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POST - POLIO NETWORK (NSW) INC.
N E W S L E T T E R #54
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 regular readers and new members to another
bumper issue of Network News.
I am very pleased to report that the Mini-Conference held
on 18 May was a great success, attracting more than 100 attendees. Read a preliminary
report on the Mini-Conference and the Support Group Convenors' Workshop on page
6.
Our Raffle in support of this and future conferences was
also very successful, and brought in funds of over $4,700. The Raffle was drawn
at the Mini-Conference and you'll find details of the prizes and lucky winners
on page 22. Our sincere
thanks to everyone who supported the Raffle, and to those who made donations
totalling nearly $3,000 in support of our conference programs.
Several years ago Mary Westbrook investigated the strategies
Australians with late effects from polio use to cope with their post-polio problems.
She looked at the lifestyle changes, personal and social strategies survivors
use and how helpful they have found them to be. Considerable research has shown
that having support from others significantly reduces the stress people experience
in difficult life situations. Margaret Campbell found this was true of women
with severe late effects of polio. Those with supportive families were much
less depressed and more accepting of their disabilities than were women who
lacked support. Mary found that survivors are extremely reluctant to ask for
help. Only 39% of the polios in her survey had ever asked family members for
practical help and 19% had asked friends for help. When they did ask for help
only just over half of those who did so found it very helpful. More survivors
were able to talk about their post-polio problems; 75% had talked with family
and 74% with friends. However the majority of those that talked did not find
it helped them very much. Only 39% who talked to family and a mere 19% who spoke
to friends said it was very helpful. Mary wrote that “Factors contributing
to survivors' reluctance to talk about their disability include a strong social
taboo about discussing one's disability and the discomfort such talk arouses
in others. Most survivors were hospitalised for long periods of time when they
contracted polio. Children were usually only permitted one visit each week.
Exposure to isolation wards, paralysis, pain, frightening procedures and equipment,
and care administered by distant and at times abusive staff has left many survivors
with profound, though often unacknowledged, fears of abandonment. They tend
to display a false self sufficiency and have little empathy for themselves.
Many survivors require help to increase the social support in their lives”.
Our upcoming Seminar on 31 August hopes to provide such help. See page 2 for
more details.
The back page of this Network News again highlights
this year's upcoming activities. Please note the dates in your diaries. You
will see that we are holding two social events this year. First there is a play
Murder in the Sydney Opera House on 3 August (see enclosed flyer). Second,
we are holding a reunion of polio survivors and hospital nurses. Whatever hospital
you were in, you are most welcome to attend this reunion luncheon on 25 October
at the Burwood RSL. For $25 you will enjoy a buffet lunch and a rare opportunity
to swap stories about your polio days. Invitations will be sent out early in
September. Please call Doug Sutherland on (02) 9747 2055 for more information.
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.
Living with Polio – A Family Affair
A seminar for you AND the important people in your life
Date: Saturday
31 August 2002
Adam McLean, Counselling Co-ordinator
of Carers NSW Inc, is our guest presenter. Adam's talk will help us all
to understand how polio's late effects can influence our relationships. Reduced
mobility and increasing difficulty with undertaking normal daily tasks can be
hard for all family members, not only the polio survivor, to come to terms with.
Denial that it is happening is not the answer. Adam will explore issues such as
breaking the silence, loss and anxiety that surrounds polio survivors, their partners
and family members as they experience the impact of change for themselves and
their relationships. As usual, the Seminar will have an interactive format –
questions and discussion are welcome and encouraged.
As Dr Mary Westbrook, Seminar Co-ordinator, puts it: “This
Seminar is for members AND for those who care for and about them. The Seminar
aims at increasing understanding and improving communication - it will help both
groups gain a heightened appreciation of each other's viewpoints and problems.
Issues that are difficult to talk about will be aired and new, and sometimes surprising,
insights will be gained by both groups.”
Committee Member Anne Buchanan is married to a polio survivor.
She says: “Being a member of Carers NSW Inc I am pleased to see that Adam
McLean will be the speaker at our August seminar. I have, in fact, completed
a course conducted by Adam on behalf of Carers, and certainly found it most beneficial.
I hope that polio survivors and their families alike will take this opportunity
to come along and learn more about each other.”
We look forward to seeing everyone there. If this is
the first Seminar you have attended, please be sure to introduce yourself to a
Committee member. Don't forget that afternoon tea after the Seminar is a great
opportunity to catch up with friends.
Dr Henry Writes …
Henry Holland MD, is a polio survivor, a board certified
psychiatrist and an associate clinical professor of psychiatry at the Medical
College of Virginia who has led the Central Virginia PPS (Post-Polio Syndrome)
Support Group for some years.
A series of Dr Holland's articles appears on the Internet
on the Lincolnshire Post-Polio Network's Web site www.ott.zynet.co.uk/polio/lincolnshire/
under the title “Dr Henry Writes ...”. Dr Holland has generously given
us permission to reproduce his articles in our Newsletter. Dr Holland's permission
must be sought to reprint any items published in this series; he can be contacted
by email at Henry4FDR@aol.com.
The following article was originally published in the
Central Virginia PPS Support Group's newsletter The
Deja View in January 1999. Dr Holland's thoughts on polio spouses are particularly
relevant considering the topic of our Seminar on 31 August. We hope that many
polio spouses will come along to the Seminar to hear our speaker's insights –
remember, the Network exists not only for polio survivors but also for those who
care for and about them.
Dr Henry writes about Polio Spouses
Henry Holland MD
Richmond, Virginia, USA
January 1999
Eleanor Roosevelt is probably the most famous polio spouse of this century. She
was born into an aristocratic family on November 7, 1884. However, emotional losses
and low self-esteem plagued her developmental years. She was the oldest child
and only daughter of Elliott Roosevelt, President Theodore Roosevelt's brother,
and his beautiful and vivacious wife, Anna Livingston Ludlow Hall. At age two
and a half, she was crossing the Atlantic with her parents when their ship was
involved in a collision. The terror of being lowered from on high to a lifeboat
left her with a fear of heights and the water. As a young child, her mother called
her “Granny” because she was so serious and mature. When she was six,
her mother said, “You have no looks, so see to it that you have good manners”.
As a result, Eleanor tried to be dutiful, compliant, obedient, responsible, and
useful, but she was also independent, goal directed, and willful.
Death left her an orphan by age ten. She had two younger
brothers. One of them, Elliott, died at age four from scarlet fever. When she
was eight, her mother died from diphtheria. Her father had a history of alcoholism
and chronic depression. He was not awarded custody of Eleanor after her mother's
death. Eleanor went to live with her maternal grandmother in Manhattan. Two years
later, her father died from the consequences of alcoholism. She stayed with her
grandmother for seven years. During this time, she grew to be a tall, but rather
awkward and self-conscious teenager. She was a loner and an outsider. At the age
of fifteen, her grandmother sent her to the Allenswood boarding school in England.
At this school, Eleanor came under the influence of the headmistress, Mademoiselle
Marie Souvestre. This school was most progressive for the Victorian nineties.
