Being able to tell your child "I love you" is something many of us take for granted. But for patients with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig's disease, losing their voice is a reality. Thanks to the work of John Costello and his team at the Boston Children's Hospital ALS Augmentative Communication Program, that reality is changing. The program gives adults with ALS the ability to continue to "speak" in their own voice using an innovation called message banking.
This technology was first developed at Boston Children's to help kids in the pediatric intensive care unit (ICU) communicate with their parents and caregivers after surgery. Costello and his team have adapted it to the unique communication needs of adults with ALS. "It became clear that this powerful, rich model we had developed for kids was a perfect match for people with ALS who are permanently losing the ability to speak," says Costello.
The program has helped ALS patients like Todd Quinn and Stephen Winthrop record words and phrases — using their natural voice, inflection and intonation — before losing their speech. Their recordings are then loaded onto an assistive device to play at will. This unique technology gives patients the power to communicate their humor, tenderness, passion and self to those around them.
"We can't change someone's medical diagnosis," said Costello. "But we can help them maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them."