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POST - POLIO NETWORK (NSW) INC.
N E W S L E T T E R #46
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
You will find the Network's 1999/2000 Annual Report
enclosed. This is your last reminder that our Annual General Meeting and
Seminar will be held on Saturday 4 November at the Independent
Living Centre, 600 Victoria Road, Ryde, commencing at 11:00 am. Parking
is available on the premises. It would be appreciated if those who are more mobile
could leave the closer parking for members who are only able to walk or wheel
short distances. The AGM is your chance to have a say in the running of the Network
- please be there if you can.
Before you come along on 4 November, please check your address
label to see whether you are financial. If your label reads “Renewal Due
on 30 June 2000” we have not yet received your membership renewal. Please
bring your renewal form and pay at the AGM.
There will be a break for lunch between the AGM and the
Seminar, so if you find it hard to sit in one place for too long you will have
ample opportunity to get your muscles and joints moving. Please bring your own
lunch - tea, coffee and juice will be provided. The Seminar will commence at
1:00 pm and be presented by the occupational therapists who staff the Independent
Living Centre. They will demonstrate a wide range of devices and aids
that can make our lives easier, safer and more pleasant. Areas covered will include
kitchens, bathrooms, scooters, wheelchairs, cars, dressing, and aids for weak
hands. You will be able to view recently released equipment and learn about the
range of what is available. There will be plenty of time to ask questions.
Vice President, Merle Thompson, and I will also be launching
the Network's latest publication Hospital, Medical and Dental Care for the
Post-Polio Patient – A Handy Reference. All members will receive
a free copy of the reference guide - come along to the AGM and receive yours at
the launch.
Post-Polio Awareness Week is
just around the corner, 1 - 7 November. A colourful poster which promotes
the Network and raises community awareness of the late effects of polio is included
with this Newsletter. We need your help to distribute the poster and would
greatly appreciate you (or a friend) putting it up somewhere in your local community
such as a pharmacy, doctor's waiting room, clinic, notice board, library or community
health centre etc. If you are able to distribute extra posters, please ring Alice
on (02) 9747 4694. There are still so many people who have never heard of the
late effects of polio or the Network – as they age it is more important to
contact them.
The last Newsletter for the year will be sent out in December.
The Seminar dates for 2001 will be advised in that issue, together with details
of the new Management Committee elected at the AGM.
The Committee and I are looking forward to catching up with
friends and meeting new members at the AGM. Don't forget to bring a plate for
afternoon tea to help celebrate Christmas early.
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.
Dr Henry Writes …
Henry Holland MD, is a polio survivor, a board certified psychiatrist and an
associate clinical professor of psychiatry at the Medical College of Virginia
who has led the Central Virginia (Richmond) PPS (Post-Polio Syndrome) Support
Group for the past six years.
A series of Dr Holland's articles appears on the Internet
on the Lincolnshire Post-Polio Network's Web site www.ott.zynet.co.uk/polio/lincolnshire/
under the title “Dr Henry Writes ...”. Dr Holland has generously given
us permission to reproduce his articles in our Newsletter. Dr Holland's permission
must be sought to reprint any items published in this series; he can be contacted
by email at Henry4FDR@aol.com.
The following article was originally published in the
Central Virginia (Richmond) PPS (Post-Polio Syndrome) Support Group's newsletter
The Deja View in the June/July 2000 issue. In order
to make the article relevant to Australian readers, it has been minimally edited
to delete references to American support services which are not available in Australia.
Henry's Helpful Hints for Living
with Post-Polio Syndrome
Henry Holland MD
Richmond, Virginia, USA
June 2000
When I was three years old, my mother became a victim of
schizophrenia. She never recovered. When I was eleven years old, I had paralytic
polio. I partially recovered. These two life events were major factors in guiding
my life toward a career as a physician and a psychiatrist. For at least the last
decade, I have struggled with Post-Polio Syndrome (PPS). Most of you are quite
familiar with all of the manifestations of that struggle. For almost six years,
I have had the privilege of being the president of the Central Virginia Post-Polio
Support Group, a marvelous group. As a result, I have had the pleasure and
challenge to communicate with hundreds of PPSers around the world. I think I have
learned a lot about PPS and the people who are living with this life changing
disorder. In this article, I will attempt to share what I am calling Helpful
Hints for Living with Post-Polio Syndrome. Many of these hints are similar
to what is now called “mind – body” medicine. Many of them are
replicated in other lists and articles. I offer these hints for your review, reflection,
and response. This list represents only my opinion and is not to be interpreted
as anything more than that.
Sleep Adequate, restful
sleep is a major asset in living with PPS. Successfully living with PPS usually
requires more sleep than before the onset of PPS. The amount of sleep may range
from 8 to 12 hours. This may be all night-time sleep or could be a combination
of night-time sleep plus an afternoon nap. Many symptoms of PPS can interrupt
the attainment of this level of sleep. Problems with pain, hypoventilation due
to weakened respiratory muscles, sleep apnea, anxiety, panic attacks, and depression
are common sleep disturbers. Any of these disturbers need to be evaluated and
treated before sleep hygiene can be improved.
Pain Pain and PPS are
like partners of misery. Every effort should be made to eliminate or reduce pain
without resorting to narcotic analgesics. A variety of pain management approaches
may be tried. This might include over the counter preparations such as Tylenol,
Ibuprofen, aspirin, and other non-steroidal anti-inflammatory medications. Non
habit forming prescription medications may help pain and sleep problems. Low doses
of the tricyclic antidepressants and/or the selective serotonin re-uptake inhibitors
may help to reduce the daily pain level and improve sleep. If one has made a genuine
effort at managing pain by reduced activity, more rest, and the use of assistive
devices, then the use of narcotic analgesics would be more appropriate. Other
pain management approaches might include moist heat as obtained in a heated pool,
gentle massage, magnet applications, and even acupuncture. Heated pools should
not exceed 92o F. Massage should not be aggressive, and a trained professional
should administer acupuncture.
Fatigue Fatigue is probably the single most commonly shared symptom of
PPS. Fatigue contributes to greater pain and sleep disturbance. I believe that
intermittent down time is the most effective method of managing fatigue. Down
time means lying down prone or supine. Each person has to discover what is the
best balance between down time and up time for each day. For example, spending
an hour reclined every four hours works well for many PPSers. Medications to reduce
fatigue have proven to be of minimal effectiveness in double blind studies. Also
many PPSers do not tolerate medications well and have numerous side effects.
Respect new weakness If
new weakness is detected or experienced, respect this reality and do not try to
restore strength by an exercise program. Exercising with this goal in mind will
likely lead to more pain and a progression of the weakness. Most of us get enough
exercise just trying to maintain the activities of daily living and trying to
remain independent. Be sure that any physician or physical therapist who recommends
exercise is fully knowledgeable about PPS.
