Ask Me Anything – My “No Holds Bar” Interview

The results are in! Thank you to everyone who responded to my Facebook post and asked me some interesting (and challenging) questions. I was overwhelmed with the amount of responses and questions I received. I apologize for taking an extra week to post. I wanted to be sure I answered each of your questions in a thoughtful manner. Now, without further ado…

  1. What is your biggest motivation?- It sounds cliché but it really is to end this damn disease. I’ve gotten to see my kids get married and have babies and I’m grateful for that.  But there are so many people who are diagnosed with ALS that don’t get to see these milestones or watch their children grow.  It really is the worst diagnosis on the planet and my entire Being is motivated with everything I have to make sure that one day families don’t have to endure ALS.
  2. If you could still eat one thing off of the value menu at McDonald’s in its true form, not blended together in a feeding tube, what would it be? -@jreboudo100989 IG – McDonalds wasn’t really my thing “pre-ALS” but I love this question so I’ll play anyway! My cheat day consisted of a lot of burritos so if and when I can chew my own food again, I’ll probably head straight to ANY local Mexican restaurant and inhale a giant Californian Burrito faster than you can say A-L-S.
  3. What more can be done to raise awareness?  My husband died from this dreadful disease.  There are still so few answers.  How much of a donation goes to research? –Sandra Swindler FB – We are working on a Documentary now to raise more awareness for ALS research. I can’t disclose details at this time but we are working with an A-List Hollywood Director on the story which I believe will be a “Game Changer” for the ALS community.  I’m happy to let you know that the answer to your 2nd question is 87% of all donations go directly to ALS research in our lab.
  4. What will it take to have the FDA make more timely decisions on drug approvals and/or human clinical studies.  Needless to say, I am a pALS. – Clara Coleman Woodall FB – the ALS Association spends most of their fundraising dollars on Advocacy for these types of issues (and they raise A LOT of money each year – $120 Million for the Ice Bucket Challenge alone). Since their mission is centered around nationwide Advocacy, we need to put pressure on them to work more effectively with the FDA.
  5. What does someone suffering from ALS want to hear from a friend, and NOT want to hear?  What’s the best way to help? -Carrie Stearns- They just want you to show up.  Don’t worry about saying the wrong thing.  When you are diagnosed with ALS, everyone comes…at first.  And then they stop coming around because they are afraid of what the disease looks like or afraid they will say the wrong thing.  I’m lucky to have a few close friends that have continued to show up after all of these years.  There’s nothing like ALS to show you who your real friends are!
  6. ALS must come to an end.  – Scott Barrow FB – Indeed!
  7. What would you have done differently with your life, pre-diagnosis…knowing what you know now? – Joe CollinsI would have put less of a priority on growing my business and more priority on my family.
  8. You’re a Saxon, a kid who grew up in the shadows of the Matterhorn, me too. I worked for you at Life Fitness (my first job after CSUF in 1987). Life changes us – from the boy to the man today, what’s the best thought/mantra/tidbit you’d like share? – Suzie Powanda FB– Go Saxons!  Live like today is your last.  Love like today is your last.
  9. What’s the hardest decision you’ve ever made?– To go on a ventilator.
  10. (Questions 10 – 14 ) Why can’t we hurry up and build more facilities for those that need it now?  I’ve been out of work for 5 years taking care of my husband, funds are dwindling, where do we turn for help? Chelsea Boston won’t even talk to me. What do the rest of us do? Other than die along with our loved ones? I’m glad for those of you that have unlimited funds and help, but I’m part of the ones that aren’t so lucky. Please help do something for those that need the help today! Thanks! – Sandra Ybarra FB
  11. We need ONE UNITED foundation instead of 1,000 doing different things.  I’ve put the idea out there of doing a small home that doesn’t require all the red tape. What if we had 3-5 resident home where families can pool their money together to help each other? Instead of me paying for one caregiver for 6 hours a day, we could have 2-3 patients in one home and fund the caregiving. UGH! Sometimes I believe ALS will kill me before it takes my husband who is the one with this crappy ass disease! HELP! – Sandra Ybarra FB
  12. We feel hopeless, no cure in sight, too many orgs, foundations and associations.  –Mike DeBartoli FB
  13. I’m very fortunate to have been eligible for VA benefits, but the toll it’s taking on my wife and primary caregiver is nothing new for CALS who can’t afford paid full-time caregivers. Now her mother is in her final days so she’s torn trying to be in both places at one time 100 miles apart! – Steve White FB
  14. How close do you think we are for an effective treatment that pALS can access? I’m banking on ALS-TDI as our greatest hope. – Shelly Austin Hoover FB

