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Post-Polio Network (NSW, Australia)Inc.
 
PO Box 888 KENSINGTON NSW 1465 AUSTRALIA
Nola Buck (02)9636 6515

Editor's Corner
Welcome to the first Newsletter for 1996. The year ahead promises great things and will culminate in the first International Post-Polio Conference, Living with the Late Effects of Polio, to be held in New South Wales. You owe it to yourself to attend this important event; for most of us it is the first opportunity to attend an international Conference right on our doorstep. It is shaping up to be the most informative and interactive Post-Polio Conference yet. The Registration Form for the Conference is enclosed; please return it today.
The Committee would like to express its appreciation to all those members and friends who answered our call to assist the Network in a practical way by joining our telephone account discount fund-raising plan. Your forms have now been sent on to the telecommunications reseller for processing. It's not too late to return the blue form, so if you haven't got around to filling it out yet, please do it now and help the Network with its important endeavours.
As promised in the last issue, here are the Seminar dates for 1996. Before you turn over the page and start reading, please put the dates in your diary to make sure you keep them clear. We always aim to have a Newsletter with full details mailed to you about three weeks before each Seminar, but in case circumstances beyond our control cause our timelines to slip a bit, at least you will know the confirmed date for the Seminar.
 
 
 
Post-Polio Network (NSW) Inc - Seminar Dates for 1996
 
 
 
   
Saturday, 2 March 1996 Seminar topics : Exercise, Immunisation
  Venue : Northcott Society, Parramatta
  (See full details on Page 2 of Newsletter)
   
   
Saturday, 1 June 1996 This will be the Annual General Meeting
  Seminar topic : to be advised
  Venue : to be advised
   
   
Saturday, 7 September 1996 Seminar topic : to be advised
  Venue : to be advised
   
   
Friday, 8 November 1996 to International Post-Polio Conference
Sunday, 10 November 1996 Living with the Late Effects of Polio
  Venue : Merroo Conference Centre, Kurrajong
   
 
Seminar : Exercise For All
 
Date: Saturday, 2 March 1996
 
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.
 
Our guest speaker will be John Tilden who is a consultant exercise programmer and registered fitness leader with expertise in exercise programming for special populations. His applied-to-life exercises, rather than non-specific exercise such as aerobics, improve the participants' capacity to function in daily activities with greater daily movement awareness, confidence and skill.
The purpose of John's programs is to introduce a gentle form of exercise to people who feel they can't participate in exercise due to such things as spasticity of muscles, lack of co-ordination, lack of confidence, joint pain, restriction of movement, poor balance and poor motivation. The programs are ongoing and take participants from chair exercises through to free standing balance and weight transfer movements using breathing and movement integration techniques which correct subconscious movement patterns. They cater for all ranges of joint and movement function and ability while offering an appropriate exercise challenge. John Tilden's programs educate through movement about correct balance and spatial control for daily tasks and identify mobility and alignment problems prior to weight bearing movement.
John will first speak about his exercise programs and then demonstrate them. This is a Seminar you won't want to miss, especially after indulging over Christmas!
 

Following a break for afternoon tea, we will be addressed at 3:00 pm by a representative from the Federal Department of Human Services and Health about the important issue of immunisation against childhood diseases. The speaker will discuss how Network members can help to get the immunisation message across to the parents of young children. For the background to this presentation, see pages 9-10.
Vale - Beryl Tubb
It is with much sadness that I report that Beryl Tubb, sister of Network founding member Gwen, passed away on 13 January 1996 after a long illness. Despite the pain she was in during her latter years Beryl had an unstintingly cheerful disposition and was always willing to lend a hand in Network activities. Many members will remember Beryl from Network seminars where she would be found hard at work organising refreshments. Beryl was a good friend of the Network and other disability organisations. This was testified to by the large number of people who gathered at Ashfield Presbyterian Church to farewell her. Beryl was well-loved and will be greatly missed.
 
