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POST - POLIO NETWORK (NSW) INC.

N E W S L E T T E R #45


Editor: Gillian Thomas        PO Box 888 Kensington
Email: secretary@post-polionetwork.org.au        NSW AUSTRALIA 1465
Website: www.post-polionetwork.org.au        Phone No: (02) 9663 2402
Patron: Professor Emeritus Sir Gustav Nossal AC CBE FAA FRS

President's Corner        Gillian Thomas

Welcome to regular readers and new members alike. Our next Seminar will be held on Saturday 8 July at Kogarah. Please try and be there, if you can, to hear Dr Katrak's report from the conference of post-polio experts held in the USA in May - full details appear on page 2.

In this issue of the Newsletter you will find a profile on the Network's Patron, more papers from Polio Australasia's Polio 2000 Conference held in Melbourne in January, the final call for the Polio Reunion on 27 June, Paralympic Games Archery update, Polio Particles, Support Group Report, and much more.

It is membership renewal time. With this Newsletter you will find one of two forms, depending on your financial status. If you are currently paid up to 30 June 2000 (as shown on your address label) you will find a Membership Renewal Form enclosed, for the period 1 July 2000 to 30 June 2001. Could you please confirm, complete, or amend your details as given on the form, and return it with your subscription to the Treasurer at the above address. Please note carefully the new membership subscriptions: these are $10 (not employed) and $20 (employed). There is no Goods and Services Tax (GST) required to be paid on top of these amounts.

If you are already financial beyond 30 June 2000 (as shown on your address label), you will receive a Membership Update Form which gives your current details but does not request payment of a membership subscription. Please check your details and amend as required, and then return the form to us as soon as possible.

The introduction of the GST is going to increase the costs of running the Network. Members have always been incredibly supportive of the Network, and we are asking you to continue this support. Since we receive no government funding your generous donations are what make the Network continue to survive and, indeed, thrive. Donations of $2 and over are tax deductible.

We are continuing to talk with Dr Lauro Halstead, American polio survivor and post-polio researcher, about him visiting Australia during 2001. An update will be given in the next Newsletter. In the meantime, copies of his book are still available for $25 until the end of June.

Work on the priorities the Management Committee set itself in January is progressing. In particular, the Medical Alert Card and Hospital Admission Fact Sheet are nearing completion and will be available to members later in the year. We were pleased to receive a community grant of $250 from Burwood Council towards production of the Fact Sheet.

Finally, a reminder that the Newsletter is now available on audio tape for members who are unable to read it. Please let our Membership Liaison Officer, Janet Malone, know on (02) 9787 1042 if you, or any member you know, would benefit from receiving the Newsletter on tape.

Unless otherwise stated, the articles in this Newsletter may be reprinted provided that they are reproduced in full (including any references) and the author, the source and the Post-Polio Network (NSW) Inc are acknowledged in full. Articles may not be edited or summarised without the prior written approval of the Network. The views expressed in this publication are not necessarily those of the Network, and any products, services or treatments described are not necessarily endorsed or recommended by the Network.
Post-Polio Network Seminar

Date:        Saturday, 8 July 2000

Time:        1:00 pm - 4:00 pm
        
        Bring a packed lunch to eat from 12:00 noon and
        catch up with friends before the Seminar
        Fruit juice, tea and coffee will be provided during lunch and afternoon tea

Venue:        St Paul's Anglican Church Hall
57 Princes Highway, Kogarah
  1. Please note that the Hall is on the left-hand side of the Princes Highway as you drive towards Sydney, between Gladstone and Regent Streets. If you are driving from Sydney down the Highway, you need to turn right into Regent Street, left into Gladstone Street, and finally left back onto the Princes Highway. St Paul's is then a short distance along the Highway, on your left. Parking is available on the premises. It would be appreciated if those who are more mobile would leave the closer parking for members who are only able to walk or wheel short distances.

Our guest speaker will be Dr Pesi Katrak FAFRM, who is a Consultant in Rehabilitation Medicine. Dr Katrak completed his under-graduate medical education in India. Following post-graduate work in India, he undertook further post-graduate training in Internal Medicine and Rehabilitation Medicine in the United Kingdom and the USA. Dr Katrak is the Past President (1995-97) of the Australasian Faculty of Rehabilitation Medicine. Dr Katrak's current appointment is Staff Specialist in Rehabilitation Medicine at Prince Henry Hospital in Sydney. In this capacity he has been consulted by many Network members.

At our request, Dr Katrak received an invitation to participate in an international conference on post-polio syndrome (PPS) which was held 18-21 May 2000 in Warm Springs, Georgia, USA. The conference was sponsored by the March of Dimes in collaboration with the Roosevelt Warm Springs Institute for Rehabilitation.

In a Press Release issued at the conclusion of the conference, Joan Headley, executive director of the International Polio Network and member of the conference's steering committee said "Many polio survivors report that they experience obstacles in the diagnosis and care of their fatigue, pain, weakness, and other problems involved in PPS. This symposium was an exchange of information on the best practices for diagnosis and treatment of PPS to help improve the lives of polio survivors."

The two-day symposium gathered the world's leading experts on the causes of PPS; diagnostic criteria; features of the disorder, including neurological, musculoskeletal and respiratory problems; and treatments such as physiotherapy, occupational therapy, coping skills, and nutrition.

The American Academy of Neurology, in cooperation with the American Academy of Physical Medicine and Rehabilitation, several allied health care professional organisations, and the March of Dimes, are developing the conference report, Practice Guidelines for the Management of Post-Polio Syndrome.  This report will use evidence-based information to make recommendations. It is scheduled to be published in September 2000.

