A particular concern that became apparent from this research,
both from the comments and the data, was that our members are very reliant
and even totally dependent on their family, especially spouses, in coping
with their lives. This puts physical and emotional stress on family relationships,
and there must be an underlying fear for many people of how they would cope
if they were left alone, or if the carer is no longer able to provide the
necessary assistance.
Members are encouraged to select ideas from the above and send
your own letter to your local MP and enlist his or her support for the motion.
Whenever you approach your local member, please let us know to whom you wrote
or spoke, and what reaction you received. The Management Committee would like
to know who to follow up, and what issues might need to be addressed.
Assuming our combined efforts are successful in having the motion
re-listed for debate early next year, the Management Committee is considering
hiring a wheelchair-accessible bus to take interested members to Canberra.
We will not only hear the debate first-hand, but our presence will help to
raise the awareness of politicians to the on-going effects of polio on people's
lives. We may have little warning of when the motion will be debated, so if
you would like to participate in supporting the Network in person, please
register your interest NOW by phoning Gillian on (02) 9663 2402 or Alice on
(02) 9747 4694.
What has the Management Committee Done So Far?
Since the last Newsletter, we have written to the four members who spoke
to the motion: Dick Adams, Barry Wakelin, Michelle O'Byrne and Tony Lawler.
To Mr Adams we wrote in part, Our members are extremely grateful to you
for bringing to parliamentarians an awareness of the difficulties that those
who have had Poliomyelitis encounter both in their daily lives and in obtaining
understanding and appropriate medical treatment. It was particularly gratifying
that your speech showed that you had researched the topic and could speak
with both understanding and caring about the impacts of the late effects of
polio on polio survivors. … The members of the Network encourage you to strive
for your motion to be again listed for debate. We wrote to the other members
that It was also gratifying to see that there was bipartisan support for
the motion. … we thank you for your support and look forward to a positive
outcome.
We have also written to the Minister for Health, Michael Wooldridge;
the Shadow Minister, Jenny Macklin; the Leader of the Opposition, Kim Beasley
(himself a polio survivor); the NSW Minister for Health, Craig Knowles; and
the NSW Shadow Minister, Jillian Skinner, seeking in part to have the health
needs of polio survivors included on the agenda of the next meeting of Health
Ministers.
The Paralympics … or How I Cheered Myself Hoarse
Anne Buchanan
It was suggested that I write down my experience at the Paralympics to share
with those who couldn't, or didn't, attend. “No worries” was my confident
(and as I see it now, naive) reply. I have since realised that the big problem
is … how do you explain “atmosphere” to someone who wasn't present. I then
figured out that when all else fails, the best thing to do it start at the
beginning, so …
I attended the Opening Ceremony with some friends, and it was nothing short
of spectacular. Most of you probably saw it on TV, so I won't go on about
it here, but will try to tell you about some things you didn't see on television.
I went to the Paralympic Games on Sunday 22nd October, and all
went well. A fast, efficient transport system got me there easily. I was happy
with that, and felt great on arrival.
I wandered around for a while just soaking up the sights and
sounds. People from all over the world could be heard talking in many languages,
but naturally, the main language I heard was the cheerful Aussie. Many of
the people attending the games were dressed for the occasion, with clothes,
hats and face paint ranging from quite trendy to over-the-top outrageous,
but all supporting the wearer's chosen team. I felt even happier now - I was
in amongst the fun.
The first event I went to was men's wheelchair basketball - Mexico
vs South Africa. While this was not one of the main matches of the games,
it was still great to see. I know we can all watch these things on TV at home,
but truly it is just not the same. They move fast on TV; they move even faster
in reality. They appear to turn on a spot on the court on TV; they appear
to turn on an even smaller spot on the court when you are there to watch.
And of course there were the spectators. Most cheered wildly when either team
scored a goal and signed loudly when any penalty was awarded. No-one seemed
to care much who won. We were all just there to have a good time, and we certainly
did that. When I left the basketball, the only thing spoiling my day so far
was the fact that the game had ended.
