Post-Polio Syndrome, A New Condition for an Old Disease

 

Even though Jonas Salk’s vaccine beat the polio virus into submission in the 1950s, the U.S. still has more than 400,000 polio survivors and up to half of them have post-polio syndrome (PPS). A National Institutes of Health website defines PPS as “a condition that affects polio survivors anywhere from 10-40 years after recovery from an initial paralytic attack of the poliomyelitis virus.”

PPS symptoms can include further weakening of polio-affected muscles, fatigue, joint pain, muscular atrophy, and difficulty in swallowing.

“I remember (getting polio) like it was yesterday,” said 67-year-old Dick Baumer of Owatonna, Minn., in a telephone interview, referring to being age four. “It was 1944, and I was coming home from school (in Wisconsin) with my sister and had been feeling yucky. I was a half block from home when I fell down and couldn’t get up.”

A family doctor immediately referred Baumer to a hospital in Madison, Wisconsin, 180 miles away. Baumer heard his mother screaming with fear as he was placed in isolation at the hospital. He was paralyzed from the waist down.

“Then I was at the Sister Kenny Institute about six months,” said Baumer. “I was wrapped in hot rags (for treatment). When released in April 1945, I was only able to crawl and support myself for short periods of time.”

By early 1946, he was gaining strength and walking again. Baumer eventually graduated from college, then lied about having had polio to join the Air Force. No one even suspected.

Today, he deals with muscle weakness in his right leg, and has sleep apnea, not uncommon for people with his type of polio. He also recently had knee surgery.

Said Baumer, “I was one of the founding members of (a state post-polio awareness and support society). Its mission is to educate people about post-polio syndrome and help them get in touch with organizations that provide services and support. But the most important aspect of the group is to educate.”

He said one major problem currently facing people with PPS is that most physicians under age 50 don’t know that much about polio.

“If you are having physical problems, be sure to look up a support group,” said Baumer. “There is no cure for PPS. As for advice, we tell people to conserve their energy in order to preserve a decent lifestyle.”

For more, see danieljvance.com [This column made possible by a grant from Blue Valley Sod, www.bluevalleysod.com]

  • Amanda May

    I talked to my drs after I had found this post. My mother was never diagnosed with PPS that any of us 6 kids know of, but my drs all said that unless she was pregnant during PPS, the chances are very slim of any autoimmune issues arising from it.
    You can look me up on Facebook if you’d like April!! I’m at Facebook.com/harleyfairy and listed as Amanda Wolfe May

  • April

    I am born from a mother with polio. I would love to discuss this with someone as I have had issues that it hard to describe to others.

  • Amanda May

    The other day I joked/commented to my sisters that all of us should have seen a rheumatologist as a child as we are now all falling apart. That’s when it hit me that there *might* be a correlation between my mother’s polio (she was 4yrs old in 1947 and it destroyed her left shoulder muscle), and all of us having some autoimmune issues of varying severity:
    RA, MS, Scoliosis, spinal Spondylitis, Fibro, bursitis, etc. (this is the extremely shortened version!!)
    anyone else born from a mother who survived Polio?

  • DebE

    My dad was born in 1923 and had Polio at age 5. He lost his 12 yr. old brother at the same time from Polio, as well. Dad was left with a lame left arm and an enlarged, thickened heart. He had his first heart attack at 55 (and a triple bypass), and another heart attack about ten yrs later (another bypass surgery). He had a massive stroke about ten yrs later. When he was in his mid-60’s he first heard about PPS, and believed he was having symptoms. The more he researched, the more he was convinced that Polio had been to blame for not only his reoccurring symptoms, but very possibly my brother’s Rheumatic Fever as a child, and my sister’s debilitating MS. He passed in 2002, and my sister in 2011. My brother has had two heart attacks. I’m the youngest and have had severe migraines for about ten yrs., a lumbar fusion, spinal stenosis, degenerative disc disease, and now, just recently, my right arm and shoulder are losing strength and causing severe pain. This has happened over a period of about six months. I’ve been getting Botox injections in my head for my migraines for three yrs.+/-. This is the first relief I’ve gotten from them. However, when I’ve suggested any connection to PPS with my neurologist and my orthopedic surgeon, they, too, dismisses it without any consideration whatsoever. I’m getting quite desperate, here, and somewhat afraid. Isn’t there any medical facility that takes this phenomenon seriously? I believe that my arm/shoulder and all my musculoskeletal problems are connected to my dad’s DNA in some way. I’ll be seeing a new dr. next week. We’ll see… I’m just so glad to see others exist out there that feel what I feel. — [email protected] — email me, plz…

