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Brain & Nervous System Health Center

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ALS Patients Hope Ice Bucket Challenge Flows On

WebMD Health News

Aug. 25, 2014 -- John Jerome has never been so happy to be so cold.

The day he joined hordes of other Americans and got a bucket of ice water dumped on his head for charity, his hometown of Auburn, AL, was sweltering under temperatures in the high 90s. So the frosty soak felt pretty good, he says.

It also just felt good to be alive.

“I really thought I’d be dead by now,” says Jerome, who is 52.

Eleven years ago, a doctor diagnosed him with amyotrophic lateral sclerosis (ALS). The average life expectancy for someone with ALS -- also called Lou Gehrig’s disease after the famous baseball player who succumbed to the disorder -- is 2 to 5 years after diagnosis.

Jerome has defied the odds.

He can still talk, though his speech is halting and effortful. He can still walk. The disease hasn’t yet robbed him of his muscle control.

“It means that I’ve been able to see my children grow up and be a part of their lives,” he says. His 18-year-old son is studying at the Air Force Academy. His 22-year-old daughter is in graduate school, he says proudly.

He’s been there for all the big moments -- the proms, the graduations, the acceptance letters.

“It is a blessing,” he says.

Taking a Risk

Doctors aren’t entirely sure how he’s lived this long with what is typically a very aggressive disease. It could be that he’s simply got a form that’s slow progressing.

According to the ALS Association, 1 in 10 people with ALS will survive more than a decade after diagnosis. 1 in 20 will live for 2 decades.

Jerome credits at least some of his longevity to a clinical trial. He was one of the first people to undergo a risky and difficult procedure that injected stem cells directly into his spinal cord.

The goal of that first study, which enrolled just 15 people, was simply to prove that the procedure could be done safely.

Jerome believes the stem cells helped, at least for a time.

“My breathing got better and my speech got better for a while,” he says. People around him even noticed that his speech was easier.

Two years after his procedure, though, he says any improvements seem to have worn off. He thinks he’s slightly worse off than he was before going into the study. But he has no regrets.

“It’s been worth it,” he says.

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