NeuroTalk Support Groups - Telethon features OC man who "talks" by thinking his words

Telethon features OC man who "talks" by thinking his words
Augie Nieto, who's raised more for ALS research than anyone, will demonstrate a new "Audeo" collar on Jerry Lewis's telethon.

By TOM BERG
The Orange County Register

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KISS FOR LUCK:Lynne Nieto gives her husband Augie a kiss as they prepare to leave for Las Vegas where he will appear on the Jerry Lewis Telethon this coming Labor Day weekend. Nieto was diagnosed with ALS (Lou Gehrig's disease) three years ago. Since then, he's raised more money for research than anyone else ever has.

LEONARD ORTIZ, THE ORANGE COUNTY
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CORONA DEL MAR - Sure, it was an awkward moment.

Augie Nieto held a $2.7 million check in his hand. First time on the annual muscular dystrophy telethon. Forty million viewers. Jerry Lewis standing on stage as he has every Labor Day since 1966.

But as Nieto tried to hand over the check, in 2006, he just … couldn't … do … it.

Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS) had already robbed his muscles of vitality. He couldn't lift his arm.

"I asked for a drum roll," Nieto, 50, says, chuckling at the memory.

That gave him time to rock his immobile arm like a pendulum until it eventually reached Lewis's grasp.

Such is life with Lou Gehrig's disease – it slowly paralyzes every muscle in your body, usually taking your life in three to five years.

Nieto, 50, of Corona Del Mar, no longer can walk, stand or eat (meals are fed through a stomach tube) and it's near impossible to understand what he says, requiring a family member to translate.

So when he returns to the telethon stage this weekend – for his third year – he'll showcase a device right out of science fiction: an "Audeo" collar that detects what your larynx is trying to say and digitally speaks the words.

"With this collar, he will speak without moving his mouth," says his wife Lynne who will join him on stage Monday for a video montage, interview and chat with Lewis.

In three years, Nieto has raised some $16 million for ALS research – more than anyone in history. He's done so by applying the same business saavy he used to turn an unwanted exercise bike into LifeCycle and an eventual $550 million business.

In 2006, he walked onto the telethon stage three times to deliver $5.9 million worth of checks to Lewis. In 2007, he rode his wheelchair onto the stage three times to hand over $6 million worth of checks and deliver his "Top 10" list of why it's good to have ALS. (#7: "I never have to pay for a meal because I can't reach for my wallet.")

This year he will wheel onto the stage three more times, with his family and new "Audeo" collar to translate his words. Stay tuned. Nieto, who's already outlived many people with ALS, promises to share more laughs with Lewis.

His scheduled TV appearances:

•Sunday, between 10:10 and11 p.m. – a 2-minute check presentation.

•Monday, between 10:10 and11 a.m. – a 2-minute check presentation.

•Monday, between 11:20 a.m. and 12:10 p.m., – a 5-10-minute video montage and chat.

"I love to be on stage," Nieto says, through a translator. "I love to live."

Contact the writer: 714-796-6979 ortberg@ocregister.com

http://www.ocregister.com/articles/n...87-three-lewis