Blood pressure Maintaining
normal blood pressure is most important for PPSers. Many of us experience elevated
systolic blood pressure (the upper number on a blood pressure reading) after exerting
some physical effort. Our heart rates may also increase during times of fatigue
and minimal physical effort. If this elevation of blood pressure persists, the
risk for heart attack, heart failure, and stroke increase. There are many effective
medications to control blood pressure. However, beta-blockers sometimes cause
side effects for PPSers. The systolic pressure should be below 140 at rest and
our pulse rate should be below 100 at rest.
Brain power Utilize
your brain or intellect to compensate for the increased physical limitations of
PPS. This is a process that most polio survivors have been doing for years. PPS
calls for an enhancement of this same process. Read more. Read some of the classics.
Audio books are a wonderful way to read without tiring your brain or eyes. I would
also recommend the many benefits of owning a computer. For PPSers, the investment
required to purchase a computer is usually a rewarding undertaking. You are never
too old to enjoy and learn from a computer, which literally makes the world available
to you.
Doctors and therapists Find
doctors and other therapists who not only know about PPS, but are interested in
learning more and will listen to you. However, be cautious if a doctor tends to
blame all your symptoms on PPS because we are in an age group, which is vulnerable
to many other medical/surgical problems. Your doctor should rule out other causes
of symptoms that simulate PPS symptoms. Your doctor should not hesitate to refer
you to an appropriate specialist if any symptoms are not explained.
Herbal medicine Americans
now live an average of about thirty years longer than our ancestors of one hundred
years ago. This is largely due to antibiotics, better diagnostic and treatment
techniques, improved nutrition and more prevention via vaccines. Because we have
it so good, we want it even better. Thus, the herbal, vitamin, and nutrient alternative
medicine business is booming. Keep in mind that the Federal Drug Administration
does not have the resources to monitor these alternative products as it does prescription
medications. Whether it be St John's Wort, Ginkgo Biloba, L-carnitine, Feverfew,
the various vitamins, or shark liver oil, be sure that your physician knows what
you are taking and remember that with many of these products, cheaper does not
always mean purity of the product. If an alternative medicine seems to be helping
you, continue it. Nobody has found a consistently effective pharmaceutical treatment
for PPS.
Talk to someone Talk
to someone who cares about your feelings in living with PPS. This person might
be your spouse, a family member, friend, or even a professional therapist. Our
support group is a healthy and welcome forum for talking about your feelings.
Many polio survivors have spent a lifetime of containing their feelings of loss
and even anger. To express these feelings to someone is very difficult, but the
benefit is immense.
Spiritual base Having
a faith or spiritual base that transcends the daily activities and struggles of
this life can be an additional source of personal and inward strength. This pilgrimage
is a personal choice, but I believe provides a greater meaning to our time in
the midst of the ages.
Nutrition Enjoying good food is still one of the pleasures of life
that most of us still can do. That is the up side. The down side is that we more
easily gain weight, as we are more sedentary living with PPS. The practical advice
is to avoid big meals, especially at the end of the day. Eat balanced meals with
some emphasis on protein content. Maintain good hydration. Good hydration assists
renal and pulmonary function.
Keep your feet up When
sitting, keep your feet elevated whenever possible. Another advantage of taking
intermittent down time throughout the day is the benefit of preventing or at least
reducing dependent edema. Weakened leg muscles, along with reduced motor activity,
contributes to dependent edema. Chronic dependent edema can lead to possible leg
ulcers, deep vein clots, and phlebitis. Complications of these conditions can
result in life threatening pulmonary emboli. Wearing support hose can also help
prevent dependent edema.
Don't ignore headaches Headaches are a common
sign of PPS fatigue. Have your doctor rule out other causes of headache such as
hypertension, tension vascular headache, or some other medical problem. A dull
daily headache is often a sign of PPS fatigue and particularly brain fatigue.
Brain fatigue is often marked by word finding difficulties, mental focusing, and
concentration problems. These brain fatigue symptoms are usually reversible with
rest. Rest and more rest is the best treatment for the dull headache of fatigue.
Pace Approach pacing
like you would an algebraic equation. The daily physiological energy expended
must equal the physiological energy stored and not exceed it. Most of us are accustomed
to expending more energy than we store or acquire. If you know that a particular
day's activity will result in more energy expended, plan to spend more than one
day to restore and recover that energy. Balancing this energy equation over time
results in successful pacing. Pacing reaps results, but not in a few days. One
should practice pacing for months and years.
Breathe well Healthy
breathing and good sleep hygiene are coupled together as I mentioned in the first
tip. Sometimes, the muscles of breathing grow weaker with the progression of PPS.
Thus, there could be an insidious onset of chronic hypoventilation, which could
contribute to an overall feeling of fatigue. Also scoliosis, resulting from polio
may advance with the progression of PPS and aging. This process could restrict
the ventilatory capacity of the lungs and lead to hypoventilation. Measurements
of pulmonary function and arterial blood gases can help to diagnose hypoventilation.
Most PPSers with these problems do not usually need added oxygen, but simply improved
ventilation, often only at night. Depending on the degree of hypoventilation,
this condition can often be treated with a C-pap, bipap, or ventilator without
the necessity of added oxygen. Actually, adding oxygen without improving ventilation
can increase the risk of carbon dioxide retention in many PPSers with scoliosis
or weakened respiratory muscles. Untreated chronic hypoventilation can lead to
respiratory failure and ultimately death.
Extend recovery from any stress Expect to
take three to four times longer to recover from an infection, minor or major surgery,
an injury, accident, or emotional upheaval. For whatever the reason, the physiological
restorative processes of the body and brain are delayed by PPS. When any of these
stresses occur, plan on taking longer to recover.
Use your sense of humor Many survivors of
polio seem to possess a witty sense of humor and an upbeat approach to life. A
sense of humor is a good way to remain innovative, creative, and positive. Keep
using this attribute.
Sex and intimacy Sexual
stimulation is good for the cardiovascular system. Be creative with this stimulation.
The polio virus did not damage the sensory portion of the nervous system. Feelings,
both physical and emotional, are still potentially available for expression and
perception. Linda Van Aken and I wrote an article about PPS and intimacy about
a year ago. That article attempts to address this issue.
[Ed. Readers with Internet access can find Dr Henry's
article PPS and Intimacy at www.ott.zynet.co.uk/polio/lincolnshire/library/drhenry/intimacy.html]
Be more dependent Not
only should you allow others to help, but also you should tell them how to help
you. If your spouse is your main helpmate, be cognizant that he/she also gets
tired. If you ask your spouse or anyone else to fetch or fix things for you, be
organized about your requests and minimize their physical effort and time consumed.
Simply keeping a list of your needs or requests can help conserve your spouse
or helper's energy and reduce the development of interpersonal tension. It is
very difficult for PPSers to relinquish some controls, but in doing so, avoid
trying to control your spouse or helper. Communicate what you want or need, but
be courteous and grateful in the process.
