Return to Main Newsletter Page Post-Polio Network (NSW, Australia)Inc.   PO Box 888 KENSINGTON NSW 1465 AUSTRALIA Nola Buck (02)9636 6515
 
From the President’s Desk Nola Buck
Hello to all new members - welcome to the Network and we look forward to meeting you.
Work towards the 1996 International Conference is progressing steadily. An enthusiastic sub-committee meets monthly to review progress and plan future action guided by the expertise of our co-ordinator, Jean Skuse. With your last Newsletter you will have received an "Expression of Interest" form which, if you propose attending the Conference or having input into it (such as convening a workshop), should be completed and returned to Jean by 31 October 1995. Although this date is not set in concrete, we need some indication of numbers attending in order to plan the program and set the registration fee. We have been given very good daily rates for the hire of the venue, but these depend on a minimum number of attendees, so we require feed-back from you, the members. Please see details of our fund-raising efforts on page 3. We need your help to make the Conference a reality.
 
In November 1994, a steering committee for the Physical Disability Council (PDC) of NSW was elected to draft a constitution. Member Allan Quirk was appointed to the Steering Committee. The aim of the PDC of NSW is "To promote equality of opportunity for people with physical disabilities by providing a representative voice". The role of the PDC of NSW will be to represent people with physical disabilities on the Australian Disability Consultative Council (ADCC) which has a representative from each of the six national peak organisations. The ADCC provides advice to the Minister for Human Services and Health and her Department.
 
The PDC is now seeking members and will be presenting a constitution for approval at a meeting to be held on 25 November 1995. It is unfortunate that this meeting clashes with our next Seminar, but if you wish to have input into the PDC, complete the enclosed membership form. Postal voting is an option and upon return of a completed membership form voting papers will be forwarded to you. As I believe polio survivors constitute a major slice of the physical disability population it is important that we have a voice on the PDC, so please support Allan.
 
The Seminar about Osteoporosis on Saturday, 25 November 1995 should be a very informative one and I do hope you can attend. Full details appear on page 2. Seminar speakers are very busy people, who freely give of their time to inform us of ways in which we can manage the late effects of polio. It is always very encouraging to them (and to the Management Committee) when we have an over-flowing meeting room.
 
As this will be the last get-together before Christmas, come along and make this an end-of-the-year celebration to remember. If you wish to continue after the meeting at the Parramatta Leagues Club (just across the road) ring me and I'll make a reservation.
 
 
The next Seminar will be held on Saturday, 2 March 1996. Please note this date in your diary. The venue and the speaker (and the dates for all other 1996 Seminars) will be advised in the next Newsletter.
  Seminar : Osteoporosis
 
Date: Saturday, 25 November 1995
 
Time: 1:00 pm
Bring a packed lunch to eat from 12:00 pm and catch up with
friends before the Seminar begins. As usual, fruit juice, tea
and coffee will be provided.
 
Venue: The Northcott Society (previously the NSW Society for
Children and Young Adults with Physical Disabilities)
2 Grose Street, Parramatta
 
Ample parking is available in a car park at the end of the street
(the venue is then a 100 metre walk away).
Limited parking is available on the premises. It would be appreciated if
those who are more mobile would leave this closer parking for
members who are only able to walk or wheel short distances.
 
Osteoporosis is the gradual loss of bone density to the point where bones become weak and are vulnerable to breakage from relatively minor stresses. To some extent, loss of bone density is inevitable over time. However, people who achieve only a modest bone density peak in early adulthood run a relatively high risk of osteoporotic bone fractures. This is particularly so in later life when bones are weakened by the bone loss experienced by post-menopausal women, and by the ageing process in both men and women. Osteoporosis afflicts up to two thirds of women and one third of men over the age of 60 in Australia.
We are very fortunate that Professor John Eisman has made time in his busy schedule to speak to us on this important topic. Professor Eisman is the head of the Bone and Mineral Research Team at The Garvan Institute of Medical Research. Garvan’s combination of clinical and molecular research has enhanced the understanding of what determines peak bone density, and has also proved to be a powerful tool in developing new ways to prevent and treat osteoporosis.
Professor Eisman’s presentation will of interest to all Network members, men and women. We hope to see a good turn out.
This will be our last Seminar for 1995. Please bring a plate to help share the festive spirit at afternoon tea. This will commence at 3:00 pm, following Professor Eisman’s presentation.
International Post-Polio Conference 8-10 November 1996
Living with the Late Effects of Polio
To cover the costs of the Conference we hope to have two streams of fundraising. First, we will be approaching large institutions (such as banks), well-known organisations, and suppliers of aids to people with disabilities. If you know of someone we could contact in this way, please ring Nola on (02) 636 6515.
 
