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Polio Network Victoria

Polio Perspectives
Vol 21 No 3 Spring 2009
wheelchairs enjoying the beachside
cafes and activities.

News from At the meeting, besides Jacob Surany,


were Yehuda Doron, Ira Taponova,
advocate Yonatan Davidovitch, Valentina
Israel Davidovitch (the wife of Yonatan), Haya
Keinan, Margalit Gabai and her son
by Liz Telford Jacob Gabai, who provided excellent
translation between Hebrew and English.
Our main discussion was about the
differences in responses to polio
between our two countries. I used
my own experience of having polio
in 1956 to describe the context of
Australian post-war services with Dame
Jean McNamara and other specialists
researching treatments and establishing
the physiotherapy program I benefited
from.
Meanwhile in 1956 the new State
of Israel, just eight years old was

IN 2007 a small group of polio


survivors in Israel won a
compensation claim against the Israeli
husband Ron to visit our daughter who
is doing a ‘gap’ year there and decided
it would be interesting to meet them to
already fighting for its existence and
was building a modern economy. It
was absorbing many thousands of
government. This polio compensation exchange stories of the experience in immigrants and displaced people from
is over and above all other benefits our two countries. post war Europe, other Arab countries
received as a disabled person in Israel. and North Africa. A lot was going on
I contacted Jacob Surany who had
Yehuda Doron successfully lead the but this did not stop the polio virus.
written the article. Jacob responded
claim that the 2500 Israelis who had Polio was contracted by 12,000 people
very positively to my email and a
contracted polio in Israel are suffering in Israel and another three thousands
meeting was planned. They would be
now as consequence of lack of services had contracted it either abroad or
very interested in hearing about our
and inappropriate surgery and also before 1948 (in Israel). We heard that
services in Australia, he said. For me
vaccinations received in the 1950s. The the treatment option for polio patients
this was also an opportunity to further
other 1500 Israelis who had polio but in Israel was surgery, and there
explore the experience of having polio,
contracted it abroad or prior to 1948, were no polio specific physiotherapy
something that I have become more
are not entitled to the compensation. programs. Post polio symptoms are
interested in as I learn to manage post
Yehuda who himself had polio in 1954 severe as the surgery, which tended
polio development.
and Jacob Surany who contracted it in to be orthopaedic rather than tendon
1952 are examples of the many people We met in a restaurant in Netanya, a or muscle focused has lead to further
who were subjected to inappropriate pleasant town on the Mediterranean complications. There are still no polio
surgery, the only form treatment offered about half an hour from Tel Aviv. What is specific services.
in Israel at the time. notable about Netanya is the wheelchair continued on page 8
friendly footpaths and the elevator
Having read about this case in “Post-
Polio Health”, Post-Polio Health
to the beach. There are also ramps
to the water and special water proof
Inside
International’s newsletter, I was
wheelchairs. Outdoor gym equipment Music and the power of focus
intrigued that a group of polio survivors
was accessible and being used by
had successfully lobbied on their own Polio Australia in Canberra
people of all abilities. Compared to
behalf. I was further intrigued that this
Jerusalem and Haifa this was wheelchair Ask Dr. Maynard
occurred in Israel, a country so full of
heaven and in the space of an hour
competing needs and complex issues. I Polio Day 2009
and saw at least five other people in
was to be visiting Israel in June with my
From the Editor
editor Mary-ann Liethof

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

2 Polio Perspectives Spring 2009


Music and the Power of Focus
Make the most of what you have, inner resourcefulness is always better than
external resources

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

Polio Perspectives Spring 2009 3


Red Cross warning on poor report advocated more resources, immunisation, community
prevention, better access to health services, clean water and
nation epidemics sanitation in poor nations.
“What we are saying is: if we are going to be serious, it’s
A Red Cross official has sharply criticised “complacency” not influenza alone, it’s not any issue alone, it’s a whole
towards the impact of communicable diseases on poor connected subject,” Aloudat explained.
countries, contrasting it with responses to flu or heart
disease in rich nations. Source: The Age, July 6, 2009

