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Post Polio Syndrome

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tony08822
tony08822

I contracted polio at the age of 12 months during the 1947 outbreak in the UK.  At the time my legs were affected as well as my left arm.  The legs recovered but I have grown up with no deltoid and biceps muscles and a restricted use of the arm.  I have always maintained that, if I was going to catch polio, having it at such a young age was an advantage in that I grew up with it and learned to find ways round the disability.  In fact the only thing that it prevented me from doing was playing the guitar but I learned the harmonica instead and I have a son who is better on the guitar than I would ever have been,

But here I am, aged 71, and I have just been told that I have Post Polio Syndrome!  I have been experiencing some (slight) pain in my left hand and, of more concern, I am losing use of the hand.  I have read the accounts on this site of experiences of PPS, many of which describe pain and loss of mobility in the legs and am wondering if any one out there can give me some advice on what steps I can take to mitigate the deterioration.  Any ideas?

Also, what chance is there that my legs may start giving me trouble?  The specialist I saw seemed to suggest that PPS could affect any limbs that had shown signs of polio.

Thanks for your help and advice. 

1 like, 6 replies

6 Replies

  • joan2831
    joan2831 tony08822

    Posted

    Hi Tony ,

    When I first had polio my mother said my back ,side of my neck looked slightly crooked,after my flu like symptoms it settled in my left leg and it was really weak .

    I had my foot fused in three places and my tendons moved to try to straighten my foot also operated to help with the circulation in my led as I used to get chilblanes that formed sores ,and that was in the summer.

    Now my arms are effected especially the last two years.i can lift up but cannot lift above my head without a great struggle or lift a light weight down,even to empty a pan to a plate is getting really hard.

    I am going to my annual meeting with the post polio clinic in Liverpool next month , this time I am going to write down questions to ask .

    I , like you would rather be prepared and keep myself preserved 😊

    • smcg3182
      smcg3182 joan2831

      Posted

      Hello. JOAN.   I live in Widnes.  I didn’t know that there was PPS group nearby.  Could you please share the details with me?   Thank you very much. X
    • joan2831
      joan2831 smcg3182

      Posted

      Hi, it is Walton Neuro centre and it's a clinic that I attend every year. I see professor Young ,she is really nice ,they check your weight and breathing and generally keep a check on things .

    • smcg3182
      smcg3182 joan2831

      Posted

      Thanks Joan. I’ve never seen a polio specialist.  All my surgery (a LOT) has been done in orthopaedics at Whiston and Warrington.  I know that a lot of people had lung problems when they contracted polio, did you?  With me it was originally just my leg, although now I can be affected all over the place.  Why do they check everyone’s breathing? Please don’t tell me that I’m likely to get trouble with that too.  

      Nice to hear from you. 

      Sue. X

  • michael89833
    michael89833 tony08822

    Posted

    Hi Tony, I have many friends with pps. I am a polio survivor, contracted 1955 at age 3 in the USA. I belong to a post polio group that invites specialists to meetings to discuss pps issues. The recommendation for pps that I have heard is mild exercise, but never so much you cannot recover in one day. I have one friend who when he started to lose strength increased his workout routine and he now believes that overexertion contributed to more sever debilitation. There are post polio support groups all over the world and the Web is great resource. We are a dwindling population. I suggest a good place to start is Dr. Bruno's Web Site. It has some good information. http://www.postpolioinfo.com/bruno.php Good luck and I hope to see you here again. 

  • smcg3182
    smcg3182 tony08822

    Posted

    HibTony.  I got polio in 1957 aged 18months.  The main issue was with my right leg.  I had numerous surgical procedures to correct things and, as a result, managed vey well. The disability didnt bother me too much as I’d never known any difference.  I now have PPS and am experiencing weakness in joints and muscles not originally affected.  Apparently that’s quite common.  Doctors admit to knowing very little about PPS as there are not many cases.  What I have been told is to listen to my body and not overtax myself.  They reckon that if we go mad and try to exercise in order to build muscle that we’ll do more damage, and wear out what muscle strength we have.  The condition is degenerative and can not be stopped.  We can, however, learn to live with it and accept our limitations.  

    I don’t know if this has helped you or not..... I wish you well for the future.  

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