You won't want to miss this Seminar. If this is the first meeting you have attended, please introduce yourself to a Committee member. We look forward to seeing everyone there.

An Esteemed Patron for the Network - Sir Gustav Nossal
The Management Committee has for some time recognised that the Network needs a higher profile in the community to raise the awareness of health practitioners and the public to the devastating effects of the late effects of polio on survivors' lives. Of equal importance, however, is the need to contact polio survivors so that they have information about polio's late effects and their management. Many are facing problems of increasing disability, and are unaware of the cause.

As an unfunded organisation run by volunteers with a polio history, we need assistance to achieve our aims. Accordingly, earlier this year we decided to invite patronage of the Network. The decision to approach a possible patron is not taken lightly, and we were keen to make our choice as relevant to the Network's members and activities as possible.

In writing to Sir Gustav Nossal, Australian of the Year 2000, we told him that the Network would benefit greatly from having as its patron an eminent scientist who has been so conspicuous in the fight against infectious diseases - we believed his patronage would be particularly appropriate in our case. We were delighted when Sir Gustav accepted our invitation. He wrote “… congratulations on the very important work [the Post-Polio Network is] doing. I am proud now to be your Patron.” We are equally as proud that Sir Gustav has agreed to become our Patron.

Sir Gustav has made a remarkable contribution to science and technology. His influence has formed and shaped the scientific affairs of Australia for three decades, and continues to do so. Sir Gustav's research accomplishments are world-renowned. His work confirmed Burnet's theory of antibody formation. This was a turning point in understanding the immune system. As a researcher, and as Director of The Walter and Eliza Hall Institute of Medical Research over thirty-one years, he has helped build the foundations of modern immunology. Under his directorship, the Institute went from strength to strength; it is still the pre-eminent medical research institute in Australia and one of the great medical research institutes of the world.

Sir Gustav has been an energetic warrior for improving global health through his long-term involvement with the World Health Organization (WHO), most recently as Chairman of the Global Programme for Vaccines and Immunization.

In April 1998 Sir Gustav was interviewed for the Australian Academy of Science's Video Histories of Australian Scientists program. In speaking of his work at WHO he said:

Well, through the great generosity of UNICEF and of Rotary International, we have the Expanded Program of Immunisation, a solid program which has got rid of poliomyelitis from the Americas and should have got rid of poliomyelitis from the world by 2000 or within a couple more years – a wonderful triumph. This same program has materially upgraded the use of the six vaccines that are common in childhood and it has also made big progress in measles.

Now comes the big 'but'. We got stuck at a coverage rate at or just below 80 per cent. Going the extra mile to put it into the 90s or even the high 90s has proven very difficult. And, of course, countries are heterogeneous. In the 28 poorest countries of the world, mostly in sub-Saharan Africa, the progress has been less than remarkable.

In answer to the interviewer's question: “I think you're looking forward to the new millennium, when you're going to be able to announce the absence of polio from the world. It'll be a classical moment.”, Sir Gustav responded:

Yes. I actually think that if we can do this task – it's now only a matter of time – it will have a galvanic effect on the world. We had the smallpox triumph, but in our lifetimes smallpox really affected only people in very poor countries, whereas polio crippled a President of the United States. Practically everybody has a friend who's got a gammy leg or arm from polio. … So people can identify with that. If [polio is] gone from the world, if you do not have to vaccinate any more, just think of the savings. Not having to vaccinate would probably pay for all of the previous research on vaccines since the dawn of history in a single year.

Professor Emeritus Sir Gustav Nossal is indeed a most appropriate Patron for the Network.
Breaking The Silence

Pam Martin

Pam Martin is a clinical psychologist and family therapist. She has worked with people with various disabilities for over 20 years, through the public service and in rehabilitation centres. Now she continues this work as part of her general private practice in Melbourne.

This paper presented at Polio Australasia's Polio 2000 Conference in Melbourne in January is a result of research for her Doctorate of Public Health at La Trobe University. Pam talked extensively with polio survivors, some of whom now experience polio's late effects. What she has to say here is not supposed to be true of any one survivor, it is more a composite picture of her findings. She sincerely hopes that no-one has been misrepresented.

This paper is presented as a sincere thank you to those people who kindly participated in my doctorate research about talking with people who have had polio. I learnt so much from these people, not only about polio and the late effects of polio, but also about life and myself.

There were many ways I could have interpreted what the research participants said. The explication that stood out for me was the influence of enforced silence on these people, and how experiencing the late effects of polio has broken that silence. I have come to understand the power of this silence from a socio-cultural perspective, where the unspoken rules of our society demand that we comply, or risk being outcast.

The Australian society has a value system that promotes what could be called the “ordinary life”: marriage, kids, job, holidays, playing sport, and so forth. If people want membership to our society then they have to be able to conform with those prerequisites. They must be able-bodied people who proceed through life without any major problems. Of course this is very difficult for many people who have had polio, because their physical capabilities do not conform with society's standards.

The research participants told me how adolescence was an important turning point for them. They discarded polio, threw away their aids, and forgot their experiences of hospitalisation and rehabilitation. This was their way of being able to become part of their peer group, and to enjoy life just like everyone else. It made them eligible for membership to our society.

However there was a price to pay for this membership, and the price was a life time of silence. They were not to mention, or even think about, their childhood experiences. They were unable to ask for help when the going got tough. “Self-dependence” was the name of the game. They had to continually strive to prove that they were worthy of inclusion. They learnt to live life by determination in the extreme.

The silence has been a necessary, and indeed essential, strategy to maintain membership of our society. By being silent the participants became just like everyone else. They lived the ordinary life and blended into their communities.