The daughters of England's more liberal leaders attended this school. Eleanor
excelled at Allenswood for three years. She became more self confident, versatile,
and a well loved young woman. At age eighteen, she returned to New York, involved
herself in social work causes, made her debut in society at her grandmother's
insistence, and soon met Franklin.
In August 1921, she became a polio spouse. During her husband's acute illness,
she was his bedside nurse and performed many necessary duties such as attending
to his urinary catherizations. Over the next several years, despite her mother
in law's opposition, she kept the hope alive in Franklin's mind that he could
return to politics. Franklin did become the four times elected President of the
United States. During this time, Eleanor became his conscience, promoting progressive
social reform. She became his legs and traveled throughout the world as his “ambassador
of hope”. She was a person ahead of her time. She was a feminist. She was
compassionate and idealistic. She was a friend to the disenfranchised. She was
an assertive and hopeful voice for the hungry, the unemployed, and African Americans.
She became a writer, a teacher, lecturer, and voluntary ambassador.
When asked about her husband's polio, she would say his
polio was a “blessing in disguise”. Some had argued that FDR had always
been a powerful and compassionate man; she believed that Franklin's struggle with
polio “gave him a strength and courage he had not had before. He had to think
out the fundamentals of living and learn the greatest of all lessons - infinite
patience and never ending persistence”.
Eleanor appeared on the Edward R Murrow TV Show, “This
I Believe”. In response to a question about her life, she stated, “You
have to accept whatever comes, and the only important thing is that you meet it
with courage and with the best you have to give”.
In my opinion, Eleanor Roosevelt's perceptions as a polio
spouse are astute and wise. As polio survivors, most of us learned long ago about
the value of patience, persistence, and trying to think through the fundamentals
of living. For many of us, polio brought a precocious understanding of the perils
of life. If we did not learn and exercise these lessons years ago, we certainly
need to exercise them now with the realities of Post-Polio Syndrome (PPS).
There are a number of polio spouses who are quite active
in our post-polio support group. From my observation, these spouses fully represent
individuals who have learned “to accept whatever comes” and have met
adversity with “courage and the best they have to give”. No marriage
is all bliss and joy. The realities of polio and now PPS can stress the best of
marriages. Based on last year's survey of our group, 70% of our members are married.
51% felt that the development of PPS had had some impact on their families. The
changes that might result in a marriage relationship as a result of PPS can be
adverse, or can be part of the “for better or worse, in sickness and in health”
definition of a committed marriage.
I think that polio spouses are often forgotten and overlooked
heroes. For many of us, they are “gofers”. They run errands, pick up
things, and help with many details of daily living. They also get tired and moody,
and have bodily aches and pains. Usually, they say “yes” more often
than “no” to us, are our thoughtful personal advocates, and our loving
protectors. Marriage relationships are traditionally complementary, as each spouse
is expected to manage certain tasks toward the maintenance of a home and the raising
of children. The invasion of PPS may alter the dynamics of that complement. As
a consequence, the polio spouse may feel somewhat abandoned, needed more than
loved, and less valued. This is more likely to occur when the PPSer is having
greater difficulty accepting and adjusting to a life with PPS. When the PPSer
is more anxious, fearful, depressed and uncommunicative, the polio spouse may
be on the receiving end of irritability, complaining, and subtle rejection. Both
marriage partners may well understand this process, but feel helpless in changing
it. Meaningful communication is the key to working through the changes that have
occurred and in establishing a new and lasting complementary relationship. If
this level of communication is not possible, professional help may be an excellent
next step.
As a first lady, Eleanor Roosevelt made a positive impact on the lives of many
people. As a polio spouse, she must have felt the anger, fear, and uncertainty
brought to their lives by her husband's polio. I feel that many polio spouses
have felt and may still feel the anger, fear, and uncertainty that PPS has brought.
There may be no brilliant dynamic psychotherapeutic models to resolve the realities
of the impact of PPS on a marriage. Eleanor's advice is the best that I have heard.
“You have to accept whatever comes, and the only important
thing is that you meet it with courage and with the best you have to give”.
Cross-Cultural Study of Sleep in Survivors of Polio
Dr Elizabeth Ellis
The University of Sydney, School of Physiotherapy, is very
grateful to the Post–Polio Network (NSW) for its cooperation in this first
ever cross-cultural study of the sleep profiles of survivors of poliomyelitis
in Australia, Canada and New Zealand. The research project looked at the history
of poliomyelitis as well as the current day time function and sleep patterns in
people who have had polio. Sleep patterns were investigated because they are essential
to being able to function well in the day, as well as to general well being and
overall health. Five hundred members of the Post-Polio Network were sent a questionnaire
and asked to volunteer to complete it. Ninety-six pairs of responses were matched
for age and sex and used for this initial analysis. At the Network's Seminar on
2 March 2002, the following findings were presented.
Research Questions and Answers
What is the incidence of disturbed sleep in people with
PPS? And is this different to the normal population matched for age and sex?
The proportion of people classified as having sleep disturbances was greater in
people who had survived poliomyelitis (26%) than in the control group (15%).
What proportion of the disturbed sleep is caused by breathing
disorders? The proportion of people classified as having
sleep disturbances who also had evidence of breathing problems during sleep was
greater in the people who had survived poliomyelitis (20%) than in the control
group (14%).
What proportion of the breathing disorders could be contributed
to by PPS? (ie respiratory muscle dysfunction vs obstructive
sleep apnea). More of the polio group reported to having had breathing problems
than the control group. However, the proportion of people who had breathing problems,
and who had difficulty breathing during sleep, was the same for both groups (4%).
In addition, there was no difference between the polio group and the control group
on the severity of the symptoms of breathing problems in those that had them.
Consequently, less of the sleep disordered breathing could be explained by breathing
problems in the polio group than in the control group.
What factors are strong predictors for disorders in sleep
caused by PPS? The link between disorders of sleep in
polio survivors appears to be more related to their history of polio than any
specific compromise of their respiratory system. Sleep studies may be useful in
the identification of sleep disordered breathing in subjects displaying evidence
of sleep disturbances and would help identify the cause in individuals.
This exciting project is a collaborative effort between
Prof Elizabeth Dean in Canada, Margot Skinner in New Zealand and Dr Elizabeth
Ellis in Sydney. The survey was managed by Ms Helen Papadopoulos who graduated
with Honours from the University of Sydney in May 2002. For further information
please ring Elizabeth Ellis on 0411 032 712.
Mini-Conference 18 May 2002
 |
Our Mini-Conference on 18 May was a great success, with more that 100
people in attendance. Members and friends came from all over the Sydney
Metropolitan area, and from as far afield as Canberra, Orange, Armidale,
Ballina and Albury, north up the coast to Newcastle and south down to Nowra.