Many of you asked about caregiving and housing.  I would agree that this is an extremely important issue for people living with ALS today.  I’m aware that it takes more resources than the average family has to “live with ALS”.  Some of you questioned why my organization is funding research and not these other issues.  I’d like to humbly ask you to remember that I’m one person…one man living with ALS.  And as much as I hate to admit it, I’m not really famous…yes, I’m well known in certain circles like the fitness industry but I’m no Christopher Reeve.  So when I was diagnosed with ALS, I had a choice, I could use my own resources to take care of myself and my family and live in private with ALS.  Or, I could use my contacts and connections to fund something that I thought would make a difference.

At the time, in 2005, Academia was mostly researching what caused ALS.  I didn’t care what caused ALS…I wanted to fund a cure or a treatment.  ALS TDI’s former President, Sean Scott, said it best “If your house is on fire, you don’t run around trying to find out what caused it, you put it out!”.  Lynne and I made the decision to create Augie’s Quest as an avenue to fund the best ALS drug development in the world. Since we started we have funded big projects in genetics, drug screening and clinical trials at ALS TDI. We currently have three different clinical candidate therapeutics, and completed a successful phase 2a study on one of them last year and we are working hard to get the other two into trial as soon as possible as well. I am so proud and all of you should be too that ALS TDI created the world’s first precision medicine program in ALS and we have enrolled about 250 people from 6 different countries so far! This new program will uncover subtypes of ALS, help us find potential treatments for those subtypes and speed up clinical trials. And we are about to announce an expansion of that program to include even more people with ALS – so stay tuned!

As far as the questions and suggestions about the ALS organizations combining efforts, I agree but easier said than done.  With varying mission statements, boards of directors, operating systems, etc, this is a challenge larger than I’m prepared to explain, however, I’m proud to say that one such collaboration IS in the works and we are a part of it!  That is ALS ONE, which is a partnership between ALS TDI, MGH, and UMass Medical. As partners, we have challenged each other to work toward finding an effective treatment for ALS within the next four years. This is an unprecedented partnership – and we use that word deliberately – not a collaboration. There are specific milestones that the three research organizations have outlined and ALS TDI is certainly no small player in ALS ONE! I would also add another example, an effort called Collaboration for a Cure, which is a new effort that ALS TDI is helping to lead in partnership with 22 different ALS organizations here in the US and Canada. We have our next meeting of Collaboration for a Cure in March 2016 from which I expect we will have a much clearer path forward about how we unify and move forward together with those other nonprofit organizations. However, Lynne and I believe that ALS TDI is the most efficient, most advance, most innovative ALS research institute in the world; and while we support and encourage ALS TDI working closely with others, our efforts through Augie’s Quest and our own personal efforts will continue to be directed specifically to ALS TDI.

In summary, if I had the ability to fund housing and caregiving for every family dealing with ALS I would. But I don’t.  And so I must continue on with my mission of finding a treatment for ALS because I believe it’s the BEST use of my time and resources.  The VA has recently changed their stance on funding caregiving for ALS so let’s hope the US Government follows suit soon so that we can all focus our energy on a cure.  I found this FAQ on ALSA’s website about what the VA covers for ALS http://www.alsa.org/als-care/veterans/faqs-new-veterans.html?referrer=https://www.google.com/

I tried to answer all of your questions with as much honesty and integrity as possible. Thank you for continuing the conversation and fight against ALS!

pALS and their Dogs

Thank you to everyone who sent in pictures with there pups for my best “Holiday dogs and pALS” pics contest! Hazel was a huge support system for me, and it is so apparent that I am not the only one who has welcomed a dog into their life and allowed it to brighten up a world with ALS. Your outflow of support made choosing a top 10 so much harder.

