In the summer of 2022, we lost my mother to ALS. She was diagnosed only a few weeks prior to her death, but, in hindsight, it was clear she was exhibiting symptoms at least a year earlier. She lost weight (she blamed the pandemic’s infringing on her nights out to dinner), was holding her forearm in a strange manner (from how she carried her purse, she claimed), and, finally, in January 2022, tripped and fell on the sidewalk, suffering a head injury that led us on a vain attempt to treat a post-concussive disorder that was actually something far worse.
The whole ordeal was brutal, for our mother of course, but also for our family, who watched her, quite rapidly, lose the ability to walk, speak, and even see. ALS is an unforgiving, dehumanizing disease, and the fallout it caused in my own life has left me quietly committed to raising awareness however I can.
Which is why I so desperately wanted to spend time with John Driskell Hopkins, a founding member of the Zac Brown Band, who was diagnosed with amyotrophic lateral sclerosis — or Lou Gehrig’s disease — just a few days before Christmas in 2021. This December, he’ll mark his third year of living with ALS.
“My doctor told me that the average life expectancy after diagnosis is two to five years,” says Hopkins, sipping coffee in the windowed lobby of a Nashville hotel one morning in August while throngs of tourists pass by outside. “We thought that by now, I would either be on a vent or in a chair or…you know. But honestly, I’m not that much different than I was when they told me that.”
In fact, the day after our chat, “Hop,” as he’s known to his friends, would step onstage at Nashville’s Nissan Stadium to perform for nearly 60,000 fans with the Zac Brown Band. The multi-instrumentalist, most often seen with a guitar or banjo slung across his chest, may not bound about the stage like he once did, and he’s slowly started to slur some of his words (“Without bourbon,” he laughs), but the 53-year-old is still performing and still touring.
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Most importantly, he’s still alive.
Hopkins is convinced that there is a cure for ALS and he’s determined to help doctors and researchers find it with Hop On A Cure, the charity he founded with his wife, Jen, in May 2022.
“I really want people to understand what the issue is, so I keep explaining: Motor neurons in the brain are retracting from the muscle, causing us to not be able to function. Eventually breathing and swallowing and motion are gone. That’s how it gets you,” he says. “But people need to know that ALS is not incurable; it is underfunded.”
In two years, Hop On A Cure has awarded nearly $3 million in funding. Hopkins and his organization have raised money through donation drives, auctions, galas (like a sold-out one in Atlanta this Saturday), and with a whole lot of music. It also encourages people to host their own fundraisers in solidarity. The mission of the charity is to aggressively increase not just awareness of ALS but financially support the research needed to stop it in its tracks.
“So many great organizations focus on providing care tools, or wheelchairs, or beds, or things that people need to be comfortable and to survive, and that’s incredibly important,” he says. “But we believe that at the root, we just need to fix it, and then we won’t need any of that.”
Hopkins admits he’s a bit more fortunate than some diagnosed with ALS: So far, his disease has been slow in its progression. It’s why he’s still able to perform and record with Zac Brown Band, who will release the new EP No Wake Zone on Sept. 20. (Shortly before our interview, Hopkins was in the studio with the band recording a cover of Lucinda Williams’ “I Lost It” for the EP.) He sees the disparity between himself and those living with ALS in wheelchairs and on ventilators, like former NFL player Steve Gleason, as proof that there needs to be more well-funded studies.
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“I’ve met people who were diagnosed after me, and they’re already gone. What makes my disease different than Steve Gleason, who was in a chair within two years and has been communicating with his eyes for 10 years? We don’t have the answers,” he sighs.
Hopkins first suspected something was wrong in the middle of 2019, when he had difficulty performing a bluegrass strum known as “double-time” on his guitar. He saw two neurologists, but neither suspected ALS. Ultimately, it was Hopkins’ primary care physician who sent him to a third neurologist to specifically test for the disease.
“That was bad news. My wife was very upset. She was on the phone when I got the news and I didn’t know what [the doctor] was talking about, but she did,” Hopkins says. “I was like, ‘The ice bucket thing we did back in the day?’”
Since then, he’s immersed himself in learning what sets ALS into motion — the exact cause remains mostly unknown — and what he can do to slow its progress. He travels to Boston from his home in Atlanta about twice a year for treatment, but says “there’s not a lot of maintenance” for a disease that still has no cure.
“There are two medications that are approved; I’m on both of them. But all they do is slow progression by as much as 15 to 30 percent, which when you’re talking about two years and then you’re dead, it’s like a month,” Hopkins says.
To supplement his treatment, he’s gone to extremes to reimagine his diet. Hopkins mills his own flour, makes his own nut milk, and steers clear of anything with a label that reads “natural flavor.” “The American diet is trash,” he says. “All of these seed oils and processed sugar and this ridiculous stuff that they put in everything in the U.S. Why are we so stupid? It’s money and greed and lobbyists.”
Onstage with Zac Brown Band, Hopkins remains a force to be reckoned with. He makes a point to stretch a few times and, on rare occasion, will take a seat on a stool during the group’s marathon shows, which can extend to two-and-a-half hours for headlining gigs. But mostly, the guitarist looks forward to his nightly journey to the lip of the stage to spot fans wearing Hop On A Cure T-shirts in blue and white — the ALS colors.
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“There’s a lot of interaction with the crowd when I walk out to my position, and that always feels good,” he says. “Good vibes are good vibes, but we need more research to figure out what it is that makes these cases different and what allows motor neurons to heal. We believe that there is a solution out there — all we have to do is find it.”
Hopkins stops talking to watch a party bus hauling happy tourists through Nashville. “Look at them,” he laughs, “they’re having the time of their lives.”