Next stop was that athletics stadium. Here I watched wheelchair races,
visually impaired runners, shot put, discus, javelin, and part of the men's
pentathlon. This venue proved a little disappointing in just one way - so
much to see and only one pair of eyes to see it with! Even though it can be
hard work enjoying yourself, I soldiered bravely on and cheered loudly with
the rest of crowd - and there were thousands of them. I must say it was a
fantastic experience. The day seemed to be getting just better and better,
but none of this prepared me for the next event – archery.
I particularly wanted to see the individual and team events in
the archery as Tony Marturano was competing in these events. I knew nothing
about archery then, and not much more now, but thought it would be good to
see someone you know competing. Ruth Wyatt and I went together to cheer Tony
on. It seemed no big deal at that point in time. We got there early so had
good seats near the firing line. By the time the competition started, all
the stands were almost full, and still more spectators were arriving. As each
group of competitors entered the arena they were cheered, and then it happened.
The crowd went wild. The Australian had entered the arena. The expected cheers
of Aussie, Aussie, Aussie could not be heard though, only Tony, Tony, Tony.
There was chanting, there was foot stamping, there was screaming, as well
as the usual signs (GO TONY of course), streamers, and goodness knows what
else. Every shot was accompanied by another wave of noise.
When Tony finished competing there was even more acclaim. Tony
was not the last competitor for the afternoon, but very soon after he left
the arena, the stands were half empty again and others were leaving, almost
as if the competition had finished, and I guess for Tony's fans it had.
I hope Tony enjoyed himself on that Sunday afternoon as much
as his fans did. For me it was an experience I shall never forget. I arrived
at Olympic Park happy because I had had good transport to get there. I left
Archery Park after a mind-blowing experience that I could not even have imagined.
I returned to Archery Park the following week to see the teams
event. There were three men in each team and while there is no doubt the Australian
team was cheered on as a team, again the name most heard was Tony. The crowd
was a little more sedate in their antics at this event, but nonetheless the
spectators and atmosphere again provided as unique and overwhelming experience
as did the athletes.
The Paralympics provided the experience of a lifetime and I for
one am just so glad I did not miss it.
Ed: The Network was very well represented at the archery events, and
Tony has asked me to pass on his thanks to everyone who encouraged and supported
him over the last few years and to those who were able to go to the Paralympics
and cheer him on. He says it was a real buzz to shoot in front of so many
avid supporters. Next stop, Athens?

Tony “Robin Hood” Marturano zeros in on the bullseye at the Paralympics
Polio Particles
Mary Westbrook
Polio Particles is compiled by Mary Westbrook as items on polio or post-polio
in the press or professional journals catch her eye. Included in this series
are brief reviews of books on polio or post-polio, updates on post-polio research,
and other items of interest.
Polio survivor steals the show at Paralympic ceremonies
Atajan Begniyazov became the star of the athletes' parade at
the opening of the Paralympic games when he threw away his crutches and walked
on his hands with his feet pointing at the sky. As a result the organisers
included him as a last minute addition to the closing ceremony. He walked
on his hands to an armchair on centre-stage, the best seat in the house. The
Sydney Morning Herald reported that Atajan does this to entertain family
and friends back home in Turkmenistan, formerly part of the Soviet Union.
He had not planned to do so at the Games opening until he became so excited
by the enthusiastic crowd of nearly 100,000 at the Olympic stadium. Atajan,
a 20-year-old medical student, contracted polio when he was one year old.
His leg muscles are atrophied and one leg is shorter than the other. He is
a weight lifter whose qualifying lift for the Games was 132.5 kg, nearly
three times his own weight. He finished third in the last world championships
for disabled lifters. Asked if he would win a medal in Sydney he replied that
it depended on God's will. The Herald reporter questioned whether his
legs were God's will? Atajan simply smiled.