Dogs have a way of finding the people who need them and filling an emptiness we didn’t even know we had.- Thom Jones

Drum roll please…

1. Kevin Thompson and DysonKevin Thompson and Dyson 2

2. Kay Cahoon and MiloKay Cahoon and Milo

3. Bert and BusterBert and Buster

4. Bill, Rachel, and LidoBill Rachael and Lido daughter Rachael Hirt submitted

5. Corina and Chiquita

Chiquita and Corina

6. Dominic and MickeyMickey and Dominic

7. Steve and KodieSteve and dog Kodie submitted by Rita Landry

8. Uncle Bill and AmberAmber and Uncle Bill

9. Alfredo Pedro and CiceroAlfredo Pedro and Cicero

10. Craig’s dog Gracie LouCraig and Gracie Lou

RIP Hazel. It has only been a week and you are already dearly missed.

Hazel

 

 

A Caregivers Inspiration

November is  Caregivers Month so I found it only fitting to have my first guest blog from a caregiver herself. My friend, Jenny Gore Dwyer cared for her husband, Pat, before he passed 2 years ago. Jenny shares my passion in fighting this horrible disease as she knows all too well its effects.

jennyAugie and Lynne, thanks for the opportunity to “guest” blog. You know, it’s kinda funny that you asked me to do this…when everything started popping up about Caregivers month, it made me remember that I would get a few notes from people, with positive affirmations, and thanks for taking care of Pat.  Now that I’m not “officially” a caregiver anymore it kinda made me sad. Not that I wasn’t getting little notes anymore, but that I wasn’t a caregiver anymore….ALS comes blaring loudly into your life, and on the flip side, when it’s done, it’s done…gone, just gone.

People who live with ALS make big decisions everyday about how they want to live with their disease. Pat had a bottom line what he would live with and what he wouldn’t. The day came where he decided he was done. As caregivers, we try to support them as best we can.  But, now two years later, I realize I didn’t fully understand the finality of his decision, and honestly, I really don’t think I ever will…while caregiving, and caregiving for your spouse especially, is the best job you will ever love and hate at the same time, when it’s over, it’s sad. Sad because you are missing the person and the amount of life and joy that filled up your day, because they were around.

But for me, I know Pat loved life. He loved everything about it. The way he lived his life with ALS was an inspiration to me, our kids, our family and friends. Granted, some days those “inspirations” came through loud, grumpy, angry and clear, but usually laughter won out at the end of the day. Now that my days are no longer filled with caregiving, I still use Pat’s love of life, to help guide me through mine. I’m inspired when I find that simple joy for the day…it can be as simple as a lovely sunrise, the smell of the ocean, that first sip of coffee in the morning, the sound of my kid’s voice on the phone, or eating a box of Good & Plenty candy. 

To all my fellow caregivers, present and past, big hugs to all and thank you for all you do, everyday. You inspire me.

                    -Jenny Gore Dwyer

Mitch Albom, Tuesdays with Morrie

Mitch Albom- Tuesdays with Morrie

Five For Fighting- Hope

Five For Fighting- Hope

howard-schultz-wsc

A Caregiver's Daily Affirmation

Joel Osteen

ronald regan

-Ronald Regan

Anonymous

-Anonymous

10 Years of Tradition…a look back at the past

As we prepare for the 10th annual Tradition of Hope Gala this Saturday, I began to think back on the past nine events. From incredible honorees, to awesome entertainment and celebrity guests, each one has been special in its own way – but they all have one thing in common. Any guesses on what it could be?!   You got it! Hope. Hope for each pALS. Hope for each family and friend of a pALS. Hope for a CURE so no one else has to be effected by this damn disease.

Now for some highlights from the past nine years:

2006: As our very first Tradition of Hope, this event holds a special place in my heart. We honored Peter O., John F., and Edmund H. Shea with the Founders Award.  I’m so thankful for their leadership and sharing their incredible legacy.