Second, we are seeking the assistance of members. Alice Smart has started the ball rolling by asking members who attended the last seminar to sell boxes of chocolates. Her next effort will be Father Mac's Christmas Puddings. Alice is very enthusiastic, so please assist her by selling or buying a pudding. This is our opportunity to help ourselves. NO money is required up front - just return the money obtained from the sale to Alice.
Alice and Nancye Bonham (Support Group Co-ordinator) will also be contacting Support Group Convenors to request that they and/or their members help with this very vital means of obtaining funds for the Conference.
Members not belonging to a support group are also urged to help.
For further information, please contact Alice Smart on (02) 799 3847.
 
 
The following presentations were made on 30 March 1995 at the 12th World Congress of the International Federation of Physical Medicine and Rehabilitation, Sydney. Network member Hazel Atkinson presented her story to the Polio Consumers’ Forum, while Dr Middleton’s paper was presented to her peers earlier in the day. We also have a copy of a paper which Professor Simon Gandevia presented, however its publication has been held over until we can also get a copy of the slides which accompanied the paper.
 
My Story Hazel Atkinson
 
Having no obvious crutch or hands to support me, few people realise the extent of my disability hidden beneath my clothing.
For the past 44 years, from the age of 29, the average person (man in the street or shop assistant) greets me with "Have you arthritis dear?". "No, I have had polio" is my reply.
 
"Aren't you lucky, you can walk!"
"Yes I am, but I can't dress myself".
"Really" ... is always the somewhat shocked reply.
 
In 1951 I was a happy, healthy wife and mother of three young children aged 5 years, 3 years, and 5 months, when the poliomyelitis epidemic struck me. We lived in the Riverina, 400 miles west of Sydney. I lay in the Narrandera District Hospital for six weeks before treatment was found for me in the Royal North Shore Hospital. It took all this time to find a hospital. Concord Hospital, through the RSL, were also happy to admit me on the same day as Royal North Shore. Incidentally my father had to go politically to seek treatment for me after doctors and friends had tried so hard.
After being flown to Sydney I spent 5-1/2 months in Royal North Shore Hospital never putting my foot to the ground - I then spent two months as an out-patient before returning to Narrandera for a further 15 months strapped to an aeroplane splint. Somewhat like a horse's harness.
With no home care or financial help we struggled on with part-time daily help. My husband had to work since he was our only source of income.
As I had to go to Sydney every 2, 3 or 6 months we gradually decided to employ live-in help from a girls' home until we found my baby (under 2-1/2 yrs) covered in bruises from ill-treatment.
 My home-coming found me with two paralysed hands - my right was completely paralysed including the arm, and the left hand flailed with only 1/4 power! After the aeroplane splint was removed I was provided with a body brace with steel up the back as my left lumbrical and intercostal muscles on the right were badly affected.
My first big tasks were trying to learn to wash up, and to sweep doing it my way - using the thumb and first finger and the elbow joint. I also had to learn to write again with my left hand, again resistance between fingers.
I have never been able to full dress myself (my arm gets caught) though 90% of the time I manage to undress and shower myself.
My footcare is a big priority as I can easily fall and my hands or arms are not strong enough to save myself. When travelling on the new buses I find myself being thrown from an aisle seat very easily when they brake as I lack so much muscle power.
For over 30 years I have received varying types of physiotherapy for upper back weakness and its effect on my left hand and arm. Because I have been on an air pressure machine and humidifier for five years I sometimes have a swallowing problem because the muscles in my throat collapsed and I have a weak diaphragm.
I still cannot dress, cut meat, peel vegetables, do my hair, cut nails, use a bath, use scissors, mend, undo packets etc., alight from cars, get out of low seats or climb high steps.
In 1956 I decided to seek advice from a Macquarie Street specialist on possible improvement. He put me into Sydney Hospital for a tendon transplant from my marriage finger to provide an opponens thumb muscle as I have no use of either the thumb or first finger on either hand. Unfortunately, it was unsuccessful as the doctor had not made medical staff aware of my paralysed right hand and arm so I fell on it while convalescing at Prince of Wales whilst getting into a high bed.
 
The wonderful help from the Independent Living Centre NSW (Inc.) and Technical Aid to the Disabled has improved my life beyond words. These dedicated groups have made me keys for my front door with attachments, a helmet for my breathing machine so I can be independent, enlarged knobs for my TV and radio, grips for my door knobs, washing machine and bath cleaning brush.
New ways can be found for people with hand paralysis to do tasks such as writing, doing up buttons and eating. Correct positioning or adapting equipment may be helpful. My family were amazed when I used chopsticks (even if only for a few mouthfuls).
My attitude has been "forget the handicap and try" - sometimes it works.
Frustrations can be many but if I find I cannot achieve something, I try going away for a minute and then try again. Quite often it works.
My life has been very full in the field of Access (three committees and seminars), local Historical Society and two Council Committees.
Above all, think of others and not yourself!
Ed. Hazel, together with other Network members, participated in the recent ABC Radio National That’s History program, "Memories of People Who Survived Polio". If you missed the program, a tape of it is available for loan from the Network’s Librarian, Tony Marturano. Contact Tony on (02) 587 9807.
 
