10 Memorable Moments from the Past Decade

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.

WSJ

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”!

Nieto Wedding Vow Renewal

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.

natalie augie

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.

als tdi

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.

anthony ellen

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.

augies books

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.

LindsayWalkingDownAisle

 

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.

John  Augie and Lynne

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)

colage

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.

Top 10 Reasons Why It’s Good To Have ALS

The cruelest side of having ALS is that it robs you of the life you were once accustomed to. Even so, Lynne and I try to laugh everyday – it’s the best way to make the most of our time together. I’d like to start out with a light-hearted blog post by sharing some funny moments that have given us a laugh or two.

Once, we were at a small fundraiser filled with the “who’s who” of Orange County, where we raised $250,000 in one hour. At the end of the program I needed to go to the bathroom…badly!  I walked into the restroom, shut the door and proceeded to fumble with my fly. My hands weren’t cooperating, and I was running out of time. I walked back out and called to Lynne from across the room. Unfortunately, she thought that I was just calling her to go home, so she continued her conversation, until she realized that I had a panicked look on my face.

She ducked into the men’s bathroom and helped with my zipper.  I’ve never been so relieved. She knelt down to zip me back up, and that’s when the door burst opened. We looked up and just started laughing, for we both knew what the gentleman who walked in was thinking. I walked out and “high-fived” him.  Lynne followed by saying, “Next!”

Sometimes you just have to roll with the punches.

On another occasion, I was watching a TV show, where a supermodel dressed down in homeless clothes and frequented her old hangouts, only to find how she was treated differently. She was mortified how insensitive people were.

Lynne and I experienced similar reactions since ALS has become part of our lives. We went to one of our favorite restaurants for Lynne’s birthday with a close friend. We arrived late, but called and let them know ahead of time, as a courtesy. As we walked in, it was clear that the server had an attitude.

Once we were seated, we ordered a nice bottle of wine. The same server came up to our table and looked straight at the straw in my wine glass. “Do you have a different color for all occasions?” he asked, sarcastically. We all brushed it off and Lynne made a joke by saying she has an entire purse full of colored straws.

When the main course came out, the server began clearing the table of unnecessary items. He deliberately took the straw from my glass and threw it into the bottle of wine. “Since you are going to drink wine with a straw, let’s just put it in the bottle,” he said. I could see the disbelief on my wife’s face. “If he could hold the glass, don’t you think he would,” she said. She left the table in tears. The server came back to the table and tried to apologize. My friend looked at me and said, “Augie, doesn’t this ALS suck.” Looking at the server, I was sure he’d have to go clean his underwear!  Lynne came back, and saw my friend and I laughing. She knew immediately what we were laughing about – we were going to get a free bottle of wine. And we did!

When you have ALS, it’s hard to look at the positive things, but just like the free bottle of wine, here are some other great perks:

Top 10 Reasons Why It’s Good To Have ALS

#10- The fatter you are, the longer you live.

pleasantly-plump

“Being Pleasantly Plump: Way To Live Longest With ALS” article:

http://www.alzforum.org/news/research-news/being-pleasantly-plump-way-live-longest-als?id=2793

#9- You can give advice to your kids and they might even listen.

kid listen

#8-You can go to a strip club, have a lap dance, and not violate the no-hands policy.

10/12/13 Beverly Hills, CA MDA  Augie's Quest 8th Annual Tradition of Hope Gala Photo Credit: © Steve Cohn  © 2013 Steve Cohn Photography (310) 277-2054 www.stevecohnphotography.com

#7- You never have to reach for your wallet…because you can’t.

wallet

#6- You get to drink wine through a straw!

wine in straw

#5- I get to shower with my wife every day.

shutterstock_157295528

#4- When you hug women, they can’t complain when your hands are on their butt.

hand on  butt

#3-You can ask a girl to unzip your zipper.

unzip pants

#2- You can have bondage sex without straps.

…I don’t think you all need a visual for that.

#1-You get to experience the love and generosity of your family and friends every single day.

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“Always laugh when you can, it is cheap medicine.”
― George Gordon Byron