For ALS patients robbed of speech, a new way of ‘speaking’
Todd Quinn was a builder, a hiker, a mountain biker, a snowboarder. He was married to the love of his life. They had a new baby. The couple couldn’t wait to show him the world.
Then, in 2011, came the diagnosis of ALS. The disease has robbed Quinn, 41, of his ability to walk, to pick up his son, to feed himself.
Yet Quinn’s voice — the one he used to utter witty one-liners at the dinner table, to tell his wife and son he loves them — lives. When he directs his eyes at a computer screen mounted on his wheelchair, a speaker emits phrases in his own voice, recorded when his speech was clear, the tone uniquely his.
Sometimes it’s just “Morning, babe” or “Did you have a good day?” But it always brings a smile to his wife’s face. “I get that piece of Todd back again,” Catherine Quinn says.
The Quinns credit a first-of-its-kind program at Boston Children’s Hospital for such moments. The program can “bank” words and phrases of ALS patients, allowing them to communicate with friends and family when their voices fail.
Yet the number of ALS patients who need this help has outstripped the effort’s capacity, said John M. Costello, director of the augmentative communication program.
That’s about to change. Bolstered by nearly $4 million in donations from philanthropists and organizations, the hospital is creating a formal program to give more ALS patients access to the “message banking” technology.
Children’s will hire staff to serve nearly 300 new ALS patients a year, four times as many as they serve now. They also plan to train people at hospitals across the country to use the technology.
Costello and his team started banking messages years ago for the hospital’s primary patients, children. The technique was used to help boys and girls who would temporarily lose the ability to speak because of breathing tubes, major surgery, or other medical issues.
As Costello’s reputation for helping patients communicate grew, Massachusetts General Hospital started referring ALS patients to his program in 2008. Costello quickly saw the value in banking messages for them.
ALS, or amyotrophic lateral sclerosis, sometimes called Lou Gehrig’s disease, is a progressive neurodegenerative disease that kills the nerve cells controlling muscle movement. It is fatal, claiming its victims, on average, two to five years after diagnosis.
Message banking helps ALS patients preserve a part of themselves that the disease is likely to take away. About 80 to 90 percent of ALS patients develop a speech impairment, according to the ALS Association, an advocacy group based in Washington.
“Our voice is our acoustic fingerprint,” Costello said. “It is the way we represent ourselves, from your warmth to your snarkiness to your sarcasm — every part of you.”
The technology is not complicated. Costello gives patients a microphone attached to a $100 voice recorder. Patients keep the recorder with them (it fits in the palm of a hand) and speak into it whenever they think of words and phrases they will want to say for months and years to come. The messages are saved in a computer, and when the disease has left them unable to move their limbs and speak clearly, patients can use eye-tracking technology to activate the messages.
One man, Costello said, recorded a simple “uh huh” in a tone that made his daughters giggle; they immediately recognized their father’s way of saying, “I don’t agree with anything you said, but I’m not going to interfere.”
Another woman recorded herself singing — very badly. She was known for “torturing” her friends with her rendition of Joni Mitchell, and she was determined to do so long after she lost her ability to speak.
One of the first messages ALS patient Jay Fishman recorded was his standard greeting to his wife of 39 years: “What’s cookin,’ good lookin’?”
Fishman is the former chief executive of Travelers Cos. of New York, one of the largest property and casualty insurers in the country. He stepped down as CEO on Dec. 1 because of his illness but remains executive chairman of the board.
He visited Costello at Children’s Hospital in March and immediately decided to bank his own messages. He and his wife, Randy, also decided they wanted to help more patients do the same.
The couple gave Children’s $1.5 million to help expand the program.
Fishman, 63, uses a scooter to get around now. His voice is strong and clear, but he knows it may not always be that way. Patients with ALS can feel helpless — there’s no way to stop the disease — but recording messages is a way to stay engaged, as opposed to just letting the disease take its course, Fishman said.
“It gives patients a sense of hope,” he said, “that they can do something for themselves.”
Patients — even those who save thousands of words and phrases — still don’t have enough to carry on every conversation in their own voices. They must also use a computer function that speaks in a generic robotic voice.
At home in New Jersey, Todd Quinn wishes that he had saved more messages. But he is grateful for the ones he has, happy he can still call his 4-year-old son, Sawyer, and start conversations with friends and siblings in the voice that used to be his.
He can still speak, but his words are slurred and indecipherable to all but his wife, Catherine. As his condition worsens, even she may not be able to understand him. He will be able to communicate only through the computer.
That will make the messages he has saved all the more precious.
“It’s very easy to lose sight of the person that I used to be,” Todd Quinn said, “but with the message banking, it allows us to hold on to that.”