A report released by the International Federation of Red


Cross and Red Crescent Societies on Monday warned
that the crippling and growing burden of epidemics like
dengue fever, polio, or meningitis was not being sufficiently
Argentina Issues Polio
addressed. Warning
“We do not see interest, we only see vague, uncoordinated by Estela Mccollin Williams
interest in high-profile issues such as influenza -- which is
The Argentina Public Health Ministry issued a warning and
in itself a great risk, but not the only one,” said Tammam
adopted measures over a case of polio detected in San Luis
Aloudat, the federation’s senior officer for health in
Province, the first in 25 years.
emergencies.
Among recommendations are vaccinating the child and
Swine flu has “killed so far about 150 people, the potential
school-age population, keeping an eye on the source of the
for risk is massive, but what we have today is 14 million
infection and issuing preventive measures.
people dying mostly unnecessarily from easily preventable
diseases that require little resources,” he told journalists. A 15-month toddler was diagnosed with acute flaccid
paralysis and gammaglobulinemia, a rare pathology that
Titled “The Epidemic Divide”, the Red Cross report said a
altered his immune system and allowed the onset of polio.
focus on death rates had helped increase attention and
Hospital sources said they were able to isolate Sabin 1
resources to tackle non-communicable diseases such as
poliovirus, also known as derived Sabin virus, from the
heart attacks and cancers, now the leading killers worldwide.
child’s fecal matter.
But the dominant threat in developing countries remains
Doctor Alberto Cormillot, told the TV channel C5N that under
preventable infectious disease, and their societies were not
World Health Organization standards, preventing the disease
only ailing due the huge mortality but also the debilitating
spread demands vaccinating 95 percent of the infant and
impact of illness on their development.Resources to deal
school-age population. He regretted that some areas only
with such existing epidemics remained “scarce”, the report
had 85 percent immunization, paving the way for polio
added.
recurrence, hence the need to step up vaccination, which is
Out of the limelight, mosquito-borne dengue fever kills free in Argentina.
18,000 people a year and sickens nine million people
Source: Prensa Latina, 2 June 2009, Buenos Aires
annually, keeping them away from work and amplifying the
failings of under-resourced health care, the Red Cross said.
The report said “complacency” towards existing epidemics
was “a major threat in itself”. It highlighted the resurgence of
measles in Europe to underline that Western nations were not
Polio surge in Nigeria after
immune, especially with easy international travel. vaccine virus mutates
Asked about the World Health Organization’s role in setting by Maria Cheng (AP)
international priorities and raising attention, Aloudat said:
“The global public health community could have done better, LONDON — Polio, a dreaded paralyzing disease stamped out
including ourselves.” in the industrialized world, is spreading in Nigeria despite
efforts to stamp it out. And health officials say in some
“I am saying that there are shortcomings on all sides... cases, it’s caused by the vaccine used to fight it.
Unless all those people sit together and decide the agenda
we are not going to win this one.” He also highlighted a In July, the World Health Organization issued a warning that
shortfall in meeting UN development goals, which include this vaccine-spread virus might extend beyond Africa. So far,
health targets. “Complacency happens when goals are set 124 Nigerian children have been paralyzed this year — about
and resources aren’t allocated,” the Federation doctor said. twice those afflicted in 2008.

