The British Polio Fellowship
Worthing & Sussex Branch
Registered Charity no. 1108335

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June 9th 2007 PPS Forum

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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 wasnít 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. Thomasís 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 ĒburnĒ. 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 GPís, some even dismissing it completely, and that for most GPís contact with polio patients was very limited indeed, and my doctor also has only one polio patient on his books, and thatís 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 PCTís 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  

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PPS Forum at Crawley

    

Chaired by Bob Stephens

 

Alex Curtis from the Lane Fox Unit

Bob Stephens, Alex Curtis, Graham Ball  

  Mary Gilles

 Lunch for everyone

 Coffee as well

 

   

 Jim Tidy

Barbara and June
Ann and Robin
Afternoon Q&A
 
Ottobock

  The man from ottobock was there

Click here for their website