John Driskell Hopkins sings and plays guitar for the Zac Brown Band — enjoying center stage this summer while on tour with one of the top groups in country music.
But behind the scenes, Hopkins has been battling ALS. He started noticing difficulties playing guitar back in 2019 and was diagnosed last year, just before Christmas.
Hopkins recalled to CBS News the day he found out the news.
"We were crying three times a day. I was just like, 'I need to figure out what this means,'" he said.
At the time, he didn't even know what ALS was.
Often referred to as Lou Gehrig's Disease, ALS leads to eventual complete loss of muscle function. Patients are trapped inside their own bodies. There is no known cure.
The devastating outcome is why Hopkins' wife Jennifer believes people do not talk about it enough.
The couple has three daughters together, which gives him purpose. But Hopkins worries about what the diagnosis means for his family.
"I worry about what it means to her [Jennifer]. 'Cause I don't wanna ruin her adult life," he said. "This is the most beautiful woman in the world. She could find anyone tomorrow. But I don't wanna burden this one."
Jennifer said he and their girls are her life, and that the couple is "meant to go through this together" — "whatever that brings."
The tough times have inspired the pair to create the charity, Hop On A Cure, which has already raised more than $100,000 for ALS research.
"I'm not a scientist. I'm not gonna be the one with the test tubes and the research. I'm someone who has a platform that can explain, 'I can't play guitar like I used to. I might not be able to sing one day.' And if I have an opportunity to spread the word that way, then that's my responsibility," Hopkins said.
Between shows, Hopkins has been working on voice banking – recording words and sentences to be used for communicating in the future when he can no longer talk or give advice to his daughters.
"I, as a father, don't know what they need yet and want to be there, want to impart some wisdom that I think they can probably use later," Hopkins said.
He's also writing songs — three that are related to what he is going through.
But he doesn't consider his days numbered yet. He is focused on living and being present with his wife and kids, and touring with the band as long as he can.
He is also working on new music and has a new Christmas single scheduled to come out next month.
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