RENEE MONTAGNE, host:
It's MORNING EDITION from NPR News. Good morning. I'm Renee Montagne.
Today in Your Health, another virus that created enormous fear for years and to this day - polio. It's true, there hasn't been a case of polio in the U.S. from the live virus in decades, but there are about a half million Americans who contracted polio when they were young. Some are still paralyzed, most of them aren't, and you'd never know they had polio from looking at them. Still, all of them face the threat that polio can return as they get older. NPR's Joseph Shapiro reports.
JOSEPH SHAPIRO: There are only a handful of doctors left in this country who specialize in polio. Dr. Lauro Halstead is one of them.
Dr. LAURO HALSTEAD (National Rehabilitation Hospital): Do you know, did the patient come over from PT?
SHAPIRO: Halstead is a tall lanky man in a white lab coat with a black stethoscope slung around his neck. At the National Rehabilitation Hospital in Washington, D.C. he comes down the hallway on an electric scooter.
Nurses and administrators vie for his attention and there's a patient waiting.
Dr. HALSTEAD: So finally, finally.
Ms. EDITH GERVER (Polio survivor): Yes, please.
Dr. HALSTEAD: We're just a little bit behind.
SHAPIRO: Edith Gerver's 83. She sits in the exam room with a bamboo cane at her side.
Ms. GERVER: Ok, Dr. Halstead, I'll tell you. I am here because, as you would expect, my muscles are getting weaker and weaker.
SHAPIRO: Halstead speaks with authority. Twenty-five years ago he published early evidence of a startling medical problem: post-polio syndrome. People who'd had polio as children were reporting a new weakening of their muscles as they got older. Halstead understands his post-polio patients not just as a scientist. He's a polio survivor, too.
Dr. HALSTEAD: I mean, I'm having a lot of the same issues that she is. In my legs, so I can walk shorter and shorter distances. I continue to use a motorized scooter for longer distances, more than 20, 30, 50 feet. I take afternoon naps. They help get me through my afternoon fatigue.
SHAPIRO: Halstead is 73 now. He sees patients only two days every other week. He can't retire. The number of aging patients who want to see him, like Edith Gerver, is growing.
Ms. GERVER: We're survivors, you and I, right?
Dr. HALSTEAD: Yeah.
SHAPIRO: And every polio survivor's got their own polio story. Halstead was 18, a college student touring Europe, when he got sick. He boarded an overnight train to Madrid. When he got there his arms were too weak to fetch the suitcase over his head. He ended up in a darkened children's hospital with high frescoed ceilings. He scrunched his 6 foot 4 frame into a breathing machine - an iron lung built for a child and made of wood not metal.
Dr. HALSTEAD: Franco was in power. And to conserve electricity throughout Madrid, the whole city went dark from 2:00 AM to 6:00 AM So I'm in this iron lung - or wooden lung - and it's going…
(Soundbite of inhaling and exhaling)
…which is the noise an iron lung makes as it pumps air in and out. So at 2:00 AM the lung stops and I'm lying there. Fortunately, I could just breathe enough to get me through 'til the 6:00 AM. I did hallucinate a fair amount. And then at 6:00 the lung kicked in.
SHAPIRO: Over several months Halstead recovered, except for the right arm he could never fully use again. He went back to college and then med school. He played soccer and tennis. He didn't think of himself as being disabled.
Edith Gerver was a baby when she got sick in Germany. She was 11 when her family fled for the United States.
Ms. GERVER: One step ahead of Hitler. Coming to the United States I could not get a visa 'cause I'd had polio. They took us off the ship with a little tug boat and took us to Ellis Island. There was a hearing. And at the time, Roosevelt had polio. But, you know, he hid it. But fortunately they allowed me in.
SHAPIRO: Two uncles already in this country signed papers guaranteeing she'd never become a ward of the state. Gerver's led a good and prosperous life in America. Now her daughter is moving to Florida and she's thinking of going with her, but lately she's started falling down. She's come to Halstead for 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.
Ms. GERVER: …feel it on…
Dr. HALSTEAD: And I'm going to give you some resistance. Up. Up, hurry, hurry, hurry. That's hard. This one.
SHAPIRO: Halstead uses his arms to press against her feet to test her strength.
Dr. HALSTEAD: Up, high as you can go.
Ms. GERVER: That's it.
Dr. HALSTEAD: Ok.
SHAPIRO: Then Halstead tries to persuade Gerver 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. People with polio worked hard to overcome their illness, so it goes against their nature — when post-polio syndrome kicks in — to slow down.
Dr. HALSTEAD: So you may think, you think that maybe that's like giving in?
Ms. GERVER: I feel that as long as I can stand on my two legs, I'm ahead of the game. I know that doesn't make much sense.
Dr. HALSTEAD: No, it doesn't.
Ms. GERVER: But it's who I am. And I think polio made me that way.
Dr. HALSTEAD: Ok, I will accept that.
SHAPIRO: But Halstead doesn't give up. He keeps pushing her gently over the hour long appointment. By the end, she agrees to let him call the orthotist. She'll try one more time to wear a leg brace.
There is another patient today Julie Lewis who says polio probably made her the hard charging person she is today. She's got an important job at a hospital and she is reluctant to take Halstead's advice that she start taking a nap at the office. For one thing, until now at least she 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.
Dr. HALSTEAD: Yeah, I mean looking at this hand there is no question.
Ms. JULIE LEWIS (Polio patient): You mean polio wise? Oh, okay. Everybody else but you that looks at it, goes wow, what's that? You know?
(Soundbite of laughter)
Ms. LEWIS: What did you have?
SHAPIRO: This is a relief to Lewis. She's 55 now. She remembers being nine and so sick that for weeks her mother had to hold her up in bed, but she couldn't find a doctor to confirm that early memory.
Ms. LEWIS: Well I've been told all my life I've had polio — by my family, my early doctor. 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.
SHAPIRO: Lewis waited six months for this appointment. Post polio patients come from all over the country and the world to see Dr. Halstead. And that raises a question.
Ms. JOAN HEADLEY (Executive Director, Post-Polio Health International): Our concern as an organization, is, you know, who's going to replace these early champions and these early physicians?
SHAPIRO: Joan Headley runs a polio survivors group called Post-polio Health International. In the early 1980s, Halstead was the first doctor to survey the groups members, and then with a handful of other polio doctors, spread knowledge about the extreme fatigue of post-polio syndrome. Headly sees some reason for optimism that now other doctors not just polio specialists can give good care.
Ms. HEADLEY: I mean Dr. Halstead has certainly been the champion of the post polio community over the last 30 some years. Because of his work, most physicians now know about late effects of polio and post-polio syndrome.
SHAPIRO: Back at the clinic, Halstead agrees there is the new generation of doctors who can take over.
Dr. HALSTEAD: There is quite a number of younger physicians and other health care providers who have gotten interest in this population because there is one of them and they present challenging and interesting issues.
SHAPIRO: Halstead is hopeful that his hospital might be close to finding one of those young doctors who he can then mentor to take over his polio practice.
Joseph Shapiro, NPR News.
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