Symptoms recur in some cases after years of health

POLIO SURVIVORS WAGE A NEW BATTLE

March 07, 1993|By Jonathan Bor | Jonathan Bor,Staff Writer

Picture a handsome scholar-athlete, 6-foot-2 and strong, s ,, quick in the classroom and dashing on the football field that girls like him before they meet him.

Imagine the same 17-year-old lying scared and limp in a hospital bed. Polio has immobilized him from shoulder to toe.

Envision the adult Howard Nickelson, civil rights leader, amateur furniture builder and high-ranking federal employee, running his life from a wheelchair. With rejuvenated arms, he vaults into his car, then drives off to a schedule that could leave anyone breathless.

Now, think about the same man, facing his 60s with arms once again weakening. He still drives, teaches, leads. But sometimes at day's end, he feels too weary to wrestle his body into bed. He can almost see "the edge," the point when he may lose his hard-won independence.

This may sound like the return of polio, but it isn't.

It is post-polio syndrome, an erosion of strength that occurs 20, 30 or 40 years after nerves rebounded from paralysis. In a cruel twist, evidence suggests patients may have hastened the onset of the disease by doing what they were told years ago. They pushed their muscles to the limits of endurance.

Of the 640,000 polio survivors living in the United States today, 30 percent to 60 percent suffer degrees of post-polio syndrome, studies suggest. For the largest group -- the people originally stricken in the post-war years -- the condition has arrived like a second curse.

"This was totally against the common knowledge," says Mr. Nickelson, 60, a proud man from Pasadena with a gray goatee, a resonant voice and a professorial air. "We'd sort of been given a guarantee that once we overcame whatever impairment we had, that would be it. Somehow, someone didn't know the contract."

The first major polio epidemic occurred in the summer of 1916, so it is likely that post-polio syndrome has afflicted patients since mid- century. But for many years, the symptoms weren't associated with polio. They were diagnosed as normal consequences of aging, or simply dismissed.

That changed in the 1980s, when survivors of the 1940s and 1950s began to discuss the disturbing things that were happening to them. They were limping, falling, or dragging against overwhelming fatigue. Patients who had walked unassisted for years were returning to crutches, canes and braces. Some, to conserve tired muscles, began using wheelchairs and motorized scooters.

"I have seen a number of people who have had to go back to iron lungs," says Dr. Lauro Halstead, 56, a polio survivor who runs the post-polio clinic at the National Rehabilitation Hospital in Washington.

'Never been sick before'

Polio descended on Howard Nickelson in the cruel, random fashion in which it chose most of its victims.

The year was 1948. All around him polio was whipping up fears. Frightened parents kept their children home from swimming pools and amusement parks where, they believed, the contagion might lurk. Kids who slipped off to forbidden theaters or sipped from banned fountains came home and fretted.

But the boy from Brooklyn, N.Y., wasn't worried. Life was sports and selling ice cream on the Atlantic. With all his strengths, it was his athletic prowess that defined who he was.

Then one autumn day, while running through football drills, he seemed to lack his usual edge. That night, he felt feverish and weak. The next morning, he sat up in bed, planted his feet on the floor and collapsed. His legs were useless. Hours later, he was lying in a hospital bed, so completely paralyzed he couldn't even squirm to get comfortable.

Down the hall, people worse off than him lay in iron lungs, hulking contraptions that brought tremendous relief to the suffering but became the most frightening image of polio next to death itself. From his bed, he could hear the relentless sound of bellows moving air out of the machines, and smell the hot, dank blankets that kept patients' muscles from tightening into permanent contractures.

"I'd never been sick before," he recalls. "To suddenly hear the iron lungs bellowing in the night was frightening. I didn't have anyone to talk to, just a couple of harried, very frightened parents."

At a rehabilitation hospital where he spent the next two years, he realized that his legs would never move.

But time, hot blankets and a powerful will brought him back. He regained partial use of his arms, and, through them, his independence. He adjusted.

He earned a college degree, married and raised a child. He learned to cook, drive a hand-controlled car and build furniture with power tools. He runs a division that issues rules for Medicare and Medicaid, and teaches current affairs to senior citizens at a community center.

In the 1970s, he started an organization called the Chesapeake Area Society for the Physically Handicapped, which won the passage of laws requiring accessible office buildings, restaurants and shopping centers in Anne Arundel County.

In 1979, he was a delegate to a White House conference on the disabled.

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