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PPS Forum at the
Clarion Hotel, Crawley
June
9th 2007
This was one of those
talks I was really looking forward to, and I
wasn’t disappointed.
The talk had been
arranged by Carol Neale from Polio central
office and Alex Curtis a senior
physiotherapist from the Lane Fox
Unit at St. Thomas’s hospital came to give a
talk on the late effects of polio, better
known as post polio syndrome or PPS, and
although not 100% understood she explained
what the current thinking was re PPS, talking
about the need for gentle exercise using the
50% rule.
Her talk went on for
half and hour or so, and she described the
effects the polio survivor may suffer from in
later life, possible ways to improve the
situation, and things that should be avoided.
The current thinking
is to exercise to approximately 50% of your
ability, meaning that if you could normally do
10 squats before feeling tired, then limit
this to 5, waiting a few minutes then continue
to do the rest, so avoiding the ”burn”.
This seemed to the best way forward, and was
seen to benefit people that may be suffering
from PPS, she emphasised avoiding strenuous
exercise, as this would certainly damage an
already fragile nervous system, and could make
matters a great deal worse.
After her talk she
took loads of questions from the audience,
many subjects were covered, but few common
themes quickly emerged: -
Firstly, a lot of
people expressed their frustration at not
being able to speak to an expert in the field
of PPS, as the late effects of polio were
little understood by most GP’s, some even
dismissing it completely, and that for most
GP’s contact with polio patients was very
limited indeed, and my doctor also has only one
polio patient on his books, and that’s me,
and this seemed to be the case in most areas.
Secondly, many people
found it very difficult to get a referral to
the Lane Fox Unit as a lot PCT’s were
unwilling or unable to fund the treatment
there, and it seemed that it depended far more
on more where you lived, than the actual need
for the referral.
I do hope to be able
to put the whole talk onto this website soon.
This was the first
talk I had been to on the subject of PPS and
was surprised by the number of people who
turned up for the talk, over 170 people
attended and most like me were in later years,
experiencing a certain level of deterioration
of the muscles, and wanted to know what to
expect in the future and what could be down to
slow down the muscle weakness and improve
matters.
After the discussion
on PPS the meeting was opened to the floor for
any other general questions people wanted to
ask the fellowship, as many of the head office
staff were at hand to answer most of the
queries there and then.
The Fellowship had
also laid on buffet meal, plenty of tea
and coffee in a pleasant but slightly crowded
hotel. All in all a good experience and many
thanks to the speakers and for all those
involved in the organisation.
by Robin Stephens
Click
here to listen to the forum
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