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ALS: A Love Story, by Stacie Warren Winslow

By Champions

 

This is my ALS: A Love Story. It’s about my mom, Lynda Warren.

The hardest part of my mom having ALS was knowing that she had planned to spend her retirement chasing her grandkids. She was diagnosed two weeks before her oldest two graduated from high school. She was able to see that, be a part of that celebration, but then it all seemed to progress so quickly.

Within two months she was confined to her bed or her (uncomfortable) wheelchair.

I was sad and felt cheated — for her and her grandkids, her greatest joy.

But then, we all decided we wouldn’t give our final days to ALS. We would LOVE every day. By doing so, our family would WIN.

If love alone could cure ALS, no one else would ever have to suffer its cruelty. But if we love deeply and freely, we take away the power of ALS and instead let it empower us.

ALS: A Love Story, by Jenny Gore Dwyer

By Champions

This is my ALS: A Love Story. It’s about a boy with blue eyes, and two kids.

Our love story begins in Alaska. Ketchikan, Alaska. It’s a small island in Southeast Alaska and our claim to fame is we receive 13 feet, not inches, of rain a year. When the sun is out, and shining on the water, there is no better place to be!

It was on one of those sunny days, that I met my “boy” Patrick Ford Dwyer, on the back deck of a boat, in June 1985. The boat was owned by a friend of my mom’s. He called and asked if me or my sister Mary, both boat cooks, were available to cook on his salmon tender boat for the summer. My mom said I was. She hung up the phone and suggested I head out to the boat and talk about working for the summer. (When mom “suggests,” you do!)

So off I went. I met with the Captain, and then ran into the already hired crew. I laid eyes on Pat, his blue twinkling eyes drew me in, and well, that was that. We had a really fabulous summer working together on the boat. Then, Pat asked me to come to visit him in Seattle.

I may or may not have gone down to Seattle, under the guise of living with my sister Mary and looking for work! Six months later we were engaged.Six months later we bought our first boat. Six months after that, we were married. Husband and wife. Until death do us part.

We were together for 28 years; married for 26.5. During that time, we raised a family, built a business, and created a community of the best family and friends one could ever hope for. As husband and wife, we encountered many huge, life-changing events together. We lost our first boat. I fought cancer for three years. We suffered the devastating loss of good friends and family.

But, through it all we were sustained by that “love at first sight” love. But the life events that sustained us the most were the births of our beautiful children, Brenna and Sean. They were our “loves at first sight.”

In June of 2005, life hit us with a disease called ALS. My “boy,” my blue-eyed boy Pat was diagnosed with ALS. It came marching into our lives without a care in the world, and we had no idea what was about to pummel us. But what we did know was that we had the love to see it though, however that would be.

Husband and wife. Until death do us part.

It’s been 4.5 years since Pat passed away from his ALS. Pat loved life. He loved every single thing about it. He loved making deals, he loved arguing, umm, well let’s call it “debating!” He loved dancing, playing “drums” on the steering wheel while he was driving, and singing along to the radio. He loved laughing, and telling stories, and telling us all what to do!

But mostly he loved his children. He loved them loudly with his laughing, his stories, his “debating,” his blue twinkling eyes, his smile, and his favorite way, telling them what to do, ummm, let’s say “guiding them!”

I miss him. But Pat would be the first one to say, “live life!” So, onward I go.

ALS, even though Pat is gone, you didn’t win because my ALS: A Love Story is about a blue eyed boy, who gave to me the two greatest gifts in the whole wide world…Brenna and Sean Dwyer. When I am weak, they are strong, just like their father was in every way. ALS, you didn’t win because Pat’s love will continue with our children’s love stories. Thanks for all the love, Pat.

#PFD #414 #Onward

ALS: A Love Story, by Andrea Lytle Peet

By Champions

This is my ALS: A Love Story. It’s about my husband, David.

“Love is patient…”
Hmm. The poet of that popular wedding reading probably wasn’t envisioning a husband waiting at a porta-potty at Mile 14 during every one of his wife’s five marathons to help her in and out of her trike. But that’s what our love looks like.

