What is post-polio syndrome?

DEAR DOCTOR K:

My grandfather had polio decades ago. He recently went to the doctor and was diagnosed with post-polio syndrome. What is this? And what can he do to regain his strength?

DEAR READER:

Post-polio syndrome is the term for a collection of symptoms that occur decades after infection with the polio virus. The main symptom of the condition is new muscle weakness.

Polio is caused by infection with the polio virus. The initial symptoms often include muscle weakness, and sometimes complete paralysis, that develops over a few days. (That’s why polio, which often hit young children, once was called “infantile paralysis.”) Most people retain some permanent weakness. Perhaps the best-known example is President Franklin D. Roosevelt, who developed polio as a young man and whose legs remained paralyzed for the rest of his life.

Some people with polio regain full strength. Whether fully or partially recovered, a person’s condition one year after getting polio is generally the way he or she will remain for many decades thereafter.

Then, for some people, something happens. Even if they had regained full strength, they start to get weaker. Muscles in their arms, legs or trunk start to lose bulk. They may begin having difficulty with swallowing, talking or breathing, since all those activities require certain muscles. Other symptoms include muscle pain, fatigue and cold intolerance. Often, the new weakness appears in muscles that were thought to be unaffected by polio.

All polio survivors, regardless of how mild or severe their symptoms were when they initially had polio, can develop post-polio syndrome. It’s not clear why some develop it while others do not, nor what causes it. There is some evidence that immune system cells are, for unclear reasons, attacking the spinal cord.

Treatment includes rehabilitation of several types. Physical therapy can increase muscle strength and endurance, and can help improve balance and prevent falls. If the arms and hands are involved, occupational therapists can help improve functions such as writing or cooking. Therapists may recommend special adaptive equipment for the home or office. Speech and language pathologists can evaluate and treat swallowing and speech problems.

Orthotists can provide braces for the legs. President Roosevelt could not stand up, but he gave hundreds of speeches while standing — because his leg braces held him up. Many people did not even know he was paralyzed.

Some complications require specific treatments. For example, if your grandfather has difficulty swallowing, he may be helped by using different positions during meals. Or if your grandfather’s breathing is being affected, his doctor may prescribe an air-pressure mask and machine to support breathing during sleep.

Post-polio syndrome usually worsens slowly. But with a good rehab program and lifestyle changes, your grandfather should be able to return to or approach his previous level of functioning.