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POST - POLIO NETWORK (NSW) INC.
N E W S L E T T E R #50
Editor: Gillian Thomas PO
Box 888 Kensington
Email: gillian@post-polionetwork.org.au NSW
AUSTRALIA 1465
Website: www.post-polionetwork.org.au Phone
No: (02) 9663 2402
President's Corner Gillian
Thomas
Welcome to the 50th
edition of the Network's Newsletter. This is a significant milestone
for any community organisation to reach, and the Network which operates solely
on volunteer labour is very proud to have maintained its Newsletter production
over 13 years, with the first issue being published in November 1988. The fiftieth
issue is a bonus one, to bring members up-to-date with recent events and upcoming
activities to the end of the year.
Members who were present at the Seminar held on 22 September
learned that the Seminar series to be presented by Dr Halstead in December had
become uncertain following the terrorist attacks in America. Dr Halstead lives
with his family in Washington, one of the areas most affected. Following the
Seminar, I spoke at length with Dr Halstead in America. He confirmed that both
he and his wife, Dr Jessica Sheer, were having second thoughts about the air
travel required to come to Australia from the east coast of America. They also
have a nine-year-old son and were concerned for his safety. Following our conversation,
Dr Halstead again discussed the matter with his wife. He later emailed me to
advise that their final decision was to cancel their proposed trip. He is very
sorry to have let us down but has left the door open for a future visit. We
will keep in touch with him to see what may be feasible during the second half
of 2002.
Over the last couple of weeks the Committee has been working
hard to ensure that the Mini-Conference scheduled for 16 December still goes
ahead. We are very pleased to announce that Rehabilitation Consultant Dr Stephen
de Graaff, who practices in Melbourne, has accepted our invitation to speak
(a profile of Dr de Graaff appears on page 3).
It has also been decided to hold our Annual General Meeting
on 16 December (rather than on 15 December as previously advertised). We are
honoured that Dr de Graaff will stay with us for the AGM and for our Celebration
of Volunteers. The full program for the day is given on page 2. Please support
the Mini-Conference and return the Registration Form as soon as possible.
The funding we received from the Department of Family
and Community Services' International Year of Volunteers grants will
assist the Network's Support Group Conveners to attend the Mini-Conference and
AGM, as well as giving them the opportunity to meet as a group with the Support
Group Co-ordinator, Neil von Schill, and to learn from each other.
With the change of plans for December we've also had to
rethink the timing of the raffle, although its purpose as a fund-raiser for
future Conferences has not changed. It has been decided to defer the drawing
of the raffle until Dr Marcia Falconer from Canada is with us in May 2002. As
a result the tickets will now be sent out in February.
There are a lot of activities planned over the next couple
of months. The Committee hopes that members will give their support to these
activities and to the Network where able, and we look forward to catching up
with existing and new members alike soon. All familiar features will return
in the next issue of Network News, including Polio Particles;
a review of a new book Post-Polio Syndrome: A Guide for Polio Survivors and
their Families by Julie Silver MD, director of the International Center
for Polio in Framingham, Massachusetts; Support Group News; and our feature
article on orthotic care for polio survivors. Look out for Network News,
together with the 2000/2001 Annual Report, in your letterboxes towards the end
of November.
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 Stephen de Graaff
Dr De Graaff is a Consultant Physician in Rehabilitation
Medicine. He is currently Chief of Rehabilitation Medicine at Cedar Court Healthsouth
in Camberwell Victoria, and Head of the Neurological Rehabilitation Unit at
Caulfield General Medical Centre. Dr de Graaff is Chairman of the Board of Continuing
Education within the Australasian Faculty of Rehabilitation Medicine, past Chairperson
of the Victorian Branch of the Australasian Faculty of Rehabilitation Medicine,
and member of the Executive of the Australasian Faculty of Rehabilitation Medicine.
Dr de Graaff's interests include neurological rehabilitation and musculoskeletal
rehabilitation pain management in the areas of stroke, acquired brain injury,
multiple sclerosis and polio. Dr de Graaff has a particular interest in combining
the neurological and musculoskeletal management of polio survivors.
I Didn't Have Polio - Did I ?
Marcia Falconer, PhD
The gremlins were hard at work in the last Newsletter
(Issue 49, August 2001), and unfortunately Dr Marcia Falconer's authorship of
the above-named article which appeared on pages 11 to 13 was inadvertently omitted,
together with the introductory paragraphs below. My sincere apologies to Dr
Falconer for this omission. Don't forget that Marcia will be presenting a number
of topics at our one-day Mini-Conference on 18 May 2002.
