Post-polio syndrome begins to trouble older survivors

From The New York Times:

SALT LAKE CITY — The polio virus, and its reign of terror in the American psyche, is faded history now. After a vaccine was introduced in the mid-1950s, millions of people sighed, turned the page and moved on. Many polio victims, often struck in childhood, tried to leave the story behind and forget, too.

“I worked alongside people who didn’t even notice my limp,” said Ronald S. Hanson, 78, a retired banker here who got polio at age 6, stunting his right leg but leaving him, he said, determined to live a normal life. “I didn’t want them to notice.”

So when Becky Lloyd, a researcher at the American West Center of the University of Utah, started an oral history project on polio last fall, she imagined weaving a tapestry of memory — a filling in of details about quarantines and rehabilitation units and hospital wards, with their rows of iron-lung breathing machines that became the most chilling symbols of the disease’s attack. Polio cases peaked in the United States in 1952.

But Ms. Lloyd soon found that polio’s past was not dead and gone. It was not even past. In all the early interviews, people talked about an after-echo legacy of the disease called post-polio syndrome that had come back to hit them in their 60s and 70s. Survivors who had battled through braces and operations decades ago wanted to talk about the present, Ms. Lloyd said, and the new battlefield they faced.

“Thirty, 40 or 50 years later, it’s like they’re getting the disease again,” Ms. Lloyd said.

Post-polio syndrome, first recognized by science in the 1980s, is not technically a disease — no bacteria or virus causes it, for example, like polio itself. Rather it is more like a car’s transmission breaking down after too many years of wear and tear on the gears: battered muscles and nerves that are pushed through a lifetime of strain to overcome and compensate for polio’s debilitating effects simply wear out sooner, doctors say.

And now the advancing age of the polio generation — an estimated 750,000 people in the United States — is compounding post-polio’s reach.

About two-thirds of polio survivors are over the age of 64, according to Lawrence C. Becker, the author of a study by Post-Polio Health International, an advocacy group. As many as 60 percent, by some estimates, will experience a post-polio aftershock, moving into an old age that few had prepared for.

Some polios, as survivors call themselves, say that post-polio has refocused their minds on how the virus shaped their lives — and sharpened their bittersweet memories.

“For years, I wouldn’t allow myself to think of polio,” said Virginia Lewis Hall (pictured), a retired teacher who grew up in a small town south of Salt Lake City and caught the disease at age 3, in 1949. “I always said, ‘I’ll just tough it out.’ ”

Ms. Hall, 63, said the effects of post-polio, particularly a deterioration of the breathing muscles, which forced her to take an early retirement and requires her to be on oxygen most of the time, have deepened her understanding of the mantra her parents taught her growing up: that she could choose any road she wanted in life, but that her journey would be different because of the disease.

In an interview over her kitchen table, Ms. Hall held up a photograph, taken when she was 5 and recovering from bone surgery, encased in a white plaster body cast from neck to toe, legs stiffened and splayed by a rod between her ankles. In the picture, her older brother, John, in a chest-cast himself from a polio operation (he died of respiratory complications at age 52) holds her up from behind. Huge grins illuminate their faces.

“My dad built a stand so I could stand up — it could hold me, and I could draw, and I could paint,” Ms. Hall said, describing her nine months in the cast. A love of art took root as she stood, otherwise immobilized but free to let her imagination roam. Today, water-color landscapes painted in retirement line the walls of her home.

Part of the problem for aging polio survivors is that, like World War II veterans or Holocaust survivors, their numbers are shrinking every year, which means that money for scientific research into post-polio is drying up, too.

Doctors with hands-on polio experience, like Jacquelin Perry — 91 and still practicing at a rehabilitation center in California — are disappearing even faster.

Dr. Perry began working with polio during World War II, when she was a physical therapist for the Army, and she has seen some patients continually for 50 years or more, creating lifelong charts of their progress, and in many cases, she said, their decline.

Her conclusion about polio and age is that the people who worked hardest to overcome disability have in many cases been hit hardest by its second-wave attack, as over-used muscles and nerves gave out after decades of strain. Her observation is backed up by numerous studies.

“It’s overuse,” Dr. Perry said in a telephone interview. “The people who tried hardest to be normal, and pushed hardest, have been hit more with post-polio.”

Some polio survivors call that the “Type A” problem. Overcoming polio, they say, required immense work, if not obsession, to adapt undamaged muscles and nerves to carry the load. Mr. Hanson, for example, the retired banker, said his left knee, unaffected by polio but burdened for years from carrying most of his body weight, gave out about 11 years ago and had to be replaced. The polio-damaged right leg, meanwhile, became even weaker.

“We’ve followed a lifetime of saying, ‘Push hard, keep going forward,’ ” said Prof. Fernando Torres-Gil, a polio survivor and director of the Center for Policy Research on Aging at the University of California, Los Angeles. “But now that’s an impediment to successful aging.”

Some people who have participated in the Utah project say that rethinking polio’s path — and accepting that post-polio could shape the rest of their days — has given them strength.

“I feel more in control,” said Fran Broadhead, 78, who got polio at age 6, in Alberta, before moving to Montana and later Utah.

Ms. Broadhead, whose childhood illness was relatively mild — she was up and playing with friends a year later — said she thought the weakness and fatigue that began hitting her in the last decade were mostly from polio. It is not a question her doctors can help answer, she said, since post-polio is rarely a formal diagnosis.

“It makes it easier for me to accept what I’m going through,” she said, “and to teach myself to adapt.”