Suddenly the late effects of polio started occurring. At first the participants battled on, ignoring the warning signs from their bodies. Then the effects could no longer be hidden. It became more and more obvious that polio had been a part of their lives, and it was making itself heard again. Silence was no longer possible.

The breaking of the silence in physical ways has challenged the participants to break memory and emotional silences as well. For the first time they have begun to think about themselves and their life experiences from the perspective of someone who has had polio.

The participants talk of how they have started to acknowledge what had happened to them, and their feelings during those times. They have pondered how they felt about their parents' support and the attitudes of their schools and communities. They have begun to recognise how hard they have worked all their lives to make sure they were as worthy as everyone else. They recognised the effects of silencing polio not only on their own lives, but those of their loved ones and friends.

So in developing the late effects of polio, they have also set out on journeys of self discovery where silence does not impede their progress. They have become more aware of who they are, and what has made them that way. They have come to realise that they are most worthwhile people who have succeeded in all the areas they deem important. They have started believing they are valuable members of their families and society, with compassion and generosity towards others. For some of them this new awareness has freed them to talk about polio with families and friends, often for the first time.

I do not say that it has been an easy journey. There have been many painful places to visit and rough ground to travel. Sometimes they have needed to tap into anger at the injustice of it all in order to generate enough energy to continue. At other times they have felt a sense of inner peace as they recognise their self worth.

In recognition of the importance of breaking the silence, I would like to tell you a story. I have come to know this story because of the generosity of the research participants. They shared their lives with me with honesty and openness that humbles me. What I hope is that as you listen, you will think about yourself and your own life. Then I will have been successful in helping to break the silence.

Before I start, may I say to the research participants, that this is not meant to be the story of any one of you. You may identify with parts, however it is the story of my understandings, having listened to what you have told me.

A Story To Break The Silence

at first

I can't remember much before I got polio. I was just an ordinary kid, running around playing with my brothers and sisters and the neighbourhood kids. Then one day I wasn't feeling too well. Mum thought I might have flu or something, but I kept complaining that I felt funny so she took me to the doctor's. He seemed a bit unsure about what was happening and said that if I wasn't better in the morning then I'd better go into the hospital for some tests.

Next day I was still unwell, so we went to the hospital.

into hospital

Then it started. Suddenly things happened oh so quickly. My world turned upside down, things spun and spun out of control. Mum and dad disappeared and all these strangers took over. They took me away.

That was when the horror started.

I was put in a bed in a huge room with high ceilings. There were all these other children there, and all sorts of terrible things were happening to them. Some were in boxes that hissed and wheezed. Others were tied up in bed and couldn't move.

I started to cry. I wanted my mother. I needed my mother. I wanted to go home. But 'They' were cross and told me to be quiet. Nobody came.

I soon learnt not to complain. My mother and father were gone and I was in a world where I had to do what 'They' said.

I didn't understand this world, or why I had been taken there. They didn't tell me anything or explain why it all just happened to me.

And so my new way of living began. I learnt to be good and quiet, and to do as I was told. I learnt that I was alone. I learnt that the only person I could depend upon or trust was myself.

hospital life

I gradually settled into a life of hospital. At first I was in a special section for quarantine for a couple of weeks, and I was really sick. Then I was moved to another part of the ward with the rest of the polios. There were kids with other things wrong with them too - the TB kids and the cripples. I stayed there for such a long time.

People didn't know much about how to treat polio except by splinting and putting plasters on the affected areas. So I spent all day and night in a 'double Thomas' splint. It was supposed to stop my muscles from contracting so that I wouldn't become a spastic.

I don't know who 'Thomas' was, but he certainly thought up a cruel and frightening treatment. The splint was like a wire frame that I was tied into day and night so that I couldn't move. My arms were stretched out like on a cross and my legs were apart. I couldn't move my head. It was so embarrassing. There was a hole in the frame below my bottom to go to the toilet. I was cold all the time from the metal, but I wasn't allowed to complain.

So I spent a long time tied in this thing, staring at the ceiling and unable to move at all. All us polios were like that. They had these 'long prams' like trolleys to wheel us about on, and we were picked up and put onto them, frame and all. We were often taken outside, but people seemed to forget about us, and left us there when it was raining or too hot.

I know there were other children in the ward, but I can't remember much about them. Sometimes we used to talk to each other, but I guess it was 'out of sight, out of mind'. I do know that some kids died, and that I was supposed to be 'lucky' because I had survived.

There were kids in other wards who had different things wrong with them. Some were spastics, and some had TB. We thought we were better than all of them, and the spastics thought they were better than the TB kids, and they thought they were better than the spastics.

It was so hard on me emotionally; I think that's why I can't remember a lot of it. We weren't allowed to complain or be upset, it just wasn't allowed. If I ever showed how lonely or frightened I was, the nurses either ignored me or I got into trouble. It was so hard, so I just learnt to never show how I was feeling, I learnt to just get on with it.

Later on I had to have surgery to correct the way my arms and legs had gone. I was put into plaster to straighten things and stretch my muscles. That was agony from the time the plaster was put on till it was taken off a couple of months later. I still had to have that done much later when I came back to hospital for my check ups. I hated it.

Since I've been talking to other polios, I've found out that there was quite a disagreement about the best sort of treatment. Apparently an Australian 'Sister Kenny' went to America and developed a treatment using massage and movement of limbs rather than stabilisation. I don't know which one worked better, but her method doesn't sound so frightening or painful.

After I had been in hospital for a while I was allowed to come out of the splint for short periods. Sometimes I would get put into one of the huge baths for physio. This was such a pleasant change, but not at all like the swimming in a pool that I had expected.