Roll more, walk less When
walking becomes more difficult because of new weakness or fatigue, get some wheels
and roll more. If you can still walk some and rise unassisted from a chair, a
scooter might be advisable. A battery-powered scooter allows you greater and safer
mobility. Scooters are great for malls, touring your neighborhood, and even in
parks. If your weakness is profound, an electric wheelchair is probably what you
need. Once you learn the value of electric mobility, you may want to invest in
a van and a lift to be able to take your wheels wherever you go.
Use assistive devices Many
of us have found it necessary to acquire new braces, canes, and crutches in order
to keep walking and maintain balance. Accepting this need may be a step back in
time for some. Don't resist this help. By all means, do anything to prevent falls.
Do what is wise and necessary. Install grab bars, elevate the toilet seat, use
pick sticks, and install ramps. I think it is wise to carry a cellular phone on
your person (or wheelchair or scooter) at all times. Use your brain to help yourself.
Only you know what you need and what may help.
Never, ever give up During
the struggle with acute polio and its aftermath, many of us were told, “no
pain, no gain”. We were encouraged to overcome adversity and that it was
all up to us. With PPS, we know that attempting gain will bring more pain and
no real gain in the process. However, we still need to retain our persevering
and hopeful approach to life. Giving up will serve no positive purpose and is
a sign of depression. We should press on, but pace the race. We should be more
like the turtle than the hare.
To be added when a new hint
comes from you.
50 Year Polio Reunion
The Reunion held on 27 June was a resounding success, with
76 people in attendance, including eight nurses who nursed polio patients in the
1940s and 1950s and a large number of ex patients and their families. The Reunion
Organising Committee put a lot of effort into making it an event to remember
and the Network was grateful to later receive a donation of $110 to help our work.
Sydney 2000 Olympic Torch Relay
By all accounts the Network members who carried the Olympic
Torch acquitted themselves very well. If you have Internet access you can look
at photos of their memorable part of the Torch Relay. Simply go to www.newsphotos.com.au
and enter the runner's number, as given below, in the Search Box. The runners
we know of were Bill Bradley (98-142), Margaret Greig (89-006), George Quinell
(88-028) and Gillian Thomas (99-129).
Farewell Zuga
Members who regularly come along to Network Seminars will
be very familiar with Zuga, Allan Quirk's highly trained assistance dog, a Rhodesian
ridgeback/mastiff cross. We are sad to report that Zuga had to be euthanased recently
following a short illness. We will all miss the gentle giant but none more so
than Allan who has lost his faithful friend of 10 years. Zuga was Allan's constant
companion helping him in a myriad ways by responding to dozens of commands, from
picking up items ranging from crutches to a dropped credit card, to carrying things
from room to room, holding doors open, helping Allan get out of his car, and much
more. Rest well, Zuga.
Post-Polio Syndrome Is Debated in Federal
Parliament
Followers of proceedings in Federal Parliament may have heard of the following
motion in the House of Representatives on 28 August 2000, and the ensuing debate.
The Tasmanian Network put in the hard work to have their patron Dick Adams, Member
for Lyons, put the motion as “Private Members Business” and start the
debate. We owe the Tasmanians a debt of gratitude for this exposure.
What follows is a complete transcript, from Hansard, of
the speeches made on 28 August. You will see that the motion was debated on non-partisan
lines, and also that Barry Wakelin, Member For Grey, gave our Network and its
activities quite a plug in his speech (see pages 8-9). Regrettably, we were not
contacted directly for our input (leading to, for example, the incorrect dates
being given for our annual Post-Polio Awareness Week). On the positive side, our
Internet website was used to gather information about the Network and, in particular,
a document we put on the site in 1999 called “Ten Years of Achievement”
was extensively quoted from.
Please see “Where To From Here” on page 11
to see how you can help to keep post-polio on the political (and therefore funding)
agenda.
The Hon Dick Adams MP (ALP, Member for Lyons - Tas)
I move that this House:
- recognises Post Polio Syndrome, as thousands of Australians
are now experiencing the late effects of contracting polio some 30 to 40 years
after the initial infection;
- notes that it is estimated that a minimum of 20 000 to 40
000 people had paralytic polio in Australia between the 1930's and the 1960's
and it has only been recently that this syndrome has been diagnosed;
- gives support to the Post Polio Network set up around Australia;
- helps the establishment of assessment clinics for those
that suffer from this disorder;
- helps educate medical professionals to recognise this syndrome
and encourage further research; and
- legislates to recognise the need for post polio sufferers
to retire early because of chronic ill health due to past polio infection.
Post polio syndrome is something that many Tasmanians are
only too aware of, yet many who know nothing about it poo-poo it as not being
a recognisable illness. I can remember the alarm that many parents had when I
was young when polio was running rampant. It was very frightening, and most could
only watch helplessly as their loved ones, mostly the young, tried to overcome
their crippling disease. Now we know that it has an after effect. Post polio syndrome
is a physical disorder with psychological implications. The possibility of having
to return to crutches, braces or wheelchairs is once again disturbing and conjures
up memories of metal and leather, iron lungs and Kenny hot packs. The symptoms
include muscle weakness, joint pain, fatigue, muscle pain or sleep and breathing
problems.
The development of this syndrome appears to be time related,
occurring between 25 to 40 years after recovery from the initial bout of infection.
Many polio survivors, particularly those stricken in the mid-fifties, have not
yet begun to experience the painful and often disabling symptoms reported by some
other survivors. It is thought by many experts that post polio syndrome may be
the result of chronic overuse of polio weakened muscles and joints. Those who
went through rehabilitation at the time of their infection and were able to live
relatively normal lives after infection did not realise that there was more to
come. It is thought that this has now taken its toll and the resulting muscle
weakness, muscle and joint pain and severe fatigue have been described as similar
to the symptoms of polio.
Although this disease has been acknowledged in the USA for
20 years and in Australia for about 10 years, it is relatively unknown in Tasmania.
Yet there are thousands of Tasmanians who suffered from some form of poliomyelitis
back then but who did not contract the paralytic form of the virus and so often
they went unreported. It is thought that for every person diagnosed there were
nine who were not; this is a frightening number that will come home to us.
There are many sad stories because of this, and I have a
couple. One farmer was seen to become lazy. He could no longer work as he had
in the past. No-one understood what was happening to him, which had disastrous
consequences for him and his family. Another man, who died two years ago, had
all the symptoms that are now recognised as PPS but not one of the specialists
who treated him connected the symptoms with the condition. A correct diagnosis
really helps greater understanding. These stories and many others have led to
sufferers and their families and supporters setting up an organisation to help
themselves as well as trying to educate the health professionals. So when the
Post Polio Network in Tasmania contacted me for their initial meeting some time
ago, I was only too pleased to go along and assist at that meeting and become
their patron. I was amazed that so little was understood about this disease with
its latent implications now, and there is a need for education of the community
and for people to come to a bigger understanding of what it really means to have
this disease.
I feel it is important that all members of this House understand
what it means. It really does mean that it is so important to recognise the disease
as one that is causing an enormous strain on those who suffered from polio in
the past and that it is now re-occurring just as maliciously as it did before.
