post-polio syndrome

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Brain & Nervous System

Post-polio syndromeAdapted from Mayo Clinic Health Letter

Mimics other diseases

Three indicators

Cause unknown

Treatment

On Nov. 10, 1949, Rosella Ann Salley gave birth to a healthy 8-pound boy. Two days later they both developed polio. She barely survived. Her baby, Duane , didn't.

For years polio was one of the most feared diseases in America, responsible for crippling, paralysis and death. In 1952, according to the Centers for Disease Control and Prevention, it reached its peak in the United States with more than 12,000 paralytic cases. Shortly after, vaccines were developed that greatly reduced its spread. Today, nearly no one in developed countries gets polio.

But for some people, the past problems they had with polio now are reappearing in a condition called post-polio syndrome (PPS). The cause is unknown, but new research is beginning to yield a better understanding of this complex syndrome.

More than 300,000 polio survivors in the United States may be at risk of PPS, according to the National Institute of Neurological Disorders and Stroke (NINDS). The NINDS estimates that the condition affects between 25 percent and 50 percent of these survivors, perhaps more depending on how the disorder is defined.Mimics other diseases

Post-polio syndrome — the late effects of polio in some persons — refers to a cluster of disabling symptoms that appear decades after the initial illness. These symptoms — muscle and joint pain, general fatigue and weakness — are similar to those commonly associated with other disorders, such as arthritis, fibromyalgia, chronic fatigue syndrome and scoliosis.

Rosella was diagnosed with scoliosis in 1967. It's the primary symptom affecting her today due to post-polio syndrome.

"My main problem at the moment is scoliosis due to polio," says Rosella. "The condition makes me tip to the left, and I can't hold myself up. Because of scoliosis I have a pinched nerve that comes and goes. It gets bad and then it goes away."Three indicators

To confirm a diagnosis of PPS, doctors look for three indicators:

Previous diagnosis of polio. This often requires finding old medical records or getting information from older family members, because acute polio primarily occurs during childhood. The late effects of polio usually occur in people who were age 10 or older during the initial attack of polio and whose symptoms were often severe. Long interval following recovery. People who recover from the initial attack of polio often live for many years without further symptoms. The onset of late effects varies widely but typically begins 30 to 35 years after the initial diagnosis. Gradual onset. Weakness tends to be imperceptible until it interferes with daily activities. You may awaken refreshed but feel exhausted by the early afternoon, tiring after activities that were once easy.

Rosella says that she was in good overall health between 1952 and about 1987. She says that she felt fine and thought she was doing well. In addition to a 2-year-old child she had before the death of her baby boy, she had five more children. She says that she even took a trip to the Grand Ole Opry in 1952 and climbed 54 steps while she was there. In 1956, she worked outside of her home cleaning houses, as well as caring for her family and home.

"If I could stay like that, my life wasn't going to be too difficult, but since [19]86-87 I have really gone downhill," she says. Life changed for Rosella when PPS symptoms started troubling her again. "I have lived with having to do things differently. If I have to get up off the floor, I have to crawl to the stairway to get up. I used to get up with a stool, but that doesn't work anymore."Cause unknown

Post-polio syndrome doesn't appear to be a new infection or the reactivation of a long-dormant virus. And because some people have developed PPS in ages as early as their 30s and 40s, the aging process has been ruled out as the primary cause.

A Mayo Clinic study that has tested people for more than 15 years who formerly had polio has found that they don't have new nerve or muscle deterioration, as had been suspected. Two-thirds of the people who had symptoms of post-polio had other conditions such as degenerative joint disease or diabetes that might have accounted for some of their symptoms.

Some doctors attribute post-polio syndrome to chronic overuse of muscles and joints that apparently were undamaged by the initial phase of polio. For example, if your left leg was disabled by polio, it's possible that your right leg may develop complications later in life because its muscles and joints have had to overcompensate.Treatment

Because the symptoms often vary, there is no one specific treatment for post-polio. If you had polio and experience new muscle weakness or pain, see your doctor.

Medication. Medications, including aspirin and other nonsteroidal anti-inflammatory drugs, may help. Therapy. An occupational or physical therapist may be able to analyze the ways you move during work or leisure and suggest techniques and stretching exercises to help reduce muscle fatigue. Exercise. Exercise to maintain fitness is important, but be cautious in your exercise routine and daily activities. Avoid overuse of your muscles and joints. Do exercises that aren't as strenuous, such as swimming or water aerobics, and do them at a more relaxed pace than normal. Surgery. For some people, treatment of a specific source of their pain works well. For instance, you may want to consider hip replacement surgery if your hip pain is due to wear and tear that has worn out the joint.

Rosella says that she takes aspirin to alleviate some of her pain. Her doctors have told her to take it easy — to "rest it, not use it." It's difficult for her not to be as active and to accept her limitations, but she's trying to stay positive. She says, "I'm getting older but I have great determination. I'm going to do it and I'll be OK somehow."

Polio vaccination recommendations

Arthritis Center

Brain and Nervous System Center

March of Dimes

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