Dr. Lauro Halstead is one of the last remaining doctors in America with a specialty in treating people with polio. One reason for his interest: He had polio, too. He's past retirement age, but the number of aging patients who want to see him is growing.
Dr. Lauro Halstead is one of the last remaining doctors in America with a specialty in treating people with polio. One reason for his interest: He had polio, too. He's past retirement age, but the number of aging patients who want to see him is growing. Jessica Goldstein/NPR
Julie Lewis contracted polio at age 9 in 1963, probably from the vaccine. Halstead identifies the one visible sign that remains: an atrophied hand; the muscle at the base of her thumb has withered.
Julie Lewis contracted polio at age 9 in 1963, probably from the vaccine. Halstead identifies the one visible sign that remains: an atrophied hand; the muscle at the base of her thumb has withered. Jessica Goldstein/NPR
Post-polio syndrome is a condition that affects polio survivors decades after they were first struck by the disease. The condition is mainly characterized by new weakening in muscles and joints, as well as general fatigue and exhaustion after minimal activity.
Less common symptoms include muscle atrophy, breathing or swallowing problems and sleep-related breathing disorders, such as sleep apnea. In general, the more severely stricken a patient was as a child, the more severe the post-polio symptoms.
Post-polio syndrome is rarely life-threatening, however muscles and joints can get progressively weaker, and the person may experience fatigue and exhaustion. In most people, post-polio syndrome progresses slowly, with new symptoms and declines followed by periods of stability.
Doctors and scientists don't know why the symptoms occur up to 30 or 40 years after the initial polio illness. However, they think the syndrome is related to the degeneration of nerve cells. When the polio virus infects the body, it affects nerve cells called motor neurons that carry messages between the brain and muscles.
According to estimates by the National Center for Health Statistics, more than 440,000 polio survivors in the United States may be at risk for post-polio syndrome. Depending on how the disorder is defined and which study is quoted, researchers estimate that the condition affects 25 to 50 percent of these survivors, or possibly as many as 60 percent.
Doctors diagnose post-polio syndrome by completing a comprehensive medical history and neuromuscular examination, and by excluding other disorders that could explain the symptoms.
Because symptoms often vary, there's no single treatment for post-polio syndrome. The goal of treatment is to manage symptoms and help make the patient as comfortable and independent as possible.
Conserving energy by pacing physical activity, resting frequently and using assistance — like a cane or a wheelchair when necessary — can help. A number of studies have demonstrated that nonfatiguing exercises can improve muscle strength, but patients should consult with their doctors before doing physical therapy.
Pain medications, including aspirin and other nonsteroidal anti-inflammatory drugs, can ease muscle and joint pain. However, so far no clear benefit has been found for any of the numerous other drugs that have been studied as treatments for post-polio syndrome.
One challenge is that many doctors do not have experience treating patients with polio or post-polio syndrome, says Dr. Lauro S. Halstead in his book Managing Post-Polio. He recommends working with your primary care doctor to find a physician with expertise in post-polio care.
— Kathleen Masterson
Sources: National Institute of Neurological Disorders and Stroke, Mayo Clinic, and Managing Post-Polio by Dr. Lauro Halstead
Halstead checks the strength of Lewis' hand. She relearned how to use it after polio, including learning to type with just four fingers.
Halstead checks the strength of Lewis' hand. She relearned how to use it after polio, including learning to type with just four fingers. Jessica Goldstein/NPR
Dr. Lauro Halstead is one of only a handful of doctors in the U.S. who specializes in polio — and he speaks to his patients with authority. He was one of the first doctors to publish evidence of a startling medical problem: Twenty-five years ago this month, he presented evidence that people who'd had polio as children were reporting a new weakening of their muscles as they got older. It became known as post-polio syndrome.
But there's one more thing that gives him an understanding of his patients: Halstead is a polio survivor, too.
At the National Rehabilitation Hospital in Washington, D.C., Halstead comes down the hallway on an electric scooter. He is 73, and he would like to retire, but he can't. The number of aging patients who want to see him is growing. Post-polio patients — including many from around the country and even from other countries — come to his polio clinic here.
On a late April day, Edith Gerver sits in an exam room, with a bamboo cane at her side. The 83-year-old explains that her daughter is moving to Florida, and she's thinking of going with her. But she's having a problem: Lately she's been losing her balance and falling, a few times a month. She has come to see Halstead, hoping he can come up with a solution.
The doctor asks her to take off her shoes. Her feet are strange: There are scars, but no ankles. Multiple childhood surgeries fused her bones so she could put weight on her feet and walk. Halstead uses his arms to press against her feet, testing the strength in her legs.
He takes a medical history and gets a sense of her active life. They share their polio stories. He was 18, a college student touring Europe, when he got sick. She was an infant in Germany, and later, when her Jewish family fled to the United States, she wasn't at first allowed in because she had had polio.
Halstead tries to persuade Gerver that it's time to start wearing a leg brace. He rolls up his pant leg and shows the one he uses. She says she tried one before, but it was too uncomfortable. He tells her she should get a scooter, like his. She says it would be too hard to get around with it.