Mia Farrow helps in polio eradication program
Mia Farrow contracted polio when she was nine years old. She
spent three days in an iron lung. She was the only one of the seven children
in her family to contract polio. While she was in hospital her parents drained
their swimming pool, replanted the lawn, repainted the house throughout, reupholstered
the furniture, had the carpets cleaned and got rid of the dog. Such was the
fear of polio. Mia had a complete recovery from polio and in a recent interview
in USA Today (10 June 2000) acknowledges that she may develop post-polio
syndrome but as yet has experienced no symptoms. She describes contracting
polio as, a lastingly traumatic episode. But it was the beginning of my
awareness of other people, that there were people suffering. Her 13 children
include Thaddeus, whom she adopted from India. He is a paraplegic as a result
of polio. In June Mia, who is an UNICEF special representative, and Thaddeus
took part in a United Nations conference on polio eradication and she hopes
to visit Africa to publicise the program.
Polio is down but is it out?
The World Health Organisation (WHO) would like to stop universal
polio vaccination once it has declared polio eradicated, hopefully by 2005.
New Scientist's editorial (5 May 2000) talks of the possible
dangers of stopping. The fact that polio is nearly extinct, it says, is
a fine example of vaccines at work. But we now face a tricky endgame. Ironically
the very weapon that defeated polio has a sting in its tail. The main vaccine
(Sabin) is made of live virus that's been weakened. Unfortunately this
virus spreads in unvaccinated populations and can revert to its original nasty
form. So, in a world free from polio and polio vaccination, the weakened virus
could come back to haunt us. There are vaccines made from killed virus
(Salk) that don't revert but they don't work as well as live vaccines.
So we need a new vaccine but the drug companies are not going to develop a
vaccine that would soon be redundant. Debora MacKenzie in an article in the
same issue of New Scientist gives more details. In theory polio eradication
should be possible as only humans carry the virus, so if enough people
are immunised, the virus will no longer be able to find new victims and will
die out as smallpox did. Then we can stop immunising. However the weak
form of virus in the Sabin vaccine can cause polio (in about one in a million
vaccinations) and occasionally infects unimmunised people. Expert, Paul Fine,
says that we don't know how long the viruses from vaccination will survive.
They do not seem to survive long in the environment or in most people. But
the longer the viruses persist and, and the more people they infect,
the more chance they have to change (to a deadly form). It is known that
the Sabin virus can persist for years in people with impaired immune systems
eg people with HIV, and here they mutate, or change, faster than normal. Fine
estimates that the Sabin virus might have to survive only for three to
ten years before a large enough population of non-immunised people accumulated
to start spreading the virus. Reverting to the Salk vaccine
worldwide for the last few years of the eradication program would give the
Sabin virus more time to die out but the cost would be prohibitive. Already
some developing countries are objecting to paying for the eradication program.
Another nagging concern is emerging that could make some afraid to stop
vaccinating: bioterrorism. Laboratories all round the world have samples of
polio virus. They are supposed to destroy them one year after the disease
is eradicated. But prospective terrorists need only hide some now and wait
for a generation of unvaccinated children to emerge before they strike. 'The
horror of polio would make it a good weapon' says Roy Widdus of WHO. 'I would
not want to be the one to stop vaccination, given that risk'. WHO is being
criticised for an extraordinary act of ignorance, scrapping promising
developments for an improved polio vaccine in the 60s. This might have eliminated
the present concerns.
How did wild polio virus get into French sewers?
In May this year an outbreak of 60 cases of gastroenteritis led
officials in the French city of Strasbourg to investigate water pipes which
they found to be contaminated by sewage. The officials were surprised to also
find polio virus there. Initially they thought it was the weak strain produced
by Sabin vaccine, which is not infrequently found in sewage. However analysis
at the World Health Organisation's enterovirus laboratory showed that it was
a Mahoney-type strain of polio virus. This strain of wild polio virus, which
once killed thousands of people every year before vaccination began in the
50s, had been thought to be extinct in France though it is used in some research
laboratories. The journal, New Scientist (18 November 2000), reports
that laboratories in the area are being investigated to see if they have used
the strain in the last 10 years. New Scientist says that, Some of
Strasbourg's citizens must have swallowed the virus. The four-month incubation
period for poliomyelitis has now elapsed, and no cases of paralysis have been
reported since the incident. But the incident happened during an outbreak
of viral meningitis. No samples were analysed from these cases so some
may have been nonparalytic polio. It is estimated that 5% of a population
would need to be infected before the virus would be found in sewage. Such
a large number of carriers of a lethal polio virus in Strasbourg would be
unlikely without cases of paralysis. So it seems more likely that a concentrated
dose escaped from a laboratory. However the head of the enterovirus laboratory
is quoted as saying that, the Strasbourg incident highlights the continuing
risks posed by the virus, whether or not it was an escapee (from a laboratory).