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

4 Polio Perspectives Spring 2009


ignites new outbreaks. The vaccine used in the United States “Nigeria is almost a case study in what happens when you
and other Western nations is given in shots, which use a don’t follow the recommendations,” Kew said.
killed virus that cannot cause polio.
Since WHO and partners began their attempt to rid the
So when WHO officials discovered a polio outbreak in Nigeria world of polio in 1988, officials have slashed the disease’s
was sparked by the polio vaccine itself, they assumed it incidence by more than 99 percent. But numerous deadlines
would be easier to stop than a natural “wild” virus. They were have been missed and the number of cases has been at
wrong. In 2007, health experts reported that amid Nigeria’s a virtual standstill since 2000. Critics have also wondered
ongoing outbreak of wild polio viruses, 69 children had also whether it is time to give up, and donors may be sick of
been paralyzed in a new outbreak caused by the mutation continuing to fund a program with no clear endgame.
of a vaccine’s virus. Back then, WHO said the vaccine-linked
“Eradication is a gamble,” said Scott Barrett, an economist
outbreak would be swiftly overcome — yet two years later,
at Columbia University who has studied polio policies. “It’s
cases continue to mount. They have since identified polio
all or nothing ... and there is a very real risk this whole thing
cases linked to the vaccine dating back as far as 2005.
may fall apart.”
It is a worrying development for officials who hope to end
Aside from Nigeria, polio persists in a handful of other
polio epidemics in India and Africa by the end of this year,
countries, including Afghanistan, Pakistan, India, Chad,
after missing several earlier deadlines. “It’s very disturbing,”
Angola and Sudan.
said Dr. Bruce Aylward, who heads the polio department at
the World Health Organization. Aylward agreed the Nigeria situation was another unwelcome
hurdle, but was confident eradication was possible. “We
This year, the number of polio cases caused by the vaccine
still have a shot,” he said. “We’re throwing everything at it
has doubled: 124 children have so far been paralyzed,
including the kitchen sink.” s
compared to 62 in 2008, out of about 42 million children
vaccinated. For every case of paralysis, there are hundreds
of other children who don’t develop symptoms, but pass on
Source: AP – Associated Press, 15 August 2009
the disease.
When Nigerian leaders suspended polio vaccination in 2003,
believing the vaccine would sterilize their children and infect
them with HIV, Nigeria exported polio to nearly two dozen Wild Poliovirus Weekly Update
countries worldwide, making it as far away as Indonesia.Nigeria Data as at 19 August 2009
resumed vaccinations in 2004 after tests showed the vaccine Source: www.polioeradication.org/casecount.asp
was not contaminated with estrogen, anti-fertility agents or HIV.
Experts have long believed epidemics unleashed by a Total cases Year-to-date Year-to-date Total in
2009 2008 2008
vaccine’s mutated virus wouldn’t last since the vaccine only
contains a weakened virus strain — but that assumption is Globally 839 1044 1651
coming under pressure. Some experts now say that once - in endemic countries 621 980 1505
viruses from vaccines start circulating they can become just - in non-endemic countries 218 64 146
as dangerous as wild viruses.
“The only difference is that this virus was originally in a Year-to-date Year-to-date Total in Date of onset of
Country 2009 2008 2008 most recent case
vaccine vial,” said Olen Kew, a virologist at the U.S. Centers
for Disease Control and Prevention. India 206 359 559 31 July 2009
Pakistan 35 31 117 28 July 2009
The oral polio vaccine used in Nigeria and elsewhere
Afghanistan 17 15 31 27 July 2009
contains a mild version of the live virus. Children who have
been vaccinated pass the virus into the water supply through Chad 13 12 37 15 July 2009
urine or feces. Other children who then play in or drink that Nigeria 363 575 798 12 July 2009
water pick up the vaccine’s virus, which gives them some Angola 19 23 29 8 July 2009
protection against polio. But in rare instances, as the virus Guinea 15 0 0 6 July 2009
passes through unimmunized children, it can mutate into a
Liberia 7 0 0 29 June 2009
strain dangerous enough to ignite new outbreaks, particularly
if immunization rates in the rest of the population are low. Côte d'Ivoire 24 0 1 26 June 2009
DRC 3 3 5 24 June 2009
Kew said genetic analysis proves mutated viruses from the
CAR 14 1 3 22 June 2009
vaccine have caused at least seven separate outbreaks in
Nigeria. Though Nigeria’s coverage rates have improved, Kenya 17 0 0 30 May 2009
up to 15 percent of children in the north still haven’t been Sudan 44 3 26 28 May 2009
vaccinated against polio. To eradicate the disease, officials Niger 15 13 12 28 May 2009
need to reach about 95 percent of the population. Burkina Faso 12 1 6 20 May 2009
Nigeria’s vaccine-linked outbreak underlines the need to stop Uganda 8 0 0 10 May 2009
using the oral polio vaccine as soon as possible, since it can Benin 20 2 6 19 April 2009
create the very epidemics it was designed to stop, experts
Togo 6 0 3 28 March 2009
say. WHO is researching other vaccines that might work
better, but none is on the horizon. Mali 1 0 1 4 January 2009
Ghana 0 0 8 8 November 2008
Until a better vaccine is ready, WHO and U.S. CDC officials
Nepal 0 4 6 15 October 2008
say the oral vaccine is the best available tool to eradicate
polio and that when inoculation rates are nearly 100 percent Ethiopia 0 2 3 27 April 2008
it works fine.
Polio Perspectives Spring 2009 5
Noticeboard Post Polio Syndrome:
Shades of Grey
Australia today, numbering in the tens
of thousands;