It means that people's normal lifestyle is not possible, and there should be a
recognition through legislation that some people can no longer continue to work,
particularly if that work involves a high degree of activity and/or stress. This
really must be recognised. It should be recognised within our social security
act and within our retirement legislation; it should be seen for the devil that
it really is.
The three major steps that need to be taken are for assessment
clinics to be set up around the nation, education packages to be developed for
our medical fraternity in order for this syndrome to be properly diagnosed and
ongoing research undertaken and, of course, this parliament needs to recognise
that post polio syndrome is not some new-fangled social disease - it is very real
and has its roots during most of our lifetimes. Along with this is the need to
ensure that the Post Polio Network is resourced properly, to allow information
to get out to those who were sufferers of polio and who may well be again. These
people cannot afford to be complacent about it, nor can their families. Even if
they have no symptoms now, their local medical practitioners should be aware that
it is in their medical history and that it may be behind some of the symptoms
of other medical problems. This can only be done if there is adequate information
out in the community. For instance, it was interesting to note that some chronic
fatigue syndrome patients are apparently showing up in areas where polio was diagnosed
those many years ago. Some believe there may be a link, particularly if these
people had been infected in some way or another with polio. I go back to those
earlier figures: only one in 10 people were diagnosed with polio back in the early
1950s and the earlier times when the polio outbreaks occurred.
It is important to take action to ensure that both the community
and the medical profession are wise to these facts so that they can make more
informed judgments when trying to deal with these sorts of symptoms. Let us make
sure this malaise does not become such a horror again. At least by being prepared
for this syndrome appearing people will not have to suffer without the proper
treatment. I would ask that the House support this motion. I thank the other speakers
for taking the time to speak to my motion; it is very much appreciated. I intend
to continue to follow up the implementation of the ideas put forward today and
will continue, I am sure along with many others in the House, to endeavour to
bring some of those issues forward to the public and the parliament about the
changes that are definitely needed.
Mr DEPUTY SPEAKER (Mr Jenkins) - Is the motion seconded?
Ms O'Byrne - I second the motion and reserve my right
to speak
Mr Barry Wakelin MP (LP, Member for Grey - SA)
I thank the member for Lyons for bringing this motion to
the attention of the House today and I am pleased to rise to acknowledge the great
effort going on out there to address post polio syndrome, a syndrome, I would
suggest, that is not greatly known to the general community. I am sure that poliomyelitis
is well known to many Australians. It was known in Australia as early as 1895
and today, of course, Australia is able to claim that we are free of polio. The
last reported case of wild polio virus was reported in 1972.
I remind the House and the general community that poliomyelitis,
also known as infantile paralysis, is a neuromuscular disease. There are three
types of polio virus. The infection occurs by faecal oral contamination and the
virus replicates in the gastrointestinal tract and is carried in the blood throughout
the body. In one to two per cent of the infections, the polio virus invades the
nerve cells of the spinal chord and, when it does, muscles connected to the damaged
or destroyed nerve cells can no longer properly function, resulting in weakness
or paralysis of limbs, as well as the muscles controlling speech, swallowing and
breathing. It is a very significant syndrome and, as I said earlier, I am sure
many Australians are very aware of it.
I know of two specific cases. My first headmaster was very much affected by it,
and I admired the way that he dealt with it as a primary school student. I had
mentioned to me that a great friend of my wife - she was a young lady at the time
- spent two years in bed with this disease. A great outing for her was to go to
the picture theatre in her bed - the patient and the bed were brought to the picture
theatre for a great outing. They are a couple of memories that I have and which
I bring to the attention of the House.
The post polio syndrome virus lives on in survivors. According
to the World Health Organisation it is three years since the last case of community
spread polio appeared in the western Pacific. It estimated that between 25 per
cent and 65 per cent who have had polio have developed new symptoms many years
after the initial infection. As the previous speaker, the member for Lyons, mentioned,
the symptoms fall into the three categories: lack of strength and endurance, painful
muscles and joints and breathing, swallowing and speaking problems. It is very
similar in many ways to infantile paralysis or poliomyelitis.
I would like to focus my comments today on the effort of
the support group. I will conclude by talking about a particular example of an
individual who has had to deal with this particular issue.
The Post Polio Support Group of South Australia Inc formed
in response to the growing awareness of a number of people in the community who
have had polio and are now experiencing new problems. They provide a number of
services such as mutual support at regional group meetings - individual support
from people with similar problems - counselling by trained counsellors, regular
newsletters and access to a wide range of relevant information. They can be found
at the Neurological Resource Centre on King William Road, Unley, in South Australia.
I also want to acknowledge the work of the Post Polio Network
of New South Wales. I note the earlier comments from the member for Lyons about
the need to contact the health professionals. I understand that they have information
kits on the late effects of polio, having been provided by them to over 5,000
polio survivors and 2,000 health professionals. They have quarterly seminars and
in 1998 they started holding these seminars in country regions.
Forty issues of their highly acclaimed Newsletter have been
produced. An international conference Living with the Late Effects of Polio
was held in November 1996. Communication channels have been well established with
area health rehabilitation centres and divisions of general practice as well as
with relevant community organisations and state and federal government departments.
There has been frequent and ongoing publicity about polio and its late effects
on national and local radio, television and in the print media. The Post Polio
Network of New South Wales also participated in the establishment of the post
polio clinic at Prince Henry Hospital and they support research into the late
effects of polio. They have established the Polio Awareness Week which, I understand,
was from 7 to 12 August this year, on the health calendar. So far they have promoted
the positive achievements of polio survivors and the ongoing need for immunisation
and the lifelong challenges faced by polio survivors. They have a comprehensive
immunisation information kit, which I touched on earlier. It has been developed
as a resource to help members speak to this important subject with knowledge and
credibility.
A nominated Network member has recently been appointed to
the Minister for Health and Family Services as a consumer representative on the
National Immunisation Advisory Committee. A medical alert card and hospital admission
fact sheet have been developed for members. Their own Internet site has been in
operation for over three years - perhaps a little longer. A post polio library
of books, journals, audio and videotapes has been established. Regional support
groups exist throughout the state of New South Wales and there is a support group
development program. An office is currently being established to further raise
their profile and make information and support more readily available. That is
the work that is being done in one state of the Commonwealth and I am sure it
is being replicated throughout many other states throughout the Commonwealth.
Mr Wakelin went on to quote from a 1998 Canberra Times article which reported
on the Network's first country Seminar and told the polio story of Network member
and ACT Support Group Co-Convenor, Roger Smith.
In terms of describing individual circumstances, I will refer to a piece from
the Canberra Times by Liz Armitage of 1 September 1998. It goes back a
little while but it relates to my own experience and shows how it can have a very
significant impact. It states:
Roger Smith had just turned 18 and his greatest ambition
was to have a career on the land when his life was touched by polio.
The young shearer fell ill with a fever and lost the
use of his legs. His shearing mates at Parkwood brought him across flooded waterways
to the old Canberra Community Hospital. He spent a year in the hospital's isolation
ward.
