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Polio Perspectives
Vol 21 No 3 Spring 2009
wheelchairs enjoying the beachside
cafes and activities.
Polio Perspectives
is published quarterly by
Independence Australia
Well, Spring has just about ‘sprung’ Before our Polio Day, however, I
208 Wellington Street and I, for one, am looking forward have been invited to speak at Post-
Collingwood Victoria 3066 to those longer, warmer days. As Polio Network (NSW)’s One-Day
P 1300 704 456 I seem to muse in every quarterly Country Conference on Saturday 26
F 1300 704 451 edition of Polio Perspectives – where September in Wagga Wagga. Other
E polio@independenceaustralia.com has the time gone? We are speedily speakers include Simon Mathieson
W www.polionetworkvic.asn.au approaching our Health and Wellness from Polio Services Victoria and Sue
www.independenceaustralia.com ‘Try Day’, which will be held on Gorman from IDEAS (Information on
Monday 12 October (see pages 10 Disability & Education Awareness
POLIO NETWORK VICTORIA & 11 for details and Booking Form) Services). If this is a convenient
Mary-ann Liethof – 9418 0411 during Polio Awareness Week 2009. location for you, contact Post-Polio
We are very grateful to Darebin, Network on (02) 9890 0946 for
POLIO ADVISORY COMMITTEE Moreland and Yarra Councils for details.
Chairperson boosting our funding for the day and
Whilst we’ve been gathering stories
Jill Burn – 9499 4015 ensuring we can keep the costs down
for the ‘Glimpses of Polio’ book
to $10.00 a head.
Members project, the Knox-Yarra Ranges
Geoff Dean – 5662 2643 This year have aligned our Polio Polio Support Group has also been
Michael Judson – 0412 302 997 Awareness Week with Post-Polio progressing on their own publication,
Jo McKenna – 9308 8440 Health International’s (PHI) ‘We’re ‘The Calliper Kids’. The group has
Gordon McKinnon – 5565 8660 Still Here’ campaign, although we successfully sought funding grants
Liz Telford – 9489 8328 do diverge on the theme. PHI is from Shire of Yarra Ranges, Boronia
Peter Willcocks – 9578 5953 focusing on ‘Improving Community Rotary (see page 12), Bendigo Bank,
Accessibility’, an undeniably worthy Ferntree Gully Bowling Club and a
PAC MEETING DATES 2009 cause which everyone can get number of other small donations.
s 3EPTEMBER involved with. If you ‘surf the net’, They hope to launch the book early in
s /CTOBER check out the details on PHI’s 2010.
s .OVEMBER webpage: www.post-polio.org/
In this edition, you will also read
WereStillHere.html
about the Polio Australia delegation
USEFUL PHONE NUMBERS Since returning from Warm Springs, trip to Parliament House, Canberra
Polio Services Victoria – 9288 3845
USA, I have visited several Polio in June (page 6). I joined Gillian
Breakdown Service (RACV) – 131 111
Support Groups to share some of Thomas, her husband Peter, and
Carers Association – 1800 242 636
Centrelink, Disability – 132 717 the information I learned at PHI’s Neil von Schill from Post-Polio
Centrelink, Aged – 132 300 Polio Wellness Retreat and Polio Network (NSW), and Dr John
Disabled Motorists (Vic) – 9386 0413 in the 21st Century Conference. Tierney, ex-politician now working
Emergency AH Service – 1800 059 059 Those groups include Bairnsdale, as a Government lobbyist. All our
Emergency Wheelchair and Bayside (Hampton) – who were Australian state networks are
Scooter – 9362 6111 celebrating their first anniversary, working hard – and on a volunteer
Independent Living Centre Geelong, Northern Region (Coburg), basis – to ensure that this national
– 1800 686 533 Bendigo, South Eastern (Springvale), body attracts the funding it needs
Melbourne Mobility Centre Warrnambool, Ballarat and to employ staff and get established.
– 1800 735 266 Wangaratta. More on Then Polio Australia can start
TADVIC – 9853 8655 the Warm Springs working on its vision to ensure that
Victorian Aids and Equipment experience will all polio survivors have access to
Program – 1800 783 783 be presented adequate support and information
Half the things that on Polio Day together with comprehensive,
by fellow consistent health care from a range
people do not succeed travellers of well-informed and educated
in are through fear of Shirley professionals. You can help by
Polio Perspectives welcomes articles
making the attempt. Glance, bending your own local MP’s ear
of interest and reserves the right to
edit or reject submissions as it sees Fran Henke, today!
fit. Published articles do not necessary
James Northcote Liz Telford
reflect the policies of the organisation. Hope to see you at the Health and
Any information in Polio Perspectives is not and me.
intended to be a substitute for professional Wellness ‘Try Day’! s
medical advice.