“In sickness and in health…”
We couldn’t have imagined 8+ years ago that those lines of our wedding vows would one day rule every single decision we make. ALS has meant giving up on children and moving away from a city we loved. It ended my career and has shaped his.

“Til death do we part…”
Ah, yes. When I was diagnosed with ALS in May 2014, I worried that I would never have another purely joyful moment. Instead, happy memories are sweeter and laughter is easier to come by. We don’t wait to do the things we want in life now because we know that tomorrow isn’t guaranteed. It isn’t even expected.

Somehow, we managed to nail the reading at our own wedding, a poem by Lloyd Lee Wilson: “Slowly we learn that we are all broken, all less than perfect, and that God loves us, each one, wonderfully even so. Slowly we learn that the real love for one another we crave is not the ideal love of my personal façade for your façade, but the imperfect intent to love that my flawed self can offer the real you.”

Because that’s what our love looks like.

ALS: A Love Story, by Jay Smith

By Champions

This is my ALS: A Love Story. It’s about my wife, Missy.

Missy and I first met in 10th grade Advanced English class. I emphasized advanced because there was obviously a mistake in putting me there. I was not a particularly good student, school was a bore and I mostly enjoyed making people laugh and getting in trouble. She was quiet and beautiful, I was loud and obnoxious. Let’s just say for her it wasn’t love at first sight and it took a few years for me to wear her down with my brash wit. We became good friends towards the end of our Senior year. I knew right away I was going to marry her one day. We started dating our first year in college and have been by each other’s side since.

We dated for eight years and got married in 2003. We moved out of the city, had two beautiful girls and life was perfect. In 2010 we uprooted our life in New Jersey to live a slower, more simple life in Austin, Texas. Those first three years were what dreams are made of. We had the perfect little tribe. The four of us did everything together. Exploring our new city, camping, boating together every weekend, and making new friends. It really couldn’t have gotten any better, well except if my bald spot started miraculously filling in with thick Fabio-like hair.

In the fall of 2013 I started having trouble with my words. I thought it was stress, Missy thought I was drinking at the office too much (drinking beer at work is kind of a thing in Austin), and the kids thought daddy was just tired. While I was probably all of those things, it wasn’t the reason for my declining speech. I had ALS.

The years since have not been easy. Missy has pretty much learned how to be a nurse, single mom, and operate on very little sleep, all while working full time to support the family and my growing needs. This is no small feat. The kids have had to get used to Dad talking through a computer and not being able to do things that other dads do. Through it all we’ve been able to create somewhat of an ordinary life through an extraordinary situation. I’m not sure love is the cure, but the unwavering love from my three Valentines is certainly the reason I’m able to live a remarkable existence, despite my physical limitations.

 

ALS: A Love Story, by Catherine Scott

By Champions

This is my ALS: A Love Story. It’s about my husband, Don.

Don and I were sitting in his parked car one bleak March afternoon in 2002, crying our eyes out and discussing matters no newly engaged couple should ever have to contemplate. You see, earlier that day, I received a diagnosis of ALS in my neurologist’s office and was given three to five years to live. Out of my deep love for him, and after witnessing what my own mother had been through with the disease, I tried to break things off. I wanted to spare him the unending challenges I knew were coming. He wouldn’t have it. His exact words to me were, “Whatever time you have left on this earth, I’m going to spend with you.” We were married that August, and we’ve been together ever since. We are each other’s best friend and source of strength, and we are abundantly blessed.

ALS: A Love Story, by Boomer Wallace

By Champions

This is my ALS: A Love Story. It is about my wife, Ali.

On May 17, 2016, as Ali and I were stuck in traffic heading to the neurologist I asked, “If we get bad news today, can we stop at the first bar we see?”

Ali said, “I’ve been waiting for you to ask me that.” To which I responded, “Well?” And then Ali, in the kindest of ways told me, “Boomer, that would be quitting.”

