Decades Later, Horror Returns to Polio Victims

Susan Maslar figured the pain and agony was over when she left a home for crippled children three decades ago following a successful battle against polio.

But many of her old symptoms gradually began reappearing. She began sleeping through entire weekends and needed a cane or a wheelchair to get around.

It was a nightmare returned, worsened by doctors’ insistence that the horror was all in her head.

“I was tired of them telling me I was crazy,” the 36-year-old transportation analyst said from her home in Fairfax, Va.

Finally, last spring, Maslar learned in a magazine article that she wasn’t crazy, that she wasn’t even alone. Thousands of others who had overcome paralytic polio as children were now experiencing many of the same symptoms that they thought they had left behind for good long ago.

“What we’re finding is a small group of patients, all of them with polio as children, who are developing new muscle weakness,” says Dr. Marinos Dalakas, a neurologist at the National Institutes of Health.

One in Four Affected

The nonfatal syndrome, called post-poliomyelitis muscular atrophy, seems to strike about one of every four polio survivors about 30 years following the disease’s onset, according to Dalakas. There are about 300,000 people in the United States today who are believed to have contracted the disease before the advent of vaccines in the mid-1950s.

“There is no link to the virus,” Dalakas says. “But there is a link to the whole disease in the sense that the nerve cells have been previously affected in acute disease and now cannot meet the increased (body) needs. They’re overworked and may be succumbing to the aging process faster than usual.”

Until the past few years, no one realized there was any connection among former polio patients who complained of weakness, fatigue and muscle pain.

Like Maslar, they were considered “crazy or depressed or going through mid-life crisis,” says Dr. Michael Alexander, medical director of D.T. Watson Rehabilitation Hospital in Sewickley.

Alexander knew better. He had been stricken with polio 34 years ago at age 3 and was among those experiencing the disease’s delayed effects.

Cutting Out Exercise

For Alexander, post-polio meant getting rid of his hand-pedaled bicycle and cutting out exercise.

“A lot of these people have to learn they have a disability and that they have to alter their life-styles,” he says.

Susan Maslar is one.

“The treatment we received as children was that the only way to get past it was to just push forward and ignore the pain, exercise and exercise,” she says. “Now that kind of ‘just keep pushing and it will be better’ is hurting us.”

What is even harder for patients is learning to rely again on crutches, braces and wheelchairs.

“It’s very frustrating and demoralizing,” Maslar says.

To educate post-polio victims and help them cope with their new problems, she founded the Post-Polio League for Information and Outreach. Since August, the group has contacted more than 100 people suffering from the syndrome and begun lobbying for insurance coverage and disability pay.

Research continues, meanwhile, to uncover a cause.

“We just have to wait and see what we find,” Dalakas says. “At least now the patients know what to expect.”