‰ this number not only includes those
Have you seen the PPS: Shades of
Grey (2009) DVD produced by Polio who contracted polio in Australia during
Restoring Balance the epidemics last century, but also
by Marion Kosseck, Geelong PSG Network Victoria? This DVD is a series
of videoed interviews with eminent young polio survivors who have migrated
North American Post Polio Specialists from countries where polio is still
I would like to share with you how prevalent or only recently eradicated;
Dr Steven Sommer has really conducted during Mary-ann Liethof’s
Churchill Fellowship Study Tour in Š the needs of polio survivors have
helped me cope with headaches, been largely neglected since vaccination
Irritable Bowel, pain and other PPS 2008. It is divided into 9 Chapters and
best watched in stages: against the disease became a reality,
Symptoms. Hopefully by sharing my and as they age with chronic disabilities
experience, others may also benefit. ˆ About the participants this neglect must be addressed as a
After being referred to him 6 months ‰ Clinical structures matter of urgency;
ago, I have found his methods of Š Diagnosis
teaching me to breath correctly, ‹ over the last 20 years much attention
‹ Managing symptoms has been drawn to the development
relax, sleep better, control stress and
ΠTherapists of new, previously unrecognised,
anxiety have made such a difference
 Research symptoms which occur in people
in my life, particularly with pain relief.
Ž The big picture who were thought to have reached a
At last I am able to begin enjoying
 Information: non clinical services stable level of recovery after the acute
a better life by listening to my body
 Future of Polio Services disease;
and pacing myself.
Πsymptoms of the late effects of
I would thoroughly recommend Shades of Grey is available for sale polio include unaccustomed fatigue
listening to and following the through PNV*, on loan through your unrelated to activity, decreased strength
program on the CD below. As Dr Polio Support Group and can be and endurance, pain in muscles and/
Sommer says “We all get better at viewed for free on www.youtube.com/ or joints, an inability to stay alert,
what we practice. Learning to calm PolioNetworkVictoria weakness and muscle atrophy, muscle
ourselves is no different. It is a *$16.50 plus $2.50 postage and handling and joint pain, muscle spasms and
wonderful skill that this CD can help within Australia – contact Mary-ann on twitching, respiratory and sleep
you to learn”. Ph: 03 9418 0411 or Email: polio@ problems, swallowing and speaking
independenceaustralia.com difficulties, depression and anxiety.
Dr Steven Sommer M.B.,B.S FRACGP  over the last 20 years polio survivors
Polio Australia in Canberra have established state based post polio
began teaching stress management
in the early 90’s whilst working as organisations to provide information
a GP and senior lecturer at Monash and support for fellow survivors,
University’s Department of General and that these networks are run by
Practice. Recognising the need polio volunteers who themselves are
amongst his patients and medical experiencing increased disability and
students, he began by teaching them decreased mobility; and
techniques to manage their stress. Ž in the coming years it is increasingly
Soon he found himself presenting to inevitable that many state networks
groups of doctors, nurses, high school will cease to function as volunteers
students and people from all walks find themselves unable to continue the
of life. He has also been an invited service, thereby creating the necessity
Grand Round presenter on this topic at L–R: Darren Chester, Neil von Schill and Gillian Thomas for a central body, Polio Australia,
several major teaching hospitals. (seated) – PPN (NSW), Mary-ann Leithof – PNV, to take over responsibility for state
Dr John Tierney (Lobbyist) and Peter Garde (Carer)
functions.”
Restoring Balance is a complete stress
management program which teaches: A delegation from Polio Australia This Motion was also supported by
s Diaphragmatic Breathing – a 5 minute visited Parliament House on 24 June Darren Chester, Member for Gippsland
Senses Awareness Meditation to discuss funding for establishment (Vic), Jill Hall, Member for Shortland
s Soften & Flow Meditation (for easing and operations of this national body. (NSW), and Mark Coulton, Member for
emotional and muscle tension) Lobbying for Polio Australia is currently Parkes (NSW). A full transcript can be
s Progressive Muscle Relaxation being done voluntarily by a sub- found at: http://www.openaustralia.
(designed to aid sleep) committee made up of representatives org/debates/?id=2009-08-
s Improves well being and can relieve: from the State Polio Networks 17.121.1&s=polio#g125.1
anxiety, insomnia, headaches, IBS Management Committee. A follow-up visit to Canberra is scheduled
and other stress-related disorders. for 24 November. In the meantime, the
Following the June trip, Catherine King,
Restoring Balance CD’s sell for $25 Polio Australia committee members are
Member for Ballarat, prepared a Private
each (inc GST) plus postage and encouraging any members who have
Members Motion which was read out
handling of $3 for 1 CD / $5 for 2 or the ear of, or is willing to approach their
in the House of Representatives on
more. $5.00 from each sale is donated local MP (particularly Federal) to contact
Monday 17th August. Ms King moved -
to Polio Network Victoria. them and ask if they are willing to meet
Order Forms available from Mary-ann “That the House recognises that: with the Polio Australia delegation on
Ph: (03) 9418 0411 or Email: ˆ polio survivors continue to be the 24th November. Of course, to put
polio@independenceaustralia.com the single largest disability group in this into perspective, the MP will want to

