ED Bollenbach thought he had had his final encounter with polio in Yonkers, New York, in 1954, when the disease cut his legs out from under him while he was walking home from second grade.
But 30 years later, Bollenbach, an avid bicyclist, cross-country skier and swimmer, felt pain and weakness in his back and right leg, the same areas hit hardest in his youth by the polio virus.
The microbiology and chemistry professor at Northwestern Connecticut Community College in Winsted visited several doctors before one told him he had post-polio syndrome, a condition marked by extreme muscle weakness and fatigue that was only beginning to be recognised in 1984.
By some estimates, as many as 40% of the United States’ 600,000 polio survivors might be afflicted with the syndrome, which usually surfaces 10 to 40 years after initial onset of the disease. Yet no effective treatment is available.
“I went from being a pretty athletic guy to somebody who needs a motorised scooter to get around the house,” said Bollenbach, now 56.
Bollenbach is among the last generation of Americans who will struggle with the crippling legacy of the feared disease, which disappeared in the United States in the years after the introduction of the polio vaccine in 1955.
Polio epidemics paralysed or killed thousands of children and adults during outbreaks in the last century, sometimes forcing patients into iron lungs when their respiratory systems were attacked.
The polio virus infected people who had ingested minute amounts of faecal matter from contaminated water or unsanitary facilities. Panicked parents kept children away from swimming pools and other public places during outbreaks.
Many polio survivors did make full recoveries. By the early 1980s, Bollenbach raced bicycles and was a long-distance swimmer and a competitive white water canoeist.
But then he felt his muscles begin to hurt and then weaken, just as had happened when he was a child.
Polio survivors such as Bollenbach had recovered because surviving nerve cells compensated for the loss of others by making more connections than normal to muscle groups, said Dr Phil Arnold, a physiatrist – a physician specialising in physical medicine and rehabilitation – who originally diagnosed Bollenbach and who treated many cases of post-polio syndrome before he retired.
That means polio survivors had no reserve of nerve cells, and as they lost those cells to aging, they became more susceptible to muscle fatigue and weakness, Arnold said.
Bollenbach, who has researched post-polio syndrome during the last 20 years and written several articles on the disorder, said he isn’t so sure that is the full explanation.
He points out that many polio survivors, including some severely afflicted in their youth, never develop post-polio symptoms. One study detected fragments of polio-virus protein in the blood of people with post-polio syndrome and not in the blood of other polio survivors, he said, suggesting some other mechanism might be at work.
Before post-polio syndrome was understood, most polio survivors were told to exercise strenuously to rebuild muscle strength.
“Patients were encouraged to exert themselves,” said Dr Michael Collins, a physiatrist at Gaylord Hospital in Wallingord, Connecticut. “It turns out that was not right.”
In fact, excessive exercise makes symptoms worse, Collins and Arnold say.
“The body needs stimulus, but only just to the point of fatigue, no further,” Arnold said. “You try to find that limit – and then stop.”
That is particularly difficult for post-polio patients to accept, Bollenbach said. He said he and many others with post-polio rebel against using the leg braces and wheelchairs they had depended on as children.
Bollenbach has a vivid recollection of collapsing several times on his walk home from school in 1954 and of the first few weeks he spent in an isolated infectious-disease ward with few lights and no windows, a petrified 7-year-old tended by nurses wearing masks.
“It was like being abducted by aliens,” Bollenbach said.
He spent six months at the hospital recovering and undergoing physical therapy.
“But I didn’t feel as bad then as I do today,” said Bollenbach, who retired from teaching last year.
Besides using a motorised wheelchair and a scooter, he wears a brace on his lower right leg.
“My biggest problem is my lower back and right hip,” he said.
Despite the pain and weakness, he still manages to swim three times a week. “You adapt,” he said. “But you never really get used to it.” – LAT-WP
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