By Peggy O'Farrell
The Cincinnati Enquirer

Sheila Stuckey was 7 when she contracted polio in August 1949. She spent two months in an iron lung at the old General Hospital.

Dr. Bea Lampkin remembers neighbors leaving food at the foot of the porch of her family's home in Tuscaloosa, Ala., for the three weeks they were quarantined after she got polio. It was August 1941.

Dr. Bea Lampkin (Steven M. Herppich photo)

Lampkin, 70, and Stuckey survived the virus, the months in rehabilitation, the lessons learned in hospitals and schools for "crippled" children.

Now, decades later, they find themselves fighting polio again.

Like thousands of other survivors, the two women have been diagnosed with post-polio syndrome (PPS), a mysterious illness that strikes decades after the initial infection. Doctors don't know why it happens, and they can only treat the symptoms. But PPS patients are determined to hang onto their independence for as long as possible.

It isn't fair, concedes Lampkin, a cancer specialist at Cincinnati Children's Hospital Medical Center. But she takes some consolation in knowing the disease that forced her into semi-retirement will probably never afflict another generation.

"No one really understands it yet, and they probably never will, because luckily, at least in the United States, polio survivors are a dying breed. Thanks to (Dr. Albert) Sabin, you just don't see polio in the U.S. anymore," she said. Today, polio is almost extinct: The virus that terrorized Americans lives "wild" in only six nations now. Since 1972, the handful of cases reported every year in the United States have all either been brought in from other countries or are related to vaccination. Vaccines developed 50 years ago by Dr. Jonas Salk, and later Dr. Albert Sabin, a virologist at Children's Hospital, helped wipe out the virus.

Problems resurface

In the early 1980s, polio survivors began reporting fatigue and weakness, muscle pain and new problems breathing or swallowing. Sometimes, the problems surfaced in muscles destroyed by their original polio infection. Sometimes new parts of the body were affected, and symptoms vary from person to person.

Post-polio syndrome is "a diagnosis of exclusion," said Joan Headley, executive director of Post-Polio Health International, based in St. Louis. The non-profit organization provides advocacy and support for PPS patients.

Because PPS is hard to diagnose, it's hard to know how widespread it is. The National Institute for Neurological Disorders and Stroke estimates that about a fourth of polio survivors are affected by PPS, but some studies put the figure at more than 60 percent. About 300 men and women belong to The Polio Connection, a local support group for people with post-polio syndrome, including Stuckey and Lampkin.

PPS is not a case of the polio virus "reactivating," said Dr. Thomas Watanabe, a physical medicine and rehabilitation specialist and medical director of the polio survivors' clinic at The Drake Center. Doctors aren't sure exactly how PPS occurs. During acute polio infection, the virus kills the nerve cells that allow affected muscles to move. Many experts believe that, after the infection, surviving nerve cells grow "sprouts" that power the affected muscles. PPS apparently occurs when those "sprouts" die off.

PPS is rarely fatal; in some cases, it can cause respiratory failure. No drug or procedure has been developed to reverse the symptoms, which gradually intensify. Researchers are trying different medications, including pyridostigmine, which is used to treat forms of muscle weakness, to see if they can help. Most patients have to adjust their lifestyle for whichever symptom is the worst. Watanabe and other experts usually advise getting extra rest and light exercise when possible.

First, the fatigue

Sheila Stuckey (Steven M. Herppich photo)

Stuckey, like most PPS patients, noticed the fatigue first. For years, she had been able to get around with crutches and a brace on her left leg.

But in the last several years, the Hyde Park woman's arms and legs have gradually grown weaker. She can still walk for short periods, but when she goes out, she uses a scooter chair. At night, she needs a respirator to help her breathe. During the day, she uses a portable oxygen tank.

"I guess I just didn't feel quite as well as I had before," Stuckey said. "You still work and go on. I really didn't dwell on it until it got a little worse."

PPS forced Lampkin, also of Hyde Park, into semi-retirement in 1991. She didn't have the strength to work full-time anymore. For years, she was able to walk with crutches after polio weakened the muscles in her legs. Now, she needs a wheelchair most days.

"Old polio caught up with me," she says. "I've gotten weaker, but I'm totally independent, and I still have my own house."

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For information on the support group, write The Polio Connection, P.O. Box 9576, Cincinnati, OH 45209.

E-mail pofarrell@enquirer.com