There was a lot of polio around in 1950. It was contagious
and sometimes deadly. Now immunisation has eradicated the disease in Australia
and the World Health Organisation has pledged to eradicate it from the Third World
countries by 2001.
Mr Smith achieved his dream with the help of two walking
sticks. For the past 20 years, has been running a 105 hectare farm at Pialligo.
But about five years ago Mr Smith first noticed the symptoms of post-polio syndrome.
His left leg began to deteriorate. Now aged 65, he is confined to a walking frame
and a wheelchair.
Post-polio syndrome affects about 25 per cent of those
who have had the disease, according to Dr Pesi Katrak, a rehabilitation specialist
at Prince Henry Hospital, Sydney. He told a polio conference in Canberra last
week that the general opinion was that the syndrome did not affect people who
had completely recovered from the virus. Not many general practitioners knew about
post-polio syndrome and patients often complained about doctors failing to take
note of symptoms. Conditions such as anemia, depression and weight gain had first
to be ruled out in the diagnosis. There is no cure but the syndrome can be managed
with rest, weight control and gentle exercise.
The ACT certainly have their own post polio support group.
I cite that experience of one young man of ambition who contracted polio and then
the polio came back again some 35 or 40 years later, to emphasise the point of
this motion.
In conclusion, this syndrome, like with so many other things,
needs to be brought to some prominence to gain greater appreciation. There are
many situations like the one I referred to, and I am indebted to the member for
Lyons for bringing this matter to the House today.
Ms Michelle O'Byrne MP (ALP, Member for Bass - Tas)
I am most pleased to support my colleague the honourable
member for Lyons in this motion, and I acknowledge the comments by the member
for Grey, who obviously has a very strong interest in this area as well.
The impact that polio has upon those who suffer from it
are well known. Alan Marshall and US President Franklin Delano Roosevelt were
two very well-known sufferers of this disease, which many people would like to
believe is a thing of the past. A less well-known sufferer was my aunt. Since
the introduction of the Salk vaccine in 1955, there has been an incredible reduction
in the number of people contracting this very painful and debilitating disease.
But what is much lesser known is the impact that polio continues to have upon
those who were sufferers much earlier in life. In their article, Post-Polio
Syndrome: Pathophysiology and Clinical Management, Carrington Gawne and Halstead
define the syndrome as:
... a progressive neuro muscular syndrome characterised
by symptoms of weakness, fatigue, pain in muscle and joints and breathing and
swallowing difficulties ... this may be due to motor unity dysfunction manifested
by deterioration of the peripheral axons and neuro muscular junction, probably
as a result of overwork.
The Mayo Clinic and Foundation for Medical Education and
Research identified the main symptoms of the syndrome as: a past history of polio,
usually at age 10 years or older and usually with severe symptoms; a long interval
of some 30 years before the late manifestations; gradual onset of weakness over
a period of months or longer that may involve muscles not involved with the original
illness; weakness or tired muscles later in the day or after mild exercise; and
onset usually not before age 30 to 40. Evidence suggests that some 70 per cent
of people who suffered from polio 20 or 30 years ago are noting or will note the
effects of this syndrome.
The motion proposed by the honourable member for Lyons primarily
seeks to achieve two things: firstly, appropriate recognition for the sufferers
of post polio syndrome and the impact which it has upon their lives, and secondly,
an appropriate response from the House with regard to education for medical professionals,
the establishment of assessment clinics, and the need for early retirement for
many sufferers.
Between 20,000 and 40,000 people are estimated to have suffered
from paralytic polio between the 1930s and 1960, so the actions of the House today
have the potential to affect up to 28,000 Australians who have suffered from polio
in the past and may now suffer from post polio syndrome. Many of them remain undiagnosed.
Cases of this syndrome have been detected since 1875 by French medical professionals;
however, it has only been since the 1980s that the condition has been widely recognised.
According to a number of studies, the most common new symptoms for people with
a history of paralytic polio are fatigue and joint pain, and these symptoms can
easily be misinterpreted and the quality and accuracy of medical treatments can
therefore be reduced.
As appropriate medical recognition of post polio syndrome
is a relatively new occurrence, the importance of a high level of recognition
and the ability of medical practitioners to effectively treat the syndrome cannot
be understated. While it is clearly inappropriate for the House to direct or encourage
the direction of medical practitioners in the manner of treatment of their patients,
the House and, consequently, the government, can rightly play a role in facilitating
the education of doctors. This is an important feature of the motion proposed
by my colleague and one which I believe all members should support. Specialised
assessment clinics would also greatly benefit sufferers.
The symptoms which these Australians are suffering can have
a most severe impact on their lives. With an average of 35 years between the onset
of the initial episode of polio and the onset of symptoms relating to post polio
syndrome, many sufferers are feeling the impact later in life and, indeed, at
a time closer to retirement. But close to retirement age, we must always remember,
is not retirement age, and we should be aware of treating this illness as a normal
condition of aging and writing it off as a priority. Instead, we need to recognise
that early retirement by sufferers is not a lifestyle choice - they do not do
it because they just want to go home - but a health obligation. There is a clear
need for appropriate legislation to recognise the health situation of those suffering
from post polio syndrome, particularly those who are unable to continue working.
I wish to clearly state my unequivocal support for this motion and my consequential
belief that it is time for this House to act. The impacts of polio can clearly
be of a most painful and debilitating nature, and for those who have in the past
suffered from this disease to have the long-term impacts forgotten is a travesty.
I want to pass on my thanks and respect to those who are
active in the post polio syndrome support groups around Australia and particularly
those in my home state of Tasmania. I urge all members to support this motion,
perhaps partly because of my own personal guilt at not having defined the cause
of my late aunt's illness.
Mr Tony Lawler MP (NPA, Member for Parkes - NSW)
I too wish to express support for this very worthwhile motion
calling for greater recognition and awareness of post polio syndrome. I extend
my great thanks to the member for Lyons for drawing it to my attention and to
the attention of the House, because, I am embarrassed to say, it was not a condition
that I was familiar with prior to his proposing this motion to the House.
As we have heard, the syndrome is occurring in former polio
patients. It most often appears as a second wave of chronic increasing disability
about 30 years after being infected with the virus. All polio sufferers will experience
some degree of this heartbreaking return to illness, according to the Post Polio
Institute at Englewood Hospital in New Jersey. An institute director, Dr Richard
Bruno, says that a study published last year indicates that up to half of people
with chronic fatigue are probably suffering from post polio syndrome. This represents
a devastating setback for former polio sufferers, who had long ago fought and
succeeded in putting the worst days of the disease behind them.