Regular readers will remember that in Issue 40 of the
Newsletter, February 1999, we published a paper co-authored by Dr Marcia
Falconer, entitled Non-Paralytic Polio and Post-Polio Syndrome. When
we recently decided to reprint an article by Dr EG Dowsett The Late Effects
of ME – Can They Be Distinguished From The Post-Polio Syndrome? we
asked Marcia if she would write an article especially for us with her viewpoint
on the matters raised in Dr Dowsett's article. Marcia readily agreed and soon
sent her response, I Didn't Have Polio – Did I? When forwarding
it, she noted that Dr Dowsett's article is quite scientific, and so Marcia decided
to write a more personal, non-scientific article for members. As she said, “I
could write a scientific article on enteroviruses, but I thought that might
be a bit too much, sort of a double whammy, for the general reader to take in
all at once”.
Marcia Falconer contracted non-paralytic polio as a child
in 1949. She graduated with a BSc in biology from Simmons College, Boston, Massachusetts
in 1964, and received post-graduate degrees in plant cell biology (Carleton
University, Ottawa, 1985) and neuronal cell biology (University of Ottawa, Ottawa,
1990). Marcia has spent many years researching cell biology, and been published
in numerous scientific journals. In 1998 in partnership with other scientists
she formed a biotechnology company, BioSoma where she is the scientist in charge
of cell biology and animal research. Marcia received a diagnosis of “probable
PPS” in 1997 and now works half time. Reprint/publication requests for
I Didn't Have Polio – Did I? should be directed to: Dr Marcia Falconer,
33 Abingdon Drive, Nepean, Ontario, Canada K2H 7M5, or by email to <ddf@sce.carleton.ca>.
Bowlers on the Central Coast - Correction
Also in Newsletter Issue 49, I published an item
about bowlers with disabilities who enjoy a social outing and exercise at the
Toukley RSL Bowling Club on the fourth Friday of each month (February to November).
The bowler in the accompanying photograph was incorrectly stated to be member
Brian Nash who helps organises the event. Brian has advised me that he is actually
the person handing the bowls to the player in the wheelchair. Brian also tells
me that “We have over a hundred bowlers from the Central Coast and up to
Swansea that attend this Friday event.” If you'd like to join in, please
contact Brian on 0412 204 945 for more information.
Reminder ! Join us on Saturday 17 November 2001
We are fortunate that the Federal Election will not interfere
with our plans to visit the home of the Sisterhood of Mary at 30 Taylor Place,
Theresa Park (near Camden) for a picnic and social get-together.
There is plenty of parking at Theresa Park, and there
are gentle pathways all around making it very accessible for those with walking
difficulties, and for wheelchair users. You should plan to arrive for morning
tea (around 10:30 am), and bring your own picnic lunch. Tea, coffee, boiling
water, and cold drinks will be provided by the Sisters.
After morning tea Sister Diadema will take us all on a
tour of her home, and show us over the print shop, gardens, chapel, and other
points of interest. Lunch time is usually leisurely, with free time for
wandering around the grounds, or for further questions.
Please join us for this all too rare opportunity to meet
with other members in a social setting. To help the Sisters prepare for our
visit, please let Alice (02) 9747 4694 know before 7 November if you
will be coming along. The Committee is hiring an ex-Olympics mini-bus which
seats 10 as well as carrying 2 people in their wheelchairs. This will enable
some members to join us who would otherwise be unable to attend. As seats are
limited, please ring Alice as soon as possible for more information if you would
like to travel in the bus.
How to find
Canaan of God's Comfort, Evangelical Sisterhood of Mary
If coming from Liverpool, take right hand
turn after the “Crossroads” and follow the Camden Valley Way.
Turn right onto Cobbitty Road. At the T-junction
turn left onto The Northern Road and after approximately 100 mt
turn right onto the continuation of Cobbitty Road.
Follow Cobbitty Road through the township of Cobbitty and
bear left at the traffic island. After the bridge, at T-junction, turn right onto
Werombi Road.
After 2-3 km, just before Big Gully Creek Bridge,
turn right into Taylor Place. There is a big sign underneath the
“Big Gully Creek” sign, saying “Evangelical Sisters of Mary”
to ensure you don't miss the turn-off to Taylor Place which is a no-through street,
opposite Nectarbrook Stud.)
Australian Foundation For Disabled
Celebrates 50 Years
The Australian Foundation For Disabled began as The Poliomyelitis
Society in 1952 offering care and support to polio survivors and their families.
The Salk vaccine effectively reduced the numbers of polio
cases and the Society opened its doors to encompass people with all types of disability.
Since its beginning in 1952, the Society has undergone
many name changes and broadened its service from offering only accommodation,
employment and welfare support to include Post-School Option and Day Programs,
Training, Recreation Sensory Room and Garden.
Today Australian Foundation For Disabled is responsible
for 600 people with disability over an area spread from Newcastle to Richmond.
2002 will mark the 50th Anniversary of the organisation
and a number of activities will be held in celebration.
