis compared mean changes of outcomes between treatment and control groups at 6 months using an intention to treat approach. Secondary analyses included a comparison of outcomes at 6 and 10 weeks, and in compliant patients.

 

RESULTS: The study showed no significant differences in pyridostigmine and placebo-treated patients with regard to changes in quality of life, isometric strength, fatigue, and IGF-I serum levels at 6 months in the primary analysis and in compliant patients. There were no differences in outcomes at 6 and 10 weeks between groups. However, very weak muscles (1 to 25% predicted normal at baseline) were somewhat stronger (p = 0.10, 95% CI of difference -9.5 to 73.3%), and in compliant patients IGF-I was somewhat increased (p = 0.15, 95% CI of difference -6.4 to 44.8 ng/mL) at 6 months with the medication. Pyridostigmine was generally well tolerated.

 

CONCLUSIONS: This study showed no significant differences between pyridostigmine and placebo-treated PPS patients on measures of quality of life, isometric strength, fatigue, and serum IGF-I. Publication Types: Clinical trial Multicenter study Randomized controlled trial Comments:

 

Comment in: Neurology 1999 Oct 12;53(6):1166-7 PMID: 10522877, UI: 99450712

 

Lincolnshire Post-Polio Library

 

Articles added since last newsletter with grateful thanks to the authors

 

Title: Changes in Post-Polio Survivors Over Five Years: Symptoms and Reactions to Treatments. Author(s): Mary T. Westbrook, PhD

 

Original Publication: Proceedings of the 12th World Congress, International Federation of Physical Medicine and Rehabilitation, Sydney, March 1995. Abstract/Extract: A group of 176 people with post-polio syndrome, identified using Ramlow et al’s (1992) criteria, took part in a 5 year follow-up survey.

 

Most reported increased muscle weakness (91%), fatigue (91%), muscle pain (80%), joint pain (64%) and changes in walking (60%). Increases in other symptoms occurred in less than half the group. Cramps, sensitivity to cold, muscle atrophy and muscle twitching were the symptoms most likely to have stabilised. The average respondent reported greater difficulty in carrying out 4 of the 8 activities of daily living investigated. Respondents were significantly less anxious and depressed about their condition at follow-up. Degree of post-polio changes reported at the time of the first survey was a better predictor of decline during the five years

 

than were initial polio histories or psycho-social variables. Health practitioners most likely to have been consulted were general practitioners and physiotherapists. Specialists in rehabilitation medicine were rated as providing more beneficial treatment than other medical practitioners. Treatments reported to provide good symptom relief included massage and water activities but not exercise. Life style modifications associated with pacing, reduced activity and rest were particularly effective. Overall 68% of respondents considered there was much they could do to control post-polio symptoms.

 

Title: Dr. Henry writes about “You Were There” Author(s): Henry Holland MD.

 

Original Publication: Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, in 1999.

 

Abstract/Extract: Do you remember the popular TV show of the 1960s entitled “You Are There” narrated by Walter Cronkite? The show would

 

typically allow the viewer to be an eyewitness to a significant time in history. Let me take you back to March 1954. Summer Polio epidemics had been spreading fear and terror across America and much of the world for several decades. In 1952, only two years previous, a record 60,000 cases of polio had been reported in the USA. Another summer was approaching, but finally, as reported in the news, there was hope for a successful vaccine. Much of the hope ironically depended on monkeys.

 

Title: Polio Biology VII – Holistic Polio

 

Author(s): Eddie Bollenbach, MA.

 

Original Publication: The Lincolnshire Post-Polio Library – 17th October 1999.

 

Abstract/Extract: On reflection, it is quite obvious that everything in the body works together. Put another way: nothing can happen inside the body

 

without an effect on all parts of the system. After reading some recent articles on nerve and muscle function I started thinking about Post-Polio Syndrome and how closely a skeletal muscle fiber and attached nerve work together.

 

Title: Polio Biology VIII – Post-Polio Pathogenesis Author(s): Eddie Bollenbach, MA.

 

Original Publication: The Lincolnshire Post-Polio Library – 27th November 1999.

 

Abstract/Extract: Ever since the writings of Copernicus we, in the Western Hemisphere, have used reductionism in our thinking to the extent that we think

 

problems must always have a single cause. So we say this, not that. And we seek until we find a single simple explanation. Nothing but a single understandable cause, it seems, will relieve the nagging uncertainty about what is going on inside our bodies. I don’t think things are this simple, especially inside the nervous system.

 

LINCOLNSHIRE ASSOCIATION OF PHYSICAL DISABILITIES Reg. Charity 106641710

 

Beech House, Witham Park, Waterside South, Lincoln LN5 7JH Telephone 01522 574186 – Minicom 01522 574190 – Fax 01522 534575 Email Steve.Tyrell@lincs-tecgroup.org.ukThe Lincolnshire Association of Physical Disabilities are looking to increase their membership. Full membership is open to anyone who is 18 years of age or older and has a disability.

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177

 

Articles for publication by January 20th – Publication date February 5th 2000 MEMBERSHIP for this financial year is £10.00 – includes 6 Newsletters Life Membership £100 – 20 x £5 per month All Membership fees now payable by Standing Order All donations will be gratefully received. All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840 Email: info@lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network 2000 – 2009.

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue08.html> Last modification: 27th April 2009.

 

Last information content change: 27th April 2009.

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 7 – October 1999

 

CONTENTS

 

Editorial by Hilary Hallam.

 

Lincolnshire Post-Polio Network – 2nd AGM September 4th 1999. Chairperson’s Report by

 

Lynn Hobday.

 

Welcome Message From Your New Chairperson – Christine Ayre.

 

Rescued to the rescue. Assistance dog partnerships can give a new lease of life both to the

 

disabled and to former rescue dogs. Marie-Noëlle Clifford – Dogs Today

 

Rambo the Ram by Christine Ayre Catley Abbey, Lincolnshire.

 

Travel to and with Hilary by Klaus Kunert.

 

A Personal Experience of the Condition known as Scoliosis Anne Proctor of the Scoliosis

 

Association UK

 

Disabled Person’s Parking Badge – Orange Badge – Information for Lincolnshire.

 

Dr. Sarah Smith – Patron of the Arachnoiditis Trust Asks how many Polio Survivors have had

 

problems following spinal injections?

 

and gives a short explanation of Lumbar Puncture and Arachnoiditis. Atypical Coughing and Hypoventilation Syndrome in the Polio Survivor. Deberah Nightingale.

 

Respiratory Failure in PPS – By Susan Callahan.

 

Hints, Tips & Bits from Polio Survivors worldwide.

 

Lincolnshire Post-Polio Library Articles added since last newsletter with grateful thanks to the authors.

 

The Post-Polio Institute “Protein Power” Diet Dr. Richard L. Bruno

 

Contact Information

 

Online Reading Navigation Tip – Selecting Cathedral logo will return you to the above contents.

 

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. ALWAYS consult your doctor before trying anything recommended in this or any other publication.

 

Editorial by Hilary Hallam

 

Following our second AGM – we had three speakers and many questions were asked and answered. We would like to take this opportunity of thanking Marcia Falconer PhD from Ottawa Canada, Dr. Paul Ballinger from Cannock in Staffordshire, and Dr. Betty Dowsett from Essex for giving us their valuable time. Sylvia Foster, the Orthotist who was to speak – with Colin Teferrelli – had an accident whilst on holiday in France and they were unable to be with us, but have offered to speak at another occasion. We hope that Sylvia is soon on the mend. We would also like to thank those members who travelled far to join us. Our two evenings at the Holiday Inn Express were spent talking about our continual and varied forays into the minefield of ‘getting a diagnosis and treatment’, amongst other allied subjects. This looks like very heavy discussion but there were so many laughs that we went to bed with our ribs aching.

 

Marcia Falconer PhD a virologist from Ottawa Canada and LincsPPN Life Member – our first speaker after the AGM – spoke about “Non-paralytic Polio and Post Polio Syndrome“. She described the categories that were used to classify the severity of the acute illness: sub-clinical, abortive, non-paralytic and paralytic, saying that these were not distinctive classifications but rather just arbitrary points along a curve with each category blending into the next. She emphasized that scientists had found the damage done to the motor neurons could be just about as severe in nonparalytic cases as it was in paralytic cases, just that the pattern of the damage varied. Considering this, it is not surprising to find that symptoms of PPS are found in people with a history of nonparalytic polio. She also talked about the criteria currently used to diagnose PPS including the use of electromyographs (EMG’s). Although a useful test, having a normal EMG should not be sufficient to rule out the possibility of PPS. She concluded by emphasising that a diagnosis of PostPolio Syndrome should not be exclusive to those with a history of paralytic polio.The talk was followed by a long and lively discussion period which was cut short only by the need to have lunch!

 

Dr. E.G. Dowsett, MB, ChB, Dip.Bact. is an Honorary Consultant Microbiologist with South Essex Health Trust and a LincsPPN member. In her long and varied career she has worked with patients with ME/CFS and has seen many Polio Survivors – including at least three of our members. She attended the AGM and following Marcia’s talk spoke for a few minutes. She said “Marcia’s talk has been very informative and she is correct in that categories of polio are names along the curve of Polio, and I look forward to long and interesting discussions with her but unlike many of you with your computers I am happy with my paper and pen.” She then went on to talk about the Lincolnshire Post-Polio Network. “I congratulate you on the professional way that you present your information which means that it is being read by health professionals. Your newsletters are full of medical articles from highly respected Polio and PPS specialists and you also include articles and information from Polio Survivors who share their experiences for the benefit of others. More importantly this comes from around the World – a most important line of communication. I am pleased to see members of the local ME self help group here as you have many symptoms in common. PPS and ME/CFS are not temporary problems, they will not go away. There are also other enteroviruses (other than polio) that can and do cause acute flaccid paralysis in the world today. There is a lot that can be done to manage your lives better and by making more information on Polio and its late effects available from one source you are saving busy health professionals time in searching for good quality information. I look forward to joining with you and helping you with this valuable work.”