– Mary-ann Liethof
On November 18, 1995, Itzhak with just three strings. I know that,
Perlman, the violinist, came and you know that, but that night
Itzhak Perlman refused to know that.
on stage to give a concert at
Avery Fisher Hall at Lincoln You could see him modulating,
Center in New York City. changing, re-composing the piece in
his head. At one point, it sounded
If you have ever been to a Perlman like he was de-tuning the strings to
concert, you know that getting on get new sounds from them that they
stage is no small achievement for had never made before.
him. He was stricken with polio as a
child, and so he has braces on both When he finished, there was an
legs and walks with the aid of two awesome silence in the room. And
crutches. To see him walk across the then people rose and cheered.
stage one step at a time, painfully There was an extraordinary outburst
and slowly, is an awesome sight. of applause from every corner of
the auditorium. We were all on our
He walks painfully, yet majestically, feet, screaming and cheering, doing
until he reaches his chair. Then he everything we could to show how
sits down, slowly, puts his crutches much we appreciated what he had
on the floor, undoes the clasps on done.
his legs, tucks one foot back and
extends the other foot forward. Then He smiled, wiped the sweat from
he bends down and picks up the this brow, raised his bow to quiet us,
violin, puts it under his chin, nods to and then he said – not boastfully,
the conductor and proceeds to play. but in a quiet, pensive, reverent tone
– “You know, sometimes it is the
“You know, sometimes it is
By now, the audience is used to this artist’s task to find out how much the artist’s task to find out
ritual. They sit quietly while he makes
his way across the stage to his chair.
music you can still make with what how much music you can
you have left.” still make with what you
They remain reverently silent while he
undoes the clasps on his legs. They What a powerful line that is. It has have left.”
wait until he is ready to play. stayed in my mind ever since I heard
it. And who knows? Perhaps that is
But this time, something went wrong. the definition of life –- not just for
Just as he finished the first few bars, artists but for you and me too.
one of the strings on his violin broke. Thoughts:
You could hear it snap – it went off Here is a man who has prepared all
his life to make music on a violin of I got this story from Peter
like gunfire across the room. There
four strings, who, all of a sudden, in Thomson in his regular TGI
was no mistaking what that sound
Mondays newsletter.
meant. There was no mistaking what the middle of a concert, finds himself
he had to do. with only three strings; so he makes If you enjoy motivational stories,
music with three strings, and the please visit his web site
We figured that he would have to get music he made that night with just www.tgimondays.com.
up, put on the clasps again, pick up three strings was more beautiful,
the crutches and limp his way off It is very easy to make excuses
more sacred, more memorable, than about why we cannot do
stage – to either find another violin or any that he had ever made before,
else find another string for this one. something. “If only I had...” holds
when he had four strings. us back.
But he didn’t. Instead, he waited a
So, perhaps our task in this shaky, To move forward in our lives we
moment, closed his eyes and then
fast-changing, bewildering world in need to get beyond these limiting
signalled the conductor to begin again.
beliefs and replace them with
which we live is to make music, at
The orchestra began, and he played positive “I Can” beliefs.
first with all that we have, and then,
from where he had left off. And he when that is no longer possible, – Eric Sutherland
played with such passion and such to make music with what we have Make the Connection
power and such purity, as they had left. s
never heard before.
Of course, anyone knows that it is Source: www.ericsutherland.biz/articles/
impossible to play a symphonic work music.html
A WHO-led immunisation campaign in the 1990s eliminated The polio problem is just the latest challenge to global health
polio from more than 120 countries, but failed in its target to authorities trying to convince wary citizens that vaccines
eradicate the lethal or crippling disease entirely by 2005. can save them from dreaded disease. For years, myths have
abounded about vaccines — that they were the Western
Since then polio has re-emerged across Africa after donors world’s plan to sterilize Africans or give them AIDS. The sad
lost momentum, routine immunisation dropped off and local polio reality fuels misguided fears and underscores the
obstacles emerged, according to the report. The Federation challenges authorities face using a flawed vaccine.
recently sought just 2.4 million US dollars for 80 million polio
vaccines but has received less than half that funding. Nigeria and most other poor nations use an oral polio
vaccine because it’s cheaper, easier, and protects entire
Meningitis, which often surges to epidemic proportions communities. But it is made from a live polio virus — albeit
in Africa, kills half of the people infected, while neglected weakened — which carries a small risk of causing polio for
emerging and re-emerging diseases affect about one-sixth every million or so doses given. In even rarer instances, the
of the world’s population, mainly in poor countries. The virus in the vaccine can mutate into a deadlier version that
A:
Dr Federick M. Maynard, There is no official certification There is no ‘one size fits all’ answer
MD (Retired) for a ‘polio doctor’. I believe the to your question. The question is
most common use of this informal better asked, “Are polio survivors’
designation is for a physician with medical and rehabilitative needs
Reprinted from Post-Polio Health knowledge, experience and interest being met by their current providers?”