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2007: Alexander L. Cappello was honored with the Founders Award.  Little did we know then that Alex and Linda would be the force behind the Tradition of Hope as our esteemed event chairpersons.  And yes, Sophia is holding up a book she wrote about Augie’s Quest – one of my biggest honors.

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2008: We honored Scott Olivet with the Founders Award and also added the Vision Award which was presented to Earvin “Magic” Johnson.  We brought a new level of fun to the event with bikes jumping over the crowd and our fun “board shorts to black tie” theme.  Of course Scott had a special Augie’s Quest tux created by Oakley that was legendary.  We also were privileged to have my dear friend Eric Scoggins attend this year and brought engagement from “Magic.”  Miss you, Eric.

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2009: This year we presented Nancy O’Dell with the Champions for ALS Award and Phil Smith with the Humanitarian Award.  We’re so proud that both are still so involved with Augie’s Quest.  Nancy is our official spokesperson for ALS.net and Phil continues to support ALS research through his engagement with our ClubCorp events.

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2010: The Founders Award went to Mark Wetterau, John Ondrasik was awarded the Champions for ALS Award, and the first Courage award was presented to Bob Donato and Family.  We love you Captain Bob!  John epitomizes the word Champion – he continues to be such an amazing advocate for ALS and for me.  Mark rallied the entire Golden State Foods team and all of their vendors to break fundraising records and pull us out of the fundraising recession. You’re the man Mark!

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2011: Cast members from So You Think You Can Dance made a special appearance thanks to my friend Nigel Lythgoe who recieved the Champion for ALS Award. while watching them perform, I was amazed at their strength and athleticism.  The Founders Award was presented to Peter Ueberroth and David Pyle was presented the Humanitarian Award.  David and Peter are both still extremely generous donors year after year!  We are so thankful to all of you for being incredible advocates for our Quest to end ALS.

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2012: Bob Olson was awarded the Founders Award, Lauren Witsenburg received the Courage Award, and Alison Greenspan was presented the Champions for ALS Award.  It was an incredible night, and such an honor to have the talented and beautiful Hilary Swank introduce Alison.  Sadly, Lauren lost her brave battle with ALS shortly after the event, and we are so happy her husband and son can join us to celebrate our 10th year.  Bob always says yes when we ask, I am so thankful for your friendship, Bob.

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2013: The Founders Award was presented to Ivo Tjan and Eric Affeldt was awarded the Champions for ALS Award.  Eric was most deserving of this award – the ClubCorp Charity Classic he runs every year is our strongest corporate fundraiser for ALS – probably in the world!  Ivo, Founder of Commerce West Bank, was an extremely generous honoree and because he is so well liked in the community, brought us many new AQ supporters that come back year after year!

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2014: Richard Paek was awarded the Founders Award and José Cofiño was presented the Courage Award.  Richard was the most hesitant honoree we’ve ever had but boy are we glad he agreed!  Richard enrolled all of the Allied Lube franchise stores into a month-long mobile campaign for AQ, which is currently repeating for their 2nd year.  Jiffy Lube/Allied Lube is now one of our largest sponsors.  And José…well by now you all know José but let me just say, his acceptance speech was one of the best we’ve seen!

Collage

Stay tuned for live updates on Saturday!

Augie’s “Top Ten” Inspirational Blogs about ALS

Now that I have become a “blogger” I would like to acknowledge some of the blogs that have inspired me from people fighting the same fight I am. We, pALS, are all in this fight together and I am sure I am not the only one who has found inspirations from other members of the ALS community.

