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.

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 15 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.

To support the Galentine’s you can do so here: https://www.generosity.com/…/help-bwayne-finish-his-record-…

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.

Being thankful is a beautiful means of allowing you to appreciate and embrace all that is truly precious in your life.  It is a gift to yourself, one which uniquely fosters genuine happiness and joy in the present moment.  It ought not to be solely a seasonal reflection but, rather, a constant presence in our hearts and minds.  Our inner solitude and serenity depends upon it.

I am a 47-year-old woman who is living with ALS, breathes with the assistance of a trach and ventilator, eats through a feeding tube, talks with a specialized computer, is nearly paralyzed and wheelchair-bound.  Much of my endeavors are accomplished using only the movements of my eyes, including writing this piece.  (Modern-day technology is amazing.)  One may look at me and feel nothing but pity, and many actually have.  They simply don’t see all that I am, all the blessings in my life, all that I am grateful for.

I am alive.
I love deeply and am loved equally in return.
I have a purpose and find profound meaning in life.
I am able to be of help and service to others and remain surprisingly productive.
I have the loving, unconditional support and care I need to survive.

The choice is ours to make.  Will we focus on what we don’t have and are unable to do, or will we value the blessings in our life and what we can yet still do?  Regardless of one’s circumstances, there’s always, absolutely always, something to be thankful for.  I challenge you to find those very things and hold them close to your heart.

Much love to you all.

Catherine Scott

#thankful

Howdy!

I’m honored to be writing y’all this month for Augie’s Quest. I vividly remember the first time I heard about Augie. It was a morning in late 2013 and I was getting ready for work. From the bathroom I could hear my wife crying. She called for me to come watch the Today Show where they were doing a story on Augie. I thought to myself, “that’s one resilient dude”, and I went on with my day.

Little did I know that just six months later, at the age of 36, I would be diagnosed with the same disease. I was the picture of health (ok besides my affinity for craft beer), ran my own music technology company, married to my high school sweetheart, and had two young daughters whom I adored. Now facing a diagnosis with an eighteen month life expectancy my doctor told me to get my affairs in order, like anyone knows what that even really means?

Almost four years later I sit here typing to you with my eyes, completely paralyzed while my nurse pours my lunch through a tube in my stomach. Even as I type that it sounds surreal. Despite my condition I’m busier than I’ve ever been. I’ve started a second career as a writer, both to raise awareness for ALS through my blog and for the Huffington Post, and as a fiction writer. I’m developing technology to enable people with disabilities more freedom, and raising two incredible kids.

ALS has taken a lot from me, too much to even begin to list. But it’s also given me a lot to live for. I look forward to watching my girls go off to college, to celebrate my 25th wedding anniversary, and to see the day where ALS isn’t a devastating terminal illness. I know that I’ll be around to see that day and I’ll spend every minute leading up to it trying to make the world a better place.

I don’t believe everything happens for a reason, things just happen and how you respond creates meaning. I do know that seeing Augie on TV that day left a profound impact on me. It showed me how perseverance, determination, and hope can prevail over whatever you’re facing. It also showed me that leading by example is the most important thing I could do, and I haven’t looked back since.

-Jay Smith

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

This is my ALS: A Love Story. It is about Hallie.

My love can only be for my partner and best friend Hallie.

As the saying goes, no one signs up for this, but she has been a rock through the intense adversity that is ALS. We have been together for 23 years, but through this experience our love has only deepened.

I try and find the words to thank her, but it is so difficult. What do you say to a person who sacrifices so much for you? When times are tough, I only want her. She is my security blanket.

My only hope is that someday I get better and I can begin to pay her back. As the song goes, “Did you ever know that you’re my hero?” I say that to her all the time. My beautiful hero, Hallie.

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

Cara and I met in 2002. Before we had kids, I dragged her on all sorts of crazy trips. Regular jaunts to Mexico, Nicaragua, Argentina, Europe… Small towns, hostels, huts on the beach, chicken buses, the works.