(formerly called Polio Network News) in evaluation and treatment of polio If not, then specialist consultations
with permission of Post-Polio Health
survivors. are appropriate. If survivors need a
International (www.post-polio.org).
comprehensive evaluation of medical
Any further reproduction must have Given the most common new
permission from copyright holder.
concerns and functional changes,
disabling medical problems of polio
then I think seeing a ‘polio doctor’ is
survivors, physicians with expertise in
invaluable.
neuromuscular disease management
Q:
that includes the ability to recognize
People in my post-polio
support group say I need
and treat chronic musculoskeletal
pain and respiratory problems are
A: Regarding the question about
tracking down your medical
records, they might be of interest, but
to see a ‘polio doctor’. What ideal. The specialty background of
of little real value to your physicians
these physicians is most commonly
is a polio doctor? Do you neurology, physical medicine &
in making treatment decisions. To find
an explanation for your muscle pain,
agree that polio survivors must rehabilitation (physiatrist), orthopedics,
seek an evaluation by a physician
see a physician with such a pulmonary and family practice.
who familiar with post-polio syndrome,
designation? Do I need my old I am not of the opinion that every polio such as a local neurologist or physical
medical records? survivor must see a polio doctor. If a medicine & rehabilitation specialist.
survivor is experiencing a series of new
He/she should perform an EMG
unexplainable and disabling symptoms
(electromyography) for two good
and is unable to obtain satisfactory
reasons. First, it is the best test to
help, then I would encourage him/
establish that the muscles now having
her to seek evaluation by a polio
pain do show a pattern of electrical
doctor/post-polio clinic. These
activity compatible with having remote
physicians most commonly will provide
(old) polio involvement; that is, they
consultation services to your primary
appear to have lost the typical number
care physician and may also provide
of motor nerve cells.
continuing comprehensive follow-up of
post-polio related problems. Second, the test will show if the
nerve/muscle cell status is stable
Many survivors need a network
or unstable. This fact can guide your
of medical providers (orthopedist,
physicians and therapists in treating
pulmonologist, orthotist, physiatrist,
your muscle pain with exercise,
neurologist, etc.) and may need help
including how much exercise and how
with coordination and communication
concerned you or they need to be
among them. A primary care physician
about over-exercising/overusing these
can fill this role, although many polio
painful muscles. s
survivors do this function themselves,
because they are sufficiently
sophisticated with medical and
rehabilitative issues.
News from Israel is not adequate to cover the cost of 1990s, when many of us needed
continued from page 1 adaptations of vehicles and homes to greater support, the minimal service
Now, disability support, nowhere near accommodate chairs and scooters, or that remains contrasted favourably with
the level needed to deal with the the upgrading of orthotics. their lack of polio specific services or
increased needs of people with polio specialists. The lack of appropriate
The group was interested to hear
is provided largely by the National response is the basis of their claim.
about the response to the epidemic in
Insurance and seems to be dependent According to the polio law, a special
Victoria and expressed their frustration
on a diagnosis. The existence of ‘Post committee nominated by the ministry of
that such expertise existed but their
Polio Syndrome’ is important in gaining health will decide upon the treatments
doctors were unaware. Even as I
benefits. A primary concerns for this that the polio survivors should take and
described the premature reduction of
group is that the National Insurance all the other steps that will ease the life
polio services in Victoria in the early
of the polio victim.
Getting Mobilised!
Recently Mary-ann asked me doing. However, to get the benefits of this activity and your ratings e.g.
to be involved in the up-coming activity on our mind, body and spirit we Tuesday 1pm – gardening (Pleasure 5,
Polio Day 2009. need to mobilise ourselves. If you are achievement 3).
experiencing trouble with motivation,
Reading over the plan for the day I was This process allows you to record
some techniques that work with
struck by how many of the scheduled all your activities and may help you
depression may be helpful.
activities to ‘try’ are similar to what we recognise when your life is out of
recommend for clients experiencing How do we push ourselves to balance. Too many boring, difficult
depression. Loads of research activities will provide little emotional
higher levels of activity when we nourishment. Further, you will get little
shows that getting out there and don’t feel like it?