International Post-Polio Conference 8-10 November 1996
Living with the Late Effects of Polio
The Conference Planning Committee is hard at work investigating fund-raising avenues and developing the Conference Program. Planning the Program was made easier by the many responses received from members about what they would like to see covered. The Committee is confident that the final Program will have something for everyone's taste. The Registration Form has now been finalised and is included with this Newsletter. We urge you all to support the Conference and register to attend as soon as possible.
Fund-raising from corporate sponsors for the Conference is moving slowly at the moment, and if you have any ideas on avenues we could try, please ring Nola on (02) 636 6515. We need members to support the hard-working Committee in this the Network's most ambitious venture to date. A successful Conference will be of benefit to all.
With respect to our other fund-raising efforts, Alice Smart got a good response to her sale of chocolates and then over Christmas the Father Mac puddings also sold very well. If you have any ideas on ways you could assist Alice in her fund-raising activities she would love to hear from you. For further information, please contact Alice on (02) 799 3847.
From the Internet - Did you know they'd had polio?
  The 65-year-old former husband of Princess Margaret, who conquered his disability to find fame as a photographer, has reverted to using a stick for walking.
Lord Snowden says he has been reading of the experiences of Sir Julian Critchley MP for Aldershot, a fellow childhood polio sufferer and a victim of the so-called "post-polio" syndrome in which the disease strikes victims decades after the original attack.
The person who placed this on the Internet, Keith, wished it known "I must strongly stress that the words above are not mine". The item was extracted from the UK Daily Telegraph front page on Monday 30 October 1995.
   Poet's Corner
Past Committee member Suzanne Rangi's book "Mud Pies & Mulberries" was published last year. The book includes a short biography and a broad ranging collection of poems. The following poem which is included in the collection had its first public reading when Suzanne presented it to a Network seminar in March 1994.
My Left Leg
This quiet child, with stunted leg,
Sad eyes that cry, always alone,
Not much to say -
Wishing the world would go away.
Wanting to run so far, so fast,
Feeling it was so unfair,
To watch with empty childhood dreams -
The other children play,
Their easy steps, their carefree ways,
The only joy is rainy days,
When every child must sit about,
It's far too wet to venture out.
 
As the years roll quickly by,
The child has grown
Teenage
Still quiet, still shy -
A dreamer
Always feeling different,
Never equal, never free
Hoping each new morning,
To walk more evenly.
 
Busy years have swiftly passed,
Finally I know the joy -
Of simply being me.
I like myself and what I see.
The silly limp, the skinny leg,
Which held me back so long,
Are part of me, what I've become,
So many wasted childhood years,
Alone and sad -
My own wet tears for company,
I have survived and now I know,
My only handicap was me.  

 
Member Joan Clarke recently sent me the following poem. Joan is a prolific author and has contributed to the Newsletter before. In 1994 she published her autobiography "All on One Good Dancing Leg" (reviewed in PPN's Information Bulletin, Issue 5, Spring 1994).
Dream of an Ageing Polio Survivor
                                            Joan Clarke 
Last night I went dancing
In my dreams.
Oh, yes, last night in my dreams
I was dancing,
Lightly prancing,
Pirouetting, one-two-stepping,
Gliding, waltzing, twirling fast,
Kicking a cancan then tangoing past
The band ... till the rhythm slowed
And sighing a sad, soft blues,
Faded. Closed. ...
The music and my dancing shoes were gone
When I woke,
Stiff, old and weary.
But I knew -- oh, yes, then I knew
That dancing dream,
That dream of tireless dancing,
Of hectic prancing,
Pirouetting, one-two-stepping,
That dancing dream --
That gloriously crazy dream of dancing
Had just been
A cruel, cruel
Joke.
Bits 'n' Pieces  
Dr Robert Adler
Suite 302
Specialist Medical Centre
151 Hawkesbury Road
WESTMEAD NSW 2145
 
Telephone: 016 285 375
   You will no doubt have heard in the press recently of the case of an unimmunised mother who contracted polio from her recently-vaccinated infant. The case report was written up in the Medical Journal of Australia and, thanks to the efforts of past Committee member Jeff Baldwin, we have received permission to reproduce the article in this Newsletter.
 