 

Dr. Paul Ballinger MRCP, MRCGP, DCH, DRCOG – a GP from Cannock in Staffordshire who wrote the Case History of a Patient of his with PPS for Update – a publication for GP’s – was our last speaker. A very dedicated young GP who researched for information when a Polio Survivor patient

 

presented with new weakness to a polio limb. He talked about the difficulty that a GP has in having to change from condition to condition every five or ten minutes as patients pass through his surgery. It is not possible for GP’s to know all the latest information on all conditions and said that if we read all the information that arrives in the post then we would not have time to see any patients. He told us that in training many rare conditions are covered, but that he had not been aware that there were late effects of polio until he started to search for information. We had asked him to include in his talk how we could present ourselves and our symptoms to a GP so that the limited time available was used to best advantage.

 

Polio is not something that we know a lot about and you all seem to have many and very varied recovery levels, with many of you not visibly showing all the damage the polio virus did to your body. This makes a GP’s life very difficult.

 

He suggested that we provide as much information as we can on how we were when we had polio and how we recovered. That we diary our symptoms so that we can provide a summary. He also suggested that if we find a health professional who does not know about polio’s late effects that we give them copies of medical articles from peer reviewed journals. He seemed surprised that some of our members had done this and had them refused or even chucked in the waste paper bin. He answered questions on many different aspects of a GP’s work and the new PCG’s and his refreshing and honest replies gave us hope for the future.

 

The Falcon Inn Charity Truck Pull held on Sunday 3rd October raised over £700 of which we hope to get just over £500. This was 50:50 for us and the Team’s own choice of Charity. Five teams entered and despite the rain starting as the Pull started, all participants pulled hard determined to win. With supporters cheering on the side lines the winners were the Falcon Inn Football Team in a time of 21 seconds. Christine Ayre our new Chairman presented a Shield to the winners and certificates to all that entered. The Falcon presented each team with a bottle of bubbly. Other teams entering were the Falcon Inn, the Perfect Strangers, North Lincs College/The Still, and the Witch and Wardrobe. The Truck was supplied by Nicholas Weaver Transport and driven ‘back to the starting point’ by Lee Phelan. May we take this opportunity of thanking all those involved.

 

The Falcon Inn Football Team play in one of the oldest Lincolnshire Leagues. Team Manager is Nick Lebbon and joining him in the Truck Pull were Nigel Lloyd, Darren Ross, Carl Barlow, Paul Wright and Sally Holding. This is their first year playing for the Falcon Inn having moved from another Lincoln Pub. They adopted the Lincolnshire Post-Polio Network as their Charity and support the Falcon Inn in all its fundraising events raising £10 a week for us from their Bonus Ball competition. Thankyou guys, your efforts are well appreciated.

 

Neurological Support Group in Lincolnshire. This has been reformed and the first meeting will be held in early November at Lincolnshire Health Authority Headquarters. The format of the meetings has been laid down and we look forward to giving you more positive reports in future newsletters.

 

Are you on the Internet? – If you are on the Internet and have an email address then do let us know so that we can ensure you are aware of all the services we offer to our members.

 

Reminder – we tolerate some drugs and anaesthetics differently from non polio survivors. We provide leaflets on this and there are articles on our WebSite. If you are due to have any dental work or operation that requires any form of anaesthetic then look at the following articles on our WebSite or ring or write to us for a copy.

 

1. What you should know about your Medications – A guide for Polio Survivors UK version

 

J.M.Walker Ph.D., PT, AM Whelan, Phar. D. – Andrew Francis Forde MRPhami. B.Sc.Hons.

 

[Lincolnshire Library Full Text]

 

2. Be true to your PPS and your teeth won’t be false to you. Preventing complications in Polio

 

Survivors undergoing dental procedures – Richard L. Bruno, Ph.D. [Lincolnshire Library

 

Full Text]

 

3. The Knife is not so rough if… Preventing complications in Polio Survivors undergoing

 

Surgery. Richard L. Bruno, Ph.D. [Lincolnshire Library Full Text]

 

4. You are going to have surgery – A Guide for Polio Survivors – J. M. Walker, PhD, PT.

 

[Lincolnshire Library Full Text]

 

5. Polio Survivors as Patients – Guide for Emergency Care & Surgical Health Workers J. M.

 

Walker, PhD, PT, C. McGowan & G. Vardy. [Lincolnshire Library Full Text]

 

Reminder – to analyse how you do activities so you can show where you have problems in repeating or sustaining any movements. This will help those examining you to see the decline in muscle ability that is not evident on one off manual muscle testing.

 

PPS Conferences – November 13th 1999 in Atlanta, Georgia, U.S A.; January 19th – 22nd 2000 Victoria, Australia; February 19th 2000 in Boca Raton, Florida; March 2nd – 5th 2000, Richmond, British Columbia, Canada; May 19th & 20th 2000 Warm Springs, Georgia and June 9th – 10th 2000 in St. Louis, Missouri, USA. For more information see World Wide Conference & Seminar Diary on our Website or ring for more information.

 

Finally. This is your newsletter and we would like to hear from you. Let’s make the Christmas issue an LincsPPN members one. Have you any hints, tips or stories to tell, serious or funny? Tell us about the treatment or equipment that has helped you – tell us what you need but can’t get. Have you any old fashioned Christmas treats to share with our overseas members (or from our overseas members)? Weigh our postlady down with letters, she won’t mind.

 

Lincolnshire Post-Polio Network – 2nd AGM September 4th 1999. Chairperson’s Report by Lynn Hobday.

 

With pleasure I welcome you to the second AGM of the Lincolnshire Post-Polio Network and thank you for giving your time to be with us. Last year, I set out our aims and objectives and told you of the work already accomplished on behalf of Polio Survivors. Let us consider another aspect of our work.

 

Here I would like to add personal thought on our work. When one has a problem, no matter what that problem maybe, it needs to be shared. The old adage “A problem shared is a problem halved” is as true today as it ever was! That’s what LincsPPN does so well. It becomes a listener – and what’s more – a listener who understands!

 

We all know how difficult it can be to explain the many and various symptoms of the post polio syndrome. They are different for each and every one because so much depends on how we were affected when we first contracted polio.

 

However, to put it very simply, there are 4 stages for everyone.

 

1. Polio contracted and damage done.

 

2. Recovery up to a point and rehabilitation.

 

3. Making the best of what we have left and getting on with life.

 

4. Slow and inexplicable deterioration of muscle power and mobility. We all deal with these symptoms differently. Let me explain how I see it.

 

There is a song from the musical “Fiddler on the Roof” which begins, “Sunrise, sunset – quickly goes the day.” It tells of a father’s feeling on how quickly his children have grown from babies to adults – in the twinkling of an eye.

 

For me it sums up how quickly these problems have arrived. It seems only yesterday I was an active wife and mother, a full time professional worker with a very enjoyable social life. I would be hard

 

pushed to say exactly when this all changed. But change it did! I am now learning to live with Stage 4.

 

For many of you the experience may have been different – but what will be the same will be the frustration and anger at the indifference of the medical profession and the lack of will to help all of us cope both mentally and physically.

 

The Lincolnshire Post-Polio Network was formed to help polio survivors understand what was happening to our bodies, to provide information on where and how to get assistance, to link with the Establishment, to make our voice heard, to help medical professionals understand our needs – and through our WebSite on the Internet and our LincPIN newsletter, spread all this information worldwide. To the benefit of all Lincolnshire Post-Polio Network members and associates, we in return receive a current and relevant update on the work being done in other countries for polio survivors.

 

I do hope all I have said goes some way to explain the importance of our Charity to all polio survivors and why we must all continue to support this work in whatever way we can.

 

Now to the rest of my report covering 1998/1999.

 

Through the continuing efforts of Chris Salter, our Vice Chairman with specific responsibility for the WebSite, we have increased information available on our WebSite and this is being accessed world wide. This is vitally important work and although I have not met Chris because he lives in Cornwall. I am very well aware of the enormous input he has achieved on behalf of the Lincolnshire Post-Polio Network. My personal thanks to him for all his hard work.

 

Last year I told you that we were represented on the Lincolnshire Health Authority Neuroscience Group. I have to say now that in spite of attending several meetings, we have made no further progress in obtaining improved medical services for polio survivors in Lincolnshire. However, we have hopes for improvement in the coming year. With the help of the NHS Directorate in Sheffield, the Group is to be re-organised so our fingers are crossed for more positive action. We will keep you informed.

 

Our membership continues to grow. At present we have 29 Life members with 6 from overseas and 101 Members with 11 from overseas and memberships continue to come in.

 

These figures represent subscription paying members – a vital contribution to our funds. Many many more use our services – if they don’t wish to join then a donation would be most welcome.

 

This leads me on to funds. Still we do not have sufficient funds to do all we would like to do. More funding through grants and sponsorship would enable us to pay a part time administrator to relieve Hilary of some of the secretarial work, allowing her to concentrate more on giving talks and promoting the awareness.

 

Alison Hallam, Hilary’s daughter, the Assistant Manager of The Falcon in Saltergate, Lincoln, made us their Charity of the Year and £240 has been donated already. One of the events will be A Truck Pull on October 3rd. and we hope for good results. Anyone who can help to raise funds on our behalf would be welcomed – just talk to us today and share your ideas.

 

The newsletter, LincPIN, has continued to be circulated and its contents have been first class. Medical articles, personal experiences – both funny and serious, up to date information on equipment and Hilary’s trips to Polio Conferences abroad to see how they are coping have all added spice to keeping us well informed.

