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Technology helps ALS patients preserve their voice

KBAK/KBFX photo

Every day, 15 Americans are diagnosed with amyotrophic lateral sclerosis, better known as ALS. It affects the nerves and muscles.

Loss of strength is often followed by paralysis and eventually loss of speech. ALS affects dozens of people in Kern County.

There is a high-tech solution helping ALS patients keep their voice. It's called voice banking, using a program called Model Talker. Voice banking is a long process that has patients record more than a thousand phrases. It allows people who use a speech generating device to communicate with a unique personal synthetic voice that becomes their own.

"Losing my voice is something that is hard to grip mentally, but knowing I would be able to use my own voice to say, 'I love you,' to my family members and my wife is really important to me," said Daryl Thiesen, who was diagnosed with the disease a year ago.

Thiesen's voice means just as much to his wife as it does to him.

"That's going to mean the world, him telling me good night or him telling me he loves me," said Connie Thiesen.

Also in the ALS support group is Charlie Wren. Until three years ago, he was a musician and a mechanic.

He now uses his computer, called Tobii Dynavox, to talk. It recognizes what letters he is looking at, allowing him to type and speak. But it isn't his voice, it's a robotic one. He wishes he did voice banking.

"It was a big mistake not doing so," he said. "Everyone misses my voice, cause your voice is part of your identity."

Wren and his wife, Angelina, have been married for nine years. She said even though it's not her husband speaking, he still has the right words to say.

"I love you," Charlie Wren interjected.

ALS Association, Golden West Chapter serves Kern County. It has a support group at Health South the second Saturday of every month.

If you would like to find out more information, you can call Robin Eller at (661) 364-1913.

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