A RATIONAL APPROACH TO THE ASSESSMENT OF THE MANY SYMPTOMS OF CHRONIC POLIOMYELITIS
Dr Jill Middleton
 
Dr Jill Middleton is a Rehabilitation Specialist at the Post-Polio Clinic, Prince Henry Hospital.
 Poliomyelitis is an illness associated with the development of residual muscle paralysis in a number of sufferers (and death in a small proportion) that has affected the human race for many centuries. More recently in the late 19th century patients were described who developed late neuro-muscular deterioration some years or decades subsequent to a prior poliomyelitis illness. During the second half of the 20th century there has been increasing interest in, and recognition of these late problems of deterioration in neuro-muscular function in people who had suffered prior poliomyelitis illness (with residual paralysis or weakness). Various terms have been used to describe this late deterioration, more recently the term Post Polio Syndrome has come to be used and has been defined by Halstead and others according to fairly strict criteria (1). In essence these criteria include:
 

1. Establishment of a prior acute poliomyelitis illness with some residual weakness or paralysis.
1. A period of clinical recovery with improved neuro-muscular function.
1. A period of stable or static neuro-muscular function (generally lasting 10-20 years or more).
1. Subsequent onset of symptoms of deterioration including, most commonly, new or increased muscle weakness, new or increased fatigue and fatiguability, and new or increased pains (in muscles or joints).

 A further criterion for clinically reaching a diagnosis of the Post Polio Syndrome has been that the patient should not have any evidence of any other medical condition or disorder, which could be the cause of their late deterioration.
It is of note that the major symptomatic developments, which may lead to the Post Polio Syndrome diagnosis relate to subjective complaints of symptoms which themselves are non-specific.
 
This presents the clinician with a number of diagnostic dilemmas.
Various other common pathologies may cause the same symptoms. There has not been any consistent generally identified abnormality, whether on electro-physiological studies, haematological, biochemical, immunological or endocrine assessments or on various imaging procedures that has clearly been established as having a close association with the symptomatic complaints, although various abnormalities in each of these areas of assessment have been identified in some patients with prior polio.
On the basis of such deficits or abnormalities, various theories of the aetiology of these late post polio deterioration effects have evolved. Research studies through Professor Gandevia's Unit at the Medical Research Institute (Prince Henry and Prince of Wales Hospitals System) have identified some abnormalities of muscle function which may have a more direct correlation with the symptoms of deterioration experienced by some patients (2).
The clinical problem for the Rehabilitation Specialist remains, however, the patient who presents with symptoms most commonly of fatigue, increasing weakness and often pain and, associated with these, perceived reduction in general functional capacity in the patient's life situation.
Our approach through the rehabilitation department and Post Polio Clinic at Prince Henry Hospital in the clinical context has been to look at fairly prolonged initial medical assessment by the Rehabilitation Medicine Consultant.
Areas considered include:

1. Establishment of the likelihood of the patient having experienced a past acute of poliomyelitis illness with details of that illness and the nature and severity of the initial effects (including particularly extent of involvement with paralysis - limbs, trunk, respiratory system).

 

2. Subsequent course of the patients clinically (including remembered/perceived neuro-muscular recovery, use of aids or orthotics, etc), other interventional treatments (including orthopaedic surgery over the years).

 

3. General life situation parameters (educational attainment, work, leisure and domestic background).

 

4. More detailed description of the nature and time course of the more recent symptomatic complaints, together with review of intercurrent pathologies (particularly other illnesses or injuries of a serious nature).

  From that background information we would aim to establish and to differentiate:
 

1. Long-standing residual effects of the original polio illness.

 
2. Late musculo-skeletal deterioration effects which may be considered to be secondary to the initial polio illness effects (eg late spondylitic degenerative changes in a patient with a paralytic scoliosis, damaged peripheral joints due to excessive mechanical loading of joint structures in the presence of significant muscular paralysis with ligament stretching, and secondary degenerative joint changes arising in this situation).

 
3. Other intercurrent pathologies or co-morbidity (such as endocrine abnormality - hyper- or hypo-thyroidism; vascular disease and its sequelae - coronary artery disease, cerebro-vascular disease, peripheral vascular disease effects; respiratory disorders - chronic obstructive airways disease and chronic bronchitis).

 
4. Identification of a separate late post polio neuro-muscular deterioration independent of 1, 2 or 3, which may perhaps more appropriately be described as a Post Polio Syndrome disorder.