 

We keep in touch with the Lincolnshire Branch of the British Polio Fellowship and exchange information useful to all polio survivors. We continue to maintain close communication with the Leicestershire Post-Polio Network. They are holding their AGM here at Ancaster Day Centre and by combining a shared date it enables more of their members to participate in the program today. By using a registration list which show the location of members of both organisations, we hope that

 

together we can provide a link for services especially to those who live in rural and isolated spots. On your behalf I want to thank Hilary Hallam, secretary of the LincsPPN. It would be impossible to list the amount of work she does on our behalf. As a committee we put in our two pen’orth but it is she who makes things happen. To our committee, to our Treasurer Jean Tapper, to Christine Ayre and Phil Bilton, my thanks for your help and support throughout the year.

 

I am retiring this year as Chairman and take this opportunity to wish my successor good luck and best wishes for the coming year. To you all my best wishes for an improvement of quality of life and lots of laughs along the way.

 

The Treasurers Report was then given followed by a WebSite Report and Secretary’s Report. Voting then took place for the Officers and Committee.

 

Your new Chairman is Christine Ayre. Vice Chairman is Councillor Bud Robinson – who was with us as Mayor of Lincoln at our last AGM. Vice Chairman/WebSite Administrator remains with Chris Salter. Hon. Treasurer is Jean Tapper, Hon.Secretary is Hilary Hallam. Committee Members are Phil Bilton and Myra McManus.

 

Read this sentence:Finished files are the result of years of Scientific Study combined with the experience of years.Now count aloud the F’s in that sentence.Count them ONLY ONCE: do not go back and count them again. Answer at the end of this newsletter.

WELCOME MESSAGE FROM YOUR NEW CHAIRPERSON – CHRISTINE AYRE.

 

When I joined the LincsPPN committee some two years ago, I never dreamed that one day I would be Chairperson and following in the footsteps of such an able Chairperson as Lynn Hobday.

 

I am very much aware of the responsibilities of heading the Lincolnshire Post-Polio Network committee and also the need to further the cause not only of our members, but also to give information and support to our great family of polio survivors throughout the world.

 

When I started to experience new symptoms I found myself trawling round hospitals, visiting various consultants trying to get a diagnosis. One consultant even said I had Marfans syndrome and he did that within five minutes of seeing me and never got up from his chair; is that what is called medical expertise?.

 

To cut a long story short, after fruitless visits to hospitals I finally found an article in the “Saga” magazine telling of an illness called PPS, the rest for me was easy. I took the article to my GP and he agreed to help. If you have a good GP it certainly makes life a lot better.

 

Since that time I have worked to getting things that will help me manage my life better. Some are little things, such as lightweight saucepans and ironing board, a little vacuum cleaner so that I can at least clean up things I drop on the floor and some are large things like a scooter, stairlift, electric bed and a chair with a high seat. I also have a selection of cushions and foam pads which I use to prop up my arms when in a chair or bed.

 

Three years ago I went for the first time to Papworth Hospital to have my breathing evaluated and

 

although at that time I was alright, a year later I was told that I would need treatment in the form of a ventilator. This has changed life for the better. I now feel and I’m told look better. Also I sleep at night instead of the day and wake feeling refreshed and able to get through the day.

 

I know that some of you are still fighting to get recognition and treatment for PPS. This is very hard and depressing when you are faced every day with increasing levels of pain and energy loss. I also know polio survivors will go on fighting, we have been fighting all our lives, so why break the habit of a lifetime. If you have not already done so then please write and tell us of your successes and failures in trying to get your symptoms assessed and treated. I look forward to to hearing from you and maybe meeting you at the next AGM.

 

Christine Ayre <catley@tesco.net>

 

Rescued to the rescue. Assistance dog partnerships can give a new lease of life both to the disabled and to former rescue dogs.

 

Marie-Noëlle Clifford – Dogs Today

 

with permission of the Publisher and Managing Editor Beverley Cuddy.

 

Readers of the December/January issue [Dogs Today] will already be familiar with the work of assistance dogs. Alerting people who cannot hear alarm clocks and doorbells, supplying stability via a harness to the mobility impaired, picking up or retrieving objects and using doors, lift-buttons and other objects are tasks all cheerfully mastered by the well trained assistance dog.

 

Many organisations, especially Guide Dogs for the Blind, train dogs before partnering them with clients. However, unlike Guide Dogs, assistance dogs for the disabled can be trained at a later stage in life (18 months to two years). Many Labradors, Golden Retrievers, German Shepherds and suitable crossbreeds in rescue shelters are given a new life through retraining for this type of work.

 

Christine Ayre from Lincolnshire and her four-year-old Boxer, Ben, took part in agility and obedience trials until two years ago when Christine suffered post polio syndrome. This debilitating, progressive condition affects many former polio patients in later life. Fatigue, general pain, weakness in the limbs and respiratory difficulties restrict Christine’s activity.

 

When Christine was taken into hospital, it was the first time she had been separated from Ben for a whole week. On her return, she found that he needed time to adjust to her new limitations – and her new scooter. Ben had achieved Grade Five in obedience trials, and Christine was well-equipped to train him at home.

 

Boxing clever.

 

“Ben is always keen to help me out,” says Christine. “He understands that I cannot walk as quickly as I used to and will slow down, wait for me when I have difficulty and even help me balance, as he is such a big Boxer.”

 

Christine began training Ben slowly, allowing him time to investigate and familiarise himself with the strange machine. Then she trained him to walk beside the scooter without crossing in front or putting his paws under the wheels. Gradually they sped up, and now Ben usually runs on the verge alongside the scooter. Christine and Ben have coped well together, but Christine is sure that, with professional help and training, they could have achieved even more.

 

“Unfortunately, I have not been able to train Ben to retrieve items. When I attempted to get him to fetch the mail, he chucked it all in the pond with the frogs,” she says.

 

Christine had not considered assistance dog training simply because she did not know where to get

 

help.

 

Six years ago, Josie Goodison, from Rotherham, adopted a six month-old crossbreed called Scamp, from a rescue centre. She wanted a companion for her retirement. Josie also has post polio syndrome, and as her illness progressed she found herself increasingly relying on others.

 

A dog-trainer suggested she contact Dog Aid, an organisation who train existing owners and their pets. Qualified last year, Scamp can now pick up items, retrieve named items, use doors, light switches, lift buttons and even empty the washing machine. He can also pull her up from a sitting position or get help if she falls.

 

The length of time needed for training varies according to temperament, intelligence and the tasks required. Scamp’s trainer met with Josie over a couple of years for training sessions, and was flexible to take account of her fluctuating health. Apart from the trainer’s travel expenses, the service was free.

 

‘Providing you have the time and patience, training your own dog is a very positive experience,’ says Josie. ‘When I am ill, Scamp is a good distraction; he gives me a reason to get up in the morning and a sense of responsibility.’

 

Phone Assistance Dogs (UK) – c/o Hearing Dogs for Deaf People 01844 353898

 

Canine Partners for Independence – 01705 450156

 

Dogs for the Disabled – 01203 302050

 

Dog Aid – Delores Palmer – 01889 579103

 

Dogs Today – Pankhurst Farm, Bagshot Road, West End, Near Woking, Surrey GU24 9QR.

 

<dogstoday@dial.pipex.com>

 

If you would like to write to Christine or Josie send your letters c/o the Lincolnshire Post Polio Network. If you are on the Internet then you can email them.

 

Christine Ayre <catley@tesco.net>

 

Josie Goodinson <trevor@goodinson.freeserve.co.uk>

 

Rambo the Ram

 

by Christine Ayre Catley Abbey, Lincolnshire

 

I’ve been racking my brain cell trying to think of a subject for a story. Hilary reminds me to write for the “LincPIN” and so I try not to let her down, but this time I really thought had run out of ideas. So when, out of the blue, instead of me finding a story, a story landed right on my doorstep, I was delighted.

 

I will warn you that this is not a story for the easily shocked. It’s a story full of lust, passion and shattered dreams, so if you are faint hearted or of a delicate constitution don’t read any further. The story begins with the hay being cut in the field across the road from the cottage in which I live. After the hay was tedded and baled, my friend, who keeps a few sheep, twenty-one in all, arrived with a trailer containing the sheep and unloaded them in the field where the hay had been. The sheep, all young and pretty, soon settled into their home; finding things to occupy the long Summer days, such as watching the baler in the next field or running over to look at the post lady as she rode past on her bicycle.

 

Sheep are often thought of as stupid creatures. I don’t agree with this opinion. I think they are very clever animals. Anyone watching as I do most evenings what I call the lamb racing, would soon see how clever sheep are.

 

The lamb racing goes on in the cool of the evening. All the sheep gather, I suppose at a prearranged spot in the field. Mostly this is by the water trough. Then they all set off and race across the field,

 

the lambs skipping, jumping and skit-scatting along, with the old ewes trying to emulate them. Then they gather again to race back to the water trough. This is obviously their entertainment before they settle down to sleep for the night.

 

Back to the story. The young sheep are in the field and all is peaceful, until yesterday afternoon, suddenly all was noise and confusion. I went to the gate to see what was happening. Coming round the bend in the road was ‘Rambo’ the ram, from a farm a couple of miles up the road.

 

Rambo had obviously seen the young girl sheep pass by in the trailer and from that moment he started planning his escape. As soon as the coast was clear, he jumped the fence and with lovelight in his eyes, he set of in pursuit of the woolly lovelies. Now two miles for a little ram, on one of the hottest days of the year, is a long way.

 

So when he neared Catley Abbey he was just about on his last legs. Then coming round a bend in the road he glimpsed that vision of which he had been dreaming, a field full of scantily clad, nubile young girl sheep. Determined that they would see him in the best light he finished the last hundred yards at a fast trot, his yellow eyes gleaming and his little hooves beating a tattoo on the road.

 

The girl sheep not acting like coy young things, instead like brazen hussies, calling to him and inviting him into the field. Rambo cleared the fence like a show jumper, the girls gathered round him pushing and jostling for position, like silly teenagers round a spotty pop star. Unfortunately, Rambo is not so young now and the long journey and the last hundred yards turned out to be his undoing, his energy gone he just wanted a drink and then to get some sleep.