VACCINE-ASSOCIATED PARALYTIC POLIOMYELITIS
Paralytic poliomyelitis secondary to wild-type poliovirus infection has not been reported in Australia since 1986. This has largely been the result of a vaccination program since 1956, initially with inactivated and subsequently with live attenuated oral polio vaccine. Paralytic poliomyelitis in recipients of oral polio vaccine and in unimmunised contacts of vaccine recipients has been well documented outside Australia. To our knowledge, vaccine-associated paralytic poliomyelitis in a contact of a vaccine recipient has not been previously reported in this country.
Clinical Record
A 22-year old woman became unwell on 15 December 1994, with an illness consisting of fevers, headache and photo-phobia, arthralgia, vomiting and neck stiffness, with sharp pain radiating from her neck to the mid thoracic region.
She attended a chiropractor four days after the onset of the illness and noticed no improvement after neck manipulation. At about this time she noticed weakness of her upper limbs, the left being more affected than the right. There were no sensory symptoms. At a provincial hospital, her temperature was noted to be 37.6oC. General examination was unremarkable. Left arm weakness was noted, but felt to be inconsistent and possibly hysterical in nature. Blood examination showed: haemoglobin concentration, 135 g/L (normal range, 115-165 g/L); white cell count, 10.4 x 109/L (normal range, 4.0-11.0 x 109/L), with a neutrophil count of 8.1 x 109/L (normal range, 2.0-7.5 x 109/L); and the erythrocyte sedimentation rate was 9 mm/h. A provisional diagnosis of viral myalgia was made and the patient was treated with bed rest. She discharged herself on 25 December, by which time most of her systemic symptoms had settled.
She was readmitted to the same hospital four days later for investigation of her persisting upper limb weakness. Neurological examination showed moderate to severe weakness of the left upper limb, mild to moderate weakness of the right upper limb, and mild weakness of both lower limbs. Reflexes were noted to be depressed in both upper limbs. A lumbar puncture yielded cerebrospinal fluid (CSF) which contained 11 white cells/m L (normal range, < 5 cells/m L), of which 10 were lymphocytes, a glucose concentration of 3.0 m mol/L (normal range, 2.1-3.7 m mol/L) and a significantly elevated total protein concentration of 2.27 g/L (normal range, 0.15-0.45 g/L). There were no unique oligoclonal bands in the CSF (i.e., no evidence of intrathecal production of immunoglobulin). A magnetic resonance imaging (MRI) scan of the brain and spinal cord to C2 was normal. Serological test for Mycoplasma, Chlamydia, Coxiella burnetii, influenza A and B and arboviruses were not suggestive of recent infection. The result of a Paul-Bunnell test for infective mononucleosis was negative, and enzyme-linked immunosorbent assay (ELISA) for HIV-1 and HIV-2 was non-reactive.
The patient was thought to have an atypical form of Guillain-Barré syndrome and was treated with high-dose methylprednisolone, given intravenously.
She was referred to our hospital on 10 February 1995, eight weeks after the onset of symptoms. Her past medical history revealed no significant previous illnesses. She smoked 30 cigarettes a day, and occasionally drank alcohol. She was taking no regular medication.
On examination there was marked wasting of the shoulder girdle, especially the left deltoid; no fasciculations were noted. The upper limb tone was decreased on the left. There was marked weakness of the left deltoid, biceps and triceps, and moderate weakness of the flexors and extensors of the wrist and intrinsic muscles of the hand. There was mild to moderate weakness of the right deltoid, and mild weakness of the left iliopsoas. Reflexes were absent in the left upper limb (except for biceps jerk, which was present only with reinforcement). The left knee-jerk reflex was reduced. Plantar responses were down-going bilaterally. An MRI scan of the cervical spine was normal. An electromyograph showed diffuse denervation potentials and grossly reduced interference pattern in both left and right biceps. Similar, but less marked, changes were seen in the left first dorsal interosseus. There was a mildly reduced interference pattern in the left and right quadriceps, but no denervation potentials.
Further history was obtained that the patient had never been vaccinated against poliovirus. Her brother, who also had never been vaccinated, had contracted poliomyelitis 30 years ago at the age of five months, with persistent left leg weakness.
The patient's baby was given its first oral polio vaccine at two months of age, on 7 November 1994, five weeks before the onset of the mother's symptoms.
Our provisional diagnosis was vaccine-associated paralytic poliomyelitis. Unfortunately, there was no CSF available from her original lumbar puncture for testing. Blood samples were obtained from her initial and current hospital admission. Viral antibody titres by microneutralisation technique to poliovirus serotypes 1, 2 and 3 (vaccine strain), following the 1993 World Health Organisation guidelines, were obtained for blood samples of 21 December, 22 December and 15 February. These showed titres of < 8 for serotypes 1 and 3, but a rising titre to serotype 2 of < 8, 24 and 128 in serial samples.
On re-examination in March 1995, the patient's condition had not improved. To ensure protection against poliovirus serotypes 1 and 3, a course of oral polio vaccine was administered.
Discussion
Poliomyelitis is an acute illness following gastrointestinal infection by one of the three serotypes of poliovirus. Symptoms include headache, gastrointestinal upset, malaise and stiffness of neck and back, with or without paralysis. The virus is transmitted via the oral-faecal route.
The oral polio vaccine used in Australia since 1966 is a live attenuated virus which differs genetically from the wild-type virus.2 Vaccine virus is shed by the vaccine recipient for six weeks or longer,1 and unimmunised contacts of the vaccinated individual are at risk during this period. Although an enhanced form of inactivated poliomyelitis virus is available which gives long-lasting immunity without risk of vaccine-associated paralytic poliomyelitis, there are several advantages of the live vaccine. These are:   Vaccine-associated paralytic poliomyelitis is well described in both vaccine recipients and contacts of recently vaccinated infants. It is formally defined as clinical poliomyelitis with residual paralysis lasting more than 60 days after exposure to oral polio vaccine. In the United States there are 7-10 cases each year.3 The overall frequency of vaccine-associated paralytic poliomyelitis has been estimated at one case per three million doses of oral polio vaccine distributed.1 Contacts of vaccine recipients are more susceptible than the recipients themselves.4 In most series the contacts have had either no vaccination or incomplete vaccination. The greatest likelihood of paralysis is associated with the first dose of oral polio vaccine.4 Increased neurovirulence of the vaccine virus after passage through the vaccine recipient is most likely due to selection of virus with an altered genome.5
Our patient had typical clinical features of spinal poliomyelitis, with asymmetrical paralysis associated with a febrile illness; her illness meets the diagnostic criteria of vaccine-associated paralytic poliomyelitis with paralysis occurring within 60 days of contact with a recently vaccinated person. The diagnosis is supported by the rise in neutralising antibody titres, although the initial titres were surprisingly low considering there was already evidence of weakness. The misdiagnoses of hysteria and Guillain-Barré syndrome have been noted previously.3
The current vaccination recommendations for children are that oral polio vaccine be given at two, four and six months, with reinforcing doses before school and at age 15-19 years. The vaccination status of parents and other household contacts of children about to be vaccinated should be ascertained, and they should be offered a basic course of oral polio vaccine at the same time as the children.
 