Symptoms vary but severity levels seem to be linked proportionately
to the extent of disability suffered by the patient in the initial stage of the
disease and some three decades prior. In the worst cases the re-emerging symptoms
can be intense, if not overwhelming, and include fatigue, painful joints, respiratory
problems and rapidly diminishing muscle strength. Ironically, the post polio syndrome
has emerged at a time when the polio disease itself has been practically eradicated
globally, with the exception of 10 countries in Africa and southern Asia. It is
estimated that between 15 million and 20 million polio survivors worldwide will
soon begin, or have already begun, to experience a sudden decline in their physical
wellbeing. On top of the bodily discomfort, victims also suffer a great degree
of psychological distress and depression at the prospect of a disease returning
to have a dramatic impact on their lives long after they have recovered - or thought
they had recovered - or had stabilised and come to terms with the extent of their
disability. To be suddenly struck with a polio related health crisis no doubt
reproduces the fear, vulnerability and uncertainty that accompanied these patients'
first bouts with polio.
Add to this the number of milder cases of polio that went
undiagnosed, where patients suffered no ill effects, enjoying good health for
their entire lives. For these individuals the onset of post polio syndrome will
be an emotionally devastating ambush - from excellent health and mobility to possibly
muscular atrophy and rapidly declining energy levels. From a health care perspective
the situation is aggravated by the number of people likely to be affected by the
post polio syndrome, which will be much higher than the number of people treated
for polio between the 1930s and the 1960s. Dr Bruno, who boasts 17 years experience
studying post polio syndrome disability, estimates that almost 40 per cent of
paralytic cases were not diagnosed at the time. Furthermore, he points out that
the figure for undiagnosed non-paralytic cases would be much higher still, since
most people who were infected with polio contracted only a mild strain. It attacked
the brain in the same way but did not result in muscular paralysis, resulting
in only flu-like symptoms and was never diagnosed. Nonetheless, these people also
fall victim to post polio syndrome symptoms, suspected to be caused by long-term
nerve damage incurred at the time of infection, leading to premature deterioration
often after calling that limb into greater use in the mistaken belief that they
were cured. As a result, exercise can make the condition worse by fatiguing damaged
connections, though some exercise to maintain movement is usually desirable.
The modern arrival of widespread polio vaccination programs
means that today's doctors have little experience with the disease and, in some
cases, can be sceptical about its late effects. I call on this House to recognise
this syndrome and note the many thousands who are at risk or already afflicted.
I support in strong terms calls to establish a national network and assessment
clinics as well as more research and education, particularly among medical professions.
There is also a desperate need for this syndrome to be recognised in legislation
as a legitimate cause for early retirement, following of course sufficient work
to establish a positive and reliable diagnosis.
Mr DEPUTY SPEAKER (Mr Jenkins)
Order! The time allotted for this debate has expired. The
debate is adjourned and the resumption of the debate will be made an order of
the day for the next sitting.
Where To From Here?
By way of background, notice of Mr Adams' motion was given
to the House of Representatives on 12 April 2000, however we were not aware of
it. On 15 August, the relevant parliamentary Selection Committee allowed a half
hour on 28 August for presentation of, and debate on, the motion. Furthermore,
should debate not conclude at that time, the “Committee determined that consideration
of this matter should continue on a future day”. Again, we were not aware
of this. Now that we are aware, we must keep post polio on the political agenda.
The debate which started on 28 August has not resumed to
date, and if this does not occur before early next year the motion will lapse.
We owe it to ourselves not to let this happen! With our needs raised in the Australian
parliament for the first time, it is now up to Australian polio survivors to take
advantage of the opportunity presented. The door has been opened thanks to the
good work of our Tasmanian colleagues and we should do all we can to keep our
foot in the door, and hopefully push it even wider open by making sure our voices
are heard and our needs are recognised.
To recap, what Mr Adams' motion seeks to achieve (in part)
is the support and resourcing of the Australian Post-Polio Networks, the establishment
of assessment clinics, the education of medical professionals, and the encouragement
of research into post-polio syndrome. In his speech he drew attention more than
once to the fact that only 1 in 10 people were diagnosed with polio. What he didn't
say was that this translates to over 400,000 Australians who contracted polio.
This is a huge number and one which needs to be brought home to the politicians.
In particular, our Network receives no funding to carry out its vital work. We
do not have the resources to staff our office with even one paid worker
– all the work is being done by volunteers the majority of whom are themselves
polio survivors facing increasing disability. The ongoing viability of the Network
demands that we receive government funding.
What are we doing?
As a first step, the Network's Management Committee has
resolved to write to the Federal and State Health Ministers seeking, in part,
to have post polo syndrome included on the agenda for the next meeting of Health
Ministers.
How can you help?
You can help by taking this Newsletter and your Network
booklet (Helping Polio Survivors Live Successfully with the Late Effects of
Polio) along to your Local Members and encouraging them to resume debate on,
and support, the motion. Post-Polio Awareness Week from 1 to 7 November
would be a great time to start the ball rolling. For further information, please
ring Gillian on (02) 9663 2402.
Please help us to keep the late effects of polio on the
political agenda – write to, ring, or visit your Local Members TODAY! Do
all you can to help them appreciate the extent of the problems you are facing.
Polio survivors deserve help, and the Network must to be resourced to provide
this help. We shouldn't have to go it alone any longer – we need government
support!
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.
A new use for poliovirus?
Microbiologists Dr M Gromeier and others (published in the
Proceedings of the National Academy of Sciences, June 2000) have
used modified polio virus to fight glioma tumours (a cancer that usually resists
treatment) in mice. In one experiment the researchers grafted human cancer cells
into the mice's legs, waited for the cancers to grow and then injected half of
the mice with the modified poliovirus. The tumours of mice injected with polio
disappeared within a fortnight while tumours in the untreated group continued
to grow. The report of the findings in the online journal Healthscout (www.healthscout.com)
said that many scientists believe that altered viruses could be
the proverbial silver bullet against many forms of cancer because they can be custom-tailored in virtually infinite ways to do everything from trigger
a highly targeted immune response against tumour cells to attack and destroy only
malignant tissue. Virologist, Bernard Roizman, calls the results interesting
and among the strongest anti-tumour effects of altered virus that he has seen.
However he warns that Polio doesn't naturally infect mice, so the fact
that the modified form killed transplanted cancer cells but spared other
tissues doesn't say anything about what it might do to humans … polio
is a notoriously slippery agent with an extraordinary capacity to mutate. If
therapeutic strains were to become virulent to brain cells in addition to tumours,
the results could be devastating. A brain tumour specialist said he is cautiously
optimistic about the findings. How ironic if polio should become a cancer
fighter!
Dolls with disabilities
Several years ago Mattel, the manufacturer of Barbie,
produced Share a Smile Becky who uses a wheelchair. However it turned out
that Becky could not visit Barbie because Barbie's Dream House was not
wheelchair accessible. Mattel was forced to redesign Barbie's house so that Becky
could come to play. Mattel has just released Paralympic Becky who rides
a racing style wheelchair. She comes with a water bottle, and gold medal. Another
recent release is Sign Language Barbie whose right hand is moulded in the
American Sign Language sign for I love you. This Barbie is advertised as
a teacher of deaf people rather than being deaf herself. Mattel, who have received
much very favourable publicity from the media and disability organisations for
the dolls, say they have helped raise the level of community understanding about
people with disabilities. However do not expect Becky to raise many little girls'
disability awareness. I thought Charlotte, my grand-daughter, would like to own
a Becky. As I could not find her at any local shops I made my first excursion
to the large American Internet toyshops. There was no sign of Share a Smile
Becky until I found her in a doll collectors' shop for $US158. The advertisement
said, This is a very hard to find doll and an exclusive. Grab this doll now,
she is a very scarce piece and very desirable. Needless to say Charlotte and
Becky won't be sharing smiles! I also discovered that paraplegic Becky has flat
(right-angled) feet so she is able to stand on her own. Barbie, the able-bodied
doll, has feet shaped to fit high heeled shoes so she cannot stand on her own.