6 Polio Perspectives Spring 2009


know what all this means for you, their remains coordinating Minister for this s Recommending to the Minister for
constituent, so you should be prepared Department. He also announced a Local Government that a council
to tell your story. new Department of Human Services be suspended or dismissed for
would oversee services for children, cases of serious failure in corporate
To find out what you can do to, contact
youth and families, housing, disability, governance.
Mary-ann on Ph: (03) 9418 0411 /
concessions and bushfire recovery. Gill
Email: polio@independenceaustralia. Mr Brumby has also charged the
Callister is the new Secretary of the
com in Victoria, or the Polio Network Essential Services Commission with
Department of Human Services. The
Co-ordinator in your state. the development of a performance
Minister for Community Services, Lisa
assessment and benchmarking regime
Neville, is coordinating Minister for the
Premier announces reforms to for local governments.
new Department of Human Services.
health, community services and Ministerial responsibilities remain
“The unfortunate reality is that cases
local government unchanged under these new
of family breakdown are becoming
Press Release: 12 August 2009 arrangements. There will be no job
more frequent and more complex. A
losses as a result of the reforms.
The Premier, John Brumby, today stand-alone department is now needed
announced a major restructure of to address rapidly growing demand on The Secretary of the Department of
health, community services and local health and community services sector,” Premier and Cabinet, Helen Silver
government functions to deliver better Mr Brumby said. will chair the Transition Taskforce for
services to Victorian communities and implementing the restructure.
“With a growing population and
families. Mr Brumby announced that
strong birth rates, it is a critical time The Office for the Community Sector
a new Department of Health would
for Government to ensure we can was established in the Department of
oversee all health services, mental
provide support to vulnerable families Planning and Community Development
health, aged care and preventative
and children. Central to this will be to strengthen and support the not-
health in Victoria, to deliver greater
addressing the workforce challenges for-profit community sector. More
accountability in hospitals.
and ensure we have the best and information may be found on: www.
“I firmly believe that these changes brightest case workers.” dpcd.vic.gov.au/communitysector
will help deliver better services to
“Across Australia, we are also facing
Victorian families and communities,” Introducing ‘Bayside Villa’
a workforce challenge in recruiting
Mr Brumby said. “We are at a crucial Independence Australia’s respite
enough case workers for vulnerable
juncture in health and hospital services home by the sea
children. Addressing this recruitment
in Victoria and Australia. Council of
issue and providing greater clarity Located in the cosmopolitan, bayside
Australian Government reforms are
around decision making will be key suburb of Williamstown, Bayside Villa is
lifting standards in our hospitals
priorities for the new Department of a newly renovated and well appointed
and reducing waiting times. A new
Human Services.” holiday respite home that has been
Department of Health – focusing on
purposefully designed to accommodate
hospital performance, mental health In further reforms, Mr Brumby also
the needs of people living with physical
and prevention – means that Victorians announced the establishment of a
disabilities. Bayside Villa offers guests:
can derive greater benefits from these new Local Government Investigations
reforms.” and Compliance Inspectorate as an s 24/7 Attendant Care
administrative office, to be headed by a s Single and double bed rooms available
Mr Brumby said the health and human s Dine in options
Chief Municipal Inspector. “This reform
services task had grown significantly s Recreation room with library & games
will strengthen the ability to prosecute
since the 1990s, accounting for s Lounge (TV, DVD, VCR, CD)