References
  1. National Health and Medical Research Council. The Australian immunisation procedures handbook. Canberra, AGPS, 1994: 47.
  2. Minor PD, Macadam AH, Stone DM, Almond JW. Genetic basis of attenuation of the sabin oral poliovirus vaccines. Biologicals 1993; 21: 357-363.
  3. Querfurth H, Swanson PD. Vaccine associated paralytic poliomyelitis. Arch Neurol 1990; 47: 541-544.
  4. Nkowane BM, Wassilak SG, Orenstein WA, et al. Vaccine associated paralytic poliomyelitis. United States: 1973 through 1984. JAMA 1987; 257: 1335-1340.
  5. Evans DM, Dunn G, Minor PD, et al. Increased neurovirulence associated with a single nucleotide change in a noncoding region of the Sabin type 3 poliovaccine genome. Nature 1985; 314: 548-550.

Sullivan A, Boyle RS, Whitby RM. Vaccine-associated paralytic poliomyelitis. Med J Aust 1995; 163 : 423-424. ©Copyright 1995 The Medical Journal of Australia - reproduced with permission.
 

 
While we are on the subject of immunisation, Vice President Janet Malone represented the Network at the launch of the National Childhood Immunisation Program by the Hon Dr Carmen Lawrence MP, Minister for Human Services and Health, which was held on 16 October 1995 at Ward Park, Surrey Hills, Sydney. What follows are excerpts from Dr Lawrence's speech.
 