Dr Pesi Katrak, Rehabilitation Specialist
from the Prince Henry Hospital, also joined us. An
especial welcome was extended to interstate visitors: Rebecca Round (Tasmanian
Network), Tessa Jupp (Western Australian Network), Jill Pickering (Polio
Network Victoria) and Tori Wilckens (Polio Therapy Services and South Australian
Network). Dr Marcia Falconer's four presentations
were very well received, and even the most polio-knowledgeable members present
learnt something new. A report is under preparation and will appear in the
next Network News. |
Support Group Convenors' Workshop 18 May 2002
Network Convenors at their working lunch. Pictured clockwise
around the table (starting at top left) are: Dorothy Robinson (Wollongong),
Neil von Schill (Albury) (partly obscured), Rosalie Kennedy (Northern
Rivers), Wendy Chaff (Hunter), Dorothy Schünmann (Shoalhaven), Bernie O'Grady
(Blacktown/Blue Mountains), Brian Wilson (ACT), Doug Crocker (Armidale), Eric
Sobel (Eastern Suburbs), Liz Lynes (Upper Blue Mountains – past Convenor),
Bara Tunnington (Central Coast), and Ruth Wyatt (Northside). Neil von Schill,
Support Group Co-ordinator, reports “At the Mini-Conference in Maroubra
in May we held another successful Convenors' Workshop during the luncheon break
with a dozen convenors in attendance from the north, central and southern parts
of the state as well as the metropolitan area. It was a worthwhile gathering
with a very useful exchange of ideas. May I thank all Convenors for their contribution
and for making the effort to attend.”
To Reap the Rewards of Post-Polio Exercise
Sunny Roller, MA
Polio Survivor, Program Manager
University of Michigan Health System
and
Frederick M Maynard, MD
UP Rehabilitation Medicine Associates, PC
Marquette, Michigan
This monograph was first published by the National Center on Physical Activity
and Disability (NCPAD), University of Illinois, Chicago, USA in May 2002. It
is reproduced from their website www.ncpad.org with permission. Modification
or re-publication without NCPAD's prior written permission is strictly prohibited.
This includes, but is not limited to, posting to another Web site. Any requests
for re-publication should be directed to NCPAD via e-mail at ncpad@uic.edu.
In this year, 2002, we know more about exercise for persons who had polio than
we did fifteen years ago. There have been a variety of studies conducted by
superb and caring scientists, along with numerous personal accounts from polio
survivors themselves, which warrant a new way of thinking about exercise.
Exercise is different than physical activity. For the purposes
of this article on exercise, it may be helpful to define these two terms. Exercise
is generally defined as planned, structured and repetitive bodily movement,
whereas physical activity is the movement you do throughout the day. Physical
activity does increase the amount of calories you burn, but unlike exercise,
is not necessarily planned, structured or repetitive motion. One benefit of
exercise can be an improved ability to take part in ongoing daily physical activity.
Whether you have a planned exercise program or simply rely on
day to day physical activity to stay fit, the message to polio survivors today
is “beware of inactivity!” In the 1980s polio survivors across the
nation heard and heeded a strong medical warning about the dangers of doing
exercise, especially too much exercise and/or physical activity, but now post-polio
scientists have qualified their advice. New knowledge tells us that no matter
what our level of disability is, we should be encouraged to value exercise,
enterprising enough to come up with a highly customized plan and enduring enough
to reap the rewards. When it comes to exercise, we need to be smart, not scared!
One woman in our University of Michigan wellness study told us that in the late
1980s she quit exercising completely out of fear of muscle loss, and gained
35 pounds. Dismayed, she joined the 1996 wellness study to find out what she
could do to feel better and it worked! Exercise was put back on her list. She
was guided to be selective and conservative as she designed her weekly plan
for “working out”. She found out that polio survivors need to:
- ØFirst,
gather the best medical literature from post-polio researchers, educators
and clinicians such as Grimby, Agre, Perry, Halstead, Headley, Maynard, Birk,
and Yarnell. They will all say that we must each have a custom-tailored plan
since we were all affected a little differently by the capricious poliovirus.
(See Selected References on Post-Polio Exercise at the end of this paper.)
- ØNext,
find professionals to work with. A well-selected physician and a physical
therapist or exercise physiologist who each know or are willing to learn about
post-polio issues would be most appropriate. There are no specific formulas
for any individual that can be written in an overview article such as this.
You must have one-on-one, in-person evaluation and testing to see what works
and what does not work for you.
- ØThen, together,
literature in hand, establish a plan for exercise.
- ØStart
slowly, recognize limitations along the way, make adjustments in the weekly
activity plan and keep going. Thomas Birk, PhD (1997), recommends a two-month
start up period in which your response to exercise is supervised and monitored
by the professionals you have chosen to work with.
Gather Literature
The best place to start a literature search on post-polio
exercise is to tap the International Polio Network's resources. They have a variety
of the latest articles from the best researchers in the world on this very specialized
topic. They can be reached by calling 314-534-0475 (Ed: USA callers) or
connecting with their website at www.post-polio.org.
You may also want to do a literature search of the medical
journals at your local library. Librarians can help you do a “Medline search”
for pertinent medical publications or you can do one on your own by tapping into
the internet, going to www.medscape.com, then clicking on Medline.
Find Professionals
You need to establish an exercise coaching team. This can
include you, your physician, and a therapist. If you have a post-polio physician
that you trust, he or she is the best person to start with. This physician can
then recommend a physical therapist or exercise physiologist to work with as part
of your new “exercise coaching team”. If you need to first find these
professionals, the journey will be longer since knowledgeable post-polio helping
professionals can be difficult to find or cultivate. Be encouraged to begin your
search however. Remember, if you sense that a professional is not interested in
post-polio issues, move quickly on to find someone who will work with you and
is willing to learn and help. Once again, the International Polio Network in St
Louis, Missouri, can provide you with leads in this search. They publish a national/international
directory of self-identified post-polio health professionals and support groups
whose members know about the best helping professionals in their geographic area.
Establish a Plan of Action
The experts now agree, when it comes to exercise, a polio
survivor doesn't have to do a lot, but one is highly encouraged to do something!
Once you have gathered your exercise team, decide together what type of exercise
is best for you and whether you want to join a group or exercise independently
- or both! The amount of physical activity you do will also need to be addressed
as you develop this action plan.
Maynard and Headley (1999) emphasize that the main focus
of a new exercise program should be on stretching and general aerobic or cardiovascular
conditioning exercises to improve endurance. Strengthening exercise, also called
resistance training, needs to be approached much more cautiously, however, with
a focus on very gradually building up functionally important muscles to a modest
degree.
Ann Swartz, PhD (personal communication, February 28, 2002),
exercise physiologist at the University of Michigan Health System, describes each
of these three types of exercise:
Stretching and Range of Motion Exercise
Why is it important?
Stretching or muscles and joints is important to maximize
and maintain function. For instance, arm circles can help maintain the function
of your shoulders, making it easier for you to reach for something, or move something
out of your way. Preventing tightness in your hips, knees, and ankles will help
maximize your walking ability.
What types of exercises are considered stretching or range of motion?
These include arm circles, wrist circles, shoulder shrugs,
calf stretches, lifting your knee up towards your chest, bending and extending
your knee, knee to chest stretches, back stretches and ankle circles. Many people
also enjoy the movements that are part of Yoga or Tai Chi. The following Yoga
stretching exercise was part of the University of Michigan Wellness for Women
with Polio Workshop and was particularly well received:
The Breathing Tree
- ØStand
or sit erect. Feet apart, body balanced over hips. Arms at sides, palms forward.