A person with feet like Barbie would be considered disabled. I think there's a
moral to this tale, perhaps people with disabilities are better grounded in reality
than able-bodied folk.
Polio vaccination in India
On a recent public health Sunday 650,000 health centres
in India aimed to administer polio vaccine to 140 million children Reuters
reported. India, which now has the majority of new polio cases in the world, hopes
to see the last cases of the disease in late 2000 or early 2001. India is the
world's largest consumer of oral polio vaccine using 1,150 million doses a year.
Designer clothes for women with disabilities
This July, seven Italian couturiers adapted their designs
for women with disabilities according to Associated Press. Sixteen models
rolled along the catwalk at one fashion show. Designer, Egon von Furstenberg said,
The technicality is different because you can't have any buttons,
any zippers, but a woman is a woman, and a woman wants to be
beautiful, always. The article shows glamorous blonde model Raffaella Fanelli
in a glittering evening gown in her wheelchair. She is quoted as saying how important
the shows have been and hopes that now designers will understand that we have
special needs, and finally design dresses we're able to wear.
Biography of life in an iron lung
Through a Looking Glass is
the diary of Doris Nelson who contracted polio as a young woman and spent 37 years
in an iron lung. She was mentioned in the Guiness World Book of Records.
Doris typed her diaries by mouth and they have been published after her death.
At the time she contracted polio she was a beautiful girl, engaged to be married
to Tom, who refused to break off their relationship. Doris decided I had to
cut the tie … it's senseless for both of us to suffer the consequences [of
polio] … I couldn't say this to Tom because he'd disagree. I told him very
bluntly, I didn't love him anymore and maybe I never really did. This was cruel
but it's the only way he can walk away from me without feeling guilty … Everyone
agrees I've done the right thing. Have I? Tom visits her over 30 years later
and confesses I've thought of you every day for the past 30 years but
I guess you always loved the other guy. To his great distress she whispers
I never stopped loving you. It is only toward the end of her life that
she had the equipment to leave home for outings. A visit to the dentist is exciting!
Doris' faith in God was important in helping her to survive not always on soaring
wings but at least above a level of despair. One of her prayers in the book
is:
Lord help me to achieve
Charm in my life through
inner beauty
High in my life through
faith
Anthem in my life through
love
Rhythm in my life through
giving
Importance in my life through
prayer
Seasons in my life through
acceptance
Mirth in my life through
laughter and an
Ambition in my life through
persistence.
Then, surely, if I find all these things, I will have a charisma in my life
achievable only through you. Amen.
It's a brave, sad story and I couldn't help thinking that
if Doris had lived later in the century changes in attitudes and equipment would
have enabled her to be more integrated into community life. The book is available
for $US13.95 from the publisher, DeForest Press, on their website www.deforestpress.com.
The address is PO Box 154, Elk River, MN 55330, USA. Thank you to Richard DeForest
for generously providing a review copy to the Network.
Yet another use for poliovirus
Crippling poliovirus leashed to repair nerves!
This was the headline in an Alabama newspaper in August when the journal
Nature Biotechnology reported research by Casey Morrow, professor of Microbiology
at the University of Alabama. Morrow's research team has taken advantage of the
poliovirus' ability to target the motor neurones in the spinal cord that are responsible
for movement. As we know from personal experience the poliovirus destroys them.
Morrow has changed the virus so that it cannot destroy these cells. He plans to
use the virus to deliver useful proteins that can suppress swelling and help re-growth
of damaged neurones in the spine. The safety of the modified virus has been tested
successfully on mice. Now the researchers are testing whether it can safely deliver
proteins that will repair nerve cells. Human trials are not expected for about
three years. The researchers suggest that in the future the modified virus will
be injected into the spinal fluid after spinal cord injury to prevent the swelling
that often damages motor neurones and to stimulate re-growth. Multiple sclerosis
and motor neurone disease (ALS) are also mentioned as diseases that may be helped
by the technique.
Memorial for a polio hero
When the Franklin Delano Roosevelt National Memorial in
Washington was designed there was no depiction of the president in a wheelchair.
As Hugh Gallagher reports in the online journal Spinewire thousands of
Americans with disabilities protested, raised money and lobbied Congress in an
effort to commemorate the greatest president of the 20th
century as one of us, a person with a disability. Now
there is to be a statue of Roosevelt sitting in the simple wheelchair he designed.
The chair was a kitchen chair to which he attached wheels. The big wheels were
in front so he could turn on a dime. The chair, unlike the bulky wicker chairs
of the time, could fit in the boot of a car. The life-size statue will be placed
on the pavement without a plinth or a pedestal. People walking around may overlook
it or bump into it as they do with people using wheelchairs. Wheelchair users
will be able to sit side by side with the president. Children will be able to
sit on his lap. The inscription on the long wall behind the statue is his
wife's comment about his polio. He had to think out the fundamentals of living
and learn the greatest of all lessons - infinite patience and never-ending persistence.
Gallagher says that visitors' eyes will be drawn to the inscription and because
of its length they will pause to read it word by word. They will look at the statue
and contemplate the achievement of this man in a wheelchair. He believes that
the statue will become a beacon like the statue of liberty. It will proclaim that
in the USA people with disabilities are full citizens, empowered with all the
rights that other Americans have. The memorial will be completed at the end of
this year.
Carpal tunnel syndrome in polio survivors
The carpal tunnel is an area in the wrist shaped like a
shallow valley. Nine muscle tendons and the median nerve pass through it. There
is a tough ligament across the valley so it is a crowded area. Irritation can
make the tendons swell which squeezes the nerve. This may cause weakness, aching,
pain, numbness, and tingling and limit range of movement. Polio survivors are
prone to develop carpal tunnel syndrome because they frequently use their hands
to operate assistive aids such as wheelchairs or crutches or to carry out everyday
activities such as rising from chairs and climbing stairs. The condition is often
treated by surgery. Several members of the Network have had surgery but did not
experience benefits. Others report good results. If your doctor is considering
surgery you may want to bring to his/her attention a research study, Clinical
management of carpal tunnel syndrome in patients with long-term sequelae
of poliomyelitis, by W Waring and R Werner, published in The Journal of
Hand Surgery in 1989 (Volume 14A, page 865). These researchers found that
in the long term, polio survivors who had had carpal tunnel surgery reported a
similar number and type of problems as survivors with the syndrome who had not
had surgery. The authors say that polio is not an absolute contraindication to
this surgery but a cautious approach needs to be used when evaluating this
population, especially those who use canes or crutches constantly. Management
strategies need to be designed that will permit patients who use canes and crutches
to continue their use of assistive devices while decreasing the risk of exacerbating
their condition or more hopefully to prevent its initial occurrence.
