Newsletter – Page 13 – Polio Survivors Network

Linc Pin Volume 2 Issue 2

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 2 – December 1998

CONTENTS

Seasonal Greeting from

The Right Worshipful the Mayor of Lincoln Councillor Bud Robinson

Dear Friends,

It is my pleasure to extend Seasonal Greetings to all readers of the Lincolnshire Post-Polio Network Newsletter the LincPIN.

I was pleased to be able to open the Lincolnshire Post-Polio Network AGM in September 1998. I experienced at first hand the work that is carried out by the organisation and, whilst I am pleased that the Network actually started in the City of Lincoln, it also distresses me to learn about the difficulties Polio Survivors are experiencing in receiving medical attention in this Country.

I hope, and am confident, that one day society will recognise the problems and make sufficient funding available, not only for the provision of treatment, but also to enable support groups to function without having to think where the money is coming from.

However, to finish on a more positive note, I was truly inspired and am full of admiration for the way Polio Survivors are coping with the new problems they face.

I enjoyed my visit to the LincsPPN and despite all the problems I heard about, it was a happy occasion.

I would like to take this opportunity of wishing you all A Very Happy Christmas and A New Year

that will bring recognition to all Polio Survivors.

Bud Roy Robinson Mayor of Lincoln

Visit Lincoln City Council Website – http://www.lincoln-info.org.uk/

CONTENTS

Seasonal Greeting from The Right Worshipful the Mayor of Lincoln Councillor Bud Robinson

Editorial by Hilary Hallam, Polio Survivor

Happy Holidays Grace R Young, MA, OTR

My Trip to Jena, Germany in my new Motability VW Sharan Hilary Hallam

Shopmobilty in Southampton Steven Carrett – LincsPPN member Southampton

plus Shopmobility in Lincoln

Trip to India November 1998 John Horan, Polio Survivor from Blackpool

Shaun Hardy passed away last month aged 42

PPS – Crisis or Opportunity. A Chinese view of Disease. Vicki McKenna. Lic.Ac. MBAcC,

LincsPPN Member, Polio Survivor

Encounter in Burgundy John Bowles

Catley Priory and An Autumn Day Christine Ayre

A Polio Christmas Carol Dr. Henry Holland

L-carnitine and its use in the management of the fatigue of PPS Dr. Henry Holland

When Silence Isn’t Golden Dorothea Nudelman

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

Conference 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. Although it does not provide an endorsement, it is provided as a service for those seeking such information. ALWAYS consult your doctor before trying anything recommended in this information or any other publication.

Lincolnshire Post-Polio Network

Editorial by Hilary Hallam, Polio Survivor

So much has happened in the last two months that it’s difficult to know where to start. However at this time of the year, may I on behalf of the Committee wish each and every one of you the Best Wishes for the Coming Season and hope that all who read this will come together with us to increase the awareness of the problems that Polio Survivors throughout the UK are having in

getting holistically assessed, the correct advice and treatment.

Fundraising is a must for us to improve on the service that we provide. Finance is needed for the basic day to day running, for improving the services of our WebSite and for attending Conferences. If you have any any ideas, suggestions of sponsors or would like to donate funds for specific areas of our work then please get in touch.

Since our last newsletter we have joined the Neurological Alliance – which is an association of Neurological Support Groups coming together – Speaking with One Voice. We have to thank a Polio Survivor in Australia for not only making us aware of the work of the Alliance but also donating our first years membership fee.

There are also two British articles on PPS that have been published in the last two months – one in a publication for GP’s, Update, 4th November written by Dr. Paul Ballinger – and the other in the National Association of Fundholding Practices Yearbook 1998 written by Dr. John Shneerson. We have obtained copyright permission to add them to our library and would like to express our thanks to the authors and the Editors of both publications. We have enclosed them with this newsletter.

I attended the Bundesverband POLIOMYELITIS e.V. PPS Conference in Jena Germany accompanied by my daughter Alison and was able to meet up with Polio Survivors not only from Germany but Holland, Switzerland and Austria. I renewed contacts with Dr. Trojan, Dr. Parker and Wendy Malisani from Canada and made many new contacts including Dr. Agre from USA and Dr. Nihal Fahey from Egypt and the many German and Czech Doctors that were present and I brought back more medical articles to add to our Library. See the story of my trip on the next page.

Phil and I attended the fourth meeting of the Neurological Patients Forum at Queens Medical Centre where we were able to bring to the attention of the meeting – which included a panel of neurological rehabilitation specialists – that those of us with chronic neurological conditions who do not come into hospital as an in patient do not see a multi disciplinary team. We are not getting the same level of care by attending outpatient clinics. These meetings were started to give Patient Support Groups a voice in how services are run in the Neurological Wards D10 and D11. So far the Patients Information Room has been retained, improved on, with more information. Patients information and satisfaction forms have been refined. The role of the Primary Nurse has been implemented and the team gave a paper at the recent Neurological Support Group Conference at QNIC where we had a stand. The team are ready to listen to all the points and are concentrating more now on the problems of outpatients and will be bringing this to the notice of the hospital. One fact that impressed us all was their honesty in telling us what is achievable. We all agreed that dialogue like this is necessary to improve on services.

Dr. Alan Whiteley now runs a PPS Clinic at QMC, holistically assessing polio survivors and following elimination tests diagnosing. However as yet there is no follow up of an assessment by a Physic, OT and Social Worker for advice and treatment. Dr. Whiteley met with Hilary after the meeting and told her that he is having further discussions with the hospital management and we have our fingers crossed. Obtaining a correct diagnosis is important but this must be followed up with a treatment plan that can be case managed back to our local areas.

The LincsPPN were invited by Ann Proctor the regional representative of Scoliosis Association UK to share a stand at the Disability Awareness Forum held in Barnsley on Thursday 3rd December. The Mayor Fred Wright and Mayoress Rita Hunt and other professionals who attended were very interested in the work that we are doing. Most being totally unaware of the existence of PPS. Five polio survivors visited the stand and once again the story of doctors not knowing and understanding about the symptoms of PPS was related. If you have scoliosis and would like more information then Ann who has scoliosis herself would be happy to talk to you. 01226 206409. or ring SAUK – 0181 964 5343 Mon. – Thurs. and speak to Pauline the Information Officer.

Gentle Range of Movement and Relaxation Class for those with restricted mobility starts Mon.

Jan 11th 1999 11.45-12.45 Adult Education Centre City School Lincoln. Ring Hilary.

HAPPY HOLIDAYS

GRACE R YOUNG, MA, OTR

Many of us benefit from using energy conservation techniques during the year but just don’t implement them between Thanksgiving and New Year’s. We seem to feel that we must comply with all the demands made on us during the holiday season. Because we have a history of warm and gracious hospitality, we succumb to other people’s expedations that nothing has changed.

Are there ways to savour the holidays, welcome people to your home, share in gift-giving and generally partake in the joy of the season without having to expend your precious energy resources? ihe answer is – of course! Here are a few suggestions. Enjoy!

GIFT-GIVING

1. Order your gifts from catalogues. If some recipients live out of your area, have the catalogue

company ship directly to them.

2. Gift certificates are always very welcome, whether to a particular store or to an entire

shopping mall.

3. Go shopping on the Internet.

4. Gift wrapping uses a lot of repetitive motion. Wrap gifts in tissue paper and put them in gift

bags.

5. Order postage stamps by mail or telephone. Request a postage-free order form from the post

office or your carrier, enclose a check and mail it back or give it to your carrier. Stamps by

Phone takes Visa or Mastercard orders 24 hours a day at 1-800-782-6724 (USA).

ENTERTAINING

Spread socializing throughout the holidays. Extend invitations to couples or small groups of friends over a period of several weeks, allowing two days or more between events to get yourself rested and recharged.

Use holiday paper plates, cups, napkins and tablecloth. Let your guests empty their utensils into a large plastic trash bag and ask a nondisabled person to carry it outside. Have a potluck.

Order a party tray from a supermarket – lots of choices from cold cuts and sandwiches to fruit and vegetable platters. Large discount stores like Price/Costco (USA) carry containers of appetizers and hors d’oeuvres.

Many supermarkets offer complete holiday dinners with all the trimmings for a very reasonable price. Choices include turkey, ham, or prime rib, and you only need to heat up the items.

DECORATING

Invite your friends to decorate the tree and help make your home festive. Extend invitations to a “Deck the Halls” party and serve refreshments from the above suggestions.

Grace Young gryoung@pacbell.net WebSite http://www.reocities.com/HotSprings/4713/

See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

1. Quadruped With Crimson Proboscis2. Eight PM to Six AM Without Noise3. Minuscule Hamlet in the Near East4. Ancient Benevolent Despot5. Adorn the Vestibule6. Exuberance Directed to the Planet7. Listen, Aerial Spirits Announcing8. Trio of Monarchs9. Yonder in the Haystack10.Cherubim Audited From Aloft11.Assemble, Everyone Who Believes12.Hallowed post meridian13.Fantasia of a Colorless December 25th 14.Tintinabulations15.A Dozen 24-Hour Yule periods16.Befell During the Transparent Bewitching hour 17.Homo Sapien of Crystallized Vapor 18.Desire a Pair of Incisors on December 25th19.I Spied My Maternal Parent Osculating 20.Perambulating Through a December Solstice FantasyTest Results:15-20 Correct: You don’t need any Yuletide spirit.10-14 Correct: You could use something in your stocking! 5-9 Correct: Are you sure you have the right holiday?0-4 Correct; Where have you been the last 1900-odd years?

My Trip to Jena, Germany in my new Motability VW Sharan

Having visited two PPS conferences in American and Canada and met many Polio Survivors en route it became obvious that having a scooter was a marvellous way of saving energy, but without transport to take it where I wanted to go meant that I did not have control of my life. I therefore embarked on the long process of finding a vehicle that I could sit in, drive and would take an electric scooter. Easy you might think, but not when you are six foot tall and have very long legs with weakness that need to be out in front of you. Eventually I found not one but 3 vehicles all virtually the same but with deposits from £3,700 to £2,400.

I went to DC Cook in Lincoln and they arranged for me to test drive a VW Sharan automatic – the lowest deposit. I was able to take it for a long run and it was lovely to drive. However, there was one big hiccough. I found that I did not have the required amount of DLA time and had to apply for a review. I was very disappointed as I had hoped to go the PPS Conference in Germany in my car. I requested a review of my DLA and asked for a quick reply and much to my astonishment got it. I then applied to Motability with the same request and they completed the paperwork very quickly so that I was able to take possession of my VW Sharan 2.0 SE late on Monday 27th October 1998. Tuesday saw East Lincs Mobility fitting the hoist – a Bruno Space Saver and Bruno Mobility Europe loaned me a Supercub scooter for the conference. Wednesday and my daughter and I drove to Hull to catch the P&O North Sea Ferry to Rotterdam. P&O customer services were wonderful and making the reservation, paying for it, and being parked right next to the lift on board was just part of their normal service. We took our bags to our reclining seats and then visited the Duty Free Shop. On the way back to my seat I checked out the Disabled Toilet, plenty of room and well laid out.

Back in my seat and the Captain made the welcome announcement that half way across we would be in a Force 9 Gale. Not something we wanted to hear, but a seasoned traveller behind us said it will be OK. Alison and I had the food we had brought with us and settled down to chatting with the other passengers and were given much information about driving on the Autobahns. The fast lane in roadwork’s is only 2m wide, take care. If someone comes up behind you fast then get out of their way. Good advice we found out later. Alison went off to the Bar and the Live Acts and Disco and I settled down for a sleep. I woke later and went to the toilet to find myself halfway across the ship walking up hill. I looked at my watch and realised that we were over half way and this must be the Force 9 Gale. It was nowhere near as bad as I had expected and I was soon back in my seat and asleep. We docked and it was not long before we were on the road, my daughter insisting on driving and she took to the right hand side of the road with no problem. One thing we had not thought of was the fact that the first 100 miles would be in Holland, and with not one word of Dutch between us we had to guess at the information roadsigns. We arrived at the Holiday Inn in Jena just as it was getting dark, and after visiting our room which was very comfortable and plenty of room for the scooter we went for a meal. Much fun was had in trying to work out the menu. It was not till the fourth night there that they produced an English version. Following this I crashed and every now and then opened my eyes to see that my daughter was watching American TV. Next day we joined the others in the foyer and were transported to the Freidrich Schiller University by Red Cross Transport with the help of some very good looking German lads! As we were in what had been eastern Germany we realised that for many their second language was Russian, and much fun was had in conversing in a mixture of German, English and Russian.

Universitätsstadt Jena, Schiller-Hause, 07743 Jena

The University was an old building and due to stairs we were not able to go much further than the foyer and the main auditorium and thankfully a Disabled Toilet. There were many stands in the foyer and great interest was shown in the two Orthotic Stands. Otto Bock showed lightweight callipers with carbon fibre of vibrant and multi coloured patterns and one polio survivor demonstrated them wearing her calliper outside of her leggings. Translation was provided by earphones and the two translators were working constantly. They had transcripts from some of the speakers but as you know it’s easy for speakers to change what they are going to say, and they took some articles from me to read to help with the terminology. We did not get handouts as I had expected and although I did take some notes, moving from one speaker to another it’s not easy to retain it all. (See points at the end of this article.)

On Monday Alison and I left for Berlin to stay with Klaus and Renate Kunert (KlausinB@aol.com) who I had been in touch with on the intemet. A wonderful couple who took us on a tour of Berlin,

through the Brandenburg Gate, down roads and past places that had just been names. We saw where the Berlin Wall had been, even a place where there was still some damage from the war. We saw the extensive renovation work being done to apartment blocks. Those not yet done were dull and grey and then there were those that had been finished with new facades of all colours, new balcony’s and lots of flowers. It was a very informative experience and we had a lot of fun talking in a mixture of languages with the aid of a couple of very good dictionaries and much laughter. We spent a couple of hours in a Supermarket, where I scooted round and saw it all. Some foods we recognised but there were so many German sausages and meats,different cheeses, cakes, we could have spent a fortune.

0n the Wednesday we left Berlin after an early German breakfast of meat, cheese, honey and rolls – we look forward to Klaus and Renate visiting the UK in 1999 and sampling a full English breakfast. We drove to Rotterdam keeping well to our schedule and did not get held up till 4km from the docks, where an accident at some roadwork’s held us up for over an hour; would you believe behind a lorry from Lincoln. We were ahead of most of the passengers and boarded immediately. We were late leaving but there is plenty of leeway in the timing of this run. We had a very enjoyable time in the bar watching the live acts. There is a cafe, an excellent restaurant, two bars, a cinema, a roulette table, a shop, Duty Free shops, cabins and reclining seats. The staff were extremely helpful all the time. P&O North Sea Ferries overnight service is definitely a good way to travel to Europe. They also do various short excursions at very reasonable prices.

We got home and I left it to my daughter to unpack the car, do all the washing and I sat in the chair for the rest of the day and did absolutely nothing. The next day I managed about 10% of my normal daily life and gradually was able to increase this over the next few days.

Using an electric scooter makes a great difference as you don’t have to stand to talk to people, you have a comfortable seat, you can get on and off when ever you want to and it carries all your books and bags. It saves a huge amount of energy making attending possible. If you want to attend Conferences, go on holiday, etc., then you must plan ahead allowing – and insisting on – down time to rest. Finances permitting I would recommend arriving a day earlier to allow one full day relaxing before the Conference. Whilst attending conferences, being on holiday, you run on adrenaline. Once home you need many days doing very little to catch up again.

I am indebted to DLA and Motability for completing the paperwork on time and to Bruno Mobility Europe for loaning me a Bruno Mobility Supercub – a three wheel scooter that will take up to 21 stone – with plenty of room for me to put my legs out in front either side of the control column. It is light enough for me to lift it on their Space Saver Hoist and guide it into the back of the VW Sharan. Without energy saving devices like this I would not be able to do as much as I can now. They have given me control back of my life.

The main points from the Conference were:

That there are polio survivors all over Europe with the same symptoms and the majority have the same difficulty in getting the correct medical diagnosis and treatment.

That it depends where you live in finding a doctor who has learned enough about polio, accepts that there are late effects to having had polio, and knows enough about it to give you the a holistic assessment, the correct diagnosis advice and treatment. We really need regional Centres of Excellence but at the very least one Centre of Excellence in each country case managing back to your local area.

That the criteria for polio is that you had nerve damage to your body from the Polio Virus. The distinction between non-paralytic and paralytic polio is the degree of nerve damage to an area of your body. If the nerve damage gets to 60%+ in any area of the body, then you get paralysis. Less than that, it’s only a weakness. It is accepted that polio survivors who had a diagnosis of paralytic polio are now having symptoms in limbs not thought to have been previously affected. The problem is in proving that you had polio in the first place. You need to be able to provide as much evidence

as you can of your condition before polio – of your diagnosis at the time and treatment – of how you have been in the mean time and your current problems. If you have no records then you need to ask relatives – bearing in mind that discussing this after all this time can be extremely stressful for all concemed. Many parents blame themselves for your getting the polio. It was no-one’s fault. If you can, then search local papers, hospital history, where you were staying at that time to see if there is any mention of a polio outbreak.

There are no tests for PPS. It is purely a clinical diagnosis after a thorough examination and tests to eliminate any other condition. Just because we had Polio does not mean that every symptom we have is Post Polio, we can have every other condition instead of or as well as.

EMG studies can show old polio damage but a negative result does not mean that you did not have polio. It is accepted that those nerves that did not die sprout and take over orphaned muscle fibres so different results will be found depending on where the needles are inserted.

There have been some drug trials and as many of us are concerned about the immediate suggestion that we take drugs. I asked when should drugs be considered. Dr. Trojan answered and it was confirmed by other doctors on the panel that drugs are only used once all other methods have been tried. A change of lifestyle, the use of aids and assistive devices to conserve energy, and pacing and resting must be tried first.

Professor Stück, President of the Green Cross, gave a talk explaining that Germany has changed its policy and has not used the live oral vaccine from January this year to eliminate the cases of vaccine related polio.

From talking to many polio survivors the consensus of opinion is that we all want to do as much as possible for as long as possible within our current limitations given the right advice and treatment. That we want to succeed in this phase of our lives as we did in all the other phases but we need the understanding and help of the medical profession to be able to cope with this unexpected and often traumatic change in our lives.

Contact details for services and suppliers mentioned in this article:

DLA, Blackpool	0343123456
Motability Customer Services Info.	01279635666	http://www.motability.co.uk/See also MOTABILITY by Joy McDuff – Erith in Kent LincPIN
Vol 1 Issue 11
DC Cook – VW dealers – Lincoln	01522531881	http://www.volkswagen.co.uk/
Bruno Mobility Europe	01455554242	http://www.bruno.com/
East Anglian Mobility	01621843344
P & O North Sea Ferries	01482377177	http://www.po-ferries-uk.co.uk/
Holiday Inn	http://www.holiday-inn.com/

Shopmobilty in Southampton

I would like to talk about a scheme called Shopmobility for people who have permanent or limited mobility which has just started up on 1/12/98 in Southampton, England where I live. It has been running in other areas of the country for a while, and when I heard about it from a friend of mine, I thought to myself I shall have to find out more as I have difficulty in getting about with the aid of 2 canes in the City Centre of Southampton and thought that this would be ideal for me and save my legs getting too tired.

Well I went and visited the Centre office to find out more and they supply Electric Scooters and Wheelchairs which you can hire from £2.50 if non-member and £1.50 if you join for £5 per year. Hire times are from 09:30a.m. to 4:30p.m. so it makes sense if you join up and become a member. For your one hire fee you can use your scooter for the whole hire time, so you can have the scooter for 7 hours and it is well worth the money. A few personal details are taken down and then once you paid your hire fee you can take a electric scooter out and about the city centre straight away if you so wish.

This Shopmobility is a great idea so you can travel about in style without ever getting tired and I had great fun and thoroughly enjoyed steering myself through all the crowds of shoppers. This is the life for me in future when I get to the city centre. Also I thought that I would never see myself using one as I was afraid of swallowing my pride, but now I have used one I won’t ever feel that way again, I’m a converted Electric Scooter user now.

This was the first time ever that I had tried using an electric scooter and would recommend it to anyone who has difficulty in getting about. The good thing is that anyone visiting Southampton can hire one but you are reminded through guidelines what you can and cannot do with the scooter and a map is provided to show you where you can travel to within the map boundary of the City Centre. I found the staff very friendly and helpful you also get a quick lesson in how to use one, if you have not used one before like me. My driving skills are not too bad for the first time and I feel quite confident about using a scooter.

The Shopmobility scheme is run by Southampton Voluntary Services and is funded with the support of Southampton City Council and many local businesses. If you would like more information then you can contact Southampton Shopmobility on 01 703 631263.

Steven Carrett – LincsPPN member Southampton.

<steve@CARRETT.FREESERVE.CO.UK>

Shopmobility in Lincoln

Shopmobility in Lincoln has been running for nine years. They only have manual wheelchairs for

use for which there is no charge – they have plans for electric scooters and wheelchairs but as with

many things funding is not yet available. Bookings are taken from 1.30 to 4.30 each day and up to 2

weeks in advance. The earlier you book the better, especially at holiday time. They are open from 8.30 to 4.30. Parking spaces are also available and must be booked. There base is in Tentercroft Street Car Park near the exit alleyway to the High Street. Their telephone number is 01522 544983. 01522 544983 is also the number for Lincoln Dial a Ride. Specialist taxis that take wheelchairs. Membership is £5 for one person and £7 for Family. Radius is 6 miles of Lincoln.

If you would like a Directory of Shopmobility’s and the services they provide, then contact the National Federation of Shopmobility, 85 High Street, Worcester, WR1 2ET. Telephone and Fax.

01905 617761.

A Sunday School teacher told the story of Adam and Eve in the garden, and how they disobeyed God and had to be driven out of the Garden of Eden. Then she gave crayons and paper to her little

ones and told them they could draw a picture of something in the story.One little boy drew a car. In the car was a man in the front seat, and a man and a woman in the back seat. The teacher tried to think of why he would have drawn a car. Finally she asked him, “Could you tell me about your car?””Sure,” replied the little boy, “This is God driving Adam and Eve out of the garden!” Tom Conrad / Judy Conrad <tlcon@OZCOOL.COM>

Trip to India November 1998

We had been told that the biggest waterfalls in India were to be found in North East Goa. We made our way via what passes for a road in India to a point where we could only proceed in our 4 x 4’s. Goa was gripped in the middle of winter so the temperature did not drop below 100 degrees. This also meant that the track was passable! We spent about an hour and a half following riverbeds and jungle trails with a numb bum and white knuckles from hanging onto kit and the ‘Lany’ (Landrover). Not really the place to fall out.

Our first sight of the falls from the Lany was guite spectacular, a clear blue sky, the green canopy on the mountain, and the white of the falls cutting down through the foliage, seeming to appear out of the very side of the mountain in places.

We pulled into a clearing, it was obvious that during the monsoon the riverbed we travelled would be roaring avenues of destruction. The rocks carve swathes of the ground cover away. However the baked earth provided massive ruts and India’s red choking dust covered everything and got everywhere, and I do mean everywhere!!! From this point it was Shankseys, tighten up the boots, secure the Bergen, grip the stick, head down and go for it! I walk in my own style, watch where I place every step, cover a few metres, stick in the ground for balance, stop lean on it and look round. This way I don’t fall over by looking at the scenery, and I don’t miss the scenery by watching where I’m going all the time. Friends are used to my ‘obs stops’ (observation stops) and have found that they have started to see and hear more by joining me.

On reaching the rock pool below the falls we stopped and the view was truly breathtaking, the spray formed a myriad of tiny rainbows which shimmered in the water mist. The roar was not unpleasant, and the cool atmosphere most welcome, breathing was easy.

Fluid stop, food, keep a grip on everything as we had now been joined by the smaller of the areas Mackak monkeys who wanted a feed. These inquisitive little guys were great fun, the pouches under their mouths were soon full with food. I made the mistake of not leaving enough banana in the skin I gave to one little chap, he inspected it, looked at me, then lobbed it on my head!

After an hour or so we decided to climb the falls, this is not as mad as it seems, as I enjoy Hill Scrambling in the Lake District. Again I have adopted my own technique, it may not look nice, but who gives a toss? I get there, just takes longer. We did not go into the falls but took an easy route to the East, again after an hour or so of steady climbing we stopped for fluids and to look around. On the way up I had been careful where I put my hands, feet and knees. (I use knees more than most). I was aware of cobras, centipedes and nasty stingy things of the Indian sub-continent. I was not prepared for what happened next. Sighing in satisfaction I perused the view. I looked down at my kit and noticed some droppings. “What’s this?” I asked of one of our guides. “Tiger” he smiled “but only small”. Tigershit, bullshit! I was sat in its toilet, not being Sabu I could not guess how old it was, things age quickly out there! I still have some ageing to do myself and tigers large or small don’t equate to prolonged life. I’m off this rock! Chance the falls, go for the rock pool, hope its deep

enough. Discretion being the better part of valour, my arms took the brunt of my descent. We got down a **** sight quicker than we got up.

Embarrassed laughter and a good yarn for the pub in Blighty. We did not see the noble beast, nor hear it, however, the nearest I ever want to get to a tiger is sitting next to its droppings! It seems to me that as the dry season cuts down the flow of the falls in its upper reaches, the tigers come lower for water and food. Whilst being assured we did not feature on the menu, enough was enough.

John Horan

Polio Survivor from Blackpool Black Belt 5th Dan Karate.

Shaun Hardy

passed away last month aged 42

Shaun wrote a story COMING HOME for our second newsletter about his polio at the age of two and a half. He told me how much he cried writing it but also how much it had helped him to put this into words. Many people contacted us and were able to tell their stories after reading his. Thankyou Shaun. Our thoughts are with his wife Debbie and his family at this time.

PPS – Crisis or Opportunity. A Chinese view of Disease.

by Vicki McKenna. Lic.Ac. MBAcC, LincsPPN Member, Polio Survivor

Polio Survivors are often Type A’s – responding to stressors with a go-getting attitude until the nervous system starts to announce through symptoms of PPS, that it needs a rest from this constant activity. We must now learn to cultivate a different attitude and start to respond with a more relaxed, open approach to life’s challenges. Right now we are faced with the challenge of PPS and so we need to let go of the Type A perspective that sees this situation as a dragon that needs to be slain. Instead we can choose to see PPS as an opportunity to leam how to take control of stressors in a more energy conserving way. Thus we will start to live lives that are less exhausting as we protect and nurture our damaged nervous systems.

My perceptions of life and illness have been altered by my experience of being a Polio Survivor and PPS and also by my study of Chinese medicine and its philosophy which is the background to my practise of acupuncture. The philosophy behind Chinese medicine is full of down to earth wisdom which offers us a new perspective on life and these truths can teach us to value our health and well being. They have helped me enormously to cope with and understand PPS.

Chinese medicine has its origins in philosophies that flowered in China thousands of years ago. The body of knowledge that has come down us holds that there is a vital force that permeates all life. This energy is known as “Chi” and when it flows within us steadily and calmly then we are in good health. When Chi is blocked or is deficient, due to physical factors such as viruses or because of emotional stressors, then there will be disharmony and imbalance – in other words disease.

Symptoms of disease as far as Chinese Medicine is concerned, are not to be suppressed or covered up as they are so often in Western medicine. Instead illness and its signs and symptoms are seen as an opportunity to encourage and restore the flow of Chi energy so that healing takes place and hamnony is restored. Interestingly, in Chinese character writing the same symbol is used for “crisis” as for “opportunity”. Thus the Chinese view is that whatever creates a disturbance in the flow of life, whatever creates a crisis, such as stressors or disease, will also serve as an opportunity for fresh growth. This attitude helped me to perceive my life and PPS in a new light as I began to see the symptoms of we call PPS not as a crisis to be averted or suppressed but as an opportunity to restore

health and balance to my life.

We have pushed ourselves hard in response to trauma, always feeling that we need to achieve and prove ourselves. We now need to learn to respond to life’s often difficult events in a different way by altering our perception and remembering that fundamentally we do have a choice – we can see PPS as a crisis that we have to struggle with or as an opportunity to take charge ad learn new attitudes and skills that will help us to take better care of ourselves and so feet more at ease in our lives.

This is an excerpt from “A Balanced Way of Living – An Altemative and Holistic approach to PPS“. It’s due out next year. I will let you know in the LincPIN when it’s published.

Encounter in Burgundy

You may have wondered about the origins of my physical disability. I had poliomyelitis, over 60 years ago. I was three years old, and, for all practical purposes my body, as you see it, is the only one I have known. My life is regulated by its condition, and the apparent embarrassment sometimes felt by new acquaintances surprises me, often.

Frequently, I fall over. The difficulty is that the most pain is felt by those seeing me fall. Years of practice mean that the moment I sense something is going to occur, I relax, and I strike the ground ‘cleanly’.

However, people seeing the situation always react by rushing to me, aiming to grip any available limb, and pull it. Alternatively, they pick up my walking stick and hold it. Of course, that is the one thing I need to raise myself. It seems that, by falling, I violate one of the basic aims of society – being temporarily horizontal I must be made vertical again, as soon as possible.

I did this once when I was stopping overnight in a French campsite, during a motor caravan holiday. There had recently been a thunderstorm, and the pathways were muddy and covered with gravel washed down by the rain. My wife and I had decided that we would visit the camp restaurant, down a fairly long, sloping roadway. Inevitably, I trod on a small piece of stone, and my foot slipped. I fell, turning on to my back on the way, and ended facing the sky, with my head lower than my feet and my arms spread wide.

There were cries in French, German and Dutch, and a crowd of men, women and children quickly gathered round me. When you fall in this spectacular way you knock the wind from your lungs, and you need to rest a moment, to collect energy for the next stage. My wife has mastered the art of fending off misplaced offers of help, and she stood guard as I checked off the extent of damage. These amounted to grazes on my elbows, mainly, together with a very wet seat to my trousers. I now had to turn on to my front, then turn my body through 180 degrees so that my head was higher than my feet. Fairly quickly I scrambled to my feet, amid cries of relief all round.

I think the main attraction of the event, for me, was provided by a pleasant young German mother, who had the perfect suggestion for curing me. She asked, with a wicked gleam in her eye, if I wanted a kiss!

John Bowles – JBowles@aol.com Hampshire, England.

Giggles from Donnie

<mickiemc@frontiernet.net>

MANUFACTURER’S WARNINGS

TESCO’S TIRIMASU DESSERT Do not turn upside down.

(Printed on the bottom of the box)

MARKS & SPENCER BREAD PUDDING Product will be hot after heating. PACKAGING FOR A ROWENTA IRON Do not iron clothes on body.

BOOTS CHILDREN’S COUGH MEDICINE Do not drive car or operate machinery. NYTOL (A SLEEP AID)

Warning: may cause drowsiness. A STRING OF CHRISTMAS LIGHTS For indoor or outdoor use only. A JAPANESE FOOD PROCESSOR Not to be used for the other use.

SAINSBURY’S PEANUTS Warning: contains nuts.

AN AMERICAN AIRLINES PACKET OF NUTS Instructions: open packet, eat nuts.

LOSING WEIGHT THE EASY WAY

Here’s the guide to calorie-burning activities and the number of calories per hour they consume.

Beating around the bush 75

Jumping to conclusions	100
Climbing the walls	150
Swallowing your pride	50
Passing the buck Throwing your weight around (depending on your weight)	25
50-300
Dragging your heels	100
Pushing your luck	250
Making mountains out of molehills	500
Hitting the nail on the head	50
Wading through paperwork	300
Bending over backwards	75
Jumping on the bandwagon	200
Balancing the books	25
Running around in circles	350
Eating crow	225
Tooting your own horn	25
Climbing the ladder of success	750
Pulling out the stops	75
Adding fuel to the fire	160

Wrapping it up at the day’s end 12

To which you may want to add your own favorite activities, including:

Opening a can of worms 50

Putting your foot in your mouth 300

Starting the ball rolling 90

Going over the edge 25

Picking up the pieces after 350

Counting eggs before they hatch 6

Calling it quits 2

Catley Priory

by Christine Ayre

Nothing now remains of Catley priory, except a few mounds in a field, a moat, and a fish pond. The field is inhabited by sheep, rabbits, and pheasants, instead of the monks and nuns of the Gilbertine order.

St. Gilbert, a priest of Sempringham abbey, a much loved and very popular man, founded the Gilbertine order in 1131. From this several houses sprang up around the Country. One of these was Catley, situated on Catley island, near the Villages of Walcott, and Billinghay. Most of the houses of the Gilbertine order were in Lincolnshire, but a few are found in other parts of the Country including Wattam, and Beverly in Yorkshire. Not all the Gilbertine houses were mixed, the mixed ones included Catley, and Haverholme. Canons only were housed at Holland Bridge, Lincoln, and Stamford.

The Gilbertine priory of St. Mary, Catley, was founded as a double house in the reign of King Steven, between 1148, and 1154 by Peter de Billinghay. He endowed it with the whole island of Catley, the site of a grange and some arable land at Walcott; the church of Billinghay, and the chapel of Walcott; pasturage for 400 sheep in the two townships, and rights of fishing on Walcott marsh.

The number of inmates was limited by St. Gilbert to sixty nuns and lay sisters, and thirty-five canons and lay brothers. A strict set of rules ensured that no contact was made between the sexes, they had separate buildings but shared a church, this was divided by a wall high enough so they could not see each other, but both were able to hear and celebrate mass together. The most beautiful part of the church was for the nuns use. The nuns were guarded at all times, and could only communicate with the monks by two turntable windows, which would only allow a thumb and two fingers through the gap. The windows were also covered by an iron plate.

The order brewed their own ale, but should the sisters run out of ale, the brothers also had to drink water. Any excess ale was sold at the inn in Digby village. The sisters also had to do all the sewing and laundry for the priory. The brothers habit was of blade with a white cloak and hood fined with lambswool, the sisters wore black with a white butterfly type cap.

In 1182 Alexander de Crecy gave to the priory 4 bovates of land in Dunsby at a yearly fee of 10 shillings, 20 acres of land at Cranwell Dunsby and Brauncewell.

In 1184 The priory was given land at Digby, Dorrington, and Brauncewell also the rights to sand, clay, turf and eels from Digby marshes. Fish and eels were the staple food of the inmates of the priory, together with shellfish, and deer.

Catley was always one of the poorest houses of the order of Sempringham, in 1291 it had an income of about £55. In the fourteenth century the average yearly sale of wool was seven sacks, which added considerably to the income of the nuns and canons.

The thirteenth century seal of the priory is a pointed oval, and represents the Virgin, with a crown, seated on a throne, the Child on the left knee; on a base under an arch, the prior kneeling in prayer to the right. The legend is – PRIORTUS . DE . CATTELE

In 1303 the prior held half a knight’s fee in Brauncewell, one-third in Dunsby, a quarter in Billinghay and Walcott, a quarter in Digby, one-fifth of half in Ingleby, one-fifth and one twentyfourth in Hemswell, one-eighth in Dorrington, one-tenth and one-sixtieth of one in Glentworth, and one twenty-fourth of another. In 1401 he also held one-seventh in Scopwick.

In 1338 the house was in serious financial straits, and Edward III pardoned the payment of the tenth, £5 11s 3 ¾d. Seven years later the prior, canons, and nuns again petitioned to be excused from tax. They urged that by fires and murrain of their animals they were so impoverished that they had neither crops nor goods for their sustenance. The loss of tenants and the mortality among their sheep after the Black Death no doubt greatly increased the embarrassment of the priory. The house was surrendered to Dr William Retre by the prior, William Swift, and two canons on 25th of September, 1538. Pensions were also granted to the prioress Margaret Gastwek, and four nuns. In 1535 the net valuation of the property amounted to £34 18s. 6d., of which £8 4s. 10d. was drawn from the rectories of Billinghay and Digby. The demense lands of the priory were only worth £4 a

year. In the hands of the crown bailiff four years later the property brought in £38 18s. 11d., and included, besides the rectories, the grange of Scopwick, and lands and tenements in Billinghay, Timberland, Walcott, Digby, Ingelby, Saxilby, Lincoln, and Rowston.

Robert Carr of Sleaford, who’s father was a rich merchant of the staple, purchased the house and site of Catley, besides several granges belonging to other Gilbertine houses for £400, and a rent of 11s 10d for Catley on December 24th, 1539.

An Autumn Day

I’m sitting at my computer trying to think of something to write for the LincPIN. Here in my upstairs sittingroom are many distractions, my eyes are drawn to the windows, to look out on a perfect Autumn day. From the front window I can see down the drive to the road, and see the farm traffic passing by, loads of corn and straw being gathered in for the coming Winter. Looking out of the back window I look on the abbey field. The field slopes up from my garden and is inhabited by pheasants, rabbits and hares, also about 200 sheep, all peacefully doing their own thing. The day is peaceful and calm, not a breath of wind, the sheep are sleeping, my dogs are sleeping, Ben woofing in a dream, I start to nod off.

The peace is suddenly shattered by the sound of voices, and the sheep take to their heels. In seconds the abbey field is empty of birds, and animals. From my windows at the side I can see the latest batch of tourists descending from a coach down by the road. A motley selection of people start to wend their way up the track at the side of my house. This is a new approach to tourism dreamed by the Lincolnshire Council. Someone thought it was a good idea to organise trips to all the abbey sites in the area, but nobody told the eager tourists that they would be seeing a selection of empty fields. Today’s tourists are the same as all the others. They have obviously been to see other abbey sites before reaching Catley, and have reached a stage of extreme apathy, no doubt thinking longingly of home and wondering why they ever started out on this trip, and would it ever end. I take great delight in watching these people. First today comes a rotund vicar with a beard and a red face, followed very closely by a blonde haired lady past the first flush of youth, wearing a red dress and white stiletto heeled shoes. Next is a snake hipped spotty faced youth wearing skin tight jeans, his legs so long and thin any grasshopper would be proud to own them. He must grease his legs to get them in the jeans. His t shirt bears the legend I’m anybody’s. I wonder if anyone has taken him up on the offer. His face has a glazed expression as he listens to some music on headphones. Next come a couple who are ready for anything, dressed in check shirts, moleskin trousers and big hiking boots. They have rucksacks, binoculars, cameras, and maps. Why would they want maps to walk round a

field? Bringing up the rear is an elderly lady in tweeds and sensible shoes. She looks rather travel weary.

The first obstacle they encounter is the sheep netting over the gate. The vicar waits to hold the netting down while all the ladies get over. Unfortunately the lady in the tweeds catches her foot in the netting and falls fiat on her face in the thistles and sheep droppings. In the vicars haste to rescue the poor lady he lets go of the netting and leaves the lady with the stilettos straddled over the net. This causes some consternation and takes some time to sort out. The spotty youth has noticed nothing amiss, steps over the netting as if it wasn’t there and by this time is halfway up the field, his huge feet crushing the wild flowers as he goes. The couple in the big boots are eagerly consulting their maps and taking photographs. The vicar more red in the face than ever gathers up the ladies, the blonde clinging onto his arm, and they all disappear up the field. After about fifteen minutes I see them again on the horizon, the mapreaders striding out purposefully while the youth wanders along twitching and jerking in time to his music. The vicar shepherds his little band of pilgrims back down to the waiting coach, the lady in red clinging to his arm as she totters along in her once white high heeled shoes, now sadly stained by the grass and spiked along the heels with sheep droppings.

They all wander dispiritedly back to the waiting coach, no doubt wishing they were anywhere but Catley. After a little discussion about who should board the coach first, and a head count, they realise the snake hipped one is missing. The vicar sets off back up the field to find him and after ten minutes he returns with the recaptured youth. Everyone boards the coach and they disappear in a cloud of dust and diesel fumes.

The sheep and pheasants return to the now peaceful Abbey site. I go back to racking my brain, wondering what to write for the LincPIN. Hils will give me hell if I don’t come up with something.

catley@globalnet.co.uk

Linc Pin Volume 2 Issue 1

The Lincolnshire Post-Polio Information Newsletter Volume 2 – Issue No. 1 – October 1998

CONTENTS

This issue includes articles from our online library (our newsletter is distributed by post to many subscribers who do not have Internet access). Rather than duplicate the articles in this online edition of the newsletter, I have instead just included links to the library articles. I have assumed that those of you who already have the articles would prefer not to have to print them again if you wish to print this newsletter for your own use. However, if you are printing copies for further distribution we would ask you to print copies of the articles as well.

Editorial by Hilary Hallam

Report on AGM talk by Dr. Alan Whiteley, Queens Medical Centre, University Hospital,

Nottingham.

Control Your Destiny II With Dr. Jacquelin Perry Reported by Mary Clarke Atwood

Conserve To Preserve PPS Muscles Reported by Mary Clarke Atwood

How a ppser avoids upper body pain and A Heated Rice Bag Mary Clarke Atwood

Life with a Polio Survivor Dave VanAken

Supporting Weak Joints Grace R Young, MA, OTR

Fibromyalgia Is Common in a Postpoliomyelitis Clinic Daria A. Trojan, MD, MSc, Neil R.

Cashman, MD

Dr. Henry writes about Debilitating Fatigue Henry Holland MD

Contributions from Polio Survivors

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

Conference Information

Contact Information

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

Lincolnshire Post-Polio Network

Editorial by Hilary Hallam

Here we are in October already. Firstly please accept my apologies for this newsletter being a little late but there has been a lot going an in the past month and as a PPSer I have limited energy.

Welcome to all the new members especially those overseas. The work we do is only possible because of the membership fees and donations received. We have much planned for the future as soon as finances allow. If you are not already a member and reading this then we ask that you consider joining us.

The Annual General Meeting was an excellent day. We were so pleased to welcome many polio survivors and their families from eight other counties in England, four from Wales and two from Scotland. The years reports were read and approved and voting took place. The results are Chairman – Lynn Hobday, Vice Chairman and WebSite Administration – Chris Salter, Treasurer – Jean Tapper, Secretary – Hilary Hallam. Committee Members are Christine Ayre, Jeff Boss, and Phil Bilton. Following the meeting, and over a Buffet Lunch, we were joined by The Mayor, Councillor Bud Robinson and his Lady Mayoress Ruth Robinson and from letters and phone calls received they must have talked to everyone them. Their support, understanding and interest in Post Polio and the problems that we have getting a diagnosis, advice and treatment in the UK was invaluable. We were also delighted that Helena Edwards, Sue and John Wakeiing from the Leicestetshire Post-Polio Network were able to join us. We would also like to thank Councillor Barry Fippard from the Community Health Council for his presence, interest and assistance. The Mayor opened the afternoon’s proceedings with a short address about what they had learned that day and then left to set off a Duck Race for Meningitis.

Lynn Hobday then introduced our speaker saying:

In Dr. Whiteley we have found a consultant sympathetic to our needs for medical help and advice. He has instigated a Post Polio Clinic at Queens Medical Centre. He and his medical team are seeing patients and collecting much information on the problems that polio survivors are having in later life. There is no doubt in my mind, that in time, Dr. Whiteley and his team will be giving help and advice that we all need to cope with post polio problems and his clinic will be respected throughout the world.

You will find a report on the next page of Dr. Whiteley’s talk followed by some of the questions.

Eleven of us joined together for an evening meal at the Halfway House Inn near Swinderby and we talked for hours about all aspects of Post-Polio. I think that the most important point that came out was that those who care for us – our families – are having a equally difficult time in coping with all that is happening. They do not have the condition and can only guess at how we feel and what we are going through and are not always sure what to say and when. As Polio Survivors we must remember this and share with them more about how we feel and listen to how they feel. The medical profession should also take note that the majority of care and treatment that all people with a chronic condition receive is given by our carers and that their needs must be included in plans for the future. This fact is coming out in many PPS Support Groups and at the recent PPS Retreat for the Central Virginia PPS Support Group they had a caregivers workshop. Dave VanAken has written Life with a Polio Survivor (page 13) and shares it with us.

On Saturday 3rd October we had a stand at the Neurological Support Group Conference at Queens

Medical Centre and were surrounded most of the time by delegates requesting information on Post Polio, many who did not know the condition existed.

We would like to take this opportunity to thank all the contributors to our newsletters and for the information that we are able to put up on our WebSite. Special thanks in this issue to Dr. Daria Trojan for another article brought back from trip to Canada in July. To Grace R Young MA, OTR for permission to use her Monthly Tips from her WebSite – next newsletter will all be about tips for coping during holidaytimes. To Mary Clark Atwood from the Los Rancho Amigos PPS Group for sending us her newsletters and permission to print articles she reported on.

Next newsletter – information from PPS Conference in Jena, Germany and more from our members. All contributions financial and items for newsletters always gratefully received.

Dr. Alan Whiteley, Consultant Neurologist, Queens Medical Centre, University Hospital, Nottingham

Talk given at our Annual General Meeting

I am honoured to come to speak to you all. It is always very nice for doctors to come and speak to the actual sufferers of the condition. We find it very instructive because we get first hand information.

Now as you know the Post Polio Syndrome is a very mysterious condition.You know it first hand but for the medical profession it has not gained much acceptance in the general medical fraternity, because it is difficult to diagnose and difficult to treat.

The crux of the Post Polio Syndrome is that the sufferer has a polio virus infection, gets better, remains stable over several years and then deteriorates in a number of ways. That is basically how the condition is defined.

The actual infection is a viral infection but we don’t know much about the clinical picture at present because it’s all history now. We just don’t see cases of polio. If a case of polio came to Nottingham there would be panic and pandemonium. I myself have not had first had experience of the virus.

The virus gets in your mouth and your nose and then it multiplies in your body. Ninety per cent of people don’t even know they have had it. Then some people get a sort of flu-like illness, where they feel a bit feverish and a bit off-colour. It’s the minority of people that get the paralysing variety. The reason for this is unknown.

The encephalitic type then infects the cells of the brain. It attacks a lot of cells in the nervous system but the peculiar thing is that it attacks the cells called the Anterior Horn Cells or the motor neurones.

The Anterior Horn Cells lie in the spinal cord in the anterior horn. That’s why they are called anterior horn cells. These cells control the muscles and it is thought that the virus for some reason gets in the end branches of the cell and then travels up to the cell body and knocks out the cells which causes the paralysis. So when you had an attack of paralytic poiiomyelitis, you would get ill, you would feel rotten and then you would notice you were not moving your leg or your arm. You would go to hospital and you would be obviously treated depending on how severe the paralysis was. On the whole you would start recovering.

Recovery would occur if the cell itself had not been killed but just wounded. But if the cell actually died, recovery would occur because another cell would actually take up the muscle fibres of the dead cell by growing new connections.

It’s all a question of percentages. If you lose 10% of your Anterior Horn Cells you will recover completely. If you lose 20% you will recover. When you start getting down to over 50% of your

cells then you can’t recover that much, so you will notice that the muscle is thin and weak.

I am sure everybody has their own individual peculiarities but I think that you can roughly say there are three types of post polio syndrome.

The first one is the loss of the muscle fibres. That’s called post-polio muscular atrophy. The sufferers start losing muscles and become weaker and the muscles become thinner. It usually is in muscles that have been badly affected but it can be in muscles that have only been mildly affected. For some reason there is a process that makes those muscle fibres just not function. And several things can do that.

Firstly the Anterior horn cells just die because of natural aging, or because they are worn out with all the extra use they have been put under or because there is a bit of polio virus still there, that is attacking them still. No-one really knows.

The other reason why you can grow weak is because the new connections to the muscles start contracting and the terminal axons die back. It can also be due to a deficiency of the chemical that passes from the end of the nerve to the muscle. We can’t treat the actual cells dying but a possible drug would be Riluzole.

We can attempt to increase the acetylcholine by a drug called Mestinon (Pyridostigmine). As far as I know that has not proved to be very affective.

The second type of post-polio is the fatigue, the muscle aching, cold intolerance, sleeplessness, dull brain and those sort of symptoms, it’s very difficult to know why those symptoms come about and it could be a different cause from the muscular atrophy. It’s understandable in a way because when you have the encephalitis it’s not just the anterior horn cells which are damaged. There are a lot of cells which are damaged but at the moment those cells are not understood. There are several thoughts about it. One thought is that there is something wrong with the brain stem. The brain stem is this bit of the brain between the brain and the top of the spinal cord, which is the system that keeps you awake, vigilant and alert. Brain Scans in some people find little spots. It maybe that those spots represent damage. The other thought is that it is something to do with hormones and somehow the polio has affected the pituitary gland.

There is another condition that is very similar to this sort of post polio syndrome and that’s Chronic Fatigue Syndrome which is very abundant and thousands of people have it. That again is a complete mystery. If you were to write down your symptoms of PPS and their symptoms of CFS there would not be much difference apart from the fact that you had polio and some of your muscles are wasted. My own view is that CFS will be some sort of disturbance of the chemicals in the brain. The brain is a huge computer and it works on a mixture of electricity and chemicals. These chemicals will set the activity level and if there were a mystery hormone that was out of tune it would cause the CFS condition and likewise with the post polio.

For treatment of fatigue etc, medically all we can suggest is looking after yourself, physiotherapy, etc. The pills are low doses of anti-depressants at night such as amitryptaline and experimentally other hormones such as bromocriptine to stimulate the hormones in the brain are being tried. The third type of post polio syndrome is associated symptoms causing a deterioration such as arthritis etc. In this category is respiratory failure at night where the breathing can get very slow and

you do not get enough oxygen and your carbon dioxide rises. That means you have a very restless sleep and in the morning you feel terrible with a headache and throughout the day you are drowsy and muddle headed. That is quite simply remedied by having a mask on at night to force enough oxygen into your lungs and take away the carbon dioxide. That sort of thing is assessed at specialist units.

Question 1.

We live in Devon, how do we get in touch with Post Polio specialists when we live in other counties? Comment. This question is one that comes from nearly everyone who contacts us, “Who

should my GP refer me to?”

This is very much a neurological problem. It depends on the interest of the neurologist and some are going to be interested in muscle disease and some are not and its pot luck whether in your area you are going to find someone that is sympathetic.

Question 2.

What can be done to raise the awareness of PPS generally within the medical profession and more particularly within hospitals?

Well nagging I suppose is the answer. You just nag away.

Question 3.

We have had consultation, we have had the tests, now we are waiting for the next bit and nothing has happened.

The next step is you get into a program of maximising the use in the limbs and that to a certain degree can be done by the physiotherapist, but physiotherapy isn’t really the whole answer. We really need drugs to correct if your cells are dying off with your hormones. What we need is medical research to get to the problem and treat it effectively.

Question 4.

We feel that Physiotherapists have actually been giving us the wrong advice the wrong treatment and some of us have actually deteriorated from it. There appears to be no training in PPS for physiotherapists. How do you suggest that we get the awareness of our condition to the medical profession? We have written to all the Colleges of GP’s, Physiotherapists, OT’s etc. promoting the awareness of our Network. The Neurological physios have taken a great interest but what about the rest of the physiotherapists?

I find physiotherapists very daunting they are usually very powerful women. (Much laughter and memories of their polio physiotherapists). It’s a slow process. In the end you have to go and see a physiotherapist and say the recommended treatment by a physiotherapist for PPS is this, what do you think? It’s really going to have to be on a one to one basis.

Question 5.

Could we not get a physio from Queens Medical Centre to take an interest?

Information 15.10.98 is now – Yes, we are making progress here.

Question 6.

I have been referred for an EMG test because a high blood test indicates high muscle destruction. What muscles are tested and what treatment will follow?

You can measure muscle destruction by an enzyme test that’s called a creatine kinease. In some people this enzyme seems to be raised and in others it is not. Myself I don’t quite know what that means. You have then to do the EMG. You know what that is, you have probably had them done. They stick a needle into the muscle. You can look for evidence of old polio, sometimes evidence of new muscle disease.

Question 7.

Is there any way to help myself overcome fatigue and tiredness? Is there any way to keep the strength I have left?

Well, yes that is what you put in your Newsletters and on your Internet Site all the time. You have got to conserve energy, you have got to make sure you do the things that you enjoy doing and not waste your time doing the hoovering or things like that. In the Post-Polio Syndrome there is a concept that if you overtire the muscle that the muscle will die quicker. The thought is that you

should not overtire yourself, that you exercise to within a sensible amount and then you just stop.

Question 8.

There is a problem in that we do not have Occupationai Therapists with awareness of PPS who understand the need for this type of equipment. Until we have a diagnosis they will not listen to things like stair lifts, electric wheelchairs and alterations to our houses. We are not getting the medical support that these items are necessary.

I sympathise.

Question 9.

The trouble is that some of us have gone for 3, 5, 11 or more years trying to get a diagnosis. One member in Scotland has gone through eleven consultants without getting a diagnosis until we sent him information on post-polio. He took this to his GP, he was referred back to the neurologist who said that he had no idea that the condition existed.

That is a slap on the wrist for neurologists then. There is a sort of inertia in the medical profession. It is a slow process to change attitudes. It’s like ME which is only half accepted. There are lots of conditions that don’t have a test to prove it. If you don’t have a test then its a matter of opinion and doctors are all different in their opinions.

Question 10.

If a 60 year old man with PPS symptoms for the last 15 years had non paralytic polio diagnosed at the age of 12 came to you would you perform further EMG’s and would you want to perform muscle biopsies?

You can’t answer questions like that without seeing the patient and seeing what the old EMG’s show. It’s very difficult to make diagnoses without seeing the patient.

Question 11.

A member in Lincolnshire has been unable to get an NHS referral to you. What do they do about this? We want you to come out as a PPS specialist so that the doctors will accept that you are the person to take referrals.

I have done that now, and will be making this information more widely known. There are other GP’s in the practice. Doctors take the least line of resistance.

Comment. As most of us have experienced.

Question 12.

Would you write to a neurological publication so that other neurologists know you are specialising?

I have got to have something to say. It is no good just saying that this condition exists. I will do my best there.

Question 13.

Given that further training in this speciality would be helpful to you and your staff, what other training might you be able to obtain through NHS resources? Is there any way we can help you?

The usual way, you go to conferences. The best thing would be to have a conference in England. Comment. There is a 3 day conference in Jena in Germany at the end of October. Is there any possibility of you going?

It would be best to have it in Britain if you want British doctors to go. If you make the conference attractive enough? Aim it at neurologists. Doctors have to attend a certain amount of lectures to practice.

Question 14.

If you have an EMG that shows old polio and the GP writes to you for diagnosis and or help to manage the illness what would you advise?

You have to see a patient, have hands on to make a diagnosis, so you must ask your GP to refer you to me.

Question 15.

We do now know that you can get referral from one health authority from another.

They are going to change the way the health service is funding next March. All this paying may just disappear.

For Queens Medical Centre contact information see the entry for Dr. Alan M Whiteley, Consultant Neurologist in our Directory of Clinics and Health Professionals.

QUOTABLE QUOTES

ON POETIC LOVE

When an eel bites your thigh And the sting makes you cry That’s a moray.

ON PUBLISHING OR PERISHING

I am returning this otherwise good typing paper to you because someone has printed gibberish all over it and put your name at the top.

English Professor, Ohio University

Control Your Destiny II With Dr. Jacquelin Perry

Reprinted with permission from Rancho Los Amigos Post-Polio Support Group Newsletter September 1998

Reported by Mary Clarke Atwood

World renowned polio specialist Dr. Jacquelin Perry was the featured speaker at the Rancho Los Amigos Post-Polio Support Group meeting on December 6th 1997.

Since retiring after 40 years of dedicated, full time county service, Dr. Perry continues her work at Rancho but in a new capacity – as a volunteer. Because she continues to believe that post-polio syndrome is under-treated by the general medical community, the Rancho Post-Polio Clinic remains open and she continues as chief of Post-Polio Services. Dr. Perry also volunteers as medical consultant for the Rancho Pathokinesiology Lab. When the opportunity arises for her to speak at worldwide conferences or lectures, Dr. Perry uses the occasion to educate other medical professionals about PPS. We appreciate this annual opportunity for her to educate us, the polio survivors.

As time passes it is becoming more and more clear to Dr. Perry that we as polio survivors have more control over our future than anyone else. Therefore, she chose to repeat last year’s title for this talk, “Control Your Destiny II”.

This presentation was based upon questions submitted to Dr. Perry. The following report focuses on her response to one question concerning the natural progression of postpolio syndrome. In succeeding issues we will present Dr. Perry’s answers to the other questions from this meeting. Question: What is the natural progression of post-polio syndrome? Will a person return to the same degree of paralysis that was experienced at onset?

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

1. Control from the brain.

2. Sensation from the periphery, the lower motor system from the spinal nerve cell (anterior

horn cell) down to the muscle.

3. The third system is the most important for people with PPS because if you lose the nerve,

you lose the muscle. We talk about muscle weakness, but polio is actually a nerve disease

that damaged or killed anterior horn cells. This makes a lot of difference in terms of

exercise, etc.

Acute Polio

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

Recovery

Recovery from polio entailed all three methods of recovering function:

1. Neuro recovery.

Between 12% – 91% of the nerve cells that were injured – not killed – by the polio virus recovered.

2. Axon sprouting.

New branches of the remaining nerve cells were sent out to adopt the orphaned muscle fibers. The result was that each nerve was then doing 50% more work or even up to four times as much as normal.

3. Hypertrophy.

The muscles enlarged themselves up to about 400% so they could increase function.

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

Research

During the 1940s Bodian traced the polio virus in the motor nerve cells of monkeys. He found that polio, a systemic disease, affected 95% of these cells by either injuring or destroying them. Research confirms that there is some obvious weakness as a result of polio:

• Agre found that polio survivors with no current symptoms had only 80% of normal muscle

strength. Symptomatic survivors had 60% or less muscle strength compared to the normal

group.

• Following a four year study Grimby reported a normal 2% – 5% loss of muscle strength in

asymptomatic polio survivors, but for symptomatic survivors this loss may be as high as

13%.

• A study by Grimby confirms that weaker muscles work longer and twice as hard.

This research says that it is necessary to protect this overused muscle system. The muscles that are grade 3, 3+, and some 4s are getting all the exercise they can tolerate. In order to maintain this function these muscles must be protected from overuse.

Now

For many, many years polio survivors have been working with a damaged neuro-muscular system that keeps working harder than ever to meet normal demands. We need to appreciate the fact that

each anterior horn cell innervates several hundred muscle fibers and the surviving horn cells have been doing 50% more work than normal. Plus it appears they don’t like being overworked. Because of this over-use of the neuromuscular system, new weakness is now developing. Survivors may develop new weakness not only in “polio” muscles but also in other muscles that did not seem to be involved during the acute phase.

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

Advice

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

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

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

• a person with normal muscles will recover fully from muscle fatigue in five minutes.

• an asymptomatic polio survivor will recover in ten minutes.

• a symptomatic polio survivor will have partial recovery in five minutes but then have further

loss.

So it becomes necessary to make lifestyle modifications. Dr. Perry advises patient to:- 1. Figure out what you don’t have to do.

2. Get others to do the heavy work.

3. Break up work periods with rest periods.

4. Don’t pride yourself on working harder.

5. Pain is a sign of injury and overuse, so just don’t let it happen. Figure out what causes your

pain and don’t do it again.

How You Can Help Yourself

Dr. Perry’s general activity guideline is that a polio survivor can do anything as long as it causes:- 1. NO PAIN and

2. NO FATIGUE THAT LASTS LONGER THAN 10 MINUTES.

Survivors can control their destiny by avoiding muscle overuse strain. But, she cautions: Polio survivors who overuse muscles will lose strength.

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

We deeply appreciate Dr. Perry’s responding to all of our questions during and following her talk. As a small token of our appreciation, a poinsettia plant was presented to her before the meeting.

Articles by Dr. Perry and biographical details can be found in the Lincolnshire Post-Polio Library in the catalogue entry for Perry, Jacquelin, M.D., D.Sc. (Hon).

Conserve To Preserve PPS Muscles

Reprinted with permission From Rancho Los Amigos Post-Polio Support Group Newsletter September 1998

Reported by Mary Clarke Atwood

An enlightening program on muscle care was presented at the February 28th 1998 meeting of the Rancho Los Amigos Post-Polio Support Group in Downey, California. The featured speakers were members of the Rancho Los Amigos Physical Therapy Department: Jennifer Fitzpatrick, SPT, and Katy Schultz, SPT, under the supervision of Maureen Jennings, PT, from the Rancho Polio clinic and Eirik Blydt-Hansen, PT, APT.

The primary focus of post-polio rehabilitation is to eliminate strain on muscles, joints, and ligaments. In this report, polio survivors will learn how to monitor activity levels and achieve these goals with lifestyle modification, stretching exercises, and using functional devices when necessary. These strategies will help preserve muscle function. “Conserve to preserve” is the name of the game.

Lifestyle Modification

The key for people with PPS is to understand that ‘pushing through’ pain and fatigue is no longer acceptable. Rather, it is important to realise that pain and fatigue are signs that an activity is too stressful for the muscles and may lead to permanent damage and weakness. Prolonged or repetitive

high demand activities which result in pain and fatigue must be moderated or discontinued. One way to monitor muscle overuse is by keeping a log of daily activities. This will help pinpoint activities causing excessive fatigue and which may need to be moderated or avoided. A survivor may be able to continue performing some activities but with frequent rest periods and monitoring. Studies have shown that resting for twice as long as the activity time may result in improved endurance and avoidance of fatigue. If these changes are made early, strength may be recovered enough to bring the muscles up to a more useful level but not for excessive strain. [Dr. Jacquelin Perry’s activity guideline is that a polio survivor can do anything as long as it causes (1) No pain and (2) No fatigue that lasts longer than ten minutes.]

Exercise ???

Many people with PPS want to exercise to strengthen weak muscles, but in most cases this is contraindicated. PPS muscle weakness is not usually due to lack of exercise but rather from damage due to overworked muscles in everyday activities. In rare cases, minimal strengthening exercises have been beneficial in some muscles once major lifestyle changes have reduced the strain from everyday activities. Although there have not been any studies on stretching for PPS, most sources advocate maintenance of normal range of motion to preserve function.

Stretching Exercises

Muscle weakness and tightness vary in each person with PPS, so there is no general program appropriate for all – an individually tailored program is best. Stretching exercises should be gentle and focus on tight, overworked muscles.

It is important to understand that all contractures (joint or muscle tightness) are not bad. For instance, calf tightness can help increase stability during walking for persons with weak calf muscles. If this tightness were stretched out, it might decrease stability and result in the need of a brace.

A common contracture that is not beneficial is hip fiexion tightness (inability to fully straighten the hip). An elective exercise would be lying on the stomach for 15 minutes each day to reduce existing hip flexion tightness and help prevent new or increasing tightness.

Gentle range independently of motion exercises performed or with assistance can be beneficial for

most survivors. These consist of gently moving each joint through its available range – avoiding fatigue or pain. The following general range-of-motion exercises are an example. Each exercise may not be appropriate for all individuals. If appropriate, each exercise should be performed SLOWLY and very gradually. A survivor might start with as little as one repetition and gradually work up to as many as 5 to 10 repetitions daily, spread throughout the day if necessary. The keys are avoiding fatigue, increased weakness, and pain.

• Make circles with each ankle while sitting or lying down.

• While sitting, straighten one knee, lifting the foot from the floor, then lower slowly.

Alternate left and right legs.

• Slide/raise one knee up towards the chest, then lower slowly. Alternate left and right legs.

• Slide one leg out straight to the side, then return it to the middle. Alternate left and right

legs.

• Bend hands up towards the shoulders then straighten arms back down to your sides.

• Shrug shoulders up towards your ears, then slowly lower.

• Lift one arm straight out in front, then lower. Alternate left and right arms. (This is easier to

do lying down.)

• Lift one arm out to the side then slowly lower. Alternate left and right arms.

• With elbow bent and held at your side, slowly rotate hand in toward stomach and then out to

the side. Alternate left and right arms.

Functional Devices

Many polio survivors find it difficult to retum to the functional devices they worked so hard to get rid of in childhood. But many of these devices can help take the strain off muscles and joints:

• Orthosis or brace

This can provide protection and assistance to specific weak or painful muscles and joints, and may allow the person to continue walking.

• Walking Aids

Crutches and canes are good ways to protect painful overused leg muscles and joints. These can provide a way to transfer some of the body weight to the arms and decrease the work of the legs, hips, and the lumbosacral spine. However, if there is any pain or weakness in a person’s arms, these walking aids are inappropriate because they may lead to overuse and further weakness.

• Mobility Aids

Motorized wheelchairs and scooters can provide independent mobility. However, some scooters can he hard on arms and shoulders.

Manual wheelchairs are rarely prescribed for polio survivors because of the high strain they put on the arm muscles.

• Reachers

A variety of reaching devices can be helpful for a person with weak arms.

All of these devices decrease demands and help protect weakened muscles thus prolonging the person’s ability to perform functional activities.

Anti-Inflammatory Medications

Overuse of muscles can cause swelling and inflammation. These may be reduced by the use of NonSteroidal Anti-inflammatory Drugs such as Ibuprofen. (Consult your physician before taking any medications.) But keep in mind that these drugs only mask the pain, they are not a cure. Dr Perry

says, “Pain is a sign of injury and overuse, so don’t let it happen. Try to determine what causes your pain and avoid it.”

Conclusion

Unfortunately, the popular phrase “Use it or lose it” does not apply to PPS. Polio survivors must reprogram their minds to think “Conserve to Preserve.”

Think of your muscles as money. You have a certain amount that is available for use each day, which is based on your income. The actual amounts you use during each day are your expenditures. You also have a savings account or reserve of muscles. If your lifestyle continuously exceeds your daily income, then you begin depleting your savings account until there is no reserve. Continuing at this pace will lead to decreases in function as your muscles are “repossessed” – one by one.

Lifestyle modification is the way to protect your muscles so they will last. Functional devices can help take the strain off weak muscles and joints if appropriate. Remember, a muscle has only so many contractions within its lifetime, and once used up, there is no turning back.

For More Information, Contact: Rancho Los Amigos Medical Center Physical Therapy Department 7601 E. Imperial Hwy.

Downey, California 90242-3496 Tel. (562)401-6847

Fax. (562)401-6052

An audio tape of this complete presentation is available for $7.00 including US postage from Ken Baragar – 817 Irving Place, Anaheim, CA 92805-5025 Tel 714/535-2710.

How a ppser avoids upper body pain

I have been able to solve my problems of arm, shoulder, and neck pain by keeping my muscles well supported and by listening to my body. As soon as I feel any pain in these areas I stop what I am doing and lie down. Usually it takes about 20 minutes rest and my muscles are back to normal (as possible).

Here are the ways I support my upper body muscles:

• Whenever possible I sit in a chair that has arms and a high back. The arms on many chairs

are too low to provide good support. I noticed I would lean my upper body toward the

armrest for support. To solve this problem I had two 3x3x12 inch cushions made to increase

the arm height and provide better support for my arms and shoulders. When the cushions

will not fit properly on top of the armrest, I just place the cushions diagonally across my lap.

• A lumbar pillow (Jay Active backrest) provides additional back support. A small pillow

could also be used.

• For car travel I had two 4x4x14 inch cushions made. I attach one to the center armrest with a

strap and I place the other one diagonally across my lap. When I ride in a car that has no

center armrests, I place both cushions across my lap.

• Neck support is also very important in the car. I had a neckroll made with straps and Velcro

to attach to the headrest. The correct size was determined by rolling up a hand towel,

securing the ends with rubber bands, and then attaching it to the headrest with more rubber

bands. (I experimented with towels of different thickness to find the size that gave the most

comfortable support.)

I have found that the arm cushions and neckroll are wonderful to use when traveling by airplane

too. I always carry them with me.

A Heated Rice Bag

I created the following device to provide heat for aching muscles or cold feet.

• A heated rice bag feels so good on aching muscles or to warm your cold feet. For neck or

shoulder pain place one on your pillow and lay on it.

What is a rice bag? How can I get one? Easy – – All you need is a hand towel (about 15×24 inches) and 6 cups of uncooked rice (about 2 ½ pounds) and a sewing machine. [Crocheting can substitute

for the sewing.] Directions:

1. Fold towel in half lengthwise.

2. Double stitch across center to form two sections.

3. Double stitch midway across each half to create 4 sections in all.

4. Next fill each pocket with 1 ½ cups uncooked rice.

5. Double stitch outside edge from top to bottom (hold rice back in pocket).

Heat in microwave for 2-3 minutes. Do NOT get it wet. Take care before putting on skin ensure that it is not too hot.

Mary C Atwood,

marwoodca@JUNO.COM

Rancho Los Amigos Post Polio Support Group. Email RanchoPPSG@hotmail.com

Life with a Polio Survivor

from Dave VanAken (DVanAken@aol.com)

Central Virginia PPS Support Group

Weekend Retreat – Sept 26-27 1998

The first PPS retreat was a success for both the survivors and their partners. During one of the breakout sessions, the partners met and discussed life with a Polio survivor. As far as I know, this was the fust time the partners met and discussed how we dealt with PPS and the impact it was having on our lives.

Many of us did not realize the existence of PPS when we first entered our relationships. Yes, we all knew our partners had suffered from polio, some more than others. In my case, my bride was what is referred to as a “passer.” We danced, took long walks, talked most of the night away, and enjoyed the intimacy and love of a new relationship. Polio was talked about, and the possible consequences later (much later) in life. I, as most of us did, respected and admired our survivors, as they had overcome and achieved so much in their life, which added to our love.

We, the Polio survivors and partners, share many common concerns and fears. We are frustrated and angry with this disease that has impacted so much of our lives. Personally, I am frustrated with the disease because it has forced my wife have to choose how she lives her life. Lifestyle management, energy management, and continual choices have become so much a part of our daily lives. Some of this would have come with advancing age anyway, but the PPS has accelerated this change in our lives. My wife speaks of having limited energy presents to use in a day, and she now chooses them wisely, or suffers the consequences. While I am not the one who physically suffers when she overdoes or overextends herself, I am impacted by her choices. Fortunately, she is wise and often

saves a present or two for us to enjoy together.

For those caregivers who also work, the additional burdens of a career or a job add to an already full plate. We, too, have limited energy presents to use, and can get overwhelmed by it all. Who can we say “no” to? Not to our life partners, not to our bosses, so too often it is to ourselves. There have been times when we have overdone, and the caregiver relationship shifts, the survivor must take care of the caregiver. Instead of accepting this shift, the caregiver feels guilty and often presses on. The shift in caregiving is natural and should be accepted as the gift of love that it is.

