John Driskell Hopkins says that two neurologists missed his ALS before a third gave him a diagnosis
John Driskell Hopkins was diagnosed with ALS in 2021 after two neurologists failed to figure out what was causing his symptoms.
John Driskell Hopkins is a founding member of the Zac Brown Band, and while he still dedicates time to performing with the country group, he's also dedicated to raising awareness and funds for ALS.
The musician was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2021. In addition to sharing updates about his condition, Hopkins shared with Fox News Digital that he had seen different neurologists before the disease was finally discovered.
"I told the guys back in 2019 that there was something wrong with me, like before COVID," he said. "My bluegrass hand was … this hand was still doing great and this hand was slowing down. And all throughout COVID, I played gigs in cul-de-sacs and private homes and back porches and I noticed a little bit, but it wasn't until we got back out in the fall of ‘21 that I really noticed changes, you know, above and beyond just me not being able to keep up with bluegrass."
ZAC BROWN BAND'S JOHN DRISKELL HOPKINS FIGHTS ALS DIAGNOSIS: ‘CRYING SUCKS’
John Driskell Hopkins first began noticing symptoms of ALS in 2019, though he wasn't diagnosed until 2021. (Courtesy of Hop On A Cure)
He continued, "It was more like, I was laughing on stage, and my legs were locking up, you know, that kind of thing … when you have this emotional reaction your body will tense up, and other things."
Hopkins said that one theory was that cholesterol drugs he'd begun taking had caused these symptoms. Another was that he had "some sort of head injury," but that didn't necessarily make sense to him, because although he remembered having "knocked [his] head around a little bit" in the past, it was never hard enough to cause that sort of damage.
"It wasn't until two neurologists missed it that we landed on the third, and got the diagnosis," he shared.
WATCH: JOHN DRISKELL HOPKINS SAYS THAT TWO NEUROLOGISTS MISSED HIS ALS BEFORE A THIRD GAVE HIM DIAGNOSIS
"Honest to God, I'm just grateful to be sitting here talking to you two years later, almost two and a half years later, and not be in a wheelchair," he admitted.
The musician does struggle with certain things. His voice is affected by the disease, as is his balance. He isn't able to move his fingers as quickly as he used to, but for the most part, his ALS is progressing "very slowly and very evenly."
John Driskell Hopkins is experiencing issues with his voice and hands, but says his disease is progressing "very slowly." (Courtesy of Hop On A Cure)
When asked how he was feeling, Hopkins jokingly exclaimed, "Crap!" He then elaborated that "it's difficult to approach every day jovial and excited. You have to continue to work on keeping a positive attitude and not let the demons creep in."
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The day he spoke with Fox News Digital, he was feeling "pretty good," and he'd been singing, although his singing voice is also affected by ALS.
WATCH: JOHN DRISKELL HOPKINS SHARES THE IMPORTANCE OF KEEPING A POSITIVE ATTITUDE
"I'm on tour this year with Zac Brown Band. We had rehearsals last month, and no one complained. So, I'm out there," he laughed. "The minute everyone's like, ‘Uh, dude, you need to kinda hold it back,' I will step away, but, you know, I'm so incredibly good-looking, they have to have me on stage."
John Driskell Hopkins, center, is a founding member of the Zac Brown Band. (Courtesy of Hop On A Cure)
In May 2022, six months after he received the diagnosis, Hopkins launched Hop On A Cure, a nonprofit foundation dedicated to researching ALS – as he told Fox News Digital, "The answer is in the research, and we want to fix it."
"Hop On A Cure is a dream that we have to fund research and, selfishly, to save me. But also, on a grander scale, to provide the research funding needed to combat all motor neurone disease, not just whatever is called specifically ALS, but also Parkinson's, Alzheimer's, dementia. There are so many motor neurone diseases under this umbrella that need research and funding and need to be fixed."
WATCH: JOHN DRISKELL HOPKINS EXPLAINS WHY HE CREATED HOP ON A CURE
Hopkins declared that his goal with Hop on a Cure is simply "to cure ALS."
"We're going to fix it, you know?" he continued. "Not single-handedly. ALS is not incurable. It is underfunded. And, you know, the cure to ALS could very well be communication. We have lots of people that respond really well to Western treatments and lots that respond really well to Eastern treatments, and it's all their brand of motor neurone disease that is being combated. And, you know, there are certainly dozens of different reasons why we have to travel down this path. And we have to figure it out and fix it. And communication is probably the key."
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The performer has been married to wife Jennifer for nearly 16 years, and they share three young daughters. Talking to them about his diagnosis was one of the "trickiest parts" about navigating everything, he said.
John Driskell Hopkins and wife Jennifer have three daughters together. (Courtesy of Hop On A Cure)
"We talked about what could be, you know, and they had questions. ‘Could you die?’ ‘Yes.’ ‘Could you be in a wheelchair?’ ‘Yes.’"
He added, "ALS is 100% fatal. We all get there differently. And I've known people that have had ALS for 11 months, and then they're gone. And I know a woman that's had it for 20 years. So, you just don't know the cards you're dealt. And we expressed that to them, that we don't know the future. And I feel pretty good right now, and we're not gonna, you know, predict bad things. We're going to strive for good things."
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He explained the situation to his daughters after he made plans to start Hop On A Cure, but before he announced the foundation publicly. After explaining the foundation to them, they got "excited about helping people."
"They're incredible little ladies," he said. "And they have daddy's back."
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