 

As the evening shadows tiptoed out to gather round poor Rambo he slept on, dreaming of ovine beauties with golden eyes and sheepish kisses, nights of passion lost to him for ever. The Spring lamb of the afternoon had turned back into old mutton.

 

I saw him next morning loaded up in a trailer, and on his way home I caught sight of his disappointed face as he passed the gate.

 

The girls have gone back to watching the baler, planning the racing for this evening and no doubt discussing Rambo and the fact that he is past his prime.

 

We polio survivors could take a lesson from this story. If only Rambo had rested a few times on his journey to Catley. If only he had not tried to do everything in one day. If only he had paced and rested. If only he had thought tomorrow is a day not started. If only!

 

Christine Ayre,

 

Chairperson – Lincolnshire Post-Polio Network

 

catley@tesco.net

 

Travel to and with Hilary.

 

written with the sweat of my brows by Klaus Kunert

 

Last November we got an invitation from Hils to meet her in Lincoln, when she and her daughter visited us in Berlin. My wife Renate and I readily agreed, and so we went to England, quicker than hoped before. We had much laughter already in Berlin, so we thought it could be a nice trip. But it was still much nicer than expected.

 

We came to the London airport and because of the wheelchair option, we met an attendant at the aircraft, who pushed us straight to Hils car. He was so quick, that is was impossible to talk to him. So we could say Hello to Hils and a friend Phil first at her car on the parking place. Then began a 3 hour ride to Lincoln. It was very funny to see all of the cars driving on the wrong side. But they all together did it very good, so we had no fear at all. Then came the first roundabout and the things seemed to be much harder, but it worked there too.

 

On our trip to Lincoln we saw very nice old villages and churches. It was very impressing. For a short stop we visited our first pub. By the way every second house here is a pub. It was a very old pub from the year 1640. Then the forest (Sherwood Forest) was so big it reached this area. So we exactly sat in the same place, like Robin Hood some years ago with Little John. The first explanations were about the English food. Here we only looked at Steak and Kidney pie for a further examination but ate toasted sandwiches.

 

After a first short sightseeing for Lincoln we arrived safely. At home we had a very warm welcome with much laughter mostly because of the different translations for some words.

 

The second day found us in the old city of Lincoln with houses still from the Romans. It was very interesting to see this. Here we had our first Fish and Chips meal, we very enjoyed it. It is near our kind of eating. The evening was like all evenings: resting, monitoring the Internet and watching British TV.

 

Next day we had our first outing: to Skegness at the North Sea. Because it was near the North Sea, we naturally eat Fish and Chips again. On the way back we had the first 5 o’clock tea in England with an LincsPPN member Miss Jean in her farmhouse with scones and butter and home-made jam.

 

The next day brought us the first English breakfast, what is called dinner at home. After this we went to the wonderful Cathedral of Lincoln. It very impressed us. Luckily there was an exposition of flowers at the same time, what still enlarged this impression.

 

The whole time we had a wonderful hot weather (about 30 degree Celsius) with no rain. We’ll now call this the real English weather in the future.

 

A meeting with polio survivors from Lincolnshire Post Polio Network, nice ladies, brought us an exchange of experiences of us polios. We all found that the problems polios have are all the same kind. It was a good meeting also because of the BBQ with sausages and lamb chops. My wife did very well in serving us all.

 

On Monday we drove again to the Sea. This time Alison, Hils daughter, was the driver. She is a little younger, so the ride got a little faster. In Cleethorpes we saw again the sea, donkey ride and beach buggy ride, the last Renate and Alison enjoyed very much. Of cause we had for lunch Fish and Chips. On the way we saw an exhibition of scarecrows in a little old village Faldingworth, what was very funny. One theme was about Alice in wonderland with more then 15 scarecrows.

 

The other days went by with sightseeing in and around Lincoln. This brought us to an heritage airfield near Boston. Here I learned that this Boston is the real Boston the pilgrims started from to the new world to found the Boston in the States, MA.

 

Unfortunately the times run quicker than expected. So we had to leave sooner than we wished. But we strongly hope, that we meet again in the nearer future. Either in Berlin or in Lincoln or on a place between. With this record I wish to express my thanks to Hils and her daughter for caring for us and for so much fun and enjoyment.

 

See you again not so far. Bye and Tschuess from

 

Klaus and Renate Kunert KlausinB@aol.com – Berlin, Germany

 

A PERSONAL EXPERIENCE OF THE CONDITION KNOWN AS SCOLIOSIS (COMMONLY KNOWN AS CURVATURE OF THE SPINE)

 

My name is Anne Proctor and I am a 58 year old Grandmother and for as long as I can remember I have had the condition called Scoliosis. I was first aware of this when I was five but only discovered in the last ten years that I was born this way.

 

As a child I had intensive physiotherapy and hospital checks every 3 months by a consultant. At the ripe old age of 18 I was discharged and proceeded to get on with my life.

 

I was more or less unaffected at this time and duly embarked on my college studies graduating some time later.

 

Time went by, I married and subsequently had two children. However, after the birth of my second child I started to have some problems with my back and went through a very difficult period suffering pain and numbness. I had various experiences of trying to resolve this problem and almost gave up hope of ever getting any improvement. My GP at that time realised how desperate I had become and he contacted a scoliosis specialist and asked if he would see me.

 

After only 3 weeks I saw the consultant and he more or less knew at once what was wrong with me. He proceeded to treat my by applying a specially made support which if successful would correct my posture and try and straighten me up a little therefore relieving the pain. Guess what after about six months it worked and after being monitored for about a year I was discharged.

 

A few years passed and I returned to college and resumed my career until unfortunately, I was in a major accident which left me with injuries to my back and a leg which had to be plated, which incidentally was shorter anyway from birth. I then had to embark on a series of treatments to control the pain. After seeing my consultant he referred me to the Pain Clinic at the hospital and I have to say that over the last 8 years I have had some marvellous treatment and felt that I had someone batting on my side so to speak.

 

The most recent treatments I have had have been Crioprobe and Radio Frequency Probes which settles the pain for months at a time, providing of course I do not overdo it as this causes the pain to come back. I have to say that this treatment does not suit everyone, however I am one of the lucky ones.

 

Meantime I carry on as best I can as a Regional Secretary for the Scoliosis Association UK based in Barnsley with the knowledge that we should not give up as there are treatments available out there. If after reading this article anyone wants to contact me please let Hilary know.

 

Anne Proctor

 

Scoliosis Association UK

 

Disabled Person’s Parking Badge – Orange Badge – Information for Lincolnshire.All new and renewal requests for disabled persons parking badges will be dealt with centrally by a dedicated team at Social Services Central Office, Wigford House, Brayford Wharf East, Lincoln, LN5 7BH, telephone number 0845 6030536.This has been set up to deal more equitably and consistently with applications, process most applications more quickly using a dedicated team, and needing to make fewer references to medical practitioners for further information, which should also speed up the process for many applicants. Local offices will still maintain a supply of application forms and leaflets and still be a source of guidance.Applicants must meet “Automatic Criteria” – Registered Blind, Mobility Allowance, Mobility Component of DLA, War Pensioners Mobility Supplement, DOH grant towards a vehicle or own a

 

vehicle supplied by a Government department.All other applicants will be assessed under the “Discretionary Criteria” and must be permanently and substantially disabled to an extent which makes them “incapable of visiting shops, public buildings and other places unless allowed to park close to their destination” (DOT circulars 4/82 and 3.91. The disability must be such that they are unable or virtually unable to walk.

Dr. Sarah Smith – Patron of the Arachnoiditis Trust Asks how many Polio Survivors have had problems following spinal injections? and gives a short explanation of Lumbar Puncture and Arachnoiditis

 

Lumbar Puncture – you may find out some interesting facts about Cerebral Spinal Fluid, such as protein levels, but in essence it is still not a definitive test for PPS. (It may exclude other conditions of course). As with any test, especially ones of an invasive nature, one has to ask oneself whether or not the results will impact on the future management of the patients’ condition (symptoms and signs). If the answer is not at all/slightly then any test should be reconsidered. In the case of invasive tests, especially around the spinal cord, there should be a clear and strong indication that there will be significant benefit from knowing the test results, (i.e. a significant change in treatment that might change the prognosis). It is also important to take into account any spinal pathology as mentioned (stenosis etc) both in assessing the feasibility of performing the test and also in considering the differential diagnosis. The art of diagnosis should rest on proper history taking and clinical examination.

 

Arachnoiditis is a chronic, insidious condition that typically causes debilitating, intractable neurogenic back and limb pain and a range of other neurological problems.

 

Arachnoiditis (inflammation of the arachnoid membrane) [The brain and spinal cord are covered by the meninges – a layer of three membranes – the dura, arachnoid and pia] is a chronic, debilitating, incurable condition which is not as rare as is commonly supposed. The true incidence remains unknown, but one expert has estimated approaching 2 million cases worldwide related to Failed Back Surgery Syndrome in the last 50 years: without taking into account other cases when there is no history of surgery.

 

Arachnoiditis is now most commonly iatrogenic [induced by the treatment itself] in origin. The majority of cases are multifactorial, so it is virtually impossible to pinpoint a specific cause. However, chemically-induced arachnoiditis: CIA (due to myelographic dyes, epidural steroid preparations etc.) is much more florid and systemic than mechanically-induced arachnoiditis: MIA. (caused by any type of trauma including surgery and multiple lumbar punctures, as well as chronic mechanical pathology such as prolapsed disc, stenosis or spondylosis). CIA is essentially a toxic condition. The syndromic clinical picture often has an autoimmune component and indeed, some patients have a diagnosed autoimmune disorder such as Sjogren’s syndrome or Systemic Lupus. There is also a third subtype of arachnoiditis, due to miscellaneous causes such as meningitis or subarachnoid haemorrhage.