As I got a bit better, they started physio on my limbs, and I started to learn to get around a bit in the leg irons. That seemed so heartless too. No-one ever helped, or picked me up when I fell over. It was all up to me; if I wanted to get better, then I had to do it I guess that's where I learnt to be so determined.

We weren't allowed to have visitors in hospital for months. Sometimes Mum and Dad came, but they weren't allowed in. No-one told me they had been or that they weren't allowed to come in, and so I just assumed I had been rejected and abandoned. Later on they were able to visit, about once a month I think it was, but they couldn't come every time.

going home

Then I went home. Boy was that weird. I had hardly seen my family for ages, and suddenly I was supposed to be a part of them again. I really didn't know how to handle it, and I don't think they did either.

On looking back, I realise that Mum and Dad did their best to help me. Mum had been told about the treatment I had to do, and she made sure that I did it. She was so strong. I don't know how she did it, it must have been terrible for her. I don't think I would have recovered so well if it wasn't for all her efforts. Dad worked pretty hard, so he didn't get much time, but he helped where he could. Fathers didn't say much in those days, so I don't know how he felt about it all.

My brother and sister helped with the exercise program too. They thought I had been spoilt while I was away because mum and dad used to go to visit me sometimes, and they were left behind. It must have been hard for them. I had a new sister too who I'd never met even though she was already 3.

After a while I settled back into family life. I found I could play with the other kids, although I couldn't do everything they did. I managed to ride my bike, but I kept falling off and climbing in the backyard was really hard. I still had to sleep in my double Thomas, but I didn't wear it during the day. Mum used to tie me into it, but sometimes I could get my brother to undo the straps for me.

I had to go backwards and forwards to the hospital for check ups and treatment. My leg irons had to be repaired and adjusted as I grew, so that meant going to town too. Most of the time that was in the school holidays. Everyone else was at home having a good time, and I'd be in the hospital, sometimes for a month or so.

Some of the people who lived near us were okay, but others were really terrible in the way they treated me and my family. It was as though we were lepers or something. I understand now that they were frightened that they would catch polio too, but at the time it was dreadful. They crossed the street to get away from us, and wouldn't have anything to do with us at all. I don't remember it making much difference to me because I was only young, but it must have been terrible for my parents.

It's funny. I never think of myself as having a childhood, certainly not a normal one. I spent so much time in hospital. Even though it was fun when I got home, I was always different. I always did as I was told, not like my sister. There were always exercises and hospital checkups. I could do almost everything my brothers and sisters did, but I had to try harder to keep up.

back to school

Going back to school was a different kettle of fish. It was so difficult. My brother and sister had to push me and the long pram up the hill every morning. I'd had lessons at the hospital, but the headmaster said that I had to repeat, so I was older than all the other kids in the class. I had to have a special table built so that I could sit at it with my leg irons on, and people had to take turns to help me outside at playtime.

I think the thing I really hated at school was that I was different from everybody else. We had a school uniform that everybody had to wear, but I needed extra clothes to keep the polio bits warm. Mum made me special socks and leggings to wear which helped, but I hated how everyone knew I was wearing them.



Some of the teachers understood how difficult it was for me, but others were really mean and went mad at me for things I couldn't help. The kids were okay. Some of them called me names or took my crutches, but others were really good. I managed to join in sometimes at play time, but I couldn't do everything.

high school

Ah, high school. This is where things started to change. I was sick of being different. I hated the built-up shoes, the leg irons and the back brace, the leg warmers and the supports. I wanted to be like everyone else. I wanted to have friends my own age. I liked the opposite sex and I wanted to join in the fun. But with all this special stuff that I had to wear, it was hopeless.

I just decided that I wouldn't use aids any more. I was going to be normal. So I threw it all out - irons, frames, braces, everything. How great it was. I could wear ordinary shoes and clothes just like everyone else.

I thought I was wonderful. I didn't tell anyone that I had had polio, so no-one knew. I was just the same as everyone else, playing sport, swimming, going out with friends. It was fantastic.

off to work

Once I started work most of the people I knew didn't take much notice of the things I couldn't do. But there was always those others, whether I knew them or not, who would stare or make some rude comment. That used to really hurt.

Polio didn't matter at all once I got to work. I chose a job that challenged my abilities, something I could get my teeth into. The travel to and from was a bit challenging - remember they didn't have cars in those days, and I wasn't a great walker. I found the day pretty tiring physically, but it was worth it. I was very good at my job, always efficient and putting in that extra little bit. I didn't understand how others weren't as dedicated.

I have always enjoyed working. I suppose that's why I continued battling on with it well after I wasn't able to manage physically. See I have never listened to my body. I've always been in pain and had to battle on. It's the only way for me, it just has to be done.

and so life goes on - going out, marriage, kids etc

I really enjoyed life when I left school. I got up to all the usual stuff - going out, dating and so forth. I used to like going out to dances and all that. They were great fun. Most people knew me, and didn't take any notice of my droopy arm. Sometimes someone I didn't know would be there and they'd stare at me, but I thought, “They're only belittling themselves”.

I met my husband in my early 20's, and we had a couple of kids. At first I was worried whether they would be normal or not, so I was relieved when they were born okay.

Since then we've gone on just like everyone else, doing all the normal things bringing up the kids, working, going on holidays. I've needed a fair bit of medical attention over the years because of the polio, and I've had quite a few operations for various things. But we manage.

Being married to me is pretty hard work. I have always been driven, and I'm inclined to drive everyone else too. I don't mean to, it's just the way I am.

So I've never had much time to myself. I've always enjoyed being very busy and involved in heaps of things: long days at work; the kids' school; voluntary work on committees; and all that.