But later on that day in May, some four hours after that initial conversation. Ali and I were crying pretty good, stuck in traffic. (I mean, the doctor broke our hearts, but the traffic was killing us!). I turned to her and asked, “Does this mean you won’t marry me?” Ali turned weeping to me and said, “It only makes me want to marry you more, let’s go to the courthouse in the morning.”

It takes one hell of woman to sign up for this. As a friend said then, which may or may not be true, “You’ll get her best years, and she’ll get your worst.” One thing is very likely to be true, I’ll make her a widow much too soon.

We were engaged 45 days later. And married nearly one year ago.

I just can’t express enough my love and appreciation for Ali. I don’t have the words. For those of you that don’t know, Ali was my High School sweetheart. I spent the best year of my life dating her. We screwed it up in college and found our way back to each other in our early 40s.

We promised each other the next 40 years. We wouldn’t screw up the second chance, the next 40 years were ours, together. We planned and dreamed about our life together and the adventures and happiness to come.

Then it happens. Your squash game falls apart and you start twitching. Falling for no reason. Unable to bend your legs. Can’t sleep, although exhausted. Bad back, must be. But things aren’t right, and the doctor tells you have ALS. “No treatment, no cure and 50% of patients die within 2 years. Get your affairs in order.” Dreams of 40 joyful years together blown up in 2 sentences. Boom. Done. Over.

In my opinion, that’s not the real tragedy. Not the two to four years of physical suffering and mental anguish that comes with this disease. It’s the time I won’t get to spend with Ali. I think it’s worse for her. All she can do is watch and help and comfort. I have the relief of death, she has the pain of living.

She was right, Ali, on that day in May.

Because I’ve lived, laughed and loved so much in the last year. I’m glad, too, that my children won’t remember me in a wheelchair feeling sorry for myself.

Instead, they’ll think of me in moments like last night…the moments to live for, with green hair, celebrating my beloved Philadelphia Eagles at the Super Bowl. And that’s just one of many amazing, once-in-a lifetime moments, I’ve spent with Ali.

ALS: A Love Story, by Bryan Wayne Galentine

By Champions

This is my “ALS: A Love Story.” It’s about my family, my Galentines.

I was diagnosed with ALS in April of 2017.  My wife and I will have been married 14 years this coming May.

When your last name is GALENTINE – “Just like Valentine but with a G”- Valentine’s Day becomes Galentine’s Day. It’s the one day of the year that most people pronounce my last name right!

I have been a songwriter in Nashville for nearly 25 years. I go by “Bryan Wayne” in the music world. It is only fitting that I met the love of my life because of a song I wrote.

I had written a song with my bud Big Kenny (Big & Rich) and neither one of us had anything major happening in our careers yet so we were both short on $$$.  A friend suggested we record with a guy who had a little home studio in his townhouse.  It just so happened that his platonic roommate was my future wife.

And even crazier, the very first day I met her she was home from work sick! So one of my best days was literally a day when she was at her worst.

The song was called “Fly” and it’s all about chasing dreams, appreciating every moment, living life to the fullest, etc. Thankfully it wasn’t a song about pickup trucks, drinking, and partying in a field. We ended up giving out CDs of the song as a gift on our wedding day.  And I have recorded new version of the song for an upcoming record I’m working on, where I’m putting MY vocals on songs I’ve written over the years, in the event that ALS unfortunately takes away my ability to speak, and sing.

I am coming up on one year since my diagnosis. And I won’t lie, it’s terrifying.  I know the road ahead is not going to be easy. Barring a cure, I know the odds are not in my favor that I will live to see my sons graduate high school, let alone college.

But ALS has taught me to try my best, to not take a single second for granted. Some days it’s easier said than done, but I’m trying.

And it’s taught me to better appreciate my wife, my sons, my family, my friends, and life in general. I wish I had gotten that wake-up call some other way, but if it took getting ALS to wake me up, so be it.

I have decided instead of being angry and bitter about my diagnosis, I am going to take this opportunity to remind my friends and family how fleeting life is, and how important it is to appreciate every second.

ALS: A Love Story, by Caitlin Bellina

By Champions

This is my “ALS: A Love Story.” It’s about my husband, Matt Bellina.

