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Many Polio Survivors Forced to Return to Crutches : Medicine: About half of those who beat the disease in childhood are losing mobility. Doctors blame rigorous physical therapy for wearing out muscles and nerves.

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ASSOCIATED PRESS

Mary Wilkinson spent 25 years working her way up to manager of a $250-million stock portfolio for Reynolds Metals Co.

Then she started falling.

“It started with leg pain,” said Wilkinson, 52. “I couldn’t understand why my legs hurt so bad. I stopped wearing high heels. . . . I had a nasty bathtub fall.”

The problem dated to 1944, when, at age 5, she contracted polio, a disease that attacks the central nervous system. Through painful exercise, she regained the use of her legs.

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Nearly 50 years later, Wilkinson is using crutches again. She spends more time in a wheelchair. She lost her job because she was so overcome by fatigue she just couldn’t concentrate.

Wilkinson is one of about 650,000 adults haunted by a disease they thought they had conquered. An estimated 125,000 polio survivors are suffering from post-polio syndrome.

Most who contracted the polio virus in the 1940s and 1950s, before a vaccine was developed, followed medical advice and exercised vigorously. Now, physical therapists say, the strain they put on their muscles back then may be the cause of post-polio syndrome.

The symptoms include sudden fatigue, weakness and pain. Sometimes, patients have difficulty sleeping, breathing and swallowing, according to the International Polio Network in St. Louis.

Perhaps 60% of polio survivors can expect to get symptoms of post-polio syndrome, said Dr. Lauro S. Halstead, director of the Post-Polio Program at National Rehabilitation Hospital in Washington, D.C.

Halstead, 55, had polio as a college student in 1954. He followed the advice to exercise vigorously.

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“Personally, I would not have pushed myself as much,” he said. “I might have taken escalators or elevators instead of climbing stairs. But, who knows? You can flagellate yourself endlessly. There may be more to it than an overuse phenomenon.”

Post-polio patients say it is discouraging to lose the gains they made.

“You worked so hard as a kid to not show a limp or any weakness, and here it was again,” said Margo Gathright-Dietrich, 43. “There’s a lot of emotional pain along with that.”

Gathright-Dietrich was 2 when she contracted poliomyelitis. It put her in an iron lung, but she jogged and danced and exercised her way back to health.

She had all but forgotten about the disease until her condition began to deteriorate a few years ago. She changed jobs, from medical-surgical nursing to psychiatric nursing, which was less physically demanding. Within a year, she went from crutches to a wheelchair.

“I convinced myself as long as I could draw up emergency medications or use the phone or unlock the doors to get the other patients to safety, I was OK,” she said. “But when I couldn’t count on my hands to do those things, I didn’t feel I had any business being there.”

She resigned.

Afraid of what was happening to their bodies, these patients have turned to support networks. Halstead said that more than 300 such groups have sprung up in 10 years.

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In Richmond, Gathright-Dietrich founded the Central Virginia Post Polio Support Group. Five people attended its first meeting in July, 1986. Now, there are 114 members.

“There are so many, many post-polio patients who are still hiding from themselves and hiding from the world and still pretending ‘I’m just getting older,’ ” said Sue Hirt, a professor emeritus at the Medical College of Virginia.

“Or, they’re misdiagnosed by physicians who don’t understand or who have not yet learned,” Gathright-Dietrich added. “There are still medical professionals who doubt that post-polio syndrome exists.”

Many of the doctors who treated polio patients in the 1940s and ‘50s have died or retired, and younger doctors aren’t familiar with the disease.

“There’s no definitive test” for post-polio syndrome, Gathright-Dietrich said. “It’s diagnosed by history and process of elimination of central nervous system diseases.”

As a result, many post-polio patients are directing their own treatment.

“The theme is don’t push,” said Dr. Jacqueline Perry of Rancho Los Amigos Medical Center in Downey, Calif., who recently wrote about her work with 178 post-polio patients.

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“Listen to your body and pamper it,” she advises. “Pain is a sign of injury. Don’t accept it. Fatigue is physical, not mental. Avoid further damage by not overdoing.”

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