… it would be stupid to stop polio vaccination any time soon.
Ed: The above two items highlight the importance of Australia's Polio
Containment Project recently announced by the Commonwealth Department
of Health and Aged Care – see the full story on page 14.
Itzhak Perlman on access at the Sydney Opera House
World famous violinist and polio survivor, Itzhak Perlman, gave
a talk titled To Help the Handicapped, Talk to Them which was reported
in Polio Deja View, the newsletter of the Central Virginia Post-Polio
Support Group (June 2000). In it he says, I've been in public buildings
throughout the world and it's clear that people who design them have no idea
what it feels like to use crutches or use a wheel chair. One of the great
architectural catastrophes of all time, from the point of view of any concertgoer,
much less one who is disabled, is the Sydney Opera House. A design contest
was held and the winner was an architect who had conceived a truly fantastic-looking
place with about a hundred steps leading to the entrance. There is no elevator
- not for the general public, not for the poor musicians who have to lug instruments
up all those stairs, and certainly not for the disabled. Why couldn't the
prize have been given to the best design that was also barrier free? Why,
when it's possible to make EVERYONE comfortable, is so little attention paid
to accessibility? It's mind-boggling.
Late effects of other disabilities
An article, Post-Everything Syndrome, appeared in the
American magazine, New Mobility (September 2000). Author, Bonnie Moulton,
discusses how polio survivors have raised medical and community consciousness
about the late effects of all disabilities. She writes, We should give
credit where credit is due. Polio survivors - inarguably the largest, most
vocal and most politically active disability group in history - have fought
to get health care providers, insurance companies and policy makers to recognise
that for millions, the experience of polio didn't end with recovery from the
initial illness. The model of self advocacy they created has extended far
beyond any single disability. She goes on to describe how survivors of
spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome,
long term amputation and other physical disabilities considered to be static
are experiencing late effects that seem like early ageing. As you will recall
from the Network's booklet Helping polio Survivors Live Successfully
with the Late Effects of Polio, some polios develop post-polio syndrome
which would seem to be unique to polio survivors. Most polios develop late
effects due to the wear and tear of living with a compromised body. It is
this that causes problems for people with other physical disabilities. Whatever
the causes of their symptoms the different groups' experiences are often
remarkably similar. Pain tops the list, followed by increased fatigue, decreased
endurance, increased spasticity and new muscle weakness … protocols that have
helped polio survivors, including a transition to a 'conserve to preserve'
lifestyle may be equally valuable to someone with spinal cord injury or spina
bifida. It means that people with Guillain-Barre syndrome have every reason
to print out an article from a post-polio Web site and tell their family care
physician, 'This sounds like me! Let's try some of these things'. The
stories in the article will sound familiar to polio survivors. Ken, aged 51,
with cerebral palsy, says, You slowly, or sometimes quite suddenly,
realize that you can't do things you used to do easily. Then you realize that
you're not really THAT old. That's the frightening part. Steve, aged 59,
who has spinal injury was told by his physiotherapist 'You have two speeds
now, slow and stop' … I can't do six things in one day anymore … As I've grown
older I've learnt to make sure that I don't make too many demands on myself.
As I get better at doing that, I've begun to be at peace. The author argues
that people with long-term disabilities are more alike than different so they
should be a community rather than a collection of enclaves. To have access
to services and supports we'll need as we age, we need to build coalitions.
