As he approaches his 53rd birthday, Augie Nieto is showing no signs of slowing down, almost six years after he was diagnosed with ALS.
No wonder Augie Nieto is so happy these days. He gets to have beer, wine and medicinal marijuana.
The medicinal marijuana helps Augie sleep at night. As for the beer and wine, that goes through a feeding tube straight into his stomach, but not before a taste test.
“I put great wine in my mouth and then spit it out,” Augie says. “I then put box wine in my belly! It is a concept called selective opulence!”
Six years after he was diagnosed with amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease, Augie’s mind—and his spirit—are still intact.
“I am having a blast!” Augie says, and by “says,” Augie actually is talking through a TypeRight software program created by DynaVox. By moving his socked feet on a ball at the base of his chair, Augie can type up to 40 words a minute, which is faster than some people can type with two able hands. He also has an eye-tracking device to help him communicate, along with an iPhone attached to his wheelchair to give him Internet access.
“I have a transformed life,” Augie says. “Who could ever imagine a life where you could not move your body, can’t eat or drink, breathe on your own, yet I have never been busier and more fulfilled.”
Augie, who founded Life Fitness and introduced the Lifecycle exercise bike to the health club world, remains active as the chairman of Octane Fitness. He met with some of the Octane Fitness staff in December at the Athletic Business conference in San Diego.
Also at the conference, Augie kicked off preparations for the sixth annual Bash for Augie’s Quest, which will be held March 18 at the San Francisco Marriott as part of the International Health, Racquet and Sportsclub Association (IHRSA) conference and trade show. The theme for this year’s bash is Make a Muscle, Make a Difference.
Along with his wife, Lynne, Augie serves as co-chair of the ALS division of the Muscular Dystrophy Association (MDA). Through Augie’s Quest, a fund-raising initiative that began in 2006, the Nietos have helped raise more than $26 million for ALS research.
That money already is making a difference. There’s a new drug that has slowed the progression of ALS in the animal model, Augie says, although he could not get into specifics about the drug.
“When I was first diagnosed [in March 2005, at the age of 47], all I could see was the wheelchair,” Augie says. “Now, all I can see is the person. For the first 25 years of my adult life, I was trying to get the world to embrace building their muscles. Since my diagnoses, I am trying to prevent ALS victims from losing their muscles! It is the irony of my life.
“ALS is like running a marathon,” he adds, “not knowing where the finish line is, not knowing where the hills are or where the water stations are.”
It’s interesting that Augie speaks in terms of marathons. His business model at Life Fitness was sprint and recover, which also was one of the chapters in his book “Augie’s Quest: One Man’s Journey from Success to Significance.” Yet Augie is used to marathons—he has run 21 in his life—and without that training, his battle would be more difficult, he says.
“The hardest thing that I deal with [is] the constant change,” he says. “Every day, I wake up weaker than the day before. You try to adjust to the new limitations, and just when you figure it out, it changes again.”
Augie doesn’t often use the DynaVox voice system to relay what he is saying, but he did use it for a short time while thanking everybody who came to the event in San Diego, which attracted some of Augie’s old friends from Life Fitness. While there, Augie breathed with the aid of his BiPAP apparatus, which he had removed from his nose and mouth for only a short while. The system, which forces air in his lungs, is on 20 hours a day.
It takes three hours for Augie to get ready in the morning, including two hours of treatment for his lungs and one hour of treatment at night before bed. In addition to Lynne and a personal assistant, Augie has a team of nurses to give him the required 24-hour care.
Augie says he does not feel pain when he moves his feet to communicate. One day, though, he will not be able to move those muscles. That’s when Augie will use the eye-tracker system full-time.
Besides his legs and facial muscles (he can nod and smile at you after saying something clever), Augie says he still has the use of a certain part of his anatomy.
“My Willy still works!” he notes with the capital “W” included in the text on his screen. “I have been telling my wife that my Willy is an involuntary muscle!”
After typing those sentences, Augie turned on the automated voice so that his nurse, his personal assistant and two other women from the MDA could all hear the message. You better believe Augie was smiling then.
None of Augie’s physical limitations or the challenges that ALS brings can hold him back. Last August, he traveled 18 hours from his home in Corona del Mar, CA, to Sun Valley, ID, to attend the wedding of his daughter, Danielle. The Nietos have three other children: Austin, Lindsay and Nicole, who will be married in September.
“It was a wonderful event!” Augie says, with the exclamation point noted. “It makes life worth living! I get energy from events like this!”
When Augie and Lynne travel these days, they travel “like a rock band,” he says. After the event in San Diego, Augie and Lynne flew to their boat in Puerto Vallarta, Mexico. It takes seven crates to transport all of Augie’s necessary equipment.
A funny thing happened on that boat in Puerto Vallarta. While Augie was being transported from the boat, the lift that carried Augie and his 400-pound wheelchair stopped, leaving Augie suspended in midair over the bay.
“I can’t even wave to the party boats as they pass by!” Augie says.
Augie, who turns 53 on Feb. 15, is still at the forefront of the industry. At the IHRSA show next month, Life Fitness will unveil its Augie’s Quest LifeCycle, complete with the Augie’s Quest logo and Augie’s Success to Significance inspirational message. Also at IHRSA, a book outlining the history of the health club industry will be released. The proceeds from both the bike and the book, which is dedicated to Augie, will go to Augie’s Quest.
“I continue to be amazed with the love and support!” Augie says. “My biggest fear is to be discounted! I want to remain relevant! I’m planning to live 30 more years! As long as I can communicate, I can visualize living that long!”