By Brenda Goodman, MA
WebMD Health News
Reviewed by Brunilda Nazario, MD
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.
The Chilling Challenge
As for the ice bucket challenge, Jerome says he knows it's a fad, and that all fads eventually fall out of favor. But for now, the disease that's killing him, the one that has no known cause or cure, has been brought to the country's attention like never before.
According to the ALS Association, the organization that's been the beneficiary of all those ice bucket challenge donations, they've received almost $80 million so far -- 32 times as much as they'd raised over the same time frame last year. That money has come from 1.7 million new donors.
"It's had a spotlight, so everybody knows about it now," Jerome says.
And though he knows people will eventually tire of all the hype, he's doing his part to keep the scheme going.
While most people who do the challenge go on to dare up to three more to do the same, Jerome challenged 15 others.
"It's really about bringing awareness and money, and not really the bucket, you know what I mean?" he says.
Other people with ALS agree.
'We Want This Money Spent on Research'
Ted Harada, age 42, from McDonough, GA, was patient No. 11 in the same stem cell trial Jerome participated in.
His results were so good that they've baffled his doctors. Before the trial, Harada was experiencing the steady decline in strength and muscle control that's typical of the disease.
But after receiving infusions of neural stem cells in his spine, he was able to get rid of his cane and walk on his own. The grip strength in his hands doubled.
Now, months after the surgeries, he says he's not cured, but his deterioration has greatly slowed.
"It used to be every month they could measure new weakness. Now it's every 4 or 5 months," he says.
No other people in the trial had such dramatic results. Researchers have repeatedly cautioned other patients not to make too much of Harada's case.
But Harada wants the world to know that his results were real and measurable -- the result of expensive, cutting-edge science.
He would like the same opportunity to be available to others, and he hopes the ice bucket challenge can help with that.
"ALS hasn't been in the public psyche this much since 75 years ago when Lou Gehrig announced he was retiring because he was dying from ALS," Harada says.
"Now we just have to be smart as a community and make the mandate clear that we want this money spent on research," he says.
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