Patient Comments: Post-Polio Syndrome - Symptoms

What were your symptoms associated with post-polio syndrome?

Comment from: Stump, 65-74 Male (Patient) Published: April 22

I had polio in 1950 (age 4). When I take off my brace and let my leg hang, the foot turns a dark red color. Sometimes the foot can be cold or hot to the touch. I wonder if this is part of the post-polio syndrome. The doctors I have don't seem to have clue. I have always been very active.

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Comment from: roy, 45-54 Male (Patient) Published: October 18

I had polio at the age of 18 months and I wasn't vaccinated. I was paralyzed, I have a bad left leg and hip and scoliosis. I've had 11 surgeries and looking at more, I just had bone took out of my left hand, now I need my right knee replaced. I have post-polio syndrome and it is greatly affecting my body from lack of sleep, fatigued muscles, lack of energy and throat problems. I'm on 13 medicines. My right leg has given up from carrying the bad left leg. I worked hard for 25 yrs. in a factory, now I can hardly get out of bed. I'm only 54 years old, I contracted polio in 1961.

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Comment from: kj, 65-74 Female (Patient) Published: June 12

I contracted paralytic polio (severe) in 1952 when I was 5 years old. After a great deal of time in the hospital and school for the physically handicapped (and a tremendous amount of physical therapy!), I went on to enjoying a life of academia, which also included skiing, running, dancing, etc. In the mid-1990s, I was diagnosed with post-polio syndrome, and symptoms included fatigue, muscle weakness, sleep disturbances, muscle pain, etc. The symptoms seemed to abate in the late 1990s until 2009, when PPS appeared in my life in a strong and progressive way which, in addition to the above stated symptoms, included balance problems, falls (with injuries), dropping items, tremors, increased sleep disturbances, pain, lack of coordination, and perhaps the most frustrating symptom of all, problems with word identification. The symptoms appear to be exacerbated by stress. At the urging of my physician, I was able to earn a service dog 12 months ago. I can't even begin to share how much having a service dog has changed my life! He counterbalances when I have balance issues, allows me to walk greater distances, braces when I fall so that I can lift myself up holding onto his vest/harness, picks up dropped items for me, and during those times I'm unable to identify words, he responds to hand signals. My physician said that he had worries that should I wear braces, use crutches, etc. My falls could easily end in large bone fractures and that a service dog would best meet my needs. He was right on target, and in addition to all the assistance my service dog provides, he is also incredibly helpful in grounding me and helping me to refocus. I'm the luckiest person in the world to have Nate, my service dog.

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Comment from: Charlie, 75 or over Male (Patient) Published: May 28

I had polio at age 26 in 1952. I had the type that did not lead to paralysis or involvement (abortive polio). For years, I had mild swallowing problems. I played tennis with no affect for many years. Then in 2012, I experienced profound fatigue and an inability to absorb oxygen. Extensive cardiological exams and scans showed no reason for problems. I could sleep on my left side, but not on my right and have sleep apnea. I chaired the March of Dimes in Western New York in the late 1950s. Now what?

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Comment from: Karen, 65-74 Female (Patient) Published: May 13

I contract polio when I was 21 months old in Japan. Except for a slightly deformed foot and leg aches I was OK until about 1980. I joined the military in 1973 – obviously, this was a mistake. I began to feel an overwhelming fatigue. I had a problem with cold or extreme temperatures. (Now that I think about it I used to shake on the way to school in Ohio, I remember my Dad telling me to relax and I wouldn't be so cold). Other symptoms include an inability to concentrate and a poor memory.

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Patient Comments

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Post-Polio Syndrome - Treatment Question: What forms of treatment or therapy have you tried to improve muscle strength lost from post-polio syndrome?
Post-Polio Syndrome - Exercise Question: What types of exercise or physical therapy are helpful in managing symptoms associated with post-polio syndrome?

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