- ØAs you inhale raise
your arms slowly up. Stretch up, up.
- ØExhale arms to
starting position.
- ØInhale arms to
starting position.
- ØInhale arms slowly
up. Stretch up, up.
- ØExhale arms out
at shoulder level. Turn head to look at fingertips.
- ØExhale twisting
from the waist toward the direction you are looking.
- ØInhale forward.
Turn head to look at other fingertips.
- ØExhale twisting
from the waist toward the direction you are looking.
- ØInhale head forward
and arms down to starting position.
Cardiovascular Exercise
Why is it important?
Cardiovascular exercise is also known as aerobic exercise.
It is exercise that increases your heart rate and blood flow, and makes you breathe
a little more heavily than you would when performing your daily tasks. There are
numerous benefits, some you may notice, and some you may not. The benefits you
may notice include increased ease of accomplishing your activities of daily living
and such things as getting in and out of the car, or going from place to place,
and an improved mood. Benefits you may not notice include lower blood pressure
levels, improved blood cholesterol levels, and lower blood sugar levels to name
a few.
What types of exercises are considered cardiovascular exercise?
Swimming, biking, and walking are examples of cardiovascular
exercise. Machines such as the elliptical machines (low impact equipment that
combines the movements of walking and stair climbing), stair climbing machines,
rowing machines and a machine called the NuStep are also useful for cardiovascular
or aerobic exercises. Swimming may be the best exercise for polio survivors because
it minimizes mechanical stress on the body. However, you may not have access to
a pool, or may not enjoy swimming. So, do what you enjoy, what feels good, and
what is accessible.
At what intensity should aerobic exercise be performed?
Health professionals will usually recommend a moderate or
low intensity. This means that you should be exercising at a level where your
heart rate increases and you are breathing heavier than you would normally (when
you are performing your daily tasks). If you cannot easily carry on a conversation,
slow it down!
Strength (Resistance) Training
Why is it important?
Strength training, also known as resistance training, improves
muscle strength. When your muscles are stronger, it is easier to carry in your
groceries, take out the garbage, and other tasks of your daily routine.
What types of exercises are considered resistance or
strength?
Any exercises that involve hand-held weights, weight machines,
stretch bands, or even balls are usually strength exercises. These types of exercises,
like the stretching exercises, can involve any muscle of your body - from your
head to your toes.
You may choose to exercise alone or with an “exercise
buddy”. Often, sharing the experience with a friend can be more fun, a chance
to learn from each other and stay motivated. Joining or starting a wellness program
with other polio survivors may also help. Our 1996-1999 study at the University
of Michigan (Tate & Leonard, 2001) of a holistic wellness program for women who
had polio found that the biggest change was in participants' exercise routines
and resultant physical activity. Program participants changed dramatically in
their reported regular participation in vigorous exercise. While prior to their
participation 57% never regularly exercised vigorously and 23% did so often or
routinely, after their participation, only 26% never did and 41% reported exercising
regularly often or routinely. Similarly, program participants demonstrated a marked
improvement in terms of the regularity with which they exercised with moderate
exertion. Prior to the program's onset, 63% stated that they did so three or more
times per week. Following the program's conclusion, 78% of program participants
reported conducting moderate exercise with this regularity. Also, while prior
to the program's onset 42% of participants said they never engaged in stretching
exercises and 23% said that they did routinely, following program participation
only 11% said that they never did stretching exercises; 35% of participants said
that they did them routinely. Six months following the conclusion of the program,
61% of participants said that they had increased their level of physical activity
during the last six months. We also found that exercising vigorously at least
three times per week was associated with improved assessments of depression and
distress.
Whether with a group or on your own, exercise programs can
occur on land or in the water. It is important to do whatever works best for you.
If swimming is not possible, you may want to exercise in your house, at a health
club or gym, or outdoors. Pick an exercise you enjoy, whether it is walking, stretching,
or any other exercise, and begin with small bouts. It is not necessary for you
to perform only one activity. You can combine all your favorites. Also, you do
not have to do the activity all at once. For instance, Tom enjoys biking, stretching
and walking, so his exercise program was as follows:
| Morning: |
Afternoon: |
| 2 minutes stretching |
2 minutes stretching |
| 2-5 minute break |
2-5 minute break |
| 2 minutes walking |
2 minutes walking |
| 2-5 minute break |
2-5 minute break |
| 2 minutes stretching |
2 minutes stretching |
| 2-5 minute break |
2-5 minute break |
| 2 minutes biking |
2 minutes biking |
This is how he began his exercise program, and slowly, over
the course of months, he began to increase the bouts of exercise and decrease
the length of his breaks. It is very important to rest between exercise sessions.
Make sure you rest long enough to fully recover after the exercise; otherwise
you may remain in a constant state of overload, which has negative effects on
function. Incorporating regular rest periods into an exercise routine is called
“interval training”.
Exercising in a warm pool is another way to work out. According to Lauro Halstead
MD, water therapy was the exercise of choice for many persons during their recovery
from the original polio. It is still excellent therapy. Because of the buoyancy
of water, it allows people to do things they can't perform on land. For especially
weak limbs, inflatable cuffs can be used to float an extremity. For other limbs,
water resistance provides a workout that can be fine-tuned to each person's strength.
The principal disadvantages of hydrotherapy are that the temperature may not suit
one's body and it may be difficult to find pools that have lifts (if needed).
Also, the surfaces around pools tend to be slippery and dangerous for anyone with
a tendency to fall.
Aquatic programs for exercise have been recognized as morale
boosting and physically beneficial. An early study by Hoffman and Maynard (1992)
describes a swimming program for polio survivors as having a “therapeutic
effect”. Emphasizing the added benefit of group exercise, the authors go
on to say: “it is of great importance to recognize that perhaps one of the
greatest benefits of a program that brings together individuals who share a common
concern is the emotional support they receive from knowing they are not alone
in their efforts to confront the late effects of polio”. In a more recent
Swedish study by Willen and Sunnerhagen (2001), 15 persons with polio's late effects
worked out in a pool for 40 minutes twice a week for 5 months. At the end of the
study, participants reported an increased sense of well being, pain relief and
increased physical fitness. Additionally, at the end of the 5-month period, their
heart rates during exercise were down. The study's investigators recommend this
program of pool exercises in heated water.
In his 1998 book, Managing Post-Polio: A Guide to Living
Well with Post-Polio Syndrome, Halstead additionally provides general guidelines
for customized exercise based on his personal and clinical experience with the
effects of polio:
- ØIndividualized
and supervised program. Exercise programs should
be supervised initially by a physician or physical therapist experienced in
neuromuscular diseases, if not polio. Each program should be customized to
your personal needs and residual strengths. Given these constraints, research
studies have shown that some polio survivors (but not all) can improve muscle
strength (as a result of new muscle hypertrophy, or enlargement) and enhance
cardiovascular endurance with a closely monitored training program. In fact,
some studies have reported an increase in strength in muscles both with and
without new weakness.