doing activities like playing Bocce or satisfaction from life if there are too
practicing yoga can significantly reduce One widely used technique to few enjoyable activities you can master
the length and severity of depression. re-energise and overcome lack in your daily schedule. At the very
of motivation is called ‘activity least, the monitoring process will help
However, when depressed a person’s scheduling’. The process is reasonably you discover how much effort you are
motivation to ‘try’ can be a problem simple, with early steps involving putting in. It’s worth noting to yourself
as one of the effects of depression is monitoring your daily activities and that the things you are doing are real
feeling immobilised. It’s hard to push later progressing to scheduling in achievements, given how you feel,
yourself to do the normal everyday advance increasing numbers of physically and emotionally.
activities, let alone add challenging pleasurable activities.
new ones. The next step is to begin scheduling
Essentially you begin by recording pleasurable activities that you feel
In addition, feeling immobilised is your activities over the course of a competent in. As the weeks go by
not just a symptom of depression it week. After each hour you record the you can increase these activities in
is also a cause. The less you do the activity you undertook during that hour, a sustainable way. As you complete
more depressed you feel; and the the amount of pleasure you derived more and more pleasurable activities,
more depressed you feel, the less you from that activity and your perceived you will begin feeling better and more
do. This process works like a negative sense of achievement given how tired energetic. Soon the negative feedback
spiral, encouraging us to do less, and or depressed you felt at the time. I loop is replaced with a positive one. As
prolonging depression and inactivity. A find its best to use a ten point scale you feel better, you have more energy
similar process may also affect people from 1 (no pleasure/minimal sense and motivation to do more, which
with the late effects of polio as activity of achievement) to 10 (significant makes you feel even better. One last
becomes more and more challenging. pleasure/great sense of achievement). tip to improve motivation is to schedule
As an example you might attempt activities with other people. The fear
What about if the mind is willing of letting them down will reduce the
some weeding one day during the
but the body is weak? chance you will cancel and miss out on
week you recorded your activity. On
Feelings of loss and depression are your record sheet you would detail the positive benefits of the activity.
also not unusual if we find we are If you are struggling with motivation
unable to perform tasks we used to and would like some assistance to
enjoy. Those of you experiencing the mobilise yourself before the ‘try’ day in
late of effects of Polio may be battling October, please contact the Psychology
a loss of strength, function and Service for information and resources.
ability. When faced with these losses I will also be attending Polio Day 2009
you may feel helpless, depressed or and am happy to chat with you about
immobilised. I imagine ‘trying’ new this topic or any other questions you
things is the last thing you feel like have on the day. s
How and when we make the transition Adapted activities for the disabled For me there was a sense of being an
to greater use of mobility aids, and seem better developed in Israel than in ‘honoured guest’ when I was informed
how we shift psychologically is another Australia. Haya is involved in wheelchair that I did not need to pay the entrance
common concern we discussed. dancing of all sorts – salsa, folk and fee. I would like to see this introduced
Although Ron and I have travelled often, others. Yehuda has played basketball in Australia. This inspiring group of polio
this was our first trip overseas taking for many years. I had enjoyed free entry survivors show that with preparation
a wheelchair. It was both liberating to museums and art galleries as a and tenacity it is possible to influence
to be able to keep pace with Ron person with a disability. This seemed to legislators even in such a difficult
but also challenging to learn how to me a great way to encourage people with political environment. We thank our
negotiate our way around an unfamiliar disabilities, who may be discouraged Israeli friends for their hospitality and
environment that is not designed with by the difficulty of negotiating a chair or look forward to hearing more positive
wheelchairs in mind. scooter, to public venues and events. news about their campaign. s
PROGRAM
10.30am Registration / Refreshments in Foyer
11.00am Housekeeping and Introduction of Independence Australia Rep and Polio Advisory Committee Chair
11.10am Welcome from IA Rep and PAC Chair
11.15am KEYNOTE SPEAKERS:
Trying new things at the Post-Polio Wellness Retreat (Roosevelt Warm Springs, April 2009)
s Shirley Glance, Convener, Bayside Polio Support Group
s Fran Henke, Member, Mornington Peninsula Post Polio Support Group
s Liz Telford, Member, Polio Advisory Committee
12.00pm Stretch Break
12.10pm ‘Living with Polio in the 21st Century’ Conference summary
s Mary-ann Liethof, Polio Network Victoria
3.15–3.30pm RETURN TO GREVILLEA ROOM FOR DOOR PRIZE DRAW & CONCLUSION
Address
Name on Card
Signature Amount $
Phone/s (Day)
(Mob)
Email
RECEIPT (will be handed out during registration)
Special dietary needs:
Name
Coeliac
Food Allergies/Intolerance:
please specifiy For: Polio Day 2009 Amount: $