LAUNCH OF THE NATIONAL CHILDHOOD IMMUNISATION PROGRAM
I'd like to thank you all for coming today to help celebrate our efforts to promote and ensure healthy Australian families. But I also want to send out a warning.
There's no denying that today most Australian children aren't dying at the rates they were even twenty years ago. Since 1983 Australia's infant mortality rate has declined from 9.6 to 6.1 per thousand live births. The reduction in the number of children dying from Sudden Infant Death Syndrome has been a major reason for our improvement in infant mortality.
But unfortunately not all children are as happy and healthy as they could be. Too many Australian children still contract common childhood diseases which can make them ill, leave them severely impaired or even kill them. Australia has had recent epidemics of pertussis and measles. In 1993 my Department was notified of 3,993 children who contracted pertussis. Last year that jumped to 5,689. In 1993 we were notified of 3,776 children who contracted measles. Last year 4,253.
The tragedy is that almost all of these cases of disease could have been prevented. Diseases like whooping cough, measles, diphtheria, mumps, rubella, polio and tetanus can all be prevented by vaccines.
I know that many of my parent's and grandparent's generations knew how important it was to routinely immunise their children. That's because many of them saw the effects of these childhood diseases before effective vaccines were discovered. It wasn't a pretty picture - a young child choking with diphtheria as her lungs filled with fluid, babies turning blue and gasping for breath with whooping cough, others crippled for life with polio. But this was also the generation that witnessed the discovery of the polio vaccine - the generation who saw how their children could be saved from such a crippling disease. For them immunisation became a normal and necessary part of bringing up a child. And a normal part of doctors' care for their young patients.
But today along with our busy lives and this lack of knowledge about the potential dangers of these diseases has come an alarming decline in immunisation. Some parents are also fearful of the potential side-effects of vaccines. But scientific research continues to confirm that the side-effects of the vaccines don't come close to the hazards of getting the diseases themselves.
Since the development of the polio vaccine our armament of vaccines has been increasing and improving. Most recently the development of a Hib vaccine has meant babies today can be spared the risk of contracting one more type of life-threatening meningitis.
Childhood immunisation may not only prevent your own child from getting infected, it can also prevent the children of other families being infected. Because if enough people in the community are immunised from most childhood diseases, the infection can no longer be spread from person to person, and the disease may die out altogether. This is how the world has effectively eradicated smallpox and how polio has been eliminated from many countries.
But despite the immunisation successes we've had in the past we can't afford to be complacent about immunisation today. If we are complacent the results will be disastrous. There are already enough signs to suggest we must do better.
We owe it to our children to stop the decline in Australia's immunisation rates. And that's what the Federal Government is determined to do. That's why the Government has committed $80 million to a National Childhood Immunisation Program to help lift immunisation rates and give Australian children a healthier start to life. That money is being used to buy free vaccines for the most common childhood diseases, and to run extensive education campaigns for parents as well as for providers of vaccines.
We are also establishing an Immunisation Register which is due to begin operating early next year. The Register will enable us to better measure immunisation coverage of Australian children, and will provide parents, if they wish, with an optional immunisation reminder. This will greatly assist us to effectively manage the national immunisation program.
The campaign has been endorsed by the AMA, the Royal Australian College of General Practitioners, the Australian College of Paediatrics, the Royal College of Nursing, the Australian Nursing Federation and the Australian Institute of Environmental Health. There is clearly a professional consensus that we urgently need to promote and ensure our children get immunised.
I sincerely hope that the Government's initiatives convince Australian families that immunisation is one of the most effective ways of protecting our children against disease. Immunisation is perhaps one of the most effective preventative health measures we have. We have a duty to help improve Australia's immunisation rates - Governments, parents, doctors, nurses. The Federal Government is acting now. I urge Australian parents to also act now - it's never too late to catch up on immunisation.
The Network is responding to the Government's call to act to improve Australia's immunisation rates. The Committee has been aware of the alarming decline in the level of immunisation against common childhood diseases and has promoted the need for immunisation wherever possible. With the launch of the Government's campaign, we thought individual Network members could help in a practical way, perhaps by attending meetings of parents at local pre-schools, primary schools or community centres to speak of the importance of polio vaccination. It is for this reason that we have invited a representative from the Department of Human Services and Health to our February 1996 Seminar to show us how we can be involved.
What follows is a thought-provoking article which appeared on the Internet last year.
Changing Your Life By Conserving Energy
Mavis J. Matheson MD
Polio survivors need to learn to conserve energy if they are to control their symptoms of pain, weakness, and fatigue.[1] It takes effort and a change in attitude to learn to use energy conservation to our greatest advantage. Using our energy well can allow us to do more and do it better.[2] This article suggests four principles of energy conservation and three techniques for making the necessary changes in our lives. Many of us don't have the strength and energy that we used to have so it's time we started taking better care of ourselves.
Why Should We Learn to Conserve Energy?
In a study by Peach and Olejnik,[1] recommendations for change included "decreasing overall daily activities, a change in job, work environment modifications, a decrease in work hours, a decrease in social and recreational activities or taking rest breaks. New or additional orthotics were also recommended to effect safer, less painful, and more functional gait patterns. In some patients, a component of disuse weakness was noted. In these cases, appropriate aerobic exercises were recommended, carefully avoiding over-exercising paretic extremities. A number of these patients had become overweight so a weight loss program was recommended."[1] Those who made recommended changes showed either improvement or resolution of symptoms of weakness, fatigue, and muscle and joint pain. Those who didn't make changes found symptoms were either unchanged or increased.
Those with post-polio syndrome who were able to make changes and successfully control the factors responsible for overuse did not lose muscle strength. Polio survivors who didn't make changes knew what they needed to do. Many simply refused to make changes in the behaviours that lead to overuse.
Doing More With Less
Agre and Rodriquez [2] noted that the amount of isometric "work" performed during interval exercise was significantly greater (237% on average) than during constant exercise. (Interval exercise was simply the constant exercise divided into quartiles by 2 minute rest breaks or into 20 second intervals with 2 minute rest breaks.) They also found that those with symptomatic post-polio were able to monitor local muscle fatigue and avoid exhaustion. Symptomatic post-polio subjects also recovered strength significantly less readily than a control group. If we allow ourselves to become overtired it takes us longer to get our strength back. By changing our activities to include rest breaks we may find we can do more with less effort.
Changing Your Attitude
Change is not always easy. In fact many polio survivors find change very frightening. Change requires examining the attitudes and beliefs that keep us from feeling well. We can change the quality of our lives by changing the way we look at our circumstances. Creative people are most successful at doing this over the long term. They see opportunity, where others see insurmountable problems. There is no reason we cannot see ourselves as creative and start making our lives better. Creative people are simply those who see themselves as creative.[3]
The way we see ourselves may interfere with our ability to change. One approach to the whole issue of activity is to be kind, positive, and gentle with ourselves. The person behind the pain and fatigue, the real you, is a capable, worthy, individual and a beautiful human being. It's time to start treating ourselves like the wonderful beings we are. It's time to start taking care of ourselves as if we were precious possessions.
Only you can decide to be sore and tired or relaxed and comfortable. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. You have no control over anyone other than yourself, and only when you are clear about who is responsible for your activity will you have the power to master it. You have the capacity to recognise fatigue and overuse.[2] You must decide how much you will or will not do.
Your mate, your friends, your boss, your doctor, your physiotherapist, and your occupational therapist can only advise you. When you go on Dr X's Program, you may lose the power to choose when, what, and how much you're going to do. It may carry with it the terrifying feeling that you are back in the polio ward again and someone else is in charge of what you do. It also gives you someone else to blame for your weakness and fatigue - Dr X's Program didn't work. You have given your power away to Dr X. Dr X may have some useful suggestions, but only you can decide what works for you.
Four Principles of Conserving Energy
The main principles of conserving energy include (1) doing what you most want to do, (2) planning activities for times when you have most energy, (3) learning what your maximum work is and respecting the signs of fatigue you experience, and (4) stopping before you become exhausted.
  1. Before you begin any activity you should think about whether you really want to do it at all. Don't ask yourself what you should do; ask yourself what you want to do. It is important to be flexible. Let others in the house or office help you with the jobs you find tough. Delegate tasks whenever possible.
  2. Plan your activities for when you have most energy. Most people don't think about doing things if they are tired. Don't waste energy by trying to do more than your body can comfortably do. If you are tired by noon, plan activities for the morning. We take a long time to recover if we allow ourselves to become exhausted.
  3. Learn what you can do without pushing yourself and respect the signs of fatigue (including muscle soreness, tiredness, muscle weakness, change in quality of movement, grimacing, etc.). Work simplification is an important tool to use in reaching our daily and long term goals in life. Work at a comfortable easy pace and avoid tension. A moderate work pace uses the least amount of energy and you will make fewer mistakes. Alternate heavy with light work each day and throughout the week. Break up heavy jobs over several days. Sit for as many jobs as possible. Allow time for interruptions and emergencies. If you find walking difficult, take along a wheelchair or get a scooter and save your energy for more important things. Pay attention to your body's signals. Care enough about yourself to listen to the messages of pain and fatigue.
  4. Plan rest periods during the day and STOP before becoming exhausted. When taking a rest, relax completely with your feet up. Try resting 10-15 minutes between each hour or two of activity. It will probably take some trial and error to determine what is best for you. If you get tired in the middle of the day, have a one hour sleep early in the afternoon.
 