The Foundation is anxious to contact former members or the
Poliomyelitis Society, especially those who joined in the 50s, 60s and 70s.
If you were a member, or a friend or a relative of a member,
they would be very grateful if you would contact: Maureen
Turner
Fundraising Manager
Australian Foundation For Disabled
PO Box 453
Penrith NSW 2751
Phone: (02) 4777 4250
Support Group News
Neil von Schill Phone:
(02) 6025 6169
Support Group Co-ordinator Fax:
(02) 6025 5194
This is the final call to all members in Sydney's Eastern
Suburbs to come along to the Network's public meeting which is aiming to establish
a Post-Polio Support Group for the benefit of members in the area. Eastern Suburbs'
members have already received personal invitations. Those in the region who have
previously enquired about membership but have not yet joined have also been invited.
In an attempt to reach polio survivors living in the area who have previously
not been aware of the Network, the meeting has also been advertised in the local
Southern Courier newspaper.
The meeting will be held at South Sydney Junior Rugby League
Club, 558A Anzac Parade, Kingsford on Sunday 28 October 2001 commencing at 2:00
pm, and will be followed by afternoon tea (don't forget that daylight saving commences
this weekend). Please join us in the Club Auditorium on the second floor which
can be reached by lift for people using wheelchairs or those who are less mobile.
Attendees at the meeting will learn about the Network's
support group structure, and how participating in a local support group can help
polio survivors and their families better understand and manage the late effects
of polio. Please help make the meeting a success - register your interest with
Alice (02) 9747 4694 TODAY.
The Volunteer Spirit
The Network has recently become a member of www.ourcommunity.com.au
which is an Internet website offering many resources to Australia's community
and non-profit organisations. An item in their recent Newsletter about volunteers
and funding for community organisations struck a chord with me. The following
excerpts are provided courtesy of www.ourcommunity.com.au.
In a speech in Melbourne on August 15, the Federal Treasurer,
Mr Peter Costello, called on all Australians to get the “volunteer”
spirit.
Mr Costello said Government couldn't solve all the country's
ills and said it would be a better community if people just got in there and volunteered
to help out in their local community groups.
While we applaud Mr Costello's support for the volunteer
sector, Ourcommunity.com.au did take issue with the view that volunteers alone
could solve all the financial problems faced by non-profit groups.
Here is the media release that we put out in response to
the Treasurer's comments:
Ourcommunity calls on Mr Costello to put his money
where his mouth is
The Federal Treasurer, Mr Peter Costello, was correct to
call for a greater Australian spirit of volunteerism but was way off the mark
if he thought volunteer groups could pay their bills and survive on public spirit
alone.
“It is great to hear the Treasurer supporting neighbourhood
community groups and a greater public involvement but these groups can't do it
alone without Government support, no matter if they have one volunteer or 1000”,
Ms Rhonda Galbally, CEO of ourcommunity.com.au, an online resource for Australia's
700,000 community groups said today.
“It is not always lack of volunteers that holds community
groups back. It is lack of money.
“No matter how many volunteers groups have, you still
need funding to be able to provide the valuable community services, whether that
is putting a sporting team on the field, providing meals or a home for the disadvantaged
or running a rural town fair committee.
“The nineties were a disaster for the community sector
with Governments of all persuasions cutting back funding to all forms of community
groups.”
……
“Volunteer groups are not just about charity or soup
kitchens. They are about setting up a social support system that hopefully prevents
people from getting to the stage where they need serious help.”
Help Wanted – What Can You Do For
The Network?
While we are on the subject of volunteers and the lack of
funding for organisations such as ours, it is timely to remind members that the
Network is only able to provide the range of services it does because of the generosity
of its members and the commitment of its volunteers who unselfishly give countless
hours to provide these services. Predominantly, our volunteers have been working
for the Network for many years. As many of them experience increasing polio disability
they are finding it harder to take on additional duties as the Network continues
to grow. So, if you are wondering not what the Network can do for you, but what
you can do for the Network, please read on.
Post-Polio Awareness Week : 1 – 7 November
Post-Polio Awareness Week is our major publicity effort
each year to raise the awareness of polio survivors, health professionals and
the general community about the late effects of polio and their impact on our
lives and those of our families. Again this year we are including with this Newsletter
a colourful poster promoting the Week. We ask all members to put the poster up
somewhere in your local community. If you are willing to talk to local media about
your polio story and the work of the Network, please contact Alice on (02) 9747
4694 for a copy of the Network's Media Release and for any background information
desired.
