W
hen Donald Boudreau's back began to hurt on the first day of school in 1949, he thought it was the stiff classroom chairs. But that night, he couldn't sleep, and "just walked around the living room in a circle." In the morning, the family called for the doctor, and Boudreau, 12, was rushed to Massachusetts General Hospital in the back of a police car.

There, his strength deteriorated as the polio virus, attacked nerve cells that controlled his legs, arms and torso. At the lowest moment, Boudreau said, "they flipped me over on my stomach, and I could just hold my head up and eat with one of my hands. I was that much paralyzed."

Slowly, he began to recover. At Christmas, Boudreau came home to visit in a wheelchair. By the next fall, he returned to school, with crutches and braces to help him walk. At 16, with the goal of driving in mind, he got rid of the braces, too. As an adult, he was strong enough to hike a mountain in Vermont and clear a wooded lot. But in the late 1970s, the old symptoms started coming back. Now the 60-year-old Milford resident wears a brace full time and relies on a scooter when he wants to venture out. The muscles in his right leg "have just stopped," he said.

For polio patients who fought back from paralysis as children or young adults, the disease can have a cruel aftershock. The actual virus doesn't reappear, but motor neurons that have been working overtime for decades start giving out. When that happens, polio survivors begin to slowly re-experience the symptoms that put them in braces, crutches and wheelchairs.

The disease has become the subject of museum exhibits and history books, and post-polio patients say they have long-since been forgotten. A vaccine was developed in 1955, and the disease was eradicated from the United States decades ago. In the popular imagination, the image of polio is black-and-white photographs of schoolchildren lining up for their shots, not 60-year-olds on crutches in 2006. Survivors who are experiencing recurring symptoms say they are often asked if they have multiple sclerosis or Lou Gehrig's disease.

There are between 500,000 and 600,000 polio survivors in the country, according to Jane Seward, the head of the viral vaccine program at the federal Centers for Disease Control and Prevention. About half of them experience post-polio syndrome.

When the symptoms come back for the second time, they don't go away, according to Dr. Jeff Cohen, a neurology professor at Dartmouth Medical School. Patients can expect to weaken as overworked motor neurons die, he said.

Or as Boudreau put it: "It's like an eight-cylinder car running on four cylinders."

A household word

Poliomyelitis had been around for centuries before the first U.S. epidemic was recorded in Vermont in 1894. The disease had a bumper year in 1916, devastating immigrant neighborhoods with a major epidemic that hit 27,000 people. It became a household word when Franklin D. Roosevelt, a polio survivor, was elected president in 1932.

In the immediate postwar period, the number of cases increased dramatically, with tens of thousands of patients falling sick each year. In 1949, the number of polio cases topped 42,000 in the United States, and in 1952, more than 57,000 people contracted the disease.

In New Hampshire, polio spread quickly during the summer of 1949, when the number of cases seemed to grow with the hot weather, the Concord Daily Monitor reported. That year, several summer camps across the state shut down because of polio, and there were 118 cases in August alone. By the end of the month, 11 cases were reported in a single day.

It was near the end of the epidemic when Clara McCann felt a headache unlike anything she had known. In September 1954, McCann, then 23, was a nurse on the night shift at Wentworth Hospital in Dover, and she thought she picked up the flu from her husband. She took a few days off and rested, but back at work, her headache "came back with a vengeance,"McCann said. Her back started to hurt, and "pains took the back of my legs." Her right leg, in particular, felt "funny."

"It felt like it was flopping, but I couldn't see anything," McCann said. When she bent to pick up a jacket, she fell down.

McCann, who was paralyzed for a time in both legs, just missed Jonas Salk's vaccine, which was approved in April the following year. Just a week before she fell sick, her doctor had promised he would try to get her in on a clinical trial of the shot, she said.

The Salk vaccine quickly slashed the number of polio cases in the country, decreasing them by 85 percent between 1954 and 1957. In New Hampshire, only eight polio cases were reported between July 1957 and June 1958.

Like hepatitis, polio is spread when fecal matter comes into contact with someone's mouth and is generally transmitted through poor hygiene and a lack of hand-washing. The disease multiplies in the intestine and can then enter the bloodstream and invade nerve cells.

It is still alive in parts of Africa and Asia: A total of 1,821 cases were reported on the two continents last year, including 727 cases in Nigeria alone, according to the World Health Organization. State health departments still require polio vaccines before kids start school. Last year, several Amish children who had not been vaccinated came down with nonparalytic polio in Minnesota.

"If we had a whole cohort of children who were not immunized, it could easily set the stage for an outbreak, even today," said Dr. John Modlin, a professor of pediatrics at Dartmouth Medical School and former chairman of the CDC immunization committee.

