In the summer In 2022, we lost my mother to ALS. She had been diagnosed a few weeks before her death, but in hindsight, it was clear she had been experiencing symptoms for at least a year. She had lost weight (she blamed the pandemic for her night out to dinner), she had been holding her forearm in a weird way (from the way she carried her purse, she claimed), and finally, in January 2022, she tripped and fell on the sidewalk, sustaining a head injury that sent us into a futile attempt to treat post-concussion disorder that was actually much worse.
The whole ordeal was tough, for our mom of course, but also for our family, who watched her rapidly lose the ability to walk, talk, and even see. ALS is a merciless and unforgiving disease, and the consequences it has had on my life have made me quietly committed to raising awareness in any way I can.
Which is why I was so eager to spend some 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 days before Christmas 2021. In December, he will celebrate three years living with ALS.
“My doctor told me the life expectancy after diagnosis was two to five years,” Hopkins says, sipping coffee in a Nashville hotel lobby on an August morning as crowds of tourists pass by outside. “We thought by then I’d be on a ventilator or in a chair or… but honestly, I’m not much different than I was when they told me that.”
In fact, the day after our chat, “Hope,” as his friends call him, was on stage at Nissan Stadium in Nashville to perform for nearly 60,000 fans with the Zac Brown Band. The multi-instrumentalist, who is often seen with a guitar or banjo strapped to his chest, may not be jumping around the stage as he once did, and he slowly began to slur some of his lyrics (“without “Bourbon,” he laughs, but the 53-year-old is still performing and touring.
Most importantly, he's still alive.
Hopkins believes there is a cure for ALS, and he is determined to help doctors and researchers find it through the Hop On A Cure charity he founded with his wife, Jane, in May 2022.
“I really want people to understand what the problem is, so I go on to explain: Motor neurons in the brain are degenerating from the muscles, making us unable to function. Eventually, the ability to breathe, to swallow, to move is gone. That’s how you get the disease,” he says. “But people need to know that ALS is not an incurable disease; it’s just underfunded.”
In two years, Hop On A Cure has given away nearly $3 million in funding. Hopkins and his organization raise money through fundraisers, auctions, concerts (like the sold-out Atlanta concert last Saturday), and lots of music. The organization also encourages people to host their own fundraisers in solidarity with patients. The charity’s mission is to dramatically increase awareness of ALS, as well as financially support research needed to stop the disease.
“A lot of great organizations focus on providing care tools, or wheelchairs, or beds, or things that people need to feel comfortable and survive, and that’s really important,” he says. “But we think that basically, we just need to fix everything, and then we won’t need any of that.”
Hopkins admits he's luckier than some ALS sufferers: So far, his disease has been slow to progress. That's why he's still able to perform and record with the Zac Brown Band, which is releasing a new EP No wake up area On September 20. (Shortly before our interview, Hopkins was in the studio with the band to record a cover of Lucinda Williams’s “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 evidence that more well-funded studies are needed.
“I’ve met people who were diagnosed after me, and they’ve already passed away. What makes my disease different from Steve Gleason, who was sitting in a chair within two years and making eye contact for 10 years? We don’t have the answers,” he says, sighing.
Hopkins first suspected something was wrong in mid-2019, when he had trouble playing a guitar riff known as “double time.” He went to two neurologists, but neither suspected ALS. Ultimately, it was Hopkins’ primary care physician who sent him to a third neurologist to get a special 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 had happened. [the doctor] “I was talking about it, but she did it,” Hopkins says. “I thought, ‘Was that the ice bucket we did back in the day?’”
Since then, he has been immersed in learning what causes ALS (the exact cause is still largely unknown) and what he can do to slow its progression. 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 approved drugs, and I take both. But all they do is slow the progression of the disease by 15 to 30 percent, which means it takes a whole month when we're talking about two years and then the patient dies.”
To complete his treatment, he has gone to great lengths to reimagine his diet. Hopkins mills his own flour, makes his own nut milk, and avoids anything labeled “naturally flavored.” “The American diet is crap,” he says. “All this vegetable oil and processed sugar and this crappy stuff they put in everything in the United States. Why are we so stupid? It’s money and greed and lobbyists.”
On stage with the Zac Brown Band, Hopkins remains a force to be reckoned with. He makes a point of stretching out a few times, and on rare occasions, he sits on a bench during the group’s marathon shows, which can stretch to two and a half hours for the main set. But mostly, the guitarist looks forward to his nightly trip to the edge of the stage to see fans wearing their blue-and-white Hop On A Cure T-shirts—the colors of ALS.
“There’s a lot of interaction with the public when I go out to work, and that always makes me feel good,” he says. “Positive emotions are positive emotions, but we need more research to find out what makes these conditions different and what allows motor neurons to heal. We think there’s a solution out there – we just have to find it.”
Hopkins pauses to watch the party bus carrying happy tourists through Nashville. “Look at them, they’re having the time of their lives,” he says with a laugh.
