Roughly 30,000 people in the U.S. currently live with amyotrophic lateral sclerosis (ALS), a fatal disease in which the motor nerve cells of the brain and spinal cord (which signal muscles to contract) slowly but progressively degenerate. Eventually, ALS robs people of the ability to move and speak.
But they can still have a voice.
“We can’t change someone’s medical diagnosis,” says John Costello, MA, CCC-SLP, director of Boston Children’s Augmentative Communication Program (ACP) at Boston Children’s Hospital. “But we can support people to maintain dignity, control and social connectedness while expressing their true selves and remaining active members of the world around them.”
Costello has been working at night and on weekends with adult ALS patients, helping them “bank” words and phrases before losing speech. Their high-fidelity digital recordings, in their own voice, are loaded into assistive devices to be played at will.
Capturing what you say — and how you say it
The recordings include both practical phrases (“please put a pillow under my leg”) and phrases with special meaning for family and friends — helping them stay connected as ALS progresses.
“If you could not speak and you want to say to someone, ‘I’m thirsty,’ a computer-generated synthetic voice is fine,” says Costello. “If, however, you want to tell your child, ‘I’m so proud of you,’ you want it to come from you in your own voice. There are things that you say and do — or the way you say or do things — that are so characteristic of you. That’s what we try to capture.”
That includes things like “Get out of my face,” “I love you” or “You annoy me.”
Message banking is different from voice banking, which seeks to create a synthetic voice based on a person’s recording of up to 2,000 nonsense phrases into a computer. While the technology is still evolving, “to date, it’s very clearly a computer voice with pieces of one’s biological voice,” says Costello.
The Augmentative Communication Program has received a $1.5 million gift to further its work with adults with ALS, from The Travelers Companies CEO Jay Fishman and his wife, Randy. (Fishman recently announced that he has been diagnosed with ALS and that he is stepping down as CEO because of his health.) With a long list of other donors, nearly $4 million has been pledged.
“This program will give newly diagnosed patients control over one particularly frightening outcome of the disease and will provide them with the ability to do something for themselves and their families,” said Fishman. “My family and I are so moved by John’s passion and dedication to this.”
A voice for children in the ICU
Costello started message banking 25 years ago when a nurse came to him and said, “You know, there are kids who wake up in the ICU after surgery who are absolutely terrified, and they can’t communicate.”
Costello agreed to see some ICU patients, thinking it would be a one-off. “It very quickly became evident to me that for someone going through such emotion and pain and fear, the inability to speak at that moment just compounds it further,” he says. “I thought it would be really cool if kids could record their voices pre-operatively so that post-op they could wake up at bedside with technology mounted on their bed and have their own voice.”
That was the start of an ICU service that remains one-of-a-kind and is still internationally recognized.
“I had no idea that it was going to be as powerful as it was,” says Costello. “Families were moved to a point where they would say, ‘My child is critically ill, he looks ill, he doesn’t look like my child at all and yet I hear his voice saying, “Daddy hold my hand.” Hearing his voice completely brings me back to knowing this is my child and feeling connected.’ Medical staff said, ‘We see kids intubated in the ICU and we never get to know them, but when we hear a little girl say, “This isn’t fair!” in her voice, we get a sense of who she is.’”
Learn more in this Q&A with Costello.