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Brain & Nervous System Health Center

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Stem Cells for ALS: Inside a Clinical Trial

ALS Patient Volunteers for Stem Cell Transplants Into Spinal Cord

A Deadly Disease continued...

Amyotrophic lateral sclerosis (ALS) is the disease that struck down baseball great Lou Gehrig and now bears his name. It's better understood as motor neuron disease , because these are the cells that waste away or die. They stop sending messages to the muscles. Eventually, the muscles that control breathing no longer work.

Neurologist Jonathan Glass now has treated about 2,000 ALS patients. He's writing a paper on what he's learned from the first 1,200 who died. He recently told a 45-year-old man with two teenage kids that he was going to die. For Glass, this was not an unusual day.

"I have been doing this a long time. I still have to tell patients every day, 'I can't cure your disease,'" Glass says. "They come to you and say, 'Doc, what can I do about this?' And I say, 'We are trying. We are trying.' But we don't have a clue what causes this disease. Not a clue."

ALS is always fatal, usually within three to five years. About a quarter of patients survive longer than five years. John Jerome got his ALS diagnosis more than nine years ago. He can still walk, with the help of leg braces and a walker. He can still talk, albeit with difficulty. He can still breathe.

"I have really outlived most people with ALS, so I am grateful," Jerome says. "After some crying, Donna and I got ourselves together and told the family. It was a hard thing to do but we made it through. ... We have come together as a family and learned to adapt. We are doing great."

That kind of attitude makes ALS patients "the best patients in the world," Glass says. "These are big boys and girls. If you know what they've got, you tell them. But the next thing you tell them is, 'I am going to take care of you.' They need to know you care. They want you to listen to them, and to know that no matter what happens you will be there to help them. And if you can't, don't lie to them."

Glass asks all of his ALS patients to donate their brains to science so that researchers can one day find out exactly what it was that caused their disease, and their deaths. In Jerome's case, he asked one thing more.

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