- ØType
of exercise. There are numerous kinds of exercise.
Finding the one that is right for you and each of your limbs often takes trial
and error. Usually, it is a good idea to find two or more exercises that can
be varied, exercising different muscles on alternate days. For example, walking
or exercising the lower extremities one day and then performing an upper extremity
exercise the next. This kind of schedule provides a period of rest for each
muscle group and variation that keeps the overall exercise program challenging
and enjoyable. As a general rule, muscles that have a grade of 3 or less (using
the muscle examination scale: 0 = no contraction and 5 = normal strength)
should be protected and not exercised; grade 3+ muscles can be exercised with
caution; grade 4 and 4+ muscles can be exercised moderately; and grade 5 muscles
can be exercised vigorously.
Start Slowly; Make Adjustments; Keep
Going
It will be important to gradually begin your personalized
exercise routine - only do little bits at first. One approach might be to apply
the “20% Rule”. If you have chosen to do a conditioning program, Stanley
Yarnell, MD (1991), post-polio specialist, suggests a general conditioning exercise
program to restore stamina or endurance using this “20% Rule”. You establish
your maximum capacity (the point at which you begin to tire) for any one exercise.
Then you begin your program by working at 20% of that maximum exercise capacity.
Do
that 3-4 times per week for one month and then increase the rate (time) of exercise
by another 10%. Each new month, increase the time exercising by another 10% until
maximum capacity is reached. Yarnell clearly warns polio survivors to stop if
they become fatigued during their exercise program, or if they experience pain
or aches in their muscles. Most survivors, he says, “are able to continue
increasing their exercise program to nearly the maximum capacity”. Rests
are to be taken every few minutes. This 20% Rule can also be applied to home stretching
and flexibility programs too.
Halstead also lays out the following guidelines as you begin
your exercise program:
- ØExpect
improvement. Exercise should make you feel better
physically, and even, mentally. If the activity is not strenuous enough to
improve your strength, much less your cardiovascular system (eg, stretching
or yoga exercises), it still should give you a psychological lift just to
be doing a special activity for yourself on a regular basis.
- ØListen
to your body. Avoid pain, fatigue, and weakness.
These symptoms are signals that your muscles have overworked. A brief period
of fatigue and minor muscle pain for 15 minutes to 30 minutes after exercise
is usually normal. Symptoms that last longer than 30 minutes to 60 minutes
reflect muscle overwork and possible injury. If this occurs, the exercise
should be reduced or stopped. Any exercise that causes additional weakness
should be discontinued immediately.
- ØPacing.
Pacing (ie, not going too fast and methodically taking breaks) has been shown
to be safe and effective in increasing strength in some individuals. The intervals
of exercising can be as short as 2 minutes to 5 minutes alternating with equal
intervals of rest. The evidence also shows that secondary symptoms, such as
generalized fatigue, can be reduced as individuals become conditioned and
are able to perform more work with less expenditure of effort.
- ØUse
your best muscles. Polio is often a focal, asymmetric
disease with variable amounts of weakness in different limbs. Exercise the
limbs least affected or those completely unaffected by polio, while avoiding
the more affected extremities. For instance, if only the legs were affected,
then the arms can be used in a fairly strenuous program that includes swimming
or using an upper extremity arm bicycle; meanwhile, the legs will usually
get adequate exercise in the course of doing daily activities.
- ØWarm
up and cool down. As with other exercise programs,
a warm up (very light movements such as walking slowly, arm circles or leg
lifts that are done for about 5 minutes to get your muscles warm, and to get
the blood flowing through your body) followed by gentle stretching should
be done to improve flexibility and reduce the possibility of injury. After
exercising, a cool-down period (very light movements like the warm ups that
will slowly decrease heart rate and prevent any feeling of light-headedness
that can occur if exercise is stopped abruptly) should take place. Finally,
the type of activity should be one that the participant enjoys to minimize
the potential for dropping out because of lack of interest.
Having the tenacity to stick with the program and make the proper
adjustments is a real challenge, but polio survivors are good at setting goals
and achieving them. Across the country men and women who had polio are beginning
to apply these principles of exercise and are experiencing much success. The
real reason to get into motion is that exercising can make you feel better!
Joan Headley (personal communication, February 26, 2002), high profile polio
survivor with a mild disability attests to that in her personal account:
In 1994, seven years after I had switched jobs from
teaching school (and being on my feet most of the day) to working at the International
Polio Network where I consciously stayed off of my feet, several observations
caused me to rethink my approach to activity.
The pain in my 'good' leg was gone, but was replaced by a pain in the hip of
my 'polio' leg. Shopping trips and other family outings were cut short because
I did not have the stamina to be on my feet for more than a couple of hours.
Each year it became more difficult to climb the stairs to reach my symphony
seat because my legs were weak. Then one night, while walking up those stairs
and 'listening to my body', I also realized I was panting and 'out of shape'.
One day an elderly polio physician suggested that the
pain in my 'polio' leg was not from muscle weakness, but from connective tissue
tightness and perhaps I should 'stretch it'. It was at that point I decided
to make a change. I visited Bally's with my brother and sister-in-law and we
made the circuit trying each machine identifying my weakest muscles. So, I began
an 'exercise' program using Dr Stanley Yarnell's (St Mary's Hospital, San Francisco)
20% Rule. I did a select exercise to the greatest extent I could, and then cut
it back to 20% and slowly added repetitions and distance carefully observing
if there were any consequences.
Today, eight years later, I have eliminated the pain
in my leg by doing 30-35 repetitions at least five times a week, as well as
two exercises for my arms. I also walk one mile an average of four times a week
and do about an hour of stretching exercises once a month in the pool.
For a few years, I walked in the neighborhood park
and an added benefit was that I left all of my daily work problems there. I
now walk at the YMCA on an official track with no worry about bumps in sidewalks
or my safety when I walk in the evenings. I still leave my problems behind,
however - the happily embraced extra benefit of a good exercise program.
Selected References on Post-Polio Exercise
Agre, JC (1995). The Role of Exercise in the Patient
with Post-Polio Syndrome. Annals of the New York Academy of Sciences, 753,
321-339.
Birk, TJ (1997). Polio and Post-Polio Syndrome.
In JL Durstine (Ed), ACSM's Exercise Management for Persons with Chronic
Diseases and Disabilities (pp. 194-199). Champaign, IL: Human Kinetics,
Inc.
Halstead, LS (1998). New Health Problems in Persons
with Polio. In LS Halstead (Ed), Managing Post-Polio: A Guide to Living
Well with Post-Polio Syndrome (pp. 20-53). Washington DC: NRH Press.
Silver, JK (2001). Post-Polio Syndrome: A Guide for
Polio Survivors and Their Families. Yale University.
Exercise for Polio Survivors,
Gazette International Networking Institute, 2001.
Maynard, FM & Headley, J (Eds) (1999). Handbook on
the Late Effects of Poliomyelitis For Physicians and Survivors. Saint Louis,
MO: Gazette International Networking Institute.
References
Birk, TJ (1997). Polio and Post-Polio Syndrome.