We fear the future. What will it be like 5 years from now? What if something happened to our partner? Both the survivors and partners fear this the most. For the survivor, this is a terrifying possibility. In some cases, the survivor is extremely dependent – physically, emotionally, or both – on the caregiver partner. The loss of the partner carries not only the significant loss of a life’s partner, but someone who has unselfishly worked to enhance the quality of life lived. Who or how would this void be filled?

From a partner’s perspective, a gaping hole would open in our lives. We have willingly spent our physical and emotional reserves enabling our survivor to enjoy a quality of life. Often we have forgone “outside” activities so the survivor isn’t left behind. Is there enough left in our “life” to be able to cope with this loss and continue?

So how do we move forward? In the strongest of any relationships, the key is communication. Open communication without guilt identifies the fears, concerns, and needs we all have. We must be able to share these openly in order to deal with them. In this open environment, we must take the emotions out of the topic, and talk about the situation, but not the individual. It is important that both partners respect the needs of their partner to express these strong feelings. We have expectations of each other, but do we agree with them? Where I work, we openly speak of our expectations and obligations to other parts and people in our organization. This ensures everyone is on the same page, and we all understand our roles. We can then successfully satisfy the needs and desires in our work relationships. Shouldn’t we have the same levels of respect in our personal relationships?

The PPS support group fills a vital role in helping our survivors cope with and deal with the realities of the disease. The purpose of a support group is to help find a way forward, deal with common problems, concerns, and fears. While we are welcome at the survivor’s meetings, the caregiving partners haven’t had a similar forum. We think this type of support group can help, just as the Survivor’s group helps the survivors. We would like to meet at the same time as the Survivors group – the first Saturday of each month at Sheltering Arms. I encourage both Survivors and partners to attend the support meetings. As my wife keeps telling me, we gain strength from others in similar situations.

If you can’t join us but are Internet active, Gary Utz, a caregiver in Pennsylvania, has started a caregiver internet group, and would welcome your insights, concerns, and questions. To subscribe to the caregiver list, send an e-mail to PPS-cg-subscribe@egroups.com or to the list owner at gutz@alltel.net.

Once we start talking and sharing, the burden becomes lighter for all.

If you are a carer and would like to contribute to a Carers Page in this Newsletter then please write to Marie c/o the LincsPPN address.

GRACE R YOUNG, MA, OTR

As a polio survivor, I have had to make numerous adjustments to my lifestyle for many years. As an occupational therapist at KaiserPermanente in Southern California I had the opportunity to develop

and teach educational programs to several hundred polio survivors over a period of several years. Much of the material was gleaned from solutions applied in my own life, and I also learned a great deal from the participants in the classes.

Each month there will be a new topic relating to conserving your energy, simplifying your work, protecting your joints, or modifying your surroundings – anything which might help to lessen the symptoms of pain and fatigue.

So please bookmark my website and check it every month. Then check out the resource list and explore my favorite websites. And, finally, please e-mail me with your comments and suggestions,

gryoung@pacbell.net

MONTHLY TIP SUPPORTING WEAK JOINTS

Along with wheelchairs, nothing conjures up as much dread as the idea of having to start wearing braces or splints. We may feel that these devices signal “disabled” almost as much as more obvious mobility aids. Yet external devices can compensate for weakness and offer so much relief from pain and unstable joints that it makes a big difference in our energy level. Here are a few examples:

When the quadriceps muscle at the front of the knee is too weak to support the weight of the body during ambulation, the knee may hyperextend (“back-knee”) so that ligaments instead of muscles are providing much of the support during weight bearing. Weakness of other knee muscles can cause medial-lateral instability, where the knee shifts sideways during weight bearing. Problems like these lead to gradual deterioration of the knee joint. Once joints are damaged, they will not be able to regain their original function. Wearing a long leg brace (KAFO – knee, ankle, foot orthosis) can keep the knee joint from shifting during ambulation and prevent further damage.

Weak muscles at the front of the ankle can cause a “foot drop” where you cannot bring your toes upward so your heel hits the ground first. To keep from stubbing your toe and possibly failing, your leg has to lift higher than normal with each step. In this case, a short leg brace (AFO – ankle, foot orthosis) keeps the ankle in a good position, allowing the heel to strike the ground first.

When one leg is shorter than the other, your center of gravity changes with each step you take. This is fatiguing unless the discrepancy in leg length is compensated by a lift, either inside of outside the shoe.

In the hand, weakness in the wrist or thumb muscles can cause you to compensate by moving your arm in ways which quickly fatigue the whole upper extremity, including the elbow and shoulder muscles. Hand splints such as a wrist support or a thumb “opponens” splint place the wrist or thumb in a functional position.

In these and other instances, a properly fabricated brace or splint can support weak joints, maintain normal joint alignment, prevent deformities and joint damage, eliminate compensatory movements, and minimize pain.

If you are concerned about how braces and splints look to others, consider this: Muscle weakness, unstable joints, uneven gait, shifting your center of gravity with each step all cause compensatory motions which make us look disabled. Our difficulties with ambulating, using our arms, etc., appear less conspicuous when the joints are properly supported and held in a functional position. Material Copyright © 1997 Grace R. Young

Grace Young gryoung@pacbell.net

WebSite http://www.reocities.com/HotSprings/4713/ See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

You know you’re getting olderwhen you stoop to tie your shoes and wonder what else you can do whilst you are down there.Lili in Georgia. tweety7777@webtv.net

Articles from our Online Library

The following articles are reprinted in full in the edition of this newsletter distributed via the postal services. If you are printing this web edition for further distribution, please print the library articles as well and attach them to the newsletter.

Title: Fibromyalgia Is Common in a Postpoliomyelitis Clinic

Author(s): Daria A. Trojan, MD, MSc, Neil R. Cashman, MD

Original Publication: The Archives of Neurology June 1995 Volume 52 620- 624

Abstract/Extract:

Objective: To determine prospectively the occurrence and clinical characteristics of fibromyalgia in patients serially presenting to a postpolio clinic. Fibromyalgia may mimic some of the symptoms of postpoliomyelitis syndrome, a disorder characterized by new weakness, fatigue, and pain decades after paralytic poliomyelitis.

Design: Case series.

Setting: A university-affiliated hospital clinic.

Patients: One hundred five patients were evaluated with a standardized history and physical examination during an 18-month period. Ten patients were excluded because of the absence of past paralytic poliomyelitis.

Interventions: Patients with fibromyalgia were treated with low-dose, nighttime amitriptyline hydrochloride or other conservative measures.

Main Outcome Measures: Patients with fibromyalgia had diffuse pain and 11 or more of 18 specific tender points on examination (American College of Rheumatology criteria, 1990). Patients with borderline fibromyalgia had muscle pain and five to 10 tender points on physical examination.

Results: Ten (10.5%) of 95 postpolio patients met the criteria for fibromyalgia, and another 10 patients had borderline fibromyalgia. All patients with fibromyalgia complained of new weakness, fatigue, and pain. Patients with fibromyalgia were more likely than patients without fibromylagia to be female (80% vs 40%, P<.04) and to complain of generalized fatigue (100% vs 71%, P=.057), but were not distinguishable in terms of age at presentation to clinic, age at polio, length of time since polio, physical activity, weakness at polio, motor strength scores on examination, and the presence of new weakness, muscle fatigue, or joint pain. Approximately 50% of patients in both the fibromyalgia and borderline fibromyalgia groups responded to low-dose, nighttime amitriptyline therapy.

Conclusions: (1) Fibromyalgia occurs frequently in a postpolio clinic. (2) Fibromyalgia can

mimic some symptoms of postpoliomyelitis syndrome. (3) Fibromyalgia in postpolio patients can respond to specific treatment.

Title:Dr. Henry writes about Debilitating Fatigue Author(s): Henry Holland MD

Abstract/Extract: As you may recall, several months ago, I wrote about the problems that many polios face with fatigue. Many experience peripheral muscle fatigue which may manifest itself with muscle weakness and/or pain, and others may experience central fatigue which may be experienced with

mental fatigue, increased sleep requirement, difficulty maintaining wakefulness, difficulty with word finding, and emotional factors such as difficulty with anxiety and depression. I mention all this because I feel that central fatigue has been my most difficult problem, and yet this type of fatigue is probably the least understood.

Contributions from Polio Survivors

A tourist in Vienna is visiting old graveyards. Suddenly he hears music. There is no one else around so he starts to look for the source of the music. He finally locates the sound coming from a grave with a headstone marked “Ludwig van Beethoven” 1770-1827. As he listens, he realizes this is the Ninth Symphony but it is being played backward. He leaves and returns with a friend he has persuaded to see for himself this strange happening from Beethoven’s grave. This time it is the Seventh Symphony that is playing but again, it is playing backward. Puzzled, they decide to search out a music scholar and after doing this. they return the following day. By now word has spread and a throng has gathered as the crowd is listening to Beethoven’s Second Symphony, being played backward. Just then the graveyard caregiver ambles up to the group around the grave. Someone asks, ‘What do you make of this?” He replies, ” Don’t you get it?”

Guess now before reading further? No idea? Look here..

from “Lili in Georgia” tweety7777@webtv.net

An English woman, while in Switzerland, looked at several rooms in a large apartment house. She told the schoolmaster who owned the house that she would let him know about renting one of the rooms later. However, after she arrived back at her hotel, the thought occurred to her that she had not asked about the water closet (bathroom). She immediately wrote a note to the schoolmaster asking about the “W.C.,” being too bashful to write out the words “water closet.” The schoolmaster, who was far from being an expert in English, did not know what the initials “W.C.” meant. He asked the parish priest, and together they decided that it meant Wayside Chapel.The schoolmaster then wrote the following letter to the very surprised woman.

Dear Madame,

I take great pleasure in informing you that the W.C. is located seven miles from the house in the center of a beautiful grove of pine trees. It is capable of holding 229 people and is open on Sunday and Thursday only. I recommend that you come early, although there is plenty of standing room. This is an unfortunate situation, especially if you are in the habit of going regularly. You will no doubt be glad to hear that a good number bring their lunch and make a day of it, while others who can afford it go by car and arrive just in time. I would especially suggest that your ladyship go on Thursday when there is social music. Acoustically, the place is excellent.

It may interest you to know that my daughter was married in the W.C., and it was there she met her husband. I can remember the rush there was for seats. The newest attraction is a bell donated by a wealthy resident of the district. It rings joyously every time a person enters. A bazaar is to be held to provide plush seats for all, since the people think it is a long-felt need. My wife is rather delicate and does not go regularly. Naturally, it pains her very much not to attend more often. If you wish, I shalt be glad to reserve the best seat for you where you will be seen by all. Hoping I have been of service to you, I remain, [the schoolmaster]

from Fred Stoermer, Tacoma, WA, USA

God grant me the Senility to forget the people I never liked anyway, the good fortune

to run into the ones I do, and the eyesight

to tell the difference.

from Maureen MHenrik107@aol.com

When I contracted polio and was in the isolation hospital, my parents were told by the doctor, that all the patients he was treating came from clean homes, and that children from dirty homes did not get polio. In the village near where I live, there is a family with the dirtiest kid I have ever seen, they are only washed once a year, and that is done in the stream. Last year when they went to the stream to be washed, there were some geese on the water, so the kids had to go without the wash that year, but these kids never suffer a days illness.

I’m now just collecting my soap, and sponge, I’m off up to the stream for my yearly bath, I’ll beat this illness thing, even if it kills me.

from Christine

It’s not me that has the problem It’s my shoes. !!!!!!

My walking boots used to do 9 miles three years ago but they tell me now that they only want to keep my feet warm in bad weather.

My dancing pumps are nearly as bad. They could go on all night long, discoing the night away, and now after one disco dance where I barely move my feet, they start complaining and ask me to sit down again.

My flip flops tell me they get so cold now they want me to wear thick warm socks to help keep them warm.

My flippers and ice skates have left me a note to say they have left home, but I think they are together up in the attic. Goodness knows what they are doing up there together.

My trainers, well they complain and moan if I use them too much, but you should see the smile on their little faces when I get on my scooter. Great big grins, they sit there up front looking out on the world and smiling at all who pass.

Oh and I forgot my walking boot socks. Well they seem to be happier now. They tell me that they used to hate it inside my walking boots, where it was dark, hot, sweaty and their fluffy bits were

He’s decomposing. he he he he…

squashed. Now they can see the world and keep their fluffy bits fluffy as I wear them to walk round the house and they love keeping my toes warm as toast.

So you see folks.., it’s not me that can’t do what I used to before – it’s my shoes – but they do seem happier now that I have understood them.

Hilary linpolio@legend.co.uk

Salad Dressings and Chili Recipe

Vinaigrettes – Basically, you can use any vinaigrette and cut the oil WAY down. If it’s too strong tasting then add a little water. Sometimes I don’t use any oil. I often crumble a small amount of blue cheese on a salad and then use plain Balsamic vinegar & saft & pepper. Another idea is to use a good salad vinegar (I use Heinz Gourmet Salad Vinegar), then add to sala dry parmesan cheese which is low in calories, salt & pepper, and a variety of tasty ingredients such as; sweet red pepper, purple onions, a few green olives, pickled corn or okra, sliced jalapeno peppers, etc.

Chili – 8 to 10 servings

1 bowl has 250 calories, 18 grams of protein and 7 grams of fat.

½ pound dry pinto beans ½ pound dry kidney beans

1 pound hamburger meat

3 cans diced tomatoes

2 onions, diced

2 green bell peppers, diced

4 teaspoons chili powder

4 teaspoons cumin

1 teaspoon salt

about 2 Tablespoons of flour and some water in a jar with a lid (for thickening) Rinse and drain beans separately, and soak in water overnight in separate pots.

Drain beans and cook separately as they take different amounts of time. I get the beans ready a day ahead and store them in the fridge.

Cook ground beef in skillet, breaking up chunks. Drain in a colander and rinse with hot water…..this removes most of the fat.

Put tomatoes in large pot, add 2 + cups of water and the chopped peppers & onions. Cook covered until vegetables are tender. Add seasonings and taste….sorry, but again most of my recipes aren’t exact. Shake up the water and flour and add slowly to slow boiling mixture in the pot…..stir as you do this until achieving desired consistency of gravy. Then you have to correct the seasonings

again…..usually needs more cumin and salt. When this is done, add the cooked meat and the beans. Recipe makes 8 to 10 servings. I freeze 2 portion servings in plastic ziplock bags which .can be easily thawed for quick meals…. with flour tortillas & a salad. The chili freezes so well that you can’t tell the difference from when it’s fresh cooked.

from Peggy, our member from New Orleans terpeg@mindspring.com

Lincolnshire Post-Polio Library

Articles added since last newsletter with grateful thanks to the authors

Title: You are going to have surgery – A Guide for Polio Survivors LEAFLET Author(s): J. M. Walker, PhD, PT.

Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. 1996.

Abstract/Extract: Discusses Why preparation for any surgery may be important, For what types of surgery is this important?, and What to do when surgery is required.

Title: Polio Survivors as Patients – Guide for Emergency Care & Surgical Health Workers LEAFLET

Author(s): J. M. Walker, PhD, PT, C. McGowan & G. Vardy.

Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. 1966.

Abstract/Extract: Discusses Concerns of Polio Survivors that may require attention, Response to Medications, why special attention is needed, Special

Considerations for the patient who is a polio survivor & especially those with PPS and Important questions to ask of patients in the Emergency Care setting.

Title: Did you have acute poliomyelitis? An Explanation for Polio Survivors about Post Polio Sequelae LEAFLET

Author(s): J. M. Walker, PhD, PT, C. Grant, BSC(Physio)

Original Publication: Originally written for Post-Polio Support Society NZ (Inc). Revised 1966.

Abstract/Extract: Discusses What is PPS?, How common is PPS?, Who is at

risk for PPS?, Recovery from Polio, What causes PPS? and What can be done?.

Title: Post Polio Sequelae: An Explanation for Health Professionals LEAFLET Author(s): J. M. Walker, PhD, PT, K. Sweet, BSC(Physio)

Original Publication: Originally written for Nova Scotia Polio Survivors Support Group. Revised 1966.

Abstract/Extract: Discusses What is post polio syndrome?, Who is more at

risk for PPS?, Why may some polio survivors develop PPS? and What can be done?.

Title: Fibromyalgia Is Common in a Postpoliomyelitis Clinic (In this Newsletter) Author(s): Daria A. Trojan, MD, MSc, Neil R. Cashman, MD

Title: Management of post-polio syndrome

Author(s): Daria A. Trojan, Lois Finch

Original Publication: NeuroRehabilitation 8 (1997) 93-105 Abstract/Extract: Many patients with post-poliomyelitis syndrome can benefit from a management program. When a post-polio patient presents with

new symptoms, it is first essential to identify and treat other medical and neurological conditions which could produce these symptoms. New weakness can be managed with exercise (stretching, strengthening, and aerobic), avoidance of muscular overuse, weight loss, orthoses, and assistive devices. Fatigue can be managed with energy conservation techniques, lifestyle changes, pacing, regular rest periods or naps during the day, amitriptyline to improve sleep, and possibly pyridostigmine (trial in progress). The management of pain is dependent upon its cause. The treatment of post-polio muscular pain can include activity reduction, pacing (rest periods during activity), moist heat, ice, and stretching, use of assistive devices, and life style modifications. Fibromylagia can be treated with amitriptyline, cyclobenzaprine, and aerobic exercise. Joint and soft tissue abnormalities can be managed with modification of extremity use, physiotherapy, orthoses, assistive devices, non-steroidal anti-inflammatory medications, and rarely steroid injections and

surgery. Superimposed neurological disorders may produce pain, and should be identified and treated. The identification and treatment of pulmonary dysfunction in a post-polio patient is an important aspect of management, and is discussed elsewhere in this issue. Dysphagia can be managed with diet changes, use of special breathing and swallowing techniques, monitoring fatigue and taking larger meals earlier and smaller meals later, and avoiding eating when fatigued. The management of psychosocial difficulties usually requires an interdisciplinary approach, and may include a post-polio support group, social worker, psychologist, and psychiatrist. © 1997 Elsevier Science Ireland Ltd.

Title: Anticholinesterase-responsive neuromuscular junction transmission defects in postpoliomyelitis fatigue

Author(s): Daria A. Trojan, Daniel Gendron and Neil R. Cashman Original Publication: Journal of the Neurological Sciences, 114 (1993) 170- 177

Abstract/Extract: Disabling generalized fatigue and muscle fatiguability are common features of post-poliomyelitis syndrome (PPS). In 17 fatigued PPS

patients, we measured jitter on stimulation single-fiber electromyography (S-SFEMG) for at least 3.5 min before and after i.v. injection of 10 mg edrophonium. We observed reduction in jitter (defined as a significant difference in jitter means before and after edrophonium, unpaired t-test P < 0.05) in 7 patients, no change in 8, and a significant increase in 2 patients. Blinded to their edrophonium results, the 17 patients were treated with pyridostigmine 180 mg/day for 1 month, with a subjective improvement of fatigue in 9 patients, and with a significant reduction in mean Hare fatigue scores in the entire group of 17 patients (pre=2.71, and post=1.71; Wilcoxan signed rank sum test, P < 0.05). Edrophonium-induced reduction of jitter on S-SFEMG was significantly associated with pyridostigmine-induced subjective improvement of fatigue (Fisher’s exact test, P < 0.04). A significant reduction in fatigue with pyridostigmine was observed only in the 7 patients who experienced a significant reduction in jitter with edrophonium (Wilcoxan signed rank sum test, P=0.03). In addition, the 9 pyridostigmine responders experienced a significant reduction in jitter means pre- and postedrophonium (100% vs. 88%, Bonferroni corrected, P < 0.01). We conclude that neuromuscular transmission as measured by jitter on S-SFEMG can improve with edrophonium in a proportion of PPS patients, and that generalized fatigue and muscle fatiguability in some patients with PPS may be due to anticholinesterase-responsive NMJ transmission defects.

Title: Pathophysiology and diagnosis of post-polio syndrome Author(s): Daria A. Trojan, Neil R. Cashman

Original Publication: NeuroRehabilitation 8 (1997) 83-92 Abstract/Extract: Post-poliomyelitis syndrome is defined as a clinical syndrome of new weakness, fatigue and pain which can occur several decades

following recovery from paralytic poliomyelitis. The cause of this disorder is still unclear, and many possible etiologies have been proposed. The most widely accepted etiology was first proposed by Wiechers and Hubbell, which attributes PPS to a distal degeneration of massively enlarged post-polio motor units. Other probable contributing factors to the onset of this disease are the ageing process, and overuse. Currently, there is no specific diagnostic test for PPS, which continues to be a diagnosis of exclusion in an individual with symptoms and signs of the disorder. © 1997 Elsevier Science Ireland Ltd.

Title: Polio Biology I – An Introduction to the Virus Author(s): Eddie Bollenbach

It may surprise you to know that we don’t understand where viruses originally came from. Yet for every life form on the planet there is some virus

somewhere that can penetrate and infect its cells. All viruses infect by following a similar process: they attach to a cell, penetrate it, reproduce, and propagate. The propagation step often involves bursting and killing the infected cell and the release of hundreds of new viruses. Polio does this to the cells it infects.

EMAIL UPDATE NOTIFICATION SERVICE: If you wish to receive email notification of changes to our Website please email LPPNUpdate@loncps.demon.co.uk with the word SUBSCRIBE in the body of the email. You will receive update notices as bcc’s or blind carbon copies. This means that your email address will not appear in the headers of email to other subscribers thus ensuring your privacy. Your email address will only be used for the Update Notification Service and will remain confidential and not be divulged to any parties outside LincsPPN Administration.

CONFERENCE IN GERMANY Bundesverband POLIOMYELITIS e.V.present anInternationalen Polio-Kongressin Freidrich-Schiller-Universität Jena, Germany from 30 October – 1 November 1998Post Polio Syndrome – Diagnostic and Therapeutic Opportunities and Potential in the domain of Medication/Physiotherapy/Neurology/Orthopaedics and of the Psycho-Social Situation- Patients Forum – http://selbsthilfe.seiten.de/bv/polio/kongr98.htmCurrently Unavailable

American Association for Respiratory Care11030 Ables Lane, Dallas, Texas, 75229-45937th International ConferenceNoninvasive Ventilation : Across the Spectrum from Critical Care to Home Care. March 14 to 17 1999 in Orlando, Florida, USAMore than 1,000 people are expected to gather March 14 – 17 1999 in Orlando to participate in a

program for anyone involved with noninvasive ventilation- from physicians, respiratory therapists, and nurses to ventilator users and their families. For more information please contact the American College of Chest Physicians at (800) 343 2227

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177

Articles for publication by November 20th – Publication date December 5th 1998 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

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/lincpinvol02issue01.html> Last modification: 5th February 2010.

Linc Pin Volume 2 Issue 1 Read More »

Linc Pin Volume 1 Issue 12

The Lincolnshire Post-Polio Information Newsletter Volume 1 – Issue No. 12 – August 1998

CONTENTS

Medical Information

ROLLING ALONG Grace R. Young, MA, OTR Elizabeth Lounsbury, Chair of the PPS Committee Ontario March of Dimes, writes……. about OMOD and their recent PPS Conference in Toronto, PPS – Solutions for the Future Permission Giving: Emotional Adjustments and the Late Effects of Polio Karen Kennedy, MSW CSW, West Park Hospital, Toronto

AGING WITH POST-POLIO Dr. Mavis Matheson Script you can use to make a 6 Minute Relaxation Tape. Dr. Mavis Matheson

Internationalen Polio-Kongress in Freidrich-Schiller-Universität Jena, Germany from 30 October – 1 November 1998

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

New Book now available – Managing Post-Polio A Guide to Living Well with Post-Polio Syndrome edited by Dr. Lauro Halstead.

LincsPPN Information, stories and bits just for fun

Editorial by Hilary Hallam HILS AND LYNN’S TRIP TO THE STATES AND CANADA. Sweet Dreams by Christine Ayre, Lincolnshire

SUNDAY MORNING The Reverend Phillip W. Thetford, D.Min Pastor Ashland Presbyterian Church in Virginia, USA.

Dear Patients: Sent in by Rev. Karen Utz, Dayton PA, USA Sylvia Dymond from Hampshire, UK Diane now living in France

Dealing With My Fear, Anger, And Negative Thinking Carol Swedberg Meyer

Martyn Bailey LincsPPN member from Derbyshire visits Eugenia Provence in Seattle.

LINCOLNSHIRE POST POLIO NETWORK – ANNUAL GENERAL MEETING.

Our Contact Information

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

Lincolnshire Post-Polio Network

Editorial by Hilary Hallam

The AGM is on Saturday 19th September 1998 at Ancaster Day Centre, Boundary Street, Lincoln. The format will be a formal meeting starting at 11.30 am prompt. Followed by a buffet lunch (£2 – booking essential) with plenty of time for meeting others. This will be followed at 2pm by a talk byDr. Alan Whiteley, Consultant Neurologist at Queens Medical Centre plus others with a refreshment break and plenty of time for Questions. We will have a lot of information available on Post Polio Syndrome. This will include a paper copy of the Lincolnshire Post-Polio Library, plus many other medical articles and books. We will also have videos available for watching in another room.

Going south on the A 1434 – Newark Road – Boundary Street is the last street on the right before the Pedestrian Traffic Lights opposite DC Cook. The Day Centre Entrance is on the left about 30 houses down. It is important that you return the enclosed slip whether or not you are able to join us so that we can ensure that we make a success ofour first AGM since receiving Charity status. Thank you for your help in this matter. An Evening Meal is being organised with plenty of choice of menu for those who would like to join us. For those travelling some distance and staying overnight and for anyone else who would like to join us, arrangements will also be made for Sunday for those who would like to have a look round Lincoln’s famous Cathedral, Castle and the surrounding area Please contact us for more information.

The Lincolnshire Post Polio Network has come a long way – especially since becoming a Charity at the end of August 1997 – and we have many plans for the future. To achieve this we need more help from individuals in taking on specific areas of the work, and more financial backing, sponsorship and grants. You do not have to live in Lincoln, or have a computer, to help us. Ruth Bridgens in Avon – diagnosed as non paralytic polio – has offered to become our linchpin for all others so diagnosed. She would like to collate your stories about your polio and problems getting diagnosed now and is collecting and reading many medical articles noting references to this. She will be reporting on her findings in the newsletters. We have already put four others in touch with her. Sylvia Dymond in Hampshire has offered to become the linchpin for those who would like a Polio Pen Pal. Christine Ayre in Lincolnshire, a committee member, has offered to be the linchpin for those using respiratory equipment. Please address all letters to these people c/o of our main address on the back page.

An offer came in today from a member in Yorkshire who has collected many leaflets on disability, disability equipment and services to make a list of what is available and the relevant contact information. MaryAnn in Lincolnshire is reading some polio booklets that have arrived and making notes on important points. There are many tasks to do, if you would like to help then please get in touch.

We reported in the last newsletter that Lynn and I were going to visit the States and Canada. This was an extremely successfull trip taken at our own expense with some financial help from family and friends. We have returned with over 25 medical articles to add to the Lincolnshire Post-Polio Library, and promises of more to come. Many that we met agreed that more international attendance at conferences where information can be shared and contacts made will enable more discussion to take place on all the intricacies of the problems that polio survivors are finding in later life. If anyone has any contacts that you feel would be willing to provide financial support to enable us to have representatives at more conferences then please get in touch with us.

May I say that over the last two months I have learned how important pacing and resting and using appropriate aids and assistive devices are to enable you to get more out of life. If you allow yourself 10 energy tokens a day – you can cut them in half and quarters – and write out what you would like to do over the next week or two, you can formulate a plan of how you might achieve this. If you borrow tokens from one day or days, then you must store up extra before and/or pay them back later. It is now over a fortnight since returning from America and despite pacing and resting as much as possible during the trip I am still not back to the level of energy that I had before the trip. My cane, electric scooter, driving an automatic car instead of a manual, downstairs bathroom, nighttime – 5mg of amitryptaline, Breathe Right Nasal Strip, neck pillow, window open – and now new and well fitting Canadian made brace for my right leg have made a considerable difference to how I manage my life now. Energy used, must be interspersed with rest, for maximum results.

What follows [after Rolling Along] is a much shortened piece about our recent trip to the States and Canada. It will take us a little longer to write this up completely, including photographs of the many Polio Survivors and Post Polio Specialists that we met en route. This will be available in a couple of weeks and at our AGM on September 19th 1998.

ROLLING ALONG

Grace R. Young, MA, OTR

Many of us who had polio were pushed to exercise vigorously and discard canes, braces, and wheelchairs as quickly as possible. The primary goal was to become “normal” and this meant casting off equipment and doing everything other people did. To us and our families, continuing to use equipment meant that we had not been “cured”. Therefore, it is not surprising that we feel a sense of failure if we have to start using wheelchairs or scooters or return to the equipment we left behind many years ago.

Two social workers workers are also polio survivors have written about the positive benefits from seeing oneself as disabled (see reference). These include:

1. allowing yourself to be pleased with whatever you have accomplished.

2. allowing yourself to join support groups which provide an emotional environment for the

expression of the painful feelings which accompany physical loss.

3. letting yourself discard the false pride which has prevented you from using equipment which

would help you meet the demands of life.

Canes or crutches may suit your needs when you’re at home or need to ambulate very short distances. However, using a wheelchair or electric scooter for longer distances or in challenging situations may actually prolong your ability to walk by preventing overuse of your legs. And there are other advantages to using wheelchairs or electric scooters instead of canes and crutches. Long-term use of crutches or canes can cause secondary complications such as compression of nerves in the neck area (thoracic outlet syndrome) or wrist (carpal tunnel syndrome), which can cause pain and numbness in the arm and hand and eventually affect function in the upper extremity. Continuous use of crutches or canes can cause gradual weakening of shoulder and arm muscles,

even if these areas did not appear to be affected during the initial attack of polio. Remember that some muscles may have suffered subclinical damage – that is, some motor units were lost during the acute attack but not enough to be obvious during normal usage. The use of canes or crutches over a long period of time can overwork the remaining motor units.

And last – but not least – ambulating uses a tremendous amount of energy when you have considerable weakness in your leg muscles.

MANUAL WHEELCHAIR VS. ELECTRIC WHEELCHAIR VS. MOTORIZED CART (electric scooter)

The main advantage to a manual wheelchair is its portability. It folds easily and comes as light as 27 lbs., which is too heavy for most polio survivors but could be lifted easily by a non-disabled companion. It fits into most automobile trunks.

The main disadvantage is that long-term pushing may lead to the same problems as using canes and crutches – pain and increasing weakness of the shoulder muscles. Nothing is gained if you conserve your legs but overwork your arms.

There are many factors to consider when deciding between a scooter and an electric wheelchair. Either one is an expensive purchase, so you need to anticipate what your physical condition will be like in the future.

Using an electric cart requires enough leg and trunk strength to transfer on and off the seat. It entails adequate trunk balance and upper extremity strength and endurance as you need to reach forward and maintain a grip on the tiller, which can be fatiguing to the hands and shoulders. If you are experiencing increasing weakness in your shoulders, hands, or upper body muscles, consider whether an electric wtreelchair will fit your future needs better than an electric scooter. Electric mobility aids do present a transportation problem. There are many types of lifts available for vehicles, and you need to seek input from a physical or occupational therapist who is experienced with this type of equipment. The main thing to look for in a lift is: can you get the wheelchair or scooter in and out of the vehicle independently and without physical stress.

Reference: Carsey, C. and J. Tepley. 1986. Facing disability. Rehab. Gazette, 27:6-7.

Grace Young gryoung@pacbell.net WebSite http://www.reocities.com/HotSprings/4713/

See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

HILS AND LYNN’S TRIP TO THE STATES AND CANADA

Lynn Singleton (a member and Polio Survivor from East Sussex) and I met for the first time at the Virgin Atlantic Check In Desk at Heathrow Airport on the afternoon of the 30th June 1998. Up to then we had only talked on the phone and corresponded by email. We were primarily going to attend the Ontario March of Dimes Conference – PPS Solutions for the Future in Toronto. Flying by Virgin Atlantic Jumbo Jet landing at Newark Airport, New Jersey and then hired a car – a Chevrolet Monte Carlo with hand controls fitted free – from Alamo and drove to and from Newark staying with many of the Polio Survivors and PPS Specialists that we had met on the Internet en route.

Our arrival in the States was just before a massive thunderstorm and we waited inside the building for Chris and her mum Pat Morgan <THATS-PAT@WEBTV.NET> to pick us up. We stayed the night with them and next day Chris took us to the Airport so that Pat could fly home to Florida and we could pick up our hire car at Alamo. She led us out onto the Interstate 95 and we were on our way south. First we stopped at Mobility Plus in Highstown New Jersey to pick up the electric

scooter that I had to hire (my own would not fit in the boot of a car) and were soon on the road again to Baltimore in Maryland where we stayed with friends of Hilarys. Brooke Tuft <BETuft@AOL.COM> called after work the next morning to join us for breakfast. We then drove on via the south of Washington DC to pick up Sheila Tohn <OldNurse@aol.com> who was joining us for the next part of our trip. We arrived in Richmond Virgiania where we were royally looked after by Dr. Henry Holland and his wife Brenda <Henry4FDR@aol.com>. At a cookout the following day on 3rd July we met many of the Central Virginia Post-Polio Support Group including Linda VanAken <DVanAken@aol.com>. Linda Myers <myersl@POP.EROLS.COM> and Phillip Thetford <Phillipwt@aol.com> plus guitar also joined us and met this group far the first time.

The following day we were taken for a tour round Old Richmond – including seeing the hospital that Dr. Henry was in when he had Polio – and that evening to the 4th July celebrations. We were asked if we minded going and were a little perplexed but the comment ‘Well we did beat you’ brought much laughter. The music of the 1812, the bells of the carillon in the War Memorial Tower, the Canon fire and the massive firework display at Dogwood Dell were thoroughly enjoyed. The next day we set off for Manassas and the home of Linda Myers where we rested prior to driving to Washington DC for dinner with Dr. Halstead and his wife Jessica Scheer. Dr. Halstead told us all about how he started learning about PPS, and the conferences he has organised and attended over the years. A very enjoyable and informative time, plus we were able to pick up – hot from the press – some copies of Managing Post Polio Syndrome which he has just edited. (See back page for more information.)

We drove back to Manassas for the night and left early the next day for Dayton in Pennsylvania. The home of The Rev’s Karen and Gary Utz of the United Methodist Church. Karen <popette@client.alltel.net> explained that we had been pronouncing it wrong it is Pope ette and not pop ette. Nancy E <lynlee@CSONLINE.NET> drove 65 miles south from near Franklin to meet us… and we had a delightful time chatting and being driven round the local area to see the Amish Farms and people.

On Wednesday we left for Canada… driving towards Buffalo we were told under no circumstances go on the Interstate through it but to take the road round. However, hearing on the radio that the road round was blocked we turned off and found ourselves driving through Buffalo amidst all the road works and in a torrential rain storm. We could barely see where we were going at one stage the rain was so heavy. Slightly unsure of exactly which bit of the I190 we were on we asked at the toll to this bridge “Where does this road go?” The reply was “To Canada” so on we drove finding out that it was not the bridge we had intended to use but Canada we had reached. We drove on in much better weather to London, Ontario and stayed with Margaret Campbell <at.campbell@SYMPATICO.CA>, a special needs teacher, for two nights leaving at 3am to get to the Plaza international Hotel in time to go on Barb Dowds – from OMOD – Coach Trip to Niagara Falls. A wonderful sight. We returned to the Hotel, unpacked, washed and changed and went down to the Hospitality suite where we met with many Polio Survivors. Huge hugs for some that we had talked on the Intenet for many months.

The Conference lasted over two days and was filled with very interesting and informative talks and workshops by many eminent medical professionals specialising in PPS. Dr. Neil Cashman, Dr. Mavis Matheson and Joan Walker PhD – all of whom have articles on our website – were speakers. (Articles in this issue by Dr. Mavis Matheson and Karen Kennedy, MSW, CSW from West Park Hospital, PPS Clinic – more next newsletter). The Saturday Night Murder during the evening meal was great fun and much enjoyed, although by this time of the day our polio fogged brains were not much good at working out ‘Who did it’. On the Monday we visited the West Park Hospital, PostPolio Clinic in Toronto. Wendy Malisani <wmalisani@westpark.org> the co-ordinator showed us round and we had a long talk with Karen Kennedy. An excellent facility and we think a blueprint for all holistic PPS assessment clinics. Diane Gaye <DianeGaye@aol.com> joined us at the Clinic. She was visiting from France with her husband at another conference in Toronto. We then returned to the Hotel and rested. (Dr. Parker and Wendy Malisani from West Park Hospital and Dr. Daria Trojan

from Montreal Neuro Inst. will be speaking at the Internationalen Polio-Kongress in FreidrichSchiller-Universität Jena, Germany from 30 October – 1 November 1998).

Tuesday saw us driving along the Thousand Island Parkway to Montreal. We crossed the Province Line from Ontario into Quebec and found that all the signs were now only in French. We had to bring our schoolgirl French to the fore. I stayed with Sally Aitken <aitken@accent.net> and Lynn with Alice Westcott. We were driven round Montreal, spent an hour in a Board Room at the Montreal Neurological Institute with Dr. Daria Trojan. She then joined us and other members of Polio Quebec for Lunch. Sally then took us on another tour along a very scenic river route followed by dinner with Audrey. The next day, Thursday July 16th, we drove to Ottawa where much to my astonishment I found myself having an appointment with an orthotist, Martin Kraft – The House of Kraft – organised by Marcia Falconer and three hours later walked away with a brace that fitted me, was very comfortable, and the difference in my walking was so noticeable. Swelling and pain in both legs is now considerably reduced. Much concern was raised at the Conference and by the three orthotists we met about the total inappropriateness of the two braces I had been issued with in this country. Thank you Martin and Marcia for making such a difference to my life.

We had a tour round Ottawa, followed by a wonderful meal and much chat and laughter. The next day we had breakfast with Peter Ellis <pcellis@sprint.net>, Barry McMahonn <mcmahonn@home.com>, Don and Helene Waddell, Linda and Marcia Falconer <ddf@sce.carlton.net> then returned home and rested and chatted and that evening went out for our first Chinese Buffet. So much to choose from and for a set price. We left next morning and drove out of Canada at Cornwall and through the States of New York, into Vermont and across Lake Champlain by Ferry. We went on through New Hampshire to Massachusetts, such wonderful scenery. We arrived at six o’clock in Brockton south of Boston where we stayed with Judy and her family <LadyAmulet@aol.com>. Carol Swedberg-Meyer <CKSwedberg@aol.com> and her husband visited on Sunday and we chatted for hours.

Monday we drove on through Rhode Island and Connecticut to the Bronx and met with Florence Lunde and her husband <LUNDEFM@aol.com> for a couple of hours and then drove very slowly in heavy traffic towards and across the George Washington Bridge into New Jersey. We made for the Airport and a hotel where we put our feet up, had a good nights sleep and sorted out our things for the journey home. We talked on the phone with Chava Willig Levy <primerib@ibm.net> as we were out of energy by this time and at the end of 2,700 miles we felt that to attempt the Manhatten traffic on our last day was not a good idea. My hired scooter was collected from the Ramada Hotel by Mobility Plus, for which I am most grateful in view of the fact that the owners Bob Wynn and his wife lost their home a few hours earlier by fire. We returned the car to Alamo… and were taken across to the Departure Lounge where we waited for our overnight flight by Virgin Atlantic to Heathrow Airport.

We returned with over 25 new medical articles for our WebSite – and promises of more to come, with many wonderful memories of meeting many very special people. Learning so much more about PPS by talking with Polio Survivors and PPS specialists. It was a privilege to meet you all, and we thank all of you for your graciws generosity and hospitality.

Hilary <linpolio@legend.co.uk> and Lynn <lynn.singleton@virgin.net>

Elizabeth Lounsbury, Chair of the PPS Committee Ontario March of Dimes, writes…….

I am honoured to have been asked to write an article for the Lincolnshire Newsletter. I am the Chair of the Ontario March of Dimes Post-Polio Committee. Our organization has it roots in polio. In 1951 it was founded to help polio victims and their families. With the advent of the vaccine and

polio under control we changed our mandate to help find independence for Adults with physical disabilities. In 1985 we established out Post-Polio Program and have been working to educate survivors and professionals. March of Dimes currently has a polio registry of 4800 people that have had polio in Ontario and 1350 interested Health professionals. This registry continues to grow weekly. On an average we mail out seven packages of information weekly to new registrants and Doctors to all corners of the world.

One of the most important things that we do for people contending with Post-Polio problems is hold bi-yearly Post-Polio Conferences. The latest, “Solutions for the Future,” was held last month in Toronto. There I met so many wonderful people from all over the world. I became reacquainted with Hilary Hallam, and met Lynn Singleton from Sussex. Both these ladies and I had previously known as Cyberfriends on the Internet. The most important thing we all did at the conference was meet new people, wonderful people all fighting the same battle. No one that attended need ever feel alone again. Many people that had been in complete denial felt so comfortable being with so many others in the same boat that they were finally able to realize that they are in trouble and have to start looking after themselves. Registrants had the opportunity to try out assistive devices such as scooters and realized ‘hey this isn’t so bad.’

The conference featured such doctors as Dr. Mavis Matheson who spoke on Aging with Post-Polio, and Dr. Cashman. Dr. Cashman spoke on the research into the fatigue medication Mestinon. He stressed that the research was not complete and in fact had not been done properly. The most interesting fact was that at the end of the trials many people decided to stay on Mestinon. People don’t take medicine unless it does help. Obviously there are more studies needing to be done. Dr. Vanderlinden, a prominent neurosurgeon, spoke about the options for pain relief in PPS. He discussed medications, nerve stimulation and surgical procedures.

The proceeding will soon be available for ordering from our Head Office. To order your copy email Kim Sialtsis at ksialtsis@dimes.on.ca. This e-mail address will not be working until the end of August. In the meantime anyone is welcome to e-mail me at loonie@ican.net. The cost of the proceedings is Cnd $28.00. I look forward to hearing from all of you that attended the conference and all of you that didn’t.

Permission Giving: Emotional Adjustments and the Late Effects of Polio

Karen Kennedy, MSW CSW, West Park Hospital, Toronto

All of us have encountered situations in life where we have had to seek permission from another person or group in order to complete the task at hand. If that permission is not forthcoming, our efforts may be thwarted and the task halted. In consulting my Collins Gem dictionary, I discover that the word permission means authorization, which in turn means to empower, permit or sanction. The word giving means elasticity and yielding. The word give means to bestow or confer ownership. The task at hand is the ongoing adjustment to life with new fatigue, pain, weakness and general changes in physical and emotional tolerance caused by the late effects of polio.

The ideas of permission giving and adjustments are inseparable. I would like to suggest that the idea of personal emotional permission giving is central to the discussion of adjustment to living with the late effects of polio. The emotional permission giver controls the answer. There will be times when the permission giver may not see the need or may refuse to see the need to give permission – permission to acknowledge reality and initiate purposeful change in order to manage the late effects, instead of being managed by them.

Many of you who live with the late effects of polio, have achieved greatly, worked very hard and sometimes pushed past your pain and physical challenges to accomplish your goals in life. Some of

you have focused your energies on caring for the needs of others, possibly to the exclusion of your own need to set limits. While the discipline, dedication and determination involved, all represent strength in character, the tendency for some has been to tune out their bodies in order to meet these personal goals.

I come to this discussion of permission giving as some one who has not experienced the polio epidemics. I do not live with the daily challenges associated with new weakness, fatigue and pain. I have not been faced with the lifestyle changes, family adjustments and emotional adaptations that are often required. However, I do come to this discussion, as a health care provider who has had the privilege of listening to over 800 individuals who do live with these issues. I continue to learn from these relationships while working to provide support, education and resource contacts to those who come through the Post-Polio Clinic at West Park Hospital.

The Polio Experience

Rehabilitation medicine became an emerging speciality in the 1940’s and 1950’s. The polio epidemics of the 30’s and 40’s challenged the field to expand in order to meet the urgent needs of the polio population at that time. As a result, polio rehabilitation focused on physical recovery with great value being placed on physical exercise and therapy.

Unlike most other neurological diseases, it was possible to replace weakness with strength and build strong limbs. Along with the sense of mastery and control that exercise afforded, was the notion that if one worked hard enough, they could accomplish almost anything. The tendency was to push ones body when there was pain, when the muscles said ‘No” and when other individuals may have rested.

[L.S. Halstead 1]

The field of polio rehabilitation did not adequately address the childhood emotional impact of long term hospitalization, separation from family and sometimes invasive treatment experiences. The limited knowledge of polio’s late effects and the personal/societal expectations for recovery did not always encourage the expression of feelings. Also, most of you were very young children when you contracted polio and, understandably, your families worked to help you adapt and move on with life.

In the ensuing years, North American society in general wrote polio off as being virtually non existent until the 80’s when research began into the late effects of polio. As a result, many people have been misdiagnosed over the years. Some of you have felt misunderstood and somewhat isolated in relation to your polio experience and have not been accustomed to, nor encouraged to express your polio related needs.

It stands to reason that one’s approach to life in general would be affected in some way by certain aspects of the “polio journey”. No two life experiences will be the same. Some of you have adjusted all along to visible effects from your childhood polio, while others are just now being faced with new uncharacteristic weakness, fatigue or pain. No matter the experience, the desire to “fight the opponent”, is a strong motivator and poses genuine conflict when the body begins to protest the fight. Fighting against the symptoms only tends to intensify them. Previous ways of coping may no longer be the method of choice. This implies the need for change. If the internal permission is lacking or non-existent, adjustment will be more difficult for you and those close to you.

Permission To Do What?

Many of the following suggestions are a compilation of the insights shared at the Family and Post Polio Syndrome Workshop sponsored by the Post Polio Clinic at West Park Hospital in June 1994.

1. Make Changes: Give yourself permission to make changes. Acknowledge your new

limitations and adjust your expectations of self. Consider how altering your lifestyle can

help you maintain your independence. Conserve your energy by pacing, prioritizing and

changing how things are done. Work on receiving new information into your thinking. This

may be difficult, as many of you have developed coping approaches which have worked

until recently. Experiment with strategies that work for you and take control. Accept that change is a process that takes time and effort. In your time, allow yourself to feel the loss associated with these changes and explore new interests and roles.

2. Set Limits: Dr. Margaret Backman, a psychologist in New York, has considerable experience in working with individuals who live with polio. In her article Managing Your Needs in Relationships, [2] Dr. Backman discusses the importance of being an active participant in managing your own needs. She suggests that learning to set limits is key. Learn how and when to ask for help and how and when not to give help. This involves becoming more aware of automatic patterns and finding constructive ways to change them. It is most important to integrate this approach into your lifestyle before your symptoms demand it.

Communication about the reason for limit setting is essential. Families and others can misinterpret this move as being laziness or depression related. The people around you need to be informed so that effective limit setting can take place.

3. Ask for Help: Remind people if they need prompting. Don’t expect others to always remember or anticipate your needs. [1] Learning to ask for help is seen by some as demeaning and is one of the most difficult tasks in adjustment. Most of you have coped independently for years and are not used to seeking assistance. This often means that roles in families and relationships change and requires a solid commitment to communication and problem solving. Be sensitive to the needs of others in this process. Allow others the joy of helping and learn to graciously receive that help. Work on acknowledging the efforts made by others without feeling guilty or inadequate. During this process, try to fears on what you can do and take pride in your present abilities.

4. Express And Be Heard: Openly express your needs, preferences and feelings. This may seem unrealistic for people who are not accustomed to communicating this way. It may start with you seeking our more education or information or asking questions.

Outcome Of Withholding Permission.

In listening to people, I hear that pride, fear of the future, insecurity in relationships, refusal to accept reality and refusal to give up are some of the blocks that stop people from allowing themselves permission to make needed changes.

Are you noticing any of the following experiences in your own life? Are any of these possibly related to resisting the need to give yourself permission to adjust? (Some experiences listed will be related to other causes.)

• Increased frustration, anger and irritability

• Increased pain and fatigue

• Stressed relationships

• Frustrated family members who are standing by willing to assist

• Increased difficulty accepting suggestions or new ideas for coping

• Energy wasted on fighting the symptoms instead of channelling energy to adapt and take

back control

• Fighting against the symptoms tends to increase their impact instead of lessening them

• A survival mentality where there is no reserve energy left at the end of the day for leisure or

life

• Decreased social involvement due to fatigue levels and a private approach to the polio

issues.

Support for Change.

Reality is, that if you do not have the supports you need to assist you in this change process, you may need to consider how it can be developed. I often ask people to look at their situation and

identify the existing sources of support that need nurturing, along with new potential avenues for support. Support for change is often nearby if we would recognize it and call upon it. I have singled out four avenues for support, recognizing that you will have your own individual experience of each.

1. Family and Friends: Family members and close friends can often provide constructive support and encouragement. The capacity of family members to provide support will vary depending upon how you communicate with each other, the type of relationship you have shared over the years, the level of understanding and acceptance of your polio concerns, and where they live in relation to you. These people can assist to the extent that you are open to explain and speak out your needs.

People often comment on how hard it is for them to accept offers of help from those dear to them. If you have been the caregiver/helper/doer in the family, the idea of delegating more to children or your mate may feel awkward and unnatural both to you and to them. Role adjustments usually happen gradually and it is important not to lose sight of your individual strengths and personhood during this ongoing adjustment.

I would recommend a helpful article entitled Psychological Issues and Family Relations in Post Polio Survivors by Dr.s Susan and David O’Grady [3]. The article summarizes a series of family workshops, focusing on how polio survivors can better communicate to their partners and family, what the polio experience is like for them and how partners and family can communicate to the polio survivor what their own experience is like.

2. Support Groups and Newsletters: I have observed the role that Ontario March of Dimes, post-polio support groups, conferences and newsletters can play in helping people receive the permission they need to look at their own needs and make necessary changes. The sense of group identity and camaraderie are helpful in adjusting and continuing constructive change. The West Park Clinic strongly believes in the importance of these types of supports and each person through the clinic who is not already registered with the Ontario March of Dimes, is provided with a registration form and information about the support group nearest them.

(Editors Note. we are in touch with or aware of many support groups or polio survivors around the World. Please contact us for more information.)

Support groups and newsletters are very helpful in offering informational support as well as emotional support. Being informed is essential in order to have a sense of control in our lives. Many individuals come from experiences where polio information and education has been either nonexistent or inaccurate. So appropriate, credible polio education is a necessary component in giving and receiving support. Community education and information sharing are also effective ways that these groups can assist in developing broader avenues of support for change.

3. Medical Services: The health care system is gradually becoming more informed about polio

and the late effects, but there is still a large need for increased education. I have met many

individuals who are assisting their family practitioners or health care providers by providing

them with current articles and research. If you would like a polio information package

forwarded to your physician, contact the Ontario March of Dimes Post-Polio Coordinator at

416-425-3463 ext 213 or omod@inforamp.net. (UK – check our WebSite directory or

contact the LincsPPN on 01522 888601 or email info@lincolnshirepostpolio.org.uk)

The West Park Hospital Post Polio Clinic is available to Ontario residents (and others now –

contact the Clinic for information) and provides a multi-disciplinary team assessment with a

physiatrist (physician specialising in rehabilitation medicine), physiotherapist, occupational

therapist and social worker. Letters are then sent to the individual and their referring

physician, outlining individualised treatment approaches, personal exercise programs,

appropriate adaptive equipment suggestions, and referral or linkage to community resources. If you would like further information, you can link in with the West Park Hospital, PostPolio Clinic web page at www.westpark.org/primary/postpolio.html

4. Community Resources: It is important to be aware of the services within your community that may provide the type of supports you might be lacking. Consider the areas of support that could simplify your life. What areas can you delegate to others thus freeing up energies for activities that are important to you? Most communities throughout Ontario have a Community Information Centre. These Centres will link you to local, community based agencies that may provide the type of service you are looking for. If you are unable to locate your local centre, call the Province of Ontario information line at 416-326-1234 and ask for the Community Information Centre in your area. If you live in the 613 area code you would call the Ottawa office at 613-238-3630.

The aim of permission giving is to take control over the symptoms caused by the late effects of polio in order to make the needed adjustments. You know yourself and your needs the best.

Lets Take Stock

In conclusion I have listed a few questions that you might want to consider at this point.

1. Has your earlier life experience with polio affected how you approach your present

situation? If so, how?

2. In what areas of permission giving are you strong? What areas need attention?

3. Are there signals in your own life or the life of your family that indicate the need for further

adjustment?

4. Are there areas where you need further support? Do you know where to find that support,

help or information?

I have met many people who have given themselves permission to step into the control seat of their changing health by creatively adjusting their thinking and lifestyle. I know that many of you have been experimenting with these or similar ideas for years. I respect your ‘journey’ and want to encourage you on your way. As you nurture humour and laughter in your life, you will find the increase perspective and refreshment needed for adjustment

Karen Kennedy, MSW, CSW. Post Polio Clinic. West Park Hospital, Toronto, Canada.

References.

1. Halstead, L.S. The Lessons & Legacies of Polio in Post Polio Syndrome. Edited by L.S.

Halstead and G. Grimby. Hanley & Belfus Inc. Philadelphia. 1995

2. Packman, M.E. Managing your Needs in Relationships. Conference handout from the Sixth

Intemational Post-Polio and Independent Living Conference St. Louis, Missouri, USA, June

1994.

3. O’Grady, S & D. Psychological Issues end Family Relations in Post-Polio Survivors. Mt.

Diablo Post Polio Network. MDPPN Newsletter Vol 6 No. 1. Reprinted in the Southern

Alberta Post Polio Support Society, Post Polio Echoes. Vol 10, No. 1 May 1997.

Christine Ayre – LincsPPN Committee Member catley@tesco.net

I would like to hear from others who use or may need to use respiratory equipment. My respirator has allowed me to do so much more. I hope you like the following story, and would love to hear yours.

Sweet Dreams

What blissful sleep I have now I have a ventilator, but not so other people. I was greeted at breakfast by my husband this morning with, “How the hell you sleep with all that noise from that machine I will never know”. In fact the noise coming from my room in the night must have woken the population of the surrounding Villages, I was told. I must admit I was aware of some noise, but I was dreaming it was someone else making the noise, and I was advising them how to stop making such an awful racket. Such nice sleep on a vent, but when the mask is not tight to the face, one tends to get whistling, and hissing noises, couple that with the snores coming from under the duvet. I had better explain. Well, ‘Ben’ my Boxer Dog gets so cold in the night he has to get in bed with his Mummy. Not much room in a single bed for him and me but we do manage. He does snore and woof in his dreams, but I do that also, we make a good pair.

I was also told what I looked like while all this noise was going on, lying in my bed with my mask on, and whistling, snorting, blowing, and woofing, with a death grip on the duvet [continental quilt] (how do I do that when I’m asleep?) or else’Ben” pulls it off. There were four dogs legs sticking out of the side of the bed. With me and a big dog in a single bed something has to hang out. We take it in turns to hang out. How did we both stay in bed fast asleep until nine forty-five was another question?

I must admit Ben as a bed partner has good, and bad sides. On the plus side, is the warmth and softness of him, better than an electric blanket, and also the fact that he is always alert, and listening for the odd noise, or burglar. I know he is alert as when he hears a strange noise he leaves the bed at ninety miles an hour, taking the duvet with him. A definite minus is that he always gets into bed with an assortment of toys, slippers, empty crisp packets, just about anything he can lay his paws on. I think it is a sort of offering for me, payment for getting in my bed. Another minus is when he rolls on his back under the duvet and sticks his legs in the air – all the cold floods into the bed and it’s just like being in a tent.

So if you are within a five mile radius of my house any night, don’t be disturbed by the woofing, snorting, whistling, and snoring. It’s only me and Ben enjoying a peaceful nights sleep.

AGING WITH POST-POLIO

Dr. Mavis Matheson

[Cartoons shown]

Aging interventions

Anthropologist Ashley Montague once said “The idea is to die young as late as possible.” [What you really need is a back-up body] Unfortunately, we don’t have back-up bodies. In order to feel young, we must adapt to the changes in our lives. Today, I’d Like to talk to you about making life changes in general and to suggest some options for change in the five areas that are the most effective with the least risk. These areas are, relaxation, nutrition, values and goals, communication and appropriate exercise.

Making life changes

How often have you said to yourself – “I really should eat better, I need to learn to relax, or I would love to be able to communicate better” and how often have you not made any changes. If you are like most people, you lost count a long time ago. You may even have lost confidence in your ability to make changes. You can make lasting changes. To do so, you need to consider your options, set goals to get started and evaluate your progress.

Before you plan specific changes, figure out why you might want to change an old behavior or add a new behavior. If you want to build relationships, maybe looking better is not as important as

improving your communication skills. What is the best way to get what you really want? Don’t base major life changes on the latest self-improvement trend, magazine article, or TV ad. You wouldn’t buy a used car from the first salesman you met. Why would you take health care advice from somebody trying to sell you something? Don’t rely on individual testimonials. (If you only hear from the guy who wins the lottery, you may believe that a $1 investment will always get you a million!)

Do your research. Keeping an open mind is a virtue – but as the space engineer James Oberg once said – “not so open that your brains fall out” [The sign says “Ye Olde wishing well”] Does a suggestion seem to be reasonable? If it seems too good to be true, chances are it is. Have studies been done? What actually works? Has it been tried with people like you? (If your nerves are burning out, a vigorous exercise program is not for you, no matter how much good it did those university age students.) Let someone else take the risk and find out what doesn’t work. Check your “downside risk” before making a change. What are the costs in terms of side effects, money, time and energy? What is the least stressful way to make the improvement you have chosen? The greater the risk to you, the more evidence you need that an intervention is likely to work.

Set goals for change based on what you want out of your life. Your goals should be specific, measurable, realistic, and truthful. Make very specific changes one at a time. What? How? Where? and When? do you want to make this change. Set a definite time and place to get started. To see if you goals are measurable, ask yourself “How will I know if I have succeeded?”

Be realistic, bring modifications into your life gradually. Your body is a wonderful, complex, living system with many checks and balances. Radical changes beget unexpected adaptations. (If you decrease your caloric intake too rapidly, your body will decide you are starving. Your metabolism will slow down. You will burn fewer calories. Not only will this diet not work, but future diets will be less effective!) Keep changes small. Turn one large change into a bunch of small changes.

Be Truthful with yourself about your commitment to this change. Rats live much longer (2 or 3 times normal) on a very low calorie diet (the equivalent of 1000 – 1300 calories a day in humans). On a very low calorie diet, I may or may not live any longer but without the pleasure of food, it will sure seem like it. Ask yourself “Do I want to live with this for the rest of my life?” All change is stressful. Don’t waste valuable adaptation energy on something you don’t intend to live with for a long time.

Once you have made a change evaluate it regularly. Feel good about what you are doing right. Things won’t always go smoothly. [Monday 8:30 AM: My first attempt to switch Evan to decaf has been a failure.] Value your accomplishments and appreciate your willingness to try to make changes. If a week goes by and all you have noted are the missed opportunities for change, congratulate yourself on your deepening awareness. Listen to your mind and body. Has the change moved you closer to your goal? No matter how carefully we prepare we will all make mistakes. If something isn’t working after 4 months, chances are it is not going to work for you. [Because I didn’t evaluate early, I stayed on a vegetarian diet for 2 years as I became weaker and weaker.]

Learn from the experience, rethink your options and try something else.

When you decide to make your life better, plan your change based on your options. Set a time to make one small, permanent change. Evaluate the change regularly and appreciate the things you are doing right. If it is not working after 4 months rethink your options. “Life is like sex. If it doesn’t feel good, you’re probably doing it wrong” You can improve your life. Make that change now.

I reviewed many books and articles on aging and Post-polio Syndrome using the criteria I have just discussed. I would love to say that I discovered the magic pill that halts (or better yet reverses) the effects of aging. Unfortunately it just doesn’t exist. I was surprised by how many of the medications tried in PPS have been or are being recommended as anti-aging drugs.

Some of the “anti-aging” pills tried and found no better than placebo in Post-Polio Syndrome are Prednisone, Human growth hormone, IGF-1 Insulin-like growth factor (the active agent in Human

Growth Hormone) and Pyridostigmine. Bromocriptine has been somewhat effective in treating fatigue but is only recommended after lifestyle interventions have failed. Large scale testing of Bromocriptine has not yet done in Post-Polio Syndrome.

What I did find was that the safest and most effective anti-aging interventions will also help with PPS symptoms. They are relaxation, good nutrition, working from your own basic values toward your own goals, improving communication skills and appropriate exercise.

As we go through this handout, mark things you are doing right with a star, options you would consider changing with a check mark. Later, rank the changes you would like to make and start working on the one that is easiest or most important to you.

1. Effective relaxation

I have considered marketing a pill to treat PPS. You would take it after lunch. Then you would have to lie down for 1 hour and relax completely. I am sure it would be a very effective treatment. It wouldn’t be better than placebo though.

Polio researcher, Dr. Paul Peach pointed out that “Weakness and fatigue are the body’s way of telling polio survivors to rest.” Drs. Bruno and Frick of the Kessler Institute found that polio survivors who comply with treatment-pace activities, conserve energy, take two 15 minute rest breaks a day, and use assistive devices (a brace, cane, crutches, wheelchair or scooter) have up to 22 percent less pain, weakness and fatigue 18 months after therapy ends.

To treat your fatigue, you need to take time to rest. Nap (if possible) during the day, work fewer hours, and take longer vacations. Rest is the best known treatment for joint and muscle pain. Relaxation is the classic treatment for stress. Using biofeedback techniques, you may learn to control the temperature of your extremities with focused meditation. Learning better breathing techniques may even help with respiratory insufficiency

The risks of relaxation are very small. There are no known side effects. It is free or at most the cost of a relaxation tape. It requires a relatively small amount of your time each day. If done correctly, it should give you more energy. This really does sound like the magic pill!

Specifically you need to learn a range of conscious relaxation techniques. There are many ways to achieve deep relaxation but the common ground is slow, full, relaxed breathing, conscious relaxing of the muscles and focusing of the mind on one specific thing so that thoughts and emotions become quieter and less distracting.

Ideally you should learn at least one 20 minute relaxation technique, one 5 minute relaxation technique and one 1 minute relaxation technique. Once you master these relaxation techniques you can learn to recognize difficult, high stress situations and use relaxation techniques to help you to perform better. Use relaxation over the long haul to lower your day-to day stress level and increase your awareness of your body and your emotions. Your physical and emotional pain is information essential to your health and well- being. Pain is a language, learn to understand it.

Another way to increase relaxation is to incorporate relaxing behaviors into your life. Behaviors like laughter can be very relaxing. It was a seventeenth-century British physician who said “The arrival of a good clown into a village does more for its health than 20 asses laden with drugs.” Norman Cousins discovered that ten minutes of the Marx Brothers could reduce tension for as long as 45 minutes.

Dr. William Fry, a Stanford University researcher, conducted studies during the seventies and eighties. He showed that both heart-beat and blood-pressure increase during “mirthful behavior”; (that is, chuckling as well as laughter). After this “excitement phase”, a “relaxation phase” sets in. In the case of blood pressure, for example, immediately following laughter both systolic and diastolic pressures return to “lower” levels than the original resting levels before the onset of laughter. He found there is a correlation between degree of relaxation and the intensity and duration of the

laughter (with or without actual delight or entertainment), which demonstrates that the action rather than the mood is responsible for the shift. Forced laughter has the same benefit as real laughter. I need not emphasize the importance of laughing loudly at cartoons whether you think they are funny or not. [I believe in the healing power of laughter, Doc, but if you try to tickle me again I’m going to belt you.]

Sleep is an excellent form of relaxation. If you find you fall asleep when you try to do relaxation exercises, it is probably your body telling you just how tired you really are. Music soothes the savage breast. “The Mozart Connection” by Campbell looks at the use of music for relaxation. [The good news is you have a song in your heart.] Massage (will be discussed in the healing touch workshop). It is one of the cornerstones of some Post-polio programs. Be careful not to wear yourself out getting to the massage session. Hot tub, hot bath, and whirl pool baths are another very good way to relax. I like the relaxation of a dinner out. I also find listening to tapes very relaxing. I prefer murder mysteries. Loving is an excellent way to relax. It can be anything from petting your cat to hugging to sex. As Richard Bruno suggests, “Turn off your thoughts, turn on your body and JUST DO IT!” Do whatever works for you. [I’m not pointing any fingers, but all our bubble wrap has been stolen again.] The important thing is not the behavior itself, but that you find it relaxing and give yourself permission to do it more often.

The reason I have put relaxation first and spent the most time on it is, “When you are up to your ass in alligators it is hard to focus on draining the swamp.” In stressful situations like the changes of PPS, blood flows away from the areas of the brain responsible for problem solving and information processing, impairing these faculties. Because of increased adrenaline flow, you will start to have trouble concentrating and difficulty staying still. This doesn’t leave you in very good shape to learn new skills or identify your values but you can still learn relaxation techniques.

2. Nutrition and Vitamin-mineral supplement

Last October, Dr. Susan Creange, a research fellow at the Post-Polio Institute at Englewood (New Jersey) presented a study of diet in polio survivors. Dr. Creange found that, “Polio survivors often have a ‘Type A diet’: drinking three cups of coffee for breakfast, not having lunch and eating cold pizza for dinner. When they put polio survivors on a hypoglycemia diet, that requires eating protein at breakfast and small, non-carbohydrate snacks throughout the day, they had a remarkable reduction in nearly all symptoms of post-polio fatigue.”

Your body’s energy comes from the food you eat, so you want to make sure your food intake is nutritious. Too much weight aggravates stress on joints and muscles and increases pain. [I see you’re developing a hazardous waist.] Difficulty swallowing may influence the way your food is prepared but makes it even more important that the food you eat is nutrition dense.

I experienced rapid progression of weakness on a vegetarian diet. When I began to eat red meat again, I experienced increased strength, increased muscle endurance and less pain. I also had less fatigue. Dr. L. Halstead described a similar experience when he presented his revised diet principles at the GINI 97 conference. He found that when he increased his protein intake, including more lean meat, nuts, fish, etc. in his diet, he was able to increase calories. He decreased fruit for fruit’s sake and nutritionally empty snacks. These changes resulted in improved muscle endurance, diminished muscle pain, and his weight remained steady.

In his book on aging – Dave Barry asks, “Are you willing to commit yourself totally to a program of regular exercise, close medical supervision, and the elimination of all nicotine, caffeine, alcohol, and rich foods, to be replaced by a strict diet of nutrition rich, kelp-like plant growths so unappetizing that they will make you actually lust for tofu?” Many people see nutrition in these terms but it doesn’t have to be that Draconian.

The basic principles are:

• Eat a variety of unprocessed (and little processed) foods

• with high nutrient density

• in moderate amounts

• during at least three regular meals a day, including breakfast,

• with protein at each meal

• combined with smart snacking patterns (including beverages)

• while drinking at least six glasses of fluid daily, two of them water,

• and taking a broad-based vitamin- mineral supplement.

• I don’t recommend megadoses of anything!

• You have too much Vitamin C in your system. I’m prescribing a cold.

Because you may be physically inactive, you may be at increased risk for osteoporosis. [That’s not the kind of bone loss we talk about.] I recommend increasing your intake of dietary calcium. You may want to consider estrogen (Premarin and too many other names to mention). Estrogen replacement in women is probably the nearest thing we have to an effective anti-aging drug. It decreases bone loss, reduces the risk of heart disease, decreases the risk of Alzheimer’s disease, reduces the risk of bowel and ovarian cancers, improves the suppleness of the skin and can even improve your sex life. There may or may not be an association between estrogen replacement and an increased risk of breast cancer. When I reach menopause, I plan to start taking estrogen. If you can’t tolerate estrogen then ask your doctor about bisphosphonates like Alendronate (Fosamax). These are fairly new drugs that can be used to reduce bone loss.

There are a few other things I would like to suggest under nutrition. I recommend you decrease your caffeine intake so you can monitor your fatigue more accurately. I also suggest you use alcohol in moderation. Alcohol inhibits swallowing, interferes with nutrition, and causes falls and accidents. Alcohol at bedtime interferes with the quality of your sleep. If you smoke, QUIT. [He doesn’t like it much, but it is the only place I let him smoke.] If you are a smoker, quitting smoking is the most effective anti-aging intervention you can make. If you don’t smoke, great.

3. Values & Goals Clarification

Gen. Douglas MacArthur said “Nobody grows old by merely living a number of years. People grow old only by deserting their ideals.” If you are aware of your major long term values, you can adjust your specific goals to your new limitations without feeling you are losing what is essentially you. Once you clarify your own values, you can set goals within your strength or endurance limits, and avoid going repeatedly to that limit. By doing so, you can reduce the fatigue, joint and muscle pain, muscle weakness, and psychological stresses of Post-polio Syndrome. You and experienced physical or occupational therapists can determine functional losses, assess extremity function, evaluate daily activities, and the need for assistive devices to help achieve the highest level of functioning possible. Even minor adjustments like changes in hobbies or modes of transportation can help. If you are aware of your basic values as you consider possible adaptations to your lifestyle you will find making appropriate adaptations much easier.

[Can you at least tell me what our company strategy is? No, I don’t want you to lose hope.] This cartoon is funny because we see the futility of working without goals yet many of us do exactly that in our personal lives. When you decide to clarify your values, begin by identifying 5 core values. A core value is an aspect of life that is particularly important to you. It may be something like being confident, learning, being creative, time with family, time with friends, exploring the world, success, helping others, laughing and enjoying, being in attractive surroundings, being independent, getting recognition or being challenged. Be honest with yourself about what matters to you. Don’t get trapped into living someone else’s values.

A goal is a specific long or short term objective you set for yourself. Find concrete, realistic ways to express core values more frequently in your life. These are your “valued experiences,” the things you really love to do. Prioritize your valued experiences and plan for specific action for opportunities to enjoy them. Make small, specific, concrete changes that reflect your core values.

[The art of free hand drawing.] This gentleman has found a way to express his creativity in a very difficult situation. It was Katharine Graham who said “To love what you do and feel that it matters – how could anything be more fun?