any breaches of the Local Government
nearly $4 in every $10 that the State s Central heating & air-conditioning
Act and strengthen the independence
Government invests in services, s Guest Laundry
of investigations,” Mr Brumby said. “It
employing around 13,000 staff and s On-site parking
separates Local Government Victoria’s
more than 80,000 through its agencies.
two roles of policy leadership and Cost:
“These reforms are designed to
enforcement of the Local Government Bayside Villa is an unfunded respite
increase the accountability, performance
Act.” facility which means that the cost of
and focus of our health system, our
care is not subsidised and clients
family and community services and The functions of the new Inspectorate
pay a daily rate for accommodation
social housing,” Mr Brumby said. include:
and meals. Accommodation rates are
s Systematic spot audits of compliance
Mr Brumby said the new Department of reviewed annually and available upon
with governance requirements in the
Health would also better address the request. Cost may vary if active night
Local Government Act;
needs of Victoria’s ageing population. or additional support is required
s Investigating breaches of the Local
“By 2030 there will be more than 1.4
Government Act; If you are in search of a little respite
million Victorians over the age of 65.
s Monitoring corporate governance of and change of scenery, Independence
The new Department of Health will
councils; Australia’s Bayside Villa could be
focus on ensuring older Victorians can
s Investigating alleged breaches of exactly what you are looking for.
access the services they need,” he
electoral provisions;
said. For bookings and/or further information
s Undertaking prosecutions for breaches
please contact Independence Australia:
The Premier has appointed current of the Local Government Act;
Ph: 1300 704 456
DHS Secretary Fran Thorn as Secretary s Elevating matters of gross misconduct
Email: communitysolutions@
of the new Department of Health. The of a councillor to the Victorian Civil
Minister for Health, Daniel Andrews, and Administrative Tribunal; independenceaustralia.com s

Polio Perspectives Spring 2009 7


Ask Dr. Maynard

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.

8 Polio Perspectives Spring 2009


Good Thinking
by Dr Andrew Sinclair – Independence Australia Psychologist

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

Polio Perspectives Spring 2009 9


Polio Network Victoria

Polio Day 2009 Details


VENUE Darebin Community Arts Centre
Monday 12th October Cnr St Georges Road & Bell Street,
Preston
Melways Ref 30 E1
Darebin Community Arts & Entertainment Centre
COST $10.00 per person – to be included with
Cnr St Georges Road & Bell Street, Preston
your returned application
PARKING Free, on-site parking for 250 cars
Based on the wonderful format presented at the
2009 Post-Polio Wellness Retreat at Roosevelt PUBLIC Train Epping Line stoping at Bell Station
TRANSPORT
Warm Springs, Georgia, USA, this Polio Day will Tram 11 From Collins Street to West
Preston stopping at the corner of Miller
introduce you to a range of experiences and Street and St Georges Road, Preston
activities addressing the overall Body – Mind – Tram 86 From Bourke Street to Bundoora
Spirit aspects of Health and Wellness. You may stopping at the corner of Bell Street and
be interested in exploring seated Yoga, learning Plenty Road, Preston
more about pain management, having a mini-
massage, or trying out the latest scooters and Booking Form
wheelchairs. There will be something for everyone Please return the booking form opposite with payment
(see timetable opposite). to confirm your attendance by Friday 2nd October
and/or refer any enquiries to:
Mary-ann Liethof
Polio Day is also a time to catch up with Polio Network Victoria – Independence Australia
friends, enjoy lunch and refreshments, and view 208 Wellington Street, Collingwood, 3066
the displays. Please come along and help us Ph: (03) 9418 0411
celebrate Polio Day 2009! Mob: 0425 785 871
Fax: 1300 704 451
Email: polio@independenceaustralia.com
BODY MIND SPIRIT