In JL Durstine (Ed), ACSM's Exercise Management for Persons with Chronic
Diseases and Disabilities (pp. 194-199). Champaign, IL: Human Kinetics,
Inc.
Halstead, LS (1998). New Health Problems in Persons
with Polio. In LS Halstead (Ed), Managing Post-Polio: A Guide to Living
Well with Post-Polio Syndrome (pp. 20-53). Washington DC: NRH Press.
Maynard, FM & Headley, J (Eds) (1999). Handbook on the Late Effects of Poliomyelitis
For Physicians and Survivors. Saint Louis, MO: Gazette International Networking
Institute.
Hoffman, C & Maynard, FM (1992). A Program of Nutrition
Education and Exercise for Polio Survivors: A community-based model for secondary
disability prevention. Topics in Clinical Nutrition, 7(4), 69-80.
Tate, DG & Leonard, J (2001). [Wellness for Women With
Polio: A Holistic Program Model]. Unpublished raw data.
Willen, C & Sunnerhagen, KS (2001). Dynamic water exercise
in individuals with late poliomyelitis. Archives of Physical Medicine and
Rehabilitation, 82(1), 66-72.
Yarnell, SK (1991, Summer). Non-Fatiguing General Conditioning
Exercise Program (The 20% Rule). Polio Network News, 7(3).
The above monograph quotes extensively from Halstead and
Yarnell.
Copies of Dr Lauro Halstead's book Managing Post-Polio:
A Guide to Living Well with Post-Polio Syndrome are still available from
the Network for $27.50 (including postage and GST).
Members may remember that Dr Stanley Yarnell was a keynote
speaker at our 1996 International Conference Living with the Late Effects
of Polio. Dr Yarnell's paper The Late Effects of Polio, which was
presented at the Conference, describes the 20% Rule in some detail. Copies of
the 170-page Conference Proceedings containing all papers from the 3-day
Conference are still available from the Network for $29.00 (including postage).
Accompanying audio tapes are also available ($12 for a single tape, or $11 each
if two or more are purchased, plus postage).
To purchase any these valuable resources, just contact
to the Network.
A
Story About Three Young Men
Bryan Wishart
June 2002
Australian Foundation for Disabled - 50th
Anniversary
The Australian Foundation For Disabled (Afford) began
as The Poliomyelitis Society in 1952 offering care and support to polio survivors
and their families. Since its formation, the Society has undergone many
name changes and broadened its service delivery to assist other than polio survivors.
This year marks the 50th Anniversary of the organisation and a number of activities
will be held in celebration. In the last Network News it was reported
that a reunion would be held in May. We have since been advised that this did
not occur and that the reunion is now expected to be held in July. If you would
like further information or wish to express an interest in attending, please
ring Maureen Turner at Afford on (02) 4777 4250 or email her at polio@afford.com.au.
Polio Particles
Mary Westbrook
Polio Particles is compiled by Mary Westbrook
as items in the press or professional journals catch her eye. Included in this
series are brief reviews of books on polio or post-polio, updates on post-polio
research, information about immunisation and the status of global polio eradication,
and other items of interest. Mary's series is now being syndicated around the
world as other post-polio newsletter editors pick up on the interesting items
Mary includes.
Doctors not the only Australian opponents of Sister
Kenny
Sister Kenny's departure from Australia is usually attributed
solely to her conflict with doctors. However research by Phillipa Martyr, for
her PhD degree at the University of Western Australia, reveals that the role
of the Australasian Massage Association's (precursor of the Australian Physiotherapy
Association) antagonism against Kenny has been overlooked. Kenny threatened
therapists' livelihood, particularly the growth in the number and status of
their workforce provided by the polio epidemics. Martyr cites numerous examples
of how the Massage Association went out of its way to discredit Kenny and
to align themselves securely with the orthodox medical profession, keeping up
a steady pressure on their respective medical connections which contributed
to the eventual rejection of Kenny and her methods in Australia. In Queensland,
the Association attempted to prosecute Kenny because she practised what she
calls re-education … As re-education is an essential part of physiotherapy
and as Sister Kenny is untrained and unauthorised by the Board she should not
be allowed to either practice or teach. When therapists found that legally
nothing could be done, they commenced investigation of Kenny's nursing background
and a steady flow of communication with other branches warning them about
Kenny's activities. One letter lamented, It's hard indeed when our medical
men support such rubbish as the Kenny method. Worried at their inability
to compete with Kenny's public profile the Association appointed two officers
to publicise cases of recovery from polio after treatment by physiotherapists.
Kenny visited England in 1937 and on her return to Australia said that many
hospitals had offered her facilities. The Association had warned its British
counterpart of Kenny's lack of credentials and used this connection to expose
Kenny's claims of the British offers as false. Martyr argues that in its attack
on Kenny the Association gained state and public attention … and thanks
to its policy of association and alliance with the medical profession it had
gained the advantage. Martyr notes that ironically much of Kenny's method
was integrated into physiotherapy. Kenny herself had not been legitimised
but her methods of treatment had. Interestingly the website of the Kenny
Memorial fund (which in conjunction with the School of Nursing at the University
of Southern Queensland is hoping to raise $1.5 million to establish a Sister
Elizabeth Kenny Professorship in Rural and Remote Nursing) describes her method
as hydrotherapy in warm salt baths, extended manipulation of affected
arms and legs, together with daily massages … much like contemporary physiotherapy.
PPS ends Arthur Clarke's travels
Reuters (6/11/01) reported that Wheelchair-bound science
fiction writer Arthur C Clarke says he plans to spend the rest of his days in
his adopted home Sri Lanka because he no longer has the energy for overseas
travel. Clarke, 83, widely acclaimed as a prophet of the space age, said the
crippling post-polio syndrome has forced him to decline an invitation for a
gala dinner in his honour at the Playboy mansion in Los Angeles. “I can
no longer face overseas travel”, said Clarke in a videotaped message to
the gala … “I am completely wheelchaired owing to post-polio syndrome
and am very limited in time and energy”. The report described Clarke
as one of the most celebrated science fiction writers of all time. He has
seen many of his predictions come true, including a then-controversial 1945
theory of a world linked by geostationary satellites.
Iron lung baby discovers her past
A story in The West Australian (28/12/01) about 53 year
old Jan Findlay, Australia's first iron lung baby, reflects how attitudes
regarding the capabilities of parents with disabilities and the wisdom of doctors
have changed in the last half century. The story tells how Jan was reunited
with her birth father, Jack Clark, last Christmas. Jan's mother Betty Clark
contracted polio in 1948. She was briefly removed from her iron lung to give
birth to Jan. Betty returned home after four months and on doctors' advice put
Jan up for adoption. Jack said I didn't want a bar of it at the time
because I didn't want to lose my daughter. The doctors said Betty would never
be properly able to look after the baby so we didn't really have a choice
at the time. After the adoption Betty returned to hospital for a further
year of rehabilitation and Jack looked after their son. Jan, who learnt that
she was adopted 14 years ago, only recently managed to trace her father. Betty
died in 1985. Jan said she felt no resentment about being adopted …
“That was just the way they did it in those days”, she said.