4. Self affirming Communication

A satisfying long term relationship is one of the main determinants of a long and happy life. Good communication skills will help you to develop and maintain satisfying long term relationships. [I interrupt this program for a very brief message.] Self affirming communication means having the courage to reveal to others who you are and what you want, expressing yourself assertively and listening actively, and replacing self-defeating communication behaviors and styles with selfaffirming communication skills.

The four major areas of communication are, nonverbal communication, self-assertive language, giving and receiving feedback, and active listening. [This makes my face hurt.] Nonverbal communication includes clear and appropriate voice skills. Your body skills may change with polio or Post-polio Syndrome.

Self-assertive language is used when you say I when you mean I. For example, I want you to… rather than It would be better if you… Use “yes” and “no” not long involved explanations. Don’t explain or apologize without reason. Avoid the word “but”, it negates whatever you have said before it.

Another very important communication skill is giving and receiving feedback. When you give feedback, avoid value judgements by describing a situation. Be specific with your concerns. Report the impact of a behavior without judging the behavior. The best feedback is solicited, focused on things that can be changed, and immediate. When you are getting feedback, get more than one person’s feedback.

Active listening is much easier if you frame the conversation. Try to set limits and impose structure on the information you are receiving. Recognize that disturbance takes precedence if you are not comfortable standing, stop the conversation by explaining you need to sit down, sit down, and then continue the conversation. Try to listen to both verbal and non-verbal messages. Recreate what you are hearing and play it back to the speaker. [Oh they’re very good talkers, but they don’t listen worth a damn.]

5. Appropriate Exercise

Get enough exercise to prevent disuse atrophy, but not enough to produce overuse damage. Many survivors are prescribed or actually ask for the kind of physical therapy they had right after polio: exercising to the point of exhaustion. Several studies show that pumping iron will not increase the strength of muscles that are becoming weaker, and can actually cause an irreversible loss of strength.

After a 1997 study by A.J. McComas of McMaster University in which he actually counted neurons to assess damage, he warned, “Our findings make clear that polio survivors should not be treated using electrical stimulation that causes muscle contraction, nor should they engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking.”

In other words, No free weights, No exercise bikes, No tread mills, No NordicTracs and No Thighmasters for polio survivors. “Feeling the burn” means you are fatiguing your muscles. “Feeling the burn” means nerves are burning out. [Maybe you should ease up on your exercise program.]

With all this damage possible, one might ask why a polio survivor might want to exercise? Well, first, it worked for you after your polio infection. You may have been told regularly how much exercise made you strong. I know I was. You may have received a lot of encouragement and reward

for exercising early in life. Lessons learned early in life, tend to be difficult to unlearn. You may hope to increase you life span. Life span is reported to average only 2 years longer in those who exercised as opposed to those who didn’t.

Exercise is great if you can do it but remember if you can not exercise, there are other ways to get many of the benefits. Exercise relaxes your body and your mind and releases endorphins. You can get these results through meditation techniques and relaxation. You may want to exercise to ensure better health. To improve heart and lung function, you can use focused breathing. Good nutrition can very effectively control weight, reduce the risk of diabetes and prevent osteoporosis.

A good exercise program has a mix of suppleness, strength and stamina. Muscle stretching and joint range-of-motion exercises are important where there is muscle weakness. Stretching, helps decrease pain and increase range of motion. To improve your suppleness try gentle yoga or other stretching exercises.

Do exercises for strength only with great care. Gentle, non-fatiguing exercises are useful for many polio survivors to maintain muscle strength and tone. If you are experiencing increasing muscle weakness, exercise only under the supervision of a knowledgeable physician or physiotherapist. Discontinue any exercise that causes pain, weakness, or muscle fatigue, including walking. To start an exercise program for strength, first find out which muscles are polio damaged. You build strength in the undamaged muscles using ordinary muscle strengthening methods. For the polio damaged muscles figure out how much weight will fatigue them. Then, lift only 30% of that amount with the damaged muscles. DO NOT FATIGUE the damaged muscles.

To decide if you should exercise for stamina, find out if you can get your heart rate up to training range (220 minus your age) without fatiguing any polio damaged muscles? If you can, get your heart rate into training range for about 20 minutes about 3 times a week for stamina. If you can not get your heart rate up to training range without fatiguing any polio damaged muscles, do not do exercises for stamina. You might want to try laughter. Dr. William Fry found that about 100 laughs a day is equivalent to ten minutes of rowing a boat for its aerobic impact. Sex can also be an excellent aerobic activity. If you only have the stamina for one aerobic activity let this be it! Always remember, with any exercise activity, adapt it to your level to avoid fatiguing you muscles.

There are many books on aging. The local library had three columns. Each of the local book stores had a whole section on lifestyle and aging. The books I found most useful are Your Vitality Quotient, Earle, R., Imrie, D., & Archibold, R., Random House of Canada Ltd., Toronto, 1989 , Live Longer – Live Better, Reader’s Digest Assoc. (Canada) Ltd., 1995, and Reducing your Body Age, Earle, R., Imrie, D., & Archibold, R. They have a web site: at www.ivillage.com/bodyage/

We have come together (at this conference) to enjoy contact with and support from others with similar problems and to collect information. The information that we collect is most valuable if it can be used in our day to day lives. (As the conference continues, look for) information on these and other changes that might be valuable to you. Appreciate the things you are doing right. Rank the suggestions in the order that seems right for you. Plan your change. Break it down into small, permanent changes that you can make gradually. This whole conference will be a success for you if you can make just one long term life change using the information you gather here.

“[If you can’t be a good example, then you’ll just have to be a horrible warning]” Catherine Aird.

mmatheson@cabler.cableregina.com

DEFINITIONSyogurt: Semi-solid dairy product made from partially evaporated and fermented milk. Yogurt is one of only three foods that taste exactly the same as they sound. The other two are goulash and

squid.recipe: A series of step-by-step instructions for preparing ingredients you forgot to buy, in utensils you don’t own, to make a dish the dog won’t eat.

Script you can use to make a 6 Minute Relaxation Tape.

by Dr. Mavis Matheson.

Focused relaxation is an effective exercise for achieving a physically relaxed and mentally alert state.

By focusing your mind on the instructions, you will be able to experience comfortable feelings of heaviness, warmth, and deep relaxation in every part of your body.

With each time you practice, it will become easier and easier to relax whenever you choose. Begin by laying on your back or sitting comfortably in a chair.

Become aware of sounds inside the room and outside and allow yourself to be separate from them. Allow your thoughts to come and go.

Give yourself permission to enjoy this time for you relaxation.

As you focus on the instructions, your mind becomes more and more calm as your body becomes deeply relaxed.

(1 minute)

Let go of all physical, emotional and mental tension.

Inhale now and bring the air slowly down into your abdomen. Let your abdomen expand, and then

your chest…….. Exhale slowly, through your nose.

Once again, inhaling and filling your abdomen more and more, then let your chest expand as you continue inhaling.

Now pause… and exhale, releasing tension from your body.

And continue breathing in this way, consciously allowing the breathing to become slower and deeper.

(2 minutes)

As I count from 5 to 1, allow yourself to move into a deeper and deeper state of relaxation. Picture each number as clearly as you can. By the time I reach 1, your body will be even more relaxed and

your mind even calmer. 5……….. 4………… 3…………. 2…………. and 1……….

(3 minutes)

Become aware of how every part of your body feels and know that you can return to this state whenever you chose. Now enjoy this time for your relaxation as you silently repeat your affirmations.

(Possible Silent Affirmations) I relax at will

I breath fatigue away I sleep easily and soundly

My food gives me energy I choose actions that exress me I enjoy life fully.

(5 minutes)

Now, as I start to count from 1 to 5, you begin to come back to an awake and alert state. You find

yourself rising like a bubble to the surface of a pond. For the rest of today, you will continue to be

very alert and very focused. You will notice your body’s stress reactions and let them go.

Counting up now ……….. 1 ……….. 2 ……….. 3 … more and more awake ……… 4 ……….. and 5

(6 minutes)

SUNDAY MORNING

And now we come to Sunday morning,

faces scrubbed and ready for God. The week was

the gas bill past due; The week was

the water leak; The week was

the neighbor’s dog

digging in the peonies; The week was

lunch money lost and chicken pox.

The week has been depression with its wistful epic dreams of Eden.

The week has been another savage struggle to inherit the earth.

The week will be the weakness that may not be exercised;

the aching that cannot be excised or ignored.

The week will be the arm, the leg, the mind that falters long before its round of chores is done.

For want of more precise and perfect prayers

we glean from fallen hours our less than original sins; collect and sift and sort them into hopeful litanies perhaps the Mighty Maker will approve.

And so we come

to Sunday morning, Monday’s children every one;

faces scrubbed and ready for God.

©The Reverend Phillip W. Thetford, D.Min Pastor Ashland Presbyterian Church in Virginia, USA.

Dear Patients:

We know you’ve been patiently waiting your turn. Please don’t ask us how much longer it’ll be; we have no clue. But we do know you’ve been waiting too long when:

• You actually enjoy reading the magazines.

• Relatives are running over loved ones in the parking lot so they get seen faster.

• The other patients are taking breakfast orders.

• The guy on Long Term Disability has gone back to work.

• Your wife calls and tells you she’s had a baby.

• You forgot your name and missed your turn.

• You finish War and Peace for the third time.

• You phone home and and out you are a grandparent.

• You’ve used up your entire vacation.

• Your fracture’s healed.

• Everyone in the room now has the same rash you came in with.

• The bathroom doesn’t seem so dirty anymore…

Sent in by Rev. Karen Utz, Dayton PA, USA popette@client.alltel.net

Just for FunFood Spoilage Test – How to tell when items are spoiled.EGGS – When something starts pecking its way out of the shell, the egg is probably past its

prime.CARROTS – A carrot that you can tie a clove hitch in is not fresh. FLOUR – Flour is spoiled when it wiggles.POTATOES – Fresh potatoes do not have roots, branches, or dense, leafy undergrowth.FROZEN FOODS – Frozen foods that have become an integral part of the defrosting problem in your freezer will probably be spoiled (or wrecked anyway) by the time you pry them out with a kitchen knife.

Sylvia Dymond from Hampshire, UK

It was in 1953 that I returned to work after contracting polio in June 1950. The GPO kept my job open for me during my long stay in hospital and physiotherapy as an out patient. My concern was how I would return to work, and how I would be able to get there. I wondered if I would be able to get on a bus, so as my father worked for London Transport he arranged for an old bus to be put in the grounds of the hospital I was attending near to the physiotherapy department, and I and other polio’s who wanted to try to get onto the bus did so. I eventually went back to my job at the local telephone exchange. I literally pulled myself up three flights of stairs with a calliper on one leg and a spinal support. My job as a GPO telephonist helped me to recover, stretching as I had to on the switchboard helped my left arm to strengthen.

However…. now I tell a different story. I feel I am one of the forgotten Polio’s as far as the NHS are concerned. I was not getting anywhere with my collapsing body so I decided to get some private appointments. Taking my PPS information I first made an appointment with an orthotist who had a surgical support made for me which has made a considerable difference. Then a physio, who said that with the support on I should not remain sitting for much more than an hour at a time, lying down in between. She is also sorting out a set of gentle exercise to help me. So it seems that we can get the right help if we pay. Its such a shame that most in the NHS these days know so little about the polio damage that was done and the problems we are getting now.

I have a few tips for those who suffer from the overwhelming fatigue. I invested in a powered adjustable bed with single massager in 91 but have just got a new one from a company called BAKARE where the massage effect has five choices. I could not now exist without such a bed. Not all beds raise up from the floor, mine does…. I could whitewash the ceiling if my arms were not so weak.

I have a separate massage pad in my armchair which also goes away with me, although going away is rare in this climate and we have to be certain that there is 24 hour heating. Many places now – even specialist homes – still turn their heating off in the summer and some at night as well. Polio’s with cold intolerance just cannot manage like this. I have aromatherapy oils which I rub into my arms and knees, although I could do with a live in massager!! Couldn’t we all ladies?

Diane now living in France <DianeGaye@aol.com>

When I was 3, my grandfather died. My mother was very close to him and, since we were living in

Indiana and my grandparents near Albany New York, my parents went “East” for the funeral, leaving me and my sister with neighbors. This was in ’52. My earliest memories date from just before this – picking strawberries next to railroad tracks, pretty ladies in pink dresses with pink clouds around them (a wedding in an orchard), and so on. You’ll see why I mention this a little later. From what I have been told, we all went swimming. And sometime later I woke up from my nap, not being able to walk. Here all memories stop. Completely. Until I reached the age of 4½. I don’t remember all the horrors of being in the hospital. I don’t remember throwing toys out of the bed. I don’t remember not eating. I don’t remember rubbing chocolate pudding in my hair. And strangely enough, even though I remember my little brother as a baby (born when I was 4), I don’t remember those 5 years of daily exercises on the dining room table. From what I have read and have been told, this is probably a good thing.

So, for as long as I can remember, I have always had a brace on my left leg. But that never stopped me from climbing trees (and falling out of them, breaking the brace!), playing kickball (like baseball, but kicking a basketball instead of using a bat and ball) except that there was always someone to run the bases for me (“Diane’s at bat, who’s running?” – it was always so natural). I roller skated with one skate. Couldn’t ride a bike though, in spite of Daddy trying everything he could imagine, including tying me on! The other kids were just other kids, my friends. I had more problems with some adults. I will never forget or forgive a Mr. Maleski, my teacher in 4th and 5th grades. HE decided I couldn’t square dance with the others during gym. HE decided I shouldn’t play ball or go out to recess with the others, making me go to the infirmary to “lie down”. And my friends all thought this was unfair too!

Like most other polio survivors, there were the operations and such. When I was 6, I had a rather serious one (can’t remember exactly what, not that it matters). In the hospital, I was in a children’s ward with maybe 8 to 10 other kids, many of them much sicker than I. All of a sudden, I broke out in spots, like little pimples, all over my body. The doctors and nurses went wild. What on earth was happening? Post-operative shock? Followed blood tests and examinations and so on and they couldn’t find out what was wrong. When along came a young intern who took one look at me a cried “Chicken pox”!! And here I was in a ward with all those other children with an extremely contagious disease!. I was whipped out of that ward so fast that it would make your head spin. And so fast that they didn’t even tell my mother!!

Later, in high school, I babysat, went to the dances, looked after my brother and my sisters when Mom was too busy (I’m the oldest of 5), dated, went over the state line to go drinking (legal age 21 in Connecticut, 18 in New York), and everything else everyone else did in the 60’s. Graduated 4th in my class and went on to college in Pittsburgh where I met Henri, got married, dropped out, worked, followed him to France, had two kids, held down several jobs and finally became a translator. Uninteresting, full, satisfying life.

What am I trying to prove with all this “normality”? I don’t really know. I think my polio was harder on my mother than on me. She was the one who had to stand there when I fell and say “Get up by yourself’. She was the one who felt guilty all her life. I got pretty fed up with that guilt business about 20 years ago. So I said “Do you like me as a person? Yes? OK, the polio made me what I am, so just cut it out”. A friend here in France once said that my biggest handicap isn’t the brace but my American accent. Another said that just looking at a picture of me makes him want to smile.

The problem is that now, I get exhausted when I try to do housework (fortunately, I have a cleaning lady twice a week). I can’t stand to iron Henri’s shirts anymore. I can’t walk around Paris (or any other city) with him anymore. Grocery shopping is possible as long as I am the one to push the cart. Is this the polio or is this just being nearly 50? A part of me is trying to convince myself that I am just getting old (and fat!) and out of shape, denying that this brace on my leg is making any difference.

So there you are. When I read about other polio survivors, I feel as though I am reading about myself, in a way. I feel as though I am waking up out of some kind of dream and finally having to

face the fact that I did have polio and that maybe I will have to do something about it. I feel better having written it.

Dealing With My Fear, Anger, And Negative Thinking

Those of us with PPS often have to deal with a lot more than our pain, brain fog, and the shock of suddenly being disabled after years of living and working hard. We have to deal with our fears, anger, and negative thoughts about our new situation in life. I know because I’ve been there!

With PPS I’ve had lots of fear haven’t you? Whenever a fear gets my attention: my first response is to run and hide. However, admitting my fear is always the best thing I can do. Admitting it, talking about it, and asking questions about it disempowers the fear’s grip on me and puts me in the drivers seat. Keeping the fear locked inside myself, on the other hand, is extremely toxic. I know that it will eventually eat me up; at the very least, I will waste more of my precious energy on it.

All of us with PPS have similar fears, and I for one never look forward to something that is going to bring me pain or insist that I have to design a new lifestyle for myself. But it all doesn’t have to be done today. That would be too overwhelming. All we have to do is take it just one minute at a time. I’ve come to the realization that I must keep things simple and find easy ways of doing things. That makes my life manageable.

I’ve felt a lot of anger, too, in not being able to do everything that I used to be able to do. Haven’t you experienced this? My anger was consuming me at such a rapid rate a few years ago that finally I had 2 choices: let it kill me or reach out for help. Since then I’ve been in therapy and sought help from 12-Step meetings, where I heard people who’d been there for a while talk about all of their gratitude. Gratitude! I didn’t want to hear about that! What did I have to be grateful for? I was filled with rage, and the fact that somebody sitting next to me was filled with gratitude made me even angrier!

I kept showing up at the meetings though, and every week I visited my therapist. Very gradually the anger started to fade, making room for some self-love and joy for the first time in my life since I was 7, when I had polio. The healing took lots of time, commitment, desire, and work. Healing from childhood traumas, including the effects of polio, is a full-time job for me, but I’m * GRATEFUL * today!

Have you heard the saying that if you change your thoughts you can change your world? Well, my thoughts and my world were very dark and negative for a long time. Negative thoughts almost killed me. They certainly depleted my energy, held me prisoner, and robbed me of my joy. They kept me stuck in a very unhappy space.

I had to learn how to deal with the reality of my PPS. Yes, I had pain! Yes, I struggle all of the time to catch my breath! No, I can’t do a lot of things that I wish I could still do! This is what my reality is; but today I choose to face it, accept it, and not let it stop me from life. In spite of the physical problems that I must confront every single minute of the day, I am aware that I’m enveloped in all kinds of blessings and miracles each second of my existence. I don’t want to cloud my vision and my mind with “poor me” thinking any more. I’ve wasted enough of my life living that way. Today I want to be able to laugh, sing, and enjoy my daughter’s smile and my husband’s hug … as well as the bright, wan sunshine. And I know how to do that today.

The blessings are there for our taking and enjoying right this very minute. In the midst of our PPS pain, there they are; but the only way we can realize them is to anchor ourselves in the moment, open our hearts, remove the self-pity from our eyes and minds, and then … watch out! Life will radiate with richness, fullness, and joy!

PS. I have had a tracheostomy for eight years now.

Carol Swedberg Meyer – 74 Prescott Dr. N. Chelmsford, MA 01863-1942 USA <CKSwedberg@aol.com>

Martyn Bailey LincsPPN member from Derbyshire visits Eugenia Provence in Seattle.

Thank you so much for letting me know that Martyn Bailey and his family from Derbyshire were coming. They flew to Vancouver, then drove to Seattle, where they met up with his brother and sister-in-law.

Martyn said his PPS was diagnosed about a year ago, and is very fortunate because his employers are providing him with a car adapted with hand controls, as well as a power wheelchair. Like all of us, he’s still coming to terms with the need to make these accommodations.

I gave him copies of some tips on occupational and physical therapy that my PPS specialist, Dr. Stanley Yarnell, had given me, so that he could share these with his doctor. His doc doesn’t sound very aware, because he has a plan for (what sounds like much too strenuous) physical therapy when Martyn returns.

It was so wonderful to be able to share experiences, and he’s persuaded me to get the disabled parking permit I’ve been resisting for so long. Also, has given me hopes that I can still do long trips. I believe I convinced him that power wheelchair would be the best thing that he ever did. Or I hope I did!

LINCOLNSHIRE POST POLIO NETWORK – ANNUAL GENERAL MEETING.

11.30 A.M. SATURDAY 19TH SEPTEMBER 1998

Chairman – Lynn Hobday Vice Chairman and Web Administrator – Chris Salter

Treasurer – Jean Tapper Secretary – Hilary Hallam

Committee members Christine Ayre, Phil Bilton

ANCASTER DAY CENTRE BOUNDARY STREET – LINCOLN

11.30 a.m. prompt

followed by BUFFET LUNCH – approx 12.30 p.m. (£2 – booking essential)

SPEAKERS AT 2.00 P.M.

including Dr. Alan Whiteley, Consultant Neurologist, Queens Medical Centre.

REFRESHMENT BREAK QUESTION TIME

A full copy of the Lincolnshire Post-Polio Library will be available plus lots of other information, including photos of polio survivors (please bring photograph with you)and PPS Newsletters from around the World. Videos on Polio and PPS will be shown in another room.

INFORMAL EVENING

Join us at the Halfway House, on the A46 at Swinderby – 7.00p.m. onwards. Large choice of menu available 7.00 – 8.30 p.m.

SUNDAY TOUR THE CATHEDRAL, CASTLE, LAWN VISITORS CENTRE, LINCOLNSHIRE LIFE MUSEUM AREA.

Contact us for Information on B & B in the area 01522 888601 There is a caravan park in Hartsholme Park, Skellingthorpe Road, Lincoln.

Please Fill in the Slip below

I/We:
will attend the AGM	YES/NO
Buffet Lunch (£2.00 per person)Vegetarians catered for.	YES/NO	No:
Speakers Session at 2.00 p.m.	YES/NO
Informal Evening – 7.00 p.m. onwards Halfway House Inn, A46 Swinderby	YES/NO	No:
Sunday late morning visit in Lincoln Cathedral Area.	YES/NO

Nominations for Committee Members

I am a paid up member of the Lincolnshire Post-Polio Network and I would like to nominate for the post of I would like to nominate for the post of I would like to nominate for the post of I would like to nominate for the post of

Please use a seperate sheet if you wish to make more nominations.

Lincolnshire Post-Polio Library

Articles added since last newsletter with grateful thanks to the authors

Title: Muscle Recovery in Poliomyelitis

Author(s): W. J. W. Sharrard, London, England

Original Publication: The Journal of Bone and Joint Surgery, Vol 37 B, No. 1, February 1955:63-79.

Abstract/Extract:

1. The results of a three-year study of recovery in 3,033 lower limb muscles and 1,905 upper limb muscles in 142 patients are presented.

2. The rate of recovery of partly paralysed muscles is the same in all muscles and muscle

groups in the lower or upper limb. Clinical differences in the ability of individual

muscles to recover depend upon the proportions of their number that remain permanently paralysed.

3. The rate of recovery is slowest in adults and most rapid in young children.

4. The amount of further recovery to be expected in a muscle can be predicted from

knowledge of its grade at any time after one month from the onset of the paralysis.

Fourteen-fifteenths of the total amount of recovery takes place by the beginning of the

twelfth month; with rare exceptions individual muscle recovery is complete after

twenty-four months.

5. Ninety per cent of muscles that are still completely paralysed after six months remain

permanently paralysed.

6. The prognosis of a completely paralysed muscle is related to the level of paralysis in

muscles supplied by the same spinal segments.

7. Deterioration in power in a muscle is uncommon and, when it occurs, is associated

with the presence of the strong opposing force of antagonist muscles or of gravity.

8. The application of these findings to the management of cases of paralytic acute

anterior poliomyelitis is discussed.

Title: The Distribution of the Permanent Paralysis in the Lower Limb in Poliomyelitis A Clinical and Pathological Study

Author(s): W. J. W. Sharrard, London, England

Original Publication: The Journal of Bone and Joint Surgery, Vol 37 B, No. 4, November 1955:540-558.

Abstract/Extract:

Though a striking feature of the paralysis that may result from an attack of poliomyelitis is its diversity, the belief that some order exists in the apparently irregular distribution of the permanent paralysis has been expressed by several authors. Wickman (1913) stated that “although a great variety of combinations of paralyses are found, certain types appear more often than others; in the leg the peroneal group and certain muscles of the thigh — in my experience the quadriceps femoris especially — tend to be implicated.” Lovett and Lucas (1908), Lovett (1915, 1917), Jahss (1917), Mitchell (1925) and Legg (1929, 1937) showed tables indicating the relative frequency of paralysis and paresis in the muscles of the lower limb. All show a high incidence of paralysis in tibialis anterior, tibialis posterior, the long extensors of the toes and the peronei. A lower incidence of paralysis but a greater combined total of paralyses and pareses is shown in the quadriceps and in the gluteal muscles. No satisfactory explanation has yet been offered to account for these findings

It is the object of this paper to review the distribution of paresis and paralysis in the muscles of the lower limb, to account for its disposition in terms of the destruction of motor nerve cells in the lumbo-sacral spinal cord, and to indicate the practical application of the findings in the management of poliomyelitis.

Title: Anticholinesterases in Post-Poliomyelitis Syndrome Author(s): Daria A. Trojan and Neil R. Cashman

Original Publication: The Post-Polio Syndrome: Advances in the Pathogenesis and Treatment Volume 753 of the Annals of the New York Academy of Sciences May 25, 1995

Abstract/Extract: Our studies indicate that a proportion of fatigued postpoliomyelitis patients can experience an amelioration of defects in neuromuscular junction transmission and of clinical fatigue with anticholinesterases. Because S-SFEMG response was significantly associated with clinical response to anticholinesterases, fatigue in PPS may be caused by defects in neuromuscular junction transmission in a proportion of patients.

Preliminary studies in a small group of patients indicate that anticholinesterases may produce their clinical neuromuscular response by producing an increase in isokinetic strength in a proportion of patients. Our studies provide a physiological rationale for the use of anticholinesterases in PPS for the symptom of fatigue. However, further randomized, placebocontrolled, double-blinded trials are needed to establish definitively the benefits and risks of these agents.

Title: Dr. Henry writes about Ambien

Author(s): Henry Holland MD

Original Publication: SJU Polio mailing list. [Note this Library edition has been updated].

Abstract/Extract: I have personally prescribed Ambien for patients for longer than one month time periods, but in PPSers, one must be convinced that the

Ambien is not hiding an underlying respiratory or sleep apnea problem and that the Ambien is not contributing to an underlying respiratory problem. If there is an existent sleep apnea problem or respiratory difficulties, Ambien should be used with caution and only under the supervison of a physician familiar with PPS as it may intensify the existent problem.

Managing Post-Polio A Guide to Living Well with Post-Polio Syndrome

Edited by Lauro S. Halstead, M.D. Published by NRH (National Rehabilitation Hospital) Press

“An all new guide to living with post-polio from NRH Press by Lauro S. Halstead, M.D., internationally renowned post-polio expert and polio survivor. Managing Post-Polio provides polio survivors, family members, support group members, and health care professionals with a longneeded tool to assist individuals with post-polio syndrome to live healthier, fuller lives.

This easy-to-read, consumer-orientated guide is designed to help with day-to-day living with this often misdiagnosed and debilitating condition. Managing Post-Polio deals directly and openly with the issues that confront polio survivors as this condition develops, and provides assistance and support for the ongoing management of their problems.

Excerpt from Chapter 13, written by Anne C Gawne and Tom Walter on page 189.

The Lincolnshire Post Polio Network site can be found at the following WWW home page address http://www.zynet.co.uk/ott/polio/lincolnshire/. It is maintained by the post polio support group in Lincolnshire, England and is a good place to start your search for information. Resources include a library of up-to-date articles, medical information and general facts about PPS.

Available Now – 256pp, 6 x 9 – Paperback (Hardback edition also available) $11.95

If you are in the UK and would like to order a copy through us then write and place your order as soon as possible. Cost including postage and packing is £10.00

More details about the book including the full text of the Introduction can be found in the Booklist section of our library.

LINCOLNSHIRE POST-POLIO NETWORK

Registered Charity No. 1064177

LincsPPN MEMBERS – Offering support in specific areas.

LincsPPN members are now offering support in specific areas. Ruth and Christine would like to collate your stories and information on their subjects – articles to appear in the LincPin. If you would like a polio pen pal then Sylvia has offered to help with this. Please send all letters, c/o of the LincsPPN or email Ruth and Christine directly. Any other offers – history of polio/calipers/people with young children/ read and write synopsis of stories on polio. In fact if you have an ideas of how you can help then please contact us.

NON PARALYTIC POLIO RESPIRATORY SUPPORT PEN PALS

Ruth Bridgens in Avon Christine Ayre in Lincolnshire Sylvia Dymond in Hampshire, UK.

pb.rb@virgin.netcatley@tesco.net

Articles for publication by September 25th – Publication date September 30th 1998 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

info@lincolnshirepostpolio.org.uk

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin9812.html> Last modification: 5th February 2010.

Linc Pin Volume 1 Issue 12 Read More »

Linc Pin Volume 1 Issue 11

Volume 1 – Issue No. 11 – June 1998 WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/ Registered Charity No. 1064177

CONTENTS

AGM Saturday 19th September 1998

Two LincsPPN members leave for the States and Canada on June 30th 1998 flying Virgin from Heathrow.

Attending the Ontario March of Dimes Conference PPS Solutions for the Future – July 10th to 12th in Toronto.

Visiting the West Park Post Polio Clinic in Toronto.

Meeting Dr. Lauro Halstead, Dr. Henry Holland, Dr. Neil Cashman, Dr. Mavis Matheson, Joan Walker PhD PT, Jann Hartman BSc. and more meetings being arranged.

All have articles on our WebSite.

Also meeting many Polio Survivors on a 2000 mile route New York to Virginia into Canada and back to New York via Boston.

CONTENTS

This issue includes articles from our online library (our newsletter is distributed by post to many subscribers who do not have Internet access). Rather than duplicate the article in this online edition of the newsletter, I have instead just included a link to the library article. I have assumed that those of you who already have the article would prefer not to have to print it again if you wish to print this newsletter for your own use. However, if you are printing copies for further distribution we would ask you to print copies of the article as well.

Editorial by Hilary Hallam

Post-Polio Pain is a subject of interest to many of us. Edward Bollenbach, Professor of Biology

Rest, Pacing and Timing Grace R. Young, MA, OTR

Hints and Tips That Might Help You To Diet collected by Carole Lee

Motability by Joy McDuff

Henry Holland MD – Medical Credentials Lincolnshire Post-Polio Library Article

Dr. Henry writes about Normalcy Lincolnshire Post-Polio Library Article

A Husbands story – Her New Scooter and how I could not keep up by Sebastian R. Alston

It’s Good To Talk by Christine Ayre

Polio Child A Poem by Brooke E. Tuft

Personal Perspectives through the Polio Experience by Marian

Polio – Then, Now and The Future From a Polio Survivors Perspective by Hilary Hallam

Kathleen’s Story – Lincolnshire In October 1917 by Kathleen B

Other Polio Survivors memories

Polio Survivors Communicating Around the World Hilary Hallam & Chris Salter

Strange Old Lady Rev. Karen Utz

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

A Look At Feet (for people with the late effects of polio) Lincolnshire Post-Polio Library Article

Our Contact Information

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

Lincolnshire Post-Polio Network

Editorial by Hilary Hallam

Another two months have gone by and the letters and phone calls for information continue to come in on a daily basis. Once again I ask if anyone has some spare time and would be prepared to take on a share of the work then please get in touch. You do not have to live in Lincoln, or Lincolnshire. There are many little jobs that can be done from home, or locally to where you live. We are having a Stand at the Lincoln City Football Club Gala Day on Sunday 26th July 1998.

Articles included in our newsletter are varied. I choose them to give you a variety of information not only for yourself but for the medical professionals that you are seeing. Many are far too long for inclusion but can be accessed on our WebSite or you can contact us for copies. Updates of new articles added to our WebSite will be included with each Newsletter.

On 17th May 1998 the Scottish Paper, the Sunday Post, printed an article about Post Polio. Janet Boyle their Health Correspondent rang because she had read the Dr. Lauro Halstead article in Scientific American April Issue (now available on our WebSite by kind permission from Dr. Halstead and Scientific American) and could I send her some more information. I sent her a large

pack of information, told her about our organisation and explained about our WebSite as the Sunday Post does not have access to the Internet. The article that was published did not mention the excellent Scientific American article or its content. Instead it used words such as dreaded, disease, haunt, crippling and victim. Most of the Polio Survivors who rang said it had really worried them. Our name was quoted incorrectly twice and our WebSite was not mentioned. The picture was incorrectly captioned. No wonder Journalists have such a poor reputation. To date we have received over 80 phone calls for information. Virtually every call was the same story. I have had problems for months to 15 years – and despite having many tests no-one can find any reasons for them and the fact that I had polio has hardly ever been mentioned. A few of the people who have contacted us are getting together to start their own network. We wish them well and look forward to including an article from them in our next newsletter.

Elizabeth Lounsbury, the Chairperson of the Ontario March of Dimes PPS Committee, paid us a flying visit last month and told us about their Toronto Conference July 10th – 12th, PPS Solutions for the Future. The LincsPPN do not have enough money to sponsor attendance at Conferences. However, I personally have to thank some friends and family for their financial support which has enabled me to join Lynn Singleton from Sussex in attending this Conference. We are leaving on June 30th – meeting at the Virgin Airlines Check-in Desk for the first time – and landing in New York. We are hiring a car and our route goes via Baltimore MD, Washington DC, Richmond VA, Dayton PA, Buffalo N.Y., and into Canada. To London, Toronto, Ottawa, Montreal, back into the USA, to Boston and back to New York and home on the 21st July. We wish to thank all the Polio Survivors who have offered us hospitality and organised events to meet many more and without which this trip would be impossible. We also thank the PPS Specialists who have agreed to meet us. I am grateful to the committee members who are stepping into the breach in my absence. All Email, Post and phone calls are being diverted during this time.

Ian Radus, a Polio Survivor from Johannesburg in South Africa, also paid a flying visit to Lincoln whilst visiting London to meet his new Grandson. He also met Lynn Singleton again for the first time in over 30 years. I was type chatting to Lynn on the Internet a month earlier – using ICQ, a communication program downloaded from www.mirabilis.com, – when a chance remark established that she knew Ian. A few weeks later the same thing happened when we were having a three way conversation with Mike & Yvonne in Cape Town – they were stunned to find they knew one another in Rhodesia, also over 30 years ago.

AGM Saturday 19th September 1998

We apologise for having to postpone this but it is now firmly fixed for Saturday 19th September at Ancaster Day Centre, Boundary Street, Lincoln. The AGM will commence at 11.30 am. sharp followed by buffet lunch – £2 – to enable you to get to know each other. Speakers – Dr. Alan M Whiteley, Consultant Neurologist will be the main speaker – at 2.00pm with break for cup of tea and loo visits. The break will be followed by question time. You are welcome to come for all or part of the day. All information, books, videos, etc and photos from trips will be available. We will be arranging an evening meal at another venue for those who wish to join us. There are members coming from long distances and if anyone would be able to offer accommodation then please let us know. Alternatively we have many hotels, motels, and B & B’s in the locality.

Post-Polio Pain is a subject of interest to many of us

What is its source? How can I alleviate it? Why do many physicians deny it? What exactly are these unpleasant sensations I feel? Why are they different from other types of pain….and on and on go the questions.

Suffering constant pain is extremely debilitating. In my opinion much more debilitating than

needing to use adaptive aids or needing to rest more often. When you are in constant unremitting pain you simply cannot function and enjoy the normal mundane activities that are a part of every life.

One of the problems with the pain of PPS is that physicians often don’t understand it. They wonder how the loss of motor nerves (as in ALS) can produce pain. Pain comes from Sensory nerves; not Motor nerves. I have heard physicians deny that the pain is muscle pain due to polio. This can then result in costly and unnecessary further testing to get at the cause of the pain and/or eventually labelling the patient as neurotic.

But Post-Polio muscle pain can be understood in the context of a muscle pain secondary to weakness. Polio patients are unique in so many ways. During recovery we learned to use our bodies and our muscles in different ways. Many muscles that were directly weakened by polio functioned because of reenervation by other neurons during recovery. We got stronger and were stable for many years. But now some of these substitute nerve connections are beginning to fail, slowly. Yet the body plods on and continues functioning the way it always has. The conscious and unconscious muscle movements, embedded in our being over a lifetime of success in movement, continues as if nothing is wrong. Well before we drop from muscle failure many muscles experience a metabolic exhaustion. And this utter fatigue may be felt in a number of ways. Most of it, I believe, is labelled as PAIN.

The pain is described in terms not usually heard by physicians listening to descriptions of pain. “I have a creepy crawly feeling”, “The back of my left leg is burning”, “I ache like I ran a marathon but didn’t do anything”. Personally, I remember a feeling akin to intense itching deep inside my right buttock and hamstring. It wouldn’t leave. It was with me all the time and caused me to become hyper alert. It lasted for years early on in my post-polio syndrome. I eventually got it under control by swimming and using various drugs that help relax muscles. But it was, by far, the worst thing I’ve had to deal with.

I believed I would feel better if only I knew other human beings had experienced the same sensations. I didn’t know what to call it. I read about parasthesia and thought it must be that. But parasthesia is a pins and needles feeling on the skin’s surface. One physician trying to help me told me it was dysesthesia, which essentially means “a feeling that is abnormal”. Finally, one day, I described the sensation to a physical therapist as I was talking to her about a wheelchair and the need for it to be comfortable. She said something that made the most sense to me: “it sounds like a fatigue phenomenon”. Absolutely! With PPS our problem is fatigue. If our muscles are sore (or in dysesthesia) it is because they are fatigued. And, once muscles are fatigued to the extent that postpolio muscles can become fatigued, it is difficult to get them back to a resting state. I believe this is so because the ordinary muscle tension (contraction of muscles) that exists is exacerbated in an extremely fatigued muscle. This puts us in a cycle of pain, muscle tension, fatigue, and back to pain.

Anything that can be done to rest painful muscles should be tried. Floating in water, and eventually swimming helped me. Drugs which help you feel more rested should be tried if you are in pain. Some of the antidepressants have been used for this. Elavil improves sleep and helps with polio pain in many cases. I believe that people who have a lot of muscle tension and naturally push themselves may benefit from a Selective Serotonin Re uptake Inhibitor like Paxil. I believe it works, when it does, by slowing down the drive to push on. This may have secondary effects in lessening muscle tension and consequent pain.

Unfortunately, most of the pain relief we experience will derive from our own behaviour and what we learn about our pain. Fortunately the situation is not hopeless.

Edward Bollenbach Professor of Biology

Northwestern Connecticut Community-Technical College Park Place, Winsted, Connecticut 06098 USA

edward.bollenbach@snet.net

REST, PACING AND TIMING

Grace R. Young, MA, OTR <gryoung@.PACBELL.NET>

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

REST

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

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

PACING

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

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

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

TIMING

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

HOW CAN YOU JUDGE IF AN ACTIVITY IS TOO STRESSFUL?

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

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

If there is a change in the quantity of movement; that is, decreased range of motion. For example, you can usually lift your arm to a certain height but that height lessens as you continue the activity. If you start to use compensatory movements. For example, you “hunch” your shoulder in order to

Grace Young WebSite

http://www.reocities.com/HotSprings/4713/

See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

ProverbsWhere children have added…. the second half.Strike while the… bug is close. Don’t bite the hand that …looks dirty.A penny saved…. is not much. Where there is smoke.. there is pollution. Two’s company, three’s.. the musketeers.Children should be seen and not… spanked or grounded.Laugh and the whole world laughs with you… cry and you have to blow your nose.

HINTS AND TIPS THAT MIGHT HELP YOU TO DIET

collected by Carole Lee – KaroleLee@aol.com

Dieting and not being able to exercise like we used to is difficult. Here are some day-to-day tricks and tips for dieting that I have collected.

Write down the reason for wanting to lose weight. Tape it on your refrigerator door as a constant reminder and incentive. Deal with only one day at a time. Don’t become too concerned about tomorrow. Today is your diet day and follow your program to help cut fats and calories.

Set a reasonable goal. Write down how many pounds you want to lose and then aim for it! Goalsetting is a “must” among dieters. It works! Have a positive attitude. Dieting is going to make you look and feel slimmer, younger and healthier. It is NOT a punishment!

There is no getting away from this simple trick: say “NO” to sugar, salt, and excess fat!

Weigh yourself only once a week.

Keep a record of all foods eaten and a weight record will give you encouragement in your program. Be wary about alcohol, most have too many fat-building calories.

Fiber is important in your program. Improve your intestinal organs and provide bulk to ease feeling of emptiness. You’ll have NO stomach growls if you get enough fiber in your diet.

Good sources: whole grain cereals, bran, wheat germ, fresh fruits and vegetables.

Diet doctors insist on having a good breakfast. Wholesome protein and carbohydrate breakfast such as a soft-boiled egg with whole-grain toast helps keep blood sugar in check. It eases craving for sugar, helps avoid mid-morning slump and eases the desire for bigger meals.

Trim fat from meat. Enjoy lean animal foods. Fish is also a good source of protein.

Broil, bake or pan-broil meats without adding extra fat. Use a rack in a roasting pan when broiling or baking meats to render our excess fat.

Keep fresh fruit ready-to-eat in your fridge, along with natural fruit juices. Arrange fresh fruit in crystal bowls around the house.

Enjoy carrot sticks, celery sticks & other raw veggies with low-fat cottage cheese or salt-free peanut butter.

Apple slices spread with salt-free peanut butter or unsweetened apple-sauce with a sprinkling of cinamon is a pleasant snack.

Fresh fruit salads, sprinkled with lemon juice to prevent browning, are always delicious!

Diluted Frozen fruit juices in ice cube trays or popsicle molds are great snacks.

Broiled tomato slices, sprinkled lightly with grated cheese and herbal seasonings and broiled until bubbly, are delightful.

Try frozen banana pops by peeling a banana, cut in half, dip in OJ (orange juice) and roll in bran. Then insert a wooden stick, wrap it and freeze.

Use plain yogurt mixed with fresh fruits, nuts or a little wheat germ. Ready-made fruit-flavored yogurts are higher in calories and often contain sugar.

Hard-boiled or deviled eggs are nutritious snacks.

Chicken or turkey salad, rolled up in a lettuce leaf makes superb snacks.

Baked beans provide excellent and filling protein. Mash them with a little chopped onion and use as a spread on crackers or breads.

Patience, Perseverance and Self-Control with your food plan, make dieting more palatable (little diet humor).

A woman called and asked, “Do airlines put your physical description on your beg so they know who’s luggage belongs to who?”I said, “No, why do you ask?”She replied, “Well, when I checked in with the airline, they put a tag on my luggage that said FAT, and I’m overweight. Is there any connection?”After putting her on hold for a minute while I “looked into it” (I was actually laughing). I came back and explained the city code for Fresno is FAT, and that the airline was just putting a destination tag on her luggage.

MOTABILITY

by Joy McDuff – Erith in Kent

My name is Joy McDuff and like many of you suffer from the Late Effects of Polio. I still work a full day at a fairly local Ford car dealership. I must admit that it is getting harder to get up each morning and to suffer a great deal of pain at the end of what now seems a long day. I was hoping to complete my working life at 60, but that may be a few years too far.

I do hope this short article on how to obtain a vehicle using your Disability Living Allowance may be of help to those of you that are not sure of how to use one of the following four ways to become mobile:

1. Outright Purchase

2. Motability Hire Purchase

3. Motability Three Year Contract Hire

4. Used Car Hire Purchase scheme

1. Outright Purchase.

This first method is to buy a new vehicle, at a reduced rate from which ever dealership or franchise you prefer. Usually the dealership will discount the vehicle by approximately 10% – 13%, selling you the car at wholesale price. This means you can pay for the vehicle outright or by using the dealership’s own hire purchase/credit system. This way is best if you do not have a full three years allowance, or if you wish to own the car, when it is paid for. You can use this method if you do not receive Disability Living Allowance (DLA), but do have an Orange Badge. Your local dealership will give you more details. If you collect Barclaycard points you can also put them towards the cost of a vehicle bought through the Outright Purchase scheme.

2. Motability Hire Purchase.

This scheme enables the disabled customer to purchase virtually any new car (though some dealerships exclude racy models). Repayments are met by handing over all or part of the Higher Rate Motability Component of the DLA to Motability Finance Ltd for four or five years – you decide how long. This scheme enables you to fit personal adaptations and not have to have them transferred to a new vehicle after three years, and you decide when you want to buy a newer model. A one year RAC breakdown cover and one year warranty is included with Ford vehicles. You would have to ask if this is the same with other franchises. As with scheme one, with this scheme you are responsible for all maintenance, servicing and insuring your vehicle. Again Barclaycard points can be used towards the cost of a car through the Motability Hire Purchase scheme.

3. Motability Three Year Contract Hire.

Over 95% of those using their allowance to obtain a vehicle opt for this scheme. It is an economical option which provides a package of after sales service to take all the worry out of your motoring.

You can exchange your allowance (and pay an initial deposit, if there is one) for a brand new car of you choice. This car will be serviced, maintained and insured for three years. There is an excess payment of £75 on any crash claim put through the insurers. You are covered by a full RAC membership, so there is no need to worry if you do breakdown, you will have roadside assistance on a new dedicated Motability telephone number direct to the RAC. After the initial deposit (if there is one) you only have to pay for fuel and oil. However excess mileage charges are payable if the annual 12,000 miles is exceeded.

If you need help to raise the initial deposit, you may be able to get financial assistance from Motability’s special charitable fund or from one of the other charities.

Most Ford dealerships have a full list of vehicles available on this scheme, many with no deposit, and this includes automatic transmissions. I would think that other dealerships do something similar. If adaptations are fitted to a Contract Hire vehicle they must be removed (or transferred to your new vehicle) when the vehicle is returned at the end of the three years. Most of my customers (some of them are now good friends) come in to choose their new vehicle about 4 – 6 months before their lease runs out. This means they can have their new car waiting for them on the day the old one returns. I also make sure that any adaptations are fitted to the new car or that the mechanic is available to transfer the adaptations over to the replacement car while we sign the paperwork. When applying for a vehicle on this scheme you will have to show your Drivers Licence and a copy will be taken for Motability Finance, and the same with your award notice. You can also obtain an exemption from paying Road Fund Licence (Road Tax) if you use any of these schemes and the vehicle is used for the benefit of the disabled person. You do not have to be the driver, you can nominate a member of your family or a friend to drive for you.

4. Used Car Hire purchase scheme.

All the above schemes deal with brand new cars. This as it’s title shows is for used cars. To qualify for this scheme you must have the Higher Rate Motability Component of the DLA for at least two years. M.F.L. will provide a fixed sum on finance for two or three years towards the purchase of a used car, subject to an AA inspection and valuation report. Your chosen vehicle should be less than five years old and have covered less than 60,000 miles. You will have to provide any shortfall between the price of the vehicle and the amount of finance provided. Again you will be responsible for all servicing, maintenance and insurance.

If any of the above schemes appeal to you, but you have not driven for a while, and are unsure whether you still can, there are assessment centres dotted all over the British Isle’s that for a small fee will put you into specially adapted vehicles and simulators to assess your ability to drive. This not only puts your mind at rest and sorts out the adaptations you might need; it lets the rest of the family know that you are quite capable, able and willing to go out on your own.

Disabled youngsters can drive from the age of 15. Motability have a scheme which pays for their driving lessons.

With Ford vehicles there is also the offer of a free mobile phone (you pay the monthly charge and your call charges), to take with you in the car in case of problems. There is one button dialling for the RAC.

If you would like more information you can write to me, land post I’m afraid, not connected to the intemet (yet!), or phone 01279 635666 and ask for an application pack for Motability. If you have an allowance book there is a blue page inside that you can post off, this again will bring the application pack to your door. I hope this will help you choose a vehicle for yourself and although I deal mainly with Fords, there are many franchises to choose from. So, go for it, get mobile, and enjoy the freedom and independence.

If any members would like to write to me then ring the Office for my address.

Articles from our Online Library

Title: Henry Holland MD – Medical Credentials

Title: Dr. Henry writes about Normalcy Author(s): Henry Holland MD

Abstract/Extract: In trying to understand something about the psychological effects of polio, we have often heard how most polio victims exercised and worked vigorously to regain a sense of being normal. In a general sense, this

usually meant trying to achieve a level of physical function and social function that was nearly equal to the pre-polio level of function and achievement. Many times this goal was unreachable in measurable physical function. For example, President Franklin Roosevelt firmly believed that he would walk again after his initial polio attack. He actively engaged in physical therapy for seven years trying to walk again. He never walked again, but he did

manage to walk for short distances with the assistance of two long leg braces, a cane, and a companion’s arm. A mystery does arise in attempting to explain the psychological impact that this tremendous effort made on the psyche and personalities of hosts of young polio victims.

A Husbands story

Her New Scooter and how I could not keep up

My wife had been getting increasingly frustrated. Her almost new scooter had only made a couple of trips to the warehouse discount store and a short business trip to Atlanta. She had thought that the scooter was her ride to freedom. What she didn’t count on was my inertia and the continued stress and depression that my job situation was causing. She wanted to go to Disneyworld, Niagara Falls, or the Smithsonian. I wanted to stay in my chair.

Finally, I relented and agreed to seek out a mountain trail to hike and ride. The ranger at the gate to the National Park suggested a trail that was totally accessible 64 miles up the road. My wife was itching to find a trail closer to the gate. After some “discussion”, we found a possible nature trail. After we crossed the road, we decided to take a trail to a campground. The nature trail appeared far too rough for a 3-wheel scooter.

Immediately after the nature trail branched off, our trail began to steadily climb. My wife’s scooter climbed without problems. I however became quickly exhausted. The moderate slope was continual. But I continued when I saw her eyes; the gleam that had been missing for years had returned.

Then I remembered the bears! I stopped and was completely trapped by my memories of the PBS and Discovery Channel documentaries on bear attacks. My wife offered to turn back. I could not think of ending her fun and continued the climb despite the bears. A few yards later I saw movement in the middle of the trail. yelled, “it could be a snake”. My wife eagerly rode ahead and saw that it was only a big butterfly. She laughed. Obviously, my 6 years of country living hadn’t erased my fears of nature.

The climb continued. I complained of my rapid pulse and sat down on a rock water fountain. My wife just continued to glow. She offered a few words of encouragement. I told her that the Park Service should place more benches along the path. She chuckled. I estimated that we had walked at least a couple of miles; she disagreed. I continued my crawl; the scooter continued its ride. I stopped and studied the map. I saw a small road on the map that connected to the main road and prayed that it would be there. I then thought we had almost reached the summit, but after a curve I saw that the moderate climb was still seemingly endless. My body was aching, my heart was pounding, and I was panting. My wife, however, was cruising.

Finally, I saw the connecting road ahead. I quickened my pace. She was a little disappointed but agreed to take the road back down to our van. We were not going to make the campground. I turned and was suddenly startled by a big animal. I hollered, ” Bear”. My wife laughed. It was just a large deer.

I walked and she rolled quickly and quietly down the hill. She needled me a little about the animals (real and imagined) that we had encountered along the trail. She was happy. I was exhausted. When we reached the car, I headed toward the store. At the door we saw a sign saying that sodas were available at the campground store 1 mile up the road. I cringed. I had thought we had to have walked 4 miles. My wife said I was dreaming. We drove the car up the road that paralleled the trail. I hit the odometer a few times. It just couldn’t be working. The place where we ended our climb was only 0.75 miles up the road.

As we drove away, I realized that the tables had been completely turned on this hike. My wife was fresh and happy, I was completely beat. I must have felt exactly like she had felt on all of the walks that I had begged her to take or that she had had to take in the years prior to her scooter. As we wound down the mountains, I understood post-polio a little better than I had before my hike.

Sebastian R. Alston – Afton, Virginia, USA

alston@cfw.com

PPS DictionaryElectric Scooter – Shoes with wheels and a seat. Cane – Third leg for balance.Electric Wheelchair – Freedom to do things I couldn’t before.

IT’S GOOD TO TALK

Having been forced to give up work two years ago due to late effects of polio, I am now able to take stock of my life. With positive thinking I have come to the conclusion that life is not so bad after all. Gone are the days when I had to get up at six o’clock and rush round getting ready, and then spend half an hour driving to work. After work doing shopping, cleaning, dog walking etc, with not a moment to spare. Now I am unable to do the housework, so I watch someone else making a much better job of it than I ever did. I don’t even walk the dogs in the same way, now I go on my electric scooter and the Bonzo’s run at the side. This has left me with time to spare to do the things I never had time for before. I now go to art classes, and computer classes. I do a lot of reading and have the time to spare looking for the books that are really of interest and if I now have a sleepless night its not a problem. I spend the night reading, drinking cocoa and delighting in the fact that I don’t have to get up early in the morning. I no longer go out on a horse, risking my neck on a cold winter morning trying to hold on to a horse who thinks he’s a cross between Red Rum and a bucking bronco. Instead I lie in bed with my Boxer Dog Ben at my side and listen to the intrepid riders going past on the road outside. This is a wonderful thing in the depths of Winter. By now you will have come to understand my positive way of thinking. Why not try for yourself? Don’t mourn the past, look to the future instead.

One of the ways I have found of having a bit of fun involves the telephone. How mad I used to get at the frequent phone calls I received from window, kitchen, bathroom, vacuum cleaner, and survey Companies. I now actually look forward to getting a call. I will give a rough outline of how I answer these calls and maybe you can try it for yourself.

Always be ready when you pick up the phone, expect it to be a salesman. When I pick up the phone they say,’Is that Mrs Ayre?” I say “Who dear?” When they repeat the name I say “Will you speak up as I’m a bit deaf”. They then repeat the name, and I welcome them as a long lost friend or relation and start to tell them all sorts of rubbish about an imaginary family. Things like Uncle Fred having his leg off, the cat having kittens and would they like one, the secret is to keep talking and not let them get a word in.

Another way I deal with a phone call is pretend I’m an answering machine. I live on the site of a Gilbertine Abbey*, so I use this as a theme for the call. I say this is a recorded message, The Abbess cannot answer at the moment but, if you require a prayer for the day press 1, for information about joining our order press 2, to make a donation press 3, to order from the Abbey shop press 4. The calls from people doing surveys are even more fun. I feed them all sorts of way out

information. One such caller asked me if I had Asthma? I replied “no but I have a corn on my foot”, then went on to tell of all the ailments of my imaginary family. When I was asked “did I have any pets?” I said yes, I have six dogs, fourteen cats, a donkey with three legs, ten chickens, one duck, fifty goldfish, and a Viet- namese pot bellied pig, and did the caller want to know all of my pets names? Why did she ring off? Was it something I said?

My other frequent caller is a wrong number when a woman calls she always asks for Rita. When the man gets the wrong number, he thinks he has Rita and launches straight into the conversation. Once he said, “are you coming round for a cup of tea and a piece of cake?”. So I said “yes where do you live?” Another time he started with, “I’ll meet you in the market place tomorrow at twelve o’clock”.”Oh good” I said, “how will I know you?” His reaction is always the same, a few seconds of silence and then, “Rita is that you?” I wonder what Rita is like, she seems to have an exciting life.

One wrong number caller I had at six o’clock one morning was not appreciated. A mans voice said, “Has he gone?” I said ‘Who?” He said “Charlie”. I said “Who’s Charlie?” That call has me a bit worried, why did he want to know if Charlie had gone, have I missed out on something? Surely not at six o’clock in the morning.

I’m now waiting for someone to call, does anyone want to ring me and make me an offer I can’t refuse? Don’t forget its good to talk.

Christine Ayre, Catley Abbey, Lincolnshire.

Members can get my telephone number by ringing our Secretary. I will be on the Internet soon.

Historical Note

GILBERT OF SEMPRINGHAM, founder. B. at Sempringham, c. 1085; d. there, 1189; cd 1202; f.d. 4 February. The founder of the only specifically English religious order. Being regarded as unfit for ordinary feudal life, he became parson of Sempringham in Lincolnshire, where his father was lord of the manor. In 1131 Gilbert oganized a group of young women of his parish into a religious community, under the Benedictine rule. Laysisters and brothers were added, a second house was founded, and in 1148 Gilbert provided chaplains for his nuns by establishing a body of canons following the Augustinian rule. This order grew rapidly, having men’s and women’s houses side by side and also monasteries of canons only, with leper hospitals and orphanages. As master general of it, St Gilbert set an admirable example of abstemious and devoted living, but the later years of his long life were seriously disturbed. When he was about eighty he was arrested and charged with sending help to St Thomas of Canterbury, who had taken refuge abroad from King Henry II; eventually the charge was dropped, although Gilbert refused to deny it on oath. Later still there was a revolt among his laybrothers, who grievously slandered the old man; the case was taken to Rome, where it was decided in his favour. St Gilbert lived to be over a hundred and passed his last years nearly blind, as a simple member of the order he had founded and governed. The Gilbertine Order came to an end when all its houses, over twenty in number, were suppressed by King Henry VIII.

Source: The Penguin Dictionary of Saints by Donald Attwater; revised and updated by Catherine Rachel John. ISBN 0 14 051123 7.

LincsPPN Web Administration

POLIO CHILD

Dear PPS Family, You are the only people that I know who might understand this poem and why I wrote it.

A child is softly crying, she’s maybe five or six.

The Doctor says no problem, your hurt we’re going to fix. Her eyes plead to her mother, but her mother does not see. She is talking to the Doctor, of the things that are to be. This child is listening to the words, but understanding not.

Why does she have to leave her house, and her little puppy Spot. She does not know what she did wrong, she is sorry she is sick. Mommy’s always fixed her hurts before, with a visit that was quick. But now she has to go away, to a place she hears them say.

It is called a Children’s Hospital, they must go this very day. She strains to listen as they talk, they’ve forgotten she is there.

In her little voice she says, “Please NO”, but they do not seem to care. At home as they get ready, she begs, “Please let me stay.” Her Mommy says “Now sweetie, you’ll be better in a day.”

The Doctor says that you must go, or you will not get well, Now you be brave her Mommy says, your Dad we must tell. She wants to please her Mommy, and please her Daddy too, But she is very frightened, and does not know what to do. And so she thinks a game she’ll play, pretend it is not her, That’s going to the hospital, but her little friend named Zer. This little friend, you understand, is only make believe, And thus begins the fantasy this little girl will weave. To shut out all the fear she feels, a new life she begins,

And Zer will be the child outside, to protect the girl within. The weeks and months that Zer endures, the loneliness and pain, The doctors saying to behave, and be good for the nurse Jane. All the yelling of the nurse, and threats if she should cry,

Why’d my mommy send me to this place, am I supposed to die. The man that was to help me swim, is taking off my clothes, He tells me not to be afraid, he wants to see me pose.

If that is true, the words he says, then why’s he touching me, And why is he undressing too, and saying this must be. Zer knows that he was very wrong, but he says it was play, He tells her that about this day, she should never ever say.

That night when it is time to sleep, she turns and hides her eyes, Why have the big people done this, she says and then she cries. Today is Sunday and the day, her family she will see, And maybe if she’s really good, and quiet as a bee.

They’ll see that she is different, and nice to be around,

And maybe want to take her home, if she doesn’t make a sound The time has come for them to leave, she holds her Daddy tight, She prays that she’s been good enough, and smiles so very bright. She looks into her Mommy’s eyes and says can I come, please, But they just smile and say good bye, her little hand they squeeze. They tell her that she should be good, and do what she is told, And that will make the doctors glad, so they won’t have to scold. The team are running down her cheeks, the nurse is holding tight, Why won’t my Mommy and Daddy, just take me home tonight.

This is a dream, the woman says, as she sits up in bed, But still she feels the horror that keeps running thru her head. For years her mind protected her, no memory of those years, This dream is like a haunting, of a childhood filled with fears.

To all who read my poem and.especially other Polio Survivors who may have been through similar experiences.

I have found that writing seems to help me. I have also noticed that where I have read something that I could relate to then I have been better able to talk about my own memories knowing I was not the lone ranger. I guess that is one of the reasons that I wrote this poem.

I guess there is also a third reason ……… a way to reach the “normals”, who I truly believe just do

not know. Our society has always kept very quiet about anything that is out of the norm or not politically correct.

I did feel somewhat better after I wrote this, and I know that it will take a long time before I can think of those times without crying and wondering why.

If any PPS group would like to use my poem in a Newsletter then they have my permission.

Brooke near Baltimore, Maryland USA

Personal Perspectives through the Polio Experience

Marian in Florida – <pelican9@WEBTV.NET>

Now that I have stopped denying my polio and begun accepting it, I believe I am a happier person. No longer must I prove that I am stronger than this disease. For years I denied this disease as though it was something outside myself — like dirt on my body that would wash off with enough scrubbings. But, of course, polio and its effects simply do not disappear. Polio is part of me, like a piece of my body. However, I am not polio. Does this make sense?

I do not choose to think of this malady in a positive or negative manner. I wish to simply accept it pragmatically. Of course, I would not wish it for myself. If it was a choice, then I’d rapidly choose, no thanks. Has it made me stronger? I doubt it. I simply lived the life that was dealt in the manner that my priorities dictated at the time. What would I be like IF polio had not attacked my body at 13 months old? Ah! That big IF. Who can say? I’ll never have a chance to find out. However, I must believe that my background and mindset would have sent me on a similar path — college, careers, marriage, children, supermom. Exploring the current feelings finds no anger, more or less satisfaction with life dealt.

I have come to believe that all people have disabilities of some kind. No one is without problems of some sort. This realisation has finally allowed me to understand that I am a good person, and begin to like myself regardless of the physical problems.

POLIO – THEN, NOW AND THE FUTURE

From a Polio Survivors Perspective

We, who had Polio in our earlier lives, had a huge struggle. Most of us were taken from our homes as tiny children to have many tests performed and treatments to follow. Lumbar punctures,

isolation, Iron lungs, callipers, spinal corsets and braces. Steaming hot wet wool wrappings rung out and placed on muscles, with sheets of rubber placed over that and then wool blankets placed over that to hold in the heat. Straight jackets at night. Plaster casts from head down to goodness knows where. Arms and legs positioned out at strange angles and plastered in place. Tied to bed frames. Electrical treatments. The list is endless.

If we were very young we probably did not even realize who our parents were. How were we to know that the Nurses we saw every day were not the parents that the other children talked about. Who were those people that came maybe every Sunday, maybe only once a month? Some parents could not manage to travel more than once a year. When we saw them the next time, did we even recognize them. Who were they? Then came the operations, often during the school holidays, and the teasing at school. We were always the odd one out. We couldn’t join in, we couldn’t run. We weren’t able to go on that school trip ‘it’s more than you can manage.’ On Sports Day we could finally be included but in the obstacle race, because everyone is slow in that.

‘No Pain, No Gain.’ How many times did we hear that, in those years when we had endless exercises to do, endless operations and endless physiotherapy. So what did we do? We pushed ourselves, we achieved. Many of us threw away those callipers, crutches and corsets. We hid our disability. We passed exam after exam. We went to colleges, universities and got all sorts of white collar jobs that required more education than average. We worked hard, we had to prove to the world that we were as good as anyone else. Most of us got married, had families, and on we pushed.

What does a polio survivor look like? Well, if we are wearing a calliper then it’s easy. That half hour lecture that most health professionals have covering ‘contagious diseases’ tells you that’s what polio looks like. It put us in callipers, and wheelchairs. But what about those of us that do not show an easily visible sign of having had polio. We don’t have a withered limb or a shorter leg or callipers. We probably don’t have any medical records from those earlier years. We have moved again and again, and records that should have been sent on were not. Hospitals closed or decided that after so many years there was no need to keep old records and they were destroyed.

Then we get to NOW. We are very positive go getting types who are always on the go, never stopping. Working full time, doing volunteer work, sports, and being involved with organizations of all sorts. We develop a problem that takes us to the doctor. These problems begin with increased pain and overall body fatigue. We begin doing less in our home lives so we can function at work. Some notice that all of a sudden we are having more incidents of choking when we eat. Many of us have to go back and pick up that cane or dig out that old calliper because we begin to fall more easily. Now, however, our bodies are no longer young and the falls hurt more and do more damage. We never had to ask for help before, and asking for help now comes at a great emotional price We find that a cold or the flu turns into life threatening pneumonia. We begin to notice that a good nights sleep is hard to come by, as muscle pain and bone pain take over our lives. We tell our physicians and are told we need to lose weight and exercise more. OK, we’ll concede that we are overweight, and all our lives exercise was the thing that keep us functioning. Now we find exercising only makes us feel more on the verge of collapse, makes our legs feel more out of control and increases our pain levels. First we get a few pills, then we might get some hospital tests. Nothing is found. We are in limbo. We know we have a problem, but it’s suggested that as nothing physical has been found, maybe it’s psychological, all in our head. We are imagining it. So a few more months, which tum into years go by. We have more problems, more pills, more tests, and still no reason can be found. Three, five, ten or even more years of problems. If we are lucky and hear about Polio Survivors having new problems then we look for more information. The story is nearly always the same. ‘My problems have been Medically Noted yet remain Unexplained.

Polio, is hardly ever taken into the equation by the medical providers. It’s your age, it’s the old polio, it’s psychological are the suggestions. Get more exercise is often the response. Typically you will try very hard at this. You become more and more fatigued. but you push harder and harder. You become frustrated. Not depressed in a clinical sense most of the time, but frustrated. You know you

have a problem, or problems. You know your body did not work like this before but you cant get any answers. What are you to do? You can’t do as much at home. You start having problems with falling asleep in the chair. Your family and often you yourself think you are being lazy. You are 60, 50 even 40 and you can’t climb the stairs without pulling yourself up by the rail. You go to walk up hills that you walked up 2 years ago, and you can’t do it. You can’t manage to rearrange a room at one go, or garden like you used to. You start to use convenience foods as you can’t stand for as long in the kitchen. You go to a dance, and you manage a couple and sit out the rest. A few years earlier you could dance all night. What is happening to you?

Health Professionals, we know that there are no tests to show Post Polio Syndrome. We know that you can only make a diagnosis by exclusion of other conditions. We certainly don’t want you to say “You had Polio, it’s PPS”, and miss something else we might have. We know we are getting older. But we do know our own bodies and how they were in the past, what we have achieved with them, and we can see that something is happening.

All we are asking is that you take the fact that we had Polio into the equation when diagnosing our symptoms. That you listen to our story of when we had polio even though we have no records. That you leam more about what Polio is and what it did to our bodies. That you go back to those medical articles of the 50’s and 60’s. That you look at the mass of information about Post Polio Syndrome that there is available from those specialists in PPS.

We ask that you understand that we will still want to push ourselves to the limit. That we might not want to talk about what could be happening to our bodies. We will not want to think about the future, and we might have blocked out what happened to us in the past. We will not want to use aids and assistive devices. We will not want to have to go to part time work, or to take early retirement. Ask us if we can manage to do something, like shop in a supermarket and the majority of us will say, ‘of course’. Ask ‘can you go shopping in a supermarket and then go home and clean one room’, and we are likely to reply,’Oh No, if I did that then I would not be able to cook a meal, or do the washing. I have to do the shopping one day, the washing the next, and I have someone come to mow my lawn’. Then ask us what we did five years ago. ‘Oh all of it, plus I used to go out to work, and take the children to their clubs and…..and…..and…..’

There is much work to be done in the UK to promote the awareness that Polio Survivors can have new problems in later life. Considering it was first noted in 1875, it’s incongruous that here we are nearly into the 21st Century and we are having to ask you – the Health Professionals in the UK – to look at the information we have collected. It’s not easy. No Medical professional wants a patient to bring information to them that they know little about.

We want to ask this of each health professional that comes upon a patient that has had polio. Examine us holistically, listen to what we have to say. Then, make an informed decision as to what to do next. If you have not come across this problem before, then look at the information that is available from around the World, and talk to others who are now starting to specialize in the problems that Polio Survivors can have in later life.

Diagnose our symptoms into categories. Advise, treat and refer us on when necessary. Help us come to terms with having to change our lifestyle from doing everything and more at a fast rate, to slowing down and doing tasks in stages, resting in between. Help us come to terms with having to walk with a cane, use an electric scooter or wheelchair to conserve our energy. OT’s help us see that if we alter our houses a little such as, a downstairs toilet, a walk-in shower, a higher bed, etc that we can begin to stop wasting the energy that we do have. Physio’s work with us individually to find a gentle set of exercises that will help us keep range of movement, even if it’s only one repetition a day of some movements. Dietitians help us to work out a balanced menu that will take into account the much reduced energy we are able to expend. Counsellors help us talk out all our past that has been blocked away, help us cope with now and move on to a future.

Going back to, or using for the first time, aids and assistive devices, filling out DLA forms etc., are

extremely stressful times. We have fought all these years not to be ‘disabled’ and now we have to admit that we are ‘less able’. It’s a total turn round. It’s not easy. It’s not something we would choose. This is a new phase in our lives. Help us – now – and we will be as successful in this phase – the future – as we have been in the past.

From Polio Survivors all over the World.

Hilary Hallam

Kathleen’s Story – Lincolnshire In October 1917

In October 1917 six young children and myself contracted Infantile Paralysis (as polio was then known). We all lived in a small Lincolnshire village.

The six children had comparatively mild attacks, progressed well and with little lasting effects. I was five and a half and not so lucky – my attack was more severe. In the early stages I was without use in any of my limbs. After some months I regained enough strength to sit up and was able to feed myself. For three years I received little or no treatment. A stay of six weeks in the local hospital proved of no benefit.

A decision was taken that once the Great War was over and bombing in London ceased, I should be admitted to the National Hospital, Queen’s Square, London. However, I was eight years old when a bed became available. During the waiting period our family doctor recommended that, during the day, I should lie on a wooden door like frame on top of a sofa. My bad left leg to be tied at the ankle at the higher end with my head at the lower end. The reasoning for this being that the weight of my body would stop the ligaments from drawing up my leg. This did not work and my leg became bent. On admission to the National the ligaments were cut in order to release the knee. During my twenty six weeks there treatments included massage, exercises and electric shock treatment (how I dreaded the latter). I was fitted with a plaster cast from toes to thigh on my bad leg, which was taken off each night and put back in the morning. It was open down the front end and fastened by hooks and a long lace. A spinal support was also fitted and made from a quarter inch thick strong stiff material, with steel supports down the sides, which was extremely hot in summer. After not walking for three and a half years I had to be retaught to do so, but only indoors and in the garden, with a wheelchair made for the street.

