Locals with post-polio syndrome find solace

Published April 12, 2005

It was a dream that awakened Baytonian Gary Burroughs to the realization that he had post-polio syndrome. In the dream, Burroughs’s father was rubbing his legs until he drifted off to sleep, the same tender gesture his father had repeated every night when Burroughs contracted the poliovirus as a child.

“I woke up from the dream and realized I was experiencing the same type of pain I had when I was 4 years old,” Burroughs said.

The dream quickly spiraled into a nightmare as the syndrome took over Burroughs’s body and the pain intensified. He described it as waking up every morning and feeling from mid-thigh down like his legs have been in a microwave, deeply aching and burning from the inside out.

His initial reaction, like many others who have experienced the late effects of polio, was anger.

“Here’s this thing that got defeated 30, 40, 50 years ago, and it’s come back on you,” Burroughs said.

But he found solace in a local support group for polio survivors and is now treasurer of the Texas Polio Survivors’ Association. The group aims to spread awareness of post-polio syndrome, and to that end Gov. Rick Perry declared today Polio Survivors’ Day in Texas.

The date coincides with the 50th anniversary of the introduction of the Salk vaccine and the 60th anniversary of the death of President Franklin Delano Roosevelt, who battled polio and went on to become the nation’s 32nd president.

Not again

The biggest challenge in educating the public about post-polio syndrome, Burroughs said, is explaining that it is not a reoccurrence of polio but delayed effects. Marked by symptoms like muscle weakness, pain, fatigue and sleeplessness, the syndrome rears its ugly head decades after its victims overcame polio.

Not everyone who survived polio suffers from the syndrome. The National Institute of Neurological Disorders and Stroke estimates that more than 300,000 of the nation’s roughly 6.3 million polio survivors may be at risk.

Scores of people are not aware that the syndrome even exists, Burroughs said, and some of them are people who suffer from it. The Texas Polio Survivors’ Association has roughly 600 members and a mailing list of 1,000, but those numbers should probably be bigger, he said.

“The younger generation has no idea what polio is, and the older generation that was around when polio was around in the first place know that polio was virtually wiped out in the United States,” Burroughs said.

Doctors, who are no longer thoroughly educated about polio and its symptoms, often diagnose post-polio syndrome patients with chronic fatigue syndrome. The symptoms also correspond with victims of multiple sclerosis, West Nile virus and fibromyalgia.

Research is needed for treatment of post-polio syndrome, but “it’s pretty much a dead issue,” Burroughs said. The emergence of the Salk vaccine 50 years ago today eventually eradicated polio in America, and the people who contracted it before the vaccine destroyed it are aging.

Doris Scarborough, another Baytown victim of post-polio syndrome, knows that research is needed for plenty of other diseases but believes hers should be included on the list.

“People see poor, pitiful little child in braces and say, ‘They need our help,’ and then they look at us older people in wheelchairs and braces and they say, “Well, they’re going to die before too long anyway,” said Scarborough, 67. “We’ve fought and survived polio, and now we’re having to fight again. We’re fighting for post-polio syndrome, and we’re fighting for the rights we need.”

Support groups

Because they can’t rely on research for a promise of recovery, post-polio victims depend on each other for strength and encouragement. Support groups are scattered throughout the state, and the closest meets on the first Saturday of each month at the La Porte Public Library.

“It helps you to know that you are not alone in the way you feel, and you are not crazy because these thing are happening to you,” said Scarborough, who co-chairs the Bay Area group. “They are happening to you, and a polio survivor can understand that.”

Burroughs said some group members still joke about the anger he expressed when he first discovered he had post-polio syndrome. He has worked through much of the anger and deals with it now by visiting shut-ins as a chaplain.

Helping others is one of the best things the group members can do to cope with their own pain and frustration, Burroughs said.

“We’re there for each other, and whenever someone needs to vent some of that anger, we understand it as best as anyone else can,” he said.

The psychological problems that accompany post-polio syndrome are severe and often make the physical pain worse, Scarborough said. Men who supported their families are devastated when they can no longer work long enough or hard enough, she said. Single women who provided for themselves feel lost.

“You may have a high profile job, and one day you might not be able to handle that job,” she said.

Scarborough, who had polio at age 5, discovered she had post-polio syndrome after her house flooded. The emotional distress made her realize that something was terribly wrong with her.

