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ONLINE DOCUMENT: DECADES LATER, POLIO SURVIVORS FACE CHALLENGE OF POST-POLIO SYNDROME

SHARE ONLINE DOCUMENT: DECADES LATER, POLIO SURVIVORS FACE CHALLENGE OF POST-POLIO SYNDROME

Mary Ann Hamilton prayed that if polio struck her family, it would spare her four children and target her instead. In 1954, it did.

Hamilton fell ill one evening while the children were helping her set the dinner table in their Thornton, Colo., home. By the time her husband, Ed, got home from work, she couldn't get off the couch and the doctor had called an ambulance.The children, ages 5, 4, 3 and 14 months, didn't see their mother again for eight months. She was one of the lucky ones who survived the ordeal at Colorado General Hospital and re-created a life in spite of breathing problems and a paralyzed torso and arms.

Now, like 400,000 others who survived the disease, she is fighting post-polio syndrome, which leaves its victims with fatigue, joint pain, muscle weakness and swallowing and breathing problems. An estimated 1.3 million polio survivors will eventually show some symptoms.

"We always had a housekeeper," says daughter Pat Jenni, now 46, "but we tried to keep (life) as normal as we could." Hamilton devised ways to direct a household without using her arms and thought the worst was behind her.

Forty years ago doctors couldn't have predicted that polio damage would accelerate as patients aged. Those who survived the disease tended to be Type A personalities who worked hard to overcome their handicaps.

Now they know that polio kills the motor neurons that make muscles work. As we age, we all lose motor neurons, but because polio survivors don't have as many to begin with, they see declines faster.

"When we push ourselves to the limits, we accelerate the decline," says Hamilton. "We're now being taught to maintain what strength we have to extend the quality of our lives. Our motto is `Conserve it to preserve it,' which is a lot different from the original message to use it or lose it."

Hamilton began to notice changes in the early '80s. She felt tired all the time but didn't know why. She read a magazine article about post-polio syndrome, heard about a local support group and, in 1985, went to a meeting.

"Most of us didn't want to go and be around lots of sickies," she says, and most had never known other polio survivors. They found comfort in sharing stories, even though no two were alike.

"Polio is a designer disease that hits everyone differently," says Hamilton. Some people were left with only one finger that works, while others can use everything but the muscles that help them breathe. And their respiratory problems are different than those caused by any other disease.

No one knows what to expect, since research stopped the year the Salk vaccine was introduced, and little new research has been funded.

"We're not cute little poster kids anymore," Hamilton says stoically. "It's harder to raise money."