After a year the leg plaster began to break at the ankle. I was then sent for a replacement to the Kensinaton War Supply Department. After another year I was again admitted to the National Hospital for a completely new appliance, where I stayed for a further twenty four weeks – with the same treatment.

At eleven and a half I again went to the National for seven weeks only. I was then fitted with a steel and leather calliper and steel and canvas spinal jacket with small crutches attached for shoulder support. I have worn a similar type of appliance since then (74 years). Anyone who has worn this type of’jacket’ will appreciate the discomfort it brings.

My muscles were never strong enough to allow me to take a job away from home, but I managed to do many household tasks including cooking. For a time I ran my own dressmaking business. For some years I drove a Ministry of Health small car. Eventually the Ministry decided my arms were no longer strong enough to control it. That was when I began to realise they were right and I now know that PPS started at that time and has continued ever since. This would be about twenty five years ago. My legs also began to deteriorate. For some years I persevered until I had to use a walking stick in the house and later a walking frame with three wheels. Six years ago I had to resort to an indoor electric wheelchair. Needless to say, the struggle to keep on my feet had been so great that it came as a relief to give up walking altogether.

Although I now have to rely on carers and friends to do so much for me, my life is by no means all gloom. There are many things of interest to be seen from my windows, watching the birds and the flowers in my garden, and with plenty of things that are manageable sitting down.

As a point of interest, I would like to know whether any other polio sufferers were patients at the National Hospital, particularly during the nineteen twenties. If so, I wonder whether they have thought of comparison with the present day hospitals. My memories are of bare wooden floors, which had to be scrubbed weekly, and a daily menu of bread and margarine for breakfast and tea, washed down with a thick mug of tea, lunch of minced beef, watery cabbage end potatoes, followed by milk pudding, to say nothing of the strict discipline that was imposed, especially when matron and doctors were due on their rounds. Visiting was Thursday and Sunday afternoons for two hours only. After a time one became used to the routine and made the best of it.

Kathleen B. – Lincolnshire.

If you would like to write to me, please do so care of the LincsPPN address and I will enjoy getting your letters and replying in person.

Other Polio Survivors’ memories

On the theme of “memories” I wonder how many of us have lifelong “hilarious” memories of the stay in a hospital polio ward, in contrast to the predominantly scary memories. I just turned 4 when I got polio in July 1943 in Seattle. It was in a polio ward at “Children’s Orthopedic Hospital” (now renamed “Children’s Hospital and Medical Center”) in Seattle, Washington, USA. Seattle is my birthplace. One day we were all brought spaghetti for dinner; one of us started throwing the spaghetti (not me, of course :-)) and all at once we were all throwing spaghetti at each other. It is one of my most vivid of all my childhood memories. I STILL see the big, big mess and the faces of the angry nurses! (Smiley face 🙂 if you look at it sideways)

Jack Schwartz Jack_Schwartz@ITLNET.NET P.O. Box 1971 Weatherford, Oklahoma 73096-1971

Hi Jack, Different class 1953 but same thread. The food was so cold by the time it was brought to our out building, that it was nearly frozen. One day I decided, I had 3 room mates younger, I was 17, that we should butter the pancakes and toss then on the walls and ceiling. We did and for a brief moment in our despair there was a roar of laughter as they flopped to the floor, and when the nurse came she didn’t have a clue as to how they got all over the floor!

PAT Dog lover from N.J. now living in Tampa Bay area of Fla.

Wanting to pee and being told to wait. Oh I know what that was like. I was not embarrassed but couldn’t get anyone to bring me the bed pan so I peed in the empty milk bottle and dumped it out the window that my bed was by – no easy task – the milk bottle opening was not that big and trying to sit on it was a feat in itself. If you could have seen me it would have been even funnier. A little 6 year old trying to balance on a milk bottle to pee. But you know what, I didn’t spill a drop – G – (Grin) I think one reason we polio’s are so resourceful is that we have had to improvise so many times in our lives that we became creative. When in need of an answer or solution to a problem my family always says “ask Nana – she will know”.

Betty <Bettylive@aol.com>

When I was 15 I had bilateral knee surgeries and 2 stages of spinal fusions done. I wound up in this cast that was like armour (from the neck all the down to the toes). At night, during the nurses break, the kids that could walk would sneak down the boys end and pass notes. The kids that couldn’t get

out of bed would get their cigarettes out and smoke and if a nurse returned sooner than she was supposed to cigarette butts got stuck down bed posts. It’s incredible no bed ever wound up leaking the smoke! We certainly were never bored.

Erika <EINK@AOL.COM>

It’s not what’s being said though, it’s the memories that are being stirred up inside. I was three and a half in 1949 when polio reared its ugly head in my back yard. I don’t remember my spinal tap but other memories haunt me. I remember not being able to move and thinking that it was the hot, wet wool that was holding me down. I later worked in a hospital as a radiographer and one day (I was about 30 years old) during a snow storm I had to do a chest x-ray on a sweet little 3 year old, wrapped in the cloying jolter of memories – wet wool. As she screamed as I reached to take her from her mother’s arms, I became weak in the knees and had to leave the room and have someone else complete the exam for me. I sat myself down on a bench in the hall, covered with sweat and shaking as I remembered lying in a white crib, draped in wet wool – the crib stood next to a window and I saw my mother and father outside of the window – my mother stood to the side of the window where I could barely see her and I saw that she was crying and I remembered crying myself and calling to them and wondering why they would not come into the room and hold me, cuddle me, make me feel all better. Instead I thought I must have done something very bad, very bad. Why would they ever leave me alone with all of these strangers that did all these terrible, hurting things to me. Ah, the tempests that were unleashed by that little three year old and her winter’s wet wool. I remember the ache of being homesick and I don’t think I have ever experienced such an intense emotional pain again – I think I built up walls that helped me not to feel many things with the intensity that they, perhaps, deserve. My Raggedy Andy came to the hospital and never came home. I think we all went into the hospital with much that we never brought home – our sense of innocence for one. We all seemed to have come home with something extra as well, a spirit that we lived with and that touched the lives of the many that came in contact with us during our lives. The fight that enabled many of us to spit in polio’s face and work until we could get just a little stronger – that fight will always sustain us Enough! …….but I’ll be back!

Pat from NH

Robert & Patricia Saisi <saisi@SRNET.COM>

Hi! My name is Lillie Jennings. I am 55 years old come Tuesday. I am married 25.5 years to a good man who doesn’t quite know how to deal with all that’s happening with my body as a result of PPS. I was pretty strong for most of our marriage but now I can’t do much of anything if it involves walking any distance, standing any length of time, or lifting much weight. He does about everything in the house now but you know what I hate the most is not being able to go shopping by myself.

I had bulbar polio at age 14; was in hospital in Vanderbilt University Hosp. in Nashville, Tennessee for 15 months; in iron lung for 2 months; missed 3 years of high school but did finish. For almost 30 years I enjoyed almost a normal life and then out of the blue I began to have back aches and weakness. It’s been downhill from there. I fought it as long as I could and then started having a pinched nerve and severe coldness in my lower extremities. When the pain got too bad I had to do something. My regular Dr. treated me for sciatica to no avail. I just recently saw an orthopedic (hope I spelled that right) Dr. and he sent me to a neurosurgeon yesterday and I am going to have a series of steroid shots in my lower back done at a pain management clinic but the neurosurgeon said he doesn’t think it will do much good. I’ll try anything, tho, just on the off chance that it might work. He also said that he would not push for surgery (forgot to mention that have a herniated disc that is aggravating my problem and I have osteoarthritis in my spine) but there again the surgery probably wouldn’t alleviate the pain so why cut till they have to? I have a follow-up appt. with him in 3 months and he is going to write a recommendation for a scooter for me and I will once again be mobile on my own.

I was so surprised to find him knowledgeable about PPS, and he was young. Even the older Drs. freely admit they don’t know anything about polio let alone PPS. I am beginning to experience

increasing weakness in my lungs and constant hoarseness. I am not complaining tho because so many of my fellow patients in the hospital died or had to be institutionalized because either the parents did not want or could not care for them. I had great parents who cared for me and encouraged me in everything I tried. I have a 33 year old son and am very blessed. I am a Christian and I teach Sunday school. My church family is very supportive. I love to talk (bet you would have never have guessed that on your own! LOL (Laughing out Loud) If anyone would like to write who is not on the internet, then send it to Hilary and she can send it on to me. I would love to hear from someone in England.

Lillie Jennings, Fayetteville, North Carolina, USA.

Those who do not share our conflict

In many ways we are similar to warriors who fought (and are fighting again ) in a war to conquer the enemy, the polio Dragon. As Churchill once said in a famous speech, ‘we must never surrender’. Since we know, that this enemy cannot be defeated, at best we can keep it at arm’s length; we must be relentless and vigilant to watch its every move, and to ensure we take steps to curtail or remove any opportunity to allow it to advance or close in and destroy the remains of our ravaged systems. Those who do not share our conflict, have no idea of the toll in pain and suffering we have endured in this battle against the dragon. Individually, we could not stand a chance. But united together with our global allies we are a force to be reckoned with. We are fighting on two fronts. The most immediate one being keeping the dragon on the other side of the wall, and the other front we fight is convincing outsiders, that the dragon is not a myth. Let not the outsiders turn us from the warriors we are into feeble worriers.

Patrick Ross <pross@npiec.on.ca> Canada A family story I love:

Great Great Grandmother from Georgia saddled a horse and rode 12 miles to see a Doctor. She’d never seen one. She rode back disappointed and reported “it was only a man.”

Richard in Florida

Member from Scotland writing a book asks:

I am a polio survivor and a traditional acupuncturist and am writing a book on practical strategies for coping with PPS. I would like to include case histories of those experiencing PPS and would be most grateful to any readers who want to write to me with an account of how PPS has changed their lives. I would also like to know if readers with PPS feel that a type A stressful lifestyle helped contribute to their symptoms. Please email:

Vicki McKenna <Steve@thoughtware.demon.co.uk> or phone +44 (0)1414236249. Confidentiality assured.

Maurice Rampley Maurice_Rampley@msn.com is writing a fiction book about polio and would like to hear from people their thoughts, recollections and experiences of pregnancy, childbirth, parenting, treatment, clinic visits and schooling. 7 Cedars Way, Linslade, Leighton Buzzard, Bedfordshire, LU7 7PD.

POLIO SURVIVORS COMMUNICATING AROUND THE WORLD

Those of you without Internet access must wonder how we are able to include so many bits from other Polio Survivors around the World. There are Email Lists and Newsgroups for nearly every subject you can think of on the Internet. Lists work by subscribers sending in their message to a central point from where the messages are redistributed via email to all the subscribers for that particular list. Newsgroups work in a slightly different way but the end result is the same. If you want to answer you can reply to a subscriber privately by emailing them directly or you can reply via the mailing list. It is the latter approach that effects ‘public’ discussion and debate between the list subscribers, each one being given the opportunity to add their comments to yours. A great deal of support is given. It’s wonderful to be able to write about your problems and know that those reading the messages understand what you are going through.

The St. Johns University Polio list, one of several polio related mailing lists, is a private subscription based forum. Prvate in the sense that subscription requests have to be approved by the List owners. Although it is not a moderated list where every message is read by a human list moderator before redistribution, subscription to the list is conditional on accepting and working within a set of guidelines provided at the time of subscription. The intent of the list is to “Serve two purposes: To supply information, and to provide support and friendship in an informal and friendly environment.”

To subscribe send an e-mail to listserv@maelstrom.stjohns.edu with a blank subject line and sub Polio (yourfirstname yourlastname) in the body of the message. There are other lists, newsgroups, and all the information on how to access ail this can be found on our Web Site at http://www.zynet.co.uk/ott/polio/lincolnshire/directory/forums.html.

There are also applications that enable you to hold conversations in real time by typing messages at the keyboard which appear on the other parties screen. They may be an individual or a number of people at different locations. Many of these applications offer additional facilities such as whiteboards, i.e. areas of the screen where you can write information for all the participants to see, much as you would at a meeting, conference or tutorial. If your computer has sound capabilities, which are more or less standard on today’s machines, you can also hold voice conversations over the Internet.

Hilary Hallam Chris Salter

Seppo Utriainen <Seppo.Utriainen@prodycon.fi> from Finland Polio Association wrote..

This is the best time of my life, when I have the opportunity to communicate with all you polio’s and PPS’s in the Western Hemisphere.

Patrick Ross <pross@npiec.on.ca> from Canada replied….

Seppo you are so right…This is a communications revolution that we are in the midst, and it comes at a time when our ability to get around physically is being restricted by P.P.S. So, it makes it all the sweeter for us, and for me too, and I’m sure for most of us hit with P.P.S. This is the best of times to have this ability to communicate with an almost telepathic capability here on the NET. There you are in Finland, many thousands of miles away, and yet we can know each other’s feelings and thoughts. It is somewhat ironic, that at a time when our body’s communications systems is rapidly breaking down, we are compensated by a rapidly growing global communications network. Let us together, celebrate this blessing of new technology, and embrace it, for it will make our world closer, and allow us to share so much.

Travel Agent stories…I got a call from a man who asked, “is it possible to see England from Canada?” I said, “No.” He said “but they look so close on the map.A nice lady just called. She needed to know how it was possible that her flight from Detroit left at 8:20am and got into Chicago at 8:33am. I tried to explain that Michigan was an hour ahead of Illinois, but she could not understand the concept of time zones. Finally I told her the plane went very fast, and she bought that!

STRANGE OLD LADY

A very weird thing has happened. A strange old lady has moved in to my house. I have no idea who she is, where she came from, or how she got in. I certainly didn’t invite her. All I know is that one day she wasn’t there, and the next day she was.

She’s very clever. She manages to keep out of sight for the most part; but whenever I pass a mirror, I catch a glimpse of her there; and when I look into a mirror directly to check my appearance, suddenly she’s hogging the whole thing, completely obliterating my gorgeous face and body. It’s very disconcerting. I’ve tried screaming at her to leave but she just screams back, grimacing horribly. She’s really rather frightening.

If she’s going to hang around, the least she could do is offer to pay rent. But no. Every once in a while I do find a couple of dollar bills on the kitchen counter, or some loose change on my bureau or on the floor, but that certainly isn’t enough.

In fact, though I don’t like to jump to conclusions, I think she steals money from me regularly. I go to the ATM and withdraw a hundred dollars, and a few days later, it’s gone. I certainly don’t go through it fast, so I can only conclude that the old lady pilfers it. You’d think she’d spend some of it on wrinkle cream. God knows, she needs it.

And, the money isn’t the only thing she’s taking. Food seems to disappear at an alarming rate. Especially the good stuff – ice cream, cookies, candy – I just can’t keep them in the house. She really has a sweet tooth. She should watch it; she’s really putting on the pounds. I think she realizes that, and to make herself feel better, I know she is tampering with my scale so I’ll think that I’m gaining weight, too.

For an old lady, she’s really quite childish. She also gets into my closets when I’m not home and alters all my clothes. They’re getting tighter every day. Another thing: I wish she’d stop messing with my files and the papers on my desk. I can’t find a thing anymore. This is particularly hard to deal with because I’m extremely neat and organized; but she manages to jumble everything up so nothing is where it’s supposed to be. Furthermore, when I program my VCR to tape something important, she fiddles with it after I leave the room so it records the wrong channel or shuts off completely.

She finds innumerable, imaginative ways to irritate me. She gets to my newspapers, magazines and mail before me – and blurs all the print; and she’s done something sinister with the volume controls on my TV, radio, and phone. Now all I hear are mumbles and whispers. She’s also made my stairs steeper, my vacuum cleaner heavier, all my knobs and faucets hard to turn and my bed higher and a real challenge to climb into and out of.

Furthermore, she gets to my groceries as soon as I shelve them and applies super glue to the tops of every jar and bottle so they’re just about impossible to open. Is this any way to repay my hospitality? I don’t even get any respite at night. More than once her snoring has awakened me. I don’t know why she can’t do something about that. It’s very unattractive.

As if all this isn’t bad enough, she is no longer confining her malevolence to the house. She’s now found a way to sneak into my car with me and follow me wherever I go. I see her reflection in store windows as I pass, and she’s taken all the fun out of clothes shopping because her penchant for monopolizing mirrors has extended to dressing rooms. When I try something on, she dons an identical outfit – which looks ridiculous on her and then stands directly in front of me so I can’t see how great it looks on me.

I thought she couldn’t get any meaner than that, but yesterday she proved me wrong. She had the nerve to come with me when I went to have some passport pictures taken, and she actually stepped in front of the camera just as the shutter clicked. Disaster! I have never seen such a terrible picture. How can I go abroad now? No customs official is ever going to believe that crone scowling from my passport is me.

She’s walking on very thin ice. If she keeps this up, I swear, I’ll put her in a home. On second thought, I shouldn’t be too hasty. First, I think I’ll check with the IRS and see if I can claim her as a dependent.

Rev. Karen Utz. Pennsylvania, USA. “popette” <popette@client.alltel.net>

PPS DictionaryVent – Extra set of lungs that can be used at night so that you can sleep and your breathing muscles can take a nap too.

Lincolnshire Post-Polio Library

Articles added since last newsletter with grateful thanks to the authors G – Grimby, MD.

Title: Endurance Training Effect on Individuals With Postpoliomyelitis

Author(s): Brian Ernstoff, MD, Hakon Wetterqvist, MD, PhD, Henry Kvist, MD, PhD, Gunnar Grimby, MD, PhD

Original Publication: Arch Phys Med Rehabil 1996;77:843-8. Abstract/Extract:

Objective: To determine the effects of an endurance training program on the exercise capacity and muscle structure and function in individuals with postpolio syndrome.

Design: Preexercise and postexercise testing was performed with muscle strength evaluations using isokinetic testing as well as hand-held Myometer. Muscle fatigue was determined by use of isokinetic testing, and endurance was determined by exercise testing. Enzymatic evaluation was performed with muscle biopsies taken at the same site; preexercise and postexercise muscle cross-sectional area was measured by computed tomography. Disability

and psychosocial evaluation was performed by a Functional Status Questionnaire.

Title: Muscle Function, Muscle Structure, and Electrophysiology in a Dynamic Perspective in Late Polio

Author(s): Gunnar Grimby, MD, PhD, Erik Stålberg, MD.

Abstract/Extract: The muscular impairment in patients with a history of polio varies from none to severe. The relationship between the degree of initial involvement and the effect of various compensatory mechanisms determines the clinical picture, which changes dynamically. Early and late recovery after poliomyelitis depend on a number of factors. Clinical improvement that appears within a few weeks after the acute phase is probably due to recovery in the excitability of functional, but not degenerated, motor neurons. Degeneration of neurons, causing peripheral denervation, is compensated by collateral sprouting, i.e., by nerve twigs branching off from surviving motor units overlapping with the denervated ones. This is most likely the main factor explaining recovery within the first 6-12 months. Another late compensatory process is the increase in size of the muscle fibers. As a result of these processes, normal muscle strength and presumably normal muscle volume can be seen despite a calculated loss exceeding 50% of the number of motor neurons.

Dr. Henry Writes…

Dr. Henry writes about Falling

Dr. Henry writes about Debilitating Fatigue

Dr. Henry writes about Massive Denial

Dr. Henry writes about Normalcy(In this newsletter)

Dr. Henry writes about the Time and Contrast

Dr. Henry writes about The Virtue of Self Denial

West Park Post-Polio Clinic – Toronto

Title: Physiotherapy Management of The Late Effects Of Polio Author(s): Christine Uriadka

Original Publication: Revised transcript of presentation given by the author in Winnipeg, Canada April, 1997

Abstract/Extract: I am a physiotherapist currently working in the Post-Polio Clinic at West Park Hospital, a rehabilitation and specialized continuing care

hospital in Toronto, Ontario, Canada. In my discussion, I will touch upon several broad areas related to post-polio issues. I’ll begin by discussing why it is essential for clinicians to be aware of how to manage the late effects of polio. I will go on to provide a general profile of the physical symptoms and functional difficulties that arise in the post-polio population, and talk about how these new concerns develop. This description would not be complete without addressing the emotional coping issues and lifestyle adaptations that accompany the physical changes. I would then like to discuss a number of symptom management approaches, from the physiotherapy perspective. After this, I will provide an overview of the structure of the PostPolio Clinic at West Park Hospital.

• Why do Clinicians Need to Know about the Late Effects of Polio?

• The Late Effects of Polio

• Development of Post-Polio Symptoms

• Functional Changes

• Impact on Accustomed Roles

• Coping with Lifestyle Modifications

• Emotional Impact

• Management of Post-Polio Symptoms

• Exercise Guidelines for the Post-Polio Population

• Prescription of Cardiovascular Exercise

• Benefits of Aquatic Exercise

• Considerations regarding Aquatic Exercise

• Prescription of Strengthening Exercises

• Prescription of Stretching Exercises

• Energy Conservation

• Postural Correction

• Strategies to Correct Postural Alignment

• Adaptive Equipment: Benefits of Orthotic Prescription

• Factors Affecting Bracing Requirements

• Purposes of Ambulation Aid

• Considerations for Ambulation Aid Prescription

• Pain Management Strategies

• Client Education

• Post-Polio Clinic Role and Structure

• Client Care Process

• Access to Clinicians at West Park Hospital

• Outcomes

• Post-Polio Educational Kit

• Suggestions and Approaches for Health Care Professionals

Copies available from LincsPPN Office at £1.00

Article from our Online Library

The following article is reprinted in full in the edition of this newsletter distributed via the postal services. If you are printing this web edition for further distribution, please print the library article as well and attach it to the newsletter.

Title: A Look At Feet (for people with the late effects of polio)

Author(s): Beth Rose, B.A., B.Sc.(O.T.). Post Polio Clinic, West Park Hospital, Toronto, Ontario.

Abstract/Extract: Many people with the late effects of polio demonstrate foot problems. Some are mild problems, while some are more severe. Harley said

that Polio may have affected some, but not all, of the muscles of the lower extremities. This partial paralysis can therefore create a muscular imbalance between opposing muscle groups of the foot and ankle, often leading to a Pes Planus (flat foot), Pes Cavus (high arched foot), abnormal pronation, abnormal supination, and gait abnormalities. Various other problems can then ensue, such as calluses, corns, Hammer toes, or Hallux Valgus… Proper fitting, supportive footwear and custom-made foot orthoses can alleviate many of the problems seen with the feet, such as calluses, corns, plantar fasciitis, metatarsal

problems and bunions.

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177 Articles for publication by July 22nd please – Publication date July 31st 1998 MEMBERSHIP for this financial year is £10.00 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

info@lincolnshirepostpolio.org.uk

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin9811.html> Last modification: 5th February 2010.

Linc Pin Volume 1 Issue 11 Read More »

Linc Pin Volume 1 Issue 10

Volume 1 – Issue No. 10 – March 1998

WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/ Registered Charity No. 1064177

CONTENTS

This Issue is dedicated to the memory of Wendy Roberts (nee Skelcher), who died at the age of 63 in Woonona, New South Wales, 2517, Australia. She contacted Polio at the age of 13, was nursed at Coleshill Hospital, Birmingham, a great lady, with fantastic strength, so brave, and a great example to us all. There is a great need for more specialist support. Your forever friend, Jean. MCSP SRP

CONTENTS

This issue includes articles from our online library (our newsletter is distributed by post to many subscribers who do not have Internet access). Rather than duplicate the article in this online edition of the newsletter, I have instead just included a link to the library article. I have assumed that those of you who already have the article would prefer not to have to print it again if you wish to print this newsletter for your own use. However, if you are printing copies for further distribution we would ask you to print copies of the article as well.

Editorial by Hilary Hallam

My Visits to Papworth, and My Infernal Machine Christine Ayre – Lincolnshire.

Using Your Body Efficiently Grace R. Young, MA, OTR

Creating A User-Friendly Kitchen Grace R. Young, MA, OTR

Pain in Post-Polio Syndrome C. Vandenakker, MD

Post-Polio Research: The State of the Art, 1998 Dr. Richard Louis Bruno

Dr. Henry writes about Polio Encelphalitis

Dr. Henry writes more on Post Polio Brain Fatigue

The Transforming Power Of Illness by Vicki McKenna, BA Lic Ace MBAcC LincsPPN Member in Glasgow

Changing Lanes by Michael Creurer

“Today I Smiled”, “How lucky I am” and “How to Lie to the Bathroom Scales”.

Thoughts on: In the Shadow of Polio : a Personal and Social History by Kathryn Black

Clarissa Lassaline, Librarian, OMOD, Post Polio Library Sudbury Chapter, Ontario, Canada

Healing the Blues by Dorothea Nudelman and David Willingham, MSW

Post Polio Syndrome by Lauro Halstead, MD April 1998 – 9.4.98 Scientific American

Hypertension in PPS Thyagarajan Subramanian, MD Assistant Professor of Neurology Emory

University, USA.

Polio Survivors Jazz up your Canes, Scooters, and Wheelchairs

Our Contact Information

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

Lincolnshire Post-Polio Network

Editorial by Hilary Hallam

We said that 1998 was the year of the Positive Polio Survivor… Some of our members now have a diagnosis after many years of the rounds of hospital departments. Dr. Whitely will accept referrals from GP’s to assess Polio Survivors. There are no tests to say whether you have PPS or not, diagnosis is by exclusion of other conditions and with a past history of polio (records, visible disability, or tests that show polio damage), a stable functioning period and new symptoms.

Dr. Alan M. Whiteley, Consultant Neurologist, Neuroscience’s Directorate – Queens Medical Centre, University Hospital, Nottingham, NG7 2UH.

Tel. 0115 924 9924 Fax. 0115 970 9493

We recommend that you start a file for yourself on your life. Doctors are busy people and any way we can help them by providing information in an easy to read way will we know be appreciated. We also know that writing your polio story can help you adjust and this has helped many of us. Not all of us remember it all, but write down what you can, or what you have been told. This might be an emotional experience for you and for your family. Your parents may be blaming themselves for your catching polio and they, and your siblings, partner and children may be finding your noticeable difficulties as difficult to come to terms with as you are yourself.

We suggest that you have two copies – one a comprehensive document, and another a basic facts only version that a medical professional can scan down, make notes on and keep on your file.

We suggest separate pages on your life, pre-polio, with polio and up to best recovery, your life, work and hobbies since polio, and your symptoms now and when they started and how they affect your life. You can then Photostat this and have copies available for the medical professionals that you come into contact with.

Membership Fees, Stories Wanted, and Help Needed.

Our membership is growing throughout the Country. We welcome all the new members and ask that you write and tell us your story, tell us your problems, hints and tips that might help others. We would remind you that membership fees are now due for this financial year – £10 -rejoin and receive free copy of ‘Changing Lanes’ booklet by Michael Creurer. Membership Form enclosed [Readers of this Web version please email info@lincolnshirepostpolio.org.uk for more information].

We are also looking for more people to help us with our work. You do not have to live in Lincoln or Lincolnshire. Do you have, secretarial, accounting, librarian, medical, journalist, fundraising, etc. skills, the list is endless, then we would like to hear from you. We have a virtual organisation in the planning stage, and there are many tasks to complete. All offers of help will be welcome, however small, and it does not have to be on a regular basis.

Sponsorship, Grants, Donations.

We would like to thank all those who have supported our work. Donations from members in Hong Kong, America and Britain. Computer and Software for the WebSite from three firms in Florida. Sponsorship from Diamond Cable who have donated the Rental Costs of our new Business Line. We have plans for improving on the service we provide as soon as we have the funds and would be pleased to hear from anyone who can help us. We have itemised our needs and all donations whether large or small are part of the end result. Maybe you could organise a local event to raise funds. Perhaps you have a hobby and could donate something you have made as a raffle prize. We will also accept any Stores vouchers etc, we can turn these into talking points, air miles for conferences, raffle prizes etc. Stamps are especially welcome. All ideas will be welcomed.

We offer 20 page Bi-monthly newsletters, 2 leaflets, Copies of medical articles from our WebSite – our most cost effective way of publishing information – telephone, letter, fax and email support. We can ask the worlds experts for help via the Internet. Another aim is to see all Polio Survivors being assessed, advised and treated by Post Polio Clinics in the UK.

My Visits to Papworth, and My Infernal Machine

Just over a year ago I paid my first visit to Papworth Hospital, only for an overnight stay to have a sleep study plus lung function tests, x-rays blood tests etc. At that time I was sure PPS had zapped me to such an extent that I would be going home with a respirator, but, it was not to be. I passed all the tests well and was sent home and told to return in a years time.

The year passed, and I returned to Papworth last November for another overnight stay, but, this time the tests were not so good and I was told I would need a respirator for when I was asleep. I was horrified at the time and imagined life as I had known it was over and that I would lead a very difficult and uncomfortable life with a harness on my head. Just imagining trying to sleep with it on, and the noise, nobody I thought could sleep with a noisy machine like that on the bedside table. However, how wrong I was, three months on and I can’t imagine being without my wonderful respirator. Life is much better now, gone are the day’s when I couldn’t stay awake all day, and gone are the nights when I was waking every hour and getting up in the morning ‘feeling and looking’

like a Zombie.

I won’t pretend that everything is always a bed of roses now but, I don’t feel as if PPS has got the better of me, I now have a powerful weapon with which to fight the enemy.

Some of you reading this will know of the problems encountered with a respirator but, not insurmountable problems for the like of us who are the salt of the Earth and can do anything. For those of you who are threatened with a respirator I will say go for it and don’t worry about the little problems, these are things everyone suffers so you are not unique. I think the biggest hurdle to overcome is accepting the mask over the nose, it makes one feel rather claustrophobic at first, but, after a few tries it becomes easier and after a few nights sleep life seems a lot rosier. Another problem is the mask itself not the most comfortable thing and can cause a very sore bridge of the nose, and it does take a bit longer to become accustomed to that, but it becomes easier with time. The noise I was so worried about is easy to bear and is quite soothing, I am unable to think for very long when I am using the machine as I tend to drop off to sleep, so thinking is best done in the daytime.

My biggest worry about the machine was how “Ben” my Boxer Dog would react. The first time he saw me wearing the respirator he climbed on the bed and peered into my eyes with a puzzled expression. Now he just accepts it as another of His Mums foibles. He’s quite convinced all humans are mad.

The respirator machine itself can be a bit of a pest, the pipes tend to come off just as one is dropping off to sleep. I find the best way to deal with this is to swear at it and threaten to throw it out of the window, or promise to place it on the road in front of the next passing steam roller. This usually does the trick and the infernal machine pulls itself together and the rest of the night passes uneventfully Just be aware of it crouching on the bedside waiting for the next night to try to turn you into a frenzied, swearing, red faced, demented, being.

A word or two now about Papworth Hospital This is the most comfortable, friendly, and laid back Hospital I have ever been in, (and I’ve been in quite a few). It’s just a case of do your own thing most of the time, no set time for getting up, no regimentation, and a thing one may think of as a big problem is soon cut down to size by the staff. If you are visiting Papworth in the near future be warned, the food is not good, so take some eatables with you. Also go with the idea that you won’t find a parking space then if you do find one it will be an unexpected bonus.

Anyone reading this who is the proud possessor of one of these infernal machines, and may know a few tips on use etc, please write to me. I would be most grateful for any information, will answer all letters either through the Linc-PIN, or you can apply to Hilary for my address.

Christine Ayre – Lincolnshire.

FEET FIRST CHIROPODY In your own homeAlexander McLuckie M.S.S.Ch., M.B.Ch.A. Qualified Surgical ChiropodistArea from Lincoln to Nottingham 01522 576162Freephone 0800 074 0877

USING YOUR BODY EFFICIENTLY

Grace R. Young, MA, OTR <gryoung@.PACBELL.NET>

The basic principles of good body mechanics apply to disabled as well as non-disabled individuals. However, polio survivors have individual patterns of muscle weakness and unique ways of compensating, so there are no ‘cookbook’ rules that apply to everyone. Here are some general principles that apply to most of us.

GOOD POSTURE

• Good posture uses less energy than ‘slumping’ and helps prevent muscle tension, fatigue,

backaches and neck pain.

• Sitting or standing up straight balances your body on its own bony framework. The further

you move from this position, as when you droop or slouch, the more your muscles have to

work to counteract gravity.

SIT INSTEAD OF STAND WHEREVER POSSIBLE

• It takes approximately 25% more energy to perform an activity standing than sitting.

• Sitting decreases the demand on the cardio-vascular system and relieves the weight bearing

joints of the lower extremities.

• Sit during meal preparation, while you work on hobbies in the garage, when you shave,

apply make up or style your hair, or work in the garden.

• When sitting brings your work surface too high (like preparing meals at the kitchen counter

or doing hobbies on a workbench), a drafting chair with a pneumatic lift, a footrest and

adjustable backrest works well. The one drawback is that you have to raise the seat before

you sit down. Push the chair back into a corner while you get on it so it doesn’t roll out from

under you.

LIFTING AND UNLIFTING (SETTING THE LOAD DOWN)

• Incorrect movements squander energy and can cause back injuries. Before starting to lift,

assess the situation. How heavy is the load? Will you need to carry it? How far?

• Articles on body mechanics say to lift with the legs, not the back. Many of us can’t do that.

So if the load is on the floor, sit on a chair and push the load with your foot, crutch or cane

to estimate the weight. If it feels ok, get your chair close to it, lift it onto your lap, then place

it on a shelf, table or cart next to you. Do not stand up while you are holding the load.

• To lower loads that are above your shoulders, test the weight first by pushing up on it. Keep

the load close to your body while letting it slide down, then put onto a shelf, table or cart.

Do not lift heavy items over your head; ask for help. For lifting and unlifting, remember to:

Test the weight first

Keep it close to the body

Have a surface ready to receive the load.

USE MECHANICAL HELP FOR CARRYING

• Carrying objects changes your centre of gravity and can stress your arms and overuse your

leg muscles. Here are three inexpensive items which can lessen your energy output.

1. A kitchen utility cart on casters, available in most houseware departments. Just one

trip with the cart can transport dishes, silverware, food to the table and back again.

Use the cart to carry laundry or cleaning items. Push it along when you straighten the

house, for putting things in their proper place.

2. A collapsible grocery cart on wheels to keep in your car – use it when no one else is

available to bring in the bags.

3. A lightweight luggage cart is useful for many things besides travelling. Take it to the

mall (shops) to carry your purchases. Use it for transporting articles from room to room and between the house, car, or office. Keep the cart open and in a central location, ready to use at all times.

Grace Young WebSite

http://www.reocities.com/HotSprings/4713/

See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

Seen during a Conference:For anyone who has children and doesn’t know it, there is a Day Centre on the first floor.

CREATING A USER-FRIENDLY KITCHEN

Grace R. Young, MA, OTR <gryoung@.PACBELL.NET>

Preparing and cleaning up after meals takes a lot of time and energy and has to be done repeatedly. It really helps to organize your kitchen so it is user-friendly.

STORAGE

• Keep frequently used items stored at a height between the hips and the lips. This avoids

unnecessary bending or reaching.

• It seems like whatever you need is always on the bottom or at the back, so store dishes in

stacks of their own kind. Do not put small saucers on top of big ones, or small bowls inside

of larger bowls. Purchase vinyl-coated wire racks for stacking same-size dishes.

• Stack pots and skillets one layer deep, so you do not have to lift the top items to get at at the

bottom one. Mail order houses and kitchen specialty shops offer racks for either horizontal

or vertical storage of individual skillets or pans.

• If your pantry shelves are deep enough to hold more than one layer, make the second (and

third) layer the same as the first. That means you put a can of peaches behind another can of

peaches but not behind a can of tomatoes. This way you can see all your supplies at a glance

and won’t have to pull out objects to get what you want.

• Use Rubbermaid susans for storing condiments in your kitchen cupboards. I have a two shelf

lazy susan for small container items like spices and a one shelf lazy susan for taller items

like cooking spray, etc. Frequently used items are on the lowest shelf of the cupboard and lesser used items are up higher. A reacher comes in handy for the higher items.

• One and two level sliding racks, bins, baskets, and shelf trays make base cabinets usable for

cleaning supplies, food staples cookware, etc, and bring objects within easy reach.

• Have a handyman put your lower kitchen drawers on rollers.

• Utilize stacking storage bins on wheels for potatos, onions, etc.

• Wire shelf units can be attached to the backs of pantry doors to hold boxes, cans and bottles.

• An angled mirror installed against the wall in back of the stove allows you to see what is

cooking on the back burners while you are seated.

STREAMLINE YOUR WORK

• Store equipment close to the area of first use. For instance, saucepans are usually used first

at the sink because you put water in them before taking them to the stove.

• Do not put away the most frequently used pans, skillets or dishes. After each use, wash and

let pots dry on top of the stove and let the dishes drain in a rack.

• Use lightweight dishes such as Corelle. Stoneware is pretty but too heavy.

• Use non-stick skillets and pans.

• Take advantage of dishes that can he used for cooking, serving and storing (such as

Corningware). They cut down on many steps as well as dishwashing.

• An electric knife carves many things besides turkeys and roasts. Use it to slice hard cheese,

fruits and vegetables, etc. Keep the knife in a bracket on the wall so it is always ready to use.

• Use a mini food processor to prepare vegetables. Large food processors require too much

clean-up.

• Chop vegetables with a jar chopper which cuts with pressure from the palm.

• The one-handed cordless can opener by Black and Decker is very lightweight and requires

no pressure to operate once the cutter has been activated.

• Use a sharp linoleum knife to open cereal boxes. Hold it like a dagger with the blade

pointing down and your thumb at the top.

• Prepare double recipes and freeze half for use at another time.

Grace Young WebSite

http://www.reocities.com/HotSprings/4713/

See also the Lincolnshire Post-Polio Library catalogue entry for

Young, Grace R., MA, OTR

Rev. Waren J. Keating, Pastor of the First Presbyterian Church of Yuma, Arizona, says that the best prayer he ever heard was,’Lord please make me the kind of person my dog thinks I am.’

PAIN IN POST-POLIO SYNDROME

By C. Vandenakker, MD

A. CAUSES OF PAIN IN THE POLIO SURVIVOR

Causes of pain are numerous, but those specific to post-polio syndrome appear to be related to overuse of weak muscles along with abnormal joint and limb biomechanics and degenerative changes.

Pain syndromes can be classified into:

1. Post-polio muscle pain

This pain affects the muscles affected by polio. It is a deep or superficial aching pain, similar to the pain of acute polio. It is often associated with muscle cramps, twitching, or crawling feeling. It often occurs at night or the end of the day. It is exacerbated by physical activity stress, and cold.

2. Overuse pain

This includes injuries to soft tissues: muscle, tendons, bursa, and ligaments. Common examples are rotator cuff tendonitis, medial or lateral epicondylitis, trochanteric bursitis and myofascial pain. This would include all strains, sprains, or overuse of the ‘strong’ limb. Most of these occur due to poor body mechanics, abnormal positioning or changes in posture. Overuse symptoms are very common in the upper extremities of crutch/cane users.

3. Biomechanical pain

Change in normal body biomechanics as well as normal wear and tear on joints results in degenerative joint disease (arthritis), degenerative changes in the spine(disk degeneration and worsening of curvature of the spine), and nerve compression syndromes.

Changes in body mechanics due to the weakness from polio makes joints very susceptible to wear and tear or degeneration – both in the strong limbs where there is often increased weight bearing and in the weak limbs where prolonged strain on unstable joints, protected only by ligaments, results in stretching of ligaments and increasing deformity. Those who rely on wheelchairs or crutches often show the wear and tear in the joints of the upper extremities. The joint pain may or may not be associated with swelling. X-rays usually show extensive degenerative changes.

The nerve compression syndromes include carpal tunnel syndrome, ulnar neuropathy at the elbow or wrist, brachial plexopathy and cervical or lumbar radiculopathies. These syndromes occur when there is pressure on a nerve, either due to degenerative changes that result in bone spurs, or enlargement of tendons or ligaments due to over-stressing, disk herniations in the spine, or a combination of factors. Neuropathies can be very painful and are often characterized by burning, tingling, and sensory loss, as well as weakness.

4. Bone pain

Most often the cause of bone pain in a polio survivor is severe osteoporosis or fractures. Fractures may be due to trauma (most commonly falls) or simply collapse of bones or compression fractures due to severe osteoporosis.

B. EVALUATION OF PAIN

1. Evaluation starts with assessment of the pain.

Where is the pain? How would you describe it? How long has it hurt? Is it constant?

What seems to aggravate it? What alleviates it? Is it associated with other symptoms? How does it limit your activities?

Have you tried any treatments? What? Has it helped?

Pain drawing may be helpful!

2. Thorough medical assessment including history, physical exam, and appropriate dignostic

studies are used to identify the source. Studies that may be used include:

X-rays

Special imaging, i.e. CT scan, MRI, or bone scan Nerve conduction studies/EMG

C. MANAGEMENT OF PAIN

1. Basic principles:

Improve body mechanics

Correct or minimize postural and gait deviations mechanically Protect and support weak muscles and joints

Promote lifestyle modifications

Adjust work load on muscles and joints to match capacity Control inflammation and muscle spasm

2. Therapies utilized:

Modalities

Medications – most commonly non-steroidal anti-inflammatories or low dose antidepressants

Behavior modification – pacing

Bracing or assistive devices, positioning aids Spray and stretch or trigger point injections Joint injections

Surgical intervention

Weight loss SAFE exercise

3. Avoiding the ‘pain cycle’

Pain > inactivity > increased weakness and loss of flexibility > frustration and depression > overexertion > damage to relationships with friends and family

Learn to accept your condition Learn to relax

Let your feelings and needs to be known

Problem solve / find new ways of remaining involved and active in relationships

In essence, pain is part of the post-polio syndrome and we have to learn how to deal with it as effectively as possible. We need to review any recommendations and incorporate them into our own individual lifestyles.

Reprinted from The Florida East Coast Post-Polio Support Group Newsletter Volume 5 No. 4 January /February 1998.

Post-Polio Research: The State of the Art, 1998

NEW MOBILITY, April, 1998

Re-printed with permission from Dr. Richard Louis Bruno

1997 was a year of discovery for researchers studying post-polio sequelae (PPS) – the disabling fatigue, muscle weakness and pain experienced by 76 percent of polio survivors decades after the poliovirus has come and gone. Some of the new findings are disappointing, and others are even disturbing. But new understanding from this research will become the platform for future treatments, so there’s every reason for survivors to keep themselves well informed.

Brain Waves and Fatigue

During the past eight years, my team at the Post-Polio Institute at New Jersey’s Englewood Hospital and Medical Center has been studying the cause of post-polio fatigue, the most common and disabling PPS. Post-polio fatigue has been found to be associated with a severe inability to focus attention and a marked reduction in the brain-activating hormone, ACTH. Magnetic resonance imaging reveals damage to the brain-stem neurons responsible for activating the brain, damage also found during autopsies of polio survivors done 50 years ago.

A study to be published this spring in the Journal of Chronic Fatigue Syndrome describes our measurement of polio survivors’ attention, brain waves and the hormone prolactin. Prolactin increases in the blood when there is too little of the most important brain-activating neurochemical, dopamine. Our finding that polio survivors with the worst fatigue had the highest prolactin levels and the slowest brain waves suggests that survivors do not have enough dopamine to fully activate their brains. A dopamine shortage may explain their difficulty focusing attention, and other symptoms of post-polio “brain fatigue.” This conclusion is supported by our 1996 finding that bromocriptine – a drug that substitutes for dopamine in the brain – reduces the symptoms of postpolio brain fatigue in survivors who do not respond to the treatments of choice for fatigue reducing physical and emotional stress, using assistive devices, conserving energy, resting and pacing activities.

Two Drugs Flunk the Test

Last fall, the results of two multi-center drug studies were announced. Robert Miller, of San Francisco’s Columbia Pacific Medical Center, led a study of recombinant insulin-like growth factor- 1 (IGF-1) in polio survivors. Why study IGF-1? Because a 1995 study at the Milwaukee V.A. Medical Center had found that male polio survivors with “difficulties in the activities of daily living” had abnormally low blood levels of IGF-1. IGF-1 normally increases muscle size, stimulates extra neuronal growth (a process called sprouting) and slows the progression of amyotrophic lateral sclerosis. So an IGF-1 “menopause” in polio survivors was considered a possible cause of postpolio muscle weakness, and the replacement of IGF-1 was thought to be a potential treatment. Miller and his colleagues measured several variables before and after three months of twice-daily under-the-skin injections of either IGF-1 or a placebo: subjective fatigue, ability to function, the force of a maximal muscle contraction after a fatiguing exercise, and the amount of muscle strength recovered 15 minutes after the exercise. Unfortunately, the study found that IGF-1 had no effect on subjective fatigue, functional ability or muscle strength, although muscle force after the 15 minute rest was 13 percent higher. The improved muscle force “was statistically significant for those who received IGF-1,” says Miller. But, he adds, “We are not sure how clinically meaningful this would be nor do we understand the mechanism of this finding.”

Another multi-center, placebo-controlled study was headed by Neil Cashman, now at the University of Toronto. Cashman and his colleagues gave polio survivors a placebo or pyridostigmine (Mestinon), a drug that prolongs the action of acetylcholine, the chemical released by motor nerves to make muscles contract. In an earlier study in which subjects knew they were taking the drug, pyridostigmine was found to decrease survivors’ “general fatigue” by 56 percent. But the controlled study of pyridostigmine was disappointing. After six months, says researcher Daria Trojan, there was “no significant impact on quality of life, fatigue or muscle strength.”

IGF-1 and pyridostigmine join amantadine, an anti-viral drug, and prednisone, a powerful steroid, as once-promising drugs that have not been found to reduce post-polio muscle weakness or fatigue in placebo-controlled studies.

Magnets for Pain?

If current drugs are not effective treatments for PPS, might less conventional approaches be helpful? Carlos Valbona, of the Baylor College of Medicine, thought so. He and his colleagues tested the effects of magnets on pain in polio survivors. Valbona identified subjects’ “trigger” points, places on the body that hurt when pressed. He then caused pain “by firm application of a blunt object approximately one centimeter in diameter,” asking subjects to rate the pain on a scale from zero to ten. On average, the pain was rated about a 9. Researchers then placed either a magnet or a non-magnetic pad, indistinguishable from the magnets, over the painful trigger point and waited. After 45 minutes, the blunt object was again pressed into the trigger point. Subjects treated with a magnet rated their pain a 4 on average after the second push. Those treated with the non-magnetic pads rated their pain an 8.

Valbona’s methods cannot be faulted. Double-blind, placebo-controlled studies like this one are the gold standard of research. Sadly, the media quickly reported that magnets are a “cure for post-polio pain.” Pushing a blunt object into a trigger point does not produce post-polio pain, but rather an experimentally-induced pain that is not at all typical of the chronic muscle and joint pain reported by about 75 percent of polio survivors. Without another study, it is not clear that magnets will decrease chronic pain in polio survivors.

It is also unclear why magnets would have any effect on even experimentally induced pain in polio survivors. Valbona implies that the pain-reducing effect of magnets in his study may be related to The Post-Polio Institute’s 1985 finding that polio survivors have double the pain sensitivity of those who have not had polio. This heightened pain sensitivity may be related to a 50-year-old finding that the poliovirus kills brain neurons that produce endorphins, the body’s own morphine.

But regardless of how magnets might have decreased pain in this study, polio survivors shouldn’t

think they can run themselves ragged, apply magnets to treat pain, and be just fine. Future studies may indeed show that magnets are helpful for pain. But pain in polio survivors means damage is being done to the body. Masking discomfort – with magnets or morphine – is not a cure for polio survivor’s pain.

The Damage Done

The most important and sobering finding of 1997 was a study by A.J. McComas of Canada’s McMaster University. McComas and his group tested the most widely accepted hypothesis for lateonset muscle weakness in polio survivors: that motor neurons are breaking down and sometimes dying as a result of the initial poliovirus damage and decades of overuse abuse.

McComas actually performed two studies. First, using a technique he developed and has used for 25 years, he counted the number of motor neurons in polio survivors. Muscles known to have been affected by the original polio were found to have lost 59 percent of their motor neurons. Sixty-five percent of muscles thought not to have been affected had lost 40 percent of their motor neurons. These percentages mirror precisely the findings of pathologist David Bodian, who 50 years ago showed that at least 60 percent of motor neurons had to be killed by the poliovirus for a muscle to show any weakness, and argued that there was no such thing as an “unaffected muscle” in someone who had had paralytic polio.

McComas’ second study was equally revealing but more disturbing. He counted motor neurons in 18 subjects, then followed them for two years. At follow-up, 78 percent of the subjects reported a decrease in muscle strength and had lost an average of 13.5 percent of their motor neurons, approximately twice the rate of loss expected in healthy subjects. Most alarming was the finding that the two survivors who reported the greatest decrease in strength had each lost 50 percent of their motor neurons during the two years. While these findings are frightening, they are also a guide to a rational treatment for PPS. “Our findings make clear that polio survivors should not be treated using electrical stimulation that causes muscle contraction, warns McComas, “nor should they engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking.”

Typically Type A

In a study presented last October, Dr. Susan Creange, a research fellow at the Post-Polio Institute, reported that polio survivors with blood sugar levels in the low normal range have as much difficulty focusing attention as do diabetics who have extremely low blood sugars from taking too much insulin. “Polio survivors,” Creange says, “often have a ‘Type A diet:’ drinking three cups of coffee for breakfast, not having lunch and eating cold pizza for dinner. When we put polio survivors on a hypoglycemia diet, that requires eating protein at breakfast and small, non-carbohydrate snacks throughout the day, they had a remarkable reduction in nearly all the symptoms of post-polio fatigue.

The question for Creange was not only why polio survivors appear to be hypoglycemic – which she thinks is related to polio survivors’ brain-activating neurons being metabolically damaged – but also why they often eat a “Type A diet” and have such difficulty taking care of themselves.

For a study published in 1997, Creange mailed anonymous surveys to all patients who had been evaluated by the Post-Polio Institute team. Patients were asked about their PPS symptoms and completed surveys that measured loneliness, self-concept and how Type A – hard-driving, pressured, time-conscious, perfectionistic and overachieving – they were. Patients were also asked how often they rested during the day, asked for help from others, and used braces, canes, crutches, wheelchairs or scooters.

“Patients with a high Type A score were less likely to take rest breaks, a cornerstone of the treatment of PPS,” says Creange. “Patients who used wheelchairs were more lonely and had a poorer self-concept, crutch users also had poorer self-concept, while those who asked co-workers

for help had a more positive self-concept.” Further, the most Type A patients were the loneliest; the lonelier they were, the poorer their self-concept.

“Polio survivors will not rest, use assistive devices or ask for help if they feel badly about themselves, says Creange. “Friends and family members must help polio survivors feel better about themselves if they are to slow down, accept lifestyle changes and use the new assistive devices needed to treat heir PPS.

Abuse: Then and Now

Another study presented last year also asked why polio survivors are so Type A and take such poor care of themselves. The 1995 International Survey, performed by Dr. Nancy Frick of Harvest Center in Hackensack, N.J., surveyed more than 1,700 polio survivors and nondisabled controls. Frick, a polio survivor herself, measured Type A behavior and sensitivity to criticism and failure, and asked whether polio survivors had been evaluated or treated for their PPS. The survey also asked about experiences surrounding the original polio, including hospitalization, surgeries and emotional and physical abuse by family members, peers and medical professionals. “As in our two previous postpolio surveys,” says Frick, “polio survivors were 21 percent more Type A and 15 percent more sensitive to criticism and failure as compared to nondisabled controls.” A more upsetting finding was that polio survivors reported 34 percent more emotional abuse and 94 percent more physical abuse than did controls. “All of the ‘extra’ abuse was related to polio survivors appearing obviously disabled, says Frick. Polio survivors who were abused were at least 15 percent more Type A and sensitive to criticism than those who were not abused.

“It is no mystery why polio survivors today refuse assistive devices that make them look more disabled,” says Frick. “Using crutches or a wheelchair feels like painting a bullseye on your chest above the words, ‘Abuse me, I’m disabled!'” Frick’s findings may also explain why polio survivors are so reticent about even being evaluated for PPS. “About 78 percent of polio survivors said they were not treated with concern by the medical staff when they had polio,” she says. Polio survivors who were treated well by medical personnel are significantly less Type A and less sensitive to criticism than those who were treated poorly. Those who were not treated well became more Type A and more sensitive to criticism and failure as adults. Frick’s research suggests that Type A behavior developed as a protection against criticism and failure, and that polio survivors who are most Type A today are most likely to refuse evaluation or treatment for their PPS. Frick concludes, “Type A polio survivors refuse to treat their PPS and use assistive devices as a protection from the kind of abuse they experienced as children.”

Treatment of Choice

Research during the past decade has shown that conservative treatments for PPS – reducing physical and emotional stress, using assistive devices, conserving energy, resting and pacing activities – are very effective. The problem is that polio survivors have such difficulty applying these simple measures. “The treatments for PPS may sound simple but they are not,” says Frick. “Polio survivors have to deal not only with their bodies giving out on them again, but also with their long-buried emotional pain.” And it is those painful experiences of the past, the fear of giving up “protective” Type A behavior, and a terror of looking disabled that stop polio survivors from treating their PPS. The most difficult aspect of treating PPS is not deciding whether a short or long-leg brace will be most helpful. The challenge is helping polio survivors face the pain of their abusive pasts and accept appearing more disabled now – by slowing down, asking for help and using new adaptive equipment – so they won’t become more disabled later in life.

Dr. Richard Louis Bruno is Director of the Post-Polio Institute at Englewood (New Jersey) Hospital and Medical Center and is Chairperson of the International Post-Polio Task Force. Papers describing the research performed at the Post-Polio institute can be found in the on-line PPS Library at http://members.aol.com/harvestctr/pps/polio.html

Dr. Bruno <PPSENG@AOL.COM>

See also the Lincolnshire Post-Polio Library catalogue entry for

Bruno, Richard L., Ph.D.

Articles from our Online Library

Title: Dr. Henry writes about Polio Encelphalitis Author(s): Henry Holland MD

Original Publication: SJU Polio mailing list.

Abstract/Extract: Many of the posters on this list have mentioned being in comas for a few days, having double vision, breathing and swallowing

difficulties, etc with the original infection. Most of us had headaches and tender necks (meningeal irritation) and these symptoms would be compatible with an encephalitis at the time of the original infection.

Title: Dr. Henry writes more on Post Polio Brain Fatigue Author(s): Henry Holland MD

Original Publication: Central Virginia (Richmond) PPS Support Group Newsletter.

Abstract/Extract: I have written in the past about post-polio brain fatigue.

This symptom complex that many of us experience involves a feeling of total body fatigue, difficulty remaining alert, word finding problems, concentration difficulties, and occasional forgetfulness. These problems are usually absent when we are well rested. In the November/December issue of the newsletter of the Florida East Coast Post-Polio Support Group, there is an article written by Donald Peck Leslie, MD, of the Shepherd Center, Inc. of Atlanta, Georgia entitled “POST- POLIO FATIGUE: WHAT IS IT? WHAT CAN WE DO ABOUT IT.” It is a lengthy article that summarizes the development of PPS and many of the theories regarding the causes of PPS. I was particular interested in some of the information relating to PPS brain fatigue and will attempt to relate it to you.

ROTARY DISABLED GAMES IN BARNSLEY SUNDAY 19TH APRIL 1998Free Transport 7am to 9pm from Lincoln.Snooker, Bowls, Boccia, Swimming, Archery, Table Tennis, Rifle Shooting, Darts, Weight Lifting, Wheelchair Dash and Wheelchair SlalomWant to enter .. Ring immediately please.

The Transforming Power Of Illness

by Vicki McKenna, BA Lic Ace MBAcC

<steve@thoughtware.demon.co.uk>

LincsPPN Member in Glasgow

Last year I was under a lot of stress with a major house/city move. I had been experiencing poor health for the past few years – aches and pains and gastric symptoms to name a few of the mysterious ailments that had entered my life.

I sipped foul tasting Chinese herbs, rested, meditated and experienced a taste of my own medicine by having acupuncture. I swallowed vast quantities of vitamins pills, thought positively, got in touch with my feelings and in short did all that I could to get well. Some months later – still unwell and by now chronically fatigued with accompanying symptoms of mental confusion, poor concentration, and memory problems, I was labelled an M.E. sufferer by my G.P.

It was then remembered having read something about post-polio syndrome in the past and started to research as much as I could about the subject. I had had polio as a baby and to this day use a full length caliper to get around. Like most polio survivors I ignored my disability and got on with my life. Now it seemed that polio was back to haunt me.

Elizabeth Kubhler-Ross writes about the first stage of bereavement being denial and I think this could be applied to the first stage of illness. Certainly for me denial was the immediate reaction to the realisation that I was chronically ill. I have experienced poor health in the past but sheer bloodymindedness has always seen me through and pushed me on. Suddenly these tactics did not work. My body now rebelled if I did too much with joint pains, headaches, and overwhelming fatigue. I was very frightened but battled on refusing to slow down and acknowledge these symptoms. Weeks of frustration followed as I realised that my luck had run out and this time I was not going to bounce back.

My life has dramatically altered during this time. I have had to cut back on work and play and it has not been easy to accept that this is how it needs to be. Slowly I am coming to a place of acceptance which I hope will strengthen my understanding of illness – my own and that of others who experience this crucible of ill health.

Although I have practised Chinese acupuncture for the past fifteen years, I am like most of us, a child of twentieth century western culture and have in the past been treated with allopathic, chemical medicine. Western medicine looks for the instant cure and seemingly works well with acute illnesses – for example bacterial infection is successfully treated with antibiotics. Many times I have longed for this kind of “quick fix” but sadly this approach is useless when it comes to long term, chronic illness. Western medicine is at a loss when faced with diseases such as M.E. and post polio syndrome and although there are treatments to help ease the symptoms – pain killers for the muscle aches and antidepressants for the accompanying mood swings, there is no instant cure.

The goal of Western medicine seems to be to blast disease out of existence and I think medics feel thwarted and embarrassed at their apparent “failure” when it comes to chronic illness. This repressive attitude towards sickness comes I believe from our modern culture which has no place for the weak or slow in the twentieth century scheme of things. Life in the present day is lived at a hectic pace and productivity is the great god to be worshipped. We have to be seen to be achieving at home, at school, at work, in all aspects of life until we reach the (often early!) grave.

Chemotherapy and radiotherapy can bomb and blitz cancer in the battle field of the sick body. The term “heroic” surgery is used to invoke the idea that we are valiantly striving against suffering and disease. Illness is seen as the enemy – a thief in the night coming to steal away our busy, productive lives. We put the chains on the door to protect ourselves by doubling our doses of vitamin C, exercising frantically and eating fibre, morning, noon and night. We suppress the first sign of a cold

with a dose of aspirin and carry on with a purposeful air. Illness is seen by society as a threat to productivity and a sick person is seen as one who is not able to contribute to the whole. The vulnerable pack of cards we call “society” is threatened by illness and fears it may tumble down. How many times have we experienced the G.P. hastily scrawl out a prescription so that we may return, post-haste, to work.

The Cartesian view of the universe – that mechanistic, scientific view widely held by medicine today, looks at the body as a machine that can be repaired. And who would not want to be “fixed” if it meant feeling fit and well again? The instant cure is very seductive to be healthy is something noone would spurn and yet chronic diseases are here and are not always “fixable”. Further more there is a price to be paid for this quick fix approach. When we see the body as a machine that is broken and needs mending we ignore the possibility that sickness is a cryptic message sifting up through the symptoms of blood, sweat and tears to tell us that we are out of balance in our lives. We ignore this at our peril. When symptoms are superficially alleviated the message is crushed beneath the surface only to rise again at some future time and place of illness.

Illness can be seen as an opportunity to take stock. In Ancient Greece there were temples which contained rooms for sick people to retreat into to be healed by the gods and goddesses. This was a time of quiet introspection based on the understanding that illness is a sacred space for inner work to be done so that healing may come from the core of our being. This means that the goal of healing is peace of mind and whether the body is “fixed” or not, is irrelevant. It is then a bonus to find the body rejuvenated but it is not the primary focus.

The late effects of polio have made me review my life and this has been a painful process. Having had polio as a child I needed to overcome my disability in order to be on a par with the able-bodied world. I viewed the world as challenging and felt I needed to prove myself as good as the next (able bodied person) person. An addiction to challenge followed and a pursuit of overcoming obstacles. I strove for myself and also to contribute to the world as mother and as therapist. My attitude was to pack in as much as I could – working, socialising, exercising – it was all grist to my mill and of no surprise to others when I developed the symptoms of post polio syndrome.

Frustration, fear and despair descended on me at that time and I felt I would never be able to enjoy my life again. How could I if I was not the capable productive woman I had always been? In my mind there was no room for change – I wanted to get back to that busy life style that felt so rewarding. Slowly I had to face and accept the fact that my catalogue of symptoms was not going to vanish away and my old life and identity needed to change.

To see that there is a purpose to suffering is not to romanticise it but it does make it more bearable and, hopefully, understandable. It seems to me possible that Life chooses for some of us to be active, healthy achievers in order for work to be done out in the world. It could also be possible that life chooses for some others of us to be sick in order that deeper work of growth is done on behalf of the collective. I believe that we are all part of a web of life – each a part of the whole. I therefore believe that I as part of you experience this illness in order to contribute to our wholeness. What I have to contribute now is perhaps not as tangible as the work I was able to do when I was well but I feel that the work of growth is as valid as my previous contribution. I am now able to look at my life with more of an overview and hopefully my insights might help others.

It seems to me that the part the late effects of polio have played in my life to help bring about transformation, is to have me learn to let go of old outmoded ways of thinking and feeling and behaving. Attachment to achieving, pushing on through life without regard for mind or body has placed much stress on my immune system. I have perceived the world as a challenge and myself as a warrior woman ready to take on the battle it presents. I have seen life as a struggle in which I need to prove myself, an exam in which I need to come out top. I do not believe that illness is solely due to one’s attitude in life. There are many components involved both genetic and environmental but attitude it seems to me is the clincher. I may have a predisposition to post polio syndrome but by cultivating a relaxed and easy approach to life I could perhaps have avoided the full blown traumas

of it.

Slowly I have come to realise that I need to change my perception of life and start to see the world as a place to appreciate – full of potential delight. Even though I may be unwell and cannot work as I used to, I can still choose to live as the Buddhists might say with an attitude of “Mindfulness”.

Mindfulness involves letting go of old conditioned attitudes and perceptions in order to appreciate what is and so allow the flow of life’s energy. How to let go? It seems to me that letting go is not truly possible unless it is a movement towards or into another state of being. We cannot let go of the familiar ways of reacting and behaving however undermining they may be to health unless we have the promise of a different and better way of being. Gautauma Buddha over two thousand years ago talked of attachment as the root of all suffering. When we hang onto old emotional states such as anger, grief, anxiety, or fear we suffer. Buddhism suggests that freedom from attachment to these states arises when we let go of them and move towards an acceptance of what is. This means the calming of the fearful and frenzied mind so that it may value, appreciate and enjoy whatever life brings.

When we start to trust that there is enjoyment to be found in the small details of life – a conversation with a friend, the warm smell of the dinner cooking, the play of sunlight on leaves then we are letting go to live in a calm appreciation of this moment. When we do this we are giving the body and mind the chance to deeply relax and in this space healing can take place. At this point we are flowing with the energy of life rather than against it. This then is the opportunity of illness – the chance to be mindful of the moment so that mind and body can heal. Physical symptoms may not vanish away – tissue damage may have taken place and will not heal instantaneously but a process has started of letting go and relaxing to focus on absorbing the every day pleasures that are accessible in the here and now.

We are more than our symptoms – we have the awareness to choose to take the opportunities life presents and appreciate and value the gifts the senses bring. The simple pleasures of enjoying the summer rain or sitting by a roaring fire in the depth of winter can be lost in a busy world whose prime concern often seems to be the cultivation of the material rather than the spiritual. For me these pleasures allow me to feel fully alive even when sick and tired.

I am by no means out of the woods of post polio syndrome and I do not wish to sound like Pollyanna and give the impression that illness is a wonderful thing. Most days I am frustrated, saddened and scared by the symptoms experience but the antidote that helps me out of the dark tunnel is there should I choose to access it. Firstly I become aware and tune into the thoughts and feelings that I am identifying with, then I let go of them by turning my attention to appreciate something in my environment in this moment. This is a choice still available to me in spite of everything and through the choosing comes a healing.

This attitude of “mindfulness” does not mean ignoring the darker forces of the external world. I am only too well aware for example of the damage done to our immune systems through pollution and the over use of pesticides. Illness is not an event that happens in isolation – we are all interconnected and we are all affected by poisoned air and water.

Appreciative acceptance of our immediate environment cannot mean we avert our gaze from these atrocities and think beautiful thoughts. Instead we determine to ensure that we can value our world even more fully by helping it to heal collectively. This may mean campaigning for organic farming, getting involved in a charitable organisation, signing a petition against the fluridisation of our water

– whatever it takes. The more we contribute to the wellbeing of the collective and are absorbed in

something beyond our own complaints the more we open to life and heal ourselves as individuals.

Post polio has given me the time and space to try to understand a little more about the purpose and

the meaning of my life. Let me be clear – if I could choose to be sick or well I would wave the

magic wand for wellness any day! I have however been dealt this particular hand of cards and I am

grateful that it has allowed me to understand the importance and the need to learn to smell those

roses along the way. I still take my herbs and vitamins and take (gentle) exercise but the difference now is that I no longer strain to get well in order to simply carry on living my life in the stressful way I used to live it. Instead I am able more and more to aspire towards an attitude of acceptance and appreciation of my life as it is. The gifts are there – the comfort of a friend, listening to music, appreciating silence, reading a good book – they all bring pleasure in this moment. And in that moment healing grows.

Changing Lanes

by Michael Creurer <mpcreurer@pacificcoast.net>

I have published a booklet titled Changing Lanes…a guide to help when ageing, illness or disability forces us into the Slow Lane. I write from the perspective of a polio survivor who has experienced many changes because of disability. The booklet contains personal stories combined with psychoeducational concepts which people can use in their own lives.

The booklet has been very well received by my local organization, the Post Polio Awareness and Support Society of British Columbia.

LincsPPN Members to receive free copy

All new members and those renewing membership for the year April 98 – March 99 will receive a free copy of this booklet.

See also the Lincolnshire Post-Polio Network Library Booklist catalogue entry for

Michael Creurer

Today I Smiled

Author Unknown

Today I smiled, and all at once Things didn’t look so bad.

Today I share with someone else, A bit of hope I had.

Today I sang a little song, And felt my heart grow light, And walked a happy little mile, With not a cloud in sight.

Today I worked with what I had And longed for nothing more, And what had seemed like only weeds, Were flowers at my door.

Today I loved a little more, Complained a little less, And in the giving of myself, Forgot my weariness.

from Linda Boudreau

Kings County Post Polio Support Group Go-Ordinator – Nova Scotia.

<sheralee@glinx.com>

How lucky I am

On the basis of what I have observed in life or learned from others: It’s like some people see themselves as a victim of circumstance, while others see themselves as a survivor. Can as opposed to Can’t! “Imagination is greater than knowledge.” (Einstein) It’s realising while I’m bundled up in a patio chair, sitting on the front deck of my house on the bay, no longer able to walk the beaches, or hike the trails, or work six to seven days a week in the classroom…… how lucky I am to have the opportunity to sit here and observe the wildlife and their wonderful sounds, right here all around me. Seven bald eagles are screeching their shrill calls as they come and go from the tree next door. The goldey-eyed, black and white ducks who look like they’ve just slicked back their hair on top, are quietly and patiently swimming on the clear, tranquil waters, waiting for feed to swim by. A couple of mallards land and hunt for mussels in the shallow waters, while a larger flock of Canadian Geese hum swiftly and lowly over the bay. Would I have the opportunity to observe this gift of peace, beauty, and order in the colours of a spectacular sunset, God’s magnificent creations, if I were still thrusting my life in the battles of public education and traffic when I was choosing to ‘take on the world’?

Karyn Lindegaard, Alaska

<elindega@ptialaska.net>

How to Lie to the Bathroom Scales

Weigh yourself with clothes on, after dinner. And then again in the morning, without clothes, before breakfast because its nice to see how much weight you’ve lost overnight.

Never weigh yourself with wet hair.

When weighing remove everything, including glasses. In this case, blurred vision is an asset. (Don’t forget the earrings, those things add at least a pound.)

Use cheap scales only, never the medical kinds, because they are always five pounds off … To your advantage.

Always go the bathroom first.

Stand with arms raised, making pressure on the scales lighter.

Don’t eat or drink in the morning until AFTER you ‘ve weight in, completely naked of course. Weigh yourself after a haircut, this is good for at least half a pound of hair (hopefully).

Exhale with all your might first BEFORE stepping onto the scale (air has to weigh something, right?)

Start out with just one foot on the scale, then holding onto the towel rack in front of you, slowly edge your other foot on and slowly let off the rack. Admittedly, this takes time, but it’s worth it, you will weight at least two pounds less than if you’d stepped on normally.

Penny O’Leary

<oleary.ocs@worldnet.att.net>

CONTACTS IN YOUR AREALincolnshire Post Polio Network and Leicestershire Post Polio Network now have members in many counties throughout the UK. If you would like to be put in touch with those in your area

please ring and let us know. Your name will not be given out unless you contact us.

Thoughts on:

In the Shadow of Polio : a Personal and Social History by Kathryn Black

Clarissa Lassaline

Librarian, OMOD, Post Polio Library Sudbury Chapter, Ontario, Canada

This is a brave and tender reconstruction of one family’s dark tale of polio interwoven with the story of the polio years of the 40s and 50s in general. It is an exposure of the human sacrifice and devastation, a gentle probe of wounds and suffering through the wall of society’s silence and indifference, a testimonial to the all-but-forgotten polio-stricken, and especially those who were severely handicapped.

In this tale, a little girl loses her mother to polio, and her family too. That child now grown must delve into the collective past to better perceive the utter severity of polio’s ravages and the mechanisms by which life with severe disability was remade. She comes to understand how these changes affected not only the polio patient but also the entire family. With each new aspect explored, there is a greater grasp of the stark reality of her mother’s life as a respiratory quadriplegic and a better comprehension of why she was not able to live with her polio-changed self, as many others, just as severely handicapped, did. It is here that Ms. Black explores the very essence of the polio experience. It seems there is not a feeling too complex, a thought too personal that she has not turned over and over and examined in a thousand ways in her need to reach back and understand what happened to her mother. She does this gently, with sensitivity. She does it with infinite tenderness, as if in each polio person there is a little bit of the mother she is trying to find.