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

12.40–1.40pm Lunch / Social / Displays


s Catch up with old and new friends s Polio Roll Call display
s Watch PPS: Shades of Grey film s Variety of displays

10 Polio Perspectives Spring 2009


1.40–3.10pm Health and Wellness Try Day Activities & Sessions BODY MIND SPIRIT
1.40 - 3.10pm Pain Dr Stephen de Graaff ½ Grevillea Room
Cause & Management Medical Pain Specialist, Epworth Rehabilitation Seats 150
Full 1½ hour interactive workshop Dr Andrew Sinclair
Health Psychologist, Independence Australia

1.40–3.10pm Write Your Own Story Katherine Ross Studio Room


Full 1½ hour interactive workshop Journalist and Editor Seats 70

1.40–2.20pm Seated Yoga & Meditation Trisha Jones Waratah Room


or 2 x 40 minute sessions Chiro Yoga Seats 30
2.30–3.10pm

1.40–2.20pm Exercise Options Simon Mathieson ½ Grevillea Room


40 mins practical session Physiotherapist, Polio Services Victoria Seats 150

2.30–3.10pm Learn to play Boccia Bocce Victoria ½ Grevillea Room


40 mins practical seated and adapted Seats 150
Bocce session

1.40–3.10pm Explore Mobility Aids & Equipment Mobility Plus Foyer


1½ hour ongoing exploration

1.40–3.10pm How to Maximise Independence Stephen Hughes Foyer


1½ hour ongoing discussion Orthotist, Polio Services Victoria
Margaret Petkoff
Occupational Therapist, Polio Services Victoria

1.40–3.10pm Introduction to the Internet TBA Foyer


1½ hour ongoing session

1.40–3.10pm Mini Seated Massage Sessions Myotherapy Students Acacia Room


15 mins ongoing sessions Kangan Batman TAFE Seats 120

3.15–3.30pm RETURN TO GREVILLEA ROOM FOR DOOR PRIZE DRAW & CONCLUSION

BOOKING FORM Payment details


Name/s 1. Enclosed is my cheque/money order for $10.00 per person made
payable to Independence Australia for $______________________
please 2.
print or please debit my:
3.
… Visa … MasterCard Expiry Date: /
4. Card No. Account Number: 30 09 1026