  • SAR

    My Father had Bulbar Polio and was treated with injections and wrapped in sheets with some type of medication. I would love to hear from those children of Post Polio parents. My Rhenatologist told me it was impossible. I have multiple autoimmune issues. I would be great to hear more so I can pass this on to my child and niece.Please send me an email [email protected]

  • SAR

    SD, I just discussed this issue with a consultation I had today with a Rhematologist andshe almost laughed in my face and told me it is not possible. I received false information. I have mulitple autoimmune issues my entire life. If you have anything interesting to share please reach out to me. [email protected]

  • ScribblesDizzle

    I also have wondered the same thing, as my father was given a “test” vaccine and ended up with Polio at 13. In his 30’s, he was diagnosed with PPS. I am his oldest child, and have since birth struggled with severe muscle problems, scoliosis, and joint pain that they have called Fibromyalgia, Myofascial Pain Syndrome, Multiple Chemical Sensitivities, TMJ, and Chronic Fatigue Syndrome. I now have big problems walking and other issues, and have wondered for years if my father’s DNA was affected in turn affecting my health. If a virus can change DNA, why shouldn’t it affect the children of survivors of Polio? They have scientific proof that DNA is changed, so now they need to work on how it involves the children of those said. I hope they find out soon, because now my child is also starting to have symptoms as well. So far, that would be 3 generations affected by the faulty virus forced on my father as a teen, if this proves true.

  • Guest

    I also have wondered the same thing, as my father was given a “test” vaccine and ended up with Polio at 13. In his 30’s, he was diagnosed with PPS. I am his oldest child, and have since birth struggled with severe muscle problems, scoliosis, and joint pain that they have called Fibromyalgia, Myofascial Pain Syndrome, Multiple Chemical Sensitivities, TMJ, and Chronic Fatigue Syndrome. I now have big problems walking and other issues, and have wondered for years if my father’s DNA was affected in turn affecting my health. If a virus can change DNA, why shouldn’t it affect the children of survivors of Polio? They have scientific proof that DNA is changed, so now they need to work on how it involves the children of those said. I hope they find out soon, because now my child is also starting to have symptoms as well. So far, that would be 3 generations affected by the faulty virus forced on my father as a teen. We need answers, but are they willing to give them?

  • Elena

    Wow. Deedra’s comment struck a chord! My father also had polio, and I have been plagued with autoimmune diseases and other inexplicable health issues that are typically thought of as idiopathic – severe Scoliosis, for one – all my life. My autoimmune disease was originally diagnosed as Sjogren’s Syndrome, but recently, the diagnosis was broadened to include newly found AI markers for Lupus and Reynaud’s Phenomenon and now my official diagnosis is: Mixed Connective Tissue Disease. I would love to hear feedback on Deedra’s/my question from anyone who might either have further info, or a suggestion where I might find some.

  • Laura Miller

    I have Post Polio Syndrome, or PPS as others call it. I came down with Polio in 1953. It is not well know because of everyone believes polio is not around anymore. You can still come down with polio and also find out you have pps. Most doctors who do not know very much about the problem have missed it thinking it is MS. I have a group on Facebook “Polio is still around…help support people with it…polio and post polio”. We are a group that shares our problems and our good times with pps. We also have many people who are supports. They have friends, co-workers or family members that have polio or pps. Drop by and say hello.
    Laura

  • Fiona

    The estimate for PPS is probably low, since, as the article pointed out, not many doctors know about polio or PPS. Add to that the two types of polio – paralytic and non-paralytic – and you have a fairly large number of older people who actually had non-paralytic polio and but were not diagnosed with polio. No diagnosis of polio means PPS isn’t even considered when patients present with wide ranging symptoms.

  • Missy Oakley

    I didn’t realize that there were many survivors. I wish you well in finding the support and care you all need

  • Deedra

    I have been wondering if there is a link between people who have had polio and their children that have autoimmune disease.My father had polio as a youth.He lost then regained use of his right arm.I have had muscle problems since being a teen and am diagnosed w/Fibromyalgia,Lupus and MCTD.