This personal quest drives the author to examine in fair detail the era encompassing her own mother’s harsh polio experience so that those dark months of long ago can be recreated minute by minute, week by week. This need to revisit that time in her family’s history that changed their lives irrevocably is paramount. It is visceral. Many other polio survivors too young at the time of the disease to have their own memories of what happened will perhaps recognize this need. Many may recognize as well the silences and voids left by a world that managed to put polio completely from its mind.

If the very scope of this search is one of the great strengths of the book, it is in large part due to the openness of the author and her unjudgemental probing. Ms. Black has chosen not to obscure personal or familial traumas but rather to clarify the devastation wrought from severe paralysis by examining it in all its aspects. Many polio survivors, many severely handicapped, have come to her aid with their stories and thoughts. These recollections strike a deep cord for all of us with a polio past, not least of which those too young to remember the original polio now dealing with the late effects and experiencing, perhaps for the first time, what it means to be handicapped. Guilt, belief in mind over matter, accomplishment in the face of adversity all come rushing back from a very dim past. The mantra of never complaining and the chasm of silence fall back into place. And what of the hope, unspoken, grasped and clung to? Whomsoever polio cut down will recognize these things and must know, from their on personal experience of it, or intuitively, that ‘the amount of adaptation and acceptance that the severely handicapped from polio had to cope with is staggering’. Not only the crushing enormity of the limitations of severe paralysis had to be dealt with but so did the

prevailing attitudes of a society which believed in overcoming the impossible and which clearly approved those who made an effort to fit back into the norm again. Not all could. This collective ‘refutation of what polio really did to people and their lives’, writes Ms. Black, ‘…diminished the profound experience of many patients’.

There were moments of alienation initially for this reader whenever the focus shifted from the young mother lying motionless in her iron lung to the healthy little girl who didn’t know where her mother was, until gradually it became impossible to separate the one from the other. More often than not the polio experience, in our recollections, is considered solely in terms of the person stricken with the disease. This book is the family’s tale of polio, inseparable. All were deeply affected by it, their lives shook up in a profound way. Polio touched Ms. Black just as surely as it did the mother it took away from her, as it did so many other families who were all changed by it. And it is in this sense that she answers yes to the question asked by a respiratory quadriplegic: are you one of us?

Ultimately, the author must conclude that her mother, and her family, were not able to overcome the obstacles that polio presented. That sometimes when the cards are heavily stacked against us, it really isn’t possible to change our life stories, to replace the person we were with a new one. It is a measure of the author’s deep compassion to have been able to explore fully, without in any way minimizing the individual polio experience, the insurmountable odds that could, and sometimes did, win out.

In the Shadow of Polio : a Personal and Social History by Kathryn Black. Addison-Wesley Publishing Co., 1996.

Kathryn Black’s Book can be ordered from www.amazon.com in paperback.

Healing the Blues

Drug Free Psychotherapy for Depression. by Dorothea Nudelman Polio Survivor and David Willingham, MSW

“This book packs a wallop! I have read hundreds of books about psychotherapy, but I cannot remember one that so thoroughly describes what actually happens in the therapy hour…. For anyone who has ever wondered how, and even if, psychotherapy works, read this book! You will become a believer!”

Carol Zimbleman, MSW, Stanford University Employee Assistance Program, Private Practice.

We still have a few copies of this hardback autographed book of 235 pages donated to us by Dorothea <dnudelman@earthlink.net> to help us raise funds. It is excellently written and many of us have found that we can relate to what Dorothea went through and it can help us and our families to come to terms with our present difficulties.

We recommend that it is read by partners, families and friends. One husband rang to say “For the first time since my wife started having problems I now have some understanding of what she has been and is going through, it has been of great help to me, and has allowed us to talk more freely, thank you for making this available to us in this country.”

Price in the UK is £10 including postage.

See also the Lincolnshire Post-Polio Network Library Booklist catalogue entry for

Dorothea Nudelman & David Willingham, MSW

POST POLIO SYNDROME

by Lauro Halstead, MD

April 1998 – 9.4.98 Scientific American U.K. £3.20

Decades after recovering much of their muscular strength, survivors of paralytic polio are reporting unexpected fatigue, pain and weakness. The cause appears to be degeneration of motor neurones.

Lauro S. Halstead is director of the spinal-cord injury and post-polio programs at the National Rehabilitation Hospital in Washington D.C., and clinical professor of medicine at the Georgetown School of Medicine. He received his M.D. from the University of Rochester in 1963 and a master of public health degree from Harvard University in 1970. Halstead taught rehabilitation medicine and epidemiology at Rochester and Baylor College of Medicine for more than 20 years. His research interests include the late effects of polio, metabolic and endocrine changes in persons with spinalcord injury, enhancing fertility in men with spinal-cord injuries and developing outcome measures for rehabilitation patients.

STOP PRESS! We applied for and received permission from Scientific American to

reproduce the article in Lincolnshire Post-Polio Library. You can read it now! See also the Lincolnshire Post-Polio Library catalogue entry for

Halstead, Lauro S., MD

Hypertension in PPS

Thyagarajan Subramanian, MD

Assistant Professor of Neurology Emory University, USA.

<tsubram@emory.edu>

Sleep Apnea is an important cause for hypertension and you may not even know that you have sleep apnea. This condition is very common in polio survivors and in patients with PPS. Check with your spouse/companion whether you have periods of apnea (no breathing) when you are in deep sleep. If you don’t have anyone who can do this or if you have one who refuses to check on you, put a tape recorder or VCR attached to a microphone close to your bed and tape your sleep sounds. If you have noisy breathing/snoring, the periods of apnea will be readily apparent from the tape. If you don’t have noisy breathing you have to carefully listen to find your breathing pattern and then figure out if you have periods of apnea. Remember to run the tape at EP mode (Long Play). This is a cheap screen for sleep apnea. Confirmatory testing involves getting a formal sleep study in a sleep lab.

POLIO SURVIVORS JAZZ UP YOUR CANES, SCOOTERS, AND WHEELCHAIRS

Polio Survivors believe that using aids and assistive devices make them look more disabled, and therefore fight against using them. Education on disability is sorely lacking and should be started in

infant school when children accept life much more easily. The general public do not know what to say to someone who is using a cane, riding a scooter or in a wheelchair. They look away, they talk to the people with you. This is why we fight so hard against these aids. However there is an answer and it works.

Dress brightly yourself and jazz up your cane, scooter, or wheelchair. Make a statement to the world. ‘I am here, this is me, take me as I am. I might be using a cane or wheels but they are no different to shoes, they are just an aid to moving from one place to another.’ Suggestions are to decorate your cane to match your outfit (sleeves of material to match can be slipped over it and fixed so they dent slip off) have it sprayed fluorescent colours, add stickers or walking stick badges, or have a suitable handle added to a carved wooden one. For our scooters and wheelchairs, make or buy a multi-coloured rucksack/bag for the back, jazz up that basket on the front, add badges and stickers, transfers, holograms, in fact anything you can think of that will make you more noticeable. Allow folks to talk to you, to start a conversation, give them something that they have to comment on.

Gwen Hunn, RN, BS in California <celticwings@EARTHLINK.NET>. I sewed a Harley Davidson “WINGS” patch on the back on my Quickie wheelchair…the biker bros loved it!!

David G. Henson, Salt Lake <dhenson@englab.slcc.edu> says I have a “hand-me-down” cane made of Texas cedar. It is not only beautiful wood, but it is also unique in character. I get comments on the cane, not on my limp nor why I am in need of its (cane’s) use. This “deflection” of perspective may give rise to further questions about my disability without embarrassment to either party.

Elizabeth Lounsbury, Chairperson Ontario March of Dimes <loonie@ican.net>. I’ll never forget the first time I went outside in my suburban home in my wheel chair. The first person I saw said “ah come on E, who do you think you’re fooling?”. It had already been over a month since I had bought it and that was the first time I had used it. Wouldn’t have used it then, but my husband said,”I have taken it out and we are going for a walk. If you won’t come on your own you’ll come with force.” I’ve come a long way since that day. Yes Hils jazzing things up does help. I shocked everyone when I ordered a purple electric chair. Was at a meeting in Toronto last week. I wore a mauve suit had forgotten that my chair was purple. The first comment I received was ‘boy do you ever look striking’. I would never have thought to colour coordinate my clothes with my chair. The thing that had been noticed was the colour not the fact that I was in a new chair. I love my purple chair. My husband thought I was nuts but said it’s going to be part off you, if that’s what you want go for it. We have a company in Canada that makes all kinds of decorative canes. One friend has a red chair & several different canes to go with different outfits.

LINCOLNSHIRE POST-POLIO NETWORK

Registered Charity No. 1064177

Articles for publication by May 18th please – Publication date May 24th 1998 MEMBERSHIP for this financial year is £10.00

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

info@lincolnshirepostpolio.org.uk

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin9810.html> Last modification: 21st February 2010.

Linc Pin Volume 1 Issue 10 Read More »

Linc Pin Volume 1 Issue 9

THE LINC-PIN

Issue No. 9 – January 1998 WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/ Registered Charity No. 1064177

CONTENTS

1998 The Year of the Positive Polio Survivor

14th February 1998 First Anniversary of our WebSite now containing over 60 full text medical articles

Dr. Mandy Bretman, Director of Public Health, Lincolnshire Health Authority,

chaired the inaugural meeting of the

Neuro Patients Forum

at Lincoln County Hospital on the 19th January 1998 To progress development of a local neurological service.

This was an interesting meeting with many problems being identified by the representatives of the neurological support groups present. The next meeting is on 25th February 1998. A positive step forward for Polio Survivors in Lincolnshire. We will be reporting on the outcome of these two meetings in our next newsletter.

H.R.H. Queen Elizabeth, the Queen Mother. Our Very Best Wishes for a Speedy Recovery.

Many Get Well Messages have arrived in our mail box from around the World…. Here are just a few……

Many of us Americans remember the courage of the Queen Mum and the King when they refused to leave London during the war. We have tremendous admiration for her and pray for her speedy recovery. Grace Young.

Those of us in Florida also add our heartfelt concems and prayers to all the others for the Queen Mother’s recovery. Barbara Goldstein.

Even in Alaska we are concerned for the Queen’s Mum. Our well wishes and prayers from the north! Karyl.

Best Wishes to the Queen Mum, for a speedy recovery. From the folks in Michigan who admire her. Donnie.

CONTENTS

‘Front Page’

Editorial

PPS Symptoms by Tom Walter

Question on PPS answered by Dr. Subramanain

South Africa Pages

Fire Drill by Viola Pahl, White Rock, Canada

Waynesboro Fire Department – Randy Riddle writes

Lincolnshire Fire Brigade Fire Safety Team Advise

You hear the term PPS……. by Hilary Hallam

Energy Presents by Linda Van Aken

Sharing with your family by Shirley from Kansas, USA

Grace R Young, MA, OTR and Polio Survivor writes about muscles, fatigue, scooters and

joint replacement

MRI Scans

I know I have PPS when:

Increased weight and PPS

Letters and stories from Polio Survivors

Why We Can’t Get Any Better– Jon Schoen, Polio Survivor

My memories of the day that London was silent – 6.9.97. – Sylvia Fortune

Computer CD on PPS from GINI

Our Contact Information

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

Lincolnshire Post-Polio Network

1998 the year of the Positive Polio Survivor. (editorial)

I have at last got a diagnosis for my symptoms. It has taken me nearly three years and following many tests with nothing else found, I now have a letter from Queens Medical Centre, Nottingham stating that they can confidently diagnose the post polio syndrome and treat the symptoms on their

merits.

Many more PPS specialists around the world are giving us permission to add their medical articles to our WebSite for which we thank them.

We are now on the Patients Forum for the Neuroscience’s Department at Queens Medical Centre and the new Neuro Patients Forum for Lincolnshire Health Authority. The aim of both groups is to work with recognised neurological support groups to improve on the service provided. Certainly a step in the right direction. We will let you know how things progress as they happen. If anyone has any information on things that have happened to them – good or bad – whilst trying to get medical help in this area then we would be happy to pass the information on. If you live out of our Regional Health Authority then we recommend that you send your stories to the Director of Public Health in your area so that they are kept up to date with problems being incurred by people with neurological conditions.

This newsletter is a POSITIVE one. 95% of it written by Polio Survivors. Full of stories, hints and tips and suggestions as to how you might cope better whilst you get your own diagnosis for your many and varied symptoms. Remember PPS is by diagnosis of exclusion of other conditions. It would not be a good idea if Doctors said ‘Oh you had Polio, then it must be PPS’ and then later you find that you had something else that should have been treated earlier.

Those of us with computers and modems which allow internet access are now able to share information, hints, tips, ideas, and much more with other Polio Survivors and PPS specialists around the World on a daily basis. We can correspond by electronic mail. We can subscribe to Polio discussion lists. We can install computer programs that allow us to ‘type-talk’ to each other live, and also to speak live via microphone and speakers. All this takes place on the computer, which you have to buy, which is attached to your phone line and you only pay local call rate for all the time online plus a monthly fee to your Internet Service Provider.

We are all different with many different problems, but we are all very inventive. So let’s hear your tips, ideas, stories, whatever you would like to tell us. We look forward to hearing from you.

Hilary Hallam, LincsPPN Hon. Sec., Polio Survivor of 1952, aged 5.

PPS SYMPTOMS

by Tom Walter, Polio Survivor <Tomincal@aol.com>

New progressive muscle weakness,

including muscles that were not originally affected by polio. Unusual fatigue,

Decreased physical endurance, Breathing difficulties, Swallowing problems,

Sleep disturbances, Pain in muscles and joints.

And don’t forget about all these POSSIBLE symptoms –

— digestive tract involvement, including constipation and/or diarrhoea; — genito-urinary involvement;

— weight gain;

— slowing of memory, concentration and attention;

— diminished eyesight and/or hearing when “over” tired; — falling down more than usual or customary;

— a chronic “itch” in the ear canal;

— muscle twitching and tingling, sharp shooting pains; and — intolerance for cold (especially) and/or heat.

Other diseases that may mimic the above have to be “ruled out” for a diagnosis of PPS.

Is it possible to have PPS with an EMG that doesn’t show the patterns of polio on the unaffected side?

Question asked on the St. Johns Post-Polio-Med List

Residual muscle weakness is one of the hall marks of an attack of paralytic polio. However, some individuals have complete recovery of muscle innervation after paralytic polio. If there was denervation after an attack of polio followed by partial or incomplete recovery there are changes in the EMG that can be detected for a long time. If these changes are not found on EMG it does not rule out the possibility that you had paralytic polio.

As far as diagnosing post polio syndrome with no definitive historical data to support an attack of paralytic polio, there are several alternative approaches.

1. Exclude any known causes for your new symptoms other than post-polio.

2. Do a careful exam of your affected and unaffected sides both clinically and if necessary with

an EMG including single fiber EMG to look for changes suggestive of post polio.

3. Observe you periodically for any signs of progression of symptoms.

Regardless of which course you take, I would suggest that you consult a physician knowledgeable in PPS.

Thyagarajan Subramanian, MD – Assistant Professor of Neurology Emery University, USA.

SOUTH AFRICA PAGES

Priscilla Webster writes……. ‘I went to count, on my hand, the doctors who accept PPS and then discovered I only had a thumb’

At the moment there is nothing exciting about me because I had polio as a child and really don’t remember a thing about it. I was probably one of those for whom it was too traumatic so I buried it in my subconscious. My family reckon I was between 3 & 4 years old. Over the last 11 years I have suffered tremendously in the hands of ‘Rocket Scientists’ who have diagnosed me with all sorts of weird and wonderful things. One specialist even called me a human freak. Not good for the ego!

In all fairness to the doctors I do also suffer from diabetes, neuropathy, asthma, chronic open angle glaucoma, arthritis, hypertension, epilepsy (non-active) and PPS.

I came out of hospital in early October after having an angiogram and was so humiliated. Anyway as usual too much pain and couldn’t sleep so was looking up pain on the Internet when I saw PostPolio Syndrome. Remembering something my ortho doctor mentioned many years ago I logged in and nearly passed out when I saw all my symptoms. I wrote to my ortho guy and he phoned back to tell me that I definitely had it. (He’s just come back from a trip to Canada and was updated by his son! He’s 84 and his sons are all ortho surgeons. Wonderful family. This guy still works.)

I’m dragging myself up off the ground and making darn sure no other PPS sufferer ever goes through what I went through. At the moment I am working like a lunatic because I am doing it all myself. Thank goodness for wonderful husbands and personal computers. The information off the Internet has helped me tremendously. The South African press is a bit lethargic but we are getting there. Education is going to be very important. I’ve spent days in hospitals (private ones) where I’ve had to go without a bath because they will not assist me! No one has been trained to even know about polio.

South African Mail and Guardian, December 9th 1997 HealthStarting forty or fifty years after childhood polio, victims encounter their disease once more in a different and little understood form called Post Polio Syndrome. Now a South Africanassociation has been set up to help survivors says organiser Priscilla Webster…….. For moreinformation contactPriscilla WebsterThe South African Post Polio Syndrome Association, PO Box 1155, Umkomaas, 4170 South Africa.Email cillawebster@telkomsa.netWebSite addresshttp://www.postpolio.co.za/

Mike & Yvonne Isaacson both Polio Survivors from Cape Town, South Africa.

Two years ago, my sister who lives in Cambridge found a book on polio and sent it to me. It was “A Summer Plague” by Tony Gould. I found it to be absolutely fascinating and very informative. You see, both my wife and I have polio – I got mine in 1940 and she got hers in 1944. I was affected in both legs and my wife in both legs and one side of the back. That led to a major scoliosis which in turn led to innumerable operations to correct the curvature.

In about 1976 my wife began complaining of a sharp pain virtually following the course of the right radial nerve. X-rays and scans taken over the period of about two years showed that nothing was wrong with the vertebrae or the foramina or the nerve itself and after exhaustive tests, the doctors diagnosed “a residual weakness which was not recognised as such by the orthopaedic specialist. Analgesics and NSAID’s were prescribed aplenty and these eventually caused a stomach ulcer, so they had to be stopped and my wife had to just live with the pain. In the meanwhile, the pain “growed and growed” just like Topsy. General fatigue also appeared and my wife had all the classic symptoms of PPS but we still didn’t know what it was.

In his book, Tony Gould describes the first appearance, investigations into and eventual acceptance amongst the medical fraternity of what we now know as PPS. Self diagnosis is not to be recommended, but the symptoms described in Tony Gould’s book seemed to fit those presented by my wife. We discussed PPS with our General Practitioner, but he had never heard of it and couldn’t offer any help, neither was he able to make a diagnosis other than “Well, the body does develop general aches and pains as we all get older.

A cousin of mine who is a Doctor living in Dulwich happened to be on a visit to Cape Town where my wife and I now live. I took him to a plush restaurant, bought him a slice of his favourite cheese cake and a cup of coffee and asked him if he would be prepared to research PPS for me when he got back to Dulwich. The cheese cake must have been good, and he agreed!!

A short time later, he wrote to me enclosing a number of Medical Papers from the Lancet and from the Lincolnshire Post Polio Network, which he had found while browsing on the Internet. Quite frankly, although I knew that it was full of information, the Internet was the very last place that I had ever expected to find anything really useful about Post Polio Sequelae. I didn’t even subscribe to the Internet at the time, but eventually did so at my cousin’s suggestion. I looked up “polio” and found the Lincolnshire Post Polio Network and was utterly amazed at the wealth of information it contained. I have downloaded and printed quite a few of the Papers in the library and I am studying them and finally finding out how to cope with PPS. I also downloaded one of your recent Newsletters in which I found ‘Cilla’s e-mail address and I lost no time in contacting her.

Finally, after years in the wilderness, I know that what my wife has is Post Polio Syndrome. I know what it is. I know what it does. And I know how to combat it, all thanks to the Lincolnshire Post Polio Network…..

…… and a slice of cheesecake!!!!!!

Tony Gould’s Book can be ordered from www.amazon.com in either hardback or paperback.

UBUNTU (means Humanity)

I take you for who you are and what you have achieved in life,

not for the colour of your skin. That is humanity.

Smiling to all who come to my door is Ubuntu. I do not hold you responsible for pain.

It is difficult being human. It is difficult for me

tounderstand your pain and sorrow, but in your tragedy I tried.

I know it must be difficult for you to understand my pain.

For you, a perfectly formed human being, it is almost impossible

to understand the inhumanity of the pain I suffer twenty four hours a day,

because I have not told you about it. You cannot understand what it is like for me to sit up all night

trying to wash away my pain with tears, because you have slept all night.

How could you know what pain is involved in me going for a walk,

when you yourself can walk. I ask not that you pity me, but that you consider me.

Our lives are intertwined

The poor and the rich The educated with the uneducated. Sorrow and joy are ours to share My respect for you and yours

should ensure your respect for me and mine. Failure to respect your fellow man,

the laws of the land and the laws of nature Automatically exclude you from the membership of Ubuntu.

Priscilla Webster 27th October 1997

FIRE DRILL – by Viola Pahl, White Rock, Canada

This is a serious subject, but I hope this story will not only make you smile, but also ensure that you check your own house/workplace and ensure that you have an escape plan that will work for you.

It was hilarious. The fire drill was conducted every two weeks at the Rehabilitation Centre to see how quickly all handicapped people could be evacuated. I was at the Rehab Centre for six weeks. The many-featured exercise classes were from ten in the morning until three in the afternoon. My strength did not allow me to last all day, so I went to bed right after lunch in a remote room in the Rehab Centre. I’d have about three quarters of an hour’s sleep, and then rejoin the group. During the six weeks there, approximately 3 fire drills were held generally right after lunch. The staff forgot about me in the remote room as they hurriedly got everyone out, and the fire marshals (different personnel each time) were in a tizzy, because three times in a row, they could not present a perfect fire drill – there was always ONE burned statistic on paper – namely me. I had either slept through the alarms, or had not reacted swiftly enough to get out of the bed into my chair and into the hallways, or if I suspected it was a drill, I just stayed in bed until the excitement was over. (This was 49 years ago.)

Now we live on the fifth floor of a concrete condo – even the walls in each suite are concrete. I phoned the fire department and asked, “What do I do in the event of a fire? Get out on the open balcony? I might under stress be able to go down a flight of stairs – but if the fire were on that floor – I’d probably never be able to get UP the flight of stairs.” The fire marshal advised thus: “First, stay in your suite and phone the fire department and tell them that you are a handicapped person in such and such a suite.” If appropriate, he advised I may go out on the open balcony and a fireman would come up a ladder and rescue me. “Sir,” I said, “I’d die if I had to be carried down a ladder by a fireman.” I am horribly afraid of heights (even pre-polio). He cheerily replied: “Oh no, you wouldn’t, madam. We’d look after you.” Yeh???? Anyhow, our small city now has a cherry-picker apparatus (is that term familiar to all of you?) and when they were testing it out – hurrah – it was as high as our fifth floor condo. Wow – that would sure beat going down in a ladder!

I would advise everyone to phone their local fire station and get all the hints possible about how you with your particular limitations might cope with a fire situation. Personally, I pray that I’ll never have to flee a fire – the very thought of it sends a chill down my spine as it does to most people, disabled or able-bodied.

For details of Viola’s books see her entry in our Library Booklist

Randy Riddle writes Waynesboro Fire Department 300 West Broad St. Waynesboro, VA, 22980

randyr@rica.net

My name is Randy Riddle and I am a Polio Survivor. I am a Small town fire-fighter. I just a while back was off from duty because of second degree burns to my face I received during fighting a fire in which a lady died. This was a lady in her mid 30’s, and in good physical shape it seems. So this now has me asking this, if she was in good shape and died what chance do my polio friends have? If you have any disabilities that restrict any movements or your thought making process then you are in grave danger in your own dwelling. You need to start (like yesterday) to draw up a home plan of escape that you can use to help you out in those first minutes of danger (that is all the time you get). The first step you need to take is, get in touch with your local fire department and get all the information that you can. They will be more than glad to help you. The Drs. have helped you with all of the disabilities that have come into your lives, now it is the turn of the local fire departments to help you get out alive. Just remember this, that fire cares not of your lives or cares of any disabilities, it will take your life and all those around you in the time it has taken to read this message.

So PLEASE, PLEASE, PLAN NOW ON HOW TO GET OUT AND STAY OUT ALIVE.

LINCOLNSHIRE FIRE BRIGADE FIRE SAFETY TEAM ADVISE 01522 582222

Everyone should consider Fire Safety in the Home. If you have any form of disability then it is even more important that you look at your home and decide what you can do to ensure your safety. Make a fire plan.

Early warning of Fire is essential. You should have a smoke alarm on every level of your dwelling. One for every floor and it should be in the Hallway or Landing. These should be properly fitted, and tested on a weekly basis. If you have someone hard of hearing or deaf in the house then you should have flashing light fire alarms fitted as well. You should close all doors at night that separate the areas of possible fire from the escape route.

Escape Route is the next most important point. If you have a problem with mobility, have an electric chair, hoists, stairlift, respiratory equipment then you must consider what is best for you. A phone is essential in the bedroom if you have any difficulty in getting out of bed or the room. The Fire Safety Team of any Fire Brigade will be only too pleased to help you work out a specific fire plan for your special needs. Their telephone number will be in the phone book under FIRE and you need to ring the HQ telephone number and ask for the Fire Safety Team.

The following sequence of events that should be followed wherever fire occurs… and in simple terms its Get Out, Get Us Out and Stay Out…… and to expand on that they use the mnemonic FIRES.

F	Fires	An actual fire or suspected fire, the smell of burning, fire alarms sounding people shouting fire.Ensure that everyone has heard/seen the alarm sounding and has responded, if
I	Inform

the alarm has not sounded then shout at the top of your voice.

R	Retreat	Make sure that you move away from the fire area and close doors behind you.
E	Evacuate	Evacuate Do not waste time. Keep low in Smoke. Use the SAFEST exit.

Once outside phone the fire brigade from a SAFE phone. If doors are locked along your exit route keep a key on a hook near the door, but make sure that it is out of sight and that no-one can reach it through a letter box or see it from a window. Think Security.

S Stop Out Do not go back into the house for anything – not for personal belongings or

even pets and do not go back into the house until advised that it is safe to do so by the Fire Officer in attendance.

Bedroom Phones. Remember that the phone cable may run through the room or rooms which contain the seat of the fire and therefore may be susceptible to fire damage. This may be especially the case where the bedroom phone is an extension linebox or socket cabled to a master socket downstairs. You may want to consider a second phone line and ensure that the cabling comes into the bedroom directly from the outside of the house. Alternatively, a cellular phone kept charged in the bedroom can provide a backup to an internal extension. LincsPPN Administration

You hear the term PPS…….

To have had medical problems for some years that have been medically noted yet unexplained I am sure you will agree has been tough. You know you are an intelligent person, you know you are not imagining things, but if nothing can be found then you are left in limbo. Dare you go to the doctor with yet another problem? Will you be told, it’s your age, you are imagining this, maybe you ought to see a psychiatrist…… probably, you think. So no you decide, maybe next month and so you struggle on.

We thought Polio was part of our past lives. Had it. Recovered to a level. Managed. Got on with our lives. End of story. We have all achieved a great deal, many able to go on to highly qualified professional careers, and compete in many sports. Those of us who were left with hardly any easily visible sign have probably not even thought of the word Polio for many years or had little contact with anyone else who had Polio. So it’s not surprising that until we hear the words Post Polio do we even consider that the way the polio virus affected our bodies, could have any bearing on our problems.

For example you have a vision problem with one eye. Why on earth should you say I had polio as a child and my legs were paralysed? It would not be relevant, or would it?

Then you have the added problem of your partners, children, family and friends. How are they reacting to your seemingly ever increasing difficulties with no medical answer?

Some Polio Survivors have been given a diagnosis and then had tests to find that they don’t have that, so it must be….. and then you are tested for something else and again it’s not that, and you do the rounds of the hospital departments. Some have been diagnosed as having Motor Neurone Disease with a very short life span left, only to be told – as they didn’t get worse or die in the expected time – that it can’t be that. Some have been told that its all in their minds, it’s depression, take these tablets. Well, being honest, anyone would became ‘depressed’ going through this sort of medical minefield.

Then comes the day when you first hear the term Post Polio Syndrome or the Late Effects of Polio.

You start to read some information about it and so many of your symptoms seem to fit. You have to approach this very carefully. There are no tests far PPS, it’s by diagnosis of exclusion. It would be terrible if you said to the Doctor, ‘I had polio, I have PPS’ and other conditions you could have were not looked for.

You feel relieved that there is something else to consider and then worried because you don’t know what the future holds. It may also bring back memories of the past, hospitals, operations, being away from parents, not understanding what was going on. This can be quite traumatic and many do not want to even think of PPS, let alone discuss it for this reason. This is quite understandable. You need the support of your GP, your family, and maybe even some counselling to help you bring the past out into the open so that you can cope with now and the future. Nearly all Polio Survivors benefit from the support they can get from talking to other Polio Survivors going through the same problems.

So what is the best way to approach this. Possibly take some information to the Doctor and tell him/her that as you are not medically qualified, you would appreciate him/her looking at what you have found and telling you whether it could be relevant in your case. Doctors are very busy people with a lot of paperwork coming through to read and they won’t have time to read much so it’s best not to take too much [information]. One comprehensive article or even just a couple of leaflets and a list of the other articles available on our WebSite would give them some starting information, plus a potted history of your life.

Write about when you had polio, how it affected you and how you recovered. Some Polio Survivors remember everything, some of us remember nothing. It’s difficult for elderly relatives to remember back 40 or more years, and they might also find this difficult. Our Parents, siblings and relatives must have been devastated when we caught Polio and will have gone through quite traumatic times, and they could easily find this an emotional experience as well.

Write a short history of your life, your education, your occupation (including being a mum and bringing up your children), your hobbies and sports and what levels you achieved. Now you have some basic information to refer to.

So what can you do whilst you wait for your GP to read the information and arrange for you to see a relevant specialist for your current problems.

You have been a Doer all your life, never given up, managed to pack 36 hours into every 24, refused help as you can manage, haven’t you? We haven’t found a Polio Survivor who does not agree with this statement – yet! When relatives ring me in the first instance, I always smile when they say ‘you have described my wife/husband exactly.’

The best advice is that you have got to change. You won’t like it at first, we didn’t, but we know it works. As a Polio Survivor, it doesn’t really matter what they find wrong with you, you need to look at your lifestyle, your weight and diet, your work, your house, your hobbies, in fact everything that you do. Involving the whole family and getting them to join with you in this and look at their lives as well, is a good idea.

Where are there places that you could do things to make life better for yourself? Where can you save energy and use it more wisely to do the things you want to do? There are many questions you could ask yourself. Many Polio Survivors will tell you that when this is first suggested to them that they replied that I am not that bad yet, I don’t need to think about any of this yet. However, most of us later agree that the earlier you start looking and changing your lifestyle then the easier things are and you are able to have a better quality of life.

These ideas are not to get you to stop doing what you like, but to save you as much energy as possible to allow you to use what you have to do what you want. If you pace yourself throughout the day, with work and rest periods you can do much more than if you get up and do too much in the morning and then can do nothing for the rest of the day. If you know that tomorrow is going to

be a busy day, then ensure that today and the day after are days of more rest. Ask yourself:-

• Is there any way I can alter things at work to save me energy?

• Is my computer monitor at the right height, would an ergonomic keyboard (keyboard split

and angled) help?

• Should I still be lifting heavy weights, can I use a trolley, get someone else to do it, split the

amounts to more manageable levels?

• Maybe a rucksack-type bag distributing the weight more evenly would make it easier to

carry things?

• Could someone else could dig the garden this year?

• Am I overweight?

• Do I eat a balanced diet?

• Am I wearing the right sort of shoes?

• I feel the cold more now, so should I get a hat and some gloves to wear when out?

• Is my bed the right height and comfortable?

• Can I get out of my armchair easily?

• Could I alter my kitchen cupboards so that I can easily reach the items?

• Would rails in the bathroom help me to get up off the toilet, into or out of the bath/shower?

• Maybe a downstairs toilet would save me many trips up and down stairs?

• Would a cane help me to walk better?

• Would an electric scooter or wheelchair allow me to get out more and do more?

• In sports, could I split this into smaller episodes, one game instead of two? There will be many more questions that you can think of.

Keep a diary each day of what you eat, the drugs and vitamins you take. How much pain and fatigue you have. What you do and how you feel. Have a Pain Chart, an Activity Chart, etc. numbering from 1 – 10 and working out your own criteria for the numbers. Write your criteria down defining what each number represents. Like 1 = pain free: 2 = twinges of mild pain occasionally through out the day, etc. Post these criteria in the front of your diary. We tend to have ‘brain fog’ and it helps to refer back to your criteria so your observations remain constant with the criteria. Also if you ever show your diary to your doctor he can see the definition of what a 1 or a 5 means to you. This will help in your communication with your physician and will result in better understanding on his part and better care of your medical condition for you.

The final most important thing is that you must remember that your Partner, Siblings, Children, Relatives, Friends and Work Colleagues will not know about PPS and your problems unless you tell them. Share it with them, share how you feel, ask them how they feel. Tell them what you are doing and you might be surprised at their reaction. They can’t help you if you don’t tell them. Remember it’s your body, it’s your decision, and it has to be made when you are ready to make it.

Hilary Hallam

Energy Presents

I discovered that if I count my energy presents like people who are dieting count their calories and fat grams I have much less problem with fatigue. During this busy holiday I am sure all of us can use the reminder that we need to use our energy wisely.

Imagine yourself with a basket of presents everyday. In the basket are 5-10 presents. Each present is

a Unit of Energy. As you go through your day you will use a present for every task you perform. When you take a shower and dress for the day you will need an energy present. If you run errands, for each place you stop may require a whole energy present just getting to and from the buildings. I have discovered for every 45 min I sit at the computer I use a present. If you prepare a meal that will take a present. Others may use more or less depending on your abilities and fatigue levels. Obviously it does not take long to use up that basket of presents in a normal day. So make sure that each of you use your gifts wisely. It requires rest (sleep) to refill the basket. Once the basket is empty there are no reserves and you must sleep to recharge and wait for the basket to refill.

It is possible to hoard some of your presents and save them for a special occasion. But please remember these presents are very perishable so will not keep very long. If you have a big event coming up then you must rest more and use less presents for several days prior, so that you are capable of withstanding the extra demands you may put on your body with a special activity. Should you exceed your box of presents for a special occasion, you may discover that the basket has fewer gifts inside for several days following. Thus instead of 10 presents you may only have 5 or 6. We are not the energizer bunnies and cannot keep going and going and going. We need to find ways of managing our energy use so that we can reduce our fatigue. It is difficult to determine how much energy you can expend in any given day without suffering ill affects from overdoing. However, I do believe we can manage our lives if we are aware of how much we exhaust ourselves just doing our daily chores.

It takes 3 times the energy to stand as to sit. It requires 3 times the energy to sit as to lie down. So keep this all in mind and rest often. Sit to do whatever projects you can and eliminate unnecessary activities. Oh and I always suggest that you save at least one energy present every day for something you enjoy doing. We deserve to indulge ourselves and need those positive reinforcements in our lives.

Linda Van Aken – DVanAken@aol.com

Sharing with your family

I had the problem of falling easily and worrying about shoes and things being left in the middle of the floor. I raised my daughter to be aware of making sure nothing was left ever in the middle of the floor but I did find I had to learn how to deal with unaware people when she started dating and her boyfriends would come over and leave shoes etc. in the middle of the floor. The best way to deal with it is, immediately when you come across something left where it could cause you to fall, call in a loud pleasant voice “whoever left these ‘shoes’ in the middle of the floor, please come immediately and move them, I cannot afford to fall anymore because I could get hurt so badly”. Then wait for them to come and show them where to put the article, like along the wall somewhere, and do not move until this has been accomplished. You will not have to do this very many times. They will see quickly how important it is to you, and your problem of stuff left in the middle of a path will disappear.

Start printing out some of the stuff that people talk about here that pertains to you and start talking about it with your family. You can open a conversation by saying, “You know, I was wondering why I was having this particular problem, and look what I have found on the Internet”, then use that as a platform to start to educate them on what problems you are finding difficult to deal with. I found most of my problems disappeared when I finally started communicating with my family. They cannot read your mind and they do not realize what things are beginning to be difficult for you until you tell them about it. You can do this in a light manner. Your family probably does not realize how afraid you are, even though you probably think the whole world can see it. We have got so good at learning to cope and adapt, lots of things you think should be apparent to them, they have got used

to thinking you can take care of yourself.

I remember the first time I had to make an issue of getting my husband to follow me into work and help me get across the ice covered street into the building. I had got more and more afraid of walking on ice and scared of falling, that when I knew it was going to be icy in the morning getting into work, I would get physically sick to my stomach and either force myself to go and creep across the street with my heart up in my throat, or I would call in sick, not even telling my husband of my fear.

Finally one day, I could not call in sick again, and I could not face the fear of getting myself across the street, and so I told him I need him to help me get into the building. But I didn’t explain the mornings of fear I had faced and I didn’t confess my days of sickness were due to being afraid to walk in on the ice so the first couple of times I asked him to help me he grudgingly came along and helped. Then finally one evening when I knew it was going to be bad in the morning and I told him I needed him to follow me into work, he blew up and hurt my feelings and I cried and finally told him of all the times of cold fear I had faced walking on the ice. He was just dumbfounded I had never told him before and I never had to ask him again to follow me into work. He always volunteered before I could ask. The point being, I had never shared my fear with him. I just tried to cope until could not any more, and then somehow, I felt he should just know what was going on in my head and all about my fear, when I had never shared it with him.

Start sharing what things are becoming difficult with your family. It will be kind of hard to begin but you will find that they will begin to understand and even start to try to be more of help to you with things you find difficult. And you will find that it is not so scary when you have someone to share it with.

by Shirley from Kansas, USA.

swhisman@earthlink.net

Grace R Young, MA, OTR and Polio Survivor writes

about muscles…

Even though you were told that you had “nonparalytic” polio, this doesn’t mean that you didn’t lose some motor units during the acute attack. It means that there was no clinical weakness. A muscle can lose as much as 50% of its motor units and still not show clinical weakness. However, the remaining motor units are working harder and longer. After many years of overworking, some of the remaining motor units start to give out.

During the acute attack most of the spinal cord is affected, even though much of it might recover within a few weeks. But we don’t really know whether or not there is subclinical damage to some of the muscles. That’s why many of us have new weakness in areas that we didn’t think were affected.

I have seen similar comments throughout the medical literature. However, after evaluating and treating almost 400 polio survivors over several years, I have to disagree. Many people with minimal residual weakness worked so hard to “pass” as normal they are presenting with greater losses proportionately than those with more severe effects who were not able to be “overachievers”.

I have even seen patients who state they never had polio (but someone in their family did when they were children) and now present with new muscle weakness and atrophy, and were diagnosed as PPS following EMGs. We know that almost the entire spinal cord is affected in the acute attack, even though muscle weakness is not obvious. A muscle can lose up to 50% of motor units and still test as 4 or 5, but the remaining motor units are working harder and longer. A muscle testing as 5 may have

only 75% of motor units as a non-polio, and a 4 may have only 40% of motor units as a non-polio. So even very mild cases can and do develop the late effects.

about fatigue…

I think most of us can relate to delayed fatigue. We overdo on good days and then are sidelined for several. It helps if you can identify right when the fatigue starts and stop for a rest before you reach the “point of no return” (easier said than done). Here are a few ideas:

1. Stop when you feel a little tired. This sounds simplistic, but most of us were taught to ignore

pain and fatigue, so we don’t notice until the fatigue overwhelms us.

2. Decreased quality of movement. Stop if motions that are usually done smoothly develop a

tremor or become shaky.

3. Decreased quantity of movement. Stop if your range of motion declines while you are

working.

4. Stop if you start using compensatory motions. For instance, you start having to “hunch” your

shoulder in order to raise your arm, or your leg starts swinging out to the side instead of

flexing at the hip when you walk.

If you stop in time, you can usually resume the activity after you rest for a while (you may need more than one rest period). This is much more productive than being out of commission for several days afterward.

about scooters…

Each vendor only carries certain brands of wheelchairs and/or scooters and naturally want you to buy one of theirs, so do some research and find what’s best for you.

I am on my third electric scooter and have some suggestions about features to look for.

1. A sturdy base which can’t be tipped over.

2. The brakes should lock automatically as soon as you stop (no hand brakes).

3. Make sure the tiller is not stationary and can easily be pushed forward out of your way.

4. Armrests which can be pushed up or down (no fixed armrests).

5. Enough power to go up steep inclines.

6. Large enough tires (tyres) to go over rough terrain. Test various models outdoors on many

different surfaces in addition to testing inside your house.

7. Can your hand operate the tiller while your elbow is supported on the armrest – if not, your

shoulder muscles will become fatigued.

8. Practice getting on and off different types of seats. Although most brands have swivel seats,

I found that bucket seats were difficult for me.

about joint replacement…

One contraindication to joint replacement is weak muscles around the joint. You need strong muscles for a good result.

For information on energy conservation visit Grace Young’s web site

http://www.reocities.com/HotSprings/4713/

Grace R Young, MA OTR, 5394 West Fedora, Fresno, CALIFORNIA, 93722. United States of America. Tel:- 209-275-4014 Fax:- 209-277-5704 by arrangement.

Several of Grace Young’s articles, originally published in peer reviewed medical journals, can be found in our online library. See the catalogue entry for Young, Grace R., MA, OTR

MRI Scans

Magnetic Resonance Imaging, MRI, is one test that you are likely to be offered. Firstly check around and see if there are any sideless MRI and CAT scanners in your area. Some Polio Survivors do not like to be in closed-in areas. They like the window open at night, like the air blowing on their faces when travelling in cars, do not like wearing tight clothing round the neck. This fact may therefore make this particular test a daunting experience. From personal experience and from reading the many stories on the Internet, I offer you the following suggestions which I wish I had been given prior to mine.

Talk to your GP about you concerns and ask him to let the Unit know. Maybe they have an advice leaflet you can read. You are not being a wimp admitting that this. Maybe it could be arranged for you to go and see the machine.

Suggestions on the internet, are to tell the staff how you feel. Ensure that you are comfortable as the test takes some minutes. Take a favourite cassette with you, or ask them to tune the headphones in to your favourite radio station. You can still hear the staffs voices over the headphones. Ask them to let you know what they are doing. Maybe take Margaret from Florida’s suggestion…

Try spending a million pounds…..

STOP PRESSFrontline Journal for Physiotherapists 21st January 1998Small article giving information of the Lincolnshire Post Polio Network has already produced three enquiries from Physiotherapists for information.

Jackie Dearing, MGCP. BABTAC.32 Chiltern Road, Lincoln, LN5 8SEFully Qualified Aromatherapist, Reflexologist, Masseuse, Beauty Therapist,Hairdresser and Dressmaker.For appointment or information Please Phone 01522 545816 Discount for LincsPPN members.

I know I have PPS when:

• I go to bed at night and discover that my night-gown or pyjamas are in another room, so I

heave a sigh and rather than spend the energy to get the night clothing, I opt to go to bed in

my undergarments.

• As I walk with crutches or wheel down the street, I spot a $10 bill on the sidewalk. I am too

tired to pick it up.

• I spend time teaching the cat how to use a can opener so it can get its own food.

• I teach the dog to lick the stamps and envelopes of my outgoing mail.

• I ask for a fork instead of chopsticks when I’m in a Chinese restaurant.

• I’m too tired to lift my head, so my spouse always kisses me on the forehead.

• I press the “delete” button before I even read the Polio Digest.

• I now cook macaroni instead of spaghetti because I can’t cope with the long, stringy,

unmanageable pasta.

• I never buy shoes with laces any more – just slip-ons.

• Instead of taking half a day to do nothing, it now takes me all day to do nothing. Added by

Kathy – and I have to rest up the next day from the exertion!

• I avoid drinking liquids so I won’t have to clamber out of my recliner to go to the bathroom.

• I have learned a new way to wipe up spills – drop a towel on the floor and rub it over the

spill with my foot. Then push it into a corner for someone else to pick up later.

• I only buy paper-back books.

• I use the magnet (for pain) to drop on the floor and pick up the paper clips I drop at work, so

that I don’t have to bend down to pick them up.

• I use a curved toilet brush to wash my back, honest… it’s just the right shape and nearly like

a loofah.

• I only buy non iron clothing.

• I use my walking stick to get items out of cupboards.

• I can shut my eyes and imagine myself back walking back downstairs to where I was so that

I can remember what it was that I came upstairs for.

• I lay out my outfits for the week in advance so I don’t have to make any early morning

decisions.

• I wash my hair in the kitchen sink so I can rest my arms on the drainboards.

• I shop at the closer more expensive market rather then drive the few extra miles for better

prices.

• When I count my change and drop some I just leave it there rather then try to pick it up.

• I wear winter gloves when pumping gas, (petrol) even in the summer because my hand gets

so numb and cold.

• I decide to move to the desert so I never have to see snow, leaves or grass again!

• I turn down an invite to dinner at a Chinese restaurant because I know I’ll fall asleep in their

birds nest soup.

• I would rather eat nails than sit through the entire showing of Titanic!

• I tell my spouse or family and friends that they never have to worry what to get me for a gift

– all I ever want are gift certificates for a massage!

• I decide to make myself a healthy breakfast – I prepare instant oatmeal and leave it to “set” a

few minutes. I return at lunch time and realize it’s still sitting there! (brain fog)

Isn’t it great to know we are all doing these things TOGETHER.

Brain Fog – a term used by Polio Survivors to explain why they can’t remember why they started a conversation or what the word they want to use is, yet have no problem telling you what it means.

Central Fatigue (Brain Fog) may affect some people at some times more severely than as described above, i.e. it may impact thought processes not just memory. For example, it’s not just words that are forgotten but the abilty to order your thoughts is reduced. LincsPPN Web Administration.

The above was started by Viola Pahl, with additions from Kathy, Jean and Abby. Viola Pahl <violapahl@iname.com>

Kath Easterday <tomkat@LINKLINE.COM> Jean Tapper

Abby Saulino <ASaulino@AOL.COM>

INCREASED WEIGHT AND PPS

People who have PPS tend to move around less but perhaps eat the same amount of food as before not realizing of course that this puts on weight because less calories get burned up. With polio people, it is twice as hard to lose weight, get over illness, recuperate from illness etc., as it is for a normal person. This information came from my doctor and from my own personal experience. I used to be extremely active physically before PPS set in but then it hit me and I got scared and luckily did the correct thing of cutting back on activity. The only drawback of course was putting on extra weight. It is taking me a long time to get the pounds off me as I cannot exercise strenuously.

Dagmar

birdman <birdman@CMC.NET>

I was told to check suggested serving size…and then to put what I thought was that size of the item [like ½ cup of rice] on a plate. Then, measure out exactly the portion called for and put that on the plate. The comparison right there might surprise you. I’m not one to measure or weigh my food, but doing that for a week is an eye opener. I’m a bit too generous with my portions.

However, my problem is lack of incentive. found I have had to give up so many pleasures since PPS that eating good food is one of my few indulgences that I have left. I know I can maintain if not lose weight if I am very careful with what I eat. And yet I have such a hard time being disciplined enough to actually get results.

* THE NAKED TRUTH ABOUT DIETING *A great way for us to lose weight is to eat naked in front of a mirror. That way restaurants will almost always throw you out before you can eat too much.

Can anyone speak Finnish?Seppo Utriainen of the Finish Post Polio Association has sent us a copy of their 55 page magazine Poliolehti. It’s all in Finnish. Anyone help? Thank you Seppo.

Tip for Leg Brace (calliper) wearers.

I wear a right long leg brace and it has never exactly opened by itself but before I had the leather knee joint guards put on the brace, my pants (trousers,) skirt etc., would keep it from catching all the way. I would not be aware of it and sometimes my brace would bend and I’ll fall. After the guards were applied I don’t have that problem now. I always listen for the “click” and if I don’t hear it; I’ll pull it again until I hear it. I’ve broken both feet in the past 5 years and can’t be too careful.

Barbara Robinson

<brobin@network-one.com>

Surveys on Post Polio SyndromeWe have been sent some copies of three surveys from Medical Professionals in America. They relate to the incidence of anxiety and depression – osteoporosis – and for polio survivors still working. If any Polio Survivor would like copies, to be returned direct to the medical professionals themselves, then ring or write.

The Twelve Gifts I Wish for you In this special season

and all the year through

Happiness. Deep down within. Serenity. With each sunrise. Success. In each facet of your life. Family. Beside you.

Close and caring friends. Health. Inside you.

Love. That never ends.

Special memories. Of all the yesterdays. A bright today. With much to be thankful for. A path. That leads to beautiful tomorrows. Dreams. That do their best to come true.

Appreciation. Of all the wonderful things about you. God bless you all.

Rev. Karen Utz – popette@mail.twd.net

Sylvia in Welling, Kent, UK dictated the following stories

Some 30 years ago my mum and I were invited to dinner at a friends house opposite to ours. It was winter and it had been snowing. They said dress up nice and we will do the main meal, you do the sweet.

Gateaux would be nice I thought and I spent £3.00 (US$4.80), a fortune in those days, on ingredients. Four layers, cream and fruit in the layers and more cream and fruit on top. Licking my lips even thinking about it again. It looked wonderful. So mum and I were ready and off we set across the road. Dressed all posh in long skirts. Carefully does it across the road because of the snow, mum opens the gate and off I set up the path. Lynn and Rick have opened the door…. yes, you guessed, my legs gave way and down I went on my knees, and desperately I tried to save the gateaux, but splosh it went on the lawn…. the cream coming out sideways…. I called myself all the stupidest silly….. (that’s the way I cope and then I get the giggles) Here I was in a long skirt with a wet bum… mouthing expletives, my mother standing behind me bless her heart, shocked at her daughter using this language…. Lynn and Rick were standing at front door howling with laughter and trying so hard to apologise for laughing but they said it was like watching a slow motion film…. and that the look on my face was unbelievable…

We managed to get two layers onto a plate and had this for sweet. We looked out later and the birds and a cat were having a wonderful meal, so my £3.00 was not all wasted.

Another time…

I was going to visit a friend but I had no car so I caught the bus to Erith in Kent. Picture the scene, a queue of folks just left work at the bus-stop opposite and an elderly gent passing by, cloth cap on head.

As I got off the bus my legs went, I went round in a circle and grabbed this poor old man pushing him to the ground and I ended up sitting on his shoulders. The bus conductor could not stop laughing, even though he was trying hard to keep a straight face. I could not get up, so the bus conductor got off the bus and lifted me off this poor old gent. Was he injured, angry, upset? He did not seem to be, all he kept saying was ‘Where is my cap, I can’t find my cap?’ He must have been 60 and I was only 30 and all he was concerned about was his cap, not worried about the fact that I was sitting on top of him.

Another time…

Again a long time ago, well I am nearly 70 – oh and I don’t feel 70, I still feel 21 in my head, but my polio surviving body some days makes me feel 90 – well, there I was waiting to cross the road, it was icy, and my work colleagues used to help me walk across the ice… well, there was this fellow and he was coming across the road towards me and (she is laughing so much now that I can hardly type for laughing along with her) and you know the sand dance, well that’s what he looked as if he was doing. One leg forward, and one back, hands all over the place, trying desperately to save himself from falling. Well, I could not help laughing, he was nearly doing the splits and I laughed so much I wet myself. The two girls with me that were helping me across the road thought I was wicked, they were trying to help me and I dared to laugh at this poor man, they were so embarrassed. I was not laughing at him, but having a disability myself and having been in that situation many times, I was laughing with him.

Editors note. Sylvia has a sister in Minden, in the Haliburton Highlands, Ontario, and is going to visit her for a month later on this year. I mentioned this on the Internet that night and Marcia, Margaret and Elizabeth, all living in different areas of Ontario, hope to meet her and introduce her to many polio survivors. Sylvia can’t wait to hear your stories and bring back photos and information.

Rosemary Burrows Does anyone remember me?

Rosemary Burrows, aged 5, Wymeswold near Loughborough, Leicester in 1947…. think it was the Summer of 1947 that I contracted polio and went into Harlow Wood. I had my left leg affected and remember having a bandage tied to my foot and I was supposed to be moving it a lot, but I got tired of doing it. I would love to correspond with anyone from that area, or who went to Harlow Wood as I can’t remember much at all and I would love and value someone else’s impressions.

Me now, well I am married to Rolland Roy and I now live in Victoria, British Columbia, Canada and I am now aged 56. I had to give up work in 1990 due to fatigue and increasing weakness, now happening in my arms and “good” leg.

Rosemary rroy@islandnet.com

Suzanne Rourke, Cairns, Australia.

I am so pleased to have been able to get in contact with you all. In less than 1 week feel like I have made firm friendships I never would have believed possible. Thank God for this wonderful Internet invention, and for all you caring PPS people. Life is going to be so much more enjoyable now we have contact outside our group. In Cairns we are virtually isolated from the rest of Australia. Now we can converse with South Africa, the U.K., the States and the rest of the world. Its mind boggling, though a very comforting feeling. I would just like to say a very warm hello from David and Lois, ‘Ned’ Kelly and his wife, Margaret, Cynthia, Cheryl and from the rest of our Nth. Far Queensland group. Am looking forward to communicating with you all.

suzie97@cairns.net.au

My visit to the UK – John Bennett

I rented a Toyota Corolla from Wheelchair Travel in Guildford, Trevor Pollitt (wheelchair.travel@cableol.co.uk), for the period 4 Sept.- 18 Sept. The charge was £578 for 14 days, + £28 for delivery at a hotel near Heathrow on the 4th, + £28 for return including a ride to Heathrow on the 18th. This is expensive compared to the normal Hertz rental, but Hertz (or other agencies we checked) no longer rent cars with hand controls in the UK (though they and all the other agencies do in the US.) There was no mileage charge for the 1600 miles we drove, though we

paid for petrol (a substantial expense). The car was fine, and the service was good.

We read about accommodations and B&B’s in the book “Accessible Holidays in the British Isles” (ordered by fax from Holiday Care). Given our itinerary, we stayed for the most part at Travel Inns and occasionally at Travel Lodges. Both chains have rooms that are generally well set up for wheelchair access.

We were able to make reservations and enjoyed staying at the Scatterbrook Farm, Hinam Cross, Dulverton, Somerset for three nights (p. 261 in the book). The roads up steep hills from Dulverton are not for the faint of heart (paved, one lane, no room to pass for the most part), but Jill and Harry Aldridge are friendly and accommodating hosts. I used the accessible shower. The house is on a power generator that shuts off at about 10pm (battery operated bedside lights), so (as the guide books say), “check for special arrangements before booking” if there are such requirements.

I am a fan of restored steam railroads, and we rode the West Somerset at Bishop Ledard and the Bluebell at Sheffield Park. Both lines were wheelchair accessible, and the personnel were friendly and helpful. We also visited abbeys and cathedrals at Tewkesbury, Hereford, Gloucester, Exeter, Salisbury, Winchester, and Canterbury. They were (for the most part) accessible, and people were helpful with parking and with finding the way around.

At the Greenwich Maritime Museum in East London the lift to the store was in operation, but the lift to the museum itself was unfortunately out of order. We found the Victoria and Albert quite accessible.

It was a great trip, and thanks for your suggestions that assisted our planning. If I could look up things here via email messages, I would be happy to see if I could assist people from the UK with information on access in our area.

John Bennett 3643 Justine Drive, San Jose, California, 9512 USA

71214.1753@compuserve.com

Why We Can’t Get Any Better – Jon Schoen, Polio Survivor

Science is dumfounded. Age, depression, fatigue and the inability to find solutions, is bringing our improvement to a standstill. It is a much larger picture than we want to admit. The uphill battle is beyond our single minded conception. This is the ultimate form of denial, that we just can’t change things. Education has always been the answer, since the industrial revolution. We are retarded in the confines of age and endurance. Hobbled bodies may never improve and the odds are they’ll worsen. We are not equal in this battle for the strong to come to our aid, so intelligence will prevail. With the resources spread so thin, the weakest will suffer intensely, because the powerful minds don’t look back. Does this all seem negative and irrational? Well it is and it isn’t. For the individual with faith in a higher power, looking over us, it’s fact and reality. For those with no faith in a higher power, you have to certainly deny these facts and call them irrational.

PPS people have ‘A’ personalities, which is counter productive to pacing, resting, learning and peace of mind. Here is one list of characteristics found at the Strong Institute web site:

http://ourworld.compuserve.com/homepages/strong_nlp/STRESS.HTM#person

The above site no longer exists at the specified server. LincsPPN WebAdministration – 9th January 1999

Could you be the ‘A’ Type personality?

1. Move, walk, eat rapidly….

2. Hurry others when they are talking…..

3. Impatient in traffic, restaurants, queues, laborious tasks…..

4. Feel guilty when you relax…..

5. Challenge anyone else who is competitive…..

6. Work to very tight schedules…..

7. Often do more than two things at once…..

8. Complete others’ sentences…..

9. Impatient when rare events happen….

10.Take over conversations…..

11.Frequently pound table or hand to make a point…..

12.Belief that success is dependent on you getting more done faster….. 13.Often clench your jaw or grit your teeth…..

14.Fear of failure…..

15.So busy accumulating, no time to just be…..

16.Judge yourself and others by accomplishments rather than personality traits….. 17.Emphasis on key words in your sentences…..

18.Evaluate your accomplishments and those of others in numerical terms….. 19.Inability to accept limiting personal defects or emotional problems…..

20.Take over others’ work because they are not completing the tasks fast enough…..

This is one thing PPS people have control over, the ability to change. Type’A’ behaviour will bring us to the mercy of Post Polio Syndrome at such an accelerated rate, we can’t imagine, rendering us useless to our family and support circle. We all know the answer. How many times do we tell others to slow down, pace, rest and be good to our inner selves? Why can’t we seem to do it for ourselves? One reason, it is terribly hard to give up control. We feel this is all we have in a complicated, competitive society. Our thoughts are:- if the glass ceiling isn’t broken today, I will never have a chance. Maybe one more push, with all my possible strength, will break through the confines of Polio.

In our process to keep this control, unconsciously we hurt others, who should be partners in conquering a dragons hold. Rather it be an overbearing desire to show our capabilities, or isolation into small groups critical of the disconcerted selves who want answers now.

We do things many people impose on the weak, like isolating the less intelligent and make judgements of emotional character. Patience is not a virtue, so mainstreaming anyone with less than tolerable finites is difficult. In simple terms, our nerves are shot, so we can’t allow the childlike into our circle. We form groups of closed minds to the very ones we should hold up and give the most care to.

I am guilty. My simple desire for recognition and love makes me do things that keep people down, not recognizing the wearing of my soul into disconnection of human needs. The fact I may be more creative, or intelligent than others, gives me pride of superiority. Not being as smart as others, especially the young, mentally strong, makes me hateful and depressed. The mere fact that time worries and controls me, makes my body hurt more than it would. Muscles tense at the thought of the work before me. Fatigue sets in, before I can start the battle to a material security, which doesn’t even exist.

This is the double edged sword we have to live with. Wanting more than the average person to succeed, but nerve endings, muscles, minds and endurance that couldn’t possibly be competitive. If I only see these things, accept them, let god take control and hold out my hand to those brothers and sisters who need what I can offer, then I am more fortunate than any Totally Abled Bodied Person alive. I am very lucky, being forced by a terrible disease to see how salvation can be achieved. Looking deep into myself and others, I can find the good souls shine through. Giving up the need to criticize my family and friends can be a relief. Forgiving the worst of PPS emotional reactions is freedom for the hidden mind.

Could it be we are asking for the wrong thing, in wanting a haven away from stress and difficulties?

Is it possible the haven, peace and solitude is right in front of me? Letting my mind be free to enjoy the good in others could just be the answer. This is not me today. I am compelled to lash out, again, at those who seem to thrive on domination and hurt. If there isn’t pain, many look for it, like it’s a habit of mental need. It can be like a daily fix, for finding trouble, before it finds us. We want to root out evil, even if it doesn’t exist. Compelled to get even, for the oral and mental lambasting inpuned upon us, feeds hate. Eventually we need to feed this desire, increasing our pain, confusing ourselves worse, obscuring any good in others whatsoever and sapping what little energy left in not so pretty bodies.

To achieve half of the cure for PPS, it doesn’t cost a dime. When many of us get better, we can pull the others up. With clear minds the battle can be won, not through blind fighting, but personality changes. There is a good chance many have had so few kind words, the light will scare us back into ourselves.

We are certainly not the first people facing such challenges. History is fascinating to look at, but god knows we wouldn’t want to be there. With a higher power taking care of the things keeping us apart, we can grow for each other. Let go, it’s the only way.

Jon A. Schoen

My memories of the day that London was silent – 6.9.97.

I was in the Lane Fox Unit at St. Thomas Hospital on the day of Princess Diana’s funeral and I have never experienced anything like it before in my life.

The Lane Fox Unit is right by Westminster Bridge Road and the Houses of Parliament and the silence in London was incredible. You could actually feel the silence. It was so… I cannot describe the feeling, it was uncanny, all we could hear was the birds singing…… it was tangible. It affected everyone. You could see people walking across the bridge but you could hear nothing. Even the river seemed as if it knew, you couldn’t even hear the lapping of the waters of the River Thames. Our whole unit was in silence. When the nurses came on duty, they whispered as they spoke. They told of stations closed, and no trains, and London so full of people yet so quiet, and the sadness and the silence. The hospital had few visitors and those that came whispered too.

I was not able to go to the route of the funeral but experiencing this really made sure that we were part of it. A day in my Polio life that I will remember forever.

P.S. I am a young 69 with a body that still wants to be 21 when PPS will let it. I am still involved in many voluntary projects and would love to hear from other Polio Survivors in my age range, which means anyone. Being able to talk to other polio survivors is the best medicine I have found for PPS, it really lightens the load. I am not alone anymore.

Sylvia Fortune, Welling, Kent.

Computer CD on Post Polio Syndrome available from the

Gazette International Networking Institute (G.I.N.I.)

co-ordinator of the International Polio Network and the International Ventilator Users Network 4207 Lindell Boulevard #110

Saint Louis, MO (Missouri) 63108-2915 USA Tel. 314/534-0475 314/534-5070 fax

gini_intl@msn.com

Annual General Meeting – Details still being finalised for April. Members will be notified by post shortly.

LINCOLNSHIRE POST-POLIO NETWORK Registered Charity No. 1064177 Articles for publication by March 16th please – Publication date March 25th 1998 MEMBERSHIP for this financial year is £10.00 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

info@lincolnshirepostpolio.org.uk

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin989.html> Last modification: 5th February 2010.

Last information content change: 11th April 2009.

Linc Pin Volume 1 Issue 9 Read More »

Linc Pin Volume 1 Issue 8

THE LINC-PIN

Issue No. 8 – November 1997

WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/ Registered Charity No. 1064177

CONTENTS

Promoting the Awareness

that Polio Survivors are experiencing new medically noted

but otherwise unexplained symptoms is of paramount importance

to the wellbeing of Polio Survivors not only in the UK but around the World. Every time we speak to a Polio Survivor, and see the look of relief on their faces,

see their frowns disappear and hear the words, ‘You mean I am not the only one,

other Polio Survivors are having the same problems, there is a possible explanation for my symptoms, I am not going barmy, its not all in my mind. You have information that I can give to my doctor, that might explain all this….

We know how they feel, 50% better immediately, How do we know?

Because that’s how we found out as well.

If you can help us in any way, with introductions to anyone in the media

or medical professionals; with practical help here in Lincoln;

with financial help by way of sponsorship or grants; then please get in touch

and help us help the Doctors put the smiles back on the U.K’s 250,000

and the World’s 12,000,000 Polio Survivors faces. CONTENTS

Editorial

Let’s Sleep With Our Nightmares and Follow Our Dreams Sunny Roller, M.A.

Post-Poliomyelitis Fatigue Where is the Lesion? The Controversy – Three Points of View Dr.

Cashman, Dr. Bruno and Dr. Miller. A report of a special Neurology Rounds at the Montreal

Neurological Institute And Hospital September 26, 1997.

Dr. Neil Cashman Answers Members’ Questions Polio Quebec AGM – September 1997

A Good Idea – One we could take up.

My Gorilla and A Creed To Live By Verse

Australia

Snippets From PPSers Around The World

Letters to the Linc-Pin

Do Stiffened Red Cells Have A Role In PPS Symptoms? Dr. Les O Simpson, Dunedin University, New Zealand

Weather Report for Christmas

Survey of Anxiety Symptoms & Depression among individuals with Post Polio Syndrome

being undertaken by the Dept of Psychiatry of the Medical College of Richmond, Virginia

STOP PRESS

Our Contact Information

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

Lincolnshire Post-Polio Network

Seasons Greetings to all (editorial)

So much has happened since our last newsletter its difficult to know where to start. I was still putting newsletters into envelopes on the way down to Gatwick Airport in the early hours of the 5th September prior to flying to the States, and if by any chance you did not get your copy, then sincere apologies and if you care to ring one will be in the post to you straight away. LincsPPN members not on the Net will find the story of my travels enclosed.

This newsletter contains more information from around the World and we hope you will find it informative. Our Web Site continues to grow, especially the Online Library. We would particularly like to thank a small group Americans for their generosity in providing finance for a new high spec computer to assist the LincsPPN in improving it’s Web Site even further. It will be used by our Vice

Chairman and Web Site Administrator, Chris Salter, to automate and/or speed up many of the administration tasks involved in operating a web site. However, we still urgently need more donations to fund improvements in all our services including our Web Site and to cover day to day operating costs of those services.

For non Internet members we have included a complete list of all the full text medical articles currently in our online Web Site Library and will provide list updates in subsequent issues of the Linc-Pin. A small selection of those articles have appeared in past issues of our newsletter and we will continue to include a number of medical articles in each new issue. However, if you would like copies of any specific articles from our Web Site Library then send a large self addressed envelope with the appropriate amount to cover the cost.

US Bank Account and Treasurer – We welcome Denise Mealy from Ohio, USA to our Team. We now have a non-profit Dollar Account in the States and Denise has kindly agreed to oversee this account and will be liasing with Jean Tapper our UK treasurer. This will save us exchange rates for transactions where we need to pay in US$, and we are already receiving US$ checks as donations and for payment for Dorothea Nudelman’s autographed book ‘Healing the Blues’ into this account.

The Atlanta Post Polio Conference in the USA was very good and I had hoped to do a report with this Newsletter but the Conference Tapes I ordered have not arrived yet. I did not take notes at the six workshops and two keynote speeches so as to be able to concentrate fully, and as with most Polio Survivors my memory is not what it used to be, and I need to hear the talks again to do them justice. Sonny Roller MA, and Dr. Fred Maynard of the University of Michigan gave the keynote speeches and Sonny – a Polio Survivor and Project Manager of the Wellness for Women with PPS Project – has kindly allowed us to reproduce her speech in this issue.

Canada – Sally Aitken from Polio Quebec has given us permission to use information from the recent Grand Rounds at the Montreal Neurological Institute and Hospital with Dr. Neil Cashman, Dr. Richard Bruno and Dr. Robert Miller and the Questions and Answer session with Dr. Cashman at their AGM…. Australia – we are now in touch with four PPS support groups…. New Zealand, Dr. Les Simpson has contacted us, see his article… Finland, Seppo Utrianen has contacted us…. and we have been contacted by doctors and polio survivors in London, Canada, India, Pakistan, Italy…… letters and emails arrive daily. Come on English readers – Medical Professionals and Polio Survivors – lets here more from you please for our next newsletter.

Hilary Hallam

Let’s Sleep With Our Nightmares and Follow Our Dreams Sunny Roller, M.A.

Project Manager, Rehabilitation Psychology and Neuropsychology Department of Physical Medicine and Rehabililation,

University of Michigan Health System

Room 1G2O2, University Hospital, Ann Arbor, MI. 48109-0050 Keynote speech given at the Atlanta Post-Polio Conference,

“Been There, Done That, Movin’ On” in Atlanta Georgia, September 12-14, 1997

This presentation is dedicated to my Dad who passed away 2 days ago.

Good Morning. I’d like to begin by introducing you to the man who has been my partner in the postpolio experience for the past 12 years. Dr. Fred Maynard is my physician. He is the one who had to

give me the desolate news in 1984 that I had post-polio syndrome and that there was no cure. Five years ago he faithfully saw me through the onslaught of a broken leg and 9 months of careful rehabilitation. He also dragged me through the transition from walking full time to using a wheelchair more often. But even more important, he taught me over the years that health means balance in my daily life and that my own creativity and flexibility were the two qualities that would help me achieve balance and wellness. His openness to new ideas – especially my ideas, along with his ingenuity and his compassion as my partner in wellness have made him the most influential person in my post-polio healing and growing process. I have asked Dr. Maynard to take part in my presentation this morning because as my physician-partner, his contribution to what I want to share with you is natural, essential and pertinent.

The title of our presentation today is “Let’s Sleep With Our Nightmares and Follow Our Dreams.” Living with polio for 40, 50, or 60 plus years has filled each of our lives with a generous supply of both nightmares and dreams. I believe that from time to time it is important for us to reflect on our very private nightmares and dreams, if we are to live an abundant and healthful life in the years ahead. As we take time consider this dual challenge today, thinking about following our dreams or being led by our hopes is one thing. We’ve been doing that successfully for years, but sleeping with an array of nightmares – now that is quite another thing! How could I suggest such a thing? Well, let’s stop and contemplate. Maybe I shouldn’t ask, but have you ever slept with a nightmare? Well, I’ll tell you a secret, I’ve slept with a few horrible nightmares during the course of my adult life and I highly recommend it. It can be liberating, rejuvenating and VERY good for your mental health!

In order for you to more clearly understand what I’m trying to say, I’d like to share a children’s story with you. You probably know it. It’s called There’s a Nightmare in my Closet by Mercer Mayer… (Editors note, Sonny then showed slides of the different pages)

“There used to be a nightmare in my closet. Before going to sleep,

I always closed the closet door.