Moulton has much to say about the failure of medicine in handling chronic
conditions. She quotes one doctor who recommends that people with late effects
of disability consult a specialist in rehabilitation medicine or in sports
medicine, Why sports medicine? Once you've had a disability for 30 or 40
years, the analogy that you're doing a marathon (every day!) doesn't seem
that far off. For this we pay a price. 'There is no doubt that the presence
of a disability causes a person to expend more physical, emotional and mental
energy every day than a person who does not have a disability', confirms Renee
Kirkby, an amputee for 30 years.
Polio in novels
Lately I have been tracking down novels in which polio plays a significant
role. Many such as Lightning in July by Ann McLaughlin are out of print.
I bought a second-hand copy. The book, published in 1989, tells of Holly,
a gifted flautist, and Dan, a history scholar at Harvard, who, to quote the
cover of the book, fall in love in a hospital, having both been struck
by polio on the same night…Their story explores unsentimentally the issues
of disability, love and courage. The author and her husband, Charles,
both contracted severe polio in 1955 from their baby son. The novel is based
on the diary Ann kept while in hospital. The novel ends as the lovers are
about to leave hospital. Ann has written her own story, One Couple's Journey
from Paralysis to Post-Polio in the book Polio (Edited by TM Daniel
and FC Robbins, 1997). After polio they went on to have successful careers
and a second child. Now as a result of PPS Charles can no longer walk and
Ann has a leg brace once more and swallowing problems. She says, We sometimes
speculate about how much easier it would have been if only one of us had developed
polio, for there have been times when our combined disabilities have limited
us severely. But they have bound us together as well and increased our understanding
for each other.
Crossing to Safety by Wallace Stegner,
a winner of many American literary awards, was published in 1987 and is available
locally (Try your library. Dymocks list it for $18.61 but all stores do not
stock it). It tells of the lifelong friendship of two couples who meet in
the 1930s. Shortly after their meeting Sally contracts polio and as a result
needs to use calipers and crutches. Years later her health declines further.
In the novel Sally's husband, Larry, says: One of the peculiarities of
polio is that its victims, once they have recovered from the virus and settled
down to whatever muscular control is left to them, live a sort of charmed
life. Crippled as they are, they are rarely ill, they are surprisingly tough
and durable, they astonish their sound companions with their capacity to endure.
But that is not forever. There comes a time in the life of every such patient
when the whole system—muscles, organs, bones, joints---begins to fall apart
all at once, like the wonderful one hoss shay. That sounds like a description
of PPS! Larry goes on to say, Every polio patient is warned to expect that
time, every polio family lives with the foretold doom waiting for it at some
unknown time in the future. One learns to live with it by turning away from
it, by not looking. And yet on occasion one is aware of an intense, furtive
watchfulness, and the victim, the doomed one, must surely have just as often
the vulnerable sense of being watched. There may be some truth in this
today when we wonder how much PPS will ultimately affect us but it was not
the case when we contracted polio. Then neither medical textbooks nor doctors
thought there were late effects. I do not know what Stegner's connection with
polio was but he knows it well. In one scene Sally's voice is described as
wearier than I had ever heard it. Even in her worst spells
she doesn't sound like this, and she takes care that there are very few
bad spells, and that when she has them they do not show. Larry
vividly describes the impact of polio on their lives. You can plan all
you want to. You can lie in your bed and fill whole notebooks with schemes
and intentions. But within a single afternoon, within hours or minutes, everything
you plan and everything you have fought to make yourself can be undone as
a slug is undone when salt is poured on him. As he reflects on Sally's
dependence on him he observes that contrary to what other people think, my
chains are not chains ... over the years Sally's crippling has been a rueful
blessing. It has made her more than she was; it has let her give me more than
she ever would have been able to give me healthy: it has taught me at least
the alphabet of gratitude. The book's title comes from the words of poet
Robert Frost: I could give all to Time except—except/ What I myself have
held. But why declare/ The things forbidden that while the Customs slept/
I have crossed to Safety with? For I am There/ And what I would not part with
I have kept.
Sister Kenny Television Show Seeks Interviewees
My name is Clare Bonham. I'm a television producer working on
a film about Sister Elizabeth Kenny. While she is little remembered these
days Sister Kenny was held in high esteem in the early part of last Century
thanks to her remarkable work with polio sufferers. I am planning a one-hour
documentary about the life of this fascinating woman. It's clear that she
was larger than life in many ways. She was over six feet tall and very imposing.