A book that describes stretching exercises useful for carpal
tunnel syndrome (and many other parts of the body where polio survivors experience
pain) is Conquering Carpal Tunnel Syndrome and Other Repetitive
Strain Injuries. It was written by Sharon Butler and published in 1996
by New Harbinger Publications, California. Gleebooks, Glebe, have it for sale
for $34.95. It is available on Amazon.com and BarnesandNoble.com
for $US16.15.
AIDS and polio vaccine update
In the December 1999 issue of the Newsletter I reported
the theory that AIDS was introduced into the human population when the Wistar
Institute produced the early oral polio vaccine using tissue cultures from chimpanzees.
The Wistar Institute denied using chimps and released samples of the early vaccine
so that the allegation could be tested. Separate laboratories in two different
countries have now tested the samples. They found no evidence of chimp DNA. This
makes it very, very unlikely that the theory is true (Associated Press).
Support Group News
Neil von Schill Phone:
(02) 6025 6169
Support Group Co-ordinator Fax:
(02) 6025 5194
In preparation for the Annual Report I sent out a written
request to Support Group convenors for a brief verbal or written report on their
group's activities. I was very pleased to receive fifteen written replies and
four telephone responses to my request. Many convenors went to a great deal of
effort to provide a comprehensive written reply for which I was very grateful.
I believe that the state of the Support Group network is
very healthy and something we should all be proud of. Remember, if you want any
information about our Support Groups, or would like to join one in your local
area, please don't hesitate to give me a call.
Because space in the Annual Report is limited, I am taking
the opportunity here to share with you in more detail what the Support Groups
around the state, and the ACT, are doing.
Brian Toby, who has been a
convenor since 1994, continues to operate a telephone Support Group from Campbelltown.
Brian would like to hear from anyone in the greater Campbelltown area and can
be contacted on (02) 9618 2279.
The Wollongong Support Group is convened by Dorothy
Robinson who reports that they currently have from two to eight members attending
their meetings which are held every two months. She is pleased that one new member
found the group from the regular notice in the local paper whilst another was
referred by a local GP. This is very encouraging.
The Northern Inland group has a unique way of maintaining
contact between members by means of their Round Robin where a book containing
messages is posted from member to member. This innovative method was pioneered
by one of our original convenors, Barbara Chapman-Woods, who has since
moved to Springwood. I would like to pay special tribute to Barbara who is a wonderful
inspiration to polio survivors for the marvellous contribution that she has made
to our Network. Many thanks, Barbara!
Whilst not convening a group, Laurie Seymour has
undertaken to continue the circulation of the Round Robin and is publishing
a newsletter The Link to help members in the north west to keep in contact.
We wish Laurie well in this venture.
It was good to hear from Marion Wardman who flies
the flag in the west of the state at Nyngan. Marion has just welcomed a
new member who has recently moved into town, and has regular contact with convenors
at other centres.
You will be pleased to know that Bernie O'Grady has
been able to continue in his role as convenor of the Blacktown/Lower Blue Mountains
Support Group. Bernie's group meets on the third Monday of the month at the Kingswood
Community Health Centre. He also keeps in regular contact with Barbara Chapman-Woods.
Our newest Support Group is in Orange where convenor
Susie Simmons is currently conducting a telephone Support Group. Susie
is keen to contact any polio survivors in the Orange area with the view to holding
a meeting so would welcome a call on (02) 6361 0630.
The Northern Rivers group in the far north of the
state meet every second month and alternate their meetings between Lismore and
Ballina. Its convenor, Rosalie Kennedy, reports that nine or ten people
regularly attend meetings and actively participate in the discussion. They are
looking forward to their Christmas gathering.
Another busy lady is Vera White of Cowra who adds her Support Group
convenor role to a range of other community commitments. Vera conducts a telephone
support service in Cowra and very much looked forward to attending the Paralympics
opening ceremony.
The Northside Support Group meets monthly on the
first Saturday at the home of convenor, Ruth Wyatt. There are usually eight
to ten members present and they share afternoon tea with lots of fun and laughter.
Last year they joined with the Hornsby group for a very enjoyable Christmas celebration
and hope to do the same again this year. Kerry Jenkin, who convenes the
Hornsby group, is very much looking forward to their combined get together
and is looking out for a venue. Kerry hopes the Hornsby group will be able to
meet on a more regular basis in the new year.
Liz Lynes of Medlow Bath has
been working very hard to create opportunities for members in the Upper Blue
Mountains/Lithgow area to meet. I am sure that people appreciate the effort
that she has put into organising a variety of activities. We were sorry to hear
from Liz recently of the passing of one of her members, Barry Creevey, from Lithgow.
Barry had been a member of the Network since its inception in 1989 and we passed
on our condolences to his wife Annette and their family.
On the Central Coast a very active group of eight
to ten members regularly meet at the Kincumber Multi Purpose Centre. Barbara
Tunnington, who convenes the group, tells me that it is a very friendly, positive
group that enjoys welcoming new members. They have some members with special talents
who keep them busy and well informed.
The Inner West group is one of the oldest established
groups and meets on the second Saturday of each month at the home of convenor,
Claire Dawson. Claire and her husband, Bill, cater for their Christmas
party each year where spouses and past members also attend.
The ACT Support Group in the nation's capital is
one of our larger support groups and hosted the Network's first, and very successful,
country Seminar in 1998. Co-Convenor, Roger Smith, reports that the group
meets every two months at the Pearce Community Centre with attendance generally
averaging in the teens. They enjoy have a guest speaker which usually ensures
a good roll up.
In Grafton, our convenor, Susan Stewart, is
happy to continue in her role as contact person for the Network and as a liaison
officer with local community services. This is a vital role and one which we need
replicated throughout the city and country. Thank you, Susan.
Our largest Support Group is the Hunter Area group
which has in excess of 20 members in attendance at meetings. These are held on
the first Wednesday of each month at the Toronto Workers Club, followed by lunch.
The Hunter group has its own executive officers, capably guided by convenor/secretary,
Wendy Chaff, who also publishes their bi-monthly newsletter. The group
often has guest speakers and regularly holds Open Forums for members to share
information and discuss issues.
The Support Group serving the Coffs Harbour area
continues to meet on a monthly basis, attracting eight to ten members to meetings.
Convenor, Ken Dodd, tells me that a new member has recently joined and
they are looking forward to their Christmas get together next meeting.
Finally, to my own group in Albury. We continue to
meet informally on a needs basis. Because of our location on the southern border,
most members also belong to the Victorian Network and we have some cross-border
interaction with members of the Hume Support Group in North East Victoria.
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