We got married in 2006 and knew we would have a lifetime of adventures ahead of us. I finally finished grad school and we moved to Columbia, SC to start our family. Mary Adair and James were born and a new chapter began. Then I somehow managed to get diagnosed with ALS in 2013. Cara was with me in the doctor’s office when we got the news. The diagnosis is hers as much as it is mine.

She pushes our family forward in spite of everything that ALS entails. We find new ways for the four of us to have adventures. For now, it means finding ones that are wheelchair accessible. Even that will change in the near future. We moved to Atlanta so we were somewhere where she would always have career options. We got season tickets to Atlanta United so the four of us had something else special to share. She found us a Disney cruise on to go on, and then jumped at the chance to tack on a US national team game on one end. One of the unexpected pleasures of these adventures is us for staying in the same room. Even if it means lights out at eight, waking up altogether is a special piece of the experience.

But in many ways, these discrete adventures are the easy part. You do your best to plan ahead and then roll the dice hoping that things work out. The hard part is the day-to-day. The physical workload that comes with one spouse being physically incapacitated. The mental stress of plotting a career and planning for your family’s future when you know how difficult the coming years will be. Knowing what the four of us will go through. Whether my progression continues to be steady but slow, or if it changes, the next five or 10 years will be impossibly difficult for each of us. She is no superhero. Nothing about this is easy or is something she is naturally programmed to do. She just does it. That is what’s required for our family. That is what it takes for us to still be focused on our little adventures.

When we were dating and she was in Boston and I was in North Carolina, we relished the idea of finally being in the same place and having simple moments on the couch. ALS is not easy on any of us. It is not fair. It only gets harder from here. But I still cherish those times. The moments to ourselves. I cherish our partnership. I cherish our relationship.

And through it all, through trips, through kids, through moves, through ALS, through adventures, she is my wife. I love her more and more each day.

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.

This is our ALS: A Love Story. It’s about us, my husband, O.J. And, it’s about my wife, Chanda.

From Chanda:

O.J. and I met in 1989; we married five years later. We love to laugh and have our inside jokes as husband and wife.

When I first went to visit him in Canada, he was playing for the BC Lions. To this day, that song — (I’ve Had) The Time of My Life – still plays in my mind when I think of that trip, and it continues to be “our song!” Canada was so beautiful. Never mind that he picked me up at the airport with the gas tank on “E” – we were literally on fumes. It was snowing and cold, but he was determined to get back across the Canadian border to get gas for the car. We had no money, we did nothing exciting on that trip, but it was still one of the very best trips together we have ever taken.

To this day, O.J. puts up with me. He lets me be me, whether he agrees with me or not. And he’s OK with that. He always has my back.

O.J. bought me a stuffed monkey last year that dances and it is my absolute favorite Valentine’s gift – it’s my favorite gift ever. It plays Bruno Mars’ Locked Out of Heaven and I’m going to get it out for every Valentine’s Day because I love it that much.

ALS has not stopped the love for us. Love is still love. It doesn’t stop our marriage, from honoring our vows, it also doesn’t stop us from disagreeing! It doesn’t stop us from being married, ALS or not, we are husband and wife.

From O.J.:

Knowing that our love is … being committed to each other regardless of whether we feel like it, helps me out immensely! To know that Chanda has my back gives me the courage to fight to make the most out of every day. Her strength is incredible.

There are always those little moments when we notice something at the same time, look at each other and just bust out laughing! The little inside jokes bring levity to daily life.
Though ALS has taken so much from us physically, the bond between Chanda and me is still strong because God is in the center of our marriage. That is what keeps us going day to day.

O.J. and Chanda Brigance are Co-Founders of the Brigance Brigade Foundation. Their mission is to equip, encourage, and empower people living with ALS and their families. Brigance Brigade Foundation compliments what other ALS organizations are doing, providing funding for medical equipment and respite care not covered by other resources. Its 5th Annual 5.7K Championship Event is Sunday, April 29th and there are virtual participation options – If you’re reading this, they challenge YOU to participate in the 5.7K Championship Event and support the Brigance Brigade Foundation’s fight against ALS.

www.brigancebrigade.org

www.facebook.com/brigancebrigade