Don't expect the impossible because even with a good plan, there will be setbacks. There are things we can't change and accepting these will help make our lives work better. Sometimes we have to be willing to do a job less thoroughly than usual so we will have the energy to spend on our family or friends. Other times we may choose not to do the job at all!
Three Techniques To Help Us Make Changes
Kohl [4] suggests three techniques that we could use to help ourselves make changes. These are push to avoid pain, blank pad, and plain talk.
The push to avoid pain system acknowledges the amount of energy that we must generate in order to reduce our activity level. It is a statement of action, not of failure or backing down. It means that we are dedicated to taking care of ourselves. Other people, obligations, and commitments will be prioritised according to pain thresholds and those actions that reduce pain. To delegate is action; to use nighttime oxygen or respiratory equipment is an action with enormous consequences; to retain authority in a seated position requires great assertiveness. Taking care of ourselves is not giving in but rather a restatement of control. The pain will not control us, we will control the pain.
The blank pad method of documenting accomplishments during the day reinforces a sense of purpose. Instead of making list after list of things to be done and then crossing off what has been completed, use a blank pad to record all you have done. It is a great training exercise for developing awareness of all the energy expenditure that does occur. It also saves us from devaluing ourselves for that which was not done. The goal is to avoid negative feedback at the end of the day and replace it with positive feedback.
Plain talk was developed in response to people asking how to keep themselves and others from feeling manipulated. If someone does not respect a simple "No" in response to a request, we may have to ask "Why do you want me to be in pain, more tired, overextended, not able to enjoy our time together, etc.?" We need to practice simply worded responses that will increase the other person's awareness of the impact of their requests without creating defensiveness.
Taking Care Of Yourself
You have changed physically. Your old coping strategies don't work anymore. You must decide if you want your weakness and fatigue to progress. You are responsible for what you do. When you are clear about who is responsible for your activity you have the power to master it. You can live better if you adapt to the changes in your body. Energy conservation can help you feel better and do more with less. Only you can make the decision to take control and take care of yourself.
References
  1. Peach PE, Clejnik S. Effect of treatment and non-compliance on post-polio Sequelae. Orthopedics. 1991; 14:1199-1203
  2. Agre JC, Rodriquez AA. Neuro muscular Function in Polio Survivors. Orthopedics. 1991; 14:1343-1347
  3. Zelinski EJ. The Joy of Not Working
  4. Kohl SJ. Emotional Responses to the late effects of Poliomyelitis. In Halstead LS, Weichers DO, eds. Research and Clinical Aspects of the Late Effects of Poliomyelitis. White Plains, NY: March of Dimes Birth Defects Foundation; 1987:135-143
I recently spoke to Research Officer Penny Cooper about the study below. She has now forwarded the following article and hopes that she will be inundated with calls from our members. This is very timely research since many of our members are ageing with polio and its late effects. Please assist Penny and participate if you can - you have a lot to offer.
Growing Older with Your Physical Disability
Research into the Accommodation and Support Needs
An Invitation to Participate
The issue of ageing with a physical disability has long been a matter of concern for people and their families. It raises many questions, most of which relate to what level of support and care is needed as a person becomes less able and what are the accommodation options for them and their families.
ParaQuad NSW has been concerned that the dual consequences of ageing with a physical disability have not been discussed or identified. To respond to this Paraquad has commenced research into the needs of people who are ageing with their physical disability. It is important to know what people want and how their accommodation and care needs can be addressed. ParaQuad is able to undertake this study due to funding grant from the Hostel and Care Program of the Home Care Service of NSW.
Penny Cooper, Research Officer, is keen to hear from people who would like to be involved in a questionnaire or telephone interview.
People over 50 years of age who have a physical disability such as polio are invited to call. If you would like to be involved or find out more about the study, you can contact Penny on (02) 764 4166.
It is hoped that the information we receive from participants will help develop recommendations for future service development and government funding.
Chris Campbell (Manager, Community Services, ParaQuad NSW)
 

