ATLANTA — Three years ago, John Driskell Hopkins was on stage with Zac Brown Band when he noticed he wasn't able to strum his banjo as quickly as he had before. He couldn't jump around the stage the way he used to. He was having balance issues.
At first he chalked it up to advancing age. He was approaching 50. But shifts in diet and exercise didn't help.
Over two years, multiple neurologists were befuddled. But one doctor finally pinpointed his problem three days before Christmas last year: amyotrophic lateral sclerosis, or ALS, a progressive neurodegenerative disease that attacks the nerve cells in the brain and spinal cord and has no cure. It is also known as Lou Gehrig's disease, referencing the legendary New York Yankees player.
Hopkins and his wife Jennifer were naturally shocked by the bad news. They both cried every day for weeks on end knowing he faced a possible future in a wheelchair with no ability to speak or move beyond his eyes.
At first, they thought about keeping the news private for as long as possible to protect their three young daughters. The disease was not progressing quickly.
But they also knew Hopkins had a potential to make a difference for the estimated 5,000 Americans a year who get diagnosed. He has been part of one of the most popular bands in the country since 2005 playing multiple instruments, as well as a songwriter and backup vocalist.
With dozens of catchy, melodic earworms such as "Chicken Fried," "Toes" and "Sweet Annie," the band is now regularly touring arenas and stadiums.
"I have a responsibility to get out there and spread the word," said Hopkins, who goes by "Hop" to his friends, while sitting in his beautifully spacious recording studio in his Marietta home's attic. "I have a platform."
So he gathered his buddies in the band around him and made a public announcement last month on YouTube. He also simultaneously announced a new charity Hop on a Cure to disseminate money to try to alleviate and/or reverse the effects of ALS.
He said the new organization, which just received its 501(c)(3) nonprofit status, has already raised more than $100,000. He is also planning an annual concert fundraiser in Atlanta, perhaps as early as this fall.
Jennifer, who has been married to Hopkins for 14 years but has known him since their college days at Florida State University, calls her husband a "fixer. He wants to find a cure. We're still working out the details of this charity."
One person who has been a great help to Hopkins is Steve Gleason, the former New Orleans Saints player who was diagnosed with ALS in 2011. Gleason is still alive but has been immobilized for eight years. Gleason communicates using his eyeballs and special technology. They text regularly after the Hopkins met Gleason and his wife Michel at an annual fundraising gala for Gleason's charity Team Gleason in March before Hopkins went public.
"They've become part of our extended family," Jennifer said.
Hopkins said Zac Brown Band has been an incredible experience. "Nobody can plan to have this much success," he said. "We have been very blessed. And I thought I'd have at least another 10, 15 years of active touring before cruising into the sunset. Now I don't know what the future holds."
At the same time, he is planning for a future where his lovely voice could be silenced. He is going to record as much original music this summer as possible. He has been recording his speaking voice in a voice bank so when he can no longer speak normally, he can still do so via technology.
He recently brought in his best friend Mike Rizzi, the drummer in Hopkins' solo band, to help him bank more vocals. "The things we banked were so foul and so funny and so crass," Hopkins said. "Just hysterically stupid stuff. I didn't realize how much I needed that. I laughed harder than I had in months."
Rizzi said he loves Hopkins' humility and will do anything to support his friend: "He never shows any indication he's bigger than anybody else. He will help anybody else at the drop of a hat. I know if the roles were reversed, he'd do the same for me."
Hopkins can still play his instruments. He can still sing. He is able to perform full concerts with the band. He vapes saline throughout the day to keep his voice hydrated. He sleeps more. He does yoga to keep his muscles limber. He takes plenty of pills to mitigate the symptoms. He is now on a gluten-free vegan diet.
"It's very slow progressing but I am noticing more speech issues," he said. "It doesn't affect me mentally. It's all muscular."
He is a little sad his rapping skills have deteriorated, noting that his favorite go-to karaoke song has been Sir-Mix-A-Lot's "Baby Got Back." He grimaced a bit while posing for pictures for this article because his legs stiffened up. And while walking down to the control room, he gingerly held the handrail.
His best coping mechanism right now is staying busy but, he admitted, "I can't go a second of any day not thinking about it. It's there every moment playing in my mind."
Jennifer said Hopkins tends to work too hard. At the same time, "I feel like my role right now is making sure John is eating okay and does the right things to stay healthy. He has an incredibly positive attitude. He blows me away. On days I worry too much, he makes me laugh."
And his bandmates, while shaken by the news when he told them all via Zoom earlier in the year, have done all they can to lift him up.
"He has more fortitude than anyone I've ever met," said Coy Bowles, guitarist for the band. "His headspace is just mesmerizing."
At the same time, Bowles added, "I know he's incredibly frustrated by all of this, but he also knows that too much of that isn't going to help so he's doing an amazing job at balancing all the changes, emotions, and still move forward."
For Hopkins, each day is now a gift to be cherished, whether he's organizing a karaoke birthday party for his twin daughters or joking around with his bandmates on the bus. He is planning more quality time with his family, whether it's at Lake Oconee, a beach or the local pool.
"I have a new understanding how fleeting life is," he said. "Even if I'm not looking at a terminal end to this, there is a lot to be managed with the loss of movement. I'm trying to stay active for my girls and my own longevity."
