Suddenly Paralyzed, 2 Men Struggle To Recover From Guillain-Barre

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MARY LOUISE KELLY, HOST:

Today in Your Health, Guillain-Barre syndrome. It's a disease triggered by bacteria and viruses, and it can lead to paralysis. NPR's Rae Ellen Bichell reports on what it's like to ride out Guillain-Barre.

RAE ELLEN BICHELL, BYLINE: For Tim Goliver and Luther Glenn, the illness started in the same way, probably just a regular stomach bug. They recovered. But then both men got sluggish. Tim was 21 and a college student at the University of Michigan.

TIM GOLIVER: I was a literature geek. I was really looking forward to my senior year and wherever life would take me.

BICHELL: But Tim got so tired that it felt like running a race to lift a spoon of soup to his mouth. Luther was in his 50s, an Army veteran working in security in Washington, D.C. He'd recently separated from his wife and had just moved into a new house. He and his two daughters were trying to unpack.

LUTHER GLENN: Here we are trying to unpack, and I'm flat out dead tired.

BICHELL: Tim and Luther got so clumsy and weak that their families brought them to the emergency room in wheelchairs. And that's where they got the same diagnosis.

GLENN: Guillain-Barre syndrome.

GOLIVER: Guillain-Barre syndrome.

BICHELL: Usually the trigger is something like the flu or a bacterial infection that you can sometimes find in undercooked chicken. In super-rare cases, people can develop Guillain-Barre after getting a vaccine. Zika is another possible trigger. The way it works is a person gets sick with a fever and diarrhea or the pukes. Their immune system launches an attack against the thing that's making them sick and succeeds. But it doesn't realize the battle is over.

GOLIVER: And for whatever reason, your body starts to attack the myelin that's on your nerves.

BICHELL: It starts breaking down the insulation around the nerves. That is not good because like the insulation around an electrical wire, if the nerve coating gets damaged, the messages traveling from the central nervous system to the rest of the body can get lost.

GOLIVER: My body didn't just stop working. It felt like it was under attack. Moving the softest cloth over my leg would make it feel like I was having steel wool pushed into my skin.

BICHELL: No matter what the cause, a diagnosis of Guillain-barre syndrome, or GBS, usually means you're about to go through something really traumatic. You can expect to lose almost everything that makes you you.

GOLIVER: I was watching TV, and then I lost use of the right side of my face.

BICHELL: The muscles just sagged. Within a week, the muscle that used to lift Tim's lungs for each breath also went lax. So nurses stuck a breathing tube down his throat. Later, he'd have to go on a ventilator again, through a tube that went straight to his windpipe through a hole in his neck.

GOLIVER: You feel like your body is a bellows. And you feel like you're being pumped and fanned again and again and again.

BICHELL: Tim had lost control over his mouth and throat muscles. He couldn't talk anymore. He could blink, and to some extent nod, but that was about it.

GOLIVER: And I just would watch the same episode of "SportsCenter" again and again on replay and feel like I was in a loop and things were totally out of control.

BICHELL: Most of the time, Tim lay paralyzed and silent, eating through a tube in his side. Luther lost almost everything too. But he was able to breathe and talk the whole time.

GLENN: I remember my sister saying that GBS took everything else away, but it didn't take his mouth away.

BICHELL: During his years in the military, Luther had routinely aced the physical fitness tests. He'd trained about 2,000 new soldiers and sent them off on their military careers.

GLENN: The military gave me the idea that I could do just about anything. So when I was in the hospital, I looked at this illness as just another mission that I had to accomplish.

BICHELL: But Guillain-Barre syndrome made him so weak that he couldn't even blink. When he fell asleep, his eyes would just roll back in his head. For his birthday, the nurses pureed a cake for him to slurp.

GLENN: It was horrible, but I loved it. Just the taste of it was just oh, my goodness.

BICHELL: A little after that, he saw himself in a mirror for the first time in weeks.

GLENN: I was floored that that was me, this thin, gaunt guy. That wasn't me. That was hard to look at. That was probably more shocking to me than anything.

BICHELL: For a while, things did not look good. But Luther kept a sense of humor about it, even when his little sister would play a joke on him over and over again.

GLENN: Oh, yeah, she would come in and take my hand and drop it on my face.

BICHELL: He was slapping himself. And he couldn't do anything about it.

GLENN: She and I both got a big kick out of it.

BICHELL: But one day, he resisted ever so slightly. Then a muscle in his leg twitched. A few days later, he blinked. Gradually, he was able to return to the house with his two daughters. But he had to live in the basement because he couldn't get up the stairs. He didn't think he'd be there very long.

GLENN: Days started running into weeks. Weeks started running into months.

BICHELL: Six months, in fact. Luther was unlucky. He's in the 20 percent of GBS patients who never quite recover. For the most part, he's independent. He lives in his own apartment. He goes out to movies and dinner with his family. He's even learning Spanish. But he still hasn't recovered his mobility. And just moving his face enough to talk can feel like a muscular feat.

GLENN: One of the things I hate the most is that I lost my ability to smile. That's difficult for me to do. It looks almost like a grimace.

BICHELL: It's been six years since he first got sick, and Luther can barely manage a step. He gets around in an electric wheelchair.

GLENN: I realize this just might be my flight. So I take a smile with me and let's go. Make the best of it.

BICHELL: Luther may never fully recover. But Tim is lucky. He's in the majority, the 80 percent of Guillain-Barre patients who recover almost fully. He quickly regained his ability to talk and move. He finished his degree. And 10 years later he even proposed to his wife at the top of a mountain.

GOLIVER: I don't see anything that it's keeping me from doing.

BICHELL: It's unclear why some people recover so much more than others. Sometimes it has to do with age or medical care or how much nerve damage happened - or even the kind of bacteria or virus that caused it in the first place. But if Zika does begin spreading through the U.S. as predicted, there may be more cases of Guillain-Barre syndrome. And even a slight increase could be bad, not just for the people who get it, but also due to the strain it puts on intensive care units.

GOLIVER: I cost over a million dollars. And that is something that I've never, ever forgotten.

BICHELL: Now, Tim and Luther didn't get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it's that no matter what the cause, the disease is one wild ride. Rae Ellen Bichell, NPR News.

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