The last iron lungs
On 17 February Associated Press USA ran a story, Woman
Spends 51 Years in Iron Lung. It tells of Diane Odell of Tennessee who contracted
bulbo-spinal polio aged 3 and still uses a 7-foot long, 750-pound iron lung.
Iron lungs were first used in 1928 but by the late 1950s were largely replaced
by positive-pressure airway ventilators. Production of iron lungs ceased in
the USA about a decade ago. The manager of a Pittsburgh company that manufactures
home ventilators is quoted as saying that only about 75 to 100 are still
in use today ... In some cases they are not used all the time. About 200 iron
lungs exist that can be recirculated among people who need them. Diane can
speak when breathing out. She uses 'sip and blow' switches that allow her to
operate a television. Using a voice-activated computer she wrote a children's
book, Less Light, which is the story of a tiny star named Blinky
who dreams of becoming a wishing star. Diane is currently writing her autobiography
because she wants to show children, especially those with physical disabilities,
that they should never give up. 'Its amazing what you can accomplish if you
see someone do the same thing' she said. Diane obtained her high school
diploma working from home and has an honorary college degree. Her parents and
married sisters care for her. Recently a fund-raising gala event attended by
1,100 people including Al Gore, the former Vice-President, raised $US110,000
to establish a foundation that will care for Diane when her parents are unable
to do so. She attended the event in her iron lung that was draped with an American
flag. She wore a sequined dress and tiara. Diane said she feels blessed with
good friends and a good family, and she is thankful. 'I've had a good life'.
A similar decline in the use of iron lungs in the UK is
described in The History of the British Iron Lung (www.geocities.com/ironlungmuseum/ironlung.htm).
In 1968 St Thomas' Hospital in London began selling off its iron lungs. The
Melbourne museum has an iron lung from the old Fairfield Infectious Diseases
Hospital. It is decorated in red and black as its former inhabitant was an Essendon
supporter and can be seen on the Web at www.museum.vic.gov.au/hottopics/article.asp?ID=324.
In Sydney, Network member Gabby Hannemann has been sleeping
in the same iron lung since 1967, when it came home with her from Prince Henry
Hospital. She was 10 years old at the time. Because of the
age of the lung, maintenance is becoming something of a problem. As far as Gabby
knows she is the only person in NSW still using an iron lung, and she feels
this probably adds to the maintenance problems as no-one is learning about them
now - the iron lung is considered obsolete. Gabby would be interested in hearing
from any other polio survivors still using an iron lung, particularly with a
view to sharing information on how they are coping with problems arising from
the age of their units.
Polio survivors used in overuse injury research for
military
An article on polio published in The Dallas
Morning News (12/1/02) wrote about the late effects of polio: Doctors
attribute the symptoms to overused muscles, a cruel twist of fate because survivors
were encouraged to work the muscles hard during rehabilitation. 'The medical
community pushed them a lot', said Dr Mary Ann Keenan, a polio specialist at
Philadelphia's Albert Einstein Medical Center. 'They had much weaker muscles
than we perceived. We also underestimated how hard the everyday activities of
life are, especially when they don't have that muscle strength.' Dr Keenan argues
that more research could not only pay off for polio survivors, but also have
long-term benefits in the study of neurological and rehabilitative disorders.
She recently received a $1 million grant from the Army to investigate overuse
injuries. Keenan uses post-polio patients in this research. Because they
are susceptible to an accelerated pattern of overuse symptoms the
post-polio population provides an excellent model for the study of overuse disorders
in the general population Keenan said in an article she and her colleagues
published in the Archives of Physical Medicine and Rehabilitation (volume
81, June 2000). She explains that overuse injuries occur directly when weakened
muscles must work harder to maintain a certain force or indirectly when alternate
muscles are recruited to compensate for weakness. Sometimes people are not
aware that they are overusing muscles to compensate for undetected subclinical
weakness. She has found that among polio survivors, those with leg weakness
are more prone to shoulder overuse injuries, as are younger and middle-aged
survivors probably because they lead more active lives than older retired survivors
do.
Left behind by the discovery of polio vaccine
Articles on the history of polio sometimes show photographs
of patients in polio wards celebrating the discovery of the Salk vaccine. Yet
the reality was that this discovery resulted in the termination of most research
into the treatment of polio and the loss of doctors' interest in polio patients.
As Wilfred Sheed, a British born American journalist who contracted polio aged
15, wrote in his autobiography: They never did learn very much about polio
except how to prevent it. Sheed confesses that he was surprised at the
force of my irritation the day I first read about Dr Jonas Salk and his famous
vaccine. I could have sworn I knew better than that by this time — knew
for instance, that I wasn't going to get my legs back now, whatever anyone discovered
the switchboard of my spine had been dismantled years ago — and knew from
observation that a lot of two-legged people are absolutely miserable …
Yet here I was flinging the overseas edition of Time magazine against the wall
of my Oxford sitting room so hard that the staples fell out. What had taken
the man so long? … I was back where I began, pounding the sky with my fists
and hoping for a cure. Well this really was the end, baby. There'd be no more
research now for sure, and no more gleams under the door, or hopes so small
and crazy that I hid them even from myself. It was a small loss and a huge one
at the same time, but I guess what gripped me most wasn't my own totally hypothetical
loss as the spectacle of all those people smiling and cheering as the last boat
pulled out … I guess the message for the poor wretches on the dock was
… they didn't even seem to be looking in our direction any more. We were
last year's cover story now.
I must admit to having a similar reaction at some
post-polio conferences that have had as their keynote address a talk on the
success of the polio eradication program. Of course I'm delighted that people,
particularly my children, will no longer be vulnerable to polio but such addresses,
which are invariably the best news delivered at the conference, have nothing
to offer polio survivors for whom such conferences are held.
(In Love with Daylight, Wilfred Sheed's autobiography,
was published by Akadine Press in 1999. Much of it concerns his later fight
with cancer.)
Polio facades
The effort polio survivors put into denying or minimising
their disabilities and the way PPS can demolish such facades is vividly described
in Sheed's biography. He writes, I had taken the art of concealment to such
dizzy heights that I was genuinely surprised now by offers of help: where had
I gone wrong this time? If I stumbled, I had learned to stare balefully at a
nonexistent pothole until the others could almost see it too, and if I outright
fell, I was up so fast it seemed like an optical illusion. Or so I hoped. The
truth is I was probably always a lot more handicapped than I let on, either
to myself or others. My knacks were all geared to the same end, a massive cover-up,
a downright Watergate of the nerves and muscles, in order to pass inspection.
As Bernard Shaw said of duchesses, if people treat you like one, you are one;
and I worked on my walking as assiduously as Eliza Doolittle worked on her talking:
not just to do it better, which is hard, but to fool people, which is surprisingly
easy. And I would receive my reward for all this spit and polish, when someone
I knew slightly would exclaim on, let's say, our third meeting, 'What's the
matter — did you hurt your leg?' It was like smuggling the Hope diamond
past smiling Customs officials. But I was like a regiment trained to parade
better than fight, and when the so-called post-polio syndrome hit me in my mid-fifties,
it weakened the whole physical apparatus just enough to call my bluff on all
fronts at once — and no one could have been more surprised than I to realize
quite how much I had been faking it all these years.
