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Polio Symptoms Recur for Some Survivors

Post-polio syndrome can strike many years after initial attack

MONDAY, May 10, 2004 (HealthDayNews) -- When Robert "Zig" Burns was 12, he was stricken with polio and was told he would never walk again.

But he pushed himself gradually from an iron lung to crutches to a cane and then, two years later, onto the high school football field and the tennis court.

Now, 52 years later, Burns is back in braces.

Life was once unspeakably cruel to an estimated 1.6 million polio survivors still alive in the United States today, among more than 20 million such survivors around the world. Now life is once again doling out a special brand of suffering to those who did not get doses of Jonas Salk's lifesaving polio vaccine when the virus became an epidemic back in the 1950s.

Burns is one of those unlucky ones. Today, he suffers from post-polio syndrome, a collection of symptoms that can be eerily reminiscent of the original illness.

He first contracted the virus in the summer of 1952, when as a 12-year-old he spent his first summer at a beach house on the New Hampshire seacoast. His father, one of the millions of parents who lived in mortal dread of polio, had purchased the beachfront cottage so the family wouldn't have to swim in pools or lakes, which were common reservoirs of the virus.

At the end of that July, however, Burns recalled, he was feeling lethargic and staying in the house all day, which wasn't at all like him.

"I used to play football from sun up to sun down," he said. His parents were worried enough to take him back to their home in Lowell, Mass. The pain in his legs kept him up all night.

"The only relief was to keep walking, walking back and forth," he said of one fateful night. "Finally, close to dawn, I went to bed. When I went to get up to go to the john, I fell flat on my face. I was paralyzed."

Burns was rushed to Boston Children's Hospital, where he was to stay for more than two months as he began his struggle to recover.

Today, his latest struggle with post-polio has spanned a decade.

His troubles began 10 years ago, after a bad car accident. He had persistent problems with his back and started falling down again. No one knew what was wrong, and Burns himself didn't think the problems had anything to do with polio until he read Dr. Julie Silver's Post-Polio Syndrome: A Guide for Polio Survivors and Their Families, only a year or two ago.

"I thought, 'Dear God, she's writing about me,'" the 64-year-old banker recalled.

Post-polio syndrome is "not a recurrence of polio, although it does include some symptoms similar to those that people experienced with polio -- for example, fatigue and muscle and joint pain, which gradually worsens," explained Christopher P. Howson, vice president for global programs at the March of Dimes in White Plains, N.Y. The organization was first known as the National Infantile Paralysis Foundation when it sponsored the Salk vaccine trials half a century ago.

Other symptoms of the syndrome can include difficulty sleeping, swallowing and breathing, but different people experience the syndrome differently, which makes it very difficult to recognize.

As many as 40 percent of polio survivors end up with the syndrome, which was first described by medical professionals in the early 1980s. But physicians, many of whom came of age when the ravages of polio were but a distant memory, often tell their patients that they are simply aging.

Little is known about what causes post-polio syndrome, or why some people are more susceptible than others.

Polio itself causes motor neurons (the nerve cells in the spinal cord that control muscles) to die. Some of these cells manage to survive, however, and, after the initial attack, send out new nerve connections to compensate for the loss.

Some experts speculate that post-polio syndrome "may result at least in part from unusual stress placed on the remaining motor neurons. Some research also suggests that it may be partly a result of aging," Howson said. "After age 60, most of us begin to lose motor neurons in our spinal cords. People who have not lost motor neurons to polio can lose a considerable number before experiencing weakness, but polio survivors don't have this cushion, so aging is accelerated."

"Post-polio syndrome tends to affect more severely those who rehabilitate themselves more actively," he added.

There is no cure for the condition. Treatments include ensuring that people get enough rest, making sure patients don't overuse or overstrain their muscles, and arranging their lives to be as stress-free as possible.

"There's not one specific drug that will make it all go away, but there is a lot of help for people with post-polio syndrome, including getting on the right exercise program and medications for pain and controlling weight," said Silver, who is director of the International Rehabilitation Center for Polio at Spaulding Rehabilitation in Framingham, Mass., and an assistant professor of physical medicine and rehabilitation at Harvard Medical School.

"In general, [post-polio syndrome] is slowly progressive but, if you get the proper treatment, you can really make a big difference in how someone functions and perhaps how quickly they'll progress," she added.

Burns, who is now a grandfather of 8, has had to go back to managing symptoms that he had thought were long gone.

He wears braces on both legs and has made accommodations in his house in Dracut, Mass. A handle in the bathtub allows him to get in and out more easily. The hardwood floors in the downstairs portion of the house make it easier for him to drag or slide himself from one piece of furniture to another (usually at the end of the day, when he has taken his braces off). The upstairs has carpeting, which has caused him to fall on numerous occasions. "That kind of scares me," he said.

Fortunately, Burns has been bench-pressing (he can lift 250 pounds) ever since he was a kid.

"I wanted to make sure if I fell, I'd have upper body strength," he said. This strength comes in handy two to three times a month, Burns added.

"You go through this period of time in your life when you feel so good that you sort of get over it. One of the things that drove me was I desperately wanted to play football. I was bound and determined to play, and I did. That was a period of life where everything was fairly normal," he said. "It's almost as if the damage that was done when we were kids was lying in wait as aging set in."

That doesn't stop him, however, from keeping a football in his car in case he wants to toss it around with neighborhood kids.

"I'll go hobbling out and throw it to them," he said.

More information

Find resources on post-polio syndrome at International Rehabilitation Center for Polio and Post-Polio Health International.

SOURCES: Robert "Zig" Burns, banker, Dracut, Mass.; Christopher P. Howson, Ph.D., vice president, global programs, March of Dimes, White Plains, N.Y.; Julie Silver, M.D., assistant professor, physical medicine and rehabilitation, Harvard Medical School, Boston, director, International Rehabilitation Center for Polio at Spaulding Rehabilitation Medicine, Framingham, Mass., and author, Post-Polio Syndrome: A Guide for Polio Survivors and Their Families; photo courtesy of International Rehabilitation Center for Polio (IRCP) at Spaulding Rehabilitation Medicine, Framingham, Mass.
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