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Survivor Helps Others Cope With Post-Polio Syndrome : Health: Downey therapist counsels victims who recovered from childhood disease, only to be hit by problems later. She encourages them to take it easy.

January 13, 1994|DICK WAGNER | TIMES STAFF WRITER

SOUTHEAST AREA — Work hard. Get normal. That was the rehabilitation philosophy in the 1940s and '50s for polio victims, and Grace Young took it to heart.

"We were imbued with that philosophy," said the Downey woman, whose left leg was paralyzed by the disease when she was 9 and living in St. Louis.

After two years of intensive therapy, Young regained the use of her leg, then embarked on an active life--she danced, played tennis, worked full time, raised two children and helped her husband with his sales business.

She worked hard, got normal . . . and now:

"I can't dance anymore," said the occupational therapist at Kaiser Permanente Medical Center in Bellflower. "Both legs are weak. I can't even lift a five-pound weight."

What she should have done during all those years, as it turned out, was to have taken it a lot easier.

Young, 60, has post-polio syndrome. It came upon her in the early 1970s when her legs weakened. She responded by riding an adult tricycle every night. "All it did was make me weaker," she said. "I had no idea how stupid it was."

The change in her condition had taken her by surprise, as it does most polio survivors. They have always assumed that, after having been stable for so long, there would be no further problems.

"Now we know that survivors

who have overworked their weakened neuromuscular system are at risk," Young said. "After 30 years, the nervous system can't stand the demands on it. Muscle fibers start to deteriorate. The more active (a person) has been, the more likely (he or she) will get it."

According to government health statistics, about 600,000 of

the 1.6 million polio survivors in the United States are experiencing late effects of the disease, which usually begin about three decades after the disease first invaded their spinal cords. Many of these people, like Young, have been forced to return to wheelchairs and wear braces.

Young conducts classes at the hospital for polio survivors who are having new problems. She tells them to modify their lifestyles. "You can slow down the process," she told a recent group. "You can arrest the symptoms by conserving (energy)."

The therapist has gained a national reputation in post-polio syndrome. In 1992, she addressed a Canadian polio conference in Vancouver, B.C., and she has written a book titled "Conserve to Preserve--A Polio Survivor's Guide to Energy Conservation," which will be published soon by the International Polio Network in St. Louis.

"She's very knowledgeable," said Dr. Jacquelin Perry, who has been seeing polio patients at Rancho Los Amigos Medical Center in Downey for 38 years. She diagnosed Young's condition in the mid-1970s, but it was so new it had yet to acquire a name.

"Not everyone is going to get it," said Perry, who conducts post-polio clinics. "Just those who overdo, and sometimes (living a) normal lifestyle is overdoing."

A pleasant woman with an expressive face highlighted by eyebrows that peek above fancy-framed spectacles, Young became interested in post-polio syndrome in 1986 when she entered USC to earn a master's degree. The syndrome, which had been infrequently discussed in medical literature, was the topic of her thesis.

"At first I went back (to school) to stretch my mind, then I realized this was an area I knew nothing about and should learn," she said. "It was pretty much unexplored. All I knew was that I had it. So it became like a crusade."

She learned from Perry and by attending medical conferences that conserving energy is the preferred treatment for the syndrome.

In Young's classes, which she has been conducting for four years, polio survivors are often shocked and dismayed when they learn why they are becoming weaker. "One woman cried through the whole thing and didn't come back for 3 1/2 years," Young said.

Such reactions don't surprise Young because of the nature of polio patients. "A very high percentage are hard-driving, goal-oriented perfectionistic and ambitious people," she said. "Everybody has pushed them to work very hard, do what everybody else did."

As James Ingham, 46, of Buena Park, left a recent class, he said, "It's a little bit scary when you first find out about this. You get to the point where you think this is behind you and you have a normal life, and then you find you might be facing this in the future."

(Young estimates that 60% to 70% of polio survivors will get post-polio syndrome.)

Ingham got polio at age 2 and was in braces and an iron lung. But since elementary school, his life has been active and normal. He has always exercised and, recently, joined a fitness club.

He said he is not sure if he has experienced post-polio syndrome symptoms. "I'm wondering," he said. "At my age there's a certain amount of slowing down anyway."

His speculation is typical. "They think they're just getting older," Young said. "As polio survivors, we were all taught to ignore pain and fatigue, so a lot of us don't notice when things are getting bad."

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