It must also be noted that the presenting population is an ageing population.
Having identified these various categories of problem, an approach to management of the problems is planned with the patient.
Treatable intercurrent medical or surgical pathologies need appropriate treatment. This may include referral to other specialists for further investigations and particular management and, concurrently with this, consideration of late post polio deterioration effects which themselves may warrant and benefit from more specialised intervention (such as joint replacement surgery for severely arthritic joints, spinal surgery for damaged and degenerate spines with secondary nerve root or spinal cord embarrassment of a structural nature, and specialised respiratory interventional measures).
This latter area is of particular importance in terms of potential for causing morbidity and mortality.
Often multiple factors are involved. These may include non-polio related airways disease, polio related weakness or impairment of respiratory muscle function, late post polio effects (such as chest wall rigidity/reduced vital capacity from deformities associated with long standing paralysis of trunk musculature and development of severe scoliosis), impairment of respiratory function during sleep and/or during general respiratory compromise from, for example, transient intercurrent events such as respiratory tract infections. Detailed assessment of respiratory function may require sleep studies of a sophisticated nature and management of problems that are identified may include requirement for mechanical assistance with ventilation including CPAP for obstructive sleep apnoea problems, but also not infrequently, requirement for further assistance to overcome impairment of respiratory muscle strength or drive (quite separate from obstructive respiratory problems).
Rehabilitation management of the person suffering from late post polio symptomatic problems may be considered under the headings of Pain, Weakness and Fatigue and fairly "standard" rehabilitation approaches may be directed at these problems. It is however, essential that the overall total patient context is considered in planning suitable treatment programmes and recommendations in particular with regard to the consideration of exercise. We would note that the majority of patients presenting to the Post Polio Clinic have pushed their physical capabilities to a high degree over the decades following their initial illness and overuse is far more common that under- or dis-use. This push has resulted in "over-achievement" in all spheres of life when their level of physical, musculo-skeletal capacity is considered objectively. There is a strong tendency to see the solution to reduced physical capacity as lying in every increasing exertion.
However, commonly, their maximum physical functional capacity has deteriorated and increased levels of physical dependence (whether on mobility aides, orthotics, medical/surgical interventions or family and community support services) must be accepted. Concomitantly there may also come a decrease in economic and social capacity and independence. These developments result in a tendency to particular emotional and psychological needs in patients presenting to the Post Polio Clinic.
References

1. Halstead, L.S., Post-Polio Syndrome: Definition of an Elusive Concept, in Munsat, T.L., Ed. Post-Polio Syndrome, 1990, 23-28.
2. Allen, G.M., Gandevia, S.C., Neering, I.R., Hickie, I., Jones, R. and Middleton, J., Muscle Performance, voluntary activation and perceived effort in normal subjects and patients with prior poliomyelitis. Brain (1994), 117, 661-670.

POLIO IN PERSPECTIVE FOR 1995 Dr Jacquelin Perry
The following article was recently obtained from the Internet and was first published in the Rancho Los Amigos Post-Polio Support Group Newsletter, March 1995.
Jacquelin Perry, M.D., Chief of Pathokinesiology and Polio Services at Rancho Los Amigos Medical Center was the featured speaker at the Rancho Los Amigos Post-Polio Support Group meeting in Downey, California, on December 10, 1994.
During the beginning portion of this lecture, Dr Perry reviewed some basic medical questions regarding post-polio syndrome, such as: who gets PPS, what causes it, how is it diagnosed? She went on to explain muscle weakness in more detail before discussing lifestyle modifications, tips for saving your shoulders, and exercise guidelines. She concluded by telling what we can do, along with some cautions.
POST-POLIO GROUPINGS
Many people assume that post-polio syndrome (PPS) is inevitable but it is not. Although 95% of the people who come to the Rancho Polio Clinic do have a problem, there are a curious 5% of clinic patients who ask, "Do I have a problem?" Since people who do not have a problem do not come to the clinic, Dr Perry divides polio survivors into three groups.
Group 1 - ASYMPTOMATIC (history of polio with no current symptoms). These people can continue their activities as usual. But if they start having problems, they need to cut back on their activity level.
Group 2 - POST-POLIO SYNDROME (new symptoms of pain, fatigue, or function). These patients say, "My leg hurts", or "My thighs hurt", or "My calves ache". For this group, the patient's lifestyle has exceeded their physical capacity so they must make a change.
Group 3 - POST-POLIO SEQUELAE (Post-Polio joint degeneration from overuse). These people may experience joint tenderness, joint pain, deformity, and/or degeneration that can be seen on x-rays. They say, "My ankle hurts", or "My foot hurts".
 
