The Indomitable Augie Nieto Has More Energy These Days

augie-telethon.JPGAugie Nieto made his annual appearance on the Muscular Dystrophy Association (MDA) Labor Day Telethon on Sunday with a new look and a renewed passion for life.

Rather than appearing on stage in Las Vegas, Augie, his wife Lynne, daughter Lindsay and son Austin were interviewed via satellite from Augie and Lynne's home in Corona del Mar, CA. (Photo courtesy of the MDA.) Preparations for daughter Nicole's wedding this month kept the family at home this year for their appearance. (Another daughter, Danielle, was married last year.)

Telethon co-host Nigel Lythgoe, standing alongside co-host Nancy O'Dell, who has hosted the Augie Bash for Augie's Quest at the IHRSA show in years past, reminisced with Augie about his visit last year on Lythgoe's TV show "So You Think You Can Dance." Lythgoe then brought up something about Augie that hadn't been publicized before.

"Now we know that your family has been going through some terrible times here," Lythgoe said.

"Some would say terrible," Austin said. "Some would say that it's actually been a blessing to our family."

That's when Austin told the world that his dad was "trached" in June. Augie says that 90 percent of patients, who, like him, suffer from amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), do not receive a tracheotomy, in which a tube is inserted in the trachea to allow a person to breathe without the use of his or her nose or mouth.

After the telethon, Augie, who turned 53 in February, told me by email that the past few weeks with his new breathing apparatus have been difficult—only he used more colorful language.

"It's been an SOB since the trache!" Augie writes. "I can finally see the light at the end of tunnel. I just hope it's not a train!"

Augie went on to write that despite the difficulty, he is making progress every day, and he credits his 21 marathons for giving him the stamina to push forward.

"It took everything I had," he writes. "Maybe it was the 21 marathons, except with ALS, you don't know where the hills are, where the water stands are or where the finish line is. You have to reinvent normal every day as your body gets weaker. I can't tell you what it is like to see every day something on your body [getting] weaker/stop functioning! It's great to see progress verses regression."

In fact, here are five results of the tracheotomy that Augie has experienced, in his own words and punctuation:

— More energy!

— I'm warm again! It's amazing what 70 percent ventilation does to mind, body and spirit!

— I have motivation that I have not experienced since ALS!

— I feel like the blind man who can hear better!

— No mask!!!! You can see my ugly mug

Augie's Quest, MDA's ALS research initiative, has now raised almost $29 million since 2006. Could we be seeing a breakthrough in finding a cure for the disease? Well, a few weeks ago, Augie himself tweeted this story from the Chicago Tribune, in which researchers at Northwestern University say they have found a cause of ALS that might pave the way for treatment.

Let's hope that treatment comes soon for all ALS patients, especially Augie, who continues to amaze and inspire.

Please or Register to post comments.

What's Behind the Scenes?

Behind-the-Scenes - Get a look behind the magazine--the people the editors talk to, the clubs they visit and the stories they are working on.

Blog Archive