I.D.E.A.S. Expo '96, 2 - 4 May 1996, Albury
Jenny Stanzel, Manager of I.D.E.A.S. Inc (Information on Disability - Equipment Access Services Inc), has asked the Network to promote their forthcoming Expo '96. The following is extracted from their media release.
I.D.E.A.S. Inc is a disability information service, situated in Tumut in the Riverina, and the role of I.D.E.A.S. Inc is to provide current information and referral to people with disabilities, aged persons, their carers and people who require information relating to disability and/or ageing. I.D.E.A.S. Inc receives over 4000 enquiries each year from all over Australia. The information we provide may be on services, equipment (suppliers/manufacturers of), travel/access/leisure, employment services, education, accommodation, government Acts of Parliament and Reviews etc.
Every two years I.D.E.A.S. Inc holds an Expo of equipment and services at the Albury Convention and Performing Arts Centre, in Albury. The Expo attracts over 60 exhibitors from South Australia, Victoria, Canberra and New South Wales. This coming Expo will be the fourth and will be held over a three day period from 2nd to 4th May 1996. Approximately 2000 people (consumers, families and professionals) attend from rural and isolated towns of the Riverina/Murray and Upper Victoria and other parts of the state.
Each Expo we have a theme - the theme this time is "Expo '96 - Push for the Bush" (but this is not to say the name won't change!!). The main aim of Expo is to promote community awareness and positive attitudes about disability and ageing. In conjunction with Expo, several workshops and a conference ("Acquired Brain Injury Conference - Model for the Bush") will also be held. The type of workshops being held have been requested by consumers and service providers.
We are inviting you to attend some or all of Expo '96 as we are sure you will enjoy browsing at the Expo, the workshops and/or conference or even just the company!!
If you require further information on the forthcoming Expo, please contact I.D.E.A.S. Inc staff - Kay, Sue, Jenny or Mia - by phone on toll free 1800 029 904, or by fax on (069) 47 3723, and we will forward you brochures, registration forms etc.
Post-Polio Post
Mary Westbrook often sends me useful items for the Newsletter and this issue is no exception. She writes:
 