People say that we polios are determined - some say 'pig headed' and that we always take on more than everybody else. I guess that's true, but I've always done it that way.

these darn late effects of polio

I was going okay till this late effects of polio started a few years ago. I was working, enjoying my grandchildren, going on holidays, and generally getting on with things. When I think about it, the late effects of polio had probably been happening for a while, but as usual I was too busy to really notice until it just got too much.

I began to realise that I was always tired. Not that normal tired after a long day, but an exhaustion that is impossible to describe. I felt that if I didn't lie down for a while, then I would just keel over. And this was in the middle of the day. How frustrating! Not only that, but I've started to ache all the time. My legs won't support me, and my hands won't work properly. My body seems to be losing its strength, not only where I had the polio, but other parts too. My concentration's not as good as it used to be either.

At first I didn't know what was happening to me. Sometimes I would be okay, and sometimes it would all be too much. It didn't occur to me that it was something to do with polio; I hadn't had anything to do with that for years.

Someone I knew told me about the polio clinic at Fairfield. They've been really helpful not like the doctors I saw locally. They didn't seem to know anything about it. Most of them had never seen someone with polio! I attend a support group too. That's great because people understand what I'm talking about.

So now walking is a real problem, and it's exhausting showering and so forth. I can't do as much around the house any more. I have to get someone in to help with the cleaning and changing the beds. If I want to go out somewhere, I have to organise transport and check out the venue first: how far do I have to go, are there steps, can I make it?

Fairfield has given me leg irons to wear. I haven't had to worry about that sort of thing for 30 years! My electric wheelchair is fantastic. I don't have to use it all the time, but it's a godsend when I need it.

I just have to keep pacing myself. If I overdo it I'm in real trouble.

I'm frightened about what's going to happen in the future. I really don't want to lose my independence. I'm hoping that if I look after myself now, then I'll be able to care for myself as long as possible.

I'm managing all this okay. But it's hard. Very hard.


Final Notice of 50 Year Polio Reunion –
Don't Miss this Opportunity to Catch up with old Friends

This reunion was initiated by Network member and former Sydney Lord Mayor Doug Sutherland to recognise the 50th anniversary of the hospitalisation of those admitted to the Prince Henry Hospital in 1950.

Due to the wide and varied response, an invitation has now been extended to all polio survivors, their families and carers, and to all hospital staff who cared for them, throughout Australia during the many polio outbreaks which occurred over the half century from 1915 – 1965, and to those who experienced polio overseas.

The Reunion will be held at the Regency Function Centre, Burwood RSL Club, on Tuesday 27 June 2000 from 11:00 am to 3:00 pm. The $35 cost includes tea and coffee on arrival, a three-course lunch and non-alcoholic beverages. To attend simply complete the form included with the May Member Update and return it to Doug with your money as soon as possible. The Reunion Organising Committee, supported by the Network, has put a lot of work into making this an event to remember – please be there if you can. For further information, contact Doug on (02) 9747 2055 (b.h.) or Merle on (02) 4758 6637.
Sleep Disordered Breathing

David Berlowitz

David Berlowitz is Senior Physiotherapist, Departments of Respiratory Medicine and Physiotherapy, Austin and Repatriation Medical Centre. He presented this paper at Polio Australasia's Polio 2000 Conference in January, and it is reproduced here with permission of the Conference organisers. An audio tape recording, which complements this paper, is available from the Network for $16, including postage.

Sleep disordered breathing (SDB) is characterised by repeated interruptions to breathing during sleep. These interruptions occur because during sleep the muscles of the upper airway relax and in individuals with SDB, this relaxation is sufficient to cause significant narrowing, or even complete closure, of the throat. To restore breathing, the person with SDB must momentarily wake from sleep and restore the patency of the upper airway. Only then can they resume breathing. This may happen many times a night and these repeated interruptions result in poor sleep quality, a reduced oxygen supply to the body and excessive daytime sleepiness.

Sleep disordered breathing affects approximately 5% of men and 2% of women in middle age and this prevalence further increases as people get older. Symptoms of SDB include excessive daytime sleepiness, poor concentration and memory, morning headache, depression, short temper, personality changes and a decreased libido. The usual treatment for SDB involves wearing a nasal mask connected to a CPAP (continuous positive airway pressure) machine which supplies positive pressure to the upper airway and splints the throat open from the inside. This prevents the obstruction, improves sleep quality and the hence removes the daytime sleepiness. For the majority of people this resolves the SDB.

The diagnosis of SDB is made by consulting a Respiratory (Sleep) Physician who will usually then order a sleep study. A sleep study involves spending a night in a sleep laboratory, fully monitored with surface electrodes and other measuring devices that record information regarding sleep and breathing. This information is interpreted and the severity of the SDB (if any) is quantified. Once a sleep study has been performed, treatment options can be discussed.

Those people who had polio earlier in life may develop additional neuromuscular and respiratory symptoms decades after the acute attack, as a part of the “post-polio syndrome” (PPS). It appears that people with PPS have an increased likelihood of having sleep disturbances compared to the rest of the population, however there is little scientific literature specifically examining this topic. The literature does suggest that those individuals who were more severely affected by polio during their initial infection, report more sleep disturbances later in life than those who were only mildly affected. Whether all of these subsequent sleep disturbances are due to SDB or other sleep disorders is not known.

