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  1. #1

    Post Polio Syndrome

    I am looking for info on PPS and also a good doctor in Southeast Florida who has expertise in this area. My friend is suffering terribly right now. Any help or guidance would be most apreciated. I know very little about PPS and want to learn all I can to help her. Thought I first would start here at CC.

    Thanks,
    Pam

  2. #2
    Senior Member BeeBee's Avatar
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    Also try New Mobility. Every month they have a section devoted to PPS.
    BeeBee

  3. #3
    Princess,
    How old is your friend? Has she been diagnosed..and who diagnosed her?

    It is quite an extensive procedure to rule out any other possible causes. And you do want to do that.

    There is no real expertise in regards to this syndrome
    I don't think. It varies as much as the disease itself and it's initial post problems.

    I don't know any resources in your part of the country..hope someone here can help you.

    There is alot of information on the net..just have to sift through it..and find what is applicable to her unique situation.

    And finding the right doctor to advice you..is a real hunt..they are out there. But some are like a drug store..where others will try to listen..and work with you. Rare find though.

    And usually if you are on an HMO..they are not..so will require private financing.

    Is your friend a paralytic type? Bulbar? Both?
    Is her terrible suffering you mentioned mostly pain?
    Or a combination of many things?

    Is she ambulatory? How affected was she?
    I know not much help here..but there is some help available.
    Is she on the forums?
    Life isn't about getting thru the storm but learning to dance in the rain.

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Princess "Leia"
    I am looking for info on PPS and also a good doctor in Southeast Florida who has expertise in this area. My friend is suffering terribly right now. Any help or guidance would be most apreciated. I know very little about PPS and want to learn all I can to help her. Thought I first would start here at CC.

    Thanks,
    Pam
    Pam, I'm sorry I've been on vacation thelast 2 weeks.

    My original doc in rehab at the National Rehabilitation Hospital in Washington DC was Lauro Halstead. Dr Halstead is an expert in PPS as he suffers from it. He's wriiten several books and articles including Managing Post Polio Syndrome. It runs about 250 pages. You can find just about everything you need very easily by clicking on WWW up above in the Google search area and type "Lauro Halstead" with quotes in the search block.

    And yes, if you get the print copy of New Mobillity Dr Bruno has a monthly column on polio and its after effects.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    Thank you all for the help. This will give me a great start and hopefully guide me to a good doctor as well.

    My friend (70 yrs old) was diagnosed with PPS years ago and had polio as a young women. She was told there was little she could do and has not seen a doctor in years. At this point her walking is becomng ever difficult, she has fallen twice (without reason) and now uses a walker. She also has pain.

    Locally the doctors here leave much to be desired and I did tell her to go to University of Miami. It is where I go for treatment. She is aware of the local MD's short comings too. I am also looking into Shands for her.

    Will keep you posted and thanks again,
    Pam

  6. #6
    But is it any treatment for PPS?
    TH 12, 43 years post

  7. #7
    Quote Originally Posted by woman from Europe
    But is it any treatment for PPS?
    The treatment is mostly compromise and accommadation IMO.

    Now with the initial post-polio..there were REAL treatments. Orthopedic treatments that did improve your situation greatly sometimes.

    Physio to were you saw improvements.


    Over fifty years later..there is less to offer. I understand it..don't like it..but understand it.

    With the numerous surgeries and the dedicated physio..it was excrutiating and gruesome..but damn you saw improvements.

    Very disappointing that this syndrome wasn't recognized many years ago..and maybe then we would have something more then this type of treatment available today.

    I've read were Dr. Wise doesn't want the care to be like it was with us old polios..ironic to me in a way.
    The care today is nowhere near what it was for us in the past really..at least then the medical profession tried..and often was successful in helping us be physically better. It wasn't fancy or even sometimes tolerable..but you were going uphill..instead of this downhill race to nowhere. JMO
    Life isn't about getting thru the storm but learning to dance in the rain.

  8. #8
    Lindox

    In Norway we call it a two-edged svord. I do not know what is the best. I exercised until I was ready to die when I got my SCI, because that was the way they did it 36 years ago. But I did walk in the end after months of physiotherapy and hard work. And then after 30 years it started to go downhills.

    But when I see the way the treatment is now, I think I would never have made it. So I am grateful for all my physiotherapy and all the years I was able to walk. Because it looks like I would have been in a chair anyway, 36 years after.
    TH 12, 43 years post

  9. #9
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by woman from Europe
    But is it any treatment for PPS?
    From what I can find there really aren't any real treatments. I found one current clinical trial but it is to study people with PPS and if there is a change in the cerebral cortex and/or brain stem versus those who had polio but are not experiencing PPS. Seems some autopsies done on people who had been clinically diagnosed with poliomyelitis and who recovered but decades later had symptoms related to PPS had damage in their cortex or stem but those who recovered and did not experience PPS showed no changes inthe brain. Sorry.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #10
    Senior Member medic1's Avatar
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    Both of my parents have had polio and both are suffering the post polio syndrome. Does not seem like there are a whole lot of options out there. As for the treatment from years ago, I think my mom would greatly disagree with treatments that worked. She has horror stories of boiling hot towels being placed on here affected leg. Stories of being left in a hospital bed for months and months and spending time in a body cast. Her left leg is fused at knee and ankle. My dads leg stopped growing and looks like a little kids leg. It is awful to see the effects of it, yet I know they are both lucky to have survived it. Just sucks that they have to suffer again from the same disease.

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