WHY DID THIS HAPPEN?
During the acute phase of polio, 95% of the patient's anterior horn cells were either injured or destroyed by the polio virus. (These are the nerve cells that ultimately control muscles.) Within a month, 12% to 91% of these cells began to recover. Although many people seemed to "recover", the majority do not have as many motor nerve cells as normal. Therefore, their motor system is not as strong as normal. So with fewer motor units, the muscles having been working harder than normal trying to meet regular demands.
This results in overuse of the system and weakness develops, regardless if it is due to a nerve problem or a muscle problem. "If you cannot relate your symptoms to weakness of the breathing muscles, or weakness of the arm muscles, etc., then it is something else. So when you visit your doctor, don't try to bias him by saying the cause of all your problems is PPS. Be sure your doctor rules out other problems because there is no one sign, examination, or laboratory test that will confirm a diagnosis of PPS. Since a lot of physicians do not understand PPS, the patient must put what they say in perspective. Nevertheless, it has been Dr Perry's experience that the patients who come to see her and announce that they have PPS are usually the ones who do not!
 
DIAGNOSING PPS
Dr Perry bases a diagnosis of PPS on three things:

1. a history of polio;
1. a period of some recovery followed by new loss of function;
1. a physical examination that reveals:

1. scattered muscle weakness (observed during an extensive muscle test from head to toe);
2. normal sensations;
3. reflexes that are normal (2+) for strong muscles and depressed for weak muscles.

  MUSCLE MATTERS
Recovered muscles (post-polio) are less efficient since there are fewer motor units as well as larger motor units.
If muscle weakness is revealed on a manual muscle test of the upper leg, probably 1/3 to 1/2 of that muscle has been lost.
The weaker the muscle, the less frequently it should be used.
Every muscle can be overused - even those of athletes and marathoners!
If you do not have strong enough muscles for normal activities you cannot do the same activities as people with normal muscle.
For normal muscles only 20% of the fibres are at work at any one time so there is less fatigue. For polios, some muscles’ fibres may be working 100% at any given time so they get no rest and fatigue very quickly. If less than 20% of the muscle fibre is working at a given time, the muscle gets full oxygenation and works fine. As the percentage of muscled fibre in use increases "the less rest they get, the less oxygen they get, the less they have a capacity to repair themselves".
LIFESTYLE MODIFICATION
If you have symptoms and you've overused your muscles, what do you do about it? You modify your lifestyle and remove the strain.
Find ways to make tasks easier or get rid of the tasks.
Break up activities with rest periods.
Stop doing heavy tasks.
Look at the number of activities you have per day. Many people feel better with fewer activities.
Polio survivors "do not have enough muscles to live the usual vigorous life-style. So you have to make your lifestyle match your muscle strength.
Extra body weight is like carrying around a spare tyre. The recommendation is to reduce body weight by re-educating your taste buds. Dr Perry compares this to visiting a new country and learning to eat new food. She suggests convincing yourself there are other flavors in life.
SAVING SHOULDERS
The shoulder is the most mobile joint in the body. It must have muscles to support it: The deltoid muscle lifts up the arm; the rotator cuff stabilises the shoulder.
Polio patients activate twice as much of the muscle as a normal person to lift up an arm, so the muscle has less rest and fatigues more easily. You must find ways to rest your shoulder and not use it all the time.
The arm is heavy; it weighs about 5% of your body weight (3.5kg or about 8lbs). It is like having an eight pound weight hanging from each shoulder. You can take pressure off your shoulders by bending your elbow and bringing your arm and hand closer to your body.
Leaning on your arm is like leaning on your shoulder. When you push yourself up with your hands you push through the wrist, push through the elbows, push through the shoulders. This can cause impingement.
When you push yourself up with your hands the pectoral muscles are involved. The pectoral muscles are a new area of focus that have not had much attention in the past.
People who use crutches can wear out their shoulders. Their rotator cuff can be repaired and will be ok if the person quits using the crutches and rides thereafter. (It's like wearing out a sock and then darning it. But you don't get a new pair of socks.)
So how can you save your shoulders?

1. Reduce reaching.
2. Support your arms.
3. Lean back about 10 degrees when sitting (with back support) and bring work up to you.
4. Get others to do the job.

EXERCISE
When your lifestyle gives you a margin of muscle capacity that is not being used, then exercise can be considered. If there is no margin, there should be no exercise.
Muscles that test as 3+ are markedly hypertrophied (enlarged). They have to work double time for normal activities so they tire easily. These 3+ muscles are very good for short periods but they do not need more exercise.
 