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: $

Polio Perspectives Spring 2009 11


Knox-Yarra Ranges Polio Support Group Contacts
Polio Support Group
Ballarat Post Polio Support Group Inc Mornington Peninsula Post Polio
Meeting: 1st Wed in February, Support Group
then bi-monthly Meeting: 2nd Sat of every month
Noel Robertson ph: 5332 3172 Dennis &
Margaret Tuddenham ph: 5335 6702 Deirdre Lloyd ph: 5974 3495
email: mt@netconnect.com.au email: ddlloyd@aapt.net.au
Coral Rumler ph: 5342 0629
Northern Region Post Polio Support
Bairnsdale Post Polio Support Group Group Inc (Coburg)
Meeting: 1st Tue in February, then Meeting: 1st Sat of every month
bi-monthly Rosslyn Pickhaver ph: 9386 0413
Margaret Griffiths ph: 5156 7646 Jo McKenna ph: 9308 8440
email: d-mgriffiths@datafast.net.au email: rosslynp@tadaust.org.au
Bayside Post Polio Support Group Sale Polio Support Group
(Hampton) Meeting: 1st Fri in February,
Meeting: 1st Thu of every month then bi-monthly
Shirley Glance ph: 9592 8212 Kathy Glover ph: 5144 3443
Members of the Knox-Yarra Ranges Polio Support Email: howshirl@optusnet.com.au email: bastian@dcsi.net.au
Group shared breakfast with Peter Maldon from Peter Willcocks ph: 9578 5953
Shepparton Post Polio Support
Boronia Rotary Club, on Sunday 19th July. Bendigo Post Polio Support Group Group
Peter presented the convenor, Joan Smith with a Meeting: 3rd Sat in February, Ring Group Contact
then bi-monthly Rhonda White ph: 5832 3100
cheque for $600 to assist with the publication of a
Bob & Dawn Colbourne ph:5443 8161 email: Rhonda.White@gvhealth.org.au
book ‘The Calliper Kids’. The group has compiled a
collection of their life stories about living with polio Eastern Region Polio Support South Eastern Region Polio Support
and the new effects in their lives as they age. The Group Inc (Box Hill) Group (Springvale)
Meeting: 3rd Sat of every month Meeting: 2nd Sat of every month
book will be provided free to all medical practices, Janice Gordon ph: 9874 5363 Lyn Bates ph: 9546 5497
aged care providers and libraries in the area. Tricia Malowney ph: 0400 640 624 email: lyn_bates@bigpond.com
Further information is available from Joan Smith Email: polioeast@gmail.com
Traralgon Post Polio Support Group
on 9756 6383. s Echuca Post Polio Support Group Meeting: 3rd Thu in February, then
Ring Group Contact bi-monthly
Di Lauder ph: 5859 6311 Pauline Corrigan ph: 0424 714 720
Email: di_lauder@yahoo.com.au email: pollyc5@bigpond.com
Polio Services Victoria Helen Murray ph: 5482 2132
Warrnambool Polio Support
Clinics for 2009 Geelong Polio Support Group
Meeting: 1st Mon of every month
Group Inc.
Meeting: 4th Tue of every month
PROVISIONAL CALENDAR – SUBJECT TO CHANGE DUE TO Winnie Teo ph: 0408 599 775 Bill Hill-Peters ph: 5561 3980
AVAILABILITY OF REGIONAL CLINICAL CONSULTING ROOMS. Neil Winter ph: 5241 9591 Anne Clapham ph: 5562 5685
email: teo_express@yahoo.com.au email: anne.clapham@yahoo.com
PSV – PH 9288 3900 Hume Polio Self Help Group Wimmera Polio Support Group
(Wangaratta) (Horsham)
Metropolitan Meeting: 2nd Saturday of Meeting: 1st Sat in March, then
All metropolitan clinics are held on WEDNESDAY every month quarterly
from 10am – 4:30pm Margaret Goodman ph: 5752 1347 Gordon Reynolds ph: 5382 7303
Harry Wilkinson ph: 5722 1472
L September 9 L November 18 email: hagd@tadaust.org.au
L October 7, 21 L December 2, 16
Knox-Yarra Ranges Polio Support
Regional Group (The Basin)
Meeting: 2nd Sat of every month
L Leongatha Wednesday 23 September Joan Smith ph: 9756 6383
L Warrnambool Wednesday 4 November Marlene Wookey ph: 9758 2232
email: joansgra@bigpond.com

Polio Network Victoria – 2009 Support Group Visits


Support Group Date Support Group Date
Knox-Yarra Ranges Saturday 14 February South Eastern (Springvale) Saturday 11 July
Echuca/Shepparton (joint meeting) Thursday 12 March Warrnambool Tuesday 28 July
Mornington Peninsula Saturday 14 March Ballarat Wednesday 5 August
Bairnsdale Tuesday 5 May Hume (Wangaratta) Saturday 8 August
Bayside (Hampton) Thursday 7 May Wimmera (Horsham) Saturday 5 September
Geelong Monday 1 June Eastern (Box Hill) Saturday 19 September
Northern (Coburg) Saturday 6 June Sale Friday 2 October
Bendigo Saturday 20 June Traralgon Tuesday 27 October

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