"What I want to do," he tells her, "is be able to make any modification that you are interested in that would help you have a more comfortable, enjoyable life."
But it's not easy for his patients to do things that look like they'd be giving in to their polio. People with polio worked hard to overcome their illness, so it goes against their nature — when post-polio syndrome kicks in — to slow down.
"So you may think, you think that maybe that's like giving in?" he asks her.
"I feel that as long as I can stand on my two legs, I'm ahead of the game," the woman says. "I know that doesn't make much sense."
"No, it doesn't," the doctor replies softly.
"But it's who I am," Gerver replies. "And I think polio made me that way."
"OK," says Halstead. "I will accept that."
But he doesn't give up. He keeps pushing her gently over the hourlong appointment. By the end, she agrees to let him call the hospital's orthotist. She'll try one more time to wear a leg brace.
Halstead can relate to patients like Gerver because he, too, is managing his post-polio syndrome. "I'm having a lot of the same issues that she is in terms of slow, progressive weakness in my legs," he explains. "So I can walk shorter and shorter distances. I continue to use a motorized scooter for longer distances, longer than 20, 30, 50 feet. I take afternoon naps to help get me through my afternoon fatigue."
There hasn't been a new case of polio in this country from the "wild" live virus since 1979. The use of the live-virus vaccine, which sometimes can cause infection, was discontinued nine years ago.
Still, there are hundreds of thousands of polio survivors alive in the United States. The National Center for Health Statistics estimates that there are more than 440,000. The leading polio survivors' group, Post-Polio Health International, puts the numbers at 775,000 or more. Many of these survivors are still paralyzed. But most aren't and, from looking at them, there's no way to know they had been infected. But all polio survivors face the threat that polio can come back as they get older — the post-polio syndrome first described in the mid-1980s by doctors like Halstead and Marinos Dalakas.
Another patient, Julie Lewis, waited six months for her appointment with Halstead. This is her first time to the clinic, so she spends two mornings seeing Halstead and his team, which includes physical and occupational therapists, and a social worker.
She has a busy and important job as a hospital administrator. She, too, finds it hard to accept all of Halstead's advice to slow down — including taking a nap at the office. After her long sessions with Halstead, she goes back to the office.
Lewis, at least until now, has always been able to hide her polio. But right away, Halstead spots the one visible tip-off. He holds his hand to hers. On both of them, the usually thick muscle at the base of the thumb has withered.
"That looks familiar to me, your hand," Lewis tells the doctor. "I like your hand."
Halstead laughs and says, "But it's useless to me."
There's no question that the atrophied hand muscle is a sign of polio, he says.
That comes as a relief to Lewis. She's 55 now. She remembers that when she was 9, she was so sick for weeks that her mother had to hold her up in bed and on the toilet. But she's had trouble finding a doctor to confirm that early memory. Her mother has since died, and her early health records are gone. "I'd been told all my life I had polio — by my family, my early doctor," she explains. "But as I got older and I had trouble finding doctors that could recognize and confirm that, I started doubting at times. Maybe I had an injury, maybe something else happened to me that I wasn't sure about."
Seeing a doctor who specializes in polio makes the difference. But that raises a question, says Joan Headley of Post-Polio Health International: "Who's going to replace these early champions and these early physicians?"
It was a member of her polio survivors' group that gets credit for first sounding the alarm about post-polio syndrome. In 1979, a man from Arizona wrote in the group's newsletter that, as he aged, he was having more difficulty with weak muscles and extreme fatigue. Other members wrote in to say they'd noticed the same thing. In 1982, Halstead was the first doctor to listen to the group's members, survey them, present his findings and then, with a handful of other polio doctors, spread knowledge about post-polio syndrome.
Last month, several hundred of Headley's members gathered at Warm Springs, Ga., the town whose warm mineral springs President Franklin D. Roosevelt and others with polio visited. At the recent meeting, a big topic of conversation was who would replace the generation of polio specialists like Halstead. Headley says many polio survivors say they still have difficulty finding doctors who understand polio. But there's also optimism that rehabilitation specialists — and even many family doctors — now have the expertise to treat them.
Headley says that's in no small part because of Halstead. "Dr. Halstead has certainly been the champion of the post-polio community over the last 30 some years," she says. And because Halstead spread the word about post-polio syndrome — with his research, writing, speeches and personal communication with doctors and survivors — there's reason to think, she says, that "most physicians now know about the late effects of polio and post-polio syndrome."
Halstead would like to retire. He's got a wife and teenage son, and he's got lots of interests: He travels to Italy a couple of times a year, in part because of his love of all things Italian, but also to help polio survivors there create the kinds of support groups and clinics found in the United States. And Halstead also plays music. He had been a trombone player before contracting polio, but stopped after his illness. (Although, while in the hospital, he taught himself to play piano with one hand.) But recently, he's taken up another brass instrument, the euphonium, with a special left-handed instrument made for him.
But before he can retire, he's hoping his hospital can find and hire a young doctor — one he could mentor to take over his practice.