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post-polio syndrome

Cranky_1959Cranky_1959 Member Posts: 2 Listener
edited April 2019 in Disabled people
Hi, my name is Cranky_1959 and I'm new to this site. I had polio in 1960 when I was 6 months old.  It would be really nice to chat to people who have post-polio syndrome and who like me suffer with chronic pain and how they cope with the pain.

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,753 Disability Gamechanger
    Hi @Cranky_1959 welcome to the community! We do have a few members who suffer with PPS, @dernie1, @16golf, @colinw, @SteveH, and I'm sure they will be happy to get in contact to offer support.

    Have you contacted the British Polio Fellowship?
    Disability Gamechanger - 2019
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,003

    Scope community team

    Welcome @Cranky_1959! Ami's offered some great advice and I hope you'll stick around and get involved on the community. :smiley:
    Community Manager
    Scope
  • Cranky_1959Cranky_1959 Member Posts: 2 Listener
    Hi Ami and Adrian, thank you for welcoming me to your community.  I don't always feel physically well enough to come on-line, but when I do i'll be sure to say 'hello'.  
  • raffiraffi Member Posts: 2 Listener
    Hi Cranky_1959. I’ve just joined this community and saw your post. I had polio in 1957, when I was two and a half, and have quite severe disabilities as a result, I guess, of postpolio syndrome. I have rarely met any other people who had polio, so it has been good to meet them online in various groups. I just wanted to say hello!
  • exdvrexdvr Member Posts: 327 Pioneering

    @Cranky_1959  Hi and welcome to the Scope community.  There aren't too many left like us who suffer from the after effects of polio so yes it would be good to talk.  In my case I had polio in 1950 at age of 2.   I struggled through my adolescent years and eventually found a not too physical job which served me well enough until just over 15 years ago when a whole load of health probs set in, not all to do with polio.  On the scrapheap at 55.

      Main thing is that now the legs are totally shot and mobility is at absolute zero but getting the medics to officially accept the existence of PPS is part of the problem.  Most of them have no knowledge of the disease and just pop out the painkillers.  Maybe hoping we'll just drop off the perch and the problem will have gone away??

    Would be happy to chat anytime.

    Best wishes.

    DLTBGYD

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