Warm Springs Georgia Polio Rehabilitation

Tuesday, May 03, 2005

Erik S. Lesser for The New York Times

Though a vaccine banished polio decades ago, each year about 100 people with the disease go to Roosevelt Warm Springs Institute for Rehabilitation in Georgia, where technicians refurbish leg braces and modify shoes rather than replace them. Above, Mark Lee shined a 20-year-old brace.

April 30, 2005
A Long-Ago Refuge Still Tends to the Needs of Polio Survivors
By SHAILA DEWAN

WARM SPRINGS, Ga., April 26 – Like a whale-bone corset or a crank-start Model T, Jeanne Carlock’s leg brace is a contraption from another time.

Fashioned from steel and hand-cut leather straps, it is nothing like today’s lightweight, high-tech orthotic aids. But Ms. Carlock, who is 61 and a polio survivor, has worn it for 20 years, and she is not about to trade it in.

Instead, she has brought it for a tune-up to the place where it was made, the brace shop at the Roosevelt Warm Springs Institute for Rehabilitation.

Mark Lee, an orthotist who began working in the brace shop just after high school and who is now 35, will trace the worn-out straps onto new leather, taking care to punch holes in exactly the same places as before.

"The hard-and-fast rule with polios is, don’t change anything," Mr. Lee said. After consulting with Ms. Carlock, he set the brace on a wooden work counter covered with ribbons of leather. Evidence of a dying art is everywhere: the taciturn technicians, the black Singer sewing machines, a blacksmith’s anvil.

Each year, about 100 people come from as far away as Israel and Switzerland to the institute, which began as the country’s only refuge for a group who were feared and rejected more than lepers: people with polio. Though Jonas Salk’s vaccine began to banish the disease in this country 50 years ago, it came too late for these survivors.

And so they come to the Warm Springs Institute, a lush, landscaped campus of historic cottages and buildings in the piney woods about 70 miles southwest of Atlanta, founded in 1927 by polio’s most famous survivor, Franklin D. Roosevelt.

They are drawn by people like Ellis Florence Jr., the second-generation brace fitter who made Ms. Carlock’s brace, and Mr. Lee, who was trained by him – people on whom their day-to-day comfort depends.

Orthotics makers say that polio survivors are notoriously difficult to fit because their weakened limbs still have sensation.

"Even with their shoe, if it’s off just a 16th of an inch, they can feel it," said Tim Butler, the operations manager at the shop. "They’ll tell you, ‘That lives too low,’ or ‘That lives too high.’ "

The brace shop technicians have learned over the years that many polio survivors, or polios, as they are referred to in institute shorthand, are not receptive to innovation. Plastic feels too light and does not breathe. The only people who will use a new type of ankle pivot are people who never tried the old type.

"It’s hard enough to get used to one brace," Ms. Carlock explained. "It’s not something you shop around for."

In its first half-century, Warm Springs treated 2,000 polio patients a year. There are still a million polio survivors in the United States, according to the most reliable statistics, which are 10 years old, said Joan L. Headley, executive director of Post-Polio Health International, an advocacy and education group in St. Louis. Some 450,000 of those said they had residual effects ranging from weakness to paralysis.

Unlike many of the polio patients at Warm Springs, Ms. Carlock, a retired guidance counselor from Virginia Beach, was not sent here as a child. She contracted polio, also known as infantile paralysis, in 1949 at age 5. It affected her from the neck down, but she recovered. For a few decades, she lived a fairly normal life.

Then in her late 30’s, she began to notice a weakness in one knee. It was the beginning of post-polio syndrome, which brings polio survivors new fatigue and weakness – almost as if the virus were reawakening after decades of retreat. As with polio, there is no cure for post-polio. Ms. Carlock can no longer walk without a brace, and uses an electric scooter much of the time.

"I’m a positive thinker," she said. "I’ve always thought about it, like, what do I need to do, to do such and such?"

When Ms. Carlock was 5, little was understood about how polio chose its victims. The epidemics that swept the country beginning in 1916 emptied swimming pools, movie theaters and libraries. Terrified parents kept their children indoors or cautioned them not to play barefoot. Children, in turn, lived in dread of the iron lung.

Adults, too, were vulnerable. Roosevelt, a wealthy Democrat who had been groomed for a life of political success, contracted polio at age 39, and lost the use of his legs. His career seemingly over, he retreated into a deep depression, living for a while on a houseboat off the Florida coast. Then he found Warm Springs, part of an aging spa, where he had heard about a boy who had regained the ability to walk after exercising in the town’s mineral-laden pools.

The isolation of rural Georgia was a relief to Roosevelt. But when a newspaper article appeared saying that Roosevelt, a prominent political figure, thought the buoyant waters could help him mend, Warm Springs became an instant pilgrimage site. Robbed of his privacy, Roosevelt planned to leave.

But he began to see that other polio patients, particularly those who were not wealthy, had nowhere else to go, said Margaret Nagle, the screenwriter of "Warm Springs," an HBO movie about the president’s connection to the little town that will be broadcast Saturday. Even at Warm Springs, the influx of polio patients was bad for business. They were restricted from using the pools at busy hours then banned altogether. They dined in the basement and filled tubs in the woods with spring water.

Ultimately, Roosevelt spent much of his personal fortune to buy Warm Springs and to start a therapy center whose operations were paid for by the Foundation for Infantile Paralysis, which later became the March of Dimes. After he became president, he built a cottage on the grounds that became the Little White House, now a state historic site. He died there, in 1945, a few hours after suffering a stroke as he posed for a portrait in the living room. In 21 years, he had visited Warm Springs 41 times.

Although he strove to hide his paralysis in public, the disease played a large part in his life. Some say the experience – not just with polio, but with the poor rural Georgians he encountered – shaped Roosevelt’s presidency, particularly the driving principles of the New Deal. "He goes down there, and instead of going through his own suffering, he experiences the suffering of others," Ms. Nagle said. "Here’s this really self-centered, Ivy League education, trust fund man whose character was supposedly formed. His character was reformed."

Eleanor Roosevelt wrote of her husband: "Franklin’s disease gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons: infinite patience and never-ending persistence."

Some credit President Roosevelt with setting an example that helped many polio survivors emerge with stubborn determination rather than the scars of social disdain. "We’re Type A personalities," Ms. Carlock said. "My support group at home is so busy we barely have time to meet."

Those qualities can border on the extreme, institute employees say.

"There wasn’t an Americans With Disabilities Act," said Mr. Lee, the orthotist. "They were taught to be very outgoing, very strong willed, to be that way in order to survive. They were taught to be that way by the therapists here."

Amid the spinal-cord-injury patients and the Paralympic athletes at Warm Springs, now a comprehensive therapy center for people with disabilities, the polio patients stand out as needing longer appointments and more attention. One woman even brought 25 pairs of shoes to be modified to fit her braces. But at Warm Springs, no one seems to mind.

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