 

Arachnoiditis is substantially under-diagnosed: this is likely to be due to 2 factors: (i) doctors consider it rare and are not familiar with its clinical presentation (often they diagnose conditions such as MS/FMS/CFS/ME or even depression or at worst, malingering), (ii) the iatrogenic [induced by the treatment itself] origin may lead to a reluctance to diagnose.

 

This condition has not to date been systematically researched. Indeed, a leading expert has called it a “scientific orphan”. Treatment thus far has been purely palliative and often only partially so. Future options must look at the condition holistically if there is to be any chance of a worthwhile degree of success.

 

If anyone would like more information on this condition you can give us a ring or write to Dr. Sarah Smith c/o the LincsPPN or email her directly: “Sarah Smith” <sasmith@easynet.co.uk> or contact the Arachnoiditis Trust, PO Box 27, Stoneycroft, Liverpool, L13 5RS – Tel/Fax 0151 259 0222. You will find a long article on Arachnoiditis by Dr. Sarah Smith on

 

http://www.btinternet.com/~thinkback/arach.htm

 

See also ARACHNOIDITIS INFORMATION & SUPPORT – Dr. Sarah Andreae-Jones Smith and EPIDURAL ANAESTHESIA AND ARACHNOIDITIS

 

Atypical Coughing and Hypoventilation Syndrome in the Polio Survivor.

 

Deberah Nightingale <printcess@home.com>

 

I contracted polio in 1949 and “appeared” to have a nearly full recovery with the exception of a paralyzed left leg and I functioned in what I thought was fairly normal way until my early to mid twenties which was in the early 1970’s.

 

Through those years I use to have frequent colds and upper respiratory infections that always seemed to lead to weeks and even months of coughing.

 

During a particularly active time in my life, nurses training, I was so tired all the time and thought I was just extra lazy because all my fellow students seemed to be doing just fine. And I coughed all the time. My instructors made me wear a mask while doing patient nursing and it was worse behind the mask. We know now I was building up C02.

 

Throughout the next decade the pattern was like a broken record. Nothing helped and doctors seemed baffled. I started having pneumonia several times a year. The coughing would subside once I finally fell asleep only to start again within minutes of getting up. Activity of any kind made me breathless and increased the coughing. By evening I was exhausted and talking was almost impossible.

 

One time is late 1991 I was hospitalized for intractable coughing. I was just so sick and exhausted but had no detectable infection. My doctor put me on nasal cannula oxygen and the coughing diminished. When the doctor saw me “getting better” he had the oxygen discontinued and the coughing returned full force.

 

He left town and I was seen by one of his partners who didn’t know me. I talked him into dismissing me by convincing him being in the hospital wasn’t helping me. There was a Polio Conference in Wichita Falls, Texas and I wanted to attend! My husband picked me up from the hospital and we drove five hours to the conference. I had a very difficult time on the trip and when I was registering, the doctor who was on call for the conference saw the physical distress I was in from coughing. He said he was ordering oxygen for me and would help make arrangements for me to be admitted to Dallas Rehabilitation Hospital Pulmonary Unit for evaluation.

 

Two weeks later I was admitted to DRH. They performed a complete pulmonary function tests and sleep studies done several nights in a row. It was obvious within the first two days that I was suffering from hypoventilation syndrome from polio weakened chest wall muscles. The pulmonary team recommended the use of a BiPAP ventilator supplemented with a low amount of oxygen. The remainder of my stay there was spent learning how to use the BiPAP, adjusting the settings for my optimum ventilation, trying different masks and head gear, and getting use to the whole routine.

 

After the testing and diagnosis, the doctor also removed me from the asthma medications I had been placed on earlier that year. He emphatically stated I did not have asthma. He said it was a common misdiagnosis by doctors who were not knowledgeable about post polio syndrome.

 

I slept better almost immediately. I noticed I could concentrate better and didn’t wake up with the grinding headaches, And the coughing was completely gone.

 

The pulmonary therapists explained the coughing was from my bodies attempt to get rid of the C02 built up in the bottom of my lungs because I just couldn’t move it out.

 

There is one test that is very important for a polio survivor to have done. It is called the MAXIMUM INSPIRATORY FORCE and MAXIMUM EXPIRATORY FORCE. We can often force ourselves to perform many pulmonary function tests that read as normal because they only have you do them once. If they had you do them several times in a row, the results would be very different. However, the MIF and MEF cannot be forced if you have weak chest wall muscles. It is a very simple test and does not hurt at all!

 

One more thing they prescribed for me was “CHEST WALL EXPANSION EXERCISES”. This is done once a week with an ambu bag and a mouthpiece. I place the mouthpiece in my mouth and squeeze the ambu bag until it “hisses”, releasing any air the lungs cannot hold. This fills your lungs to a normal capacity to expand the chest wall making it more flexible. I do this six times in a row, once a week. I also carry the ambu bag in my backpack to use if I start coughing while I’m away from my house. It usually clears the C02 from my lungs and the coughing stops.

 

Here are a few more things I strongly urge you to discuss with your physician: A regular flu shot as soon as they are available each year and a pneumonia shot. I have had pneumonia once in the last eight years and I recovered very quickly under my doctors care at home!

 

One thing that helped me just a bit before I went in to the hospital. One of our problems is we can’t get the used air (C02) out of our lower lungs. Try breathing in through your nose as deeply as you can and then purse your lips and slowly blow out all the air you can. Try this several times and see if you feel a little clearer headed for a few minutes. No promises but it can’t hurt!

 

Respiratory Failure in PPS – By Susan Callahan

 

Susan Callahan <suec@greenville.infi.net>

 

I am a polio survivor of 40 years. I had an experience of the most frightening kind in 1989-91. I would go to sleep at night only to awaken moments later and realize that I was not able to move my arms, hands or fingers, let alone breathe! I became so frustrated knowing my husband was laying right beside me and I couldn’t awaken him to help me. After what seemed like a long time I would breathe and sit up in bed and cry. This scared me…. I didn’t know why it was happening. Perhaps was it from the very emotional stress that I was going through at this time in my life? I was afraid to go to sleep or to take a nap in the afternoons. After several months of sleep deprivation. I met a dear friend who also has PPS herself that came into my life when I really needed someone that could help understand what was going on with my breathing. She suspected that my chest wall muscles were weakening by the PPS and that I should see a doctor.

 

I finally was able to get help from a doctor, who did a pulmonary function test and sent me to a Sleep Clinic. The Sleep Clinic is separate from any hospital and I just went in at night by 7pm. They want you to just do what you normally do on any given day. It does take time to fall asleep with all the gear on. At any rate it was hard on the first time. Where during the diagnostic procedure I stopped breathing 99 times in 1 hour. I now have had a Bi-pap machine with oxygen for 3 years. I had to go back a year and a half later and that’s when they discovered I needed a oxygen concentrator with my bi-pap, which I have 4 litres. It has made a big difference to my life I have felt

 

so much better.

 

My symptoms were coughing, fatigue, sleep deprivation, headaches and overall pain in my body. I hope that this article helps someone who might be experiencing these problems. There are many people who can help you with your health problems and get equipment that will make your life easier. I am so grateful for the people and doctors that have come into my life. Now I am able to be here and do the things that I need to do at this time in my life.

 

A man in his 50’s goes to his doctor, complaining about a pain in his leg that doesn’t heal and wants a diagnosis and explanation.The doctor checks out his leg, but can’t find anything wrong. So he gives the old guy a full physical exam, and still can’t come up with any possible explanation for the pain. The doctor hands the patient his bill and says, “I’m sorry but the pain in your leg is simply caused by old age, there’s nothing I can do about it.”The old man replies with a look of disbelief, “That’s impossible! That can’t be!”The Doctor says, “What do you mean? I’m the expert here; if you know so much, how can you say it’s NOT old age?”The patient answers, “I’m no doctor but it doesn’t take a medical degree to tell that your diagnosis is wrong. Clearly you’re mistaken. After all my other leg feels just fine, and it’s the SAME AGE!”

HINTS, TIPS & BITS from Polio Survivors worldwide

 

Before I stopped walking and ended up in a scooter, I had a wheelchair I used for Malls and big stores. Otherwise, I walked. What was the turning point? I was getting weak but I pushed myself because I hated being in a wheelchair. At the end of a day when I had been to see my Dr. in Chicago, I collapsed to my knees and broke my femur. Because of THAT, I never walked again. The moral of this story is, don’t continue to push yourself when you know you’re getting weak. You know your body better than the doctor. If you fall and injure yourself, its no skin off his nose. YOU are the one who suffers! Not him! Listen to your body and do what’s best for it.

 

Forget your pride and forget people who tell you to push beyond what your body can endure. A wheelchair is NOT a narcotic!! Wheelchair use or dependency simply means you’ve give your body permission to rest and recuperate. A polio body NEEDS rest and why people can’t understand that is a mystery to me!

 

Barbara Casson <Pepthewep@AOL.COM>

 

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Scooters and Wheelchairs.

 

Several things to consider: Be sure there is someone in your area that is familiar with and can service and repair your equipment. I see this all the time. I’m asked to work on both scooters and power chairs that are “new” to me. It just takes more time to get parts and familiarize myself with the item.

 

Power chairs do get “approval” easier than scooters. [UK – wheelchairs only on NHS] If you have weakness in the arms power chairs are controlled easier (joy stick). Scooters have a tiller (like a bicycle) and require more physical effort to steer.

 

If seating comfort is a big issue a power chair has many more options available than scooters e.g. custom seating.

 

Both power chairs and power scooters are mostly 24 volts (two 12 volt batteries). Scooters usually use the smaller U1 batteries. Power chairs use U1’s and two larger and heavier sizes. Batteries are either Jel (no maintenance) or lead acid (requires the addition of water from time to time). Good batteries last about a year (some longer) but a year is a good rule of thumb.

 

Tires come in different tread designs (some more aggressive for traction), some for quiet operation. They come in solid (one piece), tire and tube (can puncture… need to monitor air pressure… but is a softer ride), and a regular tire with a solid insert inside similar to the solid tire in ride.