Only muscles that test grade 4 or 5 should be considered for exercise. Even some grade 4 muscles are questionable - you must be sure your lifestyle gives a margin of muscle that is not being used before considering exercise for it.
If a muscle qualifies for exercise, it should be done for only 5 repetitions at 50% to 70% of capacity.
"Remember, all exercise is overload" so don't push or make muscles sore. Polio muscles will never be normal.
WHAT CAN A POLIO SURVIVOR DO?
Dr Perry says you can do anything as long as it causes no pain or fatigue that lasts more than ten minutes.
When injured, tell the doctors you don't have any muscles and need to start "teasing" the muscles right away in order to regain movement.
Be aware that people who use electric carts or scooters can develop shoulder and wrist problems. (Some vehicles can be retrofitted to avoid having to extend an arm to reach the control piece; the vehicle can then be operated with a person's arm remaining next to his body.
Keep in mind that recovery from fatigue is slow if you have "pushed" yourself.
The more you fact the facts and make your lifestyle planned, the more comfortable you will be.
Remember, that all polios have the same perception of fatigue, whether they have PPS or not. Polios are "not hypersensitive to pain - when you hurt you hurt!" So don't talk yourself out of it - protect yourself instead.
Don't forget that PPS is due to accumulated strain from chronic overuse. "So get rid of the chronic overuse".
Dr Perry's motto: "BE AN INTELLIGENT HYPOCHONDRIAC!"
 
Post-Polio Post
Network member Mrs Rosemarie Held recently forwarded information about her pneumatic back brace. What follows are excerpts from her letter.
I would like you to know more about the pneumatic (pump-up) relieving back brace I am wearing.
My left side was paralysed as a small child, from this the left side was weak and grew at a smaller rate. To compensate for that I had several leg and foot operations as a child.
From then on I managed life quite well until three years ago. I twisted my back, from then on my right side had severe sciatica and symptoms of paralysis. I had forgotten that I had a bad fall a few years earlier.
I have tried everything imaginable, even prepared myself to have an operation - every doctor let me know an operation would only have a small chance of success.
Struggling, and being nearly in constant pain, I could not stand on my legs or walk without the help of my crutches.
A friend discovered this brace and when I read all the testimonials I could get hold of I knew this was my chance. I tried to get a splint maker to make further enquiries but everything took so long and my condition deteriorated fast. The owners of the company refused to send me just the parts so I could have someone in Australia make it for me.
My only quick solution was to get myself to Switzerland - I made the trip mainly lying down. I am lucky that was my birthplace and I have still got relatives and friends there.
Since having the brace fitted, I can walk without sticks and even short distances outside the house. I manage almost without painkillers. My social life has improved and I travel sitting.
The best thing of all, I have found a person who is willing to try to make and fit pneumatic braces for other sufferers.
My only regret is that I did not know about this brace two years earlier - my spine, discs and joints would not be so bad now.
Basically, the pneumatic back brace has two functions:

1. Exact aimed extension to relieve pressure on the nerves.
2. Partial immobilisation - it is done in a way that the wearer still can move with ease - the two cylinders balance the air and there is movement from side to side.

If anyone would like to talk about this brace, I am willing to give them as much information as I have. You can call me on (02) 629 1729.
Rosemarie translated the following quotation of a medical opinion on the Pneumatic Spinal Column Reliever and forwarded it for the information of members.
WIRBELSAULEN-THERAPIEHILFE
SPINAL COLUMN THERAPY SUPPORT SYSTEM
Numerous illnesses in the area of the Lumbar-Sacral region happen on the basis of degenerative origin, the discs are worn and with that the height of the discs are reduced. With that, therefore, is a narrowing of the Foramen, quite frequently it is the cause of stubborn attacks of pain in the Lumbar-Sacral region, lumbago and sciatica.
 
Extension therapy (traction) is a reliable and well known therapy in reducing the pain, and often there is an attempt made to keep the spine in this extended position and immobilise the affected spinal joints with bandages or corsets.
With the Pneumatic Spinal Column Reliever it is possible to do the extension (traction) and immobilising at the same time. The pneumatic (compressed air cylinder) and expanding mechanism is fixed into a belt construction. An exact positioning is possible and the troubled segment or area can be targeted, extended and immobilised.
Basically, the Pneumatic Spinal Column Reliever has two functions:

