Doc: Find support group for pain of post-polio syndrome

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’ve watched the pain he has endured. He 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’s been in a wheelchair for about seven years. He can’t 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 and his whole body jumps like he’s being electrocuted. It can last from two minutes to, lately,eight hours. He takes a muscle relaxer, but it works only sometimes, not during 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.

Dear D.K.: Polio is a viral illness. Although the vast majority of cases are asymptomatic, about one person in a thousand infected 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.

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 info to help you find someone with expertise.

Email questions to ToYourGoodHealth@med.cornell.edu.