She stood her ground too and fought for what she passionately believed to
be right. As a result, tens of thousands of children around the world received
a more humane and possibly more effective treatment for the debilitating effects
of polio.
Kenny was a champion of what we now call a holistic approach
to treating illness. She included radical ideas into her treatment, and though
she was not a formally trained doctor her work was intuitively ahead of its
time. She used concrete visualisation techniques and firmly believed in mind
over matter. Kenny too is credited by some people with creating, or at least
legitimising, what has become the highly respectable field of Physiotherapy.
On the other side however, the Kenny method has been called humane,
though ineffective, by some people. She is remembered by some as being difficult,
demanding and a monumental self-promoter. There's no doubt there are two sides
to the woman that came from a struggling country town in outback Queensland
and rose to considerable international fame. I'd like to hear all sides of
the story – positive or negative.
My film will attempt to create an intimate portrait of this remarkable
woman by interviewing people who knew her and remember their encounters with
her. I would like to talk to people that were colleagues, nurses, children,
or just friends of Sister Kenny. If you or anyone you know remembers an encounter
with her and you would be happy to talk to me about it, you can contact me
via email at clarebonham@hotmail.com, or by mail at 342 Belmont Street,
Alexandria, NSW 2015.
I will be travelling around Australia and to the United States
next year to film this documentary and would love to hear from anyone with
a story to tell as soon as possible.
Polio Containment Project
As many of you will be aware, the Network is one of 23 signatories
to the Australian Childhood Immunisation Charter and actively promotes immunisation.
Edition 8, November 2000, of the Charter Members' Newsletter has just received
and includes an update on polio eradication. The item is reprinted here with
permission.
In September 1988 the thirty-ninth session of the World Health
Organisation's (WHO) Regional Committee for the Western Pacific adopted a
resolution calling for the eradication of polio in the Region by the year
2000.
On 29 October 2000 the WHO Regional Certification Commission
on Poliomyelitis Eradication announced that the poliomyelitis eradication
efforts in the Western Pacific Region, including Australia, had stopped the
circulation of the indigenous wild poliovirus. As a result, the Region was
certified as polio-free.
The Region is now focusing its efforts towards the goal of global
eradication. As part of this effort the Commonwealth Department of Health
and Aged Care is taking a lead role by implementing a laboratory containment
campaign that aims to identify and develop an inventory of all wild poliovirus
stock and potentially infectious materials that is stored in Australian laboratories.
The Victorian Infectious Diseases Reference Laboratory (VIDRL)
was contracted to coordinate the laboratory containment of wild poliovirus
in Australia. The project is funded by the Department and monitored by the
National Advisory Committee on Poliovirus Containment.
The national laboratory survey targets all Australian diagnostic, biological,
environmental reference, research, teaching, manufacturing and regulatory
laboratories.
To assist VIDRL with the survey, the Department set up the Polio
Containment Infoline, which was operational from 21 August until 22 September
2000.
The task of the Infoline was to contact over 1000 laboratories
Australia-wide to ascertain whether they held stocks of wild poliovirus.
Once identified, these laboratories were asked to destroy unwanted materials
appropriately. They were also asked to complete a Laboratory Screening Survey
Form providing details of any remaining materials.
This information will assist with the development of a national
inventory of poliovirus infectious or potentially infectious materials.
Polio May Be Gone, But We Aren't!
As a footnote to this item, there is a growing feeling amongst
polio survivors that the enormous effort WHO has put into the polio problem
cannot be allowed to wind down – we all know that eradicating polio, laudable
though the achievement is, does not address the on-going issues faced by polio
survivors throughout the world. Somehow, the world-wide community of polio
survivors has to alert not only our own individual governments, but WHO as
well, to our ongoing needs, and lobbying about this must start in earnest.
John Foyster from South Australia (polio 1956) recently drew our attention
to a website devoted to “big” fundraising (foundations etc) for polio eradication
(www.poliofreeworld.org). They invite comments to a forum. John made
the following contribution and hopes others will also write.
