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Is it always as quiet in here???

Posted , 6 users are following.

evelyn33164
evelyn33164

I joined this group last night (Friday 27/7/18)....but there has been absolutely no sign of life....or have I just picked a bad time???

I would love to get to know some like minded folk....and other PPS sufferers....

1 like, 7 replies

7 Replies

  • jack82755
    jack82755 evelyn33164

    Posted

    Hi,

    Yes, it is usually quiet but once in awhile you will see a flurry of comments.

    My name is Jack, living in Sacramento,Ca.

    I am 66 and a polio survivor. I had several surgerys on both legs and feet as a child and also braces but once a teen I stopped braces. Now go to 1984, I started falling down. Not to present time, I've been falling,pain is worse than it's ever been. Someone joking around said my 40 year warranty ran out. Anyway, that is my story. What's yours?

  • marion02844
    marion02844 evelyn33164

    Posted

    Hello Evelyn,

    There is often quite a bit of activity - there should be some old messages you can access?  If not, I will talk to you!  I am 74 and had to stop work (It involved going up and down stairs) when I was 50 due to PPS.  I had polio when I was 18 months and my left leg is shorter than my right by one and a half inches.  I have always managed without a caliper or brace, but now I find it very difficult to walk or stand.  I use a cane to walk a small amount, but am looking at scooters etc.  I do get a lot of pain, and nothing improves with age!

    There have been loads of messages on here about Kafo's but they are so ugly, it seems to me....

    Some people on here are in the US, but I have had notes from fellow sufferers who are in the UK - I am in Surrey.

    Please write again if I can help,

    Marion

    • danila48540
      danila48540 marion02844

      Posted

      Hi Marion , i have pps . I live in Portsmouth England . I am 66 . I had polio when i was 4 .i have been looking for something like this . As i feel people do not understand . And i feel lonly and sad.  I would welcme a chat . Regards Dee 
    • marion02844
      marion02844 danila48540

      Posted

      Hello Danila,

      Thank you for your message - would love to talk some more to you, and you are not far away down the A3....

      People do not understand our problems, and I feel I am boring people when I talk about it.

      I am usually quite happy - I live in a lovely bungalow and have a very sweet dog as my best friend.  I do quite a lot, so far, but realise this will not last, and I never know whether it will be a good day or not.

      I too feel lonely and sad today, really so sorry you do too.  When my physical problems are worse my mental state suffers too.  Do you find that?

      Tonight I am working in a local Hospice, funnily enough that always makes me feel better!

      Best wishes,  Marion x

      By the way I am 74

  • richard04103
    richard04103 evelyn33164

    Posted

    Evelyn - Most groups like this one have periods of activity, followed by periods of no activity. I suggest that you post a question, or perhaps post about your own experiences with polio. An educated guess would be that you will receive many replies.
  • danila48540
    danila48540 evelyn33164

    Posted

    Hi, imDee .i also suffer from pps . I contacted polio when i was 4 . It left me with upper body disabilty . Its now come back to really bite me on the bum . I am so glad that i didnt know what was coming . I would welcome achat as i dont realy think people understand what we are going through . Regards Dee
  • Nell1301
    Nell1301 evelyn33164

    Posted

    Hi Evelyn, I found out that I am suffering with PPS, About 3/4 years ago, I am under a brilliant Dr at St Thomas in London.There is unfortunately nothing can be done, But you PACE yourself on everything you do. I.e. shopping, walking, housework etc. I find that if I'm out shopping after 10/15 mins I feel so Fatigued, that I have to stop sit down go have a coffee. I find that if I ignore these symptoms of Fatigue, it really plays on me the end of the day and the next. Listen to your body. I have had a Total hip Replacement 2 years ago, and I am now 7 weeks post op from Total Knee Replacement. At the moment my right side which I had the Polio on is extremely weak . Hope to God it strengthens up a lot more, even tho I'm having Physio,. By the way Knee was on Left side. If you need a chat let me know x

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