  1. Jose Cofino: http://www.beyondals.org/“Jose graciously accepted the Courage Award last year at our Tradition of Hope Gala.  Never have we had a more dynamic PALS speak to our crowd…not a dry eye in the room but left all 400 some guests with a feeling of hope and a sense of urgency to help.  A teaser to his documentary can be found on his blog….if you haven’t watched it, I suggest you do!”
  2. Kevin Swan: http://www.alifestoryfoundation.org/blog/Kevin shows us everyday that ALS doesn’t define who you are. It’s just part of your life story.  We’re so grateful he shares his Life Story, and those of other amazing pALS.
    Kevin Swan
  3. Sarah Coglianese: http://www.speed4sarah.com/sarahs-blog/  “While Everyone in the ALS community was putzing around all year trying to figure out how to make Ice Bucket Challenge 2.0 “work” this beautiful mom created a new and fresh campaign to raise awareness for ALS”
    Sarah Coglianese and family Oct 2014
  4. Andrea Lytle Peet: http://www.teamdrea.blogspot.com/ Andrea was diagnosed in May of 2014 a month after completing a 70.3 triathlon. After diagnosis, Andrea completed her 10th triathlon and will continue to trike alongside her husband, David, for as long as possible. She now advocates and is one of the “Young Faces of ALS” for ALS.net.Andrea Lytle Peet
  5. Stephen Finger: https://stephenfinger.wordpress.com/ Stephen Finger is not only an economics professor but most importantly an incredible dad and husband.  After he was diagnosed with ALS in 2013, he started a blog chronicling his family’s journey living with the disease and his writings have appeared in the Huffington Post. He was awarded the 2014 Stephen Milne Adventurous Spirit Award by the ALS Therapy Development Institute and is an ardent supporter of their work. He also serves on the Board of Advisors for the Every90Minutes Foundation. – See more at: http://community.als.net/rootforacure#sthash.ykHXEZu8.dpuf
    Stephen Finger and family
  6. Beth Hebron: http://www.betonbeth.com/ After being diagnosed at 26 and having to leave her 80/hour a week paralegal job in Washington DC, Beth decided to put all of her energy in her Bet on Beth Campaign, raising awareness for ALS Therapy Development Institute’s Precision Medicine Program, traveling, and checking things off of her bucket list!
    Beth Hebron
  7. Collin Hadley: www.curveballhadley.wordpress.com/ A loving husband and father and avid sports fan, Collin received his diagnosis last OctoberHe may have been dealt the biggest curve ball of his life, but he will not go down without swinging.
    COllin
  8. Jay Smith: www.every90minutes.org ”This blog is the one you want to read if you want to learn about a kick-ass dad and husband who has ALS and a real way with words.  Jay is a gift to the ALS community and his blog should be read by people far and wide whether they have ALS or not….his honesty about living with ALS will teach us all a thing or two about remembering what is really important in life”
    Jay Smith and family
  9. Bobby Forster: http://www.acureforforster.com/what-bobs-doing/“25 Year old Bobby Forster might just be the sweetest soul in the ALS community.  After being diagnosed, he married his fiancé and then rode a whole day in the Tri- state Trek for ALS TDI Originally hailing from Beverly, MA, Bobby has lived all over the country. He is an avid cyclist, sailor, surfer, and adventurer.
    Bobby Forster engagement
  10. Steve and Hope Dezember: http://www.hopeforsteve.com/ Steve was diagnosed in 2011. Now he and his wife, Hope want to spread awareness and most importantly HOPE for all those diagnosed with this horrible condition. Hope always says “Life is a gift and every single day needs to be special.” The couple lives through these words and makes everyday more special than the last.

    Steve and Hope Dezember

Top 10 Favorite IBC Video’s from 2014

In the 10 years that I have been living with ALS never in my wildest dreams (believe me when I say wild) did I think that pouring a bucket of ice water over your head would turn into a crazy internet phenomenon bringing ALS awareness top of mind across the world. If I thought this was a possibility I would have done it years ago! Thanks to my friends and fellow PALS, Pat Quinn and Pete Frates, the ALS Ice Bucket Challenge Round Two has been kicked off by the Red Sox and will continue #EveryAugustUntilACure. I couldn’t think of a better time to reflect on my personal favorites from last year. I have come up with my top 10 favorite Ice Bucket Challenges from last year featuring some of my favorite AQ supporters and friends. Now, who think’s they can outdo these?!