Sleep studies should be considered for all PPS patients with excessive daytime sleepiness and/or respiratory complaints. Those with obstructive and mixed apnoea can often be treated with nasal CPAP. Those with significant muscle weakness or kyphoscoliosis, may be at risk for sleep related hypoventilation. These people can be treated with nasal mask ventilation. The sleep study may also identify other non-respiratory reasons for sleep disturbance, such as restless legs syndrome. Disturbed sleep is a common symptom of PPS, however care must be taken to exclude treatable sleep disorders (i.e. SDB, restless legs) and not assume that the sleepiness is always due to PPS.



2000 Paralympic Games – Archery Team Selection Trials

Regular readers will remember that the Network's Internet Webmaster Tony Marturano has been training hard to be selected as a member of the Australian Paralympic Committee (APC) Archery Team. We were thrilled recently to read this report from Robert de Bondt, APC Head Coach – Archery.
On 20 and 21 May, the final Paralympic Selection Trial was conducted at Northern Archers at Pennant Hills.

There were a total of 3 trials conducted, each over 2 days, spaced a few weeks apart. This would have been one of the most arduous selection trials the Australian archers have faced. With it came an experience of unrivalled pressure, which is impossible to create in normal training. In spite of this pressure, each archer on various occasions was able to shoot a personal best score. Tony Marturano saved the best for last and on the final day shot a new World Record of 318 points for 36 arrows at 70 metres.

At the end of the day the archers, at this stage unofficially nominated, are:

Arthur Fisk (shoots from a wheelchair – category W2)
Tony Marturano (shoots standing or sitting in an ordinary chair – category W3)
John Marshall (shoots from a wheelchair – category W2)

We are very hopeful to secure a further standing place and are awaiting International Paralympic Committee advice. The archer awaiting this nail-biting decision is Andre Baronie from Western Australia (Ed. Andre is also a polio survivor). He acquitted himself extremely well during the trials, but ran into an in-form Tony Marturano.

The proposed Australian Team will be one of the strongest fielded by Australia and I consider them to be strong medal prospects, both in team and individual divisions.


The Australian Paralympic Team will be announced on 27 July 2000. If you can, please try to get to the Paralympic Games to give support to the athletes. If you'd like to see Tony shoot, his archery program will be:

Sunday 22 October 2000 - Day three - Individual Elimination Events – Afternoon Session

Men Standing shoot the 1/16 and 1/8 Elimination Matches from 2:00 to 5:00 pm.
Each archer shoots 6 ends of 3 arrows (18 arrows).
The winners progress onto the next round.

Monday 23 October 2000 - Day four - Individual Elimination Events – Afternoon Session

Men Standing (2:00 pm) and Men W2 (3:20 pm) shoot the 1/4 Final Matches.
The winners progress onto the Semi Final and Medal matches.

Tuesday 24 October 2000 - Day five – Individual Finals and Medal Matches

The afternoon session sees the Men W1, W2 and Standing (4:50 pm) Semi Finals,
Bronze and Gold/Silver Matches, followed by the medal ceremony.

Wednesday 25 October 2000 - Day six - Teams Event – Afternoon Session

From 1:00 pm to 5:30 pm the Men's teams shoot the 1/4 Finals, Semi Finals,
Bronze and Gold/Silver Matches, followed by the medal ceremony.
Polio Particles

Mary Westbrook

Polio Particles is compiled by Mary Westbrook as items on polio or post-polio in the press or professional journals catch her eye. Included in this series are brief reviews of books on polio or post-polio, updates on post-polio research, and other items of interest.

More About Polio Vaccine and AIDS

“Lost years let polio vaccine off the hook” reported the Sydney Morning Herald on 27 April 2000. Reports that AIDS is a by-product of the development of polio vaccine in the 1950s frequently appear in the press. The theory is that the AIDS virus passed to humans from the kidneys of chimpanzees that were used to make the early polio vaccine. However this new genetic study by Drs Korber and Bhattacharya shows that a number of strains of AIDS were established in humans by 1950 (and possibly as early as 1930), some years before the polio vaccines were first produced.

Going to the Dentist and Having Local Anaesthetics

Issues relating to general anaesthetics for polio survivors were discussed in Issue 31 (March 1997) of the Newsletter. Dr Richard Bruno, director of the Post-Polio Institute, Englewood Hospital and Medical Center, New Jersey, explained why polios require much less general anaesthetic than other people do when they have surgery, and why polios take longer to recover from general anaesthetics. In a recent article titled Preventing complications in polio survivors undergoing dental procedures, Bruno writes that while polios need less general anaesthetic, they require more local anaesthetic. He refers to two research studies which have shown that polios are more sensitive to pain than non-polios, “apparently as a result of poliovirus-damage to endogenous opiate-secreting cells in the brain and spinal cord”. While polios need more pain medication and need it for longer periods of time, Bruno comments that polios are “extremely stoic” so “are not likely to abuse or become dependent upon narcotics”. This made sense to me as I have often experienced pain after administration of local anaesthetics during dental and other surgical procedures. When I've commented that I was still feeling pain I've been reacted to with scepticism and made to feel a wimp. Support for Bruno's views is found in a recent question on the Post-Polio Central Polls that I wrote about in the last Newsletter. The poll asked polios how much local anaesthetics, such as novocaine, they need for dental and other procedures. The answers revealed that 33% need “a much larger dose than normal to keep from feeling pain” and 19% need a “little larger dose than normal”. A “normal amount of anaesthetics” was required by 42%, 2% needed a “smaller dose than normal” and 4% needed “a much smaller dose”. You can read Bruno's article on http://members.aol.com/harvestctr/Library/dental.html.