I was even afraid to turn around and look. When I was safe in bed, I’d peek… sometimes.

One night I decided to get rid of my nightmare once and for all.

As soon as the room was dark, I heard him creeping toward me. Quickly I turned on the light and caught him sitting at the foot of my bed.

“Go away, Nightmare, or I’ll shoot you.” I said. I shot him anyway.

My nightmare began to cry. I was mad …

but not too mad.

“Nightmare, be quiet or you’ll wake mommy and daddy,” I said. He wouldn’t stop crying so I took him by the hand

and tucked him in bed and closed the closet door.

I suppose there’s another nightmare in my closet, but my bed’s not big enough for three.”

The late effects of polio started for me about 15 years ago. It was at that time that the monster that I called polio came out of my heart’s closet and scared me half to death. All my life I had been running away from the nightmare. I was living in spite of my polio, not with my polio. As I was growing up with my nightmare monster called polio, my mom would tell me I was a normal girl who just walked a little slower than everyone else. She also told me that a wheelchair was not acceptable in our house. A wheelchair would make me feel sick and I was not sick. I remember as a

4-year old the unique stench of hot wet wool in the hospital those Sister Kenny hot packs. I remember the fear and pain when a nurses aid accidentally scalded my leg with one of those hot packs and I had to lie limp and take it because I couldn’t jump away. I was completely helpless as [a] paralysed little girl under her outreached arms. I remember being accidentally dropped off a stretcher into a huge tank of water by the therapists and almost drowning at the age of five. I didn’t want to swim again until I was in high school. I remember complex orthopedic surgeries when I was 7 … when I was 11, 12, 13 and 14. Bedpan after bedpan after bedpan – cold, white enamel. Black cat gut stitches in my leg skin. Ether that made me vomit over and over. Mom and dad walking away leaving me to lie there in the bed sheets by the window week after week after week. They bought their first car so they could come and see me across the city. But I couldn’t go home with them. They just left me there every time. I remember being trapped in the prison of those old inner city hospital buildings. And I had to take it. Rooms with white walls … metal frame beds with side rails that were arbitrarily clanked up around me … windows that looked out onto brown brick walls. I remember the hospital sound of long lonely boat whistles on the Detroit River as I lie awake gazing from my bed through the screen window into the dingy inner city night. I remember a little girl in the bed next to me who had been burned from head to toe. She was in agony. She screamed in such pain. A little boy had set her on fire as she was swinging at the playground. I never saw her face. I remember the creamy complected teenage girl with long shiny black hair who was forced to lie in the bed next to me stuffed into a hot, unmoveable, itching full body plaster cast all summer long.

In a book by Tony Gould, the voices of other children and adults with polio herald their old monsters:

Jean remembers her experience as an 11 year old girl: “I was put in a bed on the second floor. A nurse came in and gave me a plate with spaghetti on it, and I was totally paralysed, except I could move my right hand and my left foot. And I could breathe all right. She said, ‘We’re not going to coddle you here. You’ll have to eat your dinner. And I couldn’t reach it. There was no way I could even get one strand of that spaghetti. I’ll always remember that. And she came in and took it away.

As she grew into womanhood Jean describes another nightmare: “In this kind of culture – in most cultures – men like perfect women; they like their arms and legs to match. And that was quite a shock to me, because I still thought of myself as quite a catch! And yet I came out into a culture which gave me much more resistance. Right away, you knew where you stood with men and it was just devastating. I mean; it was terrible. And nobody ever talked to me about it, nobody ever said, ‘this is what you should expect.”

Lennie who got polio in 1944 mentions the hot pool therapy he enjoyed but the salt tablets he had to take: “Even today, more than four decades later, I still shiver at the mere thought of those salt tablets. Sometimes the hospital orderly would literally have to pry my mouth open to force me to swallow them. dreaded the nausea that the taste of salt inspired in me.” He goes on to describe getting his first pair of double long-leg braces with a pelvic band: “At first, all I could feel, as I stood hanging like dead meat on the shoulders of John the Barber and Charley the Bracemaker, was a sudden surge of new consciousness, frozen for a moment, in a dark corner of my terror. The legs are dead, it whimpered, boring into some quiet alley of my twelve-year -old mind.” In many ways, we were American children who suffered atrocities like concentration camp victims in the 1940s and 1950s.

That was during the first half of our lives. I recovered, went to college, taught high school English for 10 years and began to work on my Masters degree. Then, As a woman with the late effects of polio 30 years later in the mid – 1980s, with new pain, weakness and fatigue. I was reluctantly forced to return to a hospital building to see Dr. Maynard. I had to smell the old smells, witness the therapists and nurses and watch the sick people who were lined up in the hallways in wheelchairs waiting for their next treatment. I was compelled to face those old fears and nightmares of

childhood. It was totally horrifying. I was told to use a wheelchair. God no! I was told swimming was the best exercise for me. How ironic! I was told that I had some fine skills to offer to other polio survivors, but I would have to come to the hospital building to work everyday and interact with the nurses aids and therapists. I had to return to my old prison. The thought was repulsive. But my whispering intuition told me I needed to do this … that it was time to reframe my old memories from the vantage point of a reasonable adult. Old nightmares needed to be yanked out of the closet and intimately embraced. And as many of us continue to experience the late effects of polio there are a variety of new fears breeding … I sometimes worry what will happen to me in five years? Ten years? Will I have to use a wheelchair full time? Will my right hand go dead from carpal tunnel syndrome? Will I develop sleep apnea? What horrible thoughts. But acknowledging these nightmares is my own calling to wholeness. It’s me embracing all that I am and claiming it. I’m not running away anymore. Our fears are real parts of us that grow when we ignore them too much. I remember Dr. Maynard saying that it is important to acknowledge the fears and nightmares, but not get stuck in them! So I need to take time to pay attention to the monsters in my closet. Sometimes in my mind I take one nightmare out separately or in little pieces and set it beside me and I sit very still with it and I observe the creature in detail and see what it looks like, sounds like, even smells like.

I say to the nightmare,”Who are you? Get closer and show your face!

Let me see where you came from! What gives you life? What’s your name? I think I’ll call you Sherman!

What are you doing?

Are you a real fear or are you FEAR – false evidence appearing real? Now that we’re out of the closet and the room is bigger

I see you more clearly in the light. Look! You’re getting smaller

because you are simply a minor part of my whole life and I see that. I can live with you!

You can’t kill me! Sherman, you’re like a tiny bug on the wall. You can’t destroy my happiness!

You’re just another part of my life’s tapestry and I can live with you.

When I really took a look like that at some of my nightmares I even saw for the first time many of their positive qualities and characteristics that I hadn’t noticed as a child. Making friends with our past and current fears can help free us to pursue our dreams for the future. I remember 10 years ago, when I was going to my first GINI conference. I was petrified because I had never been with a large group of people with disabilities. I had spent my time running away from such encounters. As a teenager and young adult I would literally cross the street to avoid a person who used a wheelchair because I didn’t want to be associated with the group in our culture called handicapped. I practically threw a friend out of my apartment one day when she suggested that I might want a job working with people with disabilities. But on a warm weekend in May in St. Louis, Missouri, I made myself leap braces and crutches first into that horrifying situation – a hotel full of polio survivors. After 2 days with hundreds of people who were like me in many ways and unlike me sometimes, I was calmer and saw things in a completely new light. Embracing this embarrassing fear offered me a huge freedom. I don’t race to avoid myself and people like me. I have a choice to join in if I choose. And love it, if I choose! It’s part of that coming to wholeness.

If we aren’t wasting our time being haunted or scared by old nightmares, we can move on to the good stuff in life. We can put the negative behind us or at least next to us and we can say “we’ve been there, done that and now we’re movin’ on”, at least for the time being. What are some of your fears? I bet we all have a few left in there. The nightmare of a doctor’s examining table … the threat of being abandoned … having to wear a brace? What scares you? I’d like to invite you to use this

conference as an opportunity to talk about and confront a nightmare or two. Do what scares you! Learn to manage those pesky nightmares! It can be done. It has been done! As Daniel C. Steere has said, “Life is very manageable. It is intended to be. Life is exciting and positive and rewarding. Life is the most marvellous tool God has created for you. Everything on earth has been put here at our disposal. God intends for you to use life. He wants you to take advantage of all the things he has put here, and to use them as resources and opportunities.

We have a wonderful array of resource speakers here who will give us new insights from their learned perspectives. Dr. Leslie will share information on fatigue and post-polio, Roberta Todd will discuss adaptations and innovations for easier living, Dr. Alba wants to share her expertise on breathing and sleeping well with you. That’s just to name a few! We have an opportunity to discover the most recent knowledge in the post-polio field and then think about how to apply it. Dr. Maynard will discuss his paradigm called the life-course perspective¹ in his presentation tomorrow. His very relevant frame of reference shows us that we have always been adapters with our polio disabilities and we continue along that path even now as we grow older with polio’s effects. Life is a neverending series of adjustments and our highest priority must be to be flexible and adaptive. Adapting is one of the things we do best!

This month I turned 50 years old. This birthday for me has been a reflective one. I have grieved over past omissions and felt pride in many of my achievements. I thought about life before polio, after polio in my childhood and teenage years, and life with the late effects as I mature. I reflected on being part of the polio survivor population in America. I reflected on how some so-called scholars have referred to us as medical dinosaurs. I’m concerned about how so many physicians and therapists are inadequately applying the post-polio information that now exists in the literature. Because they can’t seem to apply it, many polio survivors are still saying that they cannot find physicians that really know how to help. We still feel abandoned and isolated especially in many doctor’s offices. I thought about the important legacy we will leave behind us that will forward all civilized societies – we started the disability rights movement opening doorways for moving and living more freely in the world, we are participating in medical research that will help generations to come, as polio patients we have been the catalysts for huge developments in the field of medical rehabilitation. We have provided many success stories for our parents, employers, physicians, teachers and clergy to tell.

I know that as I commence into the next 50 years of my life, it is my personal vision for the future that will direct me. What dreams do I want to work toward and follow now? What dreams are leading you along your way? I want to flourish in the years ahead! I want to feel economically comfortable and to be very mobile – no matter what that looks like. I want to contribute to my society and make a positive difference in the world. I want to love and help people. I want to be physically and emotionally close to bright, loving people. I want my friends to want to be close to me. I want to do the things I choose. I want to do the things that scare me and feel more free than ever. I want to be pain-free and to stay clever and creative enough to figure out how to get things done during the day – successfully. I hope to stay connected to a large number of resources – people and things. It was great to travel to India, Europe and New Zealand to teach about polio. I want to always feel that life is an adventure and that there is more excitement just around the corner. It was a proud moment when I quit smoking 8 years ago. I want to know more about what wellness is and how to incorporate it into my life. We are developing a program at the University of Michigan called “Wellness for Women with Polio: A Holistic Program Model.” It is a research study to investigate what will help polio survivors optimize our health as we grow older with our disability. I want to live in a constant state of wellness. I want the personal power to grapple with difficulties and fears and know that I will come out a winner. But most of all I want to stay optimistic. I want enthusiasm and hope to be my minute-by-minute companions.

How about you? What are your dreams for the future? Have you any new ones? To accomplish and important task? To be a great grandmother? To travel to Alaska or South America? Have you written them down?

We’re not done yet. We’re never done. Each of our personal stories continue. How we play our story out is our choice and our responsibility. I say bring on the next monster! We know struggle and we know victory. We have created new knowledge about polio’s late effects, when there was none 15 years ago, and merged it with established medical facts. Professionals have now heard of post-polio syndrome. Look around. We have created networks of caring friends and helping professionals. We have individually developed new adaptive skills and techniques in the past and know how to do that. We draw from the wisdom our past generously offers. We also leave behind the outdated and the useless. There is hope and there is help. We are smarter and wiser now than ever before. Remember that last line in our Mercer Mayer story?

“I suppose there’s another nightmare in my closet, but my bed’s not big enough for three.”

Look what Mercer Mayer shows us at the end of his story

“There is always another nightmare to befriend, another fear to diminish.”

I believe that we actually have the power to turn our monsters into genies and to help others based on our important polio experiences. Good things are waiting for us behind the next door.

Let’s sleep with our nightmares and follow our dreams.

¹ Dr. Maynard’s article “Managing the Late Effects of Polio from a LifeCourse Perspective“, Ann NY Acad Sci 1995, can be found in our Library.

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

POST-POLIOMYELITIS FATIGUE WHERE IS THE LESION? THE CONTROVERSY – THREE POINTS OF VIEW

A REPORT OF A SPECIAL NEUROLOGY ROUNDS AT THE MONTREAL NEUROLOGICAL INSTITUTE AND HOSPITAL SEPTEMBER 26, 1997.

The origin of post-polio fatigue is controversial. Thanks to Dr. Cashman’s initiative, there was a respectful discussion about the cause and source of Post-polio fatigue at the Neurological Grand Rounds of the Montreal Neurological Institute on the morning of September 26 attended by physicians, other health-care practitioners, students and a few members of Polio Quebec. The speakers were

Dr. Richard Bruno (Psychophysiologist and Director of the Post-Polio Rehabilitation Research Service, Kessler Institute for Rehabilitation, New Jersey Medical School) spoke about the role of cerebral abnormalities on post-polio fatigue.

Dr. Neil Cashman (Co-Director of the MNIH Post-Polio Clinic with Dr.Trojan)

Dr. Robert Miller (Chair of the Department of Neurology, California Pacific Medical Centre) who flew in for the occasion.

A lightly edited resumé delivered by Dr. Cashman at Polio Quebec’s Annual General Meeting the following day appears below for those who were unable to be with us or who would like to “hear” it again.

“Post-polio fatigue is probably the most common and certainly one of the most disabling symptoms that occur after polio. There is a great deal of controversy in the field as to what is causing the fatigue. The stakes are very high, because if we were to understand what is causing the fatigue then

we could design a treatment or therapy that would help counter it.

“Dr. Bruno has spent a great deal of time working on an idea prompted by early pathological studies done by David Bodean who did post-mortems and found that an encephalitis existed in the brains of people who had acute polio. Because about 10% of those who had polio actually died from the illness, their brains and spinal cords could be examined to try to figure out what the polio virus was doing to the nervous system. We all know that the polio virus affects and destroys motor neurons, or motor nerve cells in the spinal cord and in the brain stem. This is what accounts for weakness and muscle atrophy. What the original investigators were finding, and Dr. Bruno has capitalized on this, is evidence of destruction of nerve cells outside of the motor system. One area that is commonly affected in people who have had polio is the reticular formation, i.e., a group of nerve cells that seem to support consciousness, so to speak. Dr. Bruno has taken this and said – what if there is a post-polio syndrome of the reticular formation, and how would that manifest itself? Dr. Bruno’s theory would present as a disorder in arousal, retrieval, attention, and it may account for some of the troubles people have with concentration, with memory and with fatigue. This is the crux of Dr. Bruno’s argument that, in fact the fatigue that people with PPS have is actually brain fatigue – nothing to do with the nerves and muscles. Rather it is a disorder in concentration and memory. He presented some data that suggests that medicines such as bromocryptine that increase the function of the reticular formation can actually improve fatigue and attention in people with this type of postpolio syndrome.

‘Then I (Dr. Cashman) added that, yes, there is involvement of other parts of the brain and the brainstem, but the obvious and clear area of involvement by polio is the motor neurons, and when motor neurons die, remaining healthy motor neurons sprout extra branches to try to supply the muscle fibers that have lost their branches in the polio – a great recovery mechanism for say 10 or 20 years, but ultimately the motor nerve cell which is designed to support approximately 1,000 muscle fibers may, after polio, support 10,000 muscle fibers. Eventually the motor neuron starts to say this is too much. I can’t keep this stability up forever, and these extra branches begin to degenerate. This is not a motor neuron disease like Lou Gehrig’s disease. It’s at the other end of the motor unit – it’s a terminal axonal disease. The evidence we have of this is from muscle biopsies and a number of electrophysiological tests. We’re certain – I’ll put it that strongly – that there is degeneration of terminal axons. Everyone who has done these sorts of experiments in the world, agrees there is degeneration of terminal axons in PPS. But Dr. Trojan and I have tried to take this a step further. When you think about it, a terminal axon is not normal one day and gone the next. There must be an intervening period of poor function – of disfunction. And this may account for some waxing and waning symptoms of PPS, like fatigue. What Dr Trojan and I have done over the past five years is to collect evidence that there is a problem with the function of the terminal axons. One of the things we found is that one of the defects – one of the ways the nerve terminals are disfunctioning is that they have decreased release of a chemical called acetylcholine. This chemical accounts for the nerve talking to the muscle. If there isn’t enough acetylcholine, the muscle doesn’t get stimulated and doesn’t work properly – doesn’t generate a force. So we have tried to increase the communication between the nerve and the muscle by giving a medicine that prolongs the effect of acetylcholine in the junction between the nerve and the muscle. This is the basis for the use of Mestinon. We believe we have good preliminary results to show that Mestinon does work, and trust this will be demonstrated in the report, to be released in November, of a large multi-centred double blind Mestinon trial. [See preliminary report in NewsBites]

“Dr. Miller, well-versed and very knowledgeable about post-polio syndrome and other neuromuscular diseases, defines fatigue very tightly as a decrease in muscle strength with exertion and a return of normal function with rest. He argued that the fatigue in PPS acts more like muscle fatigue than central or neuro-muscular junction fatigue. He has done studies demonstrating the problem with the role of calcium in the muscle. Calcium is used to stimulate a muscle contraction, and if the muscle depolarizes without the release of calcium, then a good force isn’t generated for the effort the nerve has put into it. He believes that all of these ideas about fatigue, whether it be central from

the brain, at the neuro-muscular junction, or whether it is at the level of the muscle fiber itself, fail to explain the severity of fatigue experienced by people with PPS. His major idea for therapy of this type of fatigue is to engage in exercise. Dr. Miller believes that a great deal of PPS fatigue is due to deconditioning, and that non-fatiguing exercise, or even fatiguing exercise, can lead to an increase in strength and a decrease in fatigue. I find this a bit hard to swallow, (said Dr. Cashman) but given Dr. Miller’s love to run marathons and sailboard in San Francisco Bay at every opportunity, I can see where he’s coming from…. If you’re tired you go and exercise….

“So, there are at least three camps when it comes to understanding fatigue. People are paying attention and doing a great deal of work to understand the underlying physiology of fatigue and post-polio syndrome. The debate has now been formulated. We’ll see which theory prevails over the next few years. It could be that we’re all right. It could be that some people have one type of fatigue and others another type. It could be that we are all wrong.

Video and Audio Cassettes (English only) are available of the Grand Rounds Contact Sally Aitken (514 932 6092) – or write the Association. In UK contact LincsPPN. Prices not available at time of going to press.

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

DR. NEIL CASHMAN ANSWERS MEMBERS’ QUESTIONS

POLIO QUEBEC AGM – September 1997

1. Have you ever considered what the chiropractor can do to help the pains and the general

condition of the spinal cord?

A. I now feel that chiropractic manipulation may be good for some especially if they have acute

lower back pain. A chiropractor may even give quicker relief than a traditional doctor in certain

cases. But I am very worried when people get their necks manipulated. I’ve seen too many

accidents in this context – nerve roots being pinched or torn – actual damage to the spinal cord or

brain stem. I still cringe when there is talk about neck manipulation.

2. (a) When do you decide to prescribe Mestinon to a patient?

A. We think that Mestinon helps with severe generalized fatigue and also with muscle fatigability.

Exert yourself, walk the length of a mall, and you may have increased weakness and have to sit

down to recover your strength. These kind of symptoms seem to be helped by Mestinon. We think

Mestinon improves the communication between the nerve and the muscle. First of all we advise

non-medical ways of treating fatigue: activity planning, changes in life-style. If those don’t work,

we consider trying Mestinon. Even if we prescribe Mestinon, we find only about 60% respond to

it well, so we don’t have a predictive test as to whether a person will respond well or not. When

we have exhausted non-medical ways of treating fatigue, we try Mestinon.

2. (b) Is general fatigue a criteria for the use of Mestinon, or is it more for weaknesses to legs,

arms or for pain?

A. There’s no physiological explanation for it to be effective for pain. Mestinon might have other

uses than just for fatigue, but at present, we’re not smart enough to know how it works, or whether

it can work for pain.

3. Has there been any research/invest into alternative medicine techniques either using herbal

remedies or other healing techniques (Qi-gong)?

A. The use of alternative medicines is a matter of choice for the individual. Although we can’t cure

post-polio syndrome, we believe we can treat some of the symptoms. Be sure you have good

advice before taking them so that you avoid hurting yourself physically or financially. Remember

that nobody has the cure for post-polio syndrome.

4. Do you recommend taking extra Calcium or Vitamin E for PPS?

A. The trouble in the muscle is inside the muscle. It’s not due to not enough calcium. It’s due to the

muscle cell physiology, so extra calcium wouldn’t help there. However, there are reasons to take

extra calcium, i.e., for osteoporosis and health in general, but not for post-polio syndrome

specifically. As for Vitamin E., it is a different story. It is a very potent anti-oxidant, and there is

apparently no toxic dose of this vitamin. So it is safe to take several hundred units a few times a

day. It won’t hurt you. Perhaps it will help. At least there won’t be a side-effect.

5. Should a PPS person do conditioning exercises, sub maximal exercises or maximal

fatiguing exercises, or all three?

A. The role of exercise in PPS is hotly debated at present and is being researched actively. We

used to say that any exercise to the point of pain, muscle cramps or weakness in the muscle was

too much and that it might actually accelerate weakness in PPS. At this point there are people

under carefully controlled research conditions (e.g. Dr. Agre in Wisconsin) who have been able to

show that even fatiguing exercise can result in an increase in strength with time. The conventional

wisdom is “don’t push, it may make things worse.” But there are some cracks beginning to appear

in the conventional wisdom. As for specific advice, do NOT exercise to the point of cramps or

pain or weakness unless you are under some carefully controlled research environment. There has

to be a happy medium between some form of activity and over-exertion. And for the time being, I

think it is best to stay in that happy medium. Don’t just sit and do nothing!

6. What are your thoughts about CPAP?

A. This is a non-invasive machine to assist breathing, especially at night. It can be used if there is

a profound weakness of the respiratory muscles or if the patient has sleep apnea.

7. Elaborate on the role of free radicals in PPS?

A. Tough question which would take pages to explain and my answer is based more on an idea

than on very specific knowledge. Motor neurons appear to be very sensitive to the effects of free

radicals. A free radical is a molecule that can oxidize things in the cell, e.g., lipids, DNA and

proteins and make them not function properly. We found that the motor neuron generates a pulse

of free radicals when it is about to die. If one can block the action of free radicals then you can

prevent or slow down motor neuron cell death. I have wondered whether there is a similar effect at

the nerve terminal which is where we think the action is in PPS. What we think is happening in

PPS is that the hugely enlarged nerve “tree” with 10 times more branches than it was supposed to

have undergoes a loss – a sort of breakdown or PPS pruning. This loss of terminal axons over time

after polio, and why these degenerate is not known at present. A possible mechanism for

degeneration. involves free radicals that they be oxidizing the lipids and proteins in the nerve

terminal. It opens the possibility that some anti-oxidant medicines may prevent or slow down the

loss of terminal axons in PPS. Something as simple as Vitamin E, for instance, might slow down

the loss of nerve terminals in PPS and other related diseases. More work needs to be done.

8. Does the [Canadian] government recognize PPS? Has any progress been made towards

getting compensation for PPS?

A. Yes. We have been able to have people declared disabled with post-polio syndrome. But

applications for compensation seem to be automatically rejected, requiring the appellant to go to

appeal. If you decide to opt for disability with your doctor, expect a battle of between 6 – 12

months, if indeed you succeed.

9. Given that weight control is a problem when mobility is reduced, what advice would you

give given that weight loss is a twofold formula of fewer calories combined with increased

physical activity?

A. The Polio Clinic, through Dr. Trojan at the Montreal Neurological Institute and Hospital, can

refer you to a dietician, a physiotherapist and an occupational therapist. Together they can

recommend an appropriate diet and exercise program.

10. Is there anything new to relieve the feeling of coldness due to polio?

A. Just as there are many reasons for post-polio fatigue, there are dozens of reasons why people

who have polio may experience cold in their extremities, e.g., poor circulation, loss of muscle

mass in a leg. Some reasons may be related to polio, but not necessarily so. I have been doing

some work which is not yet published showing that when one gets nervous or tired or something

similar, there can be prominent constriction of the blood vessels which causes a sensation of cold.

11. Are tendonitis and bursitis a sign of PPS? Are there short-term or long-term remedies? Is

exercising recommended to regain strength?

A. These conditions are often the result of people overexerting for a long period of time. If arms

are bearing weight or being used to get around in a wheelchair, they begin to complain.

12. What impact will Mestinon have on the heart?

A. Mestinon increases acetylcholine everywhere in the body; part of the rhythm control of the

heart is due to levels of acetylcholine at a synapse of the heart. Too much acetylcholine in the

heart causes a slowing down of the heart. This isn’t dangerous; in fact it is barely noticeable. But

people who have had heart disease, either myocardial infarction or a rhythm a abnormality should

consult their doctor before embarking upon Mestinon therapy.

13. How old is your youngest post-polio patient?

A. Fourteen years old.

Audio Cassette (English Only) and Video Tape (English Only) of the above which includes Dr. Cashman’s Annual Report and his resumé of the Grand Rounds on the three possible causes of Post Polio Fatigue are available by calling Canada 514 932 6092. In UK contact LincsPPN. Cost of audio-cassette – $ ; cost of video-cassette (thanks to Mansour Jabbari) – $ are unknown at the date of going to press. If you would like a copy of the Annual Report, please contact the Association. Sally Aitken aitken@accent.net.

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

A GOOD IDEA – One we could take up

A member shared how she came to know about Polio Quebec. Her 12-year-old daughter received a report about PPS written by Dr. Cashman through her school nurse. This member then made her doctor aware of the work being carried out at the Montreal Neurological Institute and Hospital and was subsequently referred to the Polio Clinic. We thank our member for recommending that high school students receive information about handicaps and support groups. Sally Aitken Polio Quebec.

LincsPPN comment. We should also explore ways of getting young people to know about support groups for people with handicaps. This is a good idea, how about contacting your local schools and

asking them if you can talk to the students about Polio, Post Polio and having a loss of ability. Let us know what you think. Would you be prepared to talk to the school nearest you, to the Scouts, Guides, or any group in your area?

If anyone would like to take up the challenge and talk to the School nearest to them, or to any local youth group, then please get in touch with us and we will send you some information that could help. Talks need not be long, fifteen minutes with time for questions afterwards is ideal. We have transcripts of talks already given. Contact Hilary.

MY GORILLA

I tried to go to work today, I tried my very best, But, I awoke this morning with a Gorilla on my chest.

Sometimes he’s on my chest, my legs and sometimes on my back, I never know when my gorilla’s going to attack.

In battle I’ve engaged him and thought that I had won, Only to enrage him and then he had his fun.

Of taking my ability to run, to work, to play Slowly I am learning that he always gets his way

So I have to learn to live with him And his banana breath For if I try to beat him he’ll Gorilla me to death. My Gorilla’s name is Polio, I’ve had him since an infant And everyday he tries his best to make my life recumbent

If you have a gorilla seek help and seek help soon For with help from doctors and friends, maybe he will be but a baboon.

Written by Edgar L Baker, Dayton Post Polio Group, OHIO and given to Hilary when they met in Tipp City, Ohio.

A CREED TO LIVE BY

Do not undermine your worth by comparing yourself with others, It is because we are different that each of us is special,

Do not set your goals by what other people deem important, Only you know what is best for you.

Do not take for granted the things closest to your heart

Cling to them as you would you life, for without them, life is meaningless.

Do not let your life slip through your fingers by living in the past nor for the future. By living you life one day at a time, you live all the days of your life.

Do not give up when you still have something to give Nothing is really over until the moment you stop trying It is a fragile thread that binds us to each other

Do not be afraid to encounter risks

It is by taking chances that we learn how to be brave.

Do not shut love out of your life by saying it is impossible to find The quickest way to receive love is to give love;

The fastest way to lose love is too hold it too tightly; In addition, the best way to keep love is to give it wings.

Do not dismiss your dreams, To be without dreams is to be without hope;

To be without hope is to be without purpose. Do not run through life so fast that you forget

Not only where you have been, but also where you are going. Life is not a race, but a journey to be savoured each step of the way.

Author Unknown

Sent to us by Rev. Karen Utz, Pennsylvania, USA. popette@twd.net

Australia

“We” are the “Mornington Peninsula Post-Polio Support Group in Australia” and Deirdre and myself together with Vic Oliver and Maureen Smoker try our best to keep this group together.

We meet at the “Mornington Bush Hospital”, courtesy of their Board of Management each month and generally have a good time whilst seriously discussing the post-polio problem. We have twentyseven members at present, though not all attend the meetings. Quite a few pay their dues ($10.00 per year) and are happy to receive our newsletter each month. I try to incorporate something medical i.e. the latest information from Richard Bruno and others, mostly from the USA. Not a lot of research is done here on the Post Polio issue. I also incorporate the general chit-chat that goes on at the meetings and try to keep it light – no doom and gloom.

One of our regular members, Bruce Worme, who lives further down the Mornington Peninsula, is putting on a Christmas Lunch for us on the 7th December. He is providing a big piece of beef on a spit and all the ladies have volunteered to provide either a salad or a dessert. We are all looking forward to the “do” very much. We had a “Christmas in July” lunch at the local hotel last July which was quite enjoyable but the membership requested more social contact so this is our first event since then. We are planning a few outings to the local wineries here on the Peninsula, of which there are many, and I will do my best to stay sober. We still find it odd, after thirty years in Australia to have Christmas in the heat. We are experiencing a bit of warm weather at the moment, today is beautiful at 26 deg and we are expecting 34 deg on Wednesday. When it gets up to the 38 deg (100F deg.) mark it gets a bit much, but as we only live up the road from the beach this is not too much of a problem for us. (Eat your hearts out!)

One of our older Post Polls, Audrey Donehue, has recently undergone a total hip replacement operation on her “good leg”. Her surgeon was very worried [about] how she would cope with it and said that she would probably be in hospital and nursing home for at least three months. Seven weeks later she discharged herself and is doing really well. Typical Polio A Type. Her surgeon had never operated on anyone who had had Polio before so he was very relieved at her quick recovery.

Deirdre has helped me by typing this for me as she is a much quicker typist than I am, so I am going to volunteer to wash-up after dinner. (He said “No way” Hils, how about that for gratitude!!)

I will finish now and take this opportunity to wish you and all your group a Happy and Safe Christmas and Prosperous New Year.

Kind regards, Dennis and Deirdre

Lincolnshire Directory [International/National/Local Support Organizations] –

Mornington Peninsula Post-Polio Support Group

From Dennis Hurse Far North Queensland Australia…

Dennis has sent us the following information on a B&B near them which is 100% set up for those of us ‘less able’, Greg himself is in a wheelchair. Dennis says come visit and meet their PPS support

group…

Koah Bed and Breakfast in Tropical North Queensland. Greg and Sandra Taylor offer two double guest rooms in the main house or unique fully self contained chalets with double bed, twin bunks, TV, fridge and ROLL IN BATHROOMS. They overlook native bushland and a large dam stocked with fish. Lot 4, Koah Road, via Kurunda, 4872, Far North Old. Tel/ Fax 070 93 7074

<koah@ozemail.com.au>

Kay Trevan in Adelaide

<ktrevan@adelaide.on.net>

Since April 97, I have bad pain in both lower legs, extreme fatigue, am sensitive to cold. It was 42C here yesterday (Adelaide, South Australia), and I needed to wear track pants. I have had tests: Xrays, CT scan, Evoked response tests, needles with electric wires stuck into my calf muscles, blood tests, MRI, and still no one can tell me what it is. I need to use a walking stick, and we are now going to buy a wheelchair, because I cannot stand or walk for very long. I am 52 and was a mature student studying 2nd year french at Adelaide University when I had to put a hold on this and now believe it might be PPS. Thankyou LincsPPN for putting me in touch with other PPSers in Australia, the internet is wonderful. I would love to correspond with others with PPS, so please write to me. UK members write c/o LincsPPN.

SNIPPETS FROM PPSers AROUND THE WORLD

Helen K Ferguson, Florida, writes

<hkf@tu.infi.net>

According to Gudni Thorsteinsson, M.D.¹, at the Mayo Clinic, urinary problems are not unusual, as well as intestinal problems. For many of us the muscles in that region have weakened/atrophied and our decreasing physical activities can lead to this for some people. For some of the ladies, there is the added strain that was put on the pelvic muscles when we were pregnant, which can lead to urinary problems even for the TAB. Aren’t we lucky today that there are aids that help us through this and allow us to continue to be active?

Dr. Gudni Thorsteinsson latest article “Subspecialty Clinics: Physical Medicine and Rehabilitation – Management of Postpolio Syndrome“, Mayo Clin Proc 1997;72:627-638, can be found in our Library.

Tom Walter in California writes <Tomincal@aol.com>

Results of the survey conducted in the early ’90s by Jonathan S Vordemark MD, FACS, FAAP, at Texas Tech in Lubbock have finally been published in a peer-reviewed journal in July, 1996, as reported on the MEDLINE service —

TITLE – Urologic manifestations of postpolio syndrome.

AUTHOR – Johnson W, Hubbard D, Vordermark JS

SOURCE – Journal Wound Ostomy Continence Nurs 1996 Ju1;23(4):218-23 UI-97056335

(Medline’s “Unique Identifier” number)

The abstract of the article available for viewing online on the Internet is similar to the text made available from a talk given by Dr. Vordemark during the Second Texas-Oklahoma Post-Polio Symposium, September 21-22, 1991, at the Ramada Hotel of Wichita Falls before the study’s

conclusion –

Polio survivors may develop progressive functional deterioration years after the acute episode of poliomyelitis, a phenomenon that has been described as Post Polio Syndrome (PPS). This syndrome has been reported to affect bladder function, but nature and frequency of bladder dysfunction in these patients has not been described.

To determine the character and prevalence of bladder dysfunction among persons with a history of polio, we conducted a survey of randomly selected polio survivors.

The survey solicited information on the acute episode of polio and the nature of lateonset neurologic symptoms that could be attributed to postpolio syndrome.

There were 242 female and 88 male respondents to the study.

Symptoms attributable to postpolio syndrome were present in 87.2% of female subjects and 73.9% of male subjects.

Respondents with postpolio syndrome had a significantly greater prevalence of urologic symptoms than seen among respondents without postpolio syndrome, although no dominant pattern of voiding dysfunction was noted.

The early onset of erectile dysfunction was more common among male subjects with postpolio syndrome than among male subjects without postpolio syndrome, and was usually before age 50.

Genuine stress incontinence was seen in 36.3% of the survey population, with pelvic prolapse common.

Sixteen women with postpolio syndrome underwent surgical repair for urinary incontinence, with a success rate of 60.5%.

Bladder disorders are common among persons with PPS, but further clinical and urodynamic data are necessary to define the nature and magnitude of this dysfunction.

Urodynamic evaluation is recommended in any polio patient being considered for surgery of the lower urinary tract.

Ginger Hastings writes

moonwolf@gowebway.com

Adjustment to a disability occurs in stages, and these stages are much like the process involved in grief and bereavement. Hanoch Livneh, Ph.D.. is a Rehabilitation Therapist and researcher/scholar, and has defined these phases as: shock, anxiety, denial, bargaining, anger, accommodation and adjustment. I won’t go into the emotional content of each phase, but each one raises some very different emotions and is vital to the total adjustment process.

Polio Survivors are people who are in various stages of their adjustment process. Some in the early stages can no more “just get over it” than they can “just get over” having PPS; it is something they will have to work through and come to terms with. What may be seen by some as whining and complaining, may be a very necessary part of the initial healing process. Those who have already been through this and have reached accommodation or adjustment often don’t remember what it was like for them in the beginning. At any rate, I see Post Polio Support Groups as places for all PPS-ers

to process whatever stage they are currently in, and to receive support and feedback from both those who share their current situation, and those who have successfully adjusted to it.

I hope that you will share your experiences of how you have made any adjustment with all of us, from those who are new to PPS and still struggling with the denial and anger part of it to those who are now using aids, assistive devices and who have changed their lifestyles and improved their quality of life. It’s not easy, but helping each other is what it is all about.

El Panadero (The Baker) writes

<EMPANADOS@aol.com>

Let’s talk about falling down, and getting up again…. and how we deal with it. Maybe those who have never hit the floor and looked up in embarrassment can get a glimpse at what it feels.

When it happens to me, I immediately yell out, expletives included: “Who the ‘&^%$… dropped the ^%$@&* banana peel on the floor.” While everyone around me unsuccessfully searches for a banana peel, taking their attention off me temporarily, I get up off the floor as my dignity and selfesteem struggle to return to normalcy. This line is somewhat more difficult to use when falling in the snow, but I use it anyway knowing that there will always be somebody who’ll take your word for it!. Often down but never out….

England

British Polio Fellowship

New Chief Executive

Congratulations to Andrew Kemp on confirmation of the post of Chief Executive. On behalf of all Polio Survivors we wish him every success in this post.

“When God Created MOTHERS” Linda Boudreau <sheralee@glinx.com>

When the Good Lord was creating mothers, He was into His sixth day of “overtime” when an angel appeared and said, “You’re doing a lot of fiddling around on this one.”

And the Lord said, “Have you read the specifications on this order? She has to be completely washable, but not plastic. Have 180 moveable parts….all replaceable. Run on black coffee and leftovers. Have a lap that disappears when she stands up. A kiss that can cure anything from a broken leg to a disappointed love affair. And six pairs of hands.” The angel shook her head slowly and said, “Six pairs of hands…no.” “It’s not the hands that are causing me problems,” said the Lord, “it’s the three pairs of eyes that mothers have to have.” “That’s on the standard model?”, asked the angel.

The Lord nodded. “One pair that sees through closed doors when she asks, ‘What are you kids doing in there?’ When she already knows. Another here in the back of her head that sees what she shouldn’t but what she has to know, and of course, the ones here in front that can look at a child when he goofs up and say, ‘I understand and I love you’, without so much as uttering a word.” “You should scrap it and start over,” said the angel. “I can’t,” said the Lord, “I’m so close to creating something so close to myself. Already I have one who heals herself when she is sick…can feed a family of six on one pound of hamburger…and can get a nine-year-old to stand under a shower.” The angel circled the model of a mother very slowly. “It’s too soft,” she sighed. “But tough, said the Lord excitedly. “You cannot imagine what this mother can do or endure.”

“Can it think,” asked the angel. “Not only think, but it can reason and compromise,” said the Creator.

Finally, the angel bent over and ran her finger across the cheek. “There’s a leak,” she pronounced, “I told you [that you] were trying to put too much into this model.

“It’s not a leak,” said the Lord, “it’s a tear.” “What’s it for?” she asked. “It’s for joy, sadness, disappointment, pain, loneliness and pride.” “You are a genius,” said the angel.

The Lord looked sombre. “I didn’t put it there.”

Letters to the Linc-Pin

Margie Nelson in California writes

I am writing to you to first and foremost thank you for having this WebSite! My three sisters and I have lived with the devastating effects that polio has had on our dad (not to mention our mom!). Our dad contracted polio when he was 17 years old, and that was about 27 years ago. He was born in Nova Scotia, Canada, and was treated at the Halifax Infirmary. He was on an iron lung, and paralysed from the neck down, until a wonderful person came into his life (who became a very close friend) and encouraged him and helped him to learn to walk again. Unfortunately, his parents were only able to visit him once during this stay of one and a half years at the Infirmary (I think how devastating this must have been for his morale).

I am sure this is not a new story to anyone dealing with the unfortunate circumstances of having a loved one suffering from polio and its effects. We (my sisters, mom and I) all knew that post-polio syndrome was a reality before any Medical Doctors acknowledged it (and some still refuse to acknowledge it). Over the years we saw our dad unwillingly relieved of his ability to go for short walks, mow the lawn, drive the car, and after many years of his ‘keep on going’ attitude, he agreed (most reluctantly) as we did, that a wheelchair may give him more access to is home than walking could.

My most vivid memories of the effects of my dad’s polio are of him ‘falling’. The doctor said he had ‘black out spells’. (So, why didn’t he give his best efforts to rid my father of them – he only provided support when my father ended up in hospital). In my exasperation I can only quote a truly Californian expression, ‘Whatever!’ (as it makes no sense whatsoever!) I can’t tell you how many times my dad fell and almost put his head through the TV, the glass table top, or something else that could have killed him. My mom and I would jump at any loud sound, as were programmed to respond to my dad’s situations. Many times it was not serious, sadly, sometimes it was. Unfortunately, the doctors shrugged it all off, except until he needed surgery…………

Perhaps if more health care providers had experienced this first-hand, they would not be so willing to so callously disregard it… My thoughts and prayers for all post-polio survivors and their families.

Marcia Falconer in Canada writes

I have read your newsletter(s) with great interest and much sympathy. I don’t know if you are interested in a somewhat different story.

In the late 1940’s my mother, father and I spent every summer at a church “camp meeting” in Pennsylvania. In preparation we hauled carpets, beds, mattresses, a chest of drawers, a table and chairs, a small kerosene stove and an old wooden ice-box to the camp meeting ground located in a small forested area. The furnishings were moved into a large (12′ x 12′) tent complete with a wooden floor and there my family would spend the next weeks socializing with friends, going to “prayer meetings” and enjoying the relative cool of the camp grounds compared to the sweltering heat of the city.

In the summer of 1949, when I was 7 years old, I became sick with a very high fever while we were at camp meeting. My mother took me on a 45 minute trolley car ride to see the doctor. I remember the ride mainly because the trolley car bell, which sounded at every stop, made my already bad headache intolerable. I don’t remember the visit to the doctor but I do remember being sent back to the camp meeting in a taxi – my first time ever for a taxi ride.

After this I have no memory for many days. My mother said I cried a lot from pain in my back, arms and legs and I couldn’t eat. Then there are two vivid memories. One is being too weak to get out of bed and so my father carried me from my small bed to the larger bed that my parents shared so that I could be more comfortable during the day. The second memory concerns a baby “potty chair”. I was too sick and too weak to use a toilet, so my parents brought my old potty chair into the tent. It had wooden arms and by holding onto them I could move from the bed to the potty chair and lower myself onto the seat. This memory is still colored by the embarrassment that a 7 year old felt for being relegated to using a baby’s potty chair.

As I recovered, but still was restricted to bed, my parents would tie the tent flap back so that I could look out and watch my friends playing. These friends could call to me from a distance, but nobody was allowed to be near me except my parents for two (or was it three?) weeks. I spent many long days sitting up in bed, playing with paper dolls and wanting to be out with my friends. Finally camp meeting was over and we returned to our house in the city. Now I was allowed up but I was quite weak and in fact, spent most of the day just sitting on the sofa. Eventually school started – I returned to second grade and things became normal.

So that’s it. Except that I went on to university and studied biology. After graduation I worked as a technician in a laboratory where we used polio virus in our research. Before beginning my work I had to have a baseline antibody titer done in case of a possible accident with the polio virus. When I came in for the results, the doctor said “Oh, I see you’ve had polio.” “Not to my knowledge.” I replied. “Ah but you did – you have a high level of antibodies to strain 2 of the polio virus and low levels, as would be expected from Salk shots, to the other two strains.

In speaking with my mother, the only possible episode of illness I ever had that could possibly be polio was the one I described above. Still, aside from “weak legs and arms” during that summer, I never had an other effects. I had, I suppose, what might be classified as non- paratytic polio. And in my mind this was just a bit of curious information.

Now I am 55. I have a PhD in cell biology and I am a research scientist with my own lab doing work in molecular biology and virology. And some curious things have been happening. For the past 7 years, after physical stress, my right leg suffers from episodes of “drop foot” which cause me to stumble or occasionally fall. Similarly, after periods of stressful use of my arm – for example, canoeing, – my right forearm will be weak. These episodes have become a bit more frequent, last longer and/or they are incited by less stress. Numbness was never associated with these symptoms and although they regressed, the muscles always seemed to never quite return to the pre-stress state. I could mention other symptoms as well, but I prefer to think they may be related simply to growing older.

Over the past six months or so, the “drop foot” in my right leg has become essentially continuous and my doctor has prescribed an ankle-foot-orthosis which works wonders. It would be nice if I could fix the right arm symptom as easily. The major neuro-muscular diseases have been ruled out and I have “idiopathic muscle weakness with some atrophy”. I mentioned PPS but the doctors are unfamiliar with it. I gave them some literature from sites on the Web but have had no “feedback” about the articles.

So there you have my story. It is my opinion that PPS may be causing my symptoms. I am still seeing doctors who have given me no other, real, alternative diagnosis. Curious isn’t it? I wonder – are there other people like me, who have had non-paralytic polio and are now seeing muscle/nerve effects which are similar to those suffered by people who had obvious paralysis during their acute

polio episodes? I would enjoy hearing from anyone else with a similar story.

GINI – International Polio Network gini_intl@msn.com

Have a new CD-ROM available. Post-Polio Syndrome: A New Challenge for the Survivors of Polio. For additional information, copies, or literature about the late effects of polio, please contact: International Polio Network, 4207 Lindell Boulevard, #110, Saint Louis, Missouri (MO) 63108- 2915, U.S.A. Tel. (314) 534 0475 Fax (314)534-5070.

Seppo Utrainen, Polio Association, Finland

Seppo Utrainen would like to introduce himself to us. He is on the Board of the Polio Association in Finland. A Polio Survivor of 1956 in Finland. He is 48 and married with two children and has an M.Sc. (Eng.) and since 1992 has run his own business as a Consultant.

Viola Pahl, Vancouver, Canada writes Is this what they call at Hot Seat?

In 1977 was chosen along with other handicapped people, plus a doctor and therapists, to tour part of Japan. We were to visit rehab centers and share with staff and patients things we have in common. On a “day” off, we were at a posh resort. I wanted to have a bath (they had western toilets and bathtubs in this particular resort), but the tiled bathroom was icy cold. I could not find a thermostat. But as I was sitting on the toilet, I noticed a control switch and thought “Hey, heat at last!” I turned it on to the “hot” setting. Would you believe it? It was to warm the toilet seal – not the room. (Is that what is called a “hot” seat??) Now that’s luxury, folks, sheer luxury! The closest thing I ever got to this was when I was in the hospital in 1948/9 with polio. In those days (maybe they still do it), the bedpans were often warmed before we used them. Just the same, I would have rather had the room heated than the toilet seat.

See our Library Book Catalogue for details of Viola’s books GOLD IN LIFE’S HOURGLASS and GRANNY’S LOVE/HATE AFFAIR WITH A COMPUTER.

DO STIFFENED RED CELLS HAVE A ROLE IN PPS SYMPTOMS?

Dr. Les O Simpson, Dunedin University, New Zealand

My primary assumption (Simpson’s Axiom) is that “Persistently impaired capillary blood flow is absolutely incompatible with normal tissue function.” You should understand that red blood cells are about 8 microns in diameter while the average capillary diameter is about 3.5 to 4 microns which means that red cells must change shape to traverse a capillary system. So capillary blood how will be adversely affected by red cells with the reduced deformability which accompanies a loss of discocyte shape. The effects of stiffened red cells can result in the rate of blood flow being reduced to a point where the rate of delivery of oxygen and nutrients is inadequate to sustain normal tissue function. Physiology textbooks record that when a working muscle is deprived of oxygen it fatigues very quickly.

The availability of oxygen is reduced in anaemic states because there is inadequate haemoglobin to transport available oxygen to the tissues. Tiredness and general bodily dysfunction occur at high altitudes where there is a low oxygen tension. When episodes of low blood pressure (hypotension) occur there may not be a sufficient driving force to maintain flow in the capillary system. Because I have found in a number of chronic disorders associated with chronic tiredness (ME, MS, AIDS,

Lupus, Occupational Overuse Syndrome) that there are changed red cell shape populations, I have proposed that the resistance to flow in the capillaries of shape-changed red cells may also result in inadequate rates of oxygen delivery to sustain normal tissue function.

As it seems possible that the health problems of post polio people could be a consequence of shape changed red cells I examined blood samples from 21 female and 10 male post polio patients. The results showed that 8/10 males had at least one abnormal value and the remaining 2 had highnormal values. A similar proportion of females (17/21) had at least one abnormal value, 2 had highnormal values and one had no abnormal values.

Dr.Liz Falkner of Masterton NZ, a polio victim, arranged for me to assess 75 blinded blood samples which included 29 samples from blood donors, with the remainder from post polio persons. It is relevant that in 1993 Chetwynd et al reported that 48% of 694 cases of post polio suffered from excessive tiredness, 30-50 years after suffering acute polio. While it could be expected that changed red cell shape could be involved in the excessive tiredness, in our study 31 of 46 cases considered they were “well” or “slightly unwell.” Of the 2 cases who considered they were “severly unwell” one had a normal blood picture. Thirteen cases considered they were “moderately unwell”, and 12 had blood changes typical of cases of ME and one had a normal blood picture. At the other extreme, of the 11 cases who considered they were “well with no symptoms” 10 samples showed changes typical of those with ME-type symptoms. Because of this unexpected disparity between reported wellbeing and blood results, the study was not submitted for publication.

Similar problems relating to perceptions of wellbeing were found in a study of subjects with ME who had been diagnosed at least two years before the study commenced. These chronically unwell people attended a meeting every 4 weeks for 40 weeks for blood sampling and there was a significant proportion who considered they were “well” when there were marked changes in their red cell populations. It was concluded that in the chronically unwell, individuals seemed to have lost the ability to recall what it was like to feel “well” and the term now meant that they were having a reasonable day. It seems possible that this could apply to post polio persons as well.

Because red cell shape changes are exacerbated by events which result in relapses (over-exertion, emotional upsets, anxiety) I believe that red cell shape through its effects on blood flow, is a significant factor in the health problems of post polio people.

With that conclusion in mind, I would like to explore the red cell shapes of a larger sample of post polio people. Because my work is unfunded, it would mean that volunteers offering a 3 to 5 drop sample of venous blood would have to pay seventeen pounds sterling or its equivalent for the test. If anyone is interested would they please contact Hilary Hallam at LincsPPN and she will pass on the information to me by email.

Weather Report for Christmas

Turkeys will thaw in the morning, then warm in the oven to an afternoon high near 190F. The kitchen will turn hot and humid, and if you bother the cook, be ready for a severe squall or cold shoulder.

During the late aftemoon and evening, the cold front of a knife will slice through the turkey, causing an accumulation of one to two inches on plates. Mashed potatoes will drift across one side while cranberry sauce creates slippery spots on the other. Please pass the gravy.

A weight watch and indigestion warning have been issued for the entire area, with increased stuffiness around the beltway. During the evening, the turkey will dinimish and taper off to leftovers, dropping to a low of 34F in the refrigerator.

Looking ahead to Friday and Saturday, high pressure to eat sandwiches will be established. Flurries

of leftovers can be expected both days with a 50 percent chance of scattered soup late in the day. We expect a warming trend where soup develops. By early next week, eating pressure will be low as the only wish left will be the bone.

Richmond, Virginia, United States of America

Survey of Anxiety Symptoms & Depression among individuals with Post Polio Syndrome Forms available from LincsPPN

The Department of Psychiatry of the Medical College of Virginia in Richmond, Virginia, USA is conducting a study on the incidence and severity of anxiety symptoms and depression among individuals with post polio syndrome. A survey will be sent to PPSers interested in participating in the study. One does not have to have experienced any anxiety or depressive symptoms to participate. Also, one does not have to have a formal diagnosis of PPS in order to participate. If an individual feels reasonably confident about having PPS, then that individual may certaily participate. This is study is being led by Dr. Rizwan Ali, senior resident in psychiatry and Dr. Henry Holland, Associate Clinical Professor of Psychiatry. Dr. Ali originates from Pakistan where the wild polio virus still exists, and he has a friend with PPS living in Washington, D.C. Dr. Holland is a polio survivor (1950) and has had PPS since 1990. He is essentially retired on a disability from PPS.

LincsPPN Editorial Note:

A selection of Dr. Henry Holland’s posts to the SJU Polio Mailing List including biographical notes can be found in found in the “Dr. Henry Writes” catalogue section of our Library. They hope to have 500 PPSers from around the World to take part in this survey…. it would be nice to have representation from Britain.

STOP PRESS South African Post Polio Syndrome Association has been formed by Priscilla Webster.

LINCOLNSHIRE POST-POLIO NETWORK

Registered Charity No. 1064177

Articles for publication by January 15th please – Publication date January 20th 1998 MEMBERSHIP for this financial year is £10.00

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

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin978.html> Last modification: 10th April 2009.

Linc Pin Volume 1 Issue 8 Read More »

Linc Pin Volume 1 Issue 7

THE LINC-PIN

Issue No. 7 – September 1997 WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/ Registered Charity No. 1064177

CONTENTS

In Memory of Diana, Princess of Wales, who died this day 31st August 1997

LANGUAGE thou art too narrow, and too weake To ease us now ; great sorrow cannot speake ;

If we could sigh out accents, and weepe words, Griefe weares, and lessens, that tears breath affords.

John Donne 1572 – 1631 LincsPPN Website

I am standing upon the seashore.

A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength.

I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.

Then someone at my side says: “There, she is gone!” “Gone where?”

Gone from my sight. That is all.

She is just as large in mast and hull and spar as she was when she left my side and she is just as able to bear her load of living freight to her destined port. Her diminished size is in me, not in her.

And just at the moment when someone at my side says: “There, she is gone!”

There are other eyes watching her coming, and other voices ready to take up the glad shout:

“Here she comes!” And that is dying.

Anonymous

Rev. Karen Utz, Polio Survivor in the United States of America.

More messages to us from Polio Survivors from around the World.

Why?

We don’t know what we had until we loose it, I’ll never understand. This lady was a symbol of caring, not perfect, but an inspiration to all of us.

Karen, your story said it perfectly. The fact she is gone from our sight doesn’t mean she isn’t still doing a marvelous job, somewhere else. Her happy, uplifting spirit will be here forever. Yes there was glitz and glamour, but the kindness for a disadvantaged world shined through.

The Monarchy will never be the same. Church today will be special and inspirational, because of one strong spirit lingering over us. This spirit will be permanently entrenched in the Palace of unbending souls, to change, yes gradually, old hardened ideas.

My thoughts are with you, This Sunday of shaken dreams.

Kane Basie in Anchorage, Alaska.

I am so sorry to hear about Princess Diana…I knew before going to bed last night that she had been injured, but not until retrieving the morning paper did I learn she did not survive the crash. My heartfelt prayers and sympathy to you and to all the UK…

I remember getting up in the wee hours of the morning to watch her wedding, and following the ups and downs of her life since then. She coped with the good and the bad, grew strong and finally seemed to be finding happiness again. I admired her love for children…not only her own, but all children of the human family. She will be missed.

hugs & love Ginger Hastings, Portland OR, U.S.A.

I am also saddened by the death of Princess Diana. This is a true tragedy. As you said, she had just begun to reach her potential and was so special to so many people. The world will have a void without her.

Hugs, Helen Ferguson, Georgia, USA.

I just want to offer my prayers up for Princess Diana and her family. This is such a sad occasion in the UK – love her or hate her, she was never ignored. God bless her and those who died with her. We have lost someone who will not be replaced easily. Republicanism is looking even more certain – a sad day for a Monarchist.

Pam Vogt, Bournemouth, Hants.

I would like to send my condolences to Princess Diane’s Family and to the families of those who died with her.

Bobbie Foster, USA.

Diane had really begun to find her footing and realize how much good she could do for humanity. I too was hoping she had finally found someone to give her some happiness in her private life. My heart is with her children and family. The world has lost a spokesperson that held up a mirror to remind the leaders and those that have power, what real people in the streets are dealing with, that illnesses and bombs do not descriminate or care if you are old, young, rich or poor. A sad day Britain and the world.

Marilynn Biermann, California, USA.

I have felt sad all day about Princess Diana’s death. It is a tragedy. The whole world will miss her.

Carol Meyer, Massachusetts, USA.

I also am one not to get maudlin about these things either but the case of Princess Di is a special one to all of us. I believe like a lot of us she had so much hardship in her life that sometimes she must have felt that the world dealt her a bad hand.

Yes she was special, we will miss her and grieve for her family. To our British members, my sympathy at this time.

Ross Cornwill, Australia.

I had my tele tuned to CNN all evening and heard about the crash from the first. I was awake most of the night following reports of this tragedy. The Princess was an absolute exceptional person, through her very humanness, more able to relate to the average person than I believe any of the other royals can. She was delt a hard hand to play and she came out on top. I believe she truely cared about others.

My sympathy to you and your countrymen. Diana will be missed by the world. Love & prayers, Susan Yakima WA, U.S.A.

She was loved in the US almost as much as in England.

Margaret Sessions, Florida, USA.

For one person to become so well known – and loved – by the world is probably the highest of achievements a human can attain.

All you needed to say was “Di”, or “Diana” and everyone KNEW to whom you were referring. This lady was one who did good works – really good works. I believe she would rather have done them without fanfare, but she knew (or was advised) how to use the media to call attention to those human needs that she worked toward solving. She did this knowing the media would follow her wherever she went – even though it was not something she wanted for herself.

This kind of person, in my book, qualifies as one of the greats of history – and should take her place alongside people such as Churchill, Mother Theresa, Gandhi and others. Unfortunately, she didn’t live long enough to attain the full measure of her potential.

It is the rare person about whom one can say, “This person will TRULY be missed by many millions of people.

Jim Sutton, Graham, WA, USA.

My prayers also go out to Diana and her children. Maybe now the press will stop stalking.

Bob, U.S.A.

My sincere condolences on the death of the Princess of Wales. I know her loss is felt around the World. Please know that we in America are most sorry that this great lady and her extraordinary humanitarianism are forever gone. God bless her, her family and all of you in her homeland.

D. E. Hall, Minneapolia, Minnesota, U.S.A.

Please pardon this personal reflection.

I was awake Saturday night when the news broke. It felt like a serpent uncoiling in slow motion, striking at the life in me. Although, I was raised as an African American, my ancestry is of British origin and influence. My Father’s family date from the 1600’s in the Bahamas, which was under British rule for many years. The documented history starts with two brothers from Spain via Cuba, and an English gentleman from London. These individuals arrive in the Bahamas in the 16th Century and married the native Indians present there. Thus settling the island known as Long Key which is in the Exuma Keys.

When I met my family in the Bahamas for the first time, I was shocked at how British they remain. Today’s Bahamian government is Independent. In fact, the current Prime Minister, Sir Hubert Ingmam happens to be married to my second cousin, Delores. It was my honor to visit their lovely home and be welcomed into the family. In addition, there are two cousins in Parliament.

It was four o’clock in the afternoon when my cousin appeared with tea and crumpets. Having been raised in the USA, I very seldom drink hot tea, except for colds. It was one of the most proper moments in my life. Pinkie out, slip not slurp 🙂

These are the memories that makes me feel like a Brit today. Lady Di was also my Princess and her life now resembles a Greek Tragedy. It is clear, she lived a life of private, isolated pain. Didn’t we hear the lady crying? Didn’t we hear her silent wails? Too suddenly, the fairy tale ends not happily forever.

@-‘,–‘– A rose for you Lady Di.

Kioni, Florida, U.S.A.

Dear PPS Friends’ Round the World, I too, am saddened by the death of Princess Di. We all are.

Eileen in Sunny San Diego.

I too send my prayers for the family, especially the beloved sons, of Princess Diana. We lost a marvelous Lady!

Joan in Florida USA.

The world has lost a grand lady. Sorry, but I feel Princess Di was disgracefully treated within the family. I loved reading about the way she was raising her sons. They wouldn’t be the stiff leader that their father will be, if he ever gets the chance to be King. When Princess Di took them shopping, she saw to it that they were treated just like any other customer. They stood in line, with the regular folk, and payed for themselves. She wanted to be sure that they knew all the things her husband never knew. There was life beyond the palace. Hopefully, William, the older son, in line to be King one day, learned her values and responsibilities in his young life.

I know Heads of State are not being invited to her funeral but it would be a great wake up call to the occupants of the palace if most of the Heads of State decided to attend the funeral. Bill and Hillary had become some of her many good friends in America. I’m extremely disappointed to hear “he” doesn’t plan on attending. I wrote him of my feelings, I just wish others feel as I do. The outpouring of love, for the Princess, has the simple folks waiting in lines for more than four hours, with small children, just for a chance to write their messages to her. She is a symbol of good for all people of the world. The nicest thing that I heard her being referred to was an “icon”. May she and her new love rest in peace.

Bunny in the States.

I’d like to tell you how truly sorry I am about Diana. We heard about 7:00 P.M. Saturday night, and stayed with CNN for about 3-4 hours. What a thing to wake up to and get hit right between the eyes with it. I think that she was the “Queen of our Hearts” over here, also. She knew that love was the most important thing on this planet. I think that she truly cared about the charities she was involved with – and that’s why everyone wholeheartedly returned her love back. This one’s going to hurt for a long time.

Wordsworth said it best:

There was a time when meadow, grove, and stream,

The earth, and every common sight, To me did seem

Apparelled in celestial light,

The glory and the freshness of a dream. It is not now as it hath been of yore;

Turn wheresoe’r I may, By night or day,

The things which I have seen I now can see no more. The rainbow comes and goes, And lovely is the Rose, The moon doth with delight

Look round her when the heavens are bare,

Waters on a starry night Are beautiful and fair; The sunshine is a glorious birth; But yet I know, where’er I go, That there hath passed away

a glory from the earth. Sincerely, Kathy, United States of America.

Now, the whole world is focused on Britain because of the Princess Di tragedy. What a sad life – what a sad death. She will be a legend in the years to come.

Viola Pahl, Vancouver, Canada.

Just wanted you to know how deeply saddened I was to hear of the death of England’s beautiful young “Queen of Hearts.” She was a very special woman, whose kindness toward all people, and whose grace under the most horrendous conditions imaginable, will be anenduring source of inspiration to women the world over. Your American sisters share your loss, and mourn with you today…

Love,

Marcia Bedard, PhD, U.S.A.

The death of this beautiful young woman is truly tragic and sorrowful. She was the light in her sons lives. I wonder who will be there now to provide that light. It is obvious that their Dad doesn’t enjoy the types of things that Diana did with them. Also I can’t help but ponder on why she was so hounded by the reporters. It was because of the type of person she was – certainly not just because she was a royal – none of the others are so hounded. She was a beautiful caring person and I don’t think it was an act.

I think she was real. I have to agree about censorship – I am not in favor of that but I do believe laws could be enacted to prevent such harrassment.

Just thoughts,

Betty in Tennessee, U.S.A.

My sincerest sympathy to those who suffer with the Spencer and Royal families in this most tragic loss, a legacy of beautiful life has been so quickly taken. May we all cherish the grand moments and forever keep her memory alive and pray for the children.

Angel of Northern Lights, Linda, Nova Scotia, Canada.

A sad day for the world, not just Great Britain. I heard this afternoon that the driver of the car had a really high blood alcohol level. And yes, those poor boys will probably be raised just as their father was. The world of children will suffer the most, but the whole world will have lost a real lady who was treated so badly. My condolences to all the UK gangstars.

Love, Sheila Tohn, USA.

Our hearts are greatly saddened by the death of your princess. We, in America, loved her very much. The entire world has suffered a tremendous loss. Please accept our condolances. Sincerely, Dema Lunsford, Olney, TX. 7637

I want to share something that was in the newspaper yesterday: “Two things stand like stone,” a young Princess Diana said prophetically in a speech in the 1980s. “Kindness in another’s trouble; courage in your own.” To me, this exemplifies what she was all about and it reminds me of what happens in this group. The world has lost a great lady.

Helen, U.S.A.

Dear Linc-Pin

Hi, I have MS and PPS and for me the losses continue, and I’m simply angry and at a loss for words or thoughts. Princess Diana was a very real and tangible hope for so many. Her life was that of which ” fairy tales” seem to be based on, yet so many of us realized, was NOT a fairy tale which ended with “and they lived happily ever after.” It WAS her warmth, intelligence, her humor, her sharing and caring, and her commitment and devotion not only to her children but to the “masses” that glistened. Her being and her life drew me toward her in ways that few have ever been able to do..What a tragedy for any loss….what a shattering of dreams and hope. Perhaps the expectations were overwhelming…..but she seemed to indeed possessed the ability and willingness to assume such responsibility in her short life. How could these wonderful qualities ever be overlooked or denied? She found her way through many trials and tribulations and became such an inspiration to so many. What a splendid, humanitarian and caring person in spite of her “royal” inheritance. For the UK and the world…such a loss…such grief…..a beautiful memory and inspiration for all.

Love to all….. Jane Bercier, Louisiana.

Dear Linc Pin Members

I was channel surfing last night and came across the news that Princess Diana had been injured in a car accident. I continued to watch thinking that they would come back on any minute and say she was all right, that she had a broken arm but would recover nicely. As the hours passed and I waited for news of her condition, I kept praying the damage was only minor. Then they showed the condition of the car and I was so afraid. ‘Dear God, Please do not let her young sons see this broadcast on television. Please let their mother be OK.” Then they announced that she had died. Such a terrible waste of a life that was making such a difference in this cold world. She will be missed. She was a truly good person.

Shirley in Kansas, USA

ODE TO AN ENGLISH GARDEN : FLEETING AS FLOWERS LaVonne Schoneman Copyright © 1997Sincerest sympathy, from LaVonne Schoneman Seattle, Washington USA vonnejo@aol.com
Fleeting as flowers PhotiniaPhlox Pinks and suchFreesias with tight white frilled ruffsThe summer the garden the life of one man enjoy them wheneveryou possibily can	Who is to blame when such lives endthe flowers the garden the woman the friend?I rather believeGod calls the shots the garden’s reseededwith perennials plotsof flowers to bloom for another day

The woman, too, will fadeand dieeach blooms for a moment as withLady Di

In God’s lovelygardennot one fades away the resplendent people comprise Hisbouquet.

Pinks double = Woman’s Love – Pinks single = Always lovely – Phlox = Unanimity – according to Kate Greenaway’s Language of Flowers

For Karen and her family

Sparkie Lujan, Montana, U.S.A. wrote this on 2nd September for Karen’s mum (popette), one of our PPS Pals on the Internet whose mum died today. Our thoughts are with you Karen and your family.

Also for Prince Wiliam and Prince Harry – know that the whole world’s thoughts are with you.

Thank you all so much for the condolences and love you have so freely expressed! Sparkie – the poem was so beautiful! What a lovely thing for you to do! When I read it, I keep hearing it sung in my mind to the tune of “Bless This House,” – one of my mom’s favorite songs. Thank you , thank you all, sweet friends!

Love – popette

Lift my mom, oh Lord I pray Take her home to rest on this day Hold her close as I once did

I remember her arms around me as a kid Her warm smile, made me glad she was my mom I will miss you, now that your gone

Know I loved you, and will hold you close

I love you mom, and this I boast God will care for you these days I know his love, and his ways So rest in peace dear mom of mine

As the almighty God loves you, he is simply devine

CONTENTS

This issue includes an article from our online library (our newsletter is distributed by post to many subscribers who do not have Internet access). Rather than duplicate the article in this online edition of the newsletter, I have instead just included a link to the library article. I have assumed that those of you who already have the article would prefer not to have to print it again if you wish to print this newsletter for your own use. However, if you are printing copies for further distribution we would ask you to print copies of the article as well.

In Memory of Diana, Princess of Wales

Editorial

Jane’s Story

Nature Notes from the Pen of the ‘Lunatic Fringe’

Medical Funnies

Letters to the Linc-Pin

We now have a link with the Post Polio Support Group of Far North Queensland, Australia

Letter from Marilynn

Experiences Adapting To BiPAP+Mask Technology

Notes From Erika

Respiratory Questions

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

Lincolnshire Post-Polio Network

Editorial

The Committee would like to express Our Sincere Condolences to all the family and friends of Diana, Princess of Wales, and Dodi al Fayed.

We, the LincsPPN, have been overwhelmed with the number of messages pouring in to us. We felt that you would like to read these, if we have left any out then we do apologise.

This has been a week for news. Sad news about our lovely Peoples Princess and Dodi Al Fayed, and then glad news as we heard today that we were granted Charity Status on the 29th August 1997. We feel sure that Diana would be pleased for us and knowing of her wonderful sense of humour have decided to leave the remainder of this newsletter as planned.

This newsletter is shorter than normal, and has some planned articles held over as events of the last few days have taken over. By the time you read this I will be in the U.S.A. I am going to attend the

Atlanta Post Polio Conference

Been There, Done That, Movin’ On A post-polio conference focusing on quality of life.

Our next newsletter will be a special issue, full of information, facts, medical articles, funnies, information from the Conference, and from other Post-Polio Support Groups from around the World – to celebrate our achieving Charity Status. Please help us make this special, send us your stories, letters, we really do want to hear from you.

Since our last newsleter we have had more new members….. We need to hear from you, please tell us your stories of the past and present. You will be surprised how much reading them will help other members. We are all different, and have different problems, but many problems overlap. Generous Donations – we have been overwhelmed in the last couple of weeks by two donations received with membership fees. One from Florida in the States, and the other from Hong Kong… Thank you gentlemen, your letters telling us how the information we provide on our Website

enabled you to get medical help for your condition was a great boost, the enclosed cheques brightened our day considerably. This has been an enormous boost to the Committee and we can now relax just a little…… Our Website is growing and we have many ideas to improve on the service that we provide, as soon as we have funds available.

A meeting with the Director of Public Health in Lincolnshire, was held a few days ago and we are pleased to say that this was informative and helpful and we look forward to working with them to improve services for our members in Lincolnshire. Please do not hesitate to let us know of the good or bad side of your foray into the medical world with your PPS. We need to know who is interested and ready to work with us, as well as those who still believe that it doesn’t exist. We know not all our problems are Polio related, or PPS, all we are asking is to take the enormous amount of information that is out there in the World into the equation.

I would now like to welcome Shirley and let her introduce herself to you.

