In a recent video for a leading provider of speech-generating devices, Augie Nieto '80 P'08 says that of all the challenges posed by ALS (amyotrophic lateral sclerosis), the most overwhelming is communication. "When the ability to communicate is lost," he shares, "hope often goes along with it. Not only do you lose your voice, in a sense, you lose your identity."
Nieto, a fitness pioneer, was diagnosed with ALS, also known Lou Gehrig's disease, in 2005, but his ability to communicate continues to amaze and impress, despite resulting losses in his physicality. The latest news? Nieto, now aged 52, has written a bookwith his toes. The book, Reciprocity Incorporated (Infinity Publishing, 2010) features a foreword by Lance Armstrong and is described by the editors as carrying advice for entrepreneurs, including the "abiding example that good citizenship is, in fact, good business."
In an Orange County Register newspaper interview last month, Nieto conveys (by way of his toes, which interact with a computer screen) the concept for the book, and also what inspires him to push forward. (Read full story.) To develop the material for his newest book, he recently traveled the country to interview 30 business leaders, including San Diego Padres leader Jeff Moorad and execs at Starbucks, Safeway, and Panda Express.
That he continues to tackle such projects is a credit to an inner strength that rivals the physical brawn Nieto has always displayed. What's made it possible, he says, is technology that allows him to communicatesomething most with Lou Gehrig's disease lose the ability to do.
"When I was diagnosed with ALS," Nieto has said, "I knew I didn't want that to happen. And when I was starting to find it harder to move my hands, I started to explore software and hardware solutions that might help me stay connected with my friends, family, and business colleagues.
"More than 90 percent of those diagnosed with ALS lose the will to live and elect not to go on a ventilator because they cannot communicate," Nieto has noted. "It's frustrating because although my body doesn't function the way I want it to, my mind is sharper than ever."
With the assistance of cutting-edge technology (including infrared control), Nieto has been able to speak, send e-mail, control his environment (things like the TV and DVD players), surf the Internet, read booksand yes, write them, too. In essence, technology has given him hope.
"I have a new goal," he shares in the Orange County Register interview, "To live the longest with ALS I believe I can live 20 more years."
Watch Augie on Video:
Five for Fighting's John Ondrasik performs his song, "Augie Nieto," on the 2009 Jerry Lewis MDA Telethon:
http://www.youtube.com/watch?v=dJsm31yw4Uo
Augie's appearance on MSNBC's Today Show in 2009:
http://today.msnbc.msn.com/id/26184891/vp/29955316#29955316
Watch Augie's video for DynaVox Mayer-Johnson, a company that develops the software and hardware that has allowed him to communicate: http://www.dynavoxtech.com/success/als/details.aspx?id=56
Celebs including Lance Armstrong, Robin Williams, and Arnold Schwarzenegger among others toast Augie at the IDEA World Fitness Convention in October 2007: http://www.youtube.com/watch?v=Dmd1xvl7Qyg&feature=related
See what he's "favorited;" visit Augie's YouTube Channel: http://www.youtube.com/user/augienieto3601#p/u/7/PdIBBvKDU8Y