In the three and a half years sinceJohn Driskell Hopkinswas diagnosedwith ALS, his voice has slowed a beat and he struggles with balance, often using a walking stick to navigate airports and snaking backstage hallways. But, he says with an optimistic lilt, "compared to a lot of people, I'm doing great." He wiggles his fingers on a video call from a dressing room in Cincinnati, where theZac Brown Bandwill play that night, to show "they still work." Hopkins, 54, has long circled among guitar, bass, banjo and ukulele in the group, which has adapted to any changes he's needed to make to keep his vocal or guitar parts. "I'm hoping to be out there as long as I can. Sometimes I feel like (performing) gives me more inspiration to keep going," he says. Though Hopkins' form of amyotrophic lateral sclerosis – also known as Lou Gehrig's disease – is progressing slowly as itattacks his upper motor neuronsthat primarily affect the brain, he is accepting of a diagnosis with a lifespan that doesn't often extend past five years. "Something could happen tomorrow and I could be paralyzed," he says. "But typically if you get to five years after diagnosis, they may say this ispresenting more like PLS(primary lateral sclerosis). But it's a non-starter in the conversation because nothing has changed. It just means a lower progression rate, which I can be grateful for." The day ofHopkins' diagnosisin December 2021 was devastating. He and Jennifer,his wife of 17 years, had plans to take their daughters Sarah Grace and twins Lily Faith and Margaret Hope, now 16 and 13, toCallaway Gardensin their Atlanta hometown to see the annual holiday lights display. After agonizing over the decision, the couple decided to "make the best of it" with their girls. But that night, Hopkins couldn't sleep, haunted by the cruel reality of his diagnosis. "I kept wondering what I could possibly say to my kids about this. You want to try to come up with this fatherly advice," he says. "They're kids. They haven't been to college or gotten married. All of these things you expect a parent to help with and be there for, it was looking like I might not be there for it." The one thought Hopkins couldn't shake was, "I love you forever," which he's turned into a song with the same title after working on it for months after his diagnosis with Zac Brown Band comrade Clay Cook. "It's tricky to think of things that haven't happened yet and try to get ahead of them because you're told your experience is going to be cut short," he says. The poignant piano ballad, which Hopkins released in May forALS Awareness Month, is a valentine to his loved ones as he speak-sings lyrics such as "I don't know how long this body will hold me/but my hope for you is you will grow old/we will be together in the ever after." The closing verse is especially heart-rending, as Hopkins uses his storyteller approach to quietly offer, "You girls and your mother/you have one another to hold and lean on/always know that." Hopkins is trying to stay busy both with music – the Zac Brown Bandhas a few dates through Juneand he continues towork on his own music, including another Christmas album – and helping others with ALS. Three years ago,he and Jenniferstarted theHop on a Cure foundationto support research to prevent and seek a cure for ALS, while also raising awareness about the disease. Hopkins moves his hands to show the regularities of his life these days – "music, family, foundation. Music, family foundation" – and says he is as involved as possible with the daily undertakings of the organization. "In the three years we've been a foundation, we've granted over $4 million in research projects. That's no small feat but nowhere close enough to what we need," he says. "We have to fund as many research projects as possible because we don't know which one is going to hit. We're learning a lot, but there is still no cure or treatment that will stop it." Despite the grim truths of his condition, Hopkins is approaching life as "slower, but business as usual." He took his daughters and "a busload of girls" toOlivia RodrigoandBillie Eilishconcerts last year in Atlanta and met up with his bandmates to catch Tool and Pearl Jam. Normalcy is a challenge, but it's become almost a self mandate. "I do need to get more rest," Hopkins admits. "But I don't want to miss out on anything." This article originally appeared on USA TODAY:Zac Brown Band member pens song for daughters after ALS diagnosis