The History of Prince Henry Hospital on CD
The history of The Prince Henry Hospital has been recorded
on a set of CD-ROMs by the Little Bay Coast Centre for Seniors.
In 1999 the Centre accepted a Federation Grant to produce
CDs on the history of The Prince Henry Hospital, which was originally known as
The Coast Hospital. The Hospital celebrated its 120th anniversary in September
2001.
A three-CD set is now available which features a tour of
the hospital led by Dr Ralph Hockin, its longest-serving medical superintendent.
You can contact the Centre on (02) 9382 5371 to purchase a set of the CDs for
$15 plus postage.
The three CDs are the first of several covering the history
of The Prince Henry Hospital. The Centre, which now has a well-equipped multimedia
centre, will continue to record changes being made to the Little Bay site as it
moves into a new era.
Raffle Winners
The Raffle to help fund Conferences and Seminars to bring
up-to-date post-polio information to members was drawn at the Mini-Conference
on 18 May. The following members and friends were the lucky winners:
Myer Gift Vouchers ($1,750) were won by H Drady (Lyndhurst)
A financial plan / needs analysis ($1,440) was won by Sister
McFadden (Kensington)
Family variety hamper ($500) was won by C & B Maurice (Bateau
Bay)
Oil / electric heater ($200) was won by Lynette Bray (Lapstone)
Leoma Collection quilted decorator
bedspread ($180) was won by Doug Sutherland (Burwood)
Hand-made, home-spun wool knitted blanket ($150) was won
by John Cerniauskas (Wollongong)
Hand-stitched cross-stitch wall hanging ($100) was won by
Ralph Buck (Seven Hills)
The Management Committee expresses its deep gratitude to
all members and their families and friends who bought and sold tickets in support
of the Raffle.
Support Group News
Neil von Schill Phone:
(02) 6025 6169
Support Group Co-ordinator Email:
neilvon@optusnet.com.au
In mid February I journeyed north from Albury to try to
catch up with old friends and colleagues as well as visit some convenors. My first
stop was in Griffith where I met and was made welcome by Dawn Beaumont-Stevens.
Dawn is our only voice in the Riverina and we are extremely grateful to Dawn for
conducting a telephone support service in this vast area of the state.
Following a stopover at my hometown of Dubbo I continued
north but was held up by a mechanical breakdown at Quirindi and was late into
Kootingal where one of our Northern Inland members, Laurie Seymour,
and his wife, Beryl, live. I was very relieved to finally reach them
and joined them for tea which was most welcome and very much appreciated. Laurie
edits a newsletter The Link which he distributes to many members in the
north and other parts of the state. I know that he would love to receive contributions
from members who receive it.
At Ballina I was pleased to catch up with Northern
Rivers convenor, Rosalie Kennedy, and her assistant, Fae Mortimer.
We enjoyed a very tasty morning tea which Fae obtained on the way home from
a late night outing. Rosalie and Fae conduct an active support group which meets
every two months at a number of venues.
Whilst in this part of the state I was disappointed not
to catch up with convenors Susan Stewart from Grafton and Ken
Dodd of Coffs Harbour who both had commitments in Sydney at the time
of my visit, but there will always be a next time.
I then proceeded south to Muswellbrook where I met
Bruce Buls who is convenor of the Upper Hunter Support Group. Bruce
would very much like to hear from any members who live in the vicinity of Muswellbrook,
Scone, Denman and Murrurundi. You can contact him on (02) 6545 1993.
On my return through Dubbo I caught up again with
convenor Gregg Kirkwood who has received enquires from a number of polio
survivors. As I completed the last leg of my trip I called in on my old friend
Jean Robinson who was our convenor in Young. Unfortunately Jean
passed away a few weeks later and we extend our condolences to her family. Jean
had a wonderful spark and spirit and should be an example to all of us.
May I express my sincere thanks to all convenors who made
themselves available to see me during my tour and for extending their very welcome
hospitality.
The Eastern Suburbs Support Group under the guidance
of Eric Sobel has attracted several new members. The meeting held on 15
June at the Labor Club in Randwick saw eight enthusiastic members in attendance.
The group is now getting together on the third Saturday of every second month
and for the next meeting on 17 August have decided to change the format to include
lunching together prior to the normal information exchange. Any member living
in the Eastern Suburbs is welcome to join the Group - ring Eric on (02) 9389 7967
for more details.
In an endeavour to broaden the base of our support network,
at the last Management Committee meeting it was agreed that we should create another
classification – that of Support Network Contact Person. This person
would not have the responsibility of convening a Support Group in a particular
area but would simply be a contact person for the Network in their local community,
whether it be country or city. Further details will be provided in the next Newsletter,
however, if you are interested in obtaining more information please ring or email
me.
Post-Polio Post .
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+ .
+ .
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I was delighted to receive this letter from Judith Plummer,
daughter of member Marjorie Corby, Taree. On checking dates of birth in the membership
files, I found that our records show Marjorie is our oldest member, having been
born in 1910. It is great to hear that she is still going strong and with such
wonderful family support. I will look forward to hearing from Judith again.
Sitting down to fill out a cheque for subscription renewal,
I wondered if you would like to know about my mum – a PPS survivor.
Mum contracted polio in 1921 when it was known as Infantile
Paralysis and affected the right side of her body. She grew up, married and had
five children. When war was declared, my father joined the army and was posted
overseas in April 1940 and did not return, leaving mum to raise us on her own
on a “deserted wife” pension.
Mum strived to keep us all together and we never realised
how hard her life must have been, looking after five children. I remember washing
day each week, she would fill the copper and light it at 7 am in the morning and
still be washing when I came home from school at 3:30 in the afternoon. Her greatest
delight was when my oldest brother bought her a second-hand Hoover washing machine
with a hand wringer when he became an apprentice butcher. The muscle weakness
became more obvious as mum used to trip very easily and became tired and fell
asleep over the ironing board – increasing to where she is in 2002.
Mum is now 91 years old and 95% wheelchair dependent because
of PPS. From her five children, she has eighteen grandchildren and to date, thirty-seven
great grandchildren. I am the youngest, a daughter, and I live with mum in her
retirement villa as her carer.
All of us love her dearly, her tireless devotion to our
earlier years more than likely resulted in her symptoms today and now it's our
pleasure to look after her.
Coming Events – Dates To Remember
| Friday 25 October |
Regency Function Centre Burwood RSL |
Social Event - Reunion Luncheon of Polio Survivors and Hospital
Nurses Everyone is welcome |
| Saturday 30 November AGM and Seminar |
Independent Living Centre Victoria Road Ryde |
Falls, fear of falling and activity in older people with polio: what
can be done to help? presented by Dr Keith Hill Senior Research Fellow,
National Ageing Research Institute (NARI), and Co-Director, Falls and Balance
Clinic, Melbourne Extended Care and Rehabilitation Service |
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