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Emily Hadley

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November is National Family Caregivers Month – a rather poignant and on-point month to celebrate caregivers. Another hallmark of November is, of course, Thanksgiving and the month we tend to reflect on what we are most thankful for. It is only appropriate to celebrate these two together—caregiving and thanksgiving—for it is the caring and giving by friends and family for which I am most thankful.

My husband, Collin, was diagnosed with ALS four years ago at the age of 41. I was right in the middle of prime caregiving for our two kids (7 & 11 at the time), plus the frequent babies who were in our care awaiting adoption as we serve as foster care parent volunteers for Gladney, a local adoption agency. Caregiving of children is what I loved most. It came easy. It felt natural. It is why I chose a career in pediatric nursing. However, despite all my passion and training, nothing can really prepare you for being the caregiver of a spouse. When we said our vows and I pledged to love Collin in sickness and in health, I truly meant it, but never dreamed I would be called to act upon those vows at the age of 40.

Caregiving encompasses so much more than just the physical day-to-day care. Tasks of bathing, toileting, dressing, grooming, feeding, etc., comprise only one component of caregiving. It is important to consider the emotional, social, and spiritual aspects, as well.

These are the areas where our friends and family have played a huge part in caregiving. From the beginning, they have exhibited so much love and extended unbelievable support and care to our family. Things like organizing memory-making vacations and outings, scheduling regular guys night on the back patio, frequent lunch visits by Collin’s prior work colleagues once he was no longer employed, learning how to work the accessible van and breathing machine so Collin can go on an outing without me, lacing up sneakers to run a race pushing Collin in a neon “stroller” contraption, helping fundraise for ALS research, and the list goes on and on.

These actions have provided tremendous emotional and social caregiving. In addition, our pastor comes to the house regularly to lend spiritual care and our church family has demonstrated lots of care and concern