Fitness entrepreneur battles Lou Gehrig's disease, but not just for himself
By JAN NORMAN
MCT

Chas Metivier/MCT


Augie Nieto, who is coping with Lou Gerhig's disease, shares a laugh during a video conference with Bryan Andrus, Corona del Mar, California.


Santa Ana, Calif. --It is a cloudless July morning, and Augie Nieto can see sunbathers filling the sand below his four-story house built into the cliffs of Corona del Mar, Calif.

He woke up excited, as he says he does every morning. Life is as beautiful as the Pacific Ocean view from his bedroom balcony.

Nieto, 49, who built a fitness equipment empire, cannot use his arms. He needs help to stand and to walk. He speaks with a measured cadence, each word carefully enunciated in order to be understood.

Augie Nieto has amyotrophic lateral sclerosis, more commonly called Lou Gehrig's disease, which is progressively destroying the nerve connections between his brain and muscles. His mind and senses are unaffected.

He smiles at the view. "Wow!" he says with slow, exaggerated clarity.

Nieto is best known for his entrepreneurial history, turning his chubby teen years into Life Fitness Inc., one of the world's largest fitness equipment makers, which he sold for $310 million in 1997. The Ernst & Young accounting firm twice has honored his entrepreneurial successes, most recently with the presentation of an extraordinary "Spirit of Leadership Award" in June.

When Nieto was diagnosed with ALS in March 2005, he moved from denial through anger and self-pity to acceptance. It seemed an eternity to his wife, Lynne, but it took about two months. When life expectancy is three to five years, prolonged depression is an unaffordable luxury.

With acceptance came determination to move beyond a life of success into a life of significance.

"I don't mourn what I can't do; I celebrate what I can do," he said, lounging at his kitchen table, his bare foot gently stroking his yellow Labrador, Hazel. "I redefine normal every day."

Nieto and his wife are busier now than before the diagnosis. They have established Augie's Quest to raise money to find treatment and a cure for ALS, partnering with the Muscular Dystrophy Association to minimize overhead costs and leverage an existing nationwide fundraising machine. One of the funding beneficiaries is a new ALS research center at UCI Medical Center in Orange, Calif.

The Nietos travel about half the time for fundraising and public speaking, "because I won't be able to travel as easily in the future," Nieto explained.

He is chairman of Octane Fitness, an adviser to North Castle Partners and is on the boards of several companies. He just finished, with Tom Pearson, the book "Augie's Quest," which will be published in October. All proceeds will go to his organization.

--And he spends as much time as possible with his four grown children.

For years, Nieto was a model of physical fitness. Now he is an encouraging model of living with physical limitations.

"Most important, I can give others hope," he said.

He knows he will lose all ability to move and even to breathe. He is already practicing with ventilators and feeding tubes so he will be comfortable with them when the time comes.

A ventilator can extend life, yet 90 percent of ALS patients choose not to go on breathing equipment, Nieto said, because they cannot communicate and lose the will to live.

"Let me show you what I'm doing so I can continue to communicate," he said, turning with his feet to the computer behind him.

Wirelessly, he called his friend Bryan Andrus in San Diego. They each have webcams so they can see each other as they talk.

"I can talk to anyone around the world with this," Nieto said.

On a separate flat-screen monitor, letters and colored boxes began to scroll up. Nieto moved the computer mouse with his feet. As he selected letters and phrases, they moved to the left until whole sentences appear.

"I can type 45 words a minute after just two months" of practice, he said.

Then his assistant placed a quarter-inch-square, wireless mouse on the bridge of his glasses, and Nieto continued "typing."

"I-can-do-this-almost-as-fast-as-with-my-feet," he said as the sentence formed on the monitor.

"When I can no longer move my head, I have a retina scanner that will pick up eye movement, and when I can no longer move my eyes, I can have a chip in my brain where I can move the cursor like you saw," he continued.

He has a wheelchair with three gyroscopes for stability that enables it to climb stairs and to raise him to 6 feet in the air so he can talk with people face to face.

Nieto shares these discoveries with others. "I receive validation from people all over the world, like the husband whose wife has ALS and he e-mailed me, `I owe you my life,' " Nieto said. "Wow!"

Nieto gives public speeches to raise awareness and money for Augie's Quest. He knows the effect he has on his audiences, such as those attending June's Entrepreneur of the Year banquet in Irvine, where Ernst & Young honored Nieto and gave him $10,000 for Augie's Quest.

They couldn't lift him onto the stage, so he spoke from his table, his image projected onto two giant screens. He was allotted a couple of minutes to speak after a video showed him and his quest.

The event organizers "had no idea what would happen, but I knew," Nieto said. "My message was simple: You have a gift of being entrepreneurs. What a pity it would be if you only use it for business. Why not use that skill with your community, with your family?"

All 688 successful entrepreneurs, their families and colleagues stood and applauded for several minutes. Many wiped away tears.

Then Nieto said, "Wow!"

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At a glance:

Augie's Quest

714-550-0161

www.augiesquest.org

Nonprofit entity raises money to research causes of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) and find a cure; has raised $10.3 million in 21 months; goal is $18 million).

Funding has helped establish the ALS Neuromuscular Center at UCI Medical Center in Orange.

http://www.sunherald.com/381/story/103510.html