In 2005, Augie Nieto’s life was turned completely upside down. The “Steve Jobs of the fitness industry” and founder of Life Fitness was diagnosed with Lou Gehrig’s Disease, Amyotrophic Lateral Sclerois (ALS), a disease known to be painful and quickly fatal. But Nieto soon discovered that his story was nowhere near over.
Today, 13 years since his diagnosis, Nieto and his wife, Lynne, are fighting day in and day out to find a cure for ALS, a disease that Nieto says saved his life—and his marriage. Last year, director James Keach (“Walk the Line, “Glenn Campbell…I’ll Be Me”) told the Nietos’ inspiring story in the documentary film, “Augie,” available today, March 20, on DVD or for purchase on iTunes or Amazon.
In anticipation of the film’s release, 24Life asked Augie Nieto and Keach to share more about ALS, what they hope viewers take from the film and what’s next for Nieto and the cure for ALS.
24Life: What was the first thing that went through your head when you received your ALS diagnosis?
Augie Nieto: When I was diagnosed with ALS 13 years ago, I was in utter disbelief. “Shock” comes to mind. My biggest fear was being a burden to my family and not wanting to rely on others. I wasn’t eating, sleeping or thinking clearly. I was merely existing. Initially I was very angry about my diagnosis.
24Life: How did ALS save your life—and specifically, your marriage?
AN: As time went on and my ALS symptoms progressed, I had to increasingly rely upon others for most of my needs. Once I accepted that this was my fate, I began to see through different eyes! This acceptance turned into gratitude for those who were willing to help me, and that gratitude allowed me to have more empathy for those who willingly lived with me and my disease.
It took a while, but once I realized that those who were standing by my side had “enlisted,” and I was “drafted” in this war against ALS, all of my relationships took on a different meaning. I now know about accepting help, relying on others and being a part of something greater than myself. This is the gift that my ALS has given me. It has allowed me to be a better friend, father and husband to [my wife] Lynne.
24Life: What would you say to those who have been diagnosed with ALS, or have a loved one that was just recently diagnosed with ALS?
AN: I think that the biggest difference between someone getting diagnosed with ALS today versus when I was diagnosed 13 years ago is: Today there is REAL HOPE! We have made so much progress in the past 13 years and there are potential treatments on the horizon.
I would also remind someone newly diagnosed that their entire family also has been diagnosed! They will increasingly need their family, and it is important that those relationships are nurtured and appreciated. I could have used that advice myself!
24Life: What do you hope people learn from/take from this documentary?
AN: It is Lynne’s and my hope that by putting our story out there, we can touch others who are going through difficult times, raise awareness and critical funding for effective treatments and an ultimate cure for ALS—because ALS isn’t incurable, it’s underfunded.
24Life: What is one thing many people might not know about you?
AN: I may appear to have a tough exterior, but when it comes to the people I love, I’m mush.
There’s real joy in looking at the life Lynne and I have built together despite ALS. Watching “Augie,” it’s amazing to see on the screen how lucky we’ve been in this disease, after 13 years and all that has happened. Seeing so much unfold that we never thought possible with a diagnosis of ALS—we’ve celebrated the marriages of our four children and the birth of our eight grandchildren.
When I was first diagnosed, we believed those life moments would never happen. So much of that is revealed in “Augie.” Seeing those moments in their entirety, as some mega-photo book, a real-life memory album come to life, is incredible. It’s the best gift.
Also, my favorite movie is “Shrek”!
24Life: What is one thing many people might not know about ALS?
AN: ALS is a beast of a disease. But there’s a lot of love, passion and fight in the ALS community, in our collective battle against this disease! We’re lucky to be surrounded by so many incredible ALS champions—the many people living with ALS, our family, friends, caregivers, the research community, our new friends in Hollywood, the entire fitness industry … It’s a pretty special group of spirited and committed individuals who’ve joined Lynne and me on this crazy quest to end ALS.
We’re lucky in this disease. What some people don’t realize is that the average lifespan is two to five years. This month we’ll celebrate our 13th anniversary with ALS, and I’m so grateful.
24Life: Who inspires you?
