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Find support group for lingering pain of post-polio syndrome

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POSTED August 14, 2016 8:14 p.m.

DEAR DR. ROACH: My dad is 89 and had polio when he was 6. He had to learn to walk again. Over the years, I have watched the pain he has endured. His legs hurt so much that my mom and I would take turns punching the back of his legs, as they would cramp up like a rock. Losing muscle is a side effect of polio, and he has lost almost all of his. He has been in a wheelchair for about seven years. He cannot lie in bed because of a rotator cuff tear that hurts when he lies down; he gets a steroid shot every three months, which may give him a few days or weeks to lie down without pain.

He gets spasms at random. His whole body jumps like he is being electrocuted. It can last from two minutes to, lately, as long as eight hours. He takes a muscle relaxer, but it works only sometimes, not when he has bad spasms.

He also takes two kinds of pain pills a day, Percocet and OxyContin. Can you think of any way to stop the spasms? No doctors have been helpful. -- D.K.

ANSWER: Polio is a viral illness. Although the vast majority of cases are asymptomatic, about one person in a thousand infected with polio virus will develop poliomyelitis, caused by damage to nerve cells in the spinal cord and brain. Even though a small proportion of people with polio developed this dreaded complication, the disease was so widespread prior to vaccination that there are still many people living with the long-term effects of poliomyelitis. In the 1980s, when I was in my training, it was estimated that there were 640,000 Americans living with this. I have seen many in my practice, but future doctors hopefully will not; wild polio exists now only in two countries and may be eradicated as soon as next year, thanks to Herculean efforts by governmental and nongovernmental agencies.

Some people develop worsening of symptoms years or decades after the initial polio infection, such as your father’s progressive muscle weakness and muscle spasms. This is called post-polio syndrome. It can happen in 25 to 40 percent of polio survivors, and is not caused by the virus (which is long gone) but is thought to be due to progressive damage to the nerve cells. There are many reasons for pain and spasm, and the treatment will depend on the underlying cause. For some people, it’s overusing the weakened muscle, so the treatment is an exercise program that avoids exhausting the muscle.

For others, it’s contraction of the atrophied muscle, and stretching or an appliance may help.

  My best advice is to find a support group for people with history of poliomyelitis. Polioplace.org, post-polio.org and ppsr.com all have information to help you find someone with expertise. Opiates like Percocet and OxyContin are a last resort. I hope he finds something more effective.

  DEAR DR. ROACH: What’s the difference between Alzheimer’s disease, dementia and Parkinson’s disease? -- A.L.B.

  ANSWER: Dementia is a condition of progressive loss of brain function, especially memory. Alzheimer’s disease is the leading cause of dementia. 

  Many people with longstanding Parkinson’s disease (primarily a disease affecting motor function) develop dementia as well. There is less memory loss in the dementia associated with Parkinson’s disease, but more loss of decision-making ability, and visual and spatial abilities, such as ability to recognize faces.

  The Alzheimer’s Association has much more information about all kinds of dementia at www.alz.org.

  The booklet on Alzheimer’s disease gives a detailed presentation of this common illness. Readers can obtain a copy by writing: Dr. Roach Book No. 903, 628 Virginia Dr., Orlando, FL 32803. Enclose a check or money order (no cash) for $4.75 U.S./$6 Can. with the recipient’s printed name and address. Please allow four weeks for delivery.

 

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