I contracted polio in 1956. OK for years. PPS for last...

Brain and nerves
1

I contracted polio in 1956. OK for years. PPS for last 13 years or so. I was lucky that I heard of the Lane Fox Unit, at St Thomas' Hospital in London, and my GP referred me there for assessment. My comments to anyone experiencing PPS would be:

1. Learn what you can about it from sites such as this, the

Lincolnshire Post Polio site, etc. Or a doctor who knows about it.

2. Don't expect your GP or other medical people necessarily to know

anyhting about it - when seeing a GP or hospital doctor, surgeon,

anaesthetist, etc go armed with information (preferably something

written by a doctor, from a website or medical journal)

3. Do learn to pace yourself - it really is worth getting to know how

to rest. If your hobbies, activities etc are strenuous - change

your activities. Find something else to do. Or learn to do it

differently e.g. different tools for gardening, raised beds etc.

It's hard, I know,if you've always been vigorous and active - as

many 'polios' often have been - but accept you can't go on the way

you always have done. But you can still go on.

4. Accept 'aids' - wheelchairs, callipers, sticks etc. Yes - another

hard thing to accept. I resisted using a wheelchair for a long

time - it felt like admitting defeat, failure, something or other,

but now I use a chair, have an adapted car, and it has made me

independent, far more so than those people who prefer to 'struggle

on'.

5. Don't give up. And remember - always practice safe sex. Make sure

your wheelchair brakes are on.

This message was automatically imported from the original Patient Experience

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I agree with you. We need to pace ourselves and remain positive.

It's not always easy, as we have a large variety of symptoms to cope with, and there are very few people who understand our condition.

3

I agree with you. We need to pace ourselves and remain positive.

It's not always easy, as we have a large variety of symptoms to cope with, and there are very few people who understand our condition.

4

So agree with all the comments.  I was diagnosed with PPS about 14 years ago.  I was very active until then.  Now use a crutch & have a wheelchair for longer 'walks.'  My GP does not, or will not understand my condition.  I am lucky enough to attend Lane Fox unit at St. Thomas' hospital.

 

5

Hi Guest

Can you tell us what benefit you gained from being referred to the Lane Fox Unit please?

I am aboout the same age as yourself and had Polio at the same time. However, I am not convinced that PPS brings a second 'wave' of paralysis, as I've heard it called. I do have more difficulty doing some particular things such as getting up out of a chair, bending back up straight, I rely more on my crutches for walking than before but I put these down to natural ageing and the slight extra weight I now carry.

I agree with all your advice and I would be very interested to hear your opinion of how PPS has affected you, if there are new things you cannot do that you could before or if it could be explained by simple ageing.

I have managed a referral to a Rehabilitation Consultant at the Oxford Centre for Enablement at the Nuffield Orthopaedic Centre, Headington. To my utmost surprise and disappointment he treated me like an old man who simply needed to do a few exercises to retain his mobility. I got discount vouchers for a local gym!! As for advice whether polio-affected muscles can be restored with exercise he was vague and evasive. Wish I'd not bothered....

By the way, do you find more opportunities for safe sex now you use a wheelchair? Maybe I'll get one