I am often asked, “What has it been like living with ALS for ten years?”
To be frank, it’s been f%*#ing nuts.
Living with ALS for a decade has been a tidal wave of emotions and experiences – much too hard to sum up in one blog post, but I’m going to take a stab at it.
Before my diagnosis, I lived the fast life. I would drive my Ferrari down Pacific Coast Highway like greased lightning. My wife, Lynne, says she always knew when I was home because she could hear the sound of the engine revving down the driveway.
Life pumped the breaks, and now, I’m riding around in a wheelchair accessible mini-van. How life changes.
Before ALS, things like a Ferrari mattered to me – showing success through material things.
ALS has humbled me in a way that I cannot express. Today, telling Lynne how much I love her or how beautiful she looks and seeing her smile brings the same joy.
It’s hard to have a positive outlook when living with ALS, but I encourage other PALS to treat the simple things in life as the blessings that they are.
While I currently display the “softer side”, the same fire, prior to diagnosis, continues to burn within me. ALS may be taking the strength away from my body, but my mind is only getting stronger.
Through this disease, I’ve made a commitment to myself to continue to make bigger strides, both personally and professionally.
I’d like to share with you some memorable moments from the past decade living with ALS.
1. Being on front page of the Wall Street Journal was a pretty big deal. Even though it was for reasons I never anticipated, I was honored to be written about by such a prestigious publication and to spread awareness for ALS.
2. Lynne and I renewing our vows for our 10-year wedding anniversary. This happened shortly after my diagnosis, a time where everything was in question and nothing seemed permanent. My wife is my hero. Her devotion and unconditional love is one of the greatest gifts I’ve been given. This August, we’ll celebrate 20 years…being married just as long “with ALS” as we have “without ALS”!
3. My first big break on TV: being a guest on the TODAY show and meeting my dear friend and long-time supporter of Augie’s Quest, Natalie Morales. Natalie has been a steadfast advocate for my Quest and I’ll never be able to repay her for all she has done for me.
4. Partnering with ALS Therapy Development Institute last April was monumental in the quest for a cure. ALS Therapy Development Institute is the #1 ALS research lab in the world. They possess the same passion and determination as Augie’s Quest. Together we are on a mission to end ALS for good.
5. The Ice Bucket Challenge..WOW. Seeing the world embrace ALS awareness for the FIRST time in history is truly remarkable for a patient like me. For so many years, ALS has been thrown by the wayside, and now, with the help of an imaginative, mind-blowing social media phenomenon created by Pete Frates and Pat Quinn, brave PALS like Anthony Carbajal (below) are standing at the forefront of advocacy, and support from a slew of celebrities and community, the world now knows what ALS is.
6. Publishing two books. My first book, “Augie’s Quest – One Man’s Journey from Success to Significance”, was especially meaningful because it was a way to express every aspect of my journey, while bringing to light the importance of changing the way we look at ALS research. My second book, “Reciprocity” focused on leadership roles in business, something I’ve always had an interest in. I was fortunate to have interviewed key CEO’s and able to pick their brains for valuable content.
7. Family Moments. Walking my beautiful daughter, Lindsay, down the aisle was one of the most special moments of my life. Come hell or high water, I was stopping at nothing to stand by her side and give her away. Other great family moments stem from my grandchildren, Scarlett, Michael, and the latest addition due in June – the family is very excited. Their sweet innocence brings us joy.
8. Developing a friendship with John Ondrasik of Five for Fighting has been remarkable. John signed on to be the headliner for the Bash in 2007. After spending time with him, he generously donated his entertainment fee back to Augie’s Quest. To top it off, he wrote an incredibly touching song that he titled, Augie Nieto. Our relationship has become very strong and I am thankful for all he has done for Augie’s Quest.
9. Friends in high places. I’ve had the pleasure of meeting a number of celebrities who have displayed support, and through the years we’ve become friends. Among them, Nancy O’Dell, host for Entertainment Tonight and Pat Monahan, lead singer from Train have been ground-breaking in using their networks to support my Quest. Nancy lost her mother, Betty, to ALS, so she’s been an advocate for very personal reasons. Pat has the same crazy sense of humor as I do, and it’s refreshing to be so real with someone. (and it doesn’t hurt that he loves Life Fitness treadmills)
10. Meeting families living with ALS. There’s been so many inspiring and incredible people, I don’t want to leave anyone out so I’ll leave it with one of the most recent heroes I met:Matt Bellina. He’s a US Navy Lieutenant Commander who was recently diagnosed with ALS at age 30. Being able to spend time with other PALS has certainly been the most valuable experience. I am not alone on this journey and seeing others with the same struggles makes my determination to find a cure that much stronger.
As challenging as these ten years have been, I’ve encountered many life-altering moments that have shaped my character for the better. Tremendous progress has been made with awareness and getting closer to a cure – we won’t stop until we beat this S.O.B.