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After Polio : A support group offers help to those stricken decades ago and frustrated by lack of treatment for long-term effects.

March 18, 1993|ROBYN LOEWENTHAL | SPECIAL TO THE TIMES

Since the widespread availability of the Salk polio vaccine beginning in the early 1960s, the dread childhood affliction--like TB--has become relatively unknown in the United States. And to the generation of schoolchildren who escaped its crippling effects, polio holds no threat.

But to almost anyone over age 50, polio conjures up images of iron lungs. And the word will evoke an irrational fear of public swimming pools, where it was believed the disease was spread.

The effects of polio have been with 68-year-old Val Nemson and her husband, Ed, every day since 1952. That's when the illness put the 28-year-old wife and mother in a wheelchair.

Nevertheless, during 46 years of marriage, Val Nemson has been able to raise her two sons, run a household, drive a car and develop a mean game of bridge, thanks to specially designed devices and an accessible house built by her husband in Ventura.

"It was called infantile paralysis," Nemson said. "But a lot of teens and adults like me got it."

Val Nemson belongs to a generation, now mostly in their 60s, who survived polio and have outlived most of the medical experts trained to treat it. So she joins 12 to 20 people at a monthly Post-Polio Support Group established eight years ago by Tom Hashbarger, 60, executive director of the Easter Seal Society of Ventura County.

"A couple of members of the group are in their late 30s or early 40s," said Hashbarger. "But most are people who were stricken in the 1930s and '40s. So over half are 55 or older."

Although the group often invites speakers, it mainly exists to give members the chance to help each other deal with their common problems.

"We get encouragement from each other and compare notes about assistive devices and medical treatment," said Nemson.

"One of the things that is crucial is rest. And a lot of people talk about the discipline needed to take a nap," said Hashbarger.

But for about 20% of polio survivors, fatigue is also a symptom of a phenomenon called post-polio syndrome. These people, usually in their 60s, are experiencing muscle weakness, pain, fatigue and loss of function that often diminish their independence, said Hashbarger.

Most people who were initially affected by the disease made what they thought was a complete recovery, said Hashbarger. Unfortunately, the course of polio is never constant.

"The delayed effects started becoming evident about 30 years later," Hashbarger said.

"It's been probably less than 10 years that post-polio syndrome has been recognized as a condition. It's a condition that is not clear-cut or easily diagnosed. The common factor is all the people at one time had polio."

And medical treatment is no small problem.

"There are not a lot of medical people trained to treat polio nowadays," he said. "Not many medical specialists now have experience treating acute polio because most have retired. And some of the senior physicians practicing may have only seen one or two cases."

Understandably, he and others are frustrated that more is not known about the condition.

Like Nemson, 68-year-old Gardie Lee of Santa Paula has been a regular participant in the support group from its inception. But Lee developed polio as an infant and again at age 6. And unlike Nemson, Lee is suffering the effects of post-polio syndrome.

"At first they thought it was a reactivation of the virus," said Lee, who has been using a wheelchair since he was 12. "But then about 10 years ago they began to realize it was a separate syndrome. I was able to pretty much take care of myself until a combination of approaching age and post-polio syndrome. I've gotten very weak."

Lee and Nemson emphasized the value of the support group for polio survivors who are single. And both were quick to credit their spouses and long, happy marriages for the quality of their own lives.

"It's a terrible adjustment," said Val Nemson. "The spouse is just as much a part of it. They're really in the chair with you."

FYI

The Easter Seal Post-Polio Support Group meets on the second Monday of each month at 7:15 p.m. at Easter Seal Center, 10730 Henderson Road, Saticoy. There is no charge. For details, call (805) 647-1141.

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