Recent Cases of Polio

A new case of polio in China in 1999 was reported in the British medical journal, The Lancet (12 February 2000). This has caused alarm in the western Pacific region where the last incident of polio was in 1997. “Both China and WHO are taking the case extremely seriously and have launched a mass inoculation and surveillance campaign” wrote The Lancet. Genetic testing has proved that the virus was imported from India. It is believed the 16-month-old boy who developed polio made contact with the virus at a festival held by a Chinese ethnic group that has trading links with India, though no travellers from India had visited the town recently. WHO says “The importation of the virus into China has been a tremendous demonstration of the mobility of the virus which means that no country can afford to relax or be complacent.”

On 26 February 2000, The Lancet reported that south-east Asia and sub-Saharan Africa are the only two remaining major areas of wild poliomyelitis in the world. This year eradication efforts are being directed at ten countries in these zones. Half of these countries have very large, dense populations and the others have internal strife which interferes with vaccination programs. Last year 6000 cases of paralytic polio were reported worldwide but these figures are probably an underestimation. There is some concern that there will be a shortage of oral vaccine this year due to the eradication program. Last year 147 million doses of the vaccine were administered!

The March issue of Polio News, from the Post Polio Support Society New Zealand, tells of a 36-year-old Auckland woman who contracted polio last year from her polio-vaccinated (Sabin) baby. She was severely affected and still requires breathing assistance. She is being treated in a spinal injuries unit. The Society has “provided a large amount of background material on polio for the family and hospital” and one member visits regularly. The case has been given little publicity and this is a matter for concern to the New Zealand Society given the debates on whether to end the polio vaccination program in New Zealand and whether to use the Salk or live Sabin vaccine.


Ed. The 7th Edition of The Australian Immunisation Handbook has just been released by the National Health and Medical Research Council. Following on from the item in the last Newsletter (How Polio Vaccines Work, Issue 44, February 2000) which included remarks about recent changes to the American poliomyelitis vaccination schedule, readers may be interested in the Australian viewpoint on this as reflected the Handbook's section entitled Global eradication of polio. [Note that in the following quotation IPV stands for inactivated poliomyelitis vaccine (Salk, administered by injection), while OPV stands for oral poliomyelitis vaccine (Sabin)].

Because of the rapid progress in global polio eradication and diminished risk of wild virus associated disease, IPV is now preferred in the USA for all 4 polio vaccine doses. This change also came about because of concern about the 8-10 cases of vaccine-associated paralytic poliomyelitis (VAPP) out of a birth cohort of 2 million per year, or 4-5 cases per million children, reported each year in the USA. The advantage of using IPV was considered to be a potential cessation of VAPP. The disadvantages of IPV are the complexity of the schedule, the increased number of injections required at each vaccination visit for young infants, and the very much greater cost of the IPV than OPV in countries such as Australia, compared with the USA. The WHO strongly supports the use of OPV to achieve global eradication of poliomyelitis, especially in countries with continued or recent circulation of wild type poliovirus. This recommendation is endorsed by the US and European authorities including those who routinely use IPV. The polio vaccination schedule in Australia is under constant review and may change in future. There have only been 2 cases of VAPP in Australia in the past 13 years, from birth cohorts of about 260,000 children per year (0.5 cases per million children), which is 10 times lower than the US rate. When combination vaccines containing IPV are available, the feasibility and costs of changing the Australian schedule will be reviewed, bearing in mind that once polio is eradicated within a few years (possibly as early as 2007), polio vaccination will no longer be necessary.


Victorian Polio Survivors Tell Their Stories

The Victorian Women with Disabilities Network has recently published a book on the experiences of women with disabilities. Its title Oyster Grit comes from “The grain of sand - the grit in the oyster - that causes such painful irritation (but) may also produce a pearl”. The 16 contributors include polio survivors Jane Trengrove who painted the cover illustration, Margaret Cooper, Chris White, Barbara Ratcliff, Ilma Lever and Betty Bone. Their stories fill more than half the book. Betty's narrative Pearls tells of contracting polio in 1937 and being hospitalised until 1960 when she moved to a hostel. She obtained work as a secretary in a sheltered workshop and, in due course, an electric wheelchair. Her story reminds us of the enormous advances in aids and quality of life for people with disabilities that have been achieved over recent decades. Betty's account of hospital life will bring back many memories. She recalls the food (remember the tapioca we called frogs' eyes?) and hiding it under the mattress until a sympathetic visitor removed it. Books were her lifeline. The tragedies and joys of Betty's life have led to profound compassion. “My unusual lifestyle has allowed me to be more understanding and empathetic towards other people's life experiences where they have endured isolating circumstances like lengthy hospitalisation, imprisonment, kidnapping, being taken hostage. All of these are conditions imposed from outside oneself, when control of one's life and actions are removed and exercised by others: the Holocaust, the Russian Gulags … economic deprivations suffered by black Africans.” Margaret Cooper and Christine Ashby in an article titled Top this exchange stories of their experiences with the able-bodied e.g. the portly gentleman at the traffic lights where Margaret was waiting in her wheelchair who “hissed at me to wait till the lights were green. Did he think I was about to play in the traffic?” Ilma describes how learning to drive enriched her life. Poems such as Tiredness describe everyday disability experiences. I liked the quote from Alan Marshall that “If all the people with emotional disabilities were in wheelchairs, there'd be no room on the road for the cars.”

The book sells to the waged for $12 (plus $2 postage) and to the unwaged for $7 (plus $2 postage). You can purchase a copy by sending your cheque to Betty Bone, 2 Flete Avenue, Armadale, Victoria, 3143.

Would a cure for spinal cord injury help people with polio?