1. Exact aimed extension to relieve pressure on the nerves.
2. Partial immobilisation.

 The advantage of this system is exact aiming to relieve the troubled area or spot and it can be worn all day as opposed to normal traction, which is only possible on a short time basis, and most systems need a physiotherapist to operate the traction table.
Another advantage is while the Reliever is worn an extensive rehabilitation exercise therapy can be done. There is an ease in moving the body and it should not be compared with a corset.
From this aspect one could engage this device in the treatment of degenerative spinal illnesses and degenerative instability.
It can be used successfully after an operation on the disc where a large part of the disc tissue has to be removed and rubbing and grating of the bone surfaces can be expected.
The use of the Pneumatic Spinal Column Reliever can, from all aspects, be used without hesitation and is medically recommended by doctors.
This information is meant for medical practitioners and other medical specialists.
Book Reviews
"A Summer Plague. Polio and its Survivors"
Tony Gould, Yale University Press, 1995
  Two reviews of this book follow on pages 13 and 14. I have included both reviews because they are written from different perspectives. The Network is endeavouring to get supplies of the book for sale to members. Watch the Newsletter / Information Bulletin for details.
The first review is by Dennis Hogan of the Post Polio Support Society (Inc), New Zealand. His review was first published in the Society’s Newsletter Polio News in August 1995.
During my recent visit to the UK I twice had the great pleasure of meeting the author of this book and of discussing the history and treatment of polio with him. They were stimulating occasions. The second time was over lunch in his London flat after which, with our wives, we watched the final of the Rugby World Cup. It was a memorable occasion. Tony’s wife is a New Zealander and we all wanted the All Blacks to win!
Tony Gould was a 20 year old officer in the Ghurkha regiment in Hong Kong when he contracted polio. He was badly affected and spent some time in an iron lung followed by a year in a military hospital in the UK. He was then discharged to fend for himself and find a new career, which he did in journalism.
His book is a landmark in writings about polio. It is a comprehensive history of the story of polio from the New York epidemic of 1916 through to the development of the vaccines and the mass immunisation campaigns of the late 1950s. It is a very scholarly book, thoroughly researched and referenced but it is never dull. The writing has a forward momentum that maintains the reader’s interest. A great strength is the insightful portrayal of the many important people who contributed to the fight against polio - Draper, Roosevelt, O’Connor, Kenny, Salk and Sabin amongst them.
"A Summer Plague is in two sections. The first eight chapters comprise the historical survey and this is followed by fifteen personal stories - seven from the UK, seven from the USA, and the author’s own story. These stories have a great deal to say to polio survivors and make fascinating reading. Tony Gould’s account of his illness and of coming to terms with the new status of disability is as good an essay on that subject as I have read.
This is a handsome book - beautifully produced, well illustrated and with a very striking cover. It is not expensive by today’s standards. It should be available to all polio survivors and particularly to all who assess and treat them. I thoroughly recommend it.
The second review is by Tom Shakespeare and was first published in Disability Now, July 1995 (England).
The nineties are shaping up to be the decade of disability. However, this timely study adds to the bandwagon, rather than attempting to understand an issue that is fundamentally social rather than epidemiological.
Perhaps this is because the response to polio in the first half of the twentieth century was fundamentally about denial. President Franklin Delano Roosevelt, whose story overshadows the first half of this book, symbolises the inability of Western societies to come to terms with the disease, and the disabled lives that resulted.
Unlike Hugh Gallagher, whose Splendid Deception focused on FDR's attempt to pass as non-disabled, Gould plays down the political dimensions of the issue, and of the polio epidemic in general.
Instead we have a book about medicine, doing for polio what The Band Played On did for HIV/AIDS: covering the epidemic, the search for a cure and especially the vaccine.
This personalised account shows no understanding of recent developments in the disability world, not least language: here we read of "the disabled", "the wheelchair bound" and "the polios". Gould may possess impairment, but he lacks insight into disablement.
The book's second half contains accounts of individuals from Britain and America (the briefest mention of the Developing World experience makes the coverage highly Eurocentric).
Again the theme is denial, people like Ian Dury, only recently affiliating with the disability movement, rather than polio survivors such as Alan Holdsworth (in the UK) and the late Ed Roberts (in the US) who would have given a radically different account.
There is much of interest here, and others may be less disappointed with the sentiment (ingenious adaptations, heart-warming relationships) and the medical viewpoint.
I preferred the discussions of Post-Polio Syndrome, which seems to have led to survivors "coming out" - recognising frailty and ending the denial that disability has anything to do with them.
We see the acknowledgment of difference at last, despite the lack of acknowledgment of discrimination and prejudice.