I first me Matt in August of 2002 when we were both Virginia Tech. Matt thought I was a “drunk college girl” (I was not) and gave me dead flowers out of a dumpster. I couldn’t remember his name I was so flustered by this cute boy that I referred to him as “the hot one” for a week until we met up again.

Funny to think that’s how we started. Now, we have been in each other’s lives for over 15 years. Matt was officially diagnosed with ALS in April of 2014, so our family is coming up on four years of living with the disease.

Our life with ALS is made a little bit easier because of Matt’s inability to accept his diagnosis as a roadblock. He is very much in this fight, and mostly for others dealing with terminal illnesses, ALS and otherwise. Of course, his humor shines through most, lifting us all up when things don’t go according to plan in our day-to-day life. With ALS, that can happen quite a bit.

Before our diagnosis – Matt surprised me one night by having a friend drive him from campus to my townhouse. He crept under my window and started playing his harmonica until I came outside. And now, after our diagnosis – I have so many moments I cherish with Matt. Like when I come downstairs from putting Pax, our youngest son, to bed and see him cuddled up with our older boys, JP and Kip, reading a bedtime book, or discussing the day, or talking about God. It’s those times where Matt is just being a good dad to our boys, that really get me.

Matt is my heart. I do most everything in my life with his voice in the back of my head. If it’s something I know he wouldn’t be proud of, I know it’s not a good idea. I appreciate his understanding. I am not the easiest person to live with, but he sticks with me. He puts up with my moods and frustrations and still loves me, through it all.

On our first Valentine’s Day together, we promised not to get each other anything. I stayed true to that pact, and got him nothing. He made me a handmade card (I still have it), a giant balloon stuffed with fun things, and other trinkets. I looked like a chump. Let’s just say he’s the romantic in the family!

When it comes to ALS, everything in life becomes weird. Things you never thought you would do, are now every day occurrences. You have to laugh. and love. You have to love and grow together through it all, or you are going to fall apart. And for us, to live with this disease, that falling apart simply wasn’t an option.

 

 

Celebrate Love with Augie’s Quest this Month

By Champions

 

Here at Augie’s Quest, we’re gearing up for a heart-filled month – with many of our ALS champions offering up a little of their love for the cause.

We’ve themed February, “ALS: A Love Story.” Starting today, we’ll feature one “ALS: A Love Story” story across Augie’s Quest’s website, social media and email list – culminating with a new twist on Augie and Lynne’s story on Augie’s 60th birthday, February 15.

We’re focused on sharing our many ALS stories of love – moments of hope, support and comfort via friendships, marriages, family, caregivers, kids, grandkids, and of course, pets. We know these love stories are out there, despite this horrible disease – and felt it the perfect time of year to share that love with our entire community. And in doing so, together, we can help raise a little awareness and interest in this other side of ALS, one that we don’t often hear as much about.

Be sure to follow along on our social channels, share the stories with your personal networks, and get to know some awesome love stories from Boomer, Caitlin, Evan, Catherine, Bryan, Stacie and more.

And, we know many of you likely have your very own personal stories and experiences with love despite ALS, or in some cases because of ALS. Please join in and share yours, too!

So, will you join us in celebrating love this month?

Xoxo,

Augie & Lynne

 

Augie’s Quest Joins the #ALSPepperChallenge

By Champions

Augie’s Quest is proud to support the #ALSPepperChallenge!

The Challenge was initially started by NBA Writer Tom Haberstroh to support his mother Patty’s ALS diagnosis:

Participants are asked to eat a spicy pepper, or donate to ALS TDI (but ideally both!) Here’s Garth Brooks and Trisha Yearwood taking the Challenge!

Check out our friend Nancy O’Dell taking the Challenge, and shouting out Augie Nieto on Entertainment Tonight!

Join us and take the #ALSPepperChallenge, because ALS is not an incurable disease, only an underfunded one – so support the Haberstrohs, Augie’s Quest, and ALS TDI!

Donate Here!

 

ALS won’t stop and neither will Augie’s Quest

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