All old “polios” - I am one - support the effort to eliminate
new cases of polio. But the effects of having had polio will last for, probably,
over fifty years after the last new case. The language of “eradication” implies
that “polio” will no longer exist as a problem after there are no new cases.
But there will be continued and mounting economic costs for so long as polio
survivors are alive. It is time to start thinking more seriously about practical
ways of minimising those long-term economic costs by relatively lost-cost
support of young polio survivors.
In Post-Polio Syndrome, Manual Muscle Testing Problems
Arise From Judgement and Biology
Eddie Bollenbach
Eddie Bollenbach is a polio survivor and teaches microbiology,
biology, and chemistry at Northwestern Connecticut Community-Technical College.
He is a long time and valued contributor to several post-polio mailing lists
on the Internet, and is especially noted for his knowledge and skill at communicating
the current scientific understanding of the biology and biochemistry of viruses
and other scientific topics relating to polio and post-polio conditions.
This is a Lincolnshire Post-Polio Library Publication,
18 March 2000. The Lincolnshire website is an excellent source of information
for polio survivors around the world. The core of this site is a library of
well over eighty full text articles on Post-Polio conditions, many from peer
reviewed medical journals. The library is catalogued to assist reading order
and new articles are added typically every few weeks. A categorised directory
of polio resources is also provided with every entry having a description.
Polio news items from around the world are regularly included in the NewsBites
section and all the bi-monthly LincPIN newsletters are available online. Members
with internet access are encouraged to visit the library at <www.zynet.co.uk/ott/polio/lincolnshire/>.
When acute polio struck it was essential to measure the extent
of paralysis quickly. One of the techniques used was manual muscle testing.
There isn't too much to it really. The physician holds a hand against a patient's
limb and coaches the patient to push as hard as possible. Depending on the
judgement of the tester the patient's muscle strength is graded from 1, (Trace
Strength), to 5, (Normal Strength). This assessment was very valuable because
it provided a clinician with enough resolution in measurement to quickly evaluate
the extent of neuromuscular paralysis from acute polio in one session.
From the standpoint of muscle biology these tests made sense
too. During acute polio, motor nerves, and all their branches to muscle fibers,
die. The muscle fibers are then unable to receive motor stimuli from the brain
and spinal cord to induce voluntary movement. A manual muscle test would quickly
show that many or all muscle fibers were orphaned and had no ability to do
work. Appropriate therapy could then be initiated.
The biology of Post-Polio Syndrome (PPS) is distinct from that
of acute polio. In PPS end fibers of motor nerves begin to lose function.
This is a slow process which involves fatigue more often than muscle incompetence.
Let me explain. If a normal person is standing it is possible that 30% of
the muscle fibers in his leg are contracted to maintain his upright position
and posture. When those 30% get tired they automatically rest (switch off)
-- isn't the human body an ingenious creation? -- and another different 30%
of fibers contract to allow the first group to recoup. This can go on for
hours. Someone with PPS may have only 40% of his original muscle fibers. When
he or she stands they have only 10% in reserve, so in a short while there
are no substitutes to take the load off. The result is fatigue of contracting
muscles.
In the case described above what would show on manual muscle
testing? On contraction against a clinician's hand, strength may show normal
(5). But this is instant strength, which is what manual muscle testing measures.
Many people with PPS are not down in the (1) trace range, especially if they
recovered well from their acute polio. They are in the 5,4,3, and 2 ranges.
Dr Sharrad in 1953 [1] found that in order to identify any weakness,
by this kind of testing, more than half the anterior horn cells had to have
been destroyed during the original polio infection. Other clinicians have
also demonstrated the problems with manual muscle testing in grading PPS involvement.
[2,3]
The biology of PPS explains the problem. What we should be looking
for is fatigue in previously involved muscles, or less frequently in uninvolved
muscles. Manual muscle testing just doesn't do that. The PPS health professional
should be clear about what is being measured by manual muscle testing. It
may be, for many, that what is being measured is the original weakness and
not the new loss.
References