Stem Cells for ALS: Inside a Clinical Trial
ALS Patient Volunteers for Stem Cell Transplants Into Spinal Cord
A Deadly Disease continued...
"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.
Stem Cells for ALS
Jerome lives in Auburn, Ala., but has been making the two-hour drive to Glass' ALS clinic at Emory in Atlanta every six months since 2003.
The day before his surgery, he's been put through a full day of tests: muscle function tests, mental tests, blood tests, heart and lung tests, the works.
"It was in March of 2011 when they approached me about doing this clinical trial. I said yeah, I'll do it," Jerome recalls. "I mean, why not?"
There are plenty of reasons why Jerome might not want to participate. Even patients who know they are dying have a lot to lose. Precious months of life can be lost. Efforts to slow disease can backfire, making patients much worse much faster. And when surgery is involved -- particularly surgery not just on the spine but on the spinal cord itself -- there's a very real risk of death.
Why would Jerome risk everything he and his family still had? The magic words "stem cell."