 

Both are quite heavy. You need to consider how you can transport it. Van with lift? Station wagon, van, P/U truck with a ramp or a special hoist? A car with a LARGE trunk? Transporting is probably the biggest problem I have to help people resolve.

 

If you must, break them down to transport. The scooters usually break down into five components. Some power chairs fold (after removing the batteries) but most do not fold.

 

Scooters usually do much better outdoors and power chairs usually do much better in the house. How will you be using it most of the time?

 

It is a good policy to have your equipment gone over every six months by a qualified and caring service tech. Cleaning, lubing, eliminating battery corrosion, and a load test to verify the condition of the batteries will keep both you and your wheels happier.

 

I have been servicing all kinds of equipment for the disabled on a voluntary basis since I retired in 1994 (yes the agency is using me but I love to work with my hands and help my disabled friends in the process).

 

Hope this rambling(s) is of some help.

 

Jim in Akron, Ohio – Polio 1940 PPS 1994

 

Jim Ellison <JElli93266@AOL.COM>

 

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Keep your extremities warm. Check them. You may not realise how cold they have become, especially if you use a wheelchair or scooter. Cold limbs do not function as well as warm ones. So think about warm clothing jackets and trousers, tights and socks, gloves, hat and scarf. Get brightly coloured ones that make a statement. I feel good about who I am.

 

Hilary – linpolio@legend.co.uk

 

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Place the cat bowls on something off the floor. I’m currently using a three-tiered wicker plant stand. The cat just stands on her hind legs to eat from the bowl placed on the 2nd shelf; she puts her front legs on the 2nd shelf by the bowl. She’s been doing this for almost six yrs. and no ill effects. I never need to bend down to the floor to place or to retrieve the bowl. Feed my dog the same way – off the floor. BTW, I keep a flat pillow on the top tier of the plant stand and my cat jumps up and lies on the pillow to look out the window.

 

KATHRYN P ROSENTHAL, Michigan.

 

<KROSENTH@PRODlGY.NET>

 

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I’ve arranged my house so I can slide out of bed onto the rug by the bed, under which is thick foam padding. So I can then crawl (no brace yet so can’t walk w/o crutches, and am WOBBLY with them) into the bathroom, likewise padded. Makes morning routines SAFE and manageable. When I

 

go to a hotel (twice annually, with my job) I specifically ask NOT to have an accessible room, as they come with a huge bathroom with slippery-when-wet floor. I want a SMALL floor in the bathroom which I can navigate on crutches or, better yet, on the floor. I take some slabs of dense, thin foam with me to put on the bathroom floor so I can safely navigate around there, even in a hotel.

 

Just one home safety and mobility adjustment. I also have double railings on the basement stairs. Now that I have a brace (last 10 years, not before), I go down the stairs backwards, holding firmly to the railings. Come back up facing upstairs again. Works for me. Love those railings, installed in 1972 by my then-living husband and haven’t worked loose a bit since then.

 

Jeanne W. Houghton, VA – <Seacairn@AOL.COM>

 

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Does he take sugar? – A possible answer.

 

I’ve got a thought on enlightening those folks on two legs about folks on wheels. When they ask the standing person what the sitting person wants/thinks, etc, how about asking them to sit down, and then asking them whether they can still see, hear, think and talk while sitting down. Then let them know that – – to your and their amazement – – YOU TOO can think, talk, hear and see while sitting down, and can even answer questions!

 

Jeanne W. Houghton, VA – <Seacairn@AOL.COM>

 

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Polio has made me what I am today.

 

I contacted polio in 1960. I’m beginning to realize polio also made me what I am today. I don’t have a healthy body but because of this I have a strong mind and loving spirit. Aren’t these attributes far more important? You sound like a fighter too. We’re all survivors and it’s a far greater feat to have survived the onslaught of such a major virus than to even climb Mount Everest.

 

Rene “Ed & Rene Butterfield”

 

<joyl1@centurytel.net>

 

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I must tell you about myself and my experience with the Lincolnshire Polio Network. I had polio at age 3 in 1943 and lived a “normal” life with a weakened and smaller left leg. I was braced from age 3 to age 8. Surgery was performed and the brace discarded.

 

After suffering two falls in the 1990s and breaking a tibia and left wrist, PPS set in, presumably from the trauma and greatly lessened activity level during recuperation. I was braced on the left leg again in 1994 and must wear it daily. I also use a cane and forearm crutches when the cane is not enough.

 

During the past two years the PPS has worsened to the point where I had to have help in order to keep the strength and muscle tone that I still have. I was sent to a physical therapist who uses the Lincolnshire Post-Polio Library as her primary source in dealing with her PPSers. She espouses all the guidelines regarding sensible exercise and the work/rest routine. Pacing is the way to maintain what I still have without becoming an invalid. I feel fortunate in having been properly diagnosed so that I can keep functioning.

 

I maintain a schedule of daily activity that includes rest periods between each task or part of each task. In this way I do not suffer the extreme and debilitating fatigue that was ruling my life before I was properly diagnosed.

 

Please give my regards to all who have worked so hard to set up and maintain the Lincolnshire

 

Post-Polio Network so that people such as myself can live independently for many years to come instead of becoming a burden.

 

Patty Dilberto <pleed40@tdn.com> Longview, Washington

 

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Getting socks and tights on and off.

 

Now I know some of you are going to say, getting tights/socks on and off is not the easiest of tasks when your feet are so far away from you, and you arms may be weak, but it’s worth talking to an Occupational Therapist about what is available to help you. Oh! and ensure they demonstrate how they work – I well remember the fun we had when one lady brought a ‘tight gutter’ that she had been given, along to the handicapped club asking “has anyone any idea how this will help me get my tights on and off?”. Everyone took part in the suggestions and we laughed all afternoon.

 

Hilary Hallam – linpolio@legend.co.uk

 

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Are you a Caregiver for a Polio Survivor on the Internet who would like to be in touch with other Caregivers? If the answer is yes then please email us for information about our PPS Caregivers list.

 

Dave VanAken <DVanAken@aol.com> Gary Utz – <gutz@alitel.net>

 

[Editors note – For information on all Polio related Mailing Lists see our Website Directory –

 

Internet Discussion & Support Forums

 

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MY THIGHS WERE STOLEN FROM ME!

 

My thighs were stolen from me during the night of August 3rd a few years ago. It was just that quick. I went to sleep in my body and woke up with someone else’s thighs. The new ones had the texture of cooked oatmeal. Who would have done such a cruel thing to legs that had been wholly, if imperfectly, mine for years? Whose thighs were these? What happened to mine?

 

I spent the entire summer looking for them. I searched, in vain, at pools and beaches, anywhere I might find female limbs exposed. I became obsessed. I had nightmares filled with cellulite and flesh that turns to bumps in the night. Finally, hurt and angry, I resigned myself to living out my life in jeans and Sheer Energy pantyhose.

 

Then, just when my guard was down, the thieves struck again. My buns [buttocks] were next. I knew it was the same gang because they took pains to match my new derriere (although badly attached at least – 3 inches lower than the original) to the thighs they had stuck me with earlier. Now my rear complimented my legs lump for lump. Frantic, I prayed that long skirts would stay in fashion.

 

It was 2 years ago when I realized my arms had been switched. One morning while fixing my hair, I watched horrified but fascinated, as the flesh of my upper arms swung to and fro with the motion of the hairbrush.

 

This was really getting scary. My body was being replaced, cleverly and fiendishly, one section at a time. Age? Age had nothing to do with it. Age was supposed to creep up, unnoticed and intangible, something like maturity… NO, I was being attacked, repeatedly and without warning.

 

During one spring, my attention was riveted to upper arms-female arms. I studied them from every angle, being careful not to raise mine in public nor flatten them too tightly against my body. In private I held them straight out and did endless circles that would have tightened my real arms but

 

did nothing for these Silly-Putty caricatures. In the end, in deepening despair, I gave up my T-shirts. What could they do to me next?

 

In short order, my right boob could hold a pencil (it seemed particularly cruel to take just one). And my eyes began to remind people that they needed a new pair of Hush Puppies. My poor neck disappeared more quickly than the Thanksgiving turkey it now reminded me of.

 

That’s why I’ve decided to tell my story; I can’t take on the medical profession by myself. Women of America, wake up and smell the coffee! That isn’t really “plastic” those surgeons are using. You know where they’re getting those replacement parts, don’t you? The next time you suspect someone has had a face “lifted,” – look again. Was it lifted from you? Check out those tummy tucks and buttocks raising. Look familiar? Are those your eyelids on that movie star? I think I finally may have found my thighs. I hope Cindy Crawford paid a really good price for them.

 

Author unknown. (You gotta love her, whoever she is!)

 

This appeared on one of the Polio lists but I forgot to copy the name of the sender and apologise for that.

 

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Tree cutting on the wood farm or GETTING THE JUMP ON FALL

 

Well, it is a new week and I may have really achieved the impossible: I got the jump on fall! What I really did was to hire some tree-fellers to take out four of the larger poplar trees in my yard. This gives me a substantial jump on leaf raking!!!!

 

These tree-monkeys knew what they were doing and the job hardly took any time at all. Of course, now I have piles of stove length firewood. FREE, COME GET YOUR FREE FIREWOOD HERE!

 

One aspect of having the trees removed is the excitement of watching these giants crash to the ground. It never fails to cause a momentous rush of adrenaline in me —- the whine of the chain saw —- the crack as the last piece breaks —- the whooshing zing as it sings its way through the surrounding branches —- the mighty rumbling whomp as it strikes the hard-packed driveway -—– finally, the snapping as the top splinters into pieces in a whip-lash action. Then you couldn’t believe the monumental sigh of infinite relief that follows. The giant is down. All is well.

 

These guys can put the 50 foot downed tree anywhere they want. They attach ropes about 3/4 way up and pull the tree onto its mark. As it is cut it goes right where they want it.

