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Message Banking Technology Helps ALS Patients Regain Their Voice

Julia and service dog Sophie
Message banking can help people with ALS get their personalized voice back.

People with ALS and other degenerative diseases may lose their ability to speak over time, but today’s technology can give them a voice. Most of the speech technology we see has a robotic voice. What if ALS patients could get their own, personalized voice back? Thanks to message banking, they can.

Message Banking is Created

“25 years ago, one of the nurses who ran our tracheotomy program came to us and said there are kids who wake up in the ICU after surgery who are absolutely terrified and they can’t communicate,” John Costello, the creator of message banking and Director of Boston Children’s Hospital’s Augmentative Communication Program, said. “We then began to look and say, why are we waiting until a patient is at bedside and under the influence of medication, pain, sedation and fear to try to help? I thought it would be really cool if kids could record their voices pre-operatively so that post-op they could wake up with technology mounted on their bed and have their own voice.”

Thus, message banking was born.

Another option similar to message banking is voice banking. Voice banking tries to create a voice that sounds like the individual’s voice mixed with a computer. However, message banking records one’s voice before and includes phrases that are unique to an individual.

ALS Patients Use Message Banking

Several years ago, John was approached by a pathologist at an ALS clinic who realized ALS patients would benefit from the technology. The ALS clinic realized they could send patients earlier in the diagnosis stage to record more before speech abilities were lost.

One of those patients is 41-year-old Todd Quinn. Diagnosed in 2011, Todd is still able to emit funny one-liners like ‘Morning, babe’. The program has great promise for many others like Todd. Thanks to $4 million in donations, Boston Children’s Hospital is creating a program to help ALS patients get access to message banking.

To record the messages, patients like Todd get a microphone and a voice recorder. Over time, they speak into it whenever they think of words and phrases they will want to use in the future. The messages are stored and patients use eye-tracking technology to activate them when their speech is gone.

One ALS patient recorded herself singing very badly because she was known for annoying her friends with her singing. Another recorded his favorite way to greet his wife, ‘What’s cookin’ good lookin?’ These are messages that woudn’t be on a traditional communication device but truly show the individual’s personality.

Todd wishes he had saved more messages but he is happy for the ones he banked.

“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.”

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Editor’s note: Approximately 30,000 people in the U.S. are currently living with amyotrophic lateral sclerosis (ALS), a disease that progressively affects nerve cells in the brain and spinal cord. Eventually, ALS robs people of the ability to move and speak.