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Woman With ALS Using New Techonology to Record Voice

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Every day for the past two months Carole Shearn has been recording her voice, before its gone.

In October she was diagnosed ALS, also known as Lou Gehrig's disease.

"They said, "Carole unfortunately there is not a cure for ALS so that was the hardest thing to hear. We can all become paralyzed because our muscles and nerves breakdown," she said.

The 70-year-old former teacher has the type of ALS (bulbar onset) that starts by weakening throat muscles . She was more than willing to be the University of Miami's first patient to use voice banking.

"It's my life line that's the only way to say it . When I lose my voice technology will allow me to communicate" said Shearn.

Her voice is downloaded into Tobie an assistive device that she'll be able control with her eyes when all her other muscles fail.

She has recorded some of her favorite phrases including "What's up Buttercup".

"As she does progress and she does permanently lose her voice we can still here what she sounds like and enjoy that," said her daughter Jennifer Wagner.

Voice banking provides a substitute to the generic or synthetic voices typically prerecorded into these types of devices.

"With a Bluetooth on her phone she'll get a cell phone call through here she can answer it on the device, respond on the device by using the different phrases and the messages that are in there," said Jocelynn Odlum, speech pathologist at the University of Miami.

Voice banking can also be helpful for patients with other types of degenerative diseases including parkinson's, multiple sclerosis and head and neck cancer.

Shearn wants others learn more about the disease that she's living with - als. Her daughter has created a Facebook page called Carole's Crusade.
 


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