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Me and Polio........and then PPS

Posted , 6 users are following.

evelyn33164
evelyn33164

Hello all......I took Polio at 11wks of age in 1954, in a wee town in Scotland.   I was affected from the neck down.....its still hard to lift my neck!    After all the necessary ops on my back and legs finally I was left with a caliper on right leg and a walking stick!      

Then just before I was 45 I started to feel different,  had to take naps while driving anymore than 25 miles....just couldn't understand what was happening to me.....having to sleep in lay-bys....feeling so tired....and falling asleep in mid conversation.....at first I was told I had sleep apnoae......then in about 2005 when people couldn't get me to stay awake I was finally diagnosed with PPS.....it was such a relief to know what was wrong with me......and now I spend most of my life in bed....having to use a breathing machine with oxygen.......so I feel like am right back to where I started 63 yrs ago.......

Please don't get me wrong I had a very fulfilling and happy (ish) life.....I was married have a lovely 39 yr old son and an absolutely gorgeous grandson,,,he'll be 9 very soon.....

Life for me is easier in bed, unfortunately,  because my arms have always been weak and are now much weaker.

Generally am a very happy person...love to laugh at life, and always try to see the funny side in any given situation.....and yes, I do have a wicked sense.....living with PPS I have discovered that a sense of humour is of the utmost importance!!

I do hope more of you will share your story.....what I have just written is not my story......just the bare facts, really!!

Thanks for reading....

0 likes, 13 replies

13 Replies

  • mu49985
    mu49985 evelyn33164

    Posted

    Hi Evelyn,

    I had polio in 1970 when I was 9 months old. When virus hit me, my entire body was like a noodle. Absolutely no strength or life. I also got extremely high fever and Dr gave injection on my left hip (which had damaged main vain of the leg). Fever came down and with months and months of different treatments, my whole body was recovered except for left leg.

    I am 49 yrs old and always run into lower back pain, left knee pain. Left leg being weak, right leg took a tall. These days, my right hip is giving up. I did lots of research and apparently "Medical Medium" - a book any Anthony William is saving my life. This book talks about virus and what food can help us to remove them.

    These days, I am following diet plan as this book. Starting my day with celery juice and then detox smoothie and all.

    Just wanted to share with everyone that this diet plan, along with water-exercise helps me TREMENDOUSLY!

    I am very much certain that - I will be able to keep up with health and life!

    Hope this helps!

     

     

  • patinauburn
    patinauburn evelyn33164

    Posted

    Evelyn. I’m a 68 year old grandmother of 2 and contracted Polio at age18 months old.  I spend the majority of my time in bed like you do.  My Polio affected mostly my left leg: nothing like you experienced.  However, what caught my attention about your post was the severe fatigue.  I was diagnosed with PPS about 10 years ago.  Since then my balance is all messed up and my arms and legs have become very weak.  The one thing that I suffer from is lower back pain that only worsens the longer I am up on my feet.  But, the fatigue is really bad.  I usually don’t wake up until around 4:00 pm.  Basically I feel as though I’m sleeping my life away!

    What makes me crazy is I haven’t been able to find a doctor that specializes (or even has heard of (PPS).  

    I hope you feel as well as possible.  Your post was so important to me because sometimes I feel like I’m the only person on the planet with PPS.

    Take care.

    Pat Whitman 

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • marion02844
      marion02844 patinauburn

      Posted

      Hello patinauburn,

      I do so agree about the fatigue.  I  was so lucky to have had a Doctor who recognised PPS in 1994 - amazing luck.  The fatigue is horrid.  Please read my message to Evelyn when you have time.  I too had polio at 18 months, I am now 74 and really struggling.

      The Lane Fox unit at St. Thomas's hospital are the  London experts on polio, and there is a Polio Fellowship - they are very helpful.  I don't know if you are is the UK are you?  If so there is a great deal of information available all over the country.

      The sleeping a lot is part of the pattern, just so sorry you feel so poorly.  I read that when the fatigue takes over you reach a "polio wall" and just have to sleep.

      Wishing you well,

      Marion x

  • richard04103
    richard04103 evelyn33164

    Posted

    Evelyn - Thank you for posting. And, thank you for your positive outlook. I had polio in 1953, and was in an iron lung for most of the next 6 months. When I left the hospital I could walk with braces (calipers) and my arms were weak but functional. After 30 years my warrantee ran out and I had to have a tracheostomy. I also use an electric wheelchair. But, like you, I have had an enjoyable life.

    I am concerned about your use of oxygen. If you are using a ventilator (breathing machine), most polio survivors don't need oxygen too. Do your doctors tell you why you need oxygen?