Victims turn to the support group to get through most of the anger and pain then stick around to be there for someone else, said Virginia Chase, a Shoreacres resident and former president of the Texas Polio Survivors’ Association. The group members’ ages range from late-30s to mid-80s, with younger victims having contracted polio in other countries.

“Many of our stories are very, very different, but the underlying part is usually the same — the suffering, the trying to hide it,” Chase said. “The big thing is you wanted to look normal.”

Taking off the masks

Chase has worn a brace on her right leg her entire life and to this day favors her left side when she examines herself in a mirror. People who contracted polio before it was eradicated were ashamed because the widespread belief was that “you got it from being dirty,” Scarborough said.

“You want so desperately to be normal. That was something that was pounded into polio survivors,” Chase said. “You wanted to be like everybody else. You didn’t want that stigma. People were quarantined. My husband remembered hearing people cry at night because their spouses had left them. Children were abandoned at polio hospitals.”

Many polio survivors have “Type A” personalities, Burroughs said, because they were taught to religiously work through the pain. Chase remembers her father exercising her right leg and ankle every night when she was a teenager.

This mentality helped them develop a high tolerance to pain, so much so that people often do not recognize post-polio syndrome victims when they see them. Scarborough gets around without a cane or braces but parks in handicapped spaces and uses a motorized cart at grocery stores. People often give her funny looks, she said.

Post-polio syndrome victims’ desire to be normal and their tendency to mask pain leads to behavior that fools the outside world into thinking that they’re OK, Scarborough said.

“But when we’re in our meetings, we don’t mask that,” she said. “The mask goes away.”

Support group members also turn to each other for helping finding medical resources and equipment to help them cope with the syndrome. Two years ago the federal government declared post-polio syndrome a disease for which someone could draw Social Security disability income.

Medicare covers the cost of new lighter-weight plastic braces but does not cover the shoes that go with them, said Scarborough, who also co-chairs the Texas Polio Survivors’ Association assistance fund. The non-profit association collects donations to help people pay for shoes, wheelchairs with breathing machines and other such equipment, she said.

The equipment helps them cope with the pain but cannot end it. Members rely on each other and support from their families to face the bleak future.

“You are a dying breed,” Burroughs said. “Pneumonia is the No. 1 killer of people with post-polio syndrome; suicide is No. 2.”

The lucky ones

Pneumonia complicated by polio led to the death of Chase’s husband, Paul, who died less than two months ago at the age of 77. He led the Bay Area support group for years.

Chase met him at the Bay Area Rehabilitation Center pool after receiving numerous calls from him to join the group. She finally relented, and her participation led to wedding bells for the pair. This summer would have been their 10-year anniversary.

Some days are hard, Chase said, but more often than not she chooses to look on the bright side.

“You have a choice — OK, I’m going to learn to live with this, or you can decide to be miserable,” she said. “My choice is to get as much out of my life as I can.”

Burroughs considers himself one of the lucky ones who completely recovered from polio. He ran track in high school, served as a police officer and a teacher, and worked as an operator in a chemical plant for nearly 20 years before the syndrome attacked him.

Now 57, Burroughs can walk, but he mostly uses a cane or electric mobility to save his strength. He has to rely on others to perform simple tasks around the house, like mowing the lawn, painting the house and changing light bulbs.

Post-polio syndrome victims have to walk a fine line between too much activity, which tears their muscles down, and a lack of activity, which causes them to lose muscle strength.

“It used to be ‘use it or you’ll lose it,’” Chase said. “Now it’s ‘conserve it to preserve it.’”

This maxim doesn’t keep Chase from climbing on her scooter and racing her 6-year-old granddaughter in her Barbie jeep. Nothing makes the syndrome go away, she said, so she grins and bears it.

Chase’s attitude is not a far cry from the instructions she followed as a child wearing a brace: ‘Smile and don’t look crippled.’ Growing up in Louisiana, her father made sure that she could do everything other children could do.

She recalled specifically that their backyard was full of pecan trees, and her family built a tree house in one of them — the only one that Chase could not climb. To remedy the situation, her father constructed a ladder so that she could play with everyone else.

“My Daddy built me ladders, so I continue to build them now,” Chase said.