The mass impact of polio was a missed opportunity for the West to come to terms with the social dimensions of disability, and acknowledge the ubiquity of impairment.
That historic failure is echoed in the limitations of this book - although it may be that the decades of denial and discrimination are finally coming to an end for disabled people.
Support Group Co-ordinator’s Report
This is my first report as Support Group Co-ordinator and I would like to welcome all new Convenors and all new Support Group members. I hope to visit as many groups as possible in the near future and get to know you all personally.
Thank you to all Convenors who sent in reports - these have been incorporated in the updated listing of Support Groups below. There are still a number of reports outstanding, though. It is essential for the smooth running of the Network that all Convenors send in their quarterly reports as required by the Support Group Guidelines. Even if you convene a telephone support group, we do like to know how you are going. Communication is what the Network is all about.
If any groups have any queries, or just want to ring up for a chat, please feel free to contact me. I will do what I can to assist with any problems. If you have ideas about how either I or the Management Committee can help you as a Support Group Convenor, again please call me or drop me a line.
Nancye Bonham Support Group Co-ordinator (045) 87 7719
Post Office Box S602
South Windsor NSW 2756
Now read on for Support Group details.
A.C.T. Maureen Kelleher 30 Erldunda Circuit, Hawker ACT 2614 06 254 9288
Brian Wilson 5 Hussey Cove, Bonython ACT 2905 06 293 2747
This group is doing fine and growing. Maureen and Brian keep in close contact with the Management Committee and keep us up to date with their activities and interesting guest speakers.
Albury Neil Von Schill 358 Jacinta Court, Lavington NSW 2641 060 25 6169
No report received.
Bass Hill To be appointed
We are sorry to hear that Andreana Salapatis has had to resign as convenor. We wish her well and hope to appoint a new convenor as soon as possible. Any offers?
Blacktown Bernie O’Grady 6 Green Meadows Crescent, 02 688 3135
Toongabbie NSW 2146
Jeanne Parkes has also resigned as she has moved out of the area. Bernie O’Grady will be taking over as Convenor and we look forward to getting reports from him.
Campbelltown Brian Toby 23 Bowerbird Avenue, Ingleburn NSW 2565 02 618 2279
Brian convenes a telephone support group and would like to hear from members in his area.
Central Coast Joan Turner 68 Booker Bay Road, Booker Bay NSW 2257 043 41 6704
Joan Turner is the new Convenor in this area, having taken over from Barbara Merrington. We hope all members in the area will support Joan.
Coffs Harbour Joan Ward-Harvey 36 Vera Drive, Coffs Harbour NSW 2450 066 51 3104
Doing well. At a recent meeting, members were addressed by People with Disabilities (NSW) President, Ian Cooper, who lives in the area.
Cowra Vera White "Woodlands", PO Box 61, Cowra NSW 2794 063 42 2647
Vera convenes a telephone support group and would like to hear from members in her area.
Ermington June Brown 4 Woodward Street, Ermington NSW 2115 02 638 1392
June now convenes a telephone support group and would like to hear from members in her area.
Grafton To be appointed
We are still waiting for someone to volunteer to convene this group. Any offers?
Griffith To be appointed
We are still waiting for someone to volunteer to convene this group. Any offers?
Hunter Area Barbara McCormack 4 Englund Street, 049 51 1647
Birmingham Gardens NSW 2287
This group meets monthly and always has a good turnout.. They have achieved a lot since they commenced and have recently gained the support of local rehabilitation specialists to enhance GPs’ awareness of the late effects of polio.
Inner West Joan Mobey PO Box 91, Glebe NSW 2037 02 660 8769
This was the Network’s first support group and is still very active with Joan at the helm. The Management Committee would like to send a special thank you to members Bill and Claire Dawson for their unselfish and untiring help to the members of the support group. Their efforts are greatly appreciated by all.
Lane Cove Beverley Baker PO Box 878, Lane Cove NSW 2066 02 418 6318
(W) 02 427 5711
Beverley is the new Convenor of this group. We wish her well and look forward to reports of support group activities.
Liverpool- Robyn Robinson 168 St George Crescent, 02 771 4176
Sutherland Sandy Point NSW 2171
No report received.
Murwillumbah Ellen Gregg PO Box 1114, Murwillumbah NSW 2484 066 72 2425
This group has only recently been established by Ellen. She has already made a number of reports and has been in contact with Murwillumbah Hospital about establishing a rehabilitation service for post polios. Well done! We look forward to hearing further news.
Northern Inland Barbara Unit 19 St Andrews Village, Tribe Street, 067 66 5093
Chapman-Woods Tamworth NSW 2340
Barbara convenes a telephone support group and would like to hear from members in her area.
Nyngan Marion Wardman PO Box 107, Nyngan NSW 2825 068 32 1350
No report received.
Port Macquarie Jan Killelea 1/44 Granite Street, Port Macquarie NSW 2444 065 83 3502
No report received.
Roselanders John Burns 22 Graham Road, Narwee NSW 2209 02 534 2751
No report received.
Shoalhaven Judith Orford 70 Sheaffe Street, Callala Bay NSW 2540 044 46 5346
No report received.
Upper North Shore Barry Palmer 7 Beryl Avenue, Mount Colah NSW 2079 02 457 9959
No report received.
Wellington- Hugo Orro "Tabletop", Wellington NSW 2820 068 46 7272
Dubbo
No report received.
Young Jean Robinson 32 Nasmyth Street, Young NSW 2594 063 82 4337
No report received.
% % % % % % % % % % % % % % % % % % %
  The President and Management Committee wish you a Happy and Holy Christmas and a Healthy and Peaceful New Year
 
' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' ' Return to Main Newsletter Page