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Finding Harmony: Mikey Stone's Journey with ALS

Sep 23, 2025, 08:13 by Maggie Schmidt (Admin)

Music drew Mikey Stone in from childhood. He began piano at nine, motivated by sibling rivalry, and by eleven was writing his own songs. Growing up in a small West Texas town, late-night music videos fueled his imagination." "I saw how freeing it was. I was like, I want to do that," Mikey recalls about watching artists like Adam Lambert and Lady Gaga.

By his early twenties, Mikey’s dream was a reality. After studying audio engineering, he spent 4 years in Austin’s music scene, producing tracks and working late nights. In 2022, seeking new opportunities, he moved to Colorado aiming to make his mark in Denver.

Though things seemed to be going well, and his career was on the right trajectory, it was while working 12-hour doubles at a Colorado Springs restaurant that Mikey first noticed something was wrong. "I just noticed that my left foot just felt off, and I didn't really know how to explain it at first, but it was kind of like a tightness," he remembers of those initial symptoms in September 2022. "I just thought I was burned out. I thought that maybe I was on my feet too much." When the tightness spread up his left calf and he consulted his general practitioner, she agreed with his assessment. "She agreed it could be burnout and suggested I cut back on my hours," Mikey recalls. Neither knew they were looking at the early signs of Amyotrophic Lateral Sclerosis (ALS).

The path to diagnosis was anything but straightforward. A seemingly unrelated hospitalization for a rare intestinal condition called intussusception uncovered Mikey's abnormal reflexes during a physical exam. "My leg shot up off the table and almost kicked him in the face," Mikey remembers, laughing. "He was like—no, that's definitely not normal." And although extensive genetic testing revealed a mutation in Mikey's SLC1A2 gene, which has been linked to neurological conditions including ALS, he was still left without a diagnosis.

Over time, the tightness spread, creeping up his left calf and eventually affecting both legs. Then, twitching began, and it became difficult to walk. “I noticed my legs just felt heavy, like I was walking through the shallow end of a pool or like wearing ankle weights. Then, my toes and left hand started to curl inward.” These new symptoms made it more challenging for Mikey to do what he loves most – create music.

In February 2025, Mikey’s physician referred him to an ALS specialist and ordered an EMG test. Instead of ruling out ALS, the visit confirmed the diagnosis that changed his life. "It was weird. I don't think I had the average response,” Mikey says of receiving his diagnosis. After years of medical uncertainty, he felt "weirdly relieved" to finally have answers, though he acknowledges the complex emotions that followed. "I was relieved in that sense. I didn't have to keep going to all these doctors. But then it opened up a whole other can of worms."

Despite initial vulnerability, Mikey began sharing his journey through social media and his podcast, Mikey’s House, finding solidarity and support. His search to understand what was happening to his body evolved into a platform that reaches thousands of people daily, offering an opportunity to share his music and educate others about ALS.

"ALS progresses differently for everybody. Some people progress faster than others," Mikey explains, noting the many questions he gets regarding his mobility. "I'm in my wheelchair about 50% of the time... I can still walk. I just get tired very easily now." Mikey’s left hand is now weaker, impacting his ability to play piano and guitar. While slower and less proficient, he continues making music—the work he loves. Therapy has helped Mikey navigate these changes and move from denial to acceptance, adopting 'radical acceptance'—focusing on what he can control in response to ALS.

Part of his response includes his online presence, which has evolved from sharing his personal life to advocacy work. “It’s the chain of awareness,” says Mikey of his efforts. “Awareness leads to funding. Funding leads to research. Research can lead to a better understanding of the disease, which leads to clinical trials, better treatments, and then hopefully one day, a cure,” says Mikey. “Research is really the backbone of all of the advancements and support that we get as people living with neuromuscular diseases,” he adds.

To help drive the “chain of awareness,” Mikey uses his platform to educate others and address common misconceptions around ALS. "Each question asked is just another opportunity to be able to explain to someone and to educate," Mikey says about the queries he receives. His visibility has created what he calls "a community and a safe space for people to share what they're going through."

Despite the challenges, Mikey's fundamental goals remain unchanged. "I've always wanted to connect with people and help people feel things. I always thought that was going to be through my music. I’m still doing it… It's just in a different way." Mikey is working on new music, including an album planned for early 2026, and recently collaborated with Frankie Torres on 'Losing to the Letters,' using music to connect and raise awareness. His parting message to others is one of authenticity and hope, “Feel your feelings, and don’t push them away. You’re not alone—many share similar experiences and want to connect. Reach out for support; there are more resources now than ever before.”

Support the future of neuromuscular medicine for patients like Mikey by getting involved with the American Neuromuscular Foundation.

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