The enclosed was sent to me by Ed Snapp who runs Futures Unlimited Inc [Ed: in the USA]. (It provides intensive therapy, physio/water etc for people with neuromuscular disorders - some post-polios find the program, which is two weeks and costs about $6000, very helpful - others don't.) Ed spoke at GINI 1994. I thought the comment on respiratory problems might be good for the Newsletter. There's so much coming out about our respiratory problems (e.g. latest GINI newsletter) but there are never any practical suggestions for improving breathing apart from more drastic measures such as ventilators.
This is the item described by Mary.
Respiratory problems are far more common to our PPS patients than we have recognized or acknowledged. Numerous factors are involved. There are some of us who had known involvement with respiration during the period of acute illness and may have some residual weakness. Others appeared to have no weakness then or now as far as the ability to breathe well is concerned, however, due to the age and the limited activity levels of our particular population we have a high percentage of people who have very relaxed abdominal muscles. Many of these and countless others are overweight, increasing the downward pull on the abdominal wall. These factors produce a handicap to the function of the diaphragm due to the weight of the abdominal viscera pulling downward with little or no ability to return the diaphragm to a position of exhalation. Also, because of our relative level of inactivity, we breathe only enough to sustain us. We seldom have sufficient activity to stimulate deep respiration; consequently, we rarely clear the peripheries of our lungs of the concentration of carbon dioxide. Our levels of CO2 in the blood are frequently high even though the oxygen levels may be satisfactory. Without going into further detail, I have found it helpful for our patients to take the time and effort to take about 5-6 very deep breaths followed by maximum exhalation 5-6 times each day. I think this will be helpful to others as well.
Although Mary did not draw my attention to the other item Ed forwarded to her, I thought it too was worth reproducing. It deals with the effects of injury or change on people with PPS.
Like most of you, I have not given much consideration to whatever weakness I had from polio. I did what I wanted to do within my limitations. I had many falls during all those years but recovered from all of them in a reasonable time with no negative side effects. More recently I had a fall that broke one foot and put me on crutches. I have no problem walking on crutches, but I did not pay attention to the change it made in my posture, in my patterns of movement, in my coordination. Like many of you, I have depended on some of my muscles to work near 100% of their capacity and in doing so the muscles maintained their strength. The changes in posture took some of the load off the muscles and the strength decreased. When I tried to regain my posture without the crutches I was unable to maintain either range of motion or balance due to both a loss of coordination and weakness from limiting use of the muscle. It has taken a long time to recover, but the abilities are gradually returning. It is obvious from observing other patients and my own problems, that a change of function, whether it is a different pattern of movement or a change in intensity of effort may lead to a decline in function and may have to be addressed very carefully and specifically to regain your ability. It cannot be accomplished by either rest or hard work, but through brief, coordinated non-fatiguing exercise recovery may be attained.
The Committee was very pleased to receive the following letter from
Professor John Eisman who gave an extremely interesting presentation about osteoporosis to a very well-attended Seminar last November. Nola has promised to write up his talk for the next issue of the Newsletter.
27 November 1995
Dear Nola
I would like to say how much I enjoyed talking with you and your colleagues at the Northcott Centre last weekend. There is clearly a great deal of interest amongst all the participants. I hope that I was able to give some useful insights into this complex problem.
Best regards
Yours sincerely
John Eisman
Country member Yvonne Stone likes to keep in touch by letter and recently wrote the following to me.
Dear Gillian
Have been intending to write to you ever since I saw you and your beautiful wheelchair on TV.
And again when I read the awful experience of the little polio. Made me realise how very very lucky I was. Once I could cope with missing my husband, 3 year old son and new baby daughter, and settled down to recovering, I had a happy two years in hospital. Only once I had words with a nurse who dropped my leg out of bed and yelled at me for letting it fall! The Physios, Sisters, Nurses and staff were all marvellous. I still write to 2 nurses and the only other adult polio. We were right at the end of the epidemic in Hobart.
On Friday I was delighted to meet Jan Killelea and other polios at a lunch Jan organised for us in Port Macquarie. It is great to meet others who understand and don't whinge about their "lot".
The Occupational Therapist from Wauchope Hospital brought out a member of the TAD Client Service Department, who lives in Port Macquarie. No doubt you know they are retired engineers who love to solve problems and charge only for materials used and kms travelled. Bill has made a pulley hoist so I can get my legs into bed and now is repairing my bath hoist.
Wish I could come to your "do's" but distance and what we are now - physically limited, impaired or deprived - prohibit.
I do enjoy your newsletter.
Sincerely
Yvonne Stone
 
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