'They've never been quitters'

McCann spent over five months at Children's Hospital in Boston. Like Boudreau, she made it out of a wheelchair and onto braces, but she never again walked unaided. Still, she raised two children and kept a house, using her crutches when she went out.

But in the mid-1980s, McCann had an obvious sign that something was changing: She started falling down. She didn't know what was wrong. Like other survivors, McCann thought she and polio were done.

McCann, who lives in Somersworth, now uses a wheelchair full-time.

"These patients have overcome a lot to be functional and thrive, and they're usually pretty self directed, self-motivated people who are not going to complain too much," said Dr. Stuart Glassman, a psychiatrist at HealthSouth Rehabilitation Hospital in Concord. "They've never been quitters, and they've never wanted to have to think that this weakness would come back at some point."

Often, people who had the most severe cases and made the best recoveries tend to be more likely to suffer from post-polio, according to the Mayo Clinic. People who had polio as teens or young adults are also more likely to have problems.

Unlike polio, which seemed to strike some patients almost overnight, post-polio creeps up slowly. Doctors estimate that patients lose 1 percent of muscle strength a year. That rate isn't enough to make post-polio immediately noticeable, Glassman said, but it can make a difference over five years.

About 80 percent of patients referred to post-polio clinics in the 1980s and '90s said the muscles that had been hit the first time around were now weaker, according to data published in the Journal of the American Medical Association. About 86 percent of patients felt fatigue, and 45 percent of patients said they couldn't tolerate the cold.

There is no straight-out test for post-polio, meaning that doctors diagnose it by ruling out other possibilities. Patients who had polio can also wear out one body part in order to compensate for weakness in another.

"If you have a disability, and you live a long time, and you use your body in a way it wasn't supposed to be used, there will probably be some consequence," said Joan Headley, the executive director of the nonprofit group Post-Polio Health International.

Because it's a process-of-elimination diagnosis, polio survivors may think they have post-polio when something else is really going on, said Dr. Mohammad Salajegheh, a fellow in neurology at Brigham and Women's Hospital in Boston.

No one knows exactly how many post-polio patients there are in New Hampshire. McCann sends out regular newsletters to a mailing list of 200. But some of the recipients are doctors' offices, and McCann said she has no idea who else might be out there.

In the mid-1980s, several polio survivors in New Hampshire started a support group, and today, groups meet almost every month in Concord and on the Seacoast. But just a few people show up.

"The four or five of us who go to (the support group in) Concord just go because we've been friends for so long," Boudreau said. "So we talk about dogs or the weather. Someone new pops in maybe once a year."

Peter Mason, for one, has never been to a meeting. The 60-year-old from Stratham remembers eating lunch one day in 1954 when his twin brother began spewing milk from his nose. Mason said he and his sister started laughing. But the truth was, his brother couldn't swallow.

Both boys were diagnosed with polio in the base of their brain, and they had trouble breathing for several weeks - although neither required an iron lung. Now Mason has a little stoop in his shoulder and an occasional stiff neck, but that could just be his age, he said. Polio hasn't been a problem for him for more than 50 years.

"I was by the grace of God spared," he said.

A 'dying breed'

When Dee Marie Pinfield got polio at 13 months and was paralyzed from the neck down, she underwent a controversial polio treatment called the Sister Kenny method.

Named for the Australian nurse who came to the United States in the late 1940s to promote her polio cure, the Sister Kenny method involved applying 140-degree hot packs to the paralyzed limbs and then contorting them into different positions.

The medical establishment railed against it. But for some patients, it appeared to work. Pinfield was one of them.

"The Sister Kenny treatment enabled me to be ambulatory and then walk around in a brace," she said. By first grade, she could spend the day in school without her braces on, and by eighth grade, she was finally allowed to leave orthopedic saddle shoes - the only kind that gave her enough support - behind.

But if Pinfield was once part of a cultural moment, now, she said, she's part of a "dying breed." As one of the youngest polio survivors - she is 51 - Pinfield, who had polio in 1955, knows there are few people coming up behind her.

"Right now, my peers and popular American culture don't have a clue what post-polio is," she said. "Because we do have the vaccine, people don't realize that there are people going through this syndrome."

Pinfield, who walks with a slight limp, still drives short distances and relies on her crutches when she goes out. With moderate exercise, she's trying to postpone a wheelchair, but she has set herself up in a wheelchair-friendly first-floor condo.

When people see her on her crutches, Pinfield said, they often assume she was in an accident.

"People will see me and ask, 'Are you still on those things?'" she said. "Hello, I'm on these for life."