AN: Easy question: Lynne. I joke with James Keach and Eric Carlson about this, the film’s director and producer, respectively. I think the title for the film is all wrong. It should be “Lynne.”
Lynne’s role has morphed over time during our years with ALS. When I was first diagnosed, Lynne took it upon herself to stay one step ahead of the disease and make sure things that I needed were in place before I actually needed them. This allowed me to stay focused on Augie’s Quest to Cure ALS and raising funds to support the ALS Therapy Development Institute. Over time, I began to lose my ability to speak, and Lynne began helping me out at our presentations around the country. Since I have completely lost my ability to speak, she is now my voice.
More accurately, she has found her own voice. Lynne has never faltered in being by my side and supporting me. Our marriage has strengthened and our trust in one another has never been stronger. I feel fortunate to know what unconditional love feels like!
That’s why I say the film should really be called “Lynne” and not “Augie.”
24Life: What’s next for you and Lynne?
AN: Today, we remain 100 percent committed to finding effective treatments and an ultimate cure for ALS. It’s why we started Augie’s Quest to Cure ALS nearly 13 years ago, it’s why I serve as the chairman of the board for ALS Therapy Development Institute. We go after this disease with everything we’ve got, rallying the fitness industry, our friends, family and donors to raise urgent funds for Augie’s Quest and the ALS Therapy Development Institute, our amazing, innovative and groundbreaking work. It’s a full-time job, unlike any before in my fitness career, fueled by a newfound passion and drive to beat this disease and bring hope to thousands suffering today.
Our work is paying off. We will have our first drug, AT-1501 in Phase I Clinical Trials this year, and funding willing, in Phase II trials shortly after. AT-1501 is not a cure, but has shown in our testing to slow down the progression of the disease. That being said, it is the most exciting thing we have seen in ALS. We have identified two more compounds that look promising as well. We hope to get people living longer with the disease, while we pursue a cure.
On a personal note, Lynne and I just welcomed our eighth grandbaby into our wonderful family, so we’ll continue to do as much as we possibly can with our incredible kids and grandkids.
James Keach, director/producer
24Life: What drew you to Augie’s story?
James Keach: Eric Carlson, my producing partner on “Augie,” was approached to do this film as a narrative story from Lynn Hirshfeld, an executive at Participant Films. When I read the script, I felt that it was not something that I wanted to do at the time. Augie contacted us directly and asked if we would just come down and meet with him to discuss the possibility of making a film about this journey. We drove down to Orange County and met with Augie, his wife Lynne and many of his friends. Lynne was the glue that cemented the decision to make the film. It was quite obvious that their love story was one that needed to be told and that his will to live was unsurpassable. I like making films about people who inspire me and teach me about myself. I knew it would be a tough story to tell, but I was compelled by Augie and Lynne and their determination to change the world.
24Life: What do you hope people learn from this documentary?
JK: I hope people come away from the documentary appreciating every minute that they have. Augie and Lynne have taught me to live life on life’s terms and to accept what we are given. I am not sure I could have battled like Augie. He takes every day and tries to make a difference to all of us. His friends say Augie has learned how to live by having ALS. Lynne says their marriage has never been better. Augie laughs every day and that’s something I try and emulate.
24Life: You’ve directed and produced a number of films and documentaries. How was the process of telling Augie’s story different from other films and documentaries you’ve done?
JK: Telling the story was tough in that we were dealing with the central character who can only communicate by typing with his big toe. It was also a fantastic opportunity to use filmmaking and some of the opportunities we have at our disposal to tell the story in a very creative way. I wanted to tell Augie’s story from his point of view. So we utilized the screens on his chair for him to see what others said about him and used his computer voice to comment on the journey he has been on for the last 12 years. Like John Cash and June, Glen Campbell and Kim, Augie was blessed to have a loving family and an incredible wife. Lynne Nieto and Augie go back to a love that started in high school. They married other people and came back together for this last and most inspirational chapter. Without her, I do not think he would still be with us. But they are stronger than ever.
24Life: Since making “Augie,” you’ve gotten to know Augie himself very well—what inspires you most about him?
JK: The love of his family, his insatiable drive to find a cure for ALS and his wicked sense of humor.
Photo credit: Courtesy of Augie and Lynne Nieto; PCH Films