 

The head guy couldn’t come one day because (as he explained) he needed someone on the ground to pull the ropes as he cut. His ground-helper was not available on that day.

 

I responded, “Well, I could be your ground-helper. My cart [electric scooter] has a good electric motor and I could pull your rope.”

 

He was very polite as he said he would wait for his regular guy, but his eyes opened quite wide in disbelief. I don’t feel old or disabled. Maybe I look that way.

 

V. Sage <gingersg@juno.com>

 

http://homestead.juno.com/gingersg/index2.html

 

Currently Unavailable

 

P.O. Box 457, Entiat, Washington 98822

 

Author of ‘Parents Blood’, the story of her polio life with pictures of the times, and ‘Entiat Remembers’, pioneer stories and photographs from 1905.

 

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CINQUAIN: 2

 

SEPTEMBER SPIDERS

 

Autumn athletes falling

 

again, by r

 

a p p e l i n g

 

down my windowpane, September spiders.

 

© Copyright LaVonne Schoneman

 

A SENSE OF HUMOR SOMETIMES SAVES ALL

 

Many a ‘Depends’ moment is shared when Like broody hens, with canes in their clutches, Folks arrive with wheelchairs, walkers, crutches For support group meetings some saunter in Talk, ponder, and share best tips for coping, They network, discussing their common foe Polio: the syndrome post-polio.

 

Inaccessible buildings and parking Fret others. The war might be nearly lost Decades after that first brutal battle Until laughter erupts like a comet

 

Together, trouble-shooting… cage-rattle… .. ing.. problem-solving.. (while counting no cost) Inspiring… another… “Depends” moment!

 

[Translation – “Depends” are a trade name for incontinence pads, a ‘necessity’ when Polio Survivors get together and laugh too much.]

 

LaVonne Schoneman – © Copyright 1999 Email: <Vonnejo@aol.com> HOW TO COPE – Series of Booklets.

 

Practical tips for Polio Survivors 16734 – 8th NE, Seattle, WA 98155

 

Lincolnshire Post-Polio Library Book Catalogue – LaVonne Schoneman

 

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Inspiration, News and Knowledge from Polio Experience Network PEN and Ink – No. 29: Summer, 1999

 

Eaves Droppings by Mouse in Corner – alias Marion Zoesch

 

Overheard at Polio Outreach of Spokane…

 

Those folks sure can get excited about things! One night one member, Occupational Therapist Marion Zoesch, spoke and then others shared their ideas for doing things more easily. Here is part of what they said:

 

Kitchen:

 

• Keep your small microwave or storable containers on a turntable on the counter.

 

• Store rarely used dishes in cupboards over the sink to be reached with a reacher.

 

• Put towels on the refrigerator, stove, etc. to wipe hands.

 

• Use basket trays, such as from dried fruit, to put hot pots on.

 

• Use Visionware (Pyrex pots and pans) so you can see, from a wheelchair, when things are

 

boiling or cooking.

 

• If you use a wheelchair, remove the cupboard doors from the sink area if it is not an open

 

sink. Bathroom:

 

• Guardian Company makes a bath bench that sits in the tub and clamps on the side of the tub

 

for firm support. It has a transfer end to sit down before moving over into the tub.

 

• A washrag you can sit on a counter can be used as a towel if you have problems hanging up

 

the hand towel.

 

• To avoid having to get up during the night to go to the bathroom, use a bedpan and pour the

 

contents into a small bowl or pan to be emptied in the morning. Bedroom:

 

• Lower the closet rod by using a section of pipe with a chain and links hooked on the usual

 

height rod.

 

• If the bed is hard to get out of, put the legs on 4×4″ pieces of wood that have a depressed

 

section to prevent it from slipping off. Keep a spare set to take with you when staying at a

 

family or friend’s house.

 

• In the closet or storeroom use plastic see-through boxes for storage so you won’t have to

 

look into boxes to locate things. Miscellaneous:

 

• Plastic beverage bottles are lightweight to use for carrying water for plants, table, etc.

 

• A dog leash placed on the door is the best way to pull doors shut behind you if you use a

 

wheelchair or crutches.

 

• Cover a piece of 4×4 or two 2x2s with contact paper and put it along a wall so that if you

 

park your wheelchair against the wall you won’t leave tire marks on the wall.

 

• Like to garden? Use raised beds, large pots or barrels to bring the garden up to easy working

 

height.

 

• Have several reachers handy in various places to pick up dropped items.

 

Reproduced from original article in PEN and Ink – No. 29: Summer, 1999 with permission from Elinor E Young “Polio Experience Network” <polionet@polionet.org>. Elinor asked permission to use something from one of our newsletters and I asked her if she could suggest something from a current issue of their newsletter.

 

Newsletters from around the world arrive in our post or we are notified by email that they are online and can be read and printed off. Sharing information between groups is a great way to form links and new friendships. If anyone would like a Polio Survivor penfriend then let us know.

 

Lincolnshire Post-Polio Network Library – Support Group Newsletters Lincolnshire Post-Polio Network Library – Support Group Newsletters – Polio Experience Network (Spokane, Washington)

 

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ANSWER to How many F’s.

 

There are six F’s in the Sentence.One of average intelligence finds three of them. If you spotted four, you’re above average. If you got five, you can turn your nose at most anybody. If you caught six, you are a genius. There is no catch. Many people forget the “OF”‘s. The human brain tends to see them as V’s and not F’s. Pretty weird, huh? It fools almost everybody.patty diliberto <pleed40@TDN.COM>

Lincolnshire Post-Polio Library

 

Articles added since last newsletter with grateful thanks to the authors

 

Title: Dr. Henry writes about Dorothea Lange Author(s): Henry Holland MD

 

Original Publication: Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, in 1999.

 

Abstract/Extract: Several months ago, I was watching a program on the History Channel. The program focused on the 1930s, the Great Depression

 

years. Dorothea Lange was the subject of the documentary. Lange achieved some fame as a result of her many photos of individuals who were directly affected by the poverty and deprivations of the economic depression. When discussing Lange’s life, the narrator mentioned that Lange had polio as a child.

 

Title: Polio Biology V – How To Avoid Limiting Variables While Exercising Author(s): Eddie Bollenbach MA

 

Original Publication: The Lincolnshire Post-Polio Library, 4th August 1999. Abstract/Extract: It seems that we with PPS are in an awful fix. We have aches and pains and weakness which others can often counter with exercise.

 

But we are told not to exercise. Rest is the prescription for us but often this, although necessary, results in disuse problems.

 

Title: Polio Biology VI – The Polio War and Vaccine Strategy Author(s): Eddie Bollenbach MA

 

Original Publication: The Lincolnshire Post-Polio Library, 6th August 1999. Abstract/Extract: The use of vaccines like the polio Salk vaccine to immunize an “individual” against a polio infection is only one of the considerations of an epidemiologist trying to eliminate the disease from a

 

“population”. The Salk vaccine produces humoral immunity so it protects the inoculated individual, but how well does it protect the “population”? How well and how fast can it diminish the prevalence of polio?

 

Title: Strategies for Exercise Prescription in Post-Polio Patients Author(s): Anne Carrington Gawne, M.D.

 

Original Publication: Reprinted from POST-POLIO SYNDROME, edited by Halstead & Grimby, © 1995 Hanley & Belfus, Inc., Philadelphia, PA. Chapter

 

9, pp 141-164.

 

Abstract/Extract: Appropriate exercises have been shown to improve muscular strength and endurance, improve range of motion, and reduce functional deficits associated with many disabilities. In dealings with the patient with a history of polio, however, several questions arise: How much exercise is enough, and when is it too much? What kinds of exercise are best? What kinds of exercise may he harmful? And are there any guidelines to prescribe a safe and effective exercise program? To answer these questions, it is helpful to first understand the basic principles of exercise physiology, as well as the pathophysiology involved in post-polio syndrome. Following a discussion of these issues is a review of the literature on the effects of exercise in neurologically intact and post-polio individuals. Finally, a new classification system is presented, which will facilitate the prescription of exercise regimens that are both safe and effective in this population.

 

Title: Dr. Henry writes about PPS and The Toddler Mystique Author(s): Henry Holland MD

 

Original Publication: Central Va PPS Support Group (PPSG)’s newsletter, The Deja View, in 1999.

 

Abstract/Extract: Several years ago at one of our support group’s regular monthly meetings, we divided into three groups based on our age when we had

 

acute polio. One group was age five and under, one was age 6 to 18, and one was over 18. We discussed our memories of the acute polio experience.

 

Title: Electrodiagnostic Findings in 108 Consecutive Patients Referred to a Post-Polio Clinic – The Value of Routine Electrodiagnostic Studies

 

Author(s): Anne C. Gawne, Bao T. Pham, and Lauro S. Halstead.

 

Original Publication: The Post-Polio Syndrome: Advances in the Pathogenesis and Treatment Volume 753 pp 383-385 of the Annals of the New York Academy of Sciences May 25, 1995.

 

Abstract/Extract: Many patients with a history of polio develop new symptoms including weakness, pain, fatigue, and changes in function, or post-polio syndrome (PPS). Before a diagnosis of PPS is made, other diagnoses must first be ruled out. Assessment must be done in a comprehensive and coordinated manner. Therefore, as part of our routine evaluation, we do an electromyogram/nerve conduction study (EMG/NCS) on every patient. During examinations on our clinic patients we began to notice (1) electrodiagnostic evidence of polio in limbs not previously felt to be involved; (2) a normal EMG, or evidence of another disease; and (3) EMG evidence consistent with additional neurological lesions, including compression neuropathies, peripheral neuropathies, and radiculopathies. A prospective study using a routine, standardized four-extremity electrodiagnostic protocol was done to quantify the frequency of these occurrences.