Website Editorial Team
The Management Committee and the Network's webmaster, Tony
Marturano, wish to set up a Website Editorial Team to assist Tony to identify
appropriate content for our website and prepare documents for inclusion on the
site. Over several years Tony has spent untold volunteer hours developing our
website to its current high standard. Now he is seeking some assistance to help
him keep the site up-to-date, relevant, and of continuing interest to members
and health professionals alike, as well as polio survivors around the world. We
are therefore requesting input from members with internet access, computer and
writing skills, enthusiasm, and a little spare time they are willing to give to
the Network. The aim is to get together a group of members who, in collaboration
with Tony and a Management Committee representative, will not only help develop
the website but provide a quality assurance function to ensure the quality of
information included. It is anticipated that an Internet mail group will be set
up for the interested members to facilitate communication. Helping the Network
in this way can be done in the comfort of members' own homes, so limited mobility
should not prove a barrier. If you would like to participate in this exciting
initiative, please send an email to <gillian@post-polionetwork.org.au> to
register your interest, or for more information.
Wanted – Roving Reporters
Recently I have been asked why the Newsletter does
not include summaries of Network Seminars for the benefit of those members who,
because of disability or distance (or indeed both), are unable to attend. As Editor,
I appreciate the value of such reports, and would love to include them. They are
certainly not omitted for reasons of space; rather, articles can only be included
in the Newsletter if someone first writes them. For your information, it
already takes a week's solid work to put together each issue of the Newsletter.
This effort is predominantly put in by the Editor, with valued input from Management
Committee members, particularly Mary Westbrook who writes at least one article
for each issue. This time does not include the day's work to print address labels
and for the mail-out team to prepare around 1,000 copies for mailing. Help from
members who regularly attend our quarterly Seminars is needed if Seminar reports
are to be included in upcoming Newsletters. If you are prepared to write
an overview of the Seminar topic for inclusion in the subsequent Newsletter,
could you please contact the Editor. If a few people offer their help, Seminar
reports should become a regular feature of the Newsletter. It is probably
also timely to remind members that Seminars are recorded on audio tape where possible.
Please contact the Network for details on obtaining copies of these tapes.
Keep Post-Polio Syndrome on the Political Agenda
With the Federal election now set for 10 November, it's
more important than ever to keep post-polio on the political agenda. Please take
the time to question the politicians in your local area about what they know of
the late effects of polio and, should they be elected, what they are going to
do to address the needs of polio survivors. If the politicians know nothing, offer
to educate them on the important issues facing us – contact the Network for
assistance if necessary. The more members that speak out, the louder our voice
will become, and the greater chance we will have of making our needs known. Members
who wrote or spoke to their local members over the last twelve months certainly
helped to raise the profile of the late effects of polio and of the Network and
we are very grateful for their efforts. The election provides a perfect vehicle
for further publicising our needs – please don't let the opportunity pass
you by.
Post-Polio Post .
+ . +
. + .
+
Member and regular correspondent Ian McKenzie (who recently moved to Kingscliff)
put pen to paper soon after receiving and reading the last issue of Network News.
He wrote: “Thanks indeed for the bumper issue of the Newsletter. Once again
it is full of interest and I have read it from cover to cover. I feel a long way
from “home” and sad that I can't attend the Northcott seminar. One of
my main concerns in moving away from Sydney was the distance from orthotic services.
And as my knee becomes a bit of a bother I was very interested in David Carter's
report on his hip replacement. I'm sure I couldn't manage as near as well as he
did.”
With his letter Ian included the following Letter
to the Editor. Thank you, Ian, for taking the trouble to give some feedback on
articles in Network News. I encourage more members to follow his lead and tell
of their experiences of ageing with polio.
I would think Shirley Whitcroft's presentation to Rotary (Newsletter, August
2001) conveyed very well the experience of many who contracted polio - certainly
it mirrored mine at about the same time as Mrs Whitcroft's, and evoked memories
of the initial high fever and delirium.
And it highlights the thing we all face: the loss of hard-won
independence. This raises the important question of accommodation and support
in the later years of life.
Being single and having enjoyed many years of living in
my own unit, housekeeping and in employment, I have had to accept that, as the
prospect of change from crutches to wheelchair looms, this is no longer sensible
even if it were possible. And so, on retirement from the workforce came the decision:
to seek help to remain “independent” in my unit or move to a residential
care facility ?
I decided that the first course could lead not to independence
but housebound isolation - and further decisions later on. So I looked for other
accommodation, at first for something between full self-care and assisted living.
But this search was not successful and so I looked at residential care facilities
with ease of access being the priority. To cut short a very long story, I have
opted for a facility which has level access and covered walkways (bliss!) and
an open, pleasant outlook. It is near my sister's home and she has helped me set
up the bed/sitter and wheelchair-friendly en suite to best advantage.
Obviously the biggest drawback is the environment of older
residents. But with the caring concern of an understanding administrator (who
is aware of the non-availability of residential care for the “younger”
disabled) I am coping well enough and have privacy and a measure of independence.
No doubt others have chosen different solutions to this
problem. Perhaps they will share their experiences through the Newsletter.