Patient With ALS Makes Music Using Only His Eyes
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In 2018, Jordan Weston of Ypsilanti, Michigan, noticed a twitch in his left arm. The arm would tire faster during workouts, and eventually Weston was diagnosed with amyotrophic lateral sclerosis (ALS) later that year.
What is amyotrophic lateral sclerosis?
ALS – sometimes referred to as Lou Gehrig’s disease – is a progressive condition of the nervous system that causes loss of muscle control. Typically presenting as muscle twitches at first, the disease eventually affects the muscles required to move, speak, eat and breath. There is no cure for ALS, which affects an estimated 10 in 10,000 Americans.
Prior to his diagnosis, Weston was a budding musician, spending many years in his childhood watching his cousin playing a black-and-blue Yamaha keyboard. “He started teaching me how to add instruments together to make a song,” says Weston, who is 32. “After that, I pretty much took it from there.” He would create songs and eventually wrote his own music program, called FL Studio. Weston’s music spanned many different genres, including jazz, trap and emo.
It became harder to make music
After the ALS diagnosis came, Weston says he felt “sad, confused and scared”. “I just had a blank mind for a while knowing I would lose my ability to move. It got harder and harder to make music as I lost the ability to use my hands,” he explains.
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Using QuadStick, a hands-free controller that is powered by blowing air into a tube, Weston could continue his musical journey – until he required a tracheostomy, where a tube is inserted into the windpipe to aid breathing.
Weston now uses an eye gaze device, which enables him to control music software and build songs using eye movements. Some of his musical work is posted to YouTube.
Video taken from Jordan Weston's YouTube channel.
"The ingenuity of people living with ALS always amazes me,” says Dr. Stephen Goutman, an assistant professor in the Department of Neurology and director of the ALS Center of Excellence at Michigan Medicine. “Even in the face of this difficult illness, individuals with ALS redefine what it means to live and find quality in very personal ways. Jordan’s love of music provides a channel for his creativity and imagination. It also teaches us to appreciate our abilities and to be creative. There are so many ways technology can be applied to improve the quality of life for our patients.”
Weston says he has been supported through his diagnosis and illness, but stresses that others may experience the difficulties of ALS with fewer resources. “Some people may just look at the name and think nothing of it,” Weston said. “People don't realize how it feels to have your own body take away your ability to move and do the stuff you used to. A lot of people take for granted what they can do,” he says.
This article is a rework of a press release issued by the University of Michigan. Material has been edited for length and content.