Bewildered

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joan2831
1

I had polio when I was 18mths old , now in 64 and the last few years have been really bewildering .

My muscle strength in my arms has changed ,my affected leg has gone so weak.

Last night I was shopping and I thought I would not make it around the shop. After a good rest I was so much better , but the strength in my arms does not change much.

My daughter found this site for me as I don't understand what is happening. Ok I know I will get worse with age but when it's actually happening, well it can be scarey.

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9 Replies

  • Posted

    Hello Joan,

    I too was just 18 months when I had polio in my left leg.  When I was 50 my doctor said I had "post polio syndrome" and I had to give up working as stairs were too difficult.  I am now 73 and am much worse.  I walk with a cane, which helps me greatly.  I cannot give you good news I am sorry to say as there is not much that can be done.

    I don't know where you are, but in the U.K. the British Polio Fellowship has loads of help - a marvellous organisation, with loads of books and meetings arranged in most areas.

    You don't say if you are in pain, I hope not.  

    Part of the body which were not actually affected by polio initially can become weaker - trouble is many people think it is just age.  Exercise should not be taken much, swimming being the best excercise you can do - don't believe the common say "use it or lose it" - we need to conserve to preserve....

    Please write again if I can help in any way.

    Good luck, Marion x

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    • Posted

      Hi Marion.  I’m in the same situation as you.  I’m now 60 and got the original polio virus at 18 months.  

      I’ve  had the effects of pps since my mid 40s. It’s not easy is it? It’s a downward spiral that can be very frustrating..  I’ve has the same advice as you about exercising.  It can actually cause more problems..  

      if ever you fancy a chat, let me know. X

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    • Posted

      I would be pleased to chat.  Would you like to give me a number, and tell me what time of day is good for you?  I do not surface early!!

      Marion

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    • Posted

      Hello, Marion,

      i don’t think that I’m supposed to put my phone number on here, as it can be seen by anyone.  

      You made me smile when you said that you don’t surface early..... neither do I. X

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    • Posted

      Hello smcg - what an odd name!!!  All right, chat on here if you prefer.

      Having had PPS now for over 20 years I have learned a little about it.  I go to the Lane Fox unit at St. Thomas's who are good, but I have had a great deal of info from the British Polio Fellowship, they help so many people.

      Good to hear of someone else who is not keen on mornings!

      Marion x

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    • Posted

      Hi Marion, I’m Sue..... the code was given when I joined the group.  Generally speaking, I don’t really ‘do’ mornings, unless there’s an important appointment.  I’ve had loads of surgery over the years, to fix me up and keep me moving.  When pps hit me, over 15yrs ago, it was a bit of a surprise as I’d never heard of it before.  My orthopaedic consultant told me about it.  I’ve never seen anyone who specialises in it.  It’s only through this site, that I recently learned of a support group in Liverpool, which is about 15miles away.  

      I was a teacher for 24yrs. I had to leave due to the deterioration in my health.  At present, I spend a lot of time lying down (more comfy for my back) reading.  I get through 3 novels each week.... thank goodness for the I-pad!  I like soaps and dramas on tv, and enjoy a bit of crafting.  I make bits and bobs for our local pre-school to sell at their functions.  It keeps me busy and earns them money so all is good.  My big pleasure is being with my two gorgeous grandchildren.  What keeps you busy and makes you smile? 

      Sue. X

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    • Posted

      Thank you Sue - I was only teasing as your last message still gave those initials, not your name!  I was wondering whether you were male or female...You are a long way from here!

      I am just the same about mornings, and feel quite cross if I have to go somewhere before noon.

      I don't watch soaps, but enjoys dramas too, and quizzes, plus anything with antiques before sold or discussed.  My hobby is buying lovely clothes.  My area, in Surrey is very beautiful, used to love going to London but legs will not carry me far these days, sadly, but at 73 I just feel really lucky I was all right when younger.  Hate getting old...

      Don't do any crafting, but it must be great to be artistic - I just love looking at beautiful things.

      Have a good weekend, enjoy the children,

      Marion x

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  • Posted

    Hi.... I replied to you earlier, but it seems to have disappeared!

    like Marion, I also had polio aged 18 months and now have Post Polio Syndrome.  

    Symptoms can mimic those of aging but they come earlier.. Areas that were originally unaffected become weak and the original polio site gets considerably worse.   My right leg was originally affected.  Now my hands, arms, back and neck are also troubling me.  Your muscles grow very weak.  A further symptom is deep fatigue. The condition is degenerative. There is no cure, but pain can be managed with drugs.  I currently take two types of morphine and Pregebalin.  

    Pits not the bes5 news that you’ll be given, but it’s best to know what you’re dealing with. The best advice that I was given was to “Be kind to yourself”.

    if I can answer any specific questions for you, I will.

    please let me know if I can help or support you.  

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  • Posted

    Hi Joan, I have been a member of a post polio support group since 1995 and I know that the affects can vary greatly. I know one guy who walked all of his life with crutches but now requires a wheelchair, another had only a slight limp and was active all of his life. Today he can't lift his arms above his head and uses a scooter. I contracted polio at 3 yrs old and have not had significant increase in muscle loss. I walk with a leg brace and use a cane, and sometime a scooter if distances are too long. I struggle with fatigue, the number one qualifier for disability I've heard. There is a lot of literature on the Internet. I appreciate this thread. The motto at my group is "we are all in this together". Looks like there are some good people here. Thanks for posting. 

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