Hello: I would like to take a moment to introduce myself to everyone. My name is Shirley and I live in Kansas (United States of America). I have volunteered to proof read the articles for the “Linc Pin” as Hilary writes them. I volunteered to do this because I know how hard it is to proof read something you wrote yourself and I thought it would be fun as well. This is all in the spirit of international goodwill and cooperation. Sounds pretty “Noble”, huh? I do realize that some of your words are spelled differently than in the U.S. of A, so hope that is not too much of a problem. May this effort bring us closer together, as people and as friends.

Shirley in Kansas

swhisman@earthlink.net

Hilary’s Trip to the States

Thanks to the generosity of some of the Polio Survivors on the Internet for offering me hospitality – and to my parents for paying for my air tickets – I will be in the States by the time that you read this.

After a few days to settle in, I leave Tennessee for Atlanta Georgia, to go to the Conference. From there, with CarolAnn, Millie and Sparkie, I leave for a trip of a lifetime. Lafayette near New Orleans on the Gulf of Mexico, and to Houston, Texas. To Pineville and then Birmingham and back to Loudon to meet Miss M. Then to Joilet near Chicago, and then to CarolAnn’s house near Niagara Falls in Canada. Along the way, we stay with other Polio Survivors we talk to on the Internet, and meet others who are driving in to meet us. All represent different Post Polio Support Groups in their areas.

Many real time hugs will take place, and an enormous exchange of information, ideas and plans for the future. I look forward to telling you all about it in the next newsletter.

I then go back to Tennessee for a rest – but I have agreed to work with the North Middle School in Lenoir City not far from Knoxville in Tennessee on a project on Lincolnshire and England. I also talk to all 450 in the school, and if the email questions that I have received are anything to go by, this will be real fun, a daunting prospect but fun. I must thank the many organisations in Lincolnshire for the information, videos, booklets etc., that I have to take with me.

Hilary Hallam

Jane’s Story

In 1955 at the age of 5 years I was stricken by Infantile Paralysis (in short Polio). For the first eight days of my illness I was at home with what the doctor thought was Pneumonia. The doctor decided

after this period that it might be more serious so he sent me to the School Clinic for further investigations and from there I was sent to Lincoln County Hospital to see Mr. Thomas. He took five hours to come and see me (after his clinic) in a small room and he said it was Polio and sent me by ambulance to the Lincoln City Isolation Hospital. Upon arriving a Ward Sister came and took me from my father and as she did he asked if I would walk again and she said ‘No’. He replied, ‘if she is my daughter she will’. On the first night in hospital I was put in the men’s ward and next to me in a cot was a little boy about 15 months old from Dorrington who cried most of the night so I played beep bo with him and at this time I decided that I wanted to work with children. My mother said I would change my mind.

The next day I was moved to the women’s ward. In this ward was a girl called Christine Roebuck aged 12 years who was in an iron lung and who sadly died just after I came out of Hospital. Another girl was called Ann Crow who used a walking frame to get around and a lady called Mrs. Minnitt [with] a baby which she had had whilst in an iron lung. While I was in this ward they put a plaster boot on my right foot and ankle and made one for my left leg but it was left on the radiator and never fitted. If I got my right leg on top of my left I could not lift it off by myself and had to call the nurses to lift it off.

I could only get around on my bottom but if I had something to hold onto I could manage to walk. I found that I could use the port hole handles to the Iron lung and could get things out of Christine’s locker. Also I found that I could use Ann’s walking frame but the staff kept telling me off because they had been told that rest was best for my recovery. I don’t know if the fact that I used the aids available to help me walk aided my recovery but I walked out of the hospital six weeks later like an old walkie talkie doll. Stiff legged from the hips downwards and by all accounts took 20 minutes to climb down the 22 steps that led up to the hospital main door. I then attended physio three times a week at Lincoln County Hospital.

In addition to the physic at the hospital I had to do my exercises at home every day and if I tried to give up my parents would push me to continue. Due to this I made a full recovery to the outside world, but I have had weaknesses in my right leg, especially the calf muscle is not as well developed as the left and tires easily if I walk far. My back is also weak and over the last few years I have had problems with my breathing and tests for angina which proved negative. My hands are also getting weak but I did achieve my ambition to work with children and qualified in 1966 as an NNEB. I also have two children of my own who are now 22 and 21 years old. I am at present looking after two boys aged 5 and 2 years and have been with the family for four years and six months.

Sadly I lost my father in 1963 in an accident at work, but during the period from 1956 to 1963 he worked to help the British Polio Fellowship, Lincoln Branch, especially the selling of Christmas cards.

Some of the other things I remember from this Club are…

Garden Parties at Stones Place with Major and Mrs. Walker – President.

Going to Worthing, after my father died, for a holiday.

Swimming at RAF Cranwell.

Some of the names I recall and positions held in 1964 at the Lincoln Branch are…

• Mike Key the Vice President,

• Eddie Wing from the Lincolnshire Echo

• Dr. and Mrs. Stiall the Chairman (sadly died 1964)

• Miss Hall from the Red Cross

• Barbara Bell (Stokes) and her dad

• Mrs. Button and her daughter Pam the Hon Sec

• Nancy Crow the Press Secretary

• Dorothy Roberts the Editor of the Newsletter

• Mrs. Bear

• Mr and Mrs Cave, Tony and Steven

• Wendy Maddan and Wendy Taylor.

At present I am waiting to go the Papworth Hospital Sleep Unit to have tests for Post Polio Syndrome (PPS for short). In the past I have said I had Polio believing that it was all in the past ….. and it has come as quite a shock to read that in some cases it is not all in the past.

Jane now in Cambridgeshire.

Nature Notes from the Pen of the ‘Lunatic Fringe’

Harlow Wood Revisited.

Wandering around the woods surrounding the old Harlow Wood Hospital one warm September Day I paused to admire a ‘Jay’, a rarely seen bird with such beautiful plumage. Further on I cam across the red spotted MyAgaric (the toadstool of fairy tales) shaded by golden fronds of bracken. I smell the many scents of a wood in autumn.

But then what is this coming towards me through the trees? An apparition? A Zombie? A ferocious Monster? A thing to terrify horses, encased in a hard white shell up the body, round the head and neck and down own arm to the elbow. This being set at right angles to the body and the arm below the elbow hanging down like a wet flag. It is wearing a black cape with red ties (obviously stolen from a nurse) baggy pyjama bottoms and slippers. It lumbers towards me, crushing the beautiful red toadstool under one of its big flat feet. I look into what is visible of the face and see that the two front teeth stick out like chapel hat pegs. Teeth Dracula would kill for. I also see the fierce brown eyes, and read the message in them. You may laugh if you want to, but don’t pity me. I realised I was looking into my own eyes forty years ago.

Editors note: The Lunatic Fringe is the pen name of a member living in Lincolnshire, she will be writing each newsletter.

Medical Funnies

My old lady neighbour – ‘Yes, Duck, my son in law was never much good, don’t know why my daughter married him. He died in a mental hospital.

Lunatic fringe – ‘Oh I am sorry, what did he suffer from?’ Old Neighbour – ‘Well duck, he had athletic fits.’

from the States………..

The following quotes were taken from actual medical records as dictated by physicians … By the time he was admitted, his rapid heart had stopped, and he was feeling better.

On the second day the knee was better and on the third day it had completely disappeared. She has had no rigors or shaking chills, but her husband states she was very hot in bed last night. The patient has been depressed ever since she began seeing me in 1983.

The patient is tearful and crying constantly. She also appears to be depressed. Healthy appearing decrepit 69 year-old male, mentally alert but forgetful. The patient refused an autopsy.

The patient has no past history of suicides.

Patient has left his white blood cells at another hospital.

She slipped on the ice and apparently her legs went in separate directions in early December. The patient was in his usual state of good health until his airplane ran out of gas and crashed.

She is numb from her toes down. The skin was moist and dry.

Occasional, constant, infrequent headaches.

From a member in Bournemouth, Hants.

A 29-year-old woman was arrested and accused of attempting to murder her husband by spreading peanut butter over his face, knowing he is diagnosed with severe allergy to nuts. The husband escaped serious injury by immediately injecting himself with a remedy medicine. [Montreal, Canada, La Presse, 07-20]

Was she arrested for “assaulted peanut and buttery”!

Pam Vogt

What It Means to Be Adopted

Teacher Debbie Moon’s first graders were discussing a picture of a family. One little boy in the picture had a different color hair than the other family members. One child suggested that he was adopted and a little girl named Jocelynn Jay said, “I know all about adoptions because I was adopte.” “What does it mean to be adopted?” asked another child. “It means,” said Jocelynn, “that you grew in your mommy’s heart instead of her tummy.”

Sent by Popette……..

Letters to the Linc-Pin

Luv the Book… Dorothea’s book, ‘Healing the Blues’ made me think especially about the hospital. Realised that I spent most of the time hiding under the covers, petrified. No-one told me anything, just lots of interns standing round discussing me. In a ward with older people, dark and gloomy, are my impressions. It was the National Childrens Hospital in London.

Visiting was once a week, but my parents only came once, and brought one sister, just before Christmas. I can’t blame them, it was a long way, and my father was working and they had three other children. I spent Christmas alone. I had no help with the pain.

I made a fuss, and I still believe that one of the nurses ‘took’ my large parcel. I also had a 3′ teddy, been with me for years, but it also got ‘lost’ when I was discharged.

This book has brought out so many buried memories, they are still coming out. I do feel so much better for having visited you and talked more about this. Releasing the blocked memories is lightening my load. I was still awake at 02.00 last night reading, I can relate to so much that she talks about, I will drop her a line and thank her myself.

Jean near Boston – am on the Phone Pal list.

To Pam in the UK, your story sounds sooo familiar, could it be me? Yes, it is! with the addition to the plot. I now am having more and more pain. I suspect we can only beat these fried nerves and muscles to death for so long before they start screaming at us. I drug on through the tiredness and exhaustion… getting worse almost daily… for about 15 years before found out what was wrong. Always told by doctors to (of course) exercise!!! So I added insult to injury very well, thank you (^_^) VBG! I, too, had very young children to care for by my lonesome so just kept pushing.

I still keep plodding on more than I should….hard not to with little ones around (mine now are twin grand daughters 10 months old and their mother and 17 year old son). Difference now is that with what I’ve learned from this list, I know I have to Pace and NOT fry what’s left. The more I do the more the pain comes. I don’t get to take any meds (allergic to most) so try to keep it down which isn’t always possible.

The friends you make on the Internet will help you leaps and bounds. When I was told what was going on it was “You have post polio syndrome, unless you have something else come up I don’t need to see you again. This will not get better, only worse, so rest as much as possible to maybe slow a down” (Thank you very much, pay on your way out, etc.!!!)

Everything I know about PPS, I’ve learned from the folks on the internet. AREN’T they great!!!

Love, Mary-Lou

“Tootings From My Place Alongside the Railroad” Kuna (Pronounce Q’na), Idaho

Editors Note: When typing to each other on the Intemet, it is easy to possibly misunderstand the exact tone that the words are sent with. So we use letters like VBG – meaning very big grin, and LOL – laughing out loud….. We also use Smileys to convey meaning.

🙂 is a Smile

😉 is a Wink – meaning it is a joke :’-) is Tears

There are many many more, but they do help us convey more of the meaning in our words. With the difference in our ‘English’ we need these, you would not believe the misunderstandings, mostly very funny, that take place.

We now have a link with the Post Polio Support Group of Far North Queensland, Australia

We have just received their June newsletter in which we were thanked for allowing them to use information from our Website….. and in return I think you will agree that the following article from this newsletter shows that we have similar problems all over the World….. and that we can support each other no matter how far apart we are.

David Hurse writes………..As a starting point for our discussion Ned Kelly has contributed a very

moving paper which we print here with his kind permission. The sentiments that he expresses are echoed by many polio survivors.

“SUCH IS LIFE”

Born 26.10.56 in Melbourne.. Polio at age 5 years….

Lived with thoughts and little memory of the experience

In my early teens I had difficulties with my left arm and leg. Was always asked questions and never realised how a would affect me until later.

In my early thirties I noticed small things were not working well – breathing, movement, aches and pains in all parts of the body – good bits and worn bits. In 1992 things started to go wrong – knees, back, arm and shoulder, neck pains, headaches, stiffness, lack of breath etc.

1993 – Time to start asking questions from the medical profession. Well I really believed what they told me. For example my age factor; work and life had caused minor problems – my cramps and pinched nerves in the back, loose knee joints; arthritis, maybe viral infections.

SOLUTION – “TAKE THESE PILLS”

In the middle of 1993 I was told I had stress and anxiety and forced to take time off work. Twelve months later many different doctors and diagnoses later finished off my working career.

Pension time…. Now I was lost. I had been working 20 odd years. Should still be at work 6 a.m., home at 5 30 pm. This is the time I started to hate myself and dislike life eg. I am no good anymore. But I was lucky. I had a beautiful caring wife, who put a lot of hours and effort into giving some life and happiness back to me.

Now we are in 1997…. and I have started to fight. I know now that life is worth while and there are people who care. I am still seeking medical advice and asking questions. This is in the hope that through my pain and experiences this will not be wasted and someone out there will gain some benefit and help in their life. I’ve joined a support group and through the people associated with it I have learned and gained so much. But one of the most important facts are that I gain important new friends and family, so to speak.

This is a strong part of my life and thoughts. I hope that someone will read this, smile and maybe join a support group or write their story and share what we all have in common.

Always remember you are not alone and you can always ask questions, listen to advice, and learn more to better your life.

Bye for now Ned Kelly

Editors note: Thank you Ned for writing this and I hope that by adding this to our newsletter, that your wishes of it being read by someone will now increase to many, many more all over the World.

If anyone would like to write to this Group their address is 44 Miles Street, Cairns, Queensland 4870, Australia….

Roles And How We Play Them

Whenever I’m disappointed with my spot in my life, I stop and think about little Jamie Scott. Jamie was trying out for a part in a school play. His mother told me that he’d set his heart on being in it, though she feared he would not be chosen. On the day the parts were awarded, I went with her to collect him after school. Jamie rushed up to her, eyes shining with pride and excitement. “Guess what Mum,” he shouted, and then said those words that will remain a lesson to me: “I’ve been chosen to clap and cheer.”

Letter from Marilynn

Dear Polio Surrivors

Surgery was one of the many subjects covered at the GINI conference. The truth is that NONE of us are really good candidates for surgery and should avoid it as much as possible. Your friend is absolutely right, there goes any thoughts of an all inclusive face and body lift…oh well, if someone decides to love this person it’s going to have to be an “as is” deal.

The amount of good muscles needed to support and hold a joint replacement anywhere in our beautiful bod’s is substantial. I don’t know how many of the rest of the polio survivors have given any serious thought to the dilema we are in, but because of the way my twisted mind works and the research I have had to do for friend’s that are not on computers, I have looked at what my own options might be if I were faced with the problem. The most difficult information I have had to digest from reading the articles and information during the last two years was that every muscle in our bodies was affected to some extent by the Polio virus, no matter how “normal” we were able to function up until we hit the PPS wall. In my particular case, I have had muscle losses from my eyes down since PPS first reared it’s ugly head. As strange as this may sound to some of those that are new to this whole thing, the eye muscle problems were diagnosed as part and parcel of the PPS thing happening with me by my last eye doctor. I thought I was just dumping the problem on PPS in my head and never spoke about it to anyone until he spoke those words “You started having this focusing problem when the PPS hit, didn’t you?” I almost fell out of his chair.

For those of you that are newly diagnosed or just finding out about PPS, DON’T PANIC. It affects all of us differently, but you have an opportunity I didn’t have when I was finally diagnosed in 1985, which was about 10 years after it had already started stealing my lifestyle and ability to be an independent, self sufficient female who thought nothing of painting, wallpapering, doing electrical and plumbing repairs, paneling walls by myself….in general if a mountain was in my way I would find a way to move it by myself. I would plan very involved charity projects as well, that were supposed to be handled by a committee but marilynn couldn’t wait for others to get their butt’s in gear, so no matter what it was, I would get it up and running before anyone realized what was happening. NOT SMART!!! NO ONE TOLD me the information I got from people like Connie and Sheila who were the first ones to scrape me off their computer screens when I found the St. Johns University Polio List and was on the verge of doing something really stupid to myself if I couldn’t find anyone that understood what I was talking about and believe me. I needed tools to help me cope until I could find a way to lower the outrageous pain levels I had been dealing with as well as so many new problems doing anything. I had been diagnosed with 5 different medical problems in 5 years. I needed help to change my perception of the dreaded symbols I had spent my life hating, dreading,….why did I have these warped feelings about things that were really only tools to help me accomplish a task??? We all know the answers to that, because it was drummed into our heads that they were to be avoided because if you used them you had failed to recover etc., etc. etc.

One of the wonderful things that happens when you finally find others that do believe you, do care about you and will be there for you when you cry and scream your anger and frustration at the powers that be with the questions “Why me??? what is happening??? My whole world has fallen apart. Why??? is that you are heard and understood . You will not get flip answers like the doctor’s give from anyone here. There are things you can do to help preserve what you have and work with your body instead of running it into the ground. Will you have to make changes about how you might have done something last year and can’t seem to do it now??? Yes…so what?? If you really look at TAB’s (TEMPORARILY Abled Bodied or sometimes also refered to as AB’s) you will see them look for ways to get out of doing some of the stuff we take on or finding easier ways to do something, not because they can’t do it with the blood, sweat and maybe tears we might tackle something with, but because they are not being driven within themselves to do anything regardless of the toll it would take just to prove how worthy they are to anyone else (especially themselves). They were never told that it is not ok to ask for help from others, so they do. Most of us choke on

those words….I need help, or could you take care of something, or I want…. I am still working on saying the words I need or I want.

We all need support at different times. When you have others to help you carry the load that we sometimes think will bury us, it all becomes somehow more manageable.

LISTEN AND LEARN BEFORE you cause damage that no one and nothing can repair or replace. YOU do NOT have to outdo any 5 or 10 other people to be worthy of love and respect. This is where you can unscrew your smiley masks. You won’t need them here. Many of us will trip on dust bunnies so toss the darn mask into a corner so that no one trips on it. I know it will take you time to believe that, but the faster you reach out, the more we can help you past the shock of not having to straighten or screw that mask in place. We all have them but have gotten to the point where when we are together, we don’t need them. We love and respect each other as we really are….warts and all.

Much <3 (luv)

Marilynn, U.S.A.

Miriasha@aol.com

Article from our Online Library

Experiences Adapting To BiPAP+Mask Technology

Author: David Ronfeldt

The following memorandum was prepared by David Ronfeldt at Joan Headley’s request for a recent GINI conference.

At your request, this memo elaborates on my difficulties adapting to the

BiPAP+mask technology, and offers some points that may be useful for other people to read who are concerned about adapting with difficulty.

NOTES FROM ERIKA

Erika

c/o Neurological Resource Centre 23a King William Road

Unley SA 5061 AUSTRALIA

This week I received a Disability Pension Review form from the Government – it was unexpected due to the type of disability I have, The Post Polio Syndrome, and let’s face it, we all know, there isn’t a ‘cure’, and it doesn’t ‘get better’. It’s management, 24 hours a day, 7 days a week management. ..

You know, I’m sure there are many people who are quite content to survive on a government subsidy of some sort, and probably get by quite comfortably with a little, perhaps ‘on the side’ finance. I know there are people who go to great lengths to cheat Workcover or insurance companies. I can assure you that there are a larger number of people who need help from the Govemment to ‘survive’.

Disability, in whatever form it takes, can be and is for many people intolerable; able bodied people whose minds are not sound, either from disease or brain injury or some unfortunate genetic disorder.

The polio virus affected me at the age of three; I was taken from my family and deposited at what was in the 1950’s, the Northfield Infectious Diseases Hospital. Because of quarantine, no one but over worked, tired and in many cases helpless staff were all the company we had. All ages, all sexes, immobilised, on frames, rocking beds, sand bagged unable to move, unable to feed ourselves, toilet ourselves, move nothing, not even to lift our heads off the bed, hard, board beds. The pain, fever, fear, loneliness, frustration and uncertain futures.

Some, like me, spent months in frames, on wheel beds, in painful, unrelenting physiotherapy, and still ended up in body braces, callipers, on crutches. Different, reserved; quiet; in pain; missing out on life, on playing; on learning to socialise and missing out on valuable school work; often becoming solitary adults.

The callipers may have been discarded, but bodies now twisted, limbs wasted, legs and feet difference, uneven, deformed and life viewed from a completely different perspective. We were told to get on with life.

‘You had polio but you’re over it now, so forget it’.

School work suffered, for me, my incessant physiotherapy sessions were always at the same time every week. I still can’t cope with figures, maths, algebra, physics & chemistry etc. I was never there.

For many months, I could not hold a pen to write and still find I get pain and fatigue in my hand when I write, as I do now, after only a single page.

I was ‘protected’ by my parents, ‘for my own good’. I had dreams; architecture, medicine, science. I was dissuaded due to my lack of endurance and concentration. I had dreams, an ‘air hostess’ – not with a disability. A hairdresser, but could not stand on my feet for very long.

My dreams faded. I was not a good student. I was socially reclusive, my self image and esteem became lower as the years went by. I was a shop assistant, a cook, a barmaid, a domestic; all things I could give up when my pain, weakness and fatigue made the effort of the work and hours became too much and I had to take a couple of months off. Not much chance to save money for my future, but jobs I could go back to when my pain and energy level recovered.

In all those years, I never considered myself disabled, just unfortunate, and I got on with life the best I could. No sport, no high heels, no short skirts, no dancing and always with a limp, that I could ignore, but others could not.

I never admitted that I had polio, I always blamed uncomfortable shoes, blisters, sprains everything but polio. In the mid 1980’s, “things” began to go wrong. I couldn’t walk as far or as fast; my right leg would give way, and I would fall losing control of my ankle. I was embarrassed and became wary of social and work situations. I felt unfeminine because of my “sensible” shoes and “camouflage” clothes. I was in my 30’s, I wanted so much, but afraid to expect even a little.

Relationships failed, jobs came and went; I couldn’t “keep up”. I was often tired, and in pain, and always worried about it. I’d cancel social situations at the last minute, and so the invitations got less. I looked for acceptance, but the problem was I couldn’t accept myself. I sought medical advice and was referred to a neurologist who was adamant that I’d never even had polio. I got my records from the Children’s Hospital.

No one was ever going to deny me my medical history again, even though I hated it. In the early 1990’s, while working very hard as a domestic, things really began to go wrong. I became ill – severe neck pain and headaches. My gait became unstable; my arms became weak; I dropped

things; doing my hair became a chore. I got cramps in my legs and shoulders – the fatigue and the pain became unbearable. I’ll get fit I thought, after all, another neurologist told me I was just being lazy and should exercise more. I got an exercise bike, ankle weights, dumb bells – 5 kg & 10 kg. I was the dumb bell I just didn’t know it!! I felt as though I could help myself to get and stay fit. I was destroying nerves and muscle fibres beyond repair- muscle atropism began to set in. My left hamstring disappeared; my right calf muscles; both quads. I developed foot drop in both feet and as the tendons shortened, my feet began to curl up. Neck muscles began to deteriorate after a minor car accident. My right arm had already become thinner and weaker. Next my shoulders, left arm, neck & pectoral muscles, back and abdominal muscles; and still I exercised; firm in my belief that it was simply being over forty and unfit. It wasn’t. Alcohol became a great muscle relaxant. It helped me forget what I was, what I could have been, what I could never be, what I might become. Specialists told me it was “family problems” and I was simply depressed and emotional – DAMN right I was.

Then I found a doctor who had another patient who’d had polio and actually knew what the Post Polio Syndrome was, and what it would lead to if it wasn’t properly managed; what it could do if I kept on working as I was, and believe me, the worse I got, the harder I worked – I had to prove to myself that I could, that I was capable, that I measured up.

He suggested that I apply for what was in my mind still the INVALID PENSION – Invalid?!! Me?!! Invalid, unnecessary, unworthy, useless, irrelevant!!! For months I refused to fill in the forms, while on sickness benefits. I took analgesics, muscle relaxants for the spasm; sleeping pills to help with pain, numbness and pressure spots, the crawling skin sensation, and stiffness because I did not move in bed as normal sleepers do. I was afraid I also stopped dreaming. Finally, my doctor filled in the forms and sent them off. I was interviewed, questioned, prodded, probed, emotionally degraded and made to feel like a “bludger”. I cried for three days after my assessment. I was devastated. Then it came, a decree stating that after being interviewed, psychologically assessed and physically tested and diagnosed, I was now on a DISABILITY SUPPORT PENSION – AN INVALID PERSON. I was forty-three!!

Myself esteem, my future, my plans, my dreams, my security, my life had all changed. I had bills, debts and expenses. They went on – a good income did not. At first I spent like a fool, mostly on credit. I was angry, then I stopped. I became sad, I cut corners, made changes, recycled clothes, sold jewellery and artwork, had a garage sale and sold many of the things that had represented my independence. I was resentful. I sold things I loved, nice things, my home, my sports car. Well, after all, I couldn’t get any more out of it without destroying my left shoulder. I lost a lot of money and I lost a lot more. I sold all my exercise equipment. I got splints for my feeble legs, an abdominal support, a back brace, a cervical collar for my neck. I bought a sensible car, that I could fit a wheelchair into. My life had changed, I had not. I still haven’t. I still don’t consider myself disabled – I can’t. I push myself to exhaustion, the early “use it or lose it” is still embedded firmly in my psyche.

But I am getting there, slowly and I do mean slowly. And I’m angry all over again. Tired eyes at the end of the day, a tongue that won’t get around the words I want to say, a voice that becomes thin and broken, a body that aches, fatigue that is all encompassing, a solitariness, a loneliness that I still prefer to think of as self sufficiency and independence. A shelf full of vitamins, supplements, and homeopathy. A chiropractor, physiotherapist, massage therapist, relaxation tapes and a cheap bottle of wine in the fridge. In the words of Mr Spock in “Star Trek”, “it’s life Jim, but not as we know it”.

PS Now I have to reviewed for my Pension all over again!! Editors Note:

Erika, thank you for allowing us to print this. I also felt exactly like you, to receive the certificate ‘It has been decided you are unfit for work’. It’s like being put out to grass. It is bad enough getting this, but I also had a Doctor suggest that I wanted to be like this, that I did not want to work, to walk miles with friends, to disco dance all night long, to decorate my house, garden, etc. Why on earth do

they think that we want to be like this, such a change from our ‘not given up done everything pasts’. I never stopped. I took the challenge every time anyone said ‘She would not be able to do this’ and I tried and tried and most often succeeded. I now have had to change my lifestyle, it was not easy, it has taken many months to come to terms with the fact that this change was necessary but it has beneftted me.

Learning about PPS, taking the advice that is out here, and putting it into practice really does make a difference. Pacing allows one to do much more than without it. Using the aids and assistive devices does work. How many of our members have said the same as I did ‘I don’t need that yet’. I would not give up my electric scooter now. I can do so much more by using it.

I also have had to re-apply, and then the letter arrived a few days ago. Four pages and lots of ticked boxes, and I had to read it four times to work out what it really said. It was good news, but it took about ten minutes to realise it.

The Most Caring Child

Author and lecturer Leo Buscaglia once talked about a contest he was asked to judge. The purpose of the contest was to find the most caring child. The winner was a four year old child whose next door neighbor was an elderly gentleman who had recently lost his wife. Upon seeing the man cry, the little boy went into the old gentleman’s yard, climbed onto his lap, and just sat there. When his mother asked him what he had said to the neighbor, the little boy said, “Nothing, I just helped him cry.”

Practice Your ABC’s Act silly

Believe in magic Create adventures

Daydream every chance you get Enjoy the little things

Find time for FUN

Go to unexplored places Hang upside down from trees Imagine….

Join clubs Keep it simple

Love all creatures Make time for friends

Nap when you can Open your mind to new ideas!

Play with a child Question the answers Run with the wind Sing favorite songs Take days off Uncover your talents Venture out

Walk on the wild side X-pect the BEST

Yield to the moment Zzzz peacefully at night

Barney

A four year old was at the pediatrician for a check up. As the doctor looked down her ears with an otoscope, he asked, “Do you think I’ll find Big Bird in here?” The little girl stayed silent.

Next, the doctor took a tongue depressor and looked down her throat. He asked, “Do you think I’ll find the Cookie Monster down there?” Again, the little girl was silent.

Then the doctor put a stethoscope to her chest. As he listened to her heart beat, he asked, “Do you think I’ll hear Barney in there?”

“Oh, no!” the little girl replied. “Jesus is in my heart. Barney’s on my underpants.”

Pace Come Home

In a small town in Spain, a man named Jorge had a bitter argument with his young son, Pace. The next day Jorge discovered that Pace’s bed was empty – he had run away from home.

Overcome with remorse, Jorge searched his soul and realized that his son was the most important to him than anything else. He wanted to start over.

Jorge went to a well-known store in the center or town and posted a large sign that read, “Pace, come home. I love you. Meet me here tomorrow morning.”

The next morning Jorge went to the store, where he found no less than seven young boys named Pace who had also run away from home. They were all answering the call for love, hoping it was their father inviting them home with open arms.

RESPIRATORY QUESTIONS Ask Wayne – Registered Respiratory Therapist.

Firstly may I say how sorry I was to hear the news about Diana, Princess of Wales. My thoughts go to her sons and the rest of her family and friends. A sad loss, she was such a beautiful and caring lady, one that will be sorely missed.

Secondly, I am sorry that this is a short article, but I have had to work 12 hours shifts in the last few days and have only had time to answer the questions asked privately. I do understand how difficult it is to ask questions, especially when we ask to publish your letters. However, we do understand that the questions you are asking have not been easy ones to ask, and have respected your requests to just have private replies.

Today however, I received a plea to answer the following,……

“Why do I feel so bad at the moment, so out of breath. I want to breathe in like, sighing or yawning, but I just can’t. I am very tired. I want to know would it help me to have oxygen, or do I need respiratory support to improve things. I can’t go on like I feel at the moment, it is a struggle. I remember in the past that if I hoovered that I got very out of breath. I put this down to the way I hoovered and the energy I used. My chest and arms are affected by the polio. I did hoover up a couple of bits a day or two ago as the hoover was nearby, but only this. However, my cleaner now does not use one of the proprietary brands of polish as this affected me, and also cleans whilst I am out of the room, and I wondered if I may be allergic to something, or asthmatic.”

“I do so need some advice, I need to know what to say to the Doctor, after all I have been backwards and forwards to Doctors and recently to Hospitals and still have not been offered respiratory help. Which I am sure I need”.

Without examining you, and without more information, and living as we do in different countries and with different medical systems, this is not easy to answer. It would be wise to visit your family physician or Pulmonary Specialist who might do the following. However, it sounds like it very well could be a series of respiratory complications, running from

1. A simple need for oxygen….particularly when you exert yourself

2. Based on your reactivity to the polish, I’m assuming the odours of chemicals, this might be

Reactive Airways Disease…..A form of Asthma

3. At the worst, nocturnal hypoventilation…The inability to maintain normal levels of oxygen

or ventilation during sleep and/or a host of other related respiratory problems in between.

4. Can’t rule out sleep, or obstructive sleep apnoea.

5. Here’s the confusing part…It could be, a combination of more than one of these things.

Differential diagnosis can be obtained by the following, but these are aggressive testing measures, and will most likely require a Pulmonary specialist to interpret. Try to find one who is familiar with PPS, because there are so many ways that respiratory problems differ in you and the average chronic pulmonary patients.

Pulmonary Function tests

1. Will rule out or in, the reactive airways disease with tests specific to your flowrates

2. This next one is superb for PPS’ers, the test normally done sitting in chair, should be done

while laying on one side, and repeated on the other. This is because PPS’ers often have a

paralysis of one dome of diaphragm, which can be picked up with this type test (right side

down testing, then same study repeated on left side). If the results are markedly different,

problems relating to diaphragmatic excursion can then be pinpointed.

3. Arterial Blood Gases….Both at rest, and after exertion…..This will be the key in factoring out the fatigue thing… Arterial Blood Gases gives information about one’s ability to ventilate normally, at rest, and then under exertion. This test is momentarily painful, because it requires sampling of arterial blood, usually but not always from the radial artery… In other words it hurts like hell. This test is done to check the adequacy of ventilation. In other words, oxygenation is not the important thing here……..

4. In order to rule out oxygen deficiency, simpler oxygen saturation measurements can be

recorded. But again they should be done at rest…and then after exertion.

5. Finally, I would recommend a sleep study, but at a bona fide sleep center with holistic

knowledge of PPS.

In conclusion:

• Peak FlowTests sitting, and repeated on both sides.

• Oxygen saturation at rest and following exertion.

• Arterial Blood Gases, both at rest and after exertion.

• And finally, a full blown sleep study connected to an EEG machine to check frequency of

REM sleep, or lack thereof.

Should pin point any and/or all of these components which could be your problem.

LINCOLNSHIRE POST-POLIO NETWORK

Registered Charity No. 1064177

Articles for publication by November 15th please – Publication date November 20th 1997 MEMBERSHIP for this financial year is £10.00

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

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin977.html> Last modification: 10th April 2009.

Linc Pin Volume 1 Issue 7 Read More »

Linc Pin Volume 1 Issue 6

THE LINC-PIN

Issue No. 6 – July 1997 WebSite http://www.zynet.co.uk/ott/polio/lincolnshire/

The Web edition of this issue differs slightly from previous editions. Although previous issues have included articles that have subsequently been added to our online library, they all made their first appearence in the newsletter. For the first time this issue includes several articles from our online library (our newsletter is distributed by post to many subscribers who do not have Internet access). Rather than duplicate those articles in this online edition of the newsletter, I have instead just included links to the library articles. I have assumed that those of you who already have the articles would prefer not to have to print them again if you wish to print this newsletter for your own use. However, if you are printing copies for further distribution we would ask you to print copies of the articles as well.

Poliomyelitis – Been There, Done That Post Polio Syndrome – Doing It All Over Again

Physiotherapists – We need your help!

Here we are in our later years, having done everything and more, to find that we are afflicted with pain, fatigue, muscles that refuse to work, reduced mobility and falls and what are we told by one doctor – PPS does not exist. Where do we go, back to the Consultants. Not likely… most have not seen or dealt with polio, and in fact even question us ‘Did you really have polio?’ If that’s not salt in the wound, I don’t know what is? 41 years of the Polio Vaccine has meant that the information in those old polio books just has not been read by today’s doctors.

So where must we go now, back to our life long friends the Physiotherapists. But, and there is always a but, what do they know about PPS? Have they been trained for our special needs? If they have then who has trained them and where did they get their information from?

What we would like is British Physiotherapists to research the world-wide information, work with us, we know our bodies and how they are changing. Don’t tell us Polio is old hat. We are not all in callipers and wheelchairs, many of us have little external sign of the polio but the internal nerve damage is there, and we are not all old, many of us are only in our forties and fifties.

Look at our Website – URL above – see how hard we are working to provide as much information as possible in one place to save the medical profession and polio survivors time and energy searching.

CONTENTS

Poliomyelitis – Been There, Done That, Post Polio Syndrome – Doing It All Over Again

Editorial

Hospital Obedience Training

‘Healing the Blues’ Book available

My Story – Miss Annie Wilkinson

Ask Wayne, RRT Respiratory Questions.

LincsPPN Website Information

Words that do not exist, but maybe they should…

Be True To Your PPS And Your Teeth Won’t Be False To You – R. L. Bruno, PhD

Dr. Henry writes about Bulbar and spinal polio

Polio Connection of America, 3 yearbooks available

Letters to the Linc-Pin

PPS Conferences

Lincoln Voluntary Centre, Centre News Back Page

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

Lincolnshire Post-Polio Network

Editorial Hilary Hallam

Another two months have flown by and it is time for this our sixth newsletter.

We must first welcome our new members in Lincolnshire, Kent, Hampshire, Norfolk, Yorkshire, Nottingham, Derbyshire, France, to Joseph requesting help for his neighbours and Abu Dhabi in the Arab Emirates… a special welcome to Debbie and Alan. Debbie was searching on the Intemet and found out about Post Polio and contacted us. See her letter….., we were able to put her in touch with many people round the World who were able to answer her questions and send her the latest medical articles relating to her breathing problems to pass onto her doctors.

This newsletter contains letters and information that we have received which will give you some idea of the questions that want answering. To the National Health Service Executive we

say……..Is the contents of this newsletter, added to the previous ones, not enough to ‘flesh out the

problem’? We do not know how much more you need, to react other than your standard governmentease reply. How much longer do we have to rely on medical help from the rest of the World? This newsletter should contain British Articles, British medical opinion….. help us find Doctors and other medical professionals who will become advisors for our Network.

To the Lincolnshire Health Authority we say ‘Polio did not beat us, and our present problems – whatever you like to label them – are not going to either. How much longer do we have to wait

before you answer our letters and phone calls let alone agree to meet with us? Would you not like to save all the money being wasted now on inappropriate appointments and tests and work with us to define a Chain of Events for GP’s so that they know what to do with Polio Survivors presenting with problems?

To Lincolnshire County Council and Lincoln City Council we say we were disappointed that you could not help with funding towards our work. Our WebSite has put the name of Lincoln and Lincolnshire on the PPS map of the World. To Social Services we say that we are normal people, just the same as you, we simply have some problems that need sorting out. We wait endless weeks for a visit; whoever arrives has no knowledge of our particular problems; we are talked to as if we have no intelligence at all; have to listen to reasons why we only need the most basic aids, regardless of whether they will be of any use, and then are asked to sign forms to allow you to get information from the doctor who referred us. It appears to be ‘don’t offer them anything over £5.00 and find some way to prolong the final decision and maybe they will either get better or pay for the alterations necessary themselves (four of us already doing this, we do not intend to deteriorate just because it takes so long to work through the red tape) or maybe even die!’

To Polio Survivors, families and friends, please ask questions, please write and tell us what you want to know. We have contacts around the World ready to help and hopefully before long we will be getting the medical assessments, advice and treatment we need, and see good British articles alongside those of the rest of the World…. Help with this work, if you have some time spare then give us a ring, you don’t need to live in Lincoln, you could go and do some research at your local library for us for instance, there are a hundred different jobs that need doing. Our biggest need is funding. For our WebSite to continue to grow at the rate it is, and for all the other work involved we need more funding and sponsorship any ideas or offers of help will be gratefully received.

FUND RAISING EVENTS

If you are able to hold a coffee morning, or have a table at your Village Fete, car boot sale, etc to raise funds for our work then please get in touch with us. As soon as funds allow we will have a banner made, and be able to print off many copies of the information leaflets and posters we are finalising at the moment. Myra a member in Ruskington has donated a market stall framework and covers to us and this is available for small cost to cover maintenance. Details of these events will be included in this newsletter free of charge.

ANTI-CANDIDA DIET has helped me lose weight without difficulty for the first time. This diet has to be done under supervision of a Dietician. Article in next newsletter. Ask your Doctor for referral to dietician.

BOOK AVAILABLE NOW

Healing the Blues

Drug-Free Psychotherapy for Depresssion An account by Polio Survivor patient and therapist.

32 copies donated to us to raise funds.

More details on Page 4

Hospital Obedience Training by Viola Pahl, White Rock, British Columbia, Canada

I have come to the conclusion that being in hospital is somewhat akin to Doggy Obedience Training

Class.

Have you noticed that the nurses of therapists or whoever are always talking in ‘imperatives’ just like animal trainers?

Roll over Stand up Sit up

Walk as far as the door Take your medicine Eat your dinner Change your gown and so on and so on.

Whatever happened to phrases such as ‘would you like to sit up in your chair,’ or ‘when you are ready, we’ll go for a short walk.’

At the Doggy Obedience School, the authority figures encourage the pooches with a favourite doggy tid bit to mask the distaste or the commands. Patients get these chewables, too, ‘Good for you’ ‘That’s a good girl’ ‘You are a sweetheart’.

And we obediently wag our tails and allow ourselves to be subjected to more commands. One advantage nurses have over dog trainers is that generally, nurses don’t get bitten by their patients. We may growl at them, be snarky, and pull on the leash in a moment of desperate disobedience, but we don’t bite. Unless, of course, the doctor happens to be a dentist and has his finger in our mouth!

In some of the literature on post-op care for polio’s, I think we should include a few sentences to the effect that polios’ need more back rubs than most patients, because we cannot turn as often and that lower part of the back sure gets feeling as if circulation has been cut off.

At the end of the day, when nursie is weary of commanding a ward of patients, she finally resorts to unorthodox politeness: ‘Would you like a back rub?’ How come she is making an inquiry instead of a command? Why doesn’t she follow protocol and say, ‘Roll over – you’re going to get a back rub’. Well nursie is tired, and so she hopes against hope that the patients will say ‘No, don’t bother’. Some do.

But not this lady. I want to say, ‘Please nursie, I’ve been so good and obedient today. I’d not only like a back rub now, but perhaps several more during the night.’ I daren’t, of course, because the reward system for pets relies on the trainer, and if I get too sassy, by the next evening I might not even get the opportunity to choose a back rub – nursie might just pass me by.

Well, I opt for the back rub. Same equivalent as doggie getting his head patted and his ears rubbed. Or patting kitty on the head. As the blood begins to circulate and the skin tingles after a tough day at obedience school, I lay back in bed, relaxed, and if nursie had the ears to hear – she would swear she heard something or someone purring contentedly.

SHARING

My sister shared a million things Hopes and dreams, toys and schemes and polio

Now I am old, I share with her Post-polio Syndrome

… wish it was MYRRH. LaVonne Schoneman

LaVonne Schoneman, HOW TO COPE, Seattle, WA, USA

BOOK AVAILABLE NOW

Healing the Blues Drug-Free Psychotherapy for Depression

An account by Polio Survivor patient and therapist.

Dorothea Nudelman – California USA David Willingham, MSW

ISBN 0840168-316

Dorothea has kindly donated a case of her hard backed book to our Network to help us raise funds – we only have to pay the postage, they arrived this moming. She has autographed each one “Donated in support of Lincolnshire Post-Polio Network with Best Wishes, Dorothea Nudelman, July 1997.”

To have psychotherapy and bring out lots of polio past ghosts is quite an experience. To write them down another, but to put into print like this takes great courage. I found this book extremely interesting, and also there were many occasions where little parts of my own polio past come flooding back, including some very emotional, tearful episodes. However, I found that this has cleared the air, and I now feel more able to cope with now and the future. If you would like a copy then please share its content with your family, friends and the medical professionals that you are seeing. It gives a great insight into how we might be dealing with our own PPS.

“This book is a psychological peach. It is a story filled with edifying suffering, flinty fortitude, and wise and soulful humor. The immediacy of the dialogue draws us right into the heart of the consulting room. It is a bold and daring duet in which the audience is treated to the alternating voices of the healed one and the healer.

John S McGovern, PhD., Clinical Psychologist and Faculty Member, Stanford University School of Medicine, Department of Psychiatry and Behavioural Sciences.

It is priced at $22.00 which is £13.75 plus £1.25 postage. £15.00 – please send cheque to Secretary. We are offering this to paid up members for a minimum donation of £10.00 including postage (while stocks last).

Dorothea – our grateful thanks for this kind donation. We wish you every success with bringing out the paperback version in three months time, and thank you for including Lincolnshire Post Polio Network details in this.

Dorothea’s email address is nudelman@mercury.fhda.edu

LINCOLN CITY FC CHARITY GALA DAY

Sunday 3rd August 1997 10.00 – 4.00

at Sincil Bank, Lincoln

VISIT OUR STALL AT THIS EVENT

Pick a playing card – Item on each card on table. If anyone would like to donate any items for this – we have the cheaper items, but we need a few 50p to £2.00 items. Money, plants, toiletries, bottles and tins etc will all be welcome. Items can be brought on the day, just let us know in advance please. If you can help on day, please ring.

LINCOLNSHIRE BRANCH British Polio Fellowship DIARY DATES….

Saturday August 16th 1997

SUMMER BBQ

12.00 noon to 5.00

Ancaster Day Centre Boundary Street, Lincoln. Thursday 23rd October 1997

ORGAN RECITAL BY COLIN WALSH

Organist and Master of the Choristers at Lincoln Cathedral

Monthly Meetings

Ancaster Day Centre, Boundary St., Lincoln 2nd Monday of every Month.

September 8th Meeting Indoor games practice for

Chess, draughts, darts, scrabble, dominoes, indoor bowls

Contact Secretary Barry North – 01724 276676

Visit our Stand

50% to us – 50% MRI appeal

Pick a card – cakes – plants at the

COUNTY HOSPITAL GALA Lincoln & Louth NHS Trust

Saturday 9th August 1997 11.00 – 3.30

Fun Dog Show Lincoln Hospitals Band

Nicola Withers School of Dancing Uncle Ron – Children’s magician Lincoln Wrestlers

Variety of Stalls BBQ – Pony Rides

Tombola – Raffles- Jugglers Fireman Sam or Welephant Restored engines and vehicles Car Parking £1.00 Entrance Free

Proceeds to MRI ‘SeeMore’ Scanner Appeal

My Story – Miss Annie Wilkinson – aged 82

I read with interest ‘My Story’ in the Torch by Ruth Bitiman of Pottsville. (An American PPS Newsletter).

I realise how fortunate I have been over the years, considering I was completely paralysed, and I had no specialist treatment. My mother massaged my back and legs, after I had gradually got back the use of my arms. I was 11 years old and could not stand let alone walk. Then in 1938 I got into the hands of Mr. Frank Holdsworth of Sheffield (later he became Sir Frank Holdsworth) who operated on my leg, ankle and right knee, and got me walking with a calliper my right leg, and two sticks. The muscles of my right leg were very weak and the circulation very poor, resulting in chilblains on my leg and foot in winter. In 1952 I fell on frost and snow fracturing my left femur, then I got into the hands of Mr. Thomas at Lincoln Hospital. When the fracture united, he operated on my right knee, since then it has been permanently stiff. I had a job as a housekeeper in a farmhouse until I retired at 60 years of age. I walked round the house with one stick and used a trolley for a lot of things. When I retired I got a ‘warden care bungalow’ on the outskirts of Market Rason and carried on as usual until about 4 years ago. Swollen legs etc, which eventually got a knock resulting in one ulcer that has spread.

I had used my left hand and arm a lot with a stick in my right hand and suddenly found myself dropping plates etc. All this I put down to old age. During the last year I’ve had blood tests for Anaemia and Thyroid and now am on pills for both. Three months ago my thyroid dose was upped from 25mg to 100mg daily and I am beginning to feel much better. The last time I saw my Consultant, he said ‘The infection in my right leg hasn’t cleared up and we’d start some new treatment.’ After two dressings my district nurse’s remark was ‘Wonderful’! It’s a very painful treatment as the worst ulcers are just above my ankle. I know arterial ulcers are very difficult to heal so daren’t raise my hopes too high. The Market Rasen Group of Doctors offer an annual check up to patients at the age of 75 years.

I do all my own cleaning and washing and cook for myself. I have my kitchen fitted to suit my needs. I now walk with a tri-walker, but haven’t been out with it much this winter.

If anyone would like to write to me and swap stories of the past then please send them to our secretary who will pass them on.

Annie – Market Rasen, Lincolnshire.

Ask Wayne, RRT Respiratory Questions.

I am a Registered Respiratory Therapist from the great state of Tennessee, and if you had polio, the chances are, we are approximately the same age. I was educated at Duke University’s School of Respiratory Therapy, Durham in North Carolina, in the mid 60’s. Following the completion of my training, I spent the next 25 years becoming familiar with emergency, and critical respiratory care. Most of my experience has been in the area of the care and management of patients receiving some form of mechanical ventilatory support. Recently, I accepted a position with a large American firm, who employ therapists to provide respiratory care, and rehabilitation, in the home, and/or in nursing homes.

During my first month with the company, I found that I was tasked with providing care to a woman we shall call Miss M. She had just been admitted to our facility from the local University, and was referred to my service. She had an experience in which her airway became completely obstructed, which led to respiratory failure, requiring ventilatory support for approximately two weeks. Before that day, I’d been fairly confidant that nothing could come through the door that I hadn’t experienced, yet here I was face to face with something called Post-Polio Syndrome. I ‘d known about polio, as a child, and remembered the other kids that had suffered through it…. But from a professional point of view, this was a disease that no longer existed for me. I honestly had barely heard of PPS, and now I was faced with the responsibility of caring for someone with this problem. All the respiratory modalities and tracheostomy manipulations were routine, but, how would I relate to her if I didn’t feel confident in my knowledge of her problems? How could I tailor a program of respiratory rehabilitation for someone, whose medical condition was unfamiliar to me? More importantly, how could I hope to gain her confidence, when my inexperience with PPS must have been terribly obvious. I decided to go to the computer, and power it up just as soon as I got home,

and seek help if it was out there. Well, I did………. and it was.

I called out to the internet, and pleaded for references, and something popped up regarding the Lincolnshire Post-Polio Network…. Never thinking such a group would be outside the US, or caring, I decided I had my help close by, and I was going to go there. My message indicated that I was now caring for a patient with PPS, and was seeking help to learn more. Well, to make a long story short, in these few months of research I have made at least one dear and life-long friend, and fairly buried myself in reams of paper on the subject. So much so, that a pulmonary physician recently referred to me as an expert on how PPS effects the respiratory system. Now, before you think I take pride in that comment, let me tell you that we should be collectively shocked by the lack of awareness most health care professionals have regarding PPS, particularly if my brief

research could possibly qualify me or anyone as an expert. But I suppose I should get to the point. I am not an expert on the subject of PPS, but I soon hope to be, for the sake of Miss M, and everyone else who may be impacted by my care. Which is why I’ve decided that pay-backs are due. It is time for me to pass on some help on behalf of those who spent time teaching me about PPS. I understand from already corresponding with some of your members that you are concemed, or even frightened by the potential for future needs for ventilatory support. Even if you’re in denial, the thought must have occurred to you….. It’s normal… Having overcome the childhood fears, pains, and rehabilitation, …….only to be faced with these same symptoms again is reason enough to fear. Well, information is the answer to everything. The unknown is what we all fear, isn’t it?

• Do you wonder why you’re having trouble swallowing?

• Do you suddenly awaken after awful dreams of smothering?

• Wonder why you can’t sleep very well at night, but find yourself dozing throughout the day?

• Wonder why you wake up with a sore throat in the morning, which then seems to go away

by lunchtime?

• Do you sleep better on one side and not the other?

• Are you having trouble with breathing after suddenly awakening?

• Are you currently on a ventilator at night, or all the time, and have some questions?

• Are you afraid that being on a machine to assist your breathing or keep your airway open

will make you less sexually attractive to your mate?

If you have wondered about any of these things, you’re not alone. Large numbers of people all over the world have been concerned about such things, and somehow feel better knowing they’re not alone, and there are many of us who care and will take the time to respond. Here’s your chance to get some answers, and perhaps even conquer the fears.

Please send any questions you may have about these topics or any respiratory related events or areas of concern, by post, fax or email – and all will be responded to, when they arrive. We would like to print some of the questions and answers for the benefit of others reading this. Please tell us when you contact us if you would not want to see yours in print, and we will respect that. My wish is merely to be of assistance to you and nothing more. Please remember, that knowledge is the key to reducing the fears and taking control of the PPS dragon. I ask only that you let us be of assistance.

Until then, I wish you well, and the best of health…… Respectfully yours,

Wayne, RRT, Tennessee, U.S.A.

Lincolnshire Post-Polio Network

A Post-Polio Information Service for Polio Survivors and Medical Professionals.

Website – http://www.zynet.co.uk/ott/polio/lincolnshire/ Our Website – which is like a large book and can be read, downloaded and printed by anyone connected to the Internet. It is indexed as follows:-

Site Overview

Library Catalogue Index Quick Index Library by Content Library by Source

Other Post-Polio Libraries on the Internet Other Post-Polio Articles on the Internet Books and Periodicals

Online Journals

Information about the Lincolnshire Post-Polio Network Directory Index

Post-Polio Organisations and Groups worldwide

Internet Discussion & Support Forums Newsgroups, Mailing Lists, Online Chat Room Offsite Articles

What’s New Page and Email Update Notification Service

NEW EMAIL UPDATE NOTIFICATION SERVICE:

If you wish to receive email notification of changes to this site please email LincsPPNUpdate@loncps.demon.co.uk with the word SUBSCRIBE in the body of the email. You will receive update notices as bcc’s or blind carbon copies. This means that your email address will not appear in the headers of email to other subscribers thus ensuring your privacy.

Words that do not exist, but maybe they should…

Accordionated adj. – Being able to drive and refold a map at the same time.

Aquadextrous adj. – Possessing the ability to turn the bathrub faucet (tap) on and off with your toes. Carpetpertuation n. – The act, when vacuuming of running over a string of a piece or lint at least a dozen times, reaching over and picking it up, examining it, then putting it back down to give the vacuum one more chance.

Disconfect v. – To sterilise the piece of candy you dropped on the floor by blowing on it, assuming this will somehow ‘remove’ all the germs.

Phonesia n. The affliction of dialling a phone number and forgetting whom you were calling just as they answer.

Pupkus n. – The moist residue left on a window after a dog presses its nose to it.

Michael R Well PhD. Professor, Dept of Biology

University of Wisconsin-Eau Claire, WI, USA.

Some questions to God…

Dear God – In school they told us what to do – who does it when you are on vacation? – Jane. Dear God – Did you mean for the giraffe to look like that – or was it an accident? – Norma.

Dear God – Instead of letting people die and having to make new ones – why don’t you just keep the ones you have now? – Jane.

Dear God – who draws the lines round the countries? – Nan.

Dear God – do you really mean ‘do unto others as they do unto you’? – Because if you do then I’m going to fix my brother. – Darla.

Dear God – We read in school that Thomas Edison made light. But in school they said You did it, bet he stole your idea! – Sincerely Bob.

Dear God – It rained for our whole vacation and is my father mad! He said some things about You that people are not supposed to say, but I hope You will not hurt him anyway. – Your friend (but I am not going to tell you who I am).

Dear God – Maybe Cain and Abel would not kill each other so much if they had their own rooms? It works with me and my brother – Larry.

Articles from our Online Library

The following articles are reprinted in full in the edition of this newsletter that is distributed via the

postal services. If you are printing this web edition for further distribution, please print the library articles as well and attach them to the newsletter.

Be True To Your PPS And Your Teeth Won’t Be False To You:

Preventing Complications In Polio Survivors Undergoing Dental Procedures

Author: Richard L. Bruno, Ph.D.

Originally Published: PPS Monograph Series. Volume 6(1):1-8. Hackensack: Harvest Press, 1996.

Unfortunately, only a handful of specialists treat Post-Polio Sequelae (PPS) – the unexpected and often disabling fatigue, muscle weakness, joint pain, cold

intolerance, and swallowing, sleep and breathing problems – occurring in America’s 1.63 million polio survivors 40 years after their acute polio. However, all medical professionals need to be familiar with the neurological damage done by the original poliovirus infection that today causes unnecessary discomfort, excessive physical pain and occasionally serious complications with surgery. This is a brief overview to inform patients and professionals about the cause and prevention of complications in polio survivors undergoing dental surgery.

Dr. Henry writes…..about Bulbar and spinal polio

Originally posted to the SJU Polio mailing list.

Bulbar polio involved the brain stem where the centers for the cranial nerves are located. The cranial nerves involve smell (olfactory), vision (optic), three cranial nerves control the various muscles that control eyeball movements, the trigeminal nerve and facial nerve which innervate cheeks, tears, gums, and

muscles of the face,etc, the auditory nerve which provides hearing, the glossopharyngeal nerve which controls in part swallowing, and functions in the throat, another cranial nerve which controls tongue movement and taste and one that actually sends signals to the heart, intestines, respiratory(lungs) and the accessory nerve that controls upper neck movement.

TAKE A BREAK – ISSUE 30 – DATED 31.7.97

This magazine has an article about Leicestershire Post-Polio Network Member – John Splevings – and his Post-Polio problems. Name and address and 3 first class stamps to:-

Leicestershire Post-Polio Network

PO Box 30 Leicestershire LE1 7ZX

helena.edwards@virgin.net

james.mcvay@virgin.net

POLIO CONNECTION OF AMERICA

PO BOX 182 HOWARD BEACH, NY, 11414 TEL (718) 835-5536 <URL:http://www5.ios.com:80/~w1066/>

Have published 3 Yearbooks, ’95,’96,’97. – 50 pages each A4

We now have one copy of each of the yearbooks and they contain many interesting and informative articles on PPS. If anyone would like copies please get in touch with us before September 3rd 1997. These will then be ordered. Cost will be £8.00 each including postage.

Letters to the Linc-Pin

Dear Linc-Pin

I am wondering about being recommended for Physiotherapy. What will it achieve?

In the beginning it was sessions of ‘try harder, stand straighter, more effort..etc…’ and we did, but to what avail? Nerves knocked out by polio still resulted in deformed limbs, withered muscles, dropped feet and hands. With the best will in the world, all that effort was often to no avail.

Then came the middle – more physio after months of corrective surgery, and my original problems still existed. One of the ‘ops’ was to correct a dropped foot. It took 3 ops to get it fixed and stay fixed. Net result a foot fixed at such a completely flat level that it is impossible to buy shoes!!! Only flat pumps which won’t stay on – no muscle power.

Now the autumn (dare I say end) of our lives we all seem to be afflicted with pain, fatigue, muscles that refuse to work, reduced mobility and falls – then I was told by a doctor ‘PPS does not exist!’ but no other name has been suggested for my problems. Perhaps we should hold a competition for another name.

What worries me, is if the doctors don’t have the information, do the physics? Have they had any training regarding this, do they really understand my problems and why they are being caused and how will I know that what they want me to do is right for me??? So many questions but I want to know..

Flat-footed of Lincoln.

Dear Lincolnshire Post-Polio Network

I cannot thank you enough for putting together your LincsPPN website. I went to your site and found an incredible amount of information there on Post-Polio. I downloaded quite a bit to print out for some of my doctors and a few PPS folks I know to give to their doctors.

You have put a tremendous amount of work, research, and time consuming effort in order to produce this top notch newsletter, library and website. You have accomplished so much for so many.

My deepest respect and love

Eileen Revere, San Diego, California, USA.

Dear Linc-Pin Is this all there is?

Some years ago I was the bane of my family’s life! ‘Why must you be so cheerful in the morning mum?! – The only answer I could give them was because that was how I felt. That was how I’d always been. Since recovering from infantile paralysis at the age of 10, everything in my life had been a challenge. I was fortunate, I felt, because I hadn’t been left with any actual paralysis, just some weakness in my left arm, left leg and spine. As time went by these problems didn’t seem to be serious and I grew stronger. Sadly, I had to have a long bout of hospitalisation and spinal surgery in my late teens for scoliosis – spinal curvature. Having recovered yet again, the inherent determination seemed to become stronger. Nothing was going to stop me from doing whatever I had the strength and opportunity to do with my life. I raised a family of three – who’ve proved to be excellent parents and I have to say a credit to their parents. They’ve also provided me with wonderful grandchildren.

Things went well for about 25 years, give or take, the odd pain here and there! I’m counting the years of course from the year of my spinal surgery. Then surprisingly rapid deterioration took place.

I accepted that in growing older one had to expect the symptoms that one associates with ageing – but this was all beginning to happen to me in my late forties. Muscle and joint pain, less stamina, serious pain in upper vertebrae in neck and base of skull. Occasionally, extreme attacks of vertigo accompanied by neck and head pain. Another factor was the overwhelming tiredness I was feeling – unheard of in my previous lifestyle. After hoping for quite a long time that it would all go away (of course it didn’t), I broke my own code and saw a succession of consultants. Orthopaedic, neural, ears and eyes, etc. No-one could give me any answers – sometimes no sympathy or understanding either and certainly no-one mentioned the late effects of polio until fairly recently. Now in the mornings, the word cheerful doesn’t enter my vocabulary. After fitful sleep I become conscious and have to seriously think about which part of me to move first as there are so many bits of me that hurt. I’m taking the only medication that’s being prescribed for me, which is an anti-inflammatory tablet, without which I couldn’t get through my day. Never in a million years would I have imagined I’d depend on such things. I’m still trying to achieve things in my life though by running a small horticultural nursery, but at the ‘young age of 61’ I’m a bit fearful for my future. All I can say for sure is that by joining and becoming involved with the Lincolnshire Post-Polio Network I’ve learned more about the late effects of polio that from any other source, including numerous doctors, no matter how well meaning they’ve been. I certainly don’t know it all now as it covers such an enormous range of different problems for different people, but I am beginning to understand a bit about the changes in my own body and the reasons for those changes. The LincsPPN needs all the support it can get so all you fellow sufferers out there and any interested parties get in touch with us. You’d be amazed at the amount of information the Network has collected – some of which could help you with your own personal problems. We’re hoping to expand and achieve our Charity status in the next few weeks. With more support we could do more. How about getting in touch..

Regards to you all Yvonne Webb – Lincoln.

Editor’s Story

I caught Polio at the age of 5 in 1952 in Libya, and have no medical records – Consultant asked this year ‘then how do you know you even had Polio?’ Imagine my parents comments when I told them my having polio was being queried, after they had had to cope with my being rushed into isolation, have a spinal tap, told I had polio and watch me over the years struggle to overcome the leg paralysis.

I had multiple tendon transfers and big toe fusion’s at the age of 12/13 for dropped feet. Always falling over at school, as I tried to run, play netball, rounders, tennis. The operations made all the difference and on I went to lifesaving, judo, canoeing, lifeguarding, all sorts, all physical activities, despite my leg weakness. I never stopped. I even became a policewoman because the Doctor doing the medical had no knowledge of polio muscle testing, – of course they work once, but repeat the actions, now that is a different story. Imagine what happened at Training School when told tomorrow was cross country running and I said, I am sorry I can’t run. My Chief Constable asked for me to be given a chance, and I passed out with flying colours and I later passed a CID course. I married, had two children and retook all my lifesaving awards and qualified as an Advanced Swimming and Lifesaving Teacher. I have spent many hours each week doing voluntary work, with many different disabilities. I have certificates in British Sign Language for the Deaf and Deaf Blind. I never stopped, rarely had days off work even after breaking toes and minor operations, until 1988. A fall I had then caused me major problems to my neck and left arm. Tests done at the time produced strange unexplained results, but polio was never mentioned. I had an operation in 1994 and struggled to get going again, and my neck and left arm started playing up again. In early 1995 sudden severe pain in my left leg for no apparent reason, yet I was told it is referred pain from a low back injury and exercise and build on that daily. I did that and just got worse, x-rays and MRI scans produced nothing. And I asked the question ‘Does the fact that I had polio come into this?’

Light dawned, the Consultant said, ‘Oh, you had polio, oh there is something called the ‘late effects

of polio’ but I know nothing about it, I will send you to a neurologist, like another patient from my previous hospital.’ Imagine how I felt, polio back again…. Stunned, frightened, worried about the future.

I went straight to the Hospital Library, and from there to the Health Information Service. Two newspaper articles and the address of the British Polio Fellowship was all I could be given – it was enough. I read a story that fitted mine, maybe here were some answers. I have not stopped searching since. I correspond daily with many many Polio Survivors around the World. I email medical professionals abroad and they reply within 24 hours….what do I get in this country… two and a half years later and I still wait for another of the rounds of the hospital appointments, this time to another hospital and a different neurologist.

The money being wasted on these appointments and tests is phenomenal….. The tests are mostly being read by persons without benefit of knowledge of polio and PPS.

I am off to America in six weeks time to a Post-Polio Conference and to visit PPS Clinics and PPS Support Groups. CarolAnn from Canada, Millie and Sparkle from the States, PPSers I have met on the Internet, are coming to pick me up in Atlanta and from there we visit Louisanna, Alabama, Tennessee, Kentucky, Illinois, and then to Niagara Falls, and possibly Montreal. Then back to Tennessee. There is much to learn, much information to share and much to bring back. This is being done on a shoe string budget and only possible due to the generosity of Polio Survivors in offering their time, cars, houses. etc.

The World’s Polio Survivors and PPS Clinics are sharing their information with each other. Come on British Medical Profession – Wake Up – Time you got in on the act. Before you say it, not every symptom we have is Polio or Post Polio related but without a specialist holistic PPS Clinic how will we ever find out?

The glove is down on the table… Dear Linc Pin

I thought the following might be of interest to new members. A few years ago I developed a very low voice and sometimes it was painful and people couldn’t hear me when I called – some said it was useful…… I went to the doctor who sent me to a specialist. I had a camera put down my throat and was informed that there was nothing nasty down there and that was that. So what else could I do, nothing. Still had the low voice. Then I saw an article in a magazine about PPS. I thought that sounds like me, I might come under that…… so I asked my doctor if he would put me in touch with Papworth Hospital to see Dr. Shneerson. Dr. Shneerson said that the voice box down one side was not working… At last I had an answer to my problem, relief. He arranged for me to see a Speech Therapist and she loaned me a voice amplifier. I can now speak to my friends without raising my voice, and now after calling Bingo at the Village Hall, I have a voice – before I used to lose it for at least three days.

The Walking Stick Lady… Sturton by Stow Lincolnshire.

PS – I got some extra exercise today – moving furniture from a wheelchair which is not easy – why?

– horrible smell in lounge, and yes you guessed it another dead mouse…….

Dear Linc Pin

On behalf of our group I extend our sincere gratitude for the wonderful work you are doing in collating and disseminating information regarding Post-Polio Syndrome……. may we please confirm permission to use some of the articles on your site for our future newsletters.

David Hurse, Convener.

Post-Polio Support Group, Far North Queensland, Cairns, Queensland, Australia.

Editor note:

David, thank you for your letter – yes by all means copy as per information at the end of each article

– and we would be interested in a copy of your database of articles. It is only by sharing information around the World that we will all succeed in our quest for the medical help that we need. The new Physic, Sean East at the County Hospital Lincoln, who is seeing Post Polio patients was diving in the area last year. Such a small world …….

Dear Linc Pin

What happens now? I had Polio when a child and in the last few years have had new unexpected problems. Then I found out about PPS and am soon to start taking a drug for my fatigue. I thought I

was making cracks in the brick wall at last………. Now I find no Doctor can tell me whether or not it

will help. Am I just being a guinea pig?………….. So it seems as if someone has a trowel and is

filling up the cracks again, and I almost feel back to square one. That old brick wall of silence… nothing can be done, you must leam to live with it, and so it goes on…

For how long?…….will I still be alive when we get our first holistic Post Polio Clinic in the UK, I do hope so, but please I am getting on in years and before I die would help.

Dear Hilary

Very many thanks indeed for your e-mail and assistance. Maybe I should give a brief background to myself? I’m 43, got polio in Hong Kong in 1954 when I was a year old. I was paralysed for a year from the shoulders down. Then movement came back, after many surgeries in Scotland got walking reasonably well etc. I have a pronounced scoliosis but until last year’s operation coped well with life, happily married with 2 sons 22 and 16.

Finding out about PPS is very devastating as I feel it’s now controlling my recuperation and life, especially feeling very vulnerable with my breathing problems. The stage I’m at now since Feb this year is I ‘potter’ about the house, can’t do any heavy housework (most frustrating!), vacuuming brings on acute tiredness and breathing problems. I can only happily aim seeing friends for a coffee moming once a week, the rest of time spent recuperating from it. I can go slowly round and do the shopping on my good days, and do a lot of resting in between. In April I tried to ‘build up’ and went on the exercise bike for 3 days, twice a day for 15 minutes, but was floored by chest pain, breathing problems and acute fatigue only picking up feeling back to ‘normal?’ 3 weeks later. The breathing difficulties lasted a few days and that recovered so I was breathless only a few times in the day.

This alarmed me and I went to the Dr.’s here, a place called Gulf Diagnostics where there is a UK Internist and a USA radiologist. They only are equipped for diagnosis and not treatment. I needed to know from them how often I should exercise and when to start – I just had to get built up again from taking it easy all the time. They did a CAT scan on my lungs to see if the operation I had for collapsed lung from last year was responsible but all looked fine, so was a heart ultrasound. They sent me away with the USA radiologist saying he had heard of polio cases being troubled by past problems, perhaps that was what it was, but didn’t know anything about it.

Then I went on the Internet and found data and the Lincolnshire Post-Polio Network – thank goodness. Having read the literature my first thought was they were writing about me, then it dawned I had found my ‘lost tribe, family’, I was not alone! Last Monday I was having my weekly coffee moming this time at my house. I cleaned the house (usually the family does it), entertained, had a lovely time but on Tuesday was flattened with fatigue; Wednesday had the worst breathing difficulties for a long time hoping all day it would go away but it just got worse, till at night I had to send an SOS to Chris Salter asking for advice. Thursday after a sleep was better with only some ‘gasping’ throughout the day and chest tiredness, today Friday feel a bit more breathless than yesterday. I don’t know what’s going on inside but I am so grateful of any help, advice you can give me to make me breathe better and give me some rest from the great effort of doing so. I will do as you suggest and go back to the Internist tomorrow after our weekend but do not think I have any infection etc. I am sorry to bother you with this long history but must tell you I feel buoyed up that someone may be able to help bring me some relief, and look forward to receiving the question sheet and information from the Respiratory Therapist and the medical articles from Dr. Bruno, and others

for my Doctor. Thank you Chris and Hilary for extending to me the life line and for the time involved! Please let me know how I may reimburse you for your time and any phone calls on my behalf.

Take care,

love Debbie in Abu Dhabi.

Dear Hilary

Wayne came bouncing in my room today and brought me an email from you telling me all about your experiences with Polio, and I look forward to hearing from the lady in Canada and the others in the States that said they would write. I am so glad to have some new Polio friends, thank you for telling them about me..

I belong to the East Tennessee Polio Survivors Organisation and get their newsletter but cannot go to the monthly meetings any more. It is held in a classroom at Port Sanders Hospital in Knoxville a few miles from where I lived for a long time with my parents. Jeanette Barnes is the founder/president and is a Post Polio herself. She had the illness about the time I did, was completely paralysed and fully recovered. She had a normal life until a few years ago when she started developing weakness, like the rest of us. East Tennessee Polio Survivors Organisation, PO Box 1527 Morristown, TN 37814.

