Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, April 8, 1991 TAG: 9104080347
SECTION: VIRGINIA PAGE: A-5 EDITION: EVENING
SOURCE: Associated Press
DATELINE: RICHMOND LENGTH: Medium
She found the work exciting, fulfilling and one that demanded much concentration. Then she started falling.
"It started with leg pain," Wilkinson, 52, said. 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, at age 5, 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 these people put on their muscles may be to blame for post-polio syndrome, the recurrence of polio symptoms years later.
These 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.
About 50 percent or 60 percent of all polio survivors can expect to show symptoms of post-polio syndrome, said Dr. Lauro Halstead, director of the Post-Polio Program at National Rehabilitation Hospital in Washington
Halstead, 55, battled polio as a college student in 1954.
"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 polio. It put her in an iron lung, but she jogged, 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 was 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 and 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.
"There are still medical professionals who doubt that post-polio syndrome exists," Gathright-Dietrich added. Many of the doctors who treated polio patients in the 1940s and 1950s 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."
by CNB