New York City — Brian Jeansonne talks to the world about his journey with ALS through TikTok videos, which the 46-year-old makes with his family and caregivers.
He began recording them when he was still able to speak on his own.
“I’m married for almost 18 years, have five kids,” Jeansonne said in one such video.
“But nothing that has been taken away makes me as sad as losing my ability to speak,” he said in another.
However, with the help of artificial intelligence, Jeansonne has been able to keep his ability to speak through a process called voice preservation.
“Imagine having no way to communicate your wants or needs or your love,” Jeansonne told CBS News. “Voice preservation gives that back to us. This, in many ways, saved my life.”
CBS News first covered the technology of voice preservation in 2016. At the time, ALS patients at Boston Children’s Hospital recorded their voices to play back when they lost their ability to speak. Since then, the technology has only improved, thanks to AI.
“It’s allowing people to have to record fewer messages,” said John Costello, director of the Augmentative Communication Program at Boston Children’s Hospital. “The quality is far superior to what we were able to do in the early days.”
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing patients to lose their ability to move and speak. An average of 5,000 people in the U.S. are diagnosed with ALS each year, according to the Centers for Disease Control and Prevention.
Jeansonne and his wife, Kristy, spoke to CBS News through Zoom, which allowed Brian to receive some of the questions in advance, since he has to type out his responses in real time.
The camera on his device tracks his eye movements, allowing them to function like a cursor.
“I am amazed by it,” Jeansonne said of the technology. “That fact that I can sound kind of like me is a true gift to me and my family.”
“To me, he’s there,” Kristy Jeansonne added. “His voice is there. It’s just totally life changing.”
Voice preservation can cost more than $1,000, but there are nonprofits that can help pay for it.
On their 20th anniversary, Brian used the technology to repeat his wedding vows to Kristy, continuing to communicate his love for her and for life.