POLIO SURVIVORS WAGE A NEW BATTLE Symptoms recur in some cases after years of health


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.

Then, in the mid-1980s, he started weakening. His arms began to lose some mobility and strength. And the more he worked them, the more exhausted he became.

Getting into his car has become a Herculean ordeal, a 15-minute process of sweat and determination. He wheels to the door, positions a wooden bridge between his chair and the car seat, hoists himself onto the bridge, slides inside, collapses the wheelchair and drags it in.

Frequently, he finds himself shaking from a deep chill, even on warm days. "It's very distracting, and sort of difficult to concentrate on what I'm trying to say while I'm fighting this cold that seems to come from the very core of my being."

He worries about the day when his arms may lose their power, when he may have to rely on others to help him dress and eat.

"I just don't have the strength that I once had, and this requires me to expend much more energy to do the same amount of work I'd done previously," he says. "If I lost any of that [remaining] strength, I would be close to losing everything."

Many doctors say the key to postponing such a fate is to ease up. Their theory is that the nerves that drive muscles, after years of overuse, will last longer if worked less rigorously.

Mr. Nickelson no longer builds furniture, and rarely flies out of town to give speeches related to Medicare. But he refuses to compromise much further. "Some things around the edges I am willing to cut off," he said. "But issues like working, teaching and my community activities: that gets pretty close to the core of who I am.

"And I'm not willing to give up that core."

His wife, Rosalie, says she fears he is driving himself too hard. But she understands.

"He feels if he lets up he wouldn't be able to get going again," says Mrs. Nickelson, also a polio survivor. She still walks but is fighting fatigue and renewed weakness in one leg.

Encouragingly, evidence suggests that most post-polio patients will experience a decline of just 1 percent of their remaining strength each year.

Dr. Halstead believes that patients who manage their illness wisely can slow the decline further. "I'm impressed that people who really do slow down, don't overuse tired muscles, they seem to plateau."

To a patient who has enjoyed the use of both arms and legs, the challenge may be relatively modest: to postpone the need for a cane or brace. "But there are patients who never regained much," says Dr. Halstead. "I worked with a fellow in Houston who was totally paralyzed except the index finger in his right hand. Working from his chair, he could use a desktop calculator, a computer.

"Then he started losing the finger."

Polio's history

Scientists have yet to discover what causes post-polio syndrome. One theory holds that some people never cleared the polio virus from their system; instead it lay dormant for several decades and then awoke to cause new damage. Another theory blames a neurotoxin in the air or water.

The most popular theory is that of nerve cells on overdrive. It all goes back to polio itself.

Polio is a viral disease that infects the motor neurons, cells in the brain and spinal cord that transmit the electrical charges that move muscles. In most cases, it provoked nothing more than a mild illness. But in others, patients who felt feverish and achy one moment would collapse to the floor hours later, powerless to move.

The virus, multiplying wildly, had killed enough nerve cells to leave muscles without electrical charges. The result was paralysis.

The legs and lower trunk were the most frequently afflicted, but some patients were completely paralyzed. Worst off were patients whose respiratory or swallowing muscles suddenly quit. They would suffocate unless placed in an iron lung, or choke unless given special foods.

At its peak in 1952, polio found 50,000 new victims in the United States. An estimated 10 percent of paralyzed patients died, most because they couldn't breathe.

Although thousands of people still get polio in Asia and Africa, widespread vaccinations halted epidemics in this country in the 1950s and 1960s.

For most survivors, an encouraging thing happened in the weeks and months after their illness. In varying degrees, muscles would regain their strength. Patients who couldn't twitch would sit up in bed, or stand on rejuvenated legs.

Scientists now believe they understand what caused muscles to recover and, more recently, to fail: Although polio killed enough motor neurons to paralyze muscles, it didn't kill them all. Surviving cells compensated for dead ones, sprouting tentacles that attached to muscle fibers that had been orphaned.

These cells took on a burden that was many times their normal load. They served heroically for many years until, finally, the neurons started to wear down.

"It's like an eight-cylinder car that's lost four cylinders, and it's been going on four cylinders for 30 years," says Dr. Halstead, who is also fighting post-polio. "But the wear and tear on those remaining four cylinders causes them to wear down."

