Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, April 14, 1991 TAG: 9104140292
SECTION: VIRGINIA PAGE: D8 EDITION: NEW RIVER VALLY
SOURCE: Associated Press
DATELINE: RICHMOND LENGTH: Long
She found the work exciting, fulfilling, and one that demanded much concentration. Then she started falling.
"It started with leg pain," said Wilkinson, 52, of St. Stephens Church in King and Queen County. "I couldn't understand why my legs hurt so bad. I stopped wearing high heels. I started sitting at my desk. I had a nasty bathtub fall."
The problem dated back to 1944. That was the year Wilkinson turned 5 and contracted polio, a disease that attacks the central nervous system. She followed a routine of painful exercises to regain the use of her legs.
Nearly 50 years later, Wilkinson is forced to use crutches again. She spends more and more time in a wheelchair. She said she lost her job because she was so overcome by fatigue, she just couldn't concentrate.
Wilkinson isn't alone.
About 650,000 polio survivors are haunted by a disease they thought they had exercised into oblivion nearly a half-century ago.
Most of those who contracted the virus in the 1940s and 1950s, before a vaccine was discovered, followed medical advice and exercised vigorously to resume active lives.
Now, physical therapists say the strain they put on their muscles may be to blame for post-polio syndrome, the recurrence of polio symptoms years later.
Those symptoms include sudden fatigue, muscle weakness and pain. Sometimes, the patients have difficulty sleeping, breathing and swallowing, according to the International Polio Network in St. Louis, Mo.
About 50 percent or 60 percent of all polio survivors can expect to show 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, battled polio as a college student in 1954. Back then, exercise was the best road to recovery.
"The advice was generally appropriate," Halstead said. "People needed to rebuild their bodies and that was the way to do it. You needed to do exercises at a reasonable pace.
"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 survivors are discouraged at losing the gains they made the first time they battled the disease.
"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, of Richmond. "There's a lot of emotional pain along with that."
Gathright-Dietrich was 2 years old when she contracted poliomyelitis. It put her in an iron lung, but she jogged and danced and exercised her way back to health.
She largely forgot about the disease until her condition began to deteriorate a few years ago. She changed jobs from medical-surgical nursing to psychiatric nursing, which caused less wear and tear on her muscles. Within a year, she went from crutches to a wheelchair. Lately, she's had to wear braces on her wrists.
"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 said she resigned from the hospital.
Afraid of what was happening to their bodies, not knowing how useless their muscles would become, the victims have turned to support networks for answers.
Halstead said more than 300 of these local support groups have sprung up across the nation in the past decade.
In Richmond, Gathright-Dietrich founded the Central Virginia Post-Polio Support Group. There were five members at the first meeting in July 1986. Now, the group has 114 members in central Virginia.
Wilkinson serves as president of that group.
"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, professor emeritus at the Medical College of Virginia, where she served as director of the School of Physical Therapy for 39 years.
"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. Young doctors aren't familiar with the disease.
"There's no definitive test," Gathright-Dietrich said. "It's diagnosed by history and process of elimination of central nervous system diseases." She said at one point she was told she had multiple sclerosis.
As a result, many victims of post-polio syndrome are directing their own treatment.
"The theme is don't push," said Dr. Jacquelin Perry of Ranchos Los Amigos Medical Center in California. She recently wrote about her work with 178 post-polio patients. "Listen to your body and pamper it. Pain is a sign of injury, don't accept it. Fatigue is physical, not mental. Avoid further damage by not overdoing."
by CNB