I don’t know just what Wayne told you about me, I am 56, so I’ll start from the beginning of my experience with Polio. It was in late August 1954, I had been horse riding with classmates when I began having very severe pain in all of my right leg, which continued all day and night. When I went to bed I started having a headache that was the worse I had ever had by morning. When I woke I went to my mother who is a registered nurse. She gave me some aspirin and a drink but I could not hold the tumbler. She put me to bed downstairs and called the doctor. He sent me straight to a local hospital for a Spinal Tap. Some time later the lab report came back positive for Spinal Bulbar Polio. We were in shock, my father cried, I didn’t know what to think. I was 14. An ambulance was outside ready to take me to the Isolation Hospital but the driver was so afraid, he would not take me and another had to be found.

My parents sat outside the door of my new room all afternoon while I twisted with pain and gradually lost the feelings, and in all muscles by night time. During the night I was put in an oxygen tent. I suffered the worst back pain I had had, hallucinated, had nightmares and could not breathe by morning.

In the early hours I was put in an iron lung, side by side with several others in a big room. We were watched and tended to by L.P.N’s who treated me very well and kindly for two months. The next two months I spent in a Rocking Bed which also forced air in and out of your lungs, but you had to do some of the work.

I was given daily baths and wrapped in Hot Pads which are wrapped in towels and put on arms and legs. After this treatment, I had exercise from a Registered Physical Therapist. She was working as an R.N. at a hospital in another state when she had polio in her legs. After her own recovery Mary Lou Wilson became a P.T. and exercised Polios. We loved her. She came every day and I found out what ‘tight muscles’ meant. Mary Lou used her own technique of exercising weak muscles called ‘Pumping the Muscle’. She really helped me.

The fifth month I was able to sit in a wheelchair and breathe by myself again. So, then I was sent to Alfred du Pont Institute in Delaware State just across the border. It is now 10pm and I am getting blurry eyed, I will start another letter soon and tell you the rest of my story.

If anyone would like to ask me questions about my treatment, or just write for fun – especially from England then I would love to hear from you, send letters via Hilary, or ask her for my address.

Love and Prayers – ‘Miss M’ Loudon, Tennessee, USA

To:- St. Johns Polio List – PPS – how old are we?

I figured out my age…….

Chronologically 46

Biologically	85
Mentally	12
Energetically	200+ (I hope this means TIRED)
Sexually	000 (This is irrelevant in my case!)

That all makes me 343+, but I have not figured out if a high score or a low score on this is good? And let me tell you, for 343+ years old, I look VERY GOOD!!!!

In prayer, Sister Jean Terese

PPS CONFERENCES

Atlanta, Georgia, U.S.A. Sep 12-14, 1997

BEEN THERE, DONE THAT, MOVIN’ ON A Post-Polio Conference Focusing on Quality of Life

Atlanta Marriott Gwinnett Place Contact:

Linda Sutherland at laslinda@mindspring.com Atlanta Post-Polio Assn Inc.

APPA Conference

PO Box 250566 Atlanta, Georgia 30325 (404) 350-7631 Fax (770) 232-7178

Editors note:- Am going to this one.

Calgary, Alberta, CANADA Sep 29 – Oct 2 l997

’97 INTERNATIONAL POST-POLIO CONFERENCE The Coast Plaza Hotel

Featuring Drs. Yarny Eulberg, Rubin Feldman, RL Bruno & NM Frick

“A fun conference with time for rest end sightseeing” Contact:

Mr. Vern Hamm at hammv@cybersur.net for E-mail BROCHURE – or –

Ms. Dodie Spittal Reny de Jong Southern Alberta PPS Support Society No. 7-11 Street NE

LINCOLNSHIRE VOLUNTARY CENTRE CENTRE NEWS BACK PAGE

SPOTLIGHT ON LINCOLNSHIRE POST-POLIO NETWORK

Who are the Lincolnshire Post-Polio Network?

We are Polio Survivors (not Doctors) who, after years of stable functioning following recovery from Polio, are experiencing new deterioration. In most cases these problems have been gradual and medically noted (not explained) over the last ten to fifteen years. In May 1995 at a Disability Sports Day in Lincoln, an overheard remark relating to “old polio” and breathing problems now being experienced by people who had been in iron lungs, lodged in our Secretary’s memory although its significance was not appreciated until much later. In November of the same year, following nine months of consultations without any answers, she asked a new Consultant, “could Polio be the problem?” The reply that another patient who had the same symptoms also had Polio as a child, began a trail of discovery. That observation led our Secretary to embark on a personal search for more information.

Post-Polio Syndrome (PPS) are new symptoms being experienced by Polio survivors who recovered from Polio many years ago. New fatigue, both physical and mental, muscle weakness, joint and muscle pain, cold intolerance and breathing and swallowing difficulties. They occur in as many as 80 percent of survivors of paralytic and nonparalytic Polio, typically 30 to 40 years after initial recovery from Polio.

Polio Survivors are typically high achievers who have worked hard in overcoming the initial after-effect of Polio. Many of us show little or no visible signs of having had Polio. Many of us have led very active lives. The message that we must decrease the overuse and stop the abuse of our damaged nerves, weakened muscles and painful joints is not an easy pill to swallow, even for the PPS aware.

Lack of awareness of PPS amongst both Polio Survivors and the Medical profession is a genuine problem not to be underestimated. There is unfortunately no test for PPS and therefore diagnosis can only be made after all other possibilities have been excluded and by a past history of having had polio. For the majority of us the fact that we had polio has not even been considered up to now, either by ourselves or Medical Professionals. Many who are not currently exhibiting symptoms continue life-styles that may ultimately lead to PPS.

For more information about the work of the Lincolnshire Post-Polio Network Contact: Hilary Hallam Tel: 01522 888601 Fax: 01522 885115

<URL:http://www.zynet.co.uk/ott/polio/lincolnshire/>

IF YOUR ORGANISATION WOULD LIKE TO BE FEATURED IN THE CENTRE NEWS SPOTLIGHT FEATURE TEL: 513564

LINCOLNSHIRE POST-POLIO NETWORK MEMBERSHIP FEES – £10.00 from 1st April 1997 to 31st March 1998

Bi-monthly newsletters – Information Pack – Please send to address below. All donations will be gratefully received.

Articles for publication by August 30th please – Publication date September 3rd 1997 Early due to visit to USA – report on this in November Newsletter. 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

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin976.html> Last modification: 10th April 2009.

Linc Pin Volume 1 Issue 6 Read More »

Linc Pin Volume 1 Issue 5

THE LINC-PIN

Lincolnshire’s Post-Polio Informative Newsletter No. 5 – May 1997

POLIO SURVIVORS STAND (sit) TOGETHER PSSsT… Are you listening?

We are Polio Survivors.

which means we had Polio in our earlier lives but overcame the consequences to the extent that many of us

show no obvious external signs of having had to do battle with the disease. Most of us have been fortunate and been able to reach high standards of achievement in our careers and personal lives.

Some of us are now experiencing functional decline,

in both polio affected limbs and those we previously thought of as unaffected.

We now have new muscle and joint pain and weakness, breathing and swallowing difficulties.

Our very real symptoms are varied and we accept that we could have other conditions and/or PPS.

However, most of us have not been assessed by PPS Specialists.

Our symptoms have been medically noted but unexplained for some years now. Everyone gets a little older each day, but we are beginning to feel much older than should be expected for our average age of late forties, early fifties.

We do not want to change jobs, give up work, retire early.

We do not want to give up sports, dancing, walking, decorating, gardening, etc. We do not want to have to ask for help to manage our homes.

We do not want to live on less money.

We do not want to start using, or reusing aids and assistive devices. If we can get assessed, diagnosed and are advised by PPS Specialists

that this is the right advice and it will help us to manage longer. Then we will do it.

Therefore we urgently need

A Multi-Disciplinary Holistic Post Polio Clinic – A Centre of Excellence, staffed by Polio and PPS Specialists.

Who will physically examine us,

take note of our symptoms, read our x-rays, MRI scans, EMG and NCS and other tests. Who will separate out our problems and manage our cases.

Who will refer us to appropriate specialists, for treatment advice, aids and assistive devices, counselling etc.

Who will provide hands-on training for future specialists

and have the opportunities to engage in much needed broad based research.

We have deteriorated unnecessarily for far too long and we want to live productive lives as long as possible.

We will not give up. We will not go away, We will succeed.

We never gave up when we had Polio. We will not give up now.

Lincolnshire Post-Polio Network

EDITORIAL – by Yvonne Webb

Hello again to LincPin members (and those reading this via the Internet around the World). As usual we’re still waiting for summer. We get a few beautiful days and we think it’s here and then we could well be back into March. The gardens still get on with growing well, including the weeds!! It means lots of work for us who can manage it, of course. Being the determined breed we are most of us keep plodding away at it.

Back to LincPin business now and I’d like you to read a quote from an article written by our dedicated secretary Hillary Hallam to be included in a Physiotherapists magazine.

‘We are not medically qualified. We are a self help group of Polio Survivors who are having problems. We know our own bodies, we have struggled with them for a number of years since the polio. We know what they did, how well they recovered and how we have used them. We know we are getting older but what we cannot explain is the rapid deterioration of our joints and muscles and our ability to carry on our normal lives. The medical profession did not understand polio back when we had it, and the same goes for now.’

I feel we can perhaps be charitable towards doctors many years ago when most of us had our polio but its disappointing to find that very little research if any, is done in this country into the late effects of polio. Britain always seemed to lead the field in scientific and medical discoveries in the past but over the last fifteen/twenty years or so the Australians and Americans seem to have taken a great deal more interest in the subject. Maybe finance has something to do with it.

I have to say though, that I don’t think that its all doom and gloom as at least two consultants that I’ve seen recently (albeit one for a different reason) were interested in what I had to say on the subject, and I felt they acknowledged that the problem does exist. Hopefully word will get round. We do have to be optimistic; we really don’t have a choice. We must keep working away steadily at getting information about PPS out to anyone who will listen to or read it. Also very important is our fund-raising efforts. Our committee group and local contacts are quite small at the moment but growing steadily. In the meantime functions such as coffee mornings, stalls at bazaars, plant sales etc., will all help in a very important way with stationery, postage and so on.

I wish all members and readers who may wish to join us, good luck and hope for the future.

PLEASE READ THE FOLLOWING –

ARTICLES PUBLISHED IN THE LINC-PIN.

Remember the opinions expressed are those of the individual writer(s) and do not necessarily constitute an endorsement or approval by the Lincolnshire Post-Polio Network. Although it does not provide an endorsement, it is provided as a service for those seeking such information. Always consult your doctor before trying anything recommended in this information or any other publication.

CONTENTS – Newsletter No. 5

Polio Survivors Stand (sit) Together. PSSsT… Are you listening?

Editorial and Items Published in the LincPin Endorsement.

Contents – Letter from Kernow by Chris Salter.

Money, £, $, Cash, Dosh, Ackers, Lolly, Sheckels, Bucks, Moolah.

I think I have PPS. Why? Judge for Yourselves.

From a lady in a hamlet in Lincolnshire.

Samples of other members comments.

Depersonalised letter to show your doctors if they are sceptical about PPS.

The Mayo, The Lancet and the Revolting Polios compiled by Helena Edwards,

Editor, Leicestershire Post-Polio Network Newsletter

plus added comment from R.L.Bruno PhD, printed in Neurology.

How to Bathe without getting Wet or Happy Slathering, by Ruthie.

What you should know about your Medications

reprinted with permission from Post Polio Support (Inc) Christchurch, New Zealand.

About my brief life in Lincolnshire by Michael Watson, USA.

Parents Blood – book arrived, short excerpts.

Polio Phone Pals – Membership Fees – Lincolnshire P-PN contact details.

LETTER FROM KERNOW by Chris Salter

As luck would have it, when the time arrived to write the third edition of this column, or to be more truthful when it was already half way out the back door, my attention was otherwise engaged. During the process of updating the LincsPPN Web Site I had noticed that some documents were not displaying correctly. Fortunately only the document details, for example the copyright notice, appear to be affected. Nevertheless it does not inspire confidence in the reader and must be resolved as soon as possible. Problem determination is a combination of diagnosis by exclusion and intuitive thinking, terms you will be familiar with in a different context. Often the exclusion part can be time consuming. It’s not unlike being given a jigsaw puzzle which has all the pieces of one picture but with some of the pieces from a dozen other puzzles mixed in! Well, now you have my excuse for the rushed nature of this column. I must return to my jigsaw puzzle sooner rather than later! However, I would not want you to be mislead into thinking that it is usual for our web site to have these sort of problems. In fact this is the first event of this nature that I have had to deal with since our sites opening which is just as well as there is more than enough other work to do. I may write in more detail on particular areas of web administration in future columns but I will describe briefly the main tasks involved in keeping the LincsPPN Web Site rolling.

In one sense it is very much akin to running a newspaper or magazine. The design of the web site is constantly under review as new material is added. Sometimes a catalogue section will become too large and will need restructuring. Sometimes a new article will come along whose content doesn’t

sit comfortably under any of our existing headings. The latter requires careful thought in order to arrive at a heading which will encompass some future articles. The work involved in adding individual articles varies. If the source document is paper it is scanned a page at a time. Each page then has to be processed by OCR (Optical Character Reader) software to convert the image of the text into text character code that the computer can manipulate. Some errors are introduced at this stage dependent on the print quality of the source document. Some of the more expensive OCR software (in the region of £400+) has a lower error rate with poorer quality print but most of our source documents tend to be average to good quality so I get by with standard software. The OCR’d text is then transferred a paragraph at a time to a web document. This is partly due to the format of a web document but mainly to facilitate proof reading. If you proof read each paragraph immediately after inserting it in the web document you are less likely to miss any errors. The medical content of our site demands that we take utmost care not to introduce any errors. If there are pictures and diagrams these are scanned separately and then processed by image manipulation software to ensure they display properly on computer screens. Finally the web document with any associated image files is uploaded from my PC to our web site. If the document is a library article it will also require several catalogues and index documents updating and uploading. Last but not least the What’s New page has to be updated and uploaded. In practice all uploads will be made at the same time as we don’t want someone selecting an article from one of the catalogues only to find it’s not in the library! Once I’ve confirmed that the uploads have been successful I send out the update notification emails to those that have subscribed to the service.

I participate in four post-polio mailing lists on a daily basis, a task I share with Hilary. Additionally I monitor one post-polio and three UK health and disability newsgroups. Mailing lists and newsgroups can be thought of as discussion forums. I also participate in five mailing lists concerned with issues surrounding medical and healthcare information on the Internet. One of the lists is the private discussion forum of the British Healthcare Internet Association of which we are a member. This is an important part of my work as Web Administrator as we have to keep abreast of developments in this area especially with regard to possible future certification schemes. An example might be an index of certified medical web sites backed by such authorities as the BMA in the UK, the AMA in the US and equivalent organisations in other countries. Such ideas are currently limited to discussion at national level but it’s essential to ensure that consumer organisations such as ourselves are not excluded from any such schemes. Neither can the spinoff benefits from having

I get various emails concerning the site that require replies although thankfully only a fraction of the number that Hilary receives daily! This is probably the hardest task for me as I am a slow writer. Publicity has been relatively speaking on the back burner for a while. I have a long and growing list of medical web sites that I must check out with a view to getting our site listed where appropriate. It’s time consuming but essential work.

I promised to explain the Cornish connection but I fear I have run out of space again. It will have to remain as mysterious as the Cornish landscape for a while longer! Only yesterday I looked out the window and saw a four masted square rigger anchored in the bay. Don’t worry! It was the real thing…

What to do if your Walking Stick is out of reach….. Hide under the covers?

There I was all snuggled under the covers when thud, ooooh, it must be nearly morning that is the cat is back from her nightly tour. Wait….. whats that….. the sound of ‘crunching’…… I took a peep over the covers and horror of horrors there was my cat with tiny feet poking out of her mouth. I looked for my trusty walking stick…. oh dear, out of reach…. Oh well, fingers in both ears and under the covers and wait. Aahhh… she is settling down for a sleep, another quick peep….. Thank goodness, breakfast is over and not a sign.

Jean, Sturton by Stow, Lincolnshire. (PS she isn’t really 21, its a porky pie – little lie)

MONEY, £, $, Cash, Dosh, Ackers, Lolly, Sheckels, Bucks, Moolah.

How many other versions are there? What it all boils down to (golly gosh the Americans reading this will have fun with all the English idioms we use) we need money to carry on with the work we have started. The trouble is that there are so many self help groups and other organisations all needing money, and we are all trying to get it out of the same pot.

Unlike Leicestershire Post-Polio Network (name changed to add Post- 18.5.97) who two years ago received a start up grant of three computers and running costs for three years, we have been unsuccessful in our bid for funding from Lincolnshire County Council. No new grants to new organisations due to financial resources. We have sent out many letters asking for grants to support our work. Some have replied that they are unable to help, some are holding meetings and we await a further response, some have just not replied at all. We have more letters to write. If you know of anywhere we could apply that we might not have thought of then give us a ring. Maybe you know a firm that would sponsor some of our work, an issue of the newsletter, a Mg of space on our Website, printer ink cartridges, envelopes, etc. All sponsorship will be acknowledged on our Website and in our newsletters.

It is for this reason that the Committee have decided that we must ask for a yearly membership, and for ease of accounting have taken this from April 1997 to March 1998. We have decided on a figure of £10 and for that you will receive 6 bi-monthly newsletters containing a considerable amount of PPS information. This £10 will also cover the cost of one copy of our latest Information Pack and a membership rate for copies of medical articles not in our newsletters. See attached list [Our library catalogue by source – LincsPPN Web Administration]. Many of our members are now unable to work and it is not always easy to find £10 at one go, and therefore we are quite happy to have this in two cheques, the second dated up to three months later than the first. Ideally we would like to receive membership fees as soon as possible but if you wish to continue receiving the newsletter after the July issue then we must hear from you by the 31″‘ August 1997. We will remind you in the next newsletter.

This will give us a base income to work from but will not cover all our running costs, or allow for repair or replacement of equipment – at present personal to committee members. Jean is already having a table-top at Sturton by Stow fair on Sunday May 25th , other committee members are planning similar events in their area, which we will include in newsletters. We would like to suggest that you do a little gentle arm bending of your friends and family and see if they would organise something where you live. Collect stuff for a car boot, a coffee morning, a table at your local village fair, asking an organisation you are involved with to hold a raffle for us at one of their events, there are many ways and every £1 will count. A book of second class stamps will be just as gratefully received as a large cheque.

To give you a little idea of all that we are doing see Chris’s ‘Letter from Kernow’ which explains all that is done via the Intemet. Then there are the newsletters to collate and send out, phone calls to take and information to be sent out to new members, letters to be sent out promoting the awareness of PPS and campaigning for appropriate PPS medical assessments and treatment, searching local and national papers for events that we could go to and articles to add to our collection, data-basing all the information that we have collected, etc. You can all join in with this, if you see something that you think we should know about then give us a ring, if you are visiting Lincoln and have a couple of hours to spare then there are many little jobs to do.

I think I have PPS. Why? Judge for yourselves.

From a lady in a hamlet in Lincolnshire.

It was in 1938 when I was nearly eleven and working for my High School Certificate. I was at a local dog show when I somehow knew, whilst queuing , that I would be unable to run with the dog around the ring. My neck hurt and I felt ill. I was taken home, put to bed and during the course of the next few days my left side became paralysed. I could not even lift my head from the pillow, and had to be ‘turned’ regularly by my mother (an ex nurse luckily). I still remember trying to eat mince lying on my back unable to raise my head. (I hate it now). My father called in two doctors, who proclaimed I was paralysed and should have a leg brace. Again luckily my Grandfather and Uncle were both doctors and my father had done two years training at Kings College before giving it up in favour of engineering. They all disagreed with these doctors, saying the muscles would waste. I was hauled about, put in a steel corset for my spine (no medication) and taken to a children’s hospital in London. I remember my bowels being paralysed for a month. In 1939 I spent about three months in this hospital (including Christmas) was blindfolded, stuck with pins and tickled with feathers on my left paralysed side by many Interns. I was sent home, Infantile Paralysis, get on with it.

I then progressed to dragging myself round the room, clinging to any furniture available as there were no aids available. I used my Grandfathers Walking Stick, it was very painful now. Eventually my father talked to the local masseur and nearly every day for a year my mother walked me in my wheelchair to her clinic for treatment. She was very hard on me, but also kind. She managed to get me standing upright without assistance, and walking a few steps. Exercises at home every day, trying to lift myself from the prone position and raise my left leg. Sandbags on my ankles. Never achieved my goal.

Back to school at 14 in a wheelchair (I had been tutored at home meanwhile), eventually walking with bad limp and always watching out for kerbs. I was teased a lot as I could not run, the only thing I could do was walk a little, cycle eventually if placed on the bike and swim if I was lowered in a harness. I thought I was cured. I left school and found a sitting down job. Polio was never mentioned and I began to think of myself as normal, but most of all I missed dancing and running.

Between 1941 and 1987 I had no real problems apart from always a dull ache in my left leg and arm and a slow limping walk. In 1987 I suddenly experienced very bad muscle pains in both legs. Put it down to too tight ski pants, and after three months they decreased. This all happened when I found out I was being made redundant after 40 years, but after three months the boss started a new firm and took me back on.

In 1993 in the March the muscle pains returned, both legs, thighs. Trouble with stairs. In May I visited my local GP. The first time for any reason other than flu shots for over forty years. Had no tests, ‘maybe its Fibromyalgia’. Previous records were all destroyed. ‘How did I know I had had Polio?’ I was dismissed with ‘Its all in your mind.’ When I could not even manage the stairs to his surgery. Three months later, still in pain, I saw another doctor at the same surgery. He was very concerned and ordered lots of blood tests, arthritis, rheumatism, etc. All negative except for ‘you have abnormal muscles in your legs’. I showed him various PPS leaflets which he read with no comment. Painkillers just did not work.

In 1994 my GP referred me to a Consultant Rheumatologist. Thorough examination, endless blood and other tests, all negative. Except for ‘you have abnormal muscles in your legs’. ?PPS ignored.

In 1995 another Consultant declared himself ‘mystified’. I was sent to another City for tests and a registrar there seeing me walking across her room immediately said ‘Polymyositis’. Which I knew was fatal. Three months later I was sent for again, the biopsy was negative and the electrical tests said ‘we cannot get below the polio barrier in both legs’. Both legs, but I only had polio on one side!!! BUT it was not PPS, Polio had been wiped out in England years ago. Again they said ‘We are mystified’. I struggled on for the rest of that year. Exhaustion set in and my social life was nil. Even

my daily had to help me out of bed to the bathroom on odd days. I had a rail fitted in the toilet as was using the door handle to stand. It came off!!!!.

In 1996 I asked my GP could I be referred somewhere else. He said, ‘No good, they don’t know about PPS’. So I decided to pay privately and off I went with my x-rays and notes. One look at my spine and they pronounced ‘A typical polio case’. (Like an S bend, left shoulder blade like Richard III) and said I should not be standing or walking as my spine was so bad. This had been said before, but I still had no pain in my spine. They were more interested in the fatigue, not the fact that by now both legs were affected, and I was unable to lift them from the ground whilst sitting and the pain was so intense that it made me scream.

Earlier this year I was sent for to spend three days in this hospital for tests, including a sleep study and MRI. ‘You are not sleeping at the proper level, your MRI shows a nick at the base of the spine which is arthritis’ (no pain there). The neurologist said ‘I do not think you had Polio at all, it must have been something else. Why didn’t you wear a caliper?’ They made no further comment when I told them about my doctor relatives decisions. They could maybe give me injections for the pain and medication for the exhaustion. My GP has still not received a report from them, six weeks now. They now want me back for more tests for the exhaustion which they say is nothing to do with the Polio ‘I say I had’, and they have no answer to the abnormal muscle test results. They make nothing of the leg twitches whilst I sleep.

I am extremely frustrated. Why will all the medical profession not listen . I may be getting older – aren’t we all – but I know my own body. My life style has been turned upside down and I know I had infantile paralysis in 1938. Why do I have to battle so hard for an answer?

‘Mystified’ ‘Still mystified’

‘Its all in your mind’

Fibromyalgia, no. Then Polymyositis, no. Arthritis and Rheumatism, no… ‘We can’t get below the Polio Barrier, but PPS does not exist.’

‘X-rays show definite Polio spine, should not be walking upright’ ‘Did you really have Polio, maybe it was something else?’

The fact that I cannot cross my right leg over the left is immaterial. The fact that my left leg has collapsed under me three times in the last eighteen months is due to the fact that I have been overdoing it but I have only been out socially three times in the last four years because of the pain and exhaustion. The fact that I now have no control over my thighs and drop into a chair like a sack of coal is ignored.

I am so frustrated. Why will the medical profession not believe me that I had Infantile Paralysis, especially when my grandfather and uncle were both doctors and helped with my treatment?

Why will they not listen to me and take all my symptoms into account? Why were the old medical records destroyed? Why does the diagnosis keep changing? Why can’t they give me a firm diagnosis for all my problems? When they do make a decision to give me some treatment how long do I have to wait before they tell my GP of their decision? Why is so much time, energy and money being wasted? Why do I have these symptoms, I have not been physically ill, this wasn’t gradual like just getting old, it happened overnight, I know its not just age, I have had this body a long time and I know how it feels.

Do I have to be an Emily Pankhurst,? Do I have to travel to America to get help’?

Are we really ready for the next millennium, or are we still stuck in the last? This whole situation is utterly disgraceful.

Meanwhile I soldier on as I did all those years ago. At least I now have other Polio friends to talk to who understand what I am talking about. I think the idea of Polio Phone Pals is brilliant. It is

wonderful to be able to offload on a bad day to another polio and in turn be the ear for their bad days. Stress does not help whatever we have wrong with us. I don’ t mind what you call it, just help me manage my symptoms and live the rest of my life to the fullest possible.

Samples of other members comments:

• I was diagnosed by a top neurologist with PPS a year ago. Can you give me a list of PPS

specailists in my County?

• I have had a PPS diagnosis for many years now, but still can’t get treatment for my

problems. Can you recommend a hospital?

• I have been told that ‘the pain is all in my mind, I am imagining it, and I have been taking

antidepressants for years’, now I learn about PPS. Hooray, I am not nuts after all.

• I have had many appointments and tests and a continual change of diagnosis but the fact that

I had polio has never been mentioned.

• I am now on my seventh diagnosis, and still they won’t consider the polio, what a waste of

money? Is there anywhere in this country that I can be referred to?

• As I have no records of having had Polio – I had a lumbar puncture and paralysed legs but

was left without easily visible signs – they are questioning that I have even had Polio!!!!!

Whatever is wrong with me they still haven’t given me a firm diagnosis.

• The answer to the new pain in my legs and increased difficulty walking was ‘Don’t walk’.

• The doctor said ‘I used to believe PPS existed but I don’t anymore since reading an article six

weeks ago’.

• I gave my GP the information and he threw it in the bin without reading it.

• When I mentioned PPS I was patted on the head and told not to worry about that.

• PPS is all conjecture and so is ME. They don’t exist.

• My GP keeps saying ‘I will refer you to a PPS specialist if you can find one’.

• After I had told my polio story, the good years in between, the problems now and replied to

what I think might be the cause, the answer was ‘you are probably right’.

• Physios saying ‘We know nothing about this, we will have to work together on this’.

• My Dentist is grateful for the information, he says it explains why he has always had

problems giving anaesthetics to people who have had polio.

The following is a depersonalised letter which may be of interest – done at the suggestion and with the permission of Professor Richard L. Bruno PhD

KESSLER INSTITUTE FOR REHABILITATION, INC.

300 Market Street Saddle Brook, New Jersey 07663 U.S.A. (201) 368-6057

Email PPSKIR@AOL.COM

Note. Professor Bruno has relocated and his new email address is PPSENG@AOL.COM. For further details see The Post-Polio Institute Englewood (NJ) Hospital and Medical Center in our Specialist Clinics Directory.

POST-POLIO REHABILITATION AND RESEARCH SERVICE Office of the Director

21 February 1997

Dear Polio Survivor:

1) You were asked if you have evidence that you in fact had polio.

[Fill in here your past history of Polio]

2) You have been told that one had to have significant damage from the polio and muscle

atrophy to have PPS.

Neither the severity of the original polio infection nor muscle atrophy, either due to the original polio or late-onset atrophy – are required for the diagnosis nor are predictors of PPS. The postmortem studies of Professor David Bodian of Johns Hopkins University in the 1940’s showed that anyone who had paralytic polio lost on average 50% of their anterior horn cells but required the death more than 60% to demonstrate any paralysis (Bodian D. Histopathological basis of clinical findings in poliomyelitis. American Journal of Medicine, 1949; 6: 563-578.) However, Bodian also found that at least 90% of all anterior horn cells were in some way affected during the polio infection (Bodian D. 1947. Poliomyelitis: Neuropathologic observations in relation to motor symptoms. Journal of the American Medical Association, 1947, 134:1148-1154).

With regard to the prediction of PPS, our research and that of other investigations (see Klingman, et al. Functional Recovery: A major risk factor for the development of PPS. American Journal of Physical Medicine and Rehabilitation, 1988, 45:645-647) show that it is the degree of original paralysis plus the degree of recovery that predicts PPS. Klingman showed that 79% of the variance of PPS symptoms “could be accounted for by recovery alone.”

Our research has also shown that physical overexertion is also a primary factor in triggering PPS in 96% of subjects in the first American National Survey of Polio Survivors (Bruno RL, Frick NM: Stress and “type A” behavior as precipitants of post-polio sequelae. In: Halstead LS, Wiechers DO (eds): Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY, March of Dimes, 1987, pp. 145-155).

3) You have been told you must use your limbs and that, if you did not, then the muscles

would wither away.

This advice is particularly inscrutable. All of the world’s medical research and clinical literature on the treatment of PPS shows that persisting in physical exertion in the face of new symptoms, and especially the prescription of exercise, continue the downward progression of PPS. The recommendations for energy conservation and assistive device use provided you are just right (see Young GR. Energy conservation, occupational therapy and the treatment of post-polio sequelae. Orthopedics, 1991; 14:1233-1239) . A two-year follow-up study of patients treated by the Roosevelt Institute at Warm Springs showed that patients who refuse to implement such suggestion have pain and fatigue increase and lose more than 2% of muscle strength per year (Peach PE, Olejnik S. Effect of treatment and non-compliance on post-polio sequelae. Orthopedics, 1991;13:1199 -1203). Patients who implemented energy conservation and assistive device use actually gained muscle strength over time.

Our just-completed follow-up study of patients treated by the Kessler Post-Polio Service since 1990 shows a 76% increase in muscle weakness over 16 months in patients who refuse to implement energy conservation and assistive device use. Patients who do implement these suggestion report a 21% decrease in muscle weakness.

4) You have been told that PPS is all conjecture and that PPS is not a problem in Lincolnshire.

I would have readily agreed that PPS was all conjecture in 1983. But after four international symposia and thirteen years of research published in journals including Neurology, the Archives of Physical Medicine and Rehabilitation, the American Journal of Physical Medicine and Rehabilitation, the Journal of Rehabilitation, the Journal of the American Medical Association, and the Annals of the New York Academy of Science, there is no longer any conjecture about the reality of PPS.

With regard to the prevalence of PPS in the U.K., 74,280 cases of polio had been reported to the U.K. Communicable Disease Surveillance Centre between 1912 and 1961. As in the United States, the ratio of polio cases to actual notification of the C.D.S.C. was quite low before the

large epidemics of the late 1940’s, your government describing notification as “far from complete.”

The cases of polio reported to our Centers for Disease Control was 480,000 during the same period, with notification also being described as unreliable since U.S. physicians were not required to notify the C.D.C. of polio cases until 1952. It is not surprising then that 1987 U.S. Department of Public Health National Health Interview Survey calculated that there were 1.63 million Americans alive today who had had polio. It is likely that the actual number of living survivors of polio in the U.K. is closer to 250,000.

With regard to the prevalence of PPS, the recent survey of the membership of the British Polio Fellowship found the incidence of PPS to be 77%. Therefore, between 57,000 and 192,000 British polio survivors are experiencing the same symptoms that you report.

I cannot encourage you strongly enough to be physically examined and to immediately implement all of the recommendations made by your Doctor and your occupational therapist and any other ideas of which you can conceive to save your remaining polio damaged motor neurons.

I hope I have answered your questions and concerns. I encourage you to obtain and show the articles I have referenced herein to your physicians. Please contact me if you, your physicians or therapists have further questions.

Yours truly,

Professor Richard L. Bruno

Department of Physical Medicine and Rehabilitation New Jersey Medical School

University of Medicine and Dentistry of New Jersey and

Director Post-Polio Rehabilitation and Research Service Kessler Institute for Rehabilitation

and

Chairperson, International Post-Polio Task Force.

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

LEICESTERSHIRE POLIO NETWORK NEWSLETTER MAY 1997 has arrived.

For the benefit of those who do not get a copy and are not able to read it on the Internet we have included a copy of an interesting article very relevant to some of our members difficulties in getting appropriate medical help. We are indebted to their Editor Helena Edwards for compiling this article. We have added R.L. Bruno PhD’s comment on the same article.

THE MAYO, THE LANCET, AND THE REVOLTING POLIOS.

The Mayo clinic in America has done a study in which 50 polio survivors, selected at random, were tested over a period of 5 years. The reports authors, led by Dr. Windebank, tried to measure the polios` muscle strength over that period of time, to see if they could measure new weakness. They could not. The Mayo researchers said they felt that progressive neurological deterioration was therefore rarer than previously thought.

The Lancet, is possibly Britains most prestigious magazine for doctors. It published a review of the Mayo`s findings in February 1996 under the unfortunate headline “Study throws doubt on postpolio syndrome”.

Within weeks we heard from people whose doctors were assuring them that PPS did not exist, and in some cases the doctors mentioned that their information came from an article they had read recently. Three guesses which one…. One person was confidently told by a neurologist that an electrical muscle test (on one atrophied muscle, in one limb) showed no abnormalities therefore the patient did not have PPS, and anyway it had now been proved PPS did not exist!

Now regular readers of these columns will appreciate why I, along with so many other polios, have come to view some doctors with less than total admiration. Many British neurology clinics offer a grossly sub-standard service when assessing new functional decline in polios. Their patients report to us the list of ingredients that are common to the cocktail that is PPS, but the Neurologists come up with wildly variable diagnoses; everything from Motor Neurone Disease to imagination, with detours through obscure conditions with impossible names. Witch doctors casting the runes or examining chicken entrails would probably be as useful.

If there isn`t any sort of chemical or electrical test for a condition then to some “scientific” minds it can`t possibly exist. This thinking took us from B.S.E. in cattle (scientists were sure it couldn`t possibly pass to humans) to human C.J.D; brought us Gulf War Syndrome (“there is no evidence…”) and is likely to be a factor in the very real M.E. problems. Fortunately there are also doctors who are not guilty of such lazy thinking, and who take the trouble to thoroughly research a subject before expressing opinions.

If your doctor is one of those relying on The Lancet to do their thinking for them (and in these pressured times G.P`s can be forgiven for doing so) you do not have to be an endlessly patient patient. Join the patient revolution. Become a revolting polio. Show your doctor the following inconvenient well qualified medical opinions.

COMMENTS : by Frederick M Maynard MD; Professor of Medicine, Case Western Reserve University; Medical Director, Metrohealth Center for Rehabilitation, USA. (From New Zealand PNN)

I have finally had a chance to see the Lancet summary of the Mayo Clinic by Windebank. I agree very much with the results of this study, that is, that true progressive nerve loss and muscle weakness (post-polio progressive muscular atrophy) is indeed a rare condition. The majority of problems in post-polio patients can be attributed to a variety of other new medical conditions, orthopedic strained conditions, arthritis, chronic overuse syndromes and so forth. The good news of this study is that progressive neuromuscular failure is very uncommon. The other good news is that most of the other conditions can be treated even if not completely.

Do not be too discouraged or distraught over the Lancet article, although it will reinforce many of the British medical establishment’s opinion that there is no such thing as Post-Polio Syndrome. As I have said many times, the crux of this issue is the definition of Post-Polio Syndrome.

A large pharmaceutical company, INS, that manufacturers Mestinon, has recently funded a PostPolio Task Force which includes seven experts from North America on Post-Polio Syndrome. Joan Headley and I were asked to sit with this group. We are planning to develop a consensus statement on definitions, appropriate diagnosis and management for Post-Polio Syndrome. We are also attempting to work with the American Academies of Neurology and Physical Medicine and Rehabilitation to establish practice guidelines on Post-Polio Syndrome. Hopefully you will be hearing more about this in the future.”

COMMENTS : by Dr. John Petrie, MB FRACP, Consultant in Rheumatology and Rehabilitation, Queen Elizabeth Hospital, New Zealand. (From New Zealand PNN)

“Whilst the [Mayo] article is important, it does represent a purely medical model of neuromuscular failure with the expectation that particular forms of abnormality should be observable. The fact that they were not observable does not deny the existence of post-polio syndrome, merely that the

authors were mistaken in their initial premise. It represents a point of view, the important issue as I have always believed is that people with post-polio syndrome do seem to be particularly prone to worsening of their disability and do require specific rehabilitation interventions. I think that the sub-editor at the Lancet who calls post-polio syndrome into question is guilty perhaps of a little artistic license.”

COMMENT ON LANCET REPORT “STUDY CASTS DOUBT ON POSTPOLIO SYNDROME” by Associate Professor Mary T. Westbrook, Faculty of Health Sciences, University of Sydney.

“The Lancet report written by McCarthy refers to a study by Windebank et al, “Lack of progression of neurological deficit in survivors of paralytic polio: A 5 year prospective study” which appeared in the journal, Neurology in 1996(1).

The main points McCarthy makes are that Windebank et al’s findings show that post polio syndrome probably does not exist, that post polio syndrome is not progressive and although there is a “rare condition” called post polio muscular atrophy the symptoms that Windebank et al’s subjects had can be explained by other diagnoses.

Before examining Windebank et al’s actual paper I will address the first two claims that McCarthy makes. There is now a vast scientific literature which supports the existence of post polio syndrome, e.g. the recent volume of papers from the conference “The post-polio syndrome: Advances in the pathogenesis and treatment” (2) that was held by the New York Academy of Science.

The progression of post-polio syndrome is a somewhat more contentious issue. In a paper I presented at the 12th World Congress of Physical Medicine and Rehabilitation in 1995 I reviewed longitudinal studies of people with post polio syndrome and concluded that studies which encompassed longer time spans have usually found slow progression of symptoms (3). Studies which have not found changes have typically retested after short periods, e.g. a year and/or have used small samples. When I retested 176 people with post polio syndrome (as identified using Ramlow et al’s criteria (4)) I found that the average person had declined in that their symptoms were more severe and they experienced greater difficulty in carrying out the activities of daily life than they had five years previously (3).

My findings were based on self reports. Those not convinced by what survivors say is happening to them should read several recent papers by Grimby et al. In 1994 they reported a 4-5 year follow-up of survivors who claimed to have experienced, or not experienced, increased weakness in their knees over the period. (5)

Grimby et al found that muscle strength had decreased significantly more in the group who said that their knees were weaker. The researchers also compared this muscle strength loss with the normal loss of strength that would be expected over this time due to aging. An able-bodied person of the subjects’ age would experience a 2-5% decrease in strength whereas the unstable polio group

experience 16-22% in the muscles tested. Last year Grimby et al reported a four year follow-up of survivors (6). They found a significant reduction in muscle area in subjects who reported that their legs had become weaker whereas this loss did not occur in stable legs. At the recent Post-Polio Conference in Sydney, Gandevia also reported a significant, but low, decrease in muscle strength when he retested post polio subjects. I said to him in the discussion following his presentation that as many polio survivors live at the absolute threshold of their physical ability, a slight decrease in muscle strength can have a very marked effect on the activities that can be carried out. Gandevia replied, “That is very true”. Examination of Windebank et al’s paper (1) shows that it is one of a series that have been based on polio survivors in Olmstead County, Minnesota where full medical records of cases of paralytic polio have survived. In 1985 Codd et al (7) sent a questionnaire to survivors in part of the county and asked people questions as to whether they had experienced any decline in function since

achieving their maximum recovery from polio. The 22% who indicated they had declined were phoned to obtain detailed information. The major symptoms reported were new pain, weakness and fatigue. This figure of 22% has frequently been cited in the post polio literature as evidence of the prevalence of post polio syndrome.

In 1987 Windebank et al (8) reported that Codd et al’s survey had been expanded to include all cases in Olmstead county and that overall 22% reported new difficulties. From these 286 survivors Windebank et al selected a convenience sample of 50 cases for detailed examination and the eventual follow-up study referred to by the Lancet. At follow-up the sample had fallen to 46 cases. If we assume that 22% is an accurate estimate of the proportional of Olmstead survivors experiencing post polio symptoms (remember that none had been interviewed in person or clinically evaluated) we would expect Windebank et al (8) to have approximately 11 cases in their sample of 50, a very small number with which to study progression. In the follow-up survey referred to by the Lancet, Windebank reported that 30 patients (65% of 46 cases) had symptoms which “included combinations of pain, weakness and fatigue” which could be explained by diagnoses other than post polio syndrome. However 10 (22% of the sample) had symptoms for which there was “no alternative diagnoses”. The authors then went on to suggest fibromyalgia as a possible diagnosis after rejecting the possibility that the 10 cases have chronic fatigue syndrome because they are not depressed! In a recent paper Trojan and Cashman (9) described 25% of the patients they had diagnosed as having post polio syndrome and as also having fibromyalgia.

My impression is that Windebank et al’s decision to question the existence of post polio syndrome resulted from a) their failure to demonstrate deterioration over time and b) their failure to define post polio syndrome as part but not all that is involved in the late effects of polio. Regarding (a) I believe a contributing factor to their failure to show change may have been the lack of sensitivity of some of the instrumentation. For example, Windebank et al derived their “Neurological Disability Score” from the results of manual muscle testing, a method that is notorious for overestimating polio muscle strength (10). Several of their measures were based on speed of performance rather than endurance. Regarding (b) I found the lack of definitions in Windebank et al’s articles a problem. The late effect of polio are usually divided into two main groups. The first group is symptoms caused by the neurological changes unique to polio (the loss or dropout of the extra nerve fibres that reinnervated the muscles weakened at the onset of polio). These are usually described as post polio syndrome. Other late effects are caused by factors such as overuse of weak body parts, deformities such as scoliosis which may lead to pain, degenerative arthritis etc. Polio survivors may experience both types of symptoms as did many of Trojan and Cashman’s patients.

In conclusion, some researchers such as Windebank et al (1) have not demonstrated that PPS is progressive. Others such as Grimby et al have provided convincing evidence that it is. Most researchers and clinicians comment on the enormous differences between people’s rate of progression. Others such as Bruno and Yarnell have found that changes in lifestyle can slow or halt deterioration. Incidentally Ramlow et al’s population based study of polio survivors from Allegheny county, Pennslyvania found that the prevalence of PPS was 28.5%.

REFERENCES:

1. Windebank, A.J. et al (1996) Lack of progression of neurological deficit: A 5 year

prospective population-based study. Neurology, 46, 80-84.

2. Dalakas, M.C. et al (1995) The post-polio syndrome: Advances in the pathogenesis and

treatment. Annals of the New York Academy of Sciences, 753, New York: The New York

Academy of Sciences.

3. Westbrook, M.T. (1995) Changes in post-polio survivors over five years: Symptoms and

reactions to treatments. Proceedings of the 12th World Congress of the International

Federation of Physical Medicine and Rehabilitation, Sydney: IFPMR.

4. Ramlow, J. et al (1992) Epidemiology of post-polio syndrome. American Journal of

Epidemiology, 136, 769-786.

5. Grimby,G.et al. (1994) Changes in muscle morphology, strength and enzymes in a 4-5 year follow-up of subjects with poliomyelitis sequelae. Scandinavian Journal of Rehabilitation, 26, 121-130.

6. Grimby, G. et al (1996) Reduction in thigh muscle cross-sectional area and strength in a 4 year follow-up in late polio. Archives of Physical Medicine and Rehabilitation, 77, 1044- 1048.

7. Codd, M. et al (1985) Poliomyelitis in Rochester, Minnesota, 1935-1955: Epidemiology and long term sequelae: A Preliminary report. In Halstead, L.S. & Wiechers, D.O. (Eds) Late Effects of Polio. Miami: Symposia Foundation.

8. Windebank, A.J. et al (1991) Late effects of paralytic poliomyelitis in Olmstead County,

Minnesota. Neurology, 41, 501-507.

9. Trojan, D.A. & Cashman, N.R. (1995) Fibromyalgia is common in a poliomyelitis clinic.

Archives of Neurology, 52, 620-624.

10.Beasly, W.C. (1961) Quantitive muscle testing principles and applications to research and clerical services. Archives of Medicine and Rehabilitation, 42, 398-425.

Our Added Comment from Richard L Bruno, PhD, West Orange NJ to the Editor of Neurology.

[The Web edition of this newsletter includes the published reply from Anthony J. Windebank to Richard L. Bruno’s letter. LincsPPN Web Administration.]

November 1996 Neurology 47 1359 Post-polio syndrome

To the Editor: The article by Windebank et al was both reassuring and disturbing (1) Their findings support the 1984 Post-Polio Task Force rejection of the terms Post Polio Syndrome and PostPoliomyelitis Progressive Muscular Atrophy (PPMA) and acceptance of Post-Polio Sequelae (PPS) as the generic descriptor of late-onset symptoms reported by America’s 1.63 million polio survivors. (2) PPS would certainly include the ‘mechanical’ problems found to cause some of the subjects’ symptoms.

However, the authors state that late-onset muscle weakness may result from ‘age-related attrition of motor neurons.’ The literature more often relates new muscle weakness to the metabolic failure of poliovirus-damaged neurons (3). An inability to document ‘progressive neuromuscular failure ‘ by measuring the number of motor units would be expected, because it is the size of motor units, that has been correlated with new muscle weakness. (3)

Further, surveys of more than 1,000 polio survivors have found an association between PPS, physical overexertion and emotional stress, not aging. (4). The lack of progression of symptoms in ‘unstressed’ subjects also should have been expected.

The suggestion that chronic fatigue syndrome (CFS) and fibromyalgia – disorders for which there is no known etiology, effective treatment, or even agreement as to their existence – as causes of PPS in the 20% of subjects with ‘no alternative explanation’ for new symptoms is far from parsimonious and allows the inference that PPS does not exist. Such an inference is evidenced by the Lancet summary of the authors’ paper headlined ‘Post Polio Syndrome Called into Question’. Post-polio fatigue has actually been suggested as a model for the pathophysiology of CFS, because poliovirus lesions in the reticuiar activating system are well documented, and recent studies have shown lesions on MRI of the brain, neuroendocrine and neuropsychological abnormalities in polio survivors with fatigue that are identical to those in CFS. (5)

Polio Survivors must be assured that their symptoms are ‘real’, do have a physiological basis, and that a decade of clinical research has identified ‘rational therapuetic approaches’ based on decreasing physical and emotional stress, that do indeed ‘produce substantial benefits’ to those with PPS.

Richard L. Bruno, PhD West Orange, NJ

Reply from the Author: The comments of Dr. R.L. Bruno are important. Our study identified a population-based cohort of individuals who had paralytic polio. As Dr. Bruno mentioned, these were individuals who had paralytic polio but were not ‘stressed’ other than by the average stresses of life and aging. We found that it was very reassuring that these individuals as a group did not have any evidence of progressive neuromuscular failure. We thought that it was also important that those individuals who had symptoms compatible with ‘post-polio syndrome’ also showed no evidence of progressive neuromuscular failure. We would agree that aging or interval since onset of polio are not risk factors for developing subsequent difficulties. This was reported in our first study. (1) We agree entirely with the conclusion that it is important to evaluate patients on an individual basis to identify specific causes for their difficulty. Most patients in the studies, had new symptoms, but most of these could be accounted for by factors not directly related to post-polio neuromuscular failure. Quantitation of fatigue is challenging because fatigue was not a major symptom in this population-based group of polio survivors. As neurologists who treat many patients who come for evaluation of post-polio symptoms, we would agree that most patients have symptoms that are real. One of the major points that we made in our first manuscript (6) was that the psychological profile of these individuals was completely normal. Overall, therefore, we would agree with Dr. Bruno’s comments: there is no doubt that polio survivors are subject to many different types of problems. However, as a population they do not appear to be at risk for developing progressive neuromuscular failure in significant numbers. We were impressed and very reassured that in this population-based study, polio survivors as a group did not have any evidence of progressive neuromuscular failure.

Anthony J. Windebank, MD Cleveland, OH

References

1. Windebank AJ, Litchy WJ, Daube JR, Iverson RA. Lack of progression of neurologic deficit

in survivors of paralytic polio: a 5 year prospective population-based study. Neurology 1996;

46: 80-84

2. Frick NM, Bruno RL. Post-polio sequelae: physiological and psychological overview.

Rehab Lit 1986; 47:106-111.

3. Rodriquez AA, Agre JC, Harmon RL, et al. Electromyographic and neuromuscular variables

in postpolio subjects. Arch Phys Med Rehabil 1995; 76: 989 – 993.

4. Bruno RL, Frick NM. Stress and ‘type A’ behavior as precipitants of post-polio sequelae. In:

Halstead LS, Wiechers DO., eds. Research and clinical aspects of the late effects of

Poliomyelitis. White Plains. March of Dimes Birth Defects Foundation. 1987.

5. Bruno RL, Sapolsky R, Zimmerman JR, Frick NM. Pathophysiology of a central cause of

post-polio fatigue. Ann NY Acad Sci 753; 257 – 275.

6. Windebank AJ, Litchy WJ, Daube JR, Kurland LT, Codd M, Iverson R. Late effects of

paralytic poliomyelitis in Olmsted County, Minnesota. Neurology 1991;41: 501-507. Lincolnshire Post-Polio Library – Copy of above article with links to referenced full text and abstracts where available.

How To Bathe Without Getting Wet or Happy Slathering

by Ruthie

This tub gal has been unable to get in one for far too many months. I hate showers anyway, but have evolved a solution of sorts. It unfortunately always leaves me feeling less than clean because I depended on the long soak for removing every bit of grime and who knows what else. Now I sit on a bath stool and let the water rise. [Forget the yeaming to drop down I keep telling myself, at least my feet will be righteous.]

Before sitting I’ve slathered the unmentionable area with its own nylon puff. I’ve also put the Shower Gel bathtub bubbles under the now running water. The scent of my choice is the blue one [I forget what it’s called]; the green one is a fair substitute. Just like the good old days I’m reminiscing.

The other nylon puff is for the rest of me except my back for which I use a looooong loofa as follows: after the soap slathering I drape it over my back and catch it with my other hand and with a seesaw motion scrub. For thoroughness drop and catch hands are reversed. After this procedure I rinse with a hand-held shower and pretend it’s as it used to be — after a long, luxurious bath. Now to the good part, my pièce de résistance.

The best slathering after-bath, bar none, lotion is Cepracil. Recommended by a dermatologist to a friend, it is better even than Nivea. All over every place it goes and until today except my back which by now must resemble a withered peach. I’m only guessing. I haven’t been able to see my back for years but I did manage to apply lotion till PPS set in. Last night, a gift from God… I knew today I would finally get it properly done and thanks be to that same glorious Power, I did.

Here’s how. Take one long handled bath brush [bought for back and which never satisfied now serves an unintended purpose] and affix over the brush end a plastic sandwich bag. The ones I have are the cheapest available which also pleases me. Here a little ingenuity will be needed on the part of each user, what worked for me since the brush head was small enough was to simply tie the front and back sides of the bag together. I tried cutting a hole in the top of the flap side but in use it slipped right off. I thought of scotch tape, but before I got some I managed to tie it on. Now here’s the important part. Hunching over put gobs of lotion on your shoulders [yes, yes the back side] and then fast, before the lotion drips on down and out start that old plastic covered brush a rollin’ back and forth. Voila! A slathered back. And I feel human again. Not to mentioned well greased and oiled and maybe even clean, but still not the same as… well, you know, grump grump grump.

We have started to compile a list of ‘lnternet Members’ who are using our website for information.

IMPORTANT! We do not automatically record any details of individuals accessing our web site. Nor is the list of email addresses of those who subscribe to the Update Notification Service used for any other purpose then to send out notices of web site changes. The list referred to hereunder is a totally seperate list which you will only be added to if you email your details to our Hon. Sec. as suggested.

This will help us when statistics are asked for as we campaign for better medical assessment and treatment for Polio Survivors in the UK. So if anyone reading this newsletter via the internet anywhere in the World (including those who live in the UK who do not wish to become paid up members) would like their name, email address and town, county/state, and country added then please email us at info@lincolnshirepostpolio.org.uk. Please note that we now have an email updating service (see our What’s New section) of changes to our site. Donations towards our work will always be gratefully received, and we have a USA ‘member’ who will accept $ cheques using

them to pay $-only cheque items we want from USA and Canada. Saves exchange fees. Membership details back page.

What you should know about your Medications. A guide for Polio Survivors.

J.M.Walker Ph.D., PT, AM Whelan, Phar. D, 1996.

Written for Post-Polio Support (Inc) 11 Wyn Street, Christchurch 2, New Zealand.

This is for your information – many medical professionals do not know PPS exists. You need to tell them you are a Polio Survivor and show them this.

Please note drug names are for New Zealand they may not be approved for use in the UK.

We hope to provide a UK version in the not to distant future.

Check with your Doctor, Dentist and Pharmacist before changing any of your drugs. Lincolnshire Post-Polio Network

Why You Should be informed:

A survey in 1994 revealed that 57% of respondents, polio survivors, were over 60 years of age and 27% were over 70 years. Medications (drugs), may be by prescription, or Over-The-Counter (OTC). As a polio survivor you should become an informed user of drugs because:

• The drug effect may enhance post-polio symptoms while influencing the primary condition.

Fatigue, muscle weakness, muscle irritability (cramps), ability to cough and clear secretions,

anxiety feelings, may be increased so that your performance decreases.

• With increasing age the potential for interaction between drugs increases and this effect is

often more severe.

• With increasing age individuals are more likely to be taking or be prescribed medications for

a variety of conditions, such as hypertension, diabetes, arthritis, insomnia, indigestion,

constipation….., the list can go on and on.

Who is at greater risk?

• individuals with respiratory muscle weakness or paralysis

• individuals with weakness of the muscles of swallowing

• individuals diagnosed with Post-Polo Seqeulae (Post-Polio Syndrome)

• older individuals (over 65 years)

You may have experienced a ‘full recovery’, Grade 5, Manual Muscle Test of involved muscles and were unaware of any involvement of your respiratory muscles, however, research has shown that these so-called ‘normal’ muscles are not necessarily normal and may be supplied by only 60% of the usual number of spinal nerve cells.

What you should do:

1. Change your lifestyle before resorting to use of an OTC drug or requesting a prescription.

2. Always inform your doctor(s) about which drugs you are currently taking regularly,

prescription and OTC drugs.

3. Ask your doctor about potential side effects, particularly those that may increase or cause

• fatigue

• respiratory weakness

• muscle weakness

• dizziness and/or drowsiness which may impede your balance and cause falls

• increase depression thus changing your perception of pain, making it seem worse

• insomnia, sleeplessness, will increase fatigue

• vaso-constriction, may increase cold intolerance.

Remember

• Taking fewer medication is better.

• It is no solution to use drugs and continue to abuse your joints, overuse your muscles.

• It is your responsibility to be informed about your medications so that you can monitor the

side effects.

• When certain drugs are taken for a long time you can develop a tolerance so that larger and

larger doses are needed.

• Physical dependency, addiction can develop from taking certain drugs, especially narcotic

analgesics.

Drugs & Their Effects. Alcohol:- is a drug. It may

• inhibit swallowing

• decrease balance & cause falls

• decrease muscle strength

Individuals with any respiratory weakness should avoid alcohol, especially before bedtime.

Laxatives:- before medications try

Firstly change your diet and drink more fluids. Get more exercise (If advised by your PPS doctor. LincsPPN)

• bulk forming stool agents, always with fluids (e.g. bran, Metamucil, Prodiem)

• stool softeners, avoid long term use (e.g. Colace, Surfak, Correctol)

• stimulant laxatives, occasional use only (e.g. Ducolax, Castor Oil, Ex-lax)

• Osmotic laxatives, occasional use only (e.g. Milk of Magnesia, Fleet enemas)

Cough Medicines & Expectorants.

May contain alcohol or a narcotic (e.g. codeine)

These suppress coughing or loosen secretions. They also cause drowsiness, decreased co-ordination, may give a feeling of chilliness.

Antihistamines, Allergy, Motion Sickness Drugs.

E.g. Seldane, Benadryl, Gravol, Chlor-Tripolon. These cause drowsiness and can increase fatigue.

Analgesics.

These are the most abused class of drugs and long term use can cause addiction. There are two

classes:

1. Non narcotic Analgesics.

Although some may be produced over-the-counter they are real drugs, with potential side effects, interaction effects or dependency effects. Examples are: Acetaminophen e.g. Atasol, Tylenol, Excedrin. Control pain only, not inflammation.

Non steroid anti-inflammatory drugs (NSAIDs) such as: Aspirin, Advil, Orudis, Clinoril, Motrin, Indocin, Feldene. NSAIDs can control inflammation and pain but may cause dizziness, muscle weakness, drowsiness.

2. Narcotic Analgesics.

These may be used in dental surgery, other surgeries, or as sedatives, pain relieving drugs. Examples: Codeine, hydrocodone (Hycodan), morphine, opxycodone (Percocet), meperedine (Demerol), propoxyphene (Darvon).

• Produce central nervous system depression.

• Can produce physical dependency

• Increase respiratory depression

• May require increasingly larger doses to gain the same effect.

• May cause postural hypotension (fainting).

Things to consider:

• Can a pudendal, spinal or epidural anaesthetic be used instead of a general anaesthetic?

• Avoid unnecessary elective surgery.

• Appropriate use of analgesics helps to control pain.

• Avoid use of analgesics helps to control pain

• Avoid taking narcotics, try aspirin, NSAIDs.

• Protect your joints! Use a cane or other ambulatory aids. Wear your orthosis.

• Try hot or cold packs, taking a shower, a bath, going to a pool to relieve muscle and joint

pains.

• Change your lifestyle, practice a work-rest routine.

Stimulents

Avoid amphetamines

Some anticholinesterase drugs, e.g. pyridostigmine (Mestinon), may influence fatigue level.

Avoid over exertion, use a work-rest lifestyle.

Antidepressants, Anti-anxiety drugs.

One third to one half normal dosage may be adequate. Many of these drugs (benzodiazepines e.g. Valium, Librium, Ativan) are also muscle relaxants, sedatives and may increase fatigue, decrease strength. Barbiturates may be used for sedative, hypnotic or anticonvulsant activities.

• Avoid drinks and foods that may enhance effect, e.g. Alcohol, coffee, especially at night and

if you have respiratory muscle weakness.

• Seek counselling for feelings of depression.

• Join a polio survivors support group, become informed, involved.

• Seek out social contacts, go on outings, volunteer, play darts, play anything, get a hobby!

Find a distraction.

In Conclusion.

This is only a brief review. Drugs taken for cardiopulmonary and other problems may have

important interactions with polio related symptoms.

Only you can identify yourself as a polio survivor to your doctor (and dentist – LincsPPN), ensure your doctor knows what drugs you are taking, and become familiar with potential side effects.

Always remember, it is no solution to take medications and continue to abuse your joints and muscles; change your lifestyle and protect your joints and muscles FIRST.

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

About my brief life in Lincolnshire

by Michael Watson, Burlington, Vermont, USA

Hilary invited me to send along a letter about my brief life in Lincolnshire. I lived in East Kirkby during 1954 and 1955, from spring to spring, a full round of the sun and seasons. Shortly after returning to the U.S. in the summer of 1955, I contracted polio. For now, I’ll write about my experience of Lincolnshire and save polio stories for some other time.

Perhaps it was in Lincolnshire that I found my love of stories, places, and food. To this day I hold the taste of a savory desert pudding, steamy with the fragrance of plums, placed before me at school on the last day of class before Christmas vacation. I have searched in many cookbooks for that delight, alas to no avail. The two or three room school which contained the pudding sat on the green in the village, less than a mile from the estate on which I lived with my baby sister, mother, and father in a manor house which had been converted to apartments for military families. There were many grades in that tiny school, and I was exposed to learning by mere proximity, it was as though I could drink as fast and deeply as I wished, just by listening and thinking. I was in heaven.

Well, some of the time. I was the only school aged child in the military housing complex, and thus, the only American in the school. For months, I was challenged and scrubbled, always outnumbered. I don’t know what happened to bring those frequent beatings to an end, perhaps I changed my accent, or maybe the novelty of a Yank just wore off. In the end, I sorrowed to leave my friends, especially Liz, who lived with her mother and grandmother in a thatched roofed cottage on the estate, and a boy about my age whose name I no longer remember, who lived with his family on a farm in which the buildings were laced together by thatched roofs and the pigs lived in one room adjacent to family living quarters.

Liz went on, not many years after, to become a nurse and move away. I knew her father had not returned from the war, but she seldom spoke of him and I don’t know whether she much remembered him. It would be almost forty years later, during a conversation with a friend from the BBC who had lost her father in the RAF, that I would grasp the losses my friends and opponents had endured.

I was seven years of age, and Liz two or three years older. Often, after walking home from school I stopped at her house. We walked to and from school when weather permitted and that winter was snowy and we sat for what felt like weeks before the great radio adjacent her mother’s pantry. We always arrived just at tea time, and a small table would be spread before us with tea, crackers, and tarts both savory and sweet. In my heart rests that table, and warms me to this day – a warmth that neither autumn nor polio can extinguish. The pastries were indescribably complexity in flavor and aroma. I have returned to England only once, and I spent my days hiking the countryside and sampling pastries from village shops, none of which came close to those which sprung from Liz’s mother’s and grandmother’s hands.

Tea warmed the evenings of those short days, and Dan Dare roved the universe between classical

music and the BBC News. When I returned to The States Dan was not to be found, but I was now convinced radio was the hearth and found sustenance with the Lone Ranger. In hospital one afternoon I listened to the Lone Ranger, a pause separating a spinal tap and the iron lung yet to come. Later, I searched the bands of my short wave radio for hours, looking for Dan; although I found the BBC, alas no Dan.

The estate was mostly wooded, with ponds and ducks, and great ferns which towered over us children. When the snow fell heavily the ferns drooped, creating houses with innumerable rooms, mansions of play. Amongst the ferns ran rabbits, or rather crawled, until the woods seemed filled with dead and dying rabbits, easy prey for small boys with air pistols and no empathy. There were the inevitable patches of briar, succulent with berries in the September sun, and nettles capable of bringing tears to adult eyes. No wonder I became a naturalist.

When I returned to walk the roads and paths around East Kirkby in 1986, a break from writing a dissertation, I discovered the fields larger and the small farms and much wildlife gone. It is much the same everywhere I go. Even here in Vermont, where large mammals such as deer and moose have been increasing, we are rapidly losing our songbirds to habitat destruction both here and in their southern wintering grounds. People, too, feel displaced from their farms and villages as global economics rewrites society and landscape.

Closer to the main buildings were lawns, peopled with statues, which relieved themselves into newted pools, fields of spring flowers, especially crocus and daffodils, and more formal gardens which interested me not at all. Inside was a spiral staircase which touched each floor, and down which I fell one day, head first, until I came to rest at the very bottom none the worse for wear. There was also a ballroom with immense frreplaces containing tree trunk sized Yule Logs at Christmas.

The ballroom was furnished with Christmas decorations purchased at the village store, which like the school, church, and post office, occupied a place on the green. I don’t remember visiting it often, but one late afternoon at Christmas we stopped in for candy. The shop was so densely packed with decorations, sweets, and goods that we could barely make our ways through what had once been aisles. The glitter of lights and aroma of food filled the air, and in a corner stood boxes of fireworks. Later, some of those fireworks magically made their way to our compound where they filled the snowy New Year’s Eve sky with color, as snakes crawled and fountains threw their radiance across the courtyard.

The manor house itself was an odd replica of an abbey that reflected its owner’s preoccupation with status and history. Near the village school lived an ancient oak which had seen centuries of East Kirkby’s history. I encountered it first while on a school nature outing. The oak lacked all pretension and simply stood by a stream in the early spring sunshine. Earlier in the day we had listened to a lecture on Mozart via the BBC. Now I stood beneath a tree which had been mature when Mozart roamed the courts of Europe. That tree, together with another which housed a multitude of rooks, became for me symbols of place and our human experience of continuity. As a seven year old, the manor house in its dream of antiquity, the trees with their ancient rooks, and the medieval farms worked to deepen my awareness of the dense weavings of place, history and ecology – an awareness which continues to hold my attention with awe. Those early awakenings were reinforced when I spent almost a year recovering from polio inside; for month after month I watched people and nature through windows, and wondered at what I saw. I believe my love of art, music, theater, anthropology, and ecology (to say nothing of gardening) is deeply rooted in my experiences in Lincolnshire. (I recently threw our household into uproar when I said I might want to return to university as a STUDENT!)

One last thought. Thanks to an RAF Commander I discovered the Wolds when I visited in the mideighties. Someday I’d Like to explore them, and talk to those who live there. Its odd, I vaguely remembered The Wash, and marshes and their animals and folk have always fascinated me. But the Wolds were new and magical and ancient. I must have seen them when a school boy but they have

no place in the maps of memory.

The events I have shared with you took place over forty years ago; yet, the memories remain strong. I recovered from polio save for a limp and weakness. Over the years the pain has returned and I can no longer take the long hikes I love. I continue to work as a mental health counselor, although I have mostly given up teaching college. Some days I become unimaginably tired. These memories bring relief, and the lifelong interest which were kindled within me during my stay in Lincolnshire continue to illumine my world with wonder and meaning. Thanks for allowing me to share them with you.

Please feel free to share your thoughts and memories with me. Warmly, Michael Watson

dunn_watson@together.org

130 Church Street, Ste 1

Burlington, Vermont

USA 05401

PARENTS BLOOD

a biographical novel by Ginger Sage M.Ed.

arrived a couple of weeks ago. Very interesting account of the flood in 1938 in Malott, Okanogan County, Washington State, USA, when Virginia (Ginger) was nearly 8, four years after having had Polio. Well written, extremely well referenced and we await copies of some of the articles she used.

A taster ….(Page 45) The roar and banging of the buildings disintegrating up the street made it

impossible to hear anything. After years of soaking in the old mill pond, logs like gigantic ramrods,

weighing tons, screamed and crashed against each other as they tumbled through town. Somehow

the logs were glancing off of the outside store walls. Miraculously, the oblique north/south angle of

the General Store on the B & O road seemed to be shunting these logs aside……..(Page 60)

Winifred’s experiences had confirmed the advice the doctor had given Ellen and Ed after the Polio illness. ‘The child is recovering now, but you can expect that she will tire easily for quite a few years. She’s a smart little one, and she will probably have a productive adulthood. Still, she will need to find a knowledgeable doctor who is willing to follow her into her old age – a doctor who is willing to help her wherever he can’. ‘It affects the nerves, you know,’ Winifred explained. ‘Many people ask me if my hand is my only deformity. I say, ‘yes’ but actually, polio affects the nervous system in a sporadic pattern, and then the damaged nerves cause the muscles they feed, to not develop and appear to shrivel like my hand. They tell me that the damaged motor nerves are what causes my fatigue. I’ve had to learn to live without overusing the nerves that weren’t damaged or destroyed. If I take it easy I seem to get along fine. You don’t need to feel sorry for me. …….

If you would like a copy then send a $30 cheque to Ginger Sage at PO Box 457, Entiat, Washington, USA. It costs about £8 to get a $ cheque which makes this expensive, if anyone has any contacts who could help us pay for items – often only small amounts – in $ cheques then please get in touch. Our only other suggestion is to send one cheque to one of our contacts in USA and get them to forward our requests for items.

ACTUAL SIGNS SEEN ACROSS THE USA

from Marilynn

At a Sante Fe gas station: ‘We sell gasoline to anyone in a glass container’

On a long established New Mexico dry cleaners: ’38 years on the same spot’ On a display of ‘l love you only’ Valentine cards: ‘Now available in multi-pack’

Persons are prohibited from picking flowers except from their own graves.

In a New York drugstore: We dispense with accuracy.

And apparently somewhere in England in an open field otherwise untouched by human presence, there is a sign that says,

‘Do not throw stones at this sign’

POLIO PHONE PALS

We have decided to start Polio Phone Pals. No-one understands the problems of a Polio Survivor better than another Polio Survivor. A few of us have the benefit of the internet and the ability to ‘talk’ to many Polio Survivors all over the world by email for coppers – once you have the computer equipment and Internet service, not coppers but decreasing in price monthly – and let off steam… and I can assure you that everyone who joins the Polio lists says the same thing. All of a sudden you are not alone and boy does the World shrink. So Lincolnshire Members and those in other counties who would like to join in……The idea is to put you in touch with two or three other members of similar age, experience, polio problems so that when you are having a tough time and need someone to talk to you will have ‘new friends’ who will understand what you mean. In turn you will be the ‘ear’ for them. If you want to join in get in touch by letter or phone. We can then discuss with you where other members are that have also joined and put you in touch with one another. We will not be printing any telephone numbers in newsletters. This will be entirely private and information only kept in the office in a small book. The list was started a few days ago and has five names on it already.

MEMBERSHIP FEES

£10.00 yearly from April 1997 to March 1998. Cheques to be sent to the address below.

Payment may be sent by two cheques one dated May 1997, second postdated July 1997. NB: Some members have already covered this fee by way of donation already received.

If you have not and wish to continue receiving the Newsletter after the July issue then please contact us by August 5th 1997.

MEDICAL and GOVERNMENT PROFESSIONALS RECEIVE THIS NEWSLETTER free of charge as part of our campaign

‘PROMOTING THE AWARENESS OF THE PROBLEMS OF POLIO SURVIVORS’ MEMBERSHIP IS OPEN TO ALL

Donations, grants and sponsorship will always be gratefully received and acknowledged if wished in our news letters and on our Web Site.

We need more British articles, letters, tips, etc., from members and anyone else reading this. If you would like to contribute then please get in touch before July 15th 1997.

Anticipated issue date of LincPin No. 6 will be Tuesday 22nd July 1997.

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

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

Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/linkpin/linkpin975.html> Last modification: 10th April 2009.

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