    • evelyn33164
      evelyn33164 richard04103

      Posted

      Hiya Richard.....I been sitting here wondering how to explain to you.....many years ago when they thought I had Sleep Apnoae...there was no improvement in my health so my GP referred me to a ventilation doctor...he sent his assistant to see me on the Thursday and the net Monday he was in my house telling me I had PPS and at that point I was very ill......he told me that my SATS were only 67, when they should be in the high 90's.    He told me that it was to do with carbon dioxide in my blood (too much) and that my right lung isn't working good at all....he said I must use a machine and a full face mask to sleep or I coul just conk out!!     And I do have an oxygen tank in my wardrobe as a spare.....and with my machine I have a concentrator!     

      Does this make it any clearer....I hope so!

      Enjoy your weekend!

  • Sueplay2
    Sueplay2 evelyn33164

    Posted

    You sound very positive, more so than me sometimes ! I moan for England me !! Still trying to find a doctor that know anything about the condition, but hey ho, will get there eventually. I got polio in 1956, my mother thinks i got it at the same place as the great Ian Dury !!! Never ever thought though that polio would be the gift that keeps on giving !!! #i wish you well and once i' get the hang of this computer marlarky, hope to be more active in the group.!! Bless you xx

     

    • marion02844
      marion02844 Sueplay2

      Posted

      I just love your remark "the gift that keeps on giving"  How true that is, unfortunately, but isn't it good that we can laugh at ourselves!!

      Best wishes Sue,  Marion

    • evelyn33164
      evelyn33164 Sueplay2

      Posted

      Hi Sue.....how are you?.....Yes our GP's need to be educated on PPS...and damned fast too!   Mine knows nothing about it and believe me that gives me no faith in her whatsoever.     Do you know other polio survivors that you're friendly with?

      Enjoy your weekend Sue...xx

       

    • evelyn33164
      evelyn33164 marion02844

      Posted

      Hello Marion......my goodness I truly believe that having the gift of being to laugh at ourselves is kinda like having our own personal safety net.....I hope this makes sense....I know what I mean but not sure if I've used the right words or not!       Oh my brain is just not what it used to be....lol.....

      I hope my message finds you well and happy Marion

      Enjoy your weekend!

    • marion02844
      marion02844 evelyn33164

      Posted

      Hello Evelyn,

      I wrote a long message to you yesterday, tried to send it, but it disappeared....bother.

      I had polio aged 18 months in 1946 and coped quite well until I was 50.  I had a limp, my left leg is one and a half inches shorter than my right, but I was a fighter like you.

      I was very lucky when I was 50 in that my Doctor immediately diagnosed PPS - bearing in mind that was 1994 and many doctors had not heard of PPS.  I had to give up work, but was then able to look after my Mum, which was perfect.

      My Scottish friend was pleased to leave Hamilton when he was 16, he went to Hamilton Academy - he is a clever clogs!  Unlike me - I was a good business person, but no good at studying and hated school.

      You have had far more problems than I, and you sound great Evelyn.  

      Wishing you well,  Marion x

  • marion02844
    marion02844 evelyn33164

    Posted

    Hello Evelyn, glad you told us some of your story, you really are a fighter.  I am sad that polio and PPS have caused you such problems, lovely that you can laugh.  

    I too, have had a wonderfully happy life.  I know many people think that if you have not produced your own family you have lost out.  My joy in life came from sharing it with my Mother Kitty, who died 15 years ago (my father died in 1966) - she and I were soul mates.  I worked really hard, she loved looking after me, the house and the garden.  I took her on so many holidays, first in Europe, than 14 times to the USA.  We were so happy with each other, and it does make life a bit sad now, but I have some great friends, and a brother and niece in Somerset.  My current man friend is from Hamilton.  

    With regards to PPS - I had so much pain until I was prescribed Pregabalin, which helped a lot, but the pains have started to return.....I have had nearly a year without much pain, what a difference it makes to life.  Walking is getting impossible, and I have to rest a great deal.Could be worse!

    Let us know some more about you when you have time.

    Best wishes, Marion x

    • evelyn33164
      evelyn33164 marion02844

      Posted

      Hi Marion...you're not gonna believe this but I have just sent you a wee message about laughing at ourselves then pressed the send button, scrolled a bit further down, and lo and behold I found your lovely message to me.....thankyou m'dear its a lovely surprise!

      I love how you say that your current man lives in Hamilton.....to me that wee statement oozes in Joie de vivre.....am smiling from ear to ear...:-)....

      When did you contract Polio Marion?  and at what age?

      I shall leave you enjoy your weekend

      Take care

      Evelyn...xx

       

  • richard04103
    richard04103 evelyn33164

    Posted

    Evelyn - Thank you for giving us more information about your pulmonary issues. This is very helpful. Many polio survivors are experiencing breathing issues, and they might not know this is why the feel so fatigued. Unfortunately, many physicians are also unfamiliar with the issues. Most physicians see many COPD (chronic obstructive pulmonary disease) patients, but very few patients with breathing problems because of a neuromuscular disease like polio. Please check the link below http://www.polioassociation.org/Oxygen_articles_in_Rancho_PPSG_newsletter.pdf

    Print it out and show it to your doctor. Stay well.

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