A recent newspaper headline, World first: Monash team grows nerve cells, went on to say that the discovery gives hope to Christopher Reeve and others with spinal cord injury that there may one day be a cure for their condition. Will this research help people with polio? No, explains Dr Richard Bruno. “The hope with spinal cord injury is that new nerve cells would 'bridge the gap' in the damaged cord and 'heal the cut', allowing the brain to talk to the motor nerves again. This notion requires a small and relatively clean 'gap' and intact motor neurons down below the lesion. In polio survivors there are NO motor neurons, so new motor neurons would have to grow. Then, they would have to send out new axons, like telephone wires, to the muscles they used to activate, since the old axons deteriorated 40+ years ago. This is a daunting task of 'tunnel building' through legs that have the longest nerves in the body. Finally the brain would have to send out new axons (since the old axons shrunk back toward the brain 40+ years ago) and through the spinal cord to get to the 'new' motor neurons, another incredible feat of tunnel building. So the idea of rebuilding a polio-damaged spinal cord would require a hat trick of new internal wiring. Reconnecting a newly lesioned spinal cord would 'only' require a physiological home run.”

Support Group Report

Neil von Schill        Phone: (02) 6025 6169
Support Group Co-ordinator

It is encouraging for me as Support Group Co-ordinator to know that we have such a committed and willing band of dedicated people performing the vital role of convening Support Groups in metropolitan and country areas. In speaking to these members in recent months I am continually reminded that through their efforts we have a Support Group network that is viable and functioning effectively.

As members we are fortunate that we have this support available to us and it is only as far away as a telephone. All convenors welcome a call to hear news or share a problem with old friends or prospective members. Many convenors, especially in the country, conduct a telephone Support Group, while other groups are able to access a regular meeting which provides a forum for personal contact. If you are not sure whether you are serviced by a Support Group, or would like to join a Support Group, please contact me.

At present we have groups servicing country members in the Northern Rivers (Lismore and Ballina), Grafton, Coffs Harbour, the Hunter, Central Coast, Wollongong, the Shoalhaven area, Lower South Coast, Upper Blue Mountains, Nyngan, Wellington, Cowra, Young, Griffith, Canberra and Albury. The Northern Inland area is serviced by a very effective “Round Robin” where members write a letter into an exercise book and post it to the next member who adds to it and passes it on – eventually the book returns to the convenor where it is sent on its way again.

We welcome Susie Simmons as Convenor at Orange [telephone (02) 6361 0630] who is at present providing a telephone support service. Any members in the Greater Orange Area should contact Susie with the view of establishing some face-to-face contact with other members.

In the city we have Support Groups in the Hawkesbury, Hornsby, Manly, Northside, Inner West, Blacktown/Lower Blue Mountains and Campbelltown areas. There are many regions in the metropolitan area not yet serviced by a Support Group, especially in the Eastern Suburbs, Bankstown and Liverpool areas.

Being a convenor is not an arduous nor time consuming task. If you are interested in meeting and helping fellow polio survivors by acting as a convenor, please contact me. Your help will assist us in expanding the Support Group network and help promote the activities of our Post-Polio Network.


Sydney 2000 Olympic Torch Relay

So far we are aware of three Network members who will be Community Torchbearers in this once-in-a-lifetime event. They would appreciate your vocal support along the route.

George Quinell Member of the Upper Blue Mountains Support Group, will walk with the torch in the Lithgow area on Sunday, 3 September.
Margaret Greig Renowned artist who paints with the brush in her mouth, will carry the torch on her wheelchair in the Penrith area on Monday, 4 September.
Gillian Thomas President of the Network and Newsletter Editor, will carry the torch on her scooter in the Randwick area on Thursday, 14 September.
Post-Polio Post        . + . + . + . +

In March the Committee was delighted to learn that the Network had received a Premier's Community Award in recognition of its contribution towards the well-being of older people in the community. Past Treasurer Marianne Newton accepted the award on our behalf at a reception hosted by the mayor of Randwick, Councillor Dominic Sullivan, on 23 March. Shortly afterward we received the following letter from Minister Faye Lo Po'.



30 March 2000

Dear Ms Thomas

I am writing to you to congratulate your organisation Post-Polio Network (NSW) on receiving a Premier's Community Award. These prestigious awards recognise community groups that contribute greatly to the well being of older people in the community.

It gives me great pleasure to be able to personally thank you as a representative of Post-Polio Network (NSW) for your efforts towards older people. Community groups such as Post-Polio Network (NSW) provide a valuable service towards making NSW a great state in which to grow older. Your work is truly commendable.
I wish you a wonderful Seniors Week 2000.

Yours sincerely

Faye Lo Po' MP
Minister for Community Services
Minister for Ageing
Minister for Disability Services
Minister for Women


A member rang recently with a cautionary tale about purchasing and taking delivery of expensive equipment by yourself. She uses a wheelchair and bought a new electric bed not long ago. This was delivered to her home when she was alone. The bed looked okay from her wheelchair vantage point, but after using it, and following closer inspection by friends, she realised that the bed had problems and appeared to be second-hand. After some initial difficulty getting the supplier to listen to her concerns, she is now pursuing her complaints with the company management and is hopeful of a satisfactory outcome. She has recommended that wheelchair users who may not be able to perform a detailed inspection of such equipment make sure they have someone present who can do so, before accepting and paying for the goods. In this way she hopes that others might avoid the situation she found herself in.


Member and past Committee Member Gordon Munday gives valuable assistance to the Network by collecting and delivering twenty boxes of Newsletters to the Mail Centre following each mail-out working bee. Gordon provides this courier service at no charge, and we are very grateful for the unselfish donation of his time and transport. Readers who know Gordon will be pleased to learn that he and his wife Michelle are proud parents again. Timothy John was born on 21 April, a brother for Ben. Congratulations!

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