They’re masters of cutting-edge technology. They can send an email with a look, or play a video game using only their brain. They navigate incredible challenges every day with hope and resilience.
Sound like Superman or Batman? Think again.
They’re Arizonans living with amyotrophic lateral sclerosis — ALS, also known as Lou Gehrig’s disease — and they’re showing just what kinds of superpowers are achievable thanks to technological advancement and determination.
ALS superpowers
On June 9, the Arizona Diamondbacks celebrated the fifth annual Lou Gehrig Day with a resounding win against the Seattle Mariners. In my opinion, those home runs were nothing compared to the wonders of the pre-game presentation honoring people living with ALS.
In a moment both groundbreaking and breathtaking, Bradford Smith read Gehrig’s famous “Luckiest Man” speech — the baseball legend’s farewell address to the Yankees on July 4, 1939 — using brand-new technology that connected his brain directly to a computer. As Smith’s family gathered around him, Gehrig’s words echoed across the stadium in an AI-augmented recreation of Smith’s own voice.
The technology is Elon Musk’s cutting-edge Neuralink, and it is already breaking incredible boundaries. Smith was only the third person in the world to receive the brain implant and the first person with ALS to receive it. It’s given him powers that look remarkably super as he uses the neural connection to communicate and connect with his loved ones (including even playing Mario Kart with his kids).
Gehrig was himself something of a living superhero: tall and strong, ruggedly handsome, with the humility and gratitude of a saint. His time on the diamond was larger than life. So it’s not surprising to see people with ALS today following in his inspirational legacy: From using high-tech devices that allow them to navigate computers through eye-tracking software, to the new Neuralink implant, people with ALS are showing the “super” power of the human spirit.
For ALS patients, communication is essential
Researcher Janice Light, who studies communication technologies for people with complex needs, calls communication “the essence of human life.” For people living with ALS, research agrees: Being able to communicate is essential for maintaining social connection and self-expression, both vital predictors of increased quality of life. New technologies are helping ALS patients communicate even in the most challenging stages of disease progression.
That communication has boundless benefits: It strengthens bonds with their caregivers, family and friends. It offers increased self-efficacy and independence, and the chance to explore and engage in learning and play. Neuralink gave Smith the opportunity to do something he hadn’t in years: maintain his ability to communicate outside, with the sun on his face.
Living with ALS
This year’s theme for ALS Arizona’s Walk ALS events across the state (with Scottsdale coming up on Saturday, Nov. 8, at Salt River Fields) is superheroes: the family and friends who step up to care for their loved ones facing a devastating diagnosis; the fundraisers who give their time and energy so generously to fund research, programs and services; and every Arizonan living with ALS who show their heroism with every breath, step and smile.
Because there’s another way communication can impact quality of life: how we talk about the challenges we face. That’s why we uplift and support Arizonans living with ALS, not dying from it. Free events encourage patients to embrace what’s possible, from water tubing to fishing, and golfing to horseback-riding.
And if you’ve ever seen someone with ALS fly down a snowy mountain on adaptive skis, you’ll swear you’ve seen a superhero.
Editor’s note: Arizona State University Cronkite School Ph.D. student Amanda Kehrberg is a volunteer with Phoenix-based ALS Arizona. Please submit comments at yourvalley.net/letters or email them to AzOpinions@iniusa.org. We are committed to publishing a wide variety of reader opinions, as long as they meet our Civility Guidelines.