 

The Post-Polio Institute “Protein Power” Diet Dr. Richard L. Bruno – Director The Post-Polio Institute Englewood Hospital and Medical Center

 

“Breakfast? Sorry, don’t have the time. In the morning there’s too much to do, like showering and

 

dressing and getting to work. I grab a cup of coffee (or two or three) and maybe a donut at work…””Lunch? Don’t think so. I’m still catching up from my late start in morning. I grab a cup of coffee (or two or three) and maybe wolf down half a Big Mac…””Dinner? I’m either too tired or hungry as Patton’s Third Army. I either defrost a piece of pizza and drag myself into bed or eat everything that isn’t nailed down!””So why am I totally exhausted but can’t stop gaining weight?”

Americans are not very good at taking care of themselves. American’s with disabilities are no better, and maybe a little worse, at self-care because it takes so much time to do things non-disabled folk do in a flash, like showering and dressing. There’s hardly any time or energy left for planning meals, shopping, cooking. . . or even eating.

 

However, people with disabilities pay a higher price for a lack of self-care than do people without disabilities. For those who use wheelchairs good eating habits and proper nutrition are essential, not only for general good health, but also to prevent bowel and urinary problems, to prevent weight gain, and to maintain a decent level of energy.

 

Polio Survivors vs. Breakfast. One group of people with disabilities shows the consequences of poor eating habits: North America’s 1.8 million polio survivors. Nearly 76 percent of polio survivors experienc Post-Polio Sequelae (PPS), the often disabling symptoms — fatigue, muscle weakness, joint and muscle pain, cold intolerance, and difficulty sleeping swallowing, breathing — that occur about 40 years after their original bout with polio.

 

PPS are requiring polio survivors to use new assistive devices or aids they discarded years ago, like braces, canes, crutches, wheelchairs and scooters, to slow down and to rest during the day. The problem is, polio survivors are Type A, hard working, pressured, perfectionistic super-achievers, who have pushed themselves beyond their physical limits and allow no time for self-indulgent luxuries, like food.

 

Polio survivors don’t want to slow down or rest, not only because they’re afraid if they are less Type A people won’t like them, but also because they are afraid of gaining weight if they become more sedentary. But they shouldn’t be afraid. Food is good! Eating properly doesn’t lead to becoming fat, it actually reduces PPS symptoms.

 

Dr. Susan Creange at The Post-Polio Institute discovered that polio survivors with blood sugar levels in the low normal range have as much difficulty paying attention and concentrating as would diabetics with blood sugars as low as if they had taken too much insulin. “Polio survivors’ ‘Type A diet’ — three cups of coffee for breakfast, skipping lunch and eating pizza for dinner — is actually starving their nervous systems’ and causing PPS symptoms,” says Creange. The relationship between diet and PPS was seen in the 1998 National Post-Polio Survey: the less protein polio survivors had at breakfast the more severe were their daily weakness and fatigue.

 

Why do polio survivors function as if they have low blood sugar and report more symptoms when they don’t eat protein at breakfast? Because polio survivors are running their nervous systems on “half a tank of gas.” About 50 percent of all brain stem and motor neurons were killed decades ago by the poliovirus. What’s worse, the metabolic apparatus, the internal power plant, of the neurons that survived the original poliovirus infection was severely damaged. So polio survivors have been running their full-tilt, Type A lives on half the normal number of neurons, neurons that are less able to use their only source of fuel, blood sugar. Dr. Creange found that even normal levels of blood sugar were not enough to fuel the remaining poliovirus-damaged, metabolically impaired neurons. And that’s where protein at breakfast comes in.

 

Protein: The fuel that keeps on giving. Protein provides a long-lasting, “slow-release” supply of blood sugar throughout the day. Polio survivors who had protein for breakfast reported less PPS symptoms because their fuel tank stayed full longer. They didn’t need to “fill up” throughout the day with short-lasting sugar fixes, like soda or candy bars.

 

When we ask our post-polio patients to eat protein every day at breakfast, and have small, noncarbohydrate snacks throughout the day, they report an almost immediate reduction in nearly all the symptoms of PPS, especially fatigue. But “protein power” diet is neither a fad nor a miracle: it’s just common sense. No engine can’t be expected to run without gas!

 

And having protein at breakfast isn’t good only for polio survivors. Mom was right: breakfast is the most important meal of the day for everyone, but especially for polio survivors, who use more energy just getting showered and dressed than does a non-disabled person who runs a marathon. We’ve found it’s a good idea to eat breakfast before showering to “break your fast” and fill your gas tank before your neurons need the fuel.

 

Our patients worry that using a wheelchair, resting more and having breakfast will cause them to get fat and have more PPS symptoms. A four-year follow-up study found that U.S. and Swedish polio survivors, living their typical Type A, “use it or loose it” lifestyles without using new assistive devices or resting, lost equal amounts of leg muscle strength, about 2% per year. However, when subjects from the two countries were looked at separately, the Swedes gained only 6 ounces per year, while the Americans gained over 2 pounds; that’s 220% more weight! Although weight gain alone is not responsible for the progression of muscle weakness in polio survivors, it is Americans’ high fat, Big Mac diet that causes them to get fat. You can fuel your neurons, feel stronger and less fatigued without gaining weight, if you choose low fat, low cholesterol sources of protein. In fact many of our patients, even as they slow down, sit down more, and use a scooter, lose weight (about a pound per week) if they eat more protein, reduce portion size and limit carbohydrates.

 

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

 

Look at the list protein-rich foods and select different breakfasts so you can have a variety throughout the week. Remember, you want foods that have more grams of protein than they do fat. Eat well and be well!

 

PROTEIN-RICH FOODS: You need 16 grams of low-fat protein at breakfast
Protein (grams)	Fat (grams)
Great:
Cottage Cheese Lite 1 cup	28.0	2.3
Salmon (3 ounces)	17.0	5.4
Yogurt (8 ounces)	12.0	4.0
Tofu	10.0	5.9
2% Milk (8 ounces = 1 cup)	8.0	3.0
2 Egg Whites	6.8	0.0
Bagel	6.0	1.4

 

Egg Beaters (1/4 cup) [cholesterol free egg substitute]	5.0	0.0
Higher Fat:
Swiss Cheese (1 ounce)	8.1	7.8
Slim * Fast “Meal On-The-Go”	8.0	5.0
Lite ‘n’ Lively Cheese (1 ounce)	6.4	4.3
Hard Boiled Egg	6.1	5.6
Cream Cheese (Lite) (1 ounce)	2.9	4.7
Lower Protein:
Quaker Life	5.2	1.8
English Muffin	4.5	1.1
Oatmeal (1 package)	4.4	1.7
Cheerios (1 1/2 cups = 1 oz)	4.3	1.8
Shredded Wheat (1 ounce)	3.1	0.6
Total (cereal] (1 cup)	2.8	0.6
Not Great:
Egg McMuffin	17.0	32.0!
Bacon (3 strips)	5.8	0.4
Peanut Butter (1 tbsp)	4.6	8.2
Coffee?	0.1!	0.0

POLIO SURVIVOR’S POWER BREAKFASTS

 

12 minute breakfast: 2 hard boiled eggs (12 g) and an English Muffin (4.5 g)

 

8 minute breakfast: 3 scrambled egg whites (10 g) and a bagel (6 g)

 

6 minute breakfast: Toasted bagel (6 g), lite cream cheese (3 g) and 1 glass 2% milk (8 g)

 

4 minute breakfast: Yogurt (12 g) and 1 ounce of low-fat cheese (6 g)

 

2 minute breakfast: 1/2 cup low-fat cottage cheese (14 g)

 

CHECK WITH YOUR DOCTOR BEFORE CHANGING OR STARTING ANY DIET!

 

Dr. Richard L. Bruno is Director, The Post-Polio Institute

 

Englewood Hospital and Medical Center, Englewood, New Jersey, USA. and

 

Chairperson, International Post-Polio Task Force

 

Phone: +1(201)894-3724 Toll Free: +11-877-POST-POLIO Email PPSENG@AOL.COM The above article first published at <http://www.spinewire.com/h_bruno_eat.htm>

 

Articles by Dr. Bruno can be found in our Lincolnshire Post-Polio Library. See the catalogue for:

 

Bruno, Richard L., Ph.D.

 

See also our Directory entries for: The Post-Polio Institute, Englewood (NJ) Hospital and Medical Center Dr. Bruno

 

The Harvest Center Drs. Bruno and Frick.

 

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177

 

Articles for publication by November 20th – Publication date December 5th 1999 MEMBERSHIP for this financial year is £10.00 – includes 6 Newsletters Life Membership £100 – 20 x £5 per month All Membership fees now payable by Standing Order All donations will be gratefully received. All enquiries, book requests, medical article requests, membership fees, items for newsletters and donations to The Secretary, Lincolnshire Post-Polio Network PO Box 954, Lincoln, Lincolnshire, LN5 5ER United Kingdom Telephone: +44 (0)1522 888601 Facsimile: +44 (0)870 1600840 Email: info@lincolnshirepostpolio.org.uk

 

The Lincolnshire Post-Polio Network takes great care in the transcription of all information that appears at this site. However, we do not accept liability for any damage resulting directly or otherwise from any errors introduced in the transcription. Neither do we accept liability for any damage resulting directly or otherwise from the information available at this site. The opinions expressed in the documents available at this site are those of the individual authors and do not necessarily constitute endorsement or approval by the Lincolnshire Post-Polio Network.

 

© Copyright The Lincolnshire Post-Polio Network 1999 – 2010.

 

Copyright is retained by The Lincolnshire Post-Polio Network and/or original author(s). Permission is granted to print copies of individual articles for personal use provided they are printed in their entirety. Links from other Internet WWW sites are welcome and encouraged. We only ask that you let us know so that we can in future notify you of critical changes. Reproduction and redistribution of any articles via any media, with the exception of the aforementioned, requires permission from The Lincolnshire Post-Polio Network and where applicable, the original author(s).

 

Document preparation: Chris Salter, Original Think-tank, Cornwall, United Kingdom.

 

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue07.html> Last modification: 5th February 2010.