10. IHRSA Video with Joe Moore-

IHRSA Joe Moore

9. Nigel Lythgoe from FOX “So You Think You can Dance”

Nigel’s heart valve pump prevented him from doing the actual challenge  so he choose the alternative and wrote a generous check to Augie’s Quest LIVE on Season 11 of Fox’s So You Think You Can Dance! We are so grateful!

8. Nancy O’Dell and Entertainment Tonight –

Nancy’s mother Betty, passed from ALS so she rallied the entire crew of Entertainment Tonight in their very own Ice Bucket Challenge!

7. Tom Garfinkle and Miami Dolphins-

Miami Dolphins

6. John Lynch – Fox Sports-

John Lynch

John and his wife Linda accepted the challenge in honor of Linda’s Mom, Ann who passed away from ALS in May of 2013.

5. Ellen DeGeneres and Anthony

4. ZUMBA Fitness

Zumba

3. The Atlantic Club – Pat Laus

Pat Laus

2. Life Fitness

Life Fitness

1. Me on Balboa Island with my friends from Newport Beach

Augie

How do I list the best IBC videos without including my own? My family and friends on Balboa Island last summer!

PS – My favorite IBC’s are from the people that really support and put their money where their ice is. ClubCorp has been one of my biggest supporters and their IBC (with a little champagne) was more than fitting to end this list.

ClubCorp

Top 10 Life Hacks for ALS According to Lynne

CAUTION:  The following post was written by my wife Lynne and is NOT intended for folks with no sense of humor.  Please do not continue reading if you are easily offended by potty talk or the ability to make light of ALS.  For the rest of you….(drum roll please), here is the “Top 10 Life Hacks for ALS According to Lynne”!

#10-  Fukuoku Five Finger Massage Glove- for “massage” and to increase circulation – be careful- remove batteries when traveling- it’s a bit embarrassing when TSA finds them vibrating in your carry-on! http://www.amazon.com/Fukuoku-Finger-Massage-Glove-Right/dp/B00009J5W4

Gloves

#9- Brookstone Bed Wedges- cheap alternative to adjustable bed http://www.brookstone.com/bed-wedge-pillow-support-cushion_8372225_2

Bed Wedges

#8-  Control 4 – imagine your husband without the ability to use the remote control!  It also has the ability to control lights, temperature and other things from your computer. http://www.control4.com/

Control 4

#7-  Roho Seat Cushions- Now, I’m the only pain in Augie’s ass! http://www.amazon.com/Roho-Cushion-removable-Charcoal-Fabric/dp/B000OXDJ1U

Roho Seat Cushions

#6-  Nutri-Bullet- great for grinding up Augie’s favorite food group- ice cream. **Note- eating by mouth when you have a trache is not advised, but I have given up!  I’m going to be really pissed if Augie dies by ice cream. https://www.nutribullet.com/

NutriBullet

#5-  Botox injections in salivary glands to control excess salvia- caregiver may get any leftovers http://www.botox.com/

Botox

#4-  ‘Nuedexta’ for emotionality- some people with ALS struggle with emotions that are out of their “norm”- when this was in clinical trials, I called it “my favorite little blue pill”- it’s now FDA approved! https://www.nuedexta.com/

Nuedexta

#3-  Toto Toilet Seat Bidet- allows for more independence longer. Even our son-in-law, who is able bodied loves his! http://www.totousa.com/products/washlets

Toto Toilet Seat Bidet

#2-  Little John Urinal-  reduced the amount of time that I spent in Men’s Rooms http://www.amazon.com/1st-Defense-Industries-3591-Portable/dp/B003VSCIJ4

Little John Urinal

#1-  Wine for the Caregiver, along with a healthy dose of a sense of humor http://www.wineofthemonthclub.com/

Wine

Okay, I realize that a lot of this revolves around bathroom humor, but that is reality of our experience. For someone who comes from a family that doesn’t have any bodily functions, this was a huge adjustment for me. For Augie, whose family celebrates every bodily function, not so much!

**velcro, zip ties, duct tape and imagination help a lot too!

Lynne

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.

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#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