Stricken abroad

He remembers how polio struck.

In 1954, he was an 18-year-old college student hitchhiking through Spain. He believes he caught the virus while traveling through the croplands of southern France, where farmers traditionally used human manure to enrich the soil.

Hospitalized in Madrid, he spent a few weeks in the Spanish version of an iron lung, a hulking contraption made of plywood.

In time, he graduated from the iron lung to a wheelchair and then to a leg brace. At last, he regained enough strength to walk unassisted. He pursued a successful career as a specialist in rehabilitation medicine at the Baylor College of Medicine in Houston, working primarily with patients with spinal injuries.

Then, about 10 years ago, he began to feel a midafternoon exhaustion. A few times, in his car, he fell asleep while stopped at red lights. His legs began weakening, and his arms lost some of their steadiness and power.

Now, he uses a motorized scooter around the hospital, takes midday naps and wears a plastic brace on one leg.

He is a gentle man who seems at peace with the turnabout in his health. But the shock of this new illness, after three decades of good health, is still with him. "It was a surprise," he said. "No one put it all together. No one sounded the alarm."

Since establishing the Washington clinic in 1986, he has helped several hundred people adapt to post-polio symptoms.

"Everyone's a bit different. I've seen almost all examples of folks kind of flipping back and then reliving the early phases of the disease.

"That's the thing that's so scary. You feel like you licked the thing, and now you're faced with living it all over."

Patients learn that post-polio is a disease of compromise. There is no magic pill, just the need to slow down, to abandon what one patient calls the instinct to "push through it all."

"Almost every person I've seen who had polio when they were young in the 1940s and 1950s was a high achiever," says Dr. Kirby Von Kessler, an orthopedic surgeon who heads the post-polio clinic at Children's Hospital in Baltimore. "These high achievers who developed post-polio are often devastated because they were taught to be independent."

'An inward journey'

Many patients, however, view the changes philosophically.

"It's been an inward journey," says Ruth Bell, 50, who contracted polio in 1948 while a first-grader in Rochester, N.Y. "Competition is not among my high values anymore. It used to be pretty important to me."

Her attitude began to shift when her left leg, which had almost fully recovered from polio, began to weaken in the mid-1980s. Her friends may have noticed it first, remarking about a limp that seemed to appear from nowhere. When she tumbled twice while crossing Howard Street, she couldn't deny it.

Trained as a psychiatric nurse, she left her job directing the nursing program at Towson State University. She began teaching nursing students at the University of Maryland and, when that proved too stressful, took a three-day-a-week job as a parish nurse.

In 1988, she founded the Polio Support Group of Central Maryland. It has 100 members, almost all them battling post-polio syndrome.

Now, Mr. Nickelson runs the group, which meets monthly at the Slayton House in Columbia. Members talk about coping skills, ways to slow the disease's course and where to find knowledgeable doctors. There are 300 peer groups across the country, and they may have done more to steer polio survivors into proper treatment than has the medical profession itself.

Dr. Halstead says the federal government has largely ignored post-polio syndrome. For one thing, there will be hardly any polio survivors left in the United States by the middle of the next century.

But until then, thousands will be suffering. "It's discouraging to find out about people who never heard about post-polio syndrome and go to physicians who are unfamiliar with it," Dr. Halstead says. "They get treated for a variety of other things, or they go doctor shopping, often going to five or six doctors before they get a satisfactory answer."

When victims get the word, they often rely on the inner strength they developed the first time around.

Frank Gunther, the 61-year-old chairman of Blue Cross and Blue Shield of Maryland, was a star running back at Loyola High School hoping for a college football scholarship when polio struck, paralyzing him from his armpits to his toes. He cannot forget the date: July 4, 1950.

As his recovery took hold, he was able to discard first his leg brace and then his crutches. But in 1986, his legs grew weak again. He started using a cane, and then two canes for support. He began resting longer and more frequently during the day, and sold his prospering hardware business when it became obvious that he couldn't maintain his old pace.

"In a sense, I am pleased and happy with the fact I got in a great many years before this started," he says.

"People think I'm crazy. I appreciate what I have, and have made use of what I have. It's not a bitter experience."

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