'Voice Banking' Allows Terminally Ill to Preserve their Unique Identities

May 08, 2017 11:02 AM

After Lorrie Burton of Woodbury was diagnosed with Amyotrophic Lateral Sclerosis is November, she said she made the decision not to allow ALS to define her.

"It took us months and we cried. And then we said, 'OK, this is our life,'" Burton said. "I just decided I'm going to be me. And I'll do what I can."

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Burton is one of thousands of Minnesotans living with a neurodegenerative disease. Often, one of the most devastating effects of the diseases for families is the loss of the ability to speak.

Burton is now one of a handful of people who are taking advantage of new technology being put to use at the University of Minnesota called voice banking. It will allow her to preserve her voice in a way never before possible and allow her to continue speaking with a computer-generated version of her own voice.

With the help of Rebecca Lulai, a speech-language pathologist, Burton spends about 10 hours in a soundproof room recording more than 1,600 carefully selected phrases. A computer will use new technology developed at the University of Delaware to take those recordings and synthesize a human-like voice that sounds like Burton.

"It's synthesized. It's not completely natural, but it very much sounds like that person's voice," Lulai said.

Unlike previous technology where users could only speak with a generic computer generated voice, or rely on pre-record phrases in their actual voices, this breakthrough creates a text-to-speech program that will allow people like Lorrie to speak using a life-like, computer-generated version of their own voices.

"So it can be used to say virtually anything you want to say in the future. There's no limit to what you can say," Lulai said. "It's really good, almost magic."

It's a bittersweet breakthrough that also requires the acknowledgement of the seriousness of a neurodegenerative disease diagnosis. ALS slowly removes a person's muscle control until death.

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"And someone like Lorrie who knows the road ahead and what's in store for her, to be able to go through this for her family and loved ones it's very inspiring," Mike Stephenson with the Minnesota, North Dakota and South Dakota chapter of the ALS Association said.

So far, 24 Minnesotans have completed the voice banking process. Stephenson says his group is offering to cover the cost for others who want to participate. The recordings can be done at several locations across the state or possibly at home.

"For the most part the people who have come through have said this has helped us feel like we are doing something about it and giving something back to our families," Lulai said.

"Truly I think it's a blessing not just to me, but to my whole family and to those I love and care about," Burton said.

For more information about voice banking, contact the ALS Association at 612-672-0484.

Credits

Matt Belanger

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