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Post-polio syndrome debilitates survivors

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  • Post-polio syndrome debilitates survivors

    Saturday, December 14, 2002

    Last modified at 8:39 p.m. on Friday, December 13, 2002

    Post-polio syndrome debilitates survivors

    Symptoms appear long after initial infection

    By P. Douglas Filaroski
    Times-Union staff writer

    It took college, a marriage, three children and a career before devastation from childhood polio faded into Phillippa Eckert's past.

    By middle age, Eckert had recovered from paralysis that struck in her 16th summer to where as a new wife she was walking with only a slight limp.

    "As far as my health was concerned, everything was put behind," said Eckert, who lives in
    Jacksonville. "At least that's what everyone thought."

    But decades after public health declared defeat over a sad American epidemic, polio survivors are being revisited by a haunting new affliction: post-polio syndrome.

    In their golden years now, many who recovered from the childhood scourge of the 1940s and 1950s are being hobbled again with new muscle weakness, fatigue and pain.

    First told it was old age -- or in their heads -- patients with the syndrome now number about 1 in 4 of the nation's 1.6 million polio survivors.

    History of polio and post-polio syndrome

    * 1789: Polymyelitis, or polio, was first described by Michael Underwood in England as a debility of the lower extremities afflicting children.

    * 1843: The first polio outbreak occurs in the United States. For the next hundred years, increasingly large epidemics are reported in northern hemisphere nations each summer and fall.

    * 1952: Polio, which can cause paralysis, reaches its peak in the United States, with more than 21,000 cases annually.

    * 1955: Jonas Salk develops the first safe, effective vaccine that uses killed polio virus to stimulate production of antibodies in the body.

    * 1979: The last case of wild-virus polio is reported.

    * 1980s: Patients complaining of post-polio symptoms petition the National Institutes of Health to study the troubling new phenomenon.

    * 1995: Researcher Marinos Dalakas provides a definition and clinical description of post-polio syndrome in the Annals of New York Academy of Sciences.

    * 1997: The seventh International Post-Polio and International Living Conference is held in St. Louis.

    Support group
    The First Coast Post-Polio Support Group meets monthly to discuss research, symptoms and treatment. For more information, call (904) 225-8059.

    The Social Security Administration in 1997 qualified patients with post-polio syndrome for disability benefits. The government included a description of the syndrome in its papers on the polio virus.

    The cause is unknown, but thought most likely to be failure of motor neurons, overworked after years of compensating for neurons destroyed by polio.

    It strikes 30 to 40 years after the initial polio, dredging up memories of years spent as an outcast and knocking many survivors back off their feet.

    With Eckert, first there was tiredness and weakness. In her 50s, she went from four laps in the pool to two, then none at all. Over the next decade, she was diagnosed with the syndrome, prescribed a full leg brace and a cane, and now uses an electric scooter to go even a few feet inside her home.

    "I was not ready for this," said Eckert, who as a teenage polio victim spent 18 months hospitalized. "I kept thinking, 'Am I going to go back to the way I was?'"

    A haunting return

    For decades, doctors told polio survivors to remain active and achieve despite limitations from braces, crutches and even wheelchairs. Doctors, parents and supporters pointed to Franklin Roosevelt, who became a U.S. president despite impairment left by polio.

    Stuart Caplin, an Orange Park physician who contracted the virus in the 1950s, recalls playing basketball with neighborhood kids while wearing braces.

    Back then, summertime polio epidemics caused towns to cease community activities, officials to divert traffic around infected cities and families to hide or deny cases.

    Research to understand the condition did not begin until post-polio syndrome struck years later.

    Now studies blame overworked neurons, and physicians like Gundi Thorsteinsson are trying to reverse years of thinking about regimens for polio survivors.

    Thorsteinsson, a Mayo Clinic Jacksonville physician, is among the nation's leading post-polio experts. He tells patients with post-polio syndrome they mostly need rest, not rigor.

    The syndrome isn't fatal, but there is no known cure.

    Thorsteinsson prescribes more sleep, less walking and other ways to reduce stress on overworked muscles.

    "They come to me and I tell them 'You need to go back to the crutches.' That's not easy," Thorsteinsson said. "Many don't accept the fact they need to change."

    Coping and surviving

    Caplin also tried to forget the childhood trauma. By his late 40s, he had become a Florida table tennis champ, married, had children and worked as a doctor delivering babies.

    "It was behind me," Caplin said. "Or so I thought."

    He began wheezing after walking down the hall of his offices. He was weak, tired and had pain on his right side -- not the left, which was paralyzed from polio when he was eight months old.

    The syndrome often includes new muscle weakness and pain, as well as problems breathing, sleeping, swallowing and tolerating cold temperatures.

    "Initially, I thought I was getting older, but it just kept getting worse," said Caplin, 53, who retired and also uses an electric scooter on the advice of his doctor.

    Caplin said it's emotionally difficult going from an active life as a physician to needing help just to get around the grocery store.

    "People treat you differently," he said. "I went from the doctor wearing the white coat to the guy in the scooter. That's been tough, too."

    It's also tough on patients to relive a time of fear and prejudice. Caplin acquired the virus during the Jones Beach epidemic in New York in the late 1950s.

    His mother tells him families had been afraid to go out in public when Caplin came down with a fever and paralysis that hospitalized him for months as an infant.

    "She was scared to death," Caplin said of his mother. The stories, as well as the residual physical impairment, followed him through his youth.

    Caplin joined a local post-polio support group a couple of years ago and served as president. The group holds monthly meetings that attract 30 to 40 afflicted patients.

    Thorsteinsson attends meetings regularly to tell patients how to recognize and treat their new illness.

    "Polio is a strange disease. People may have been paralyzed, then gone on to lead completely normal lives. You're looking at one of them," said Thorsteinsson, who also had polio as a youngster, then recovered almost completely.

    Others spent years in wheelchairs and never walked without aid of crutches, braces or walkers. Only about 1 in 10 polio cases did not result in paralysis.

    The risk of developing the syndrome increases with the degree of residual impairment and length of time since acquiring the polio virus in childhood.

    While overworked neurons is the most widely believed cause, other studies suggest the blame is immunological or leftover virus particles in the central nervous system wreaking havoc.

    The challenge is correcting conventional wisdom that survivors should continue taxing muscles.

    "There has been significant denial over the years about the condition of polio survivors,"

    Thorsteinsson said. "They've always operated on the edge. My job is to bring them down."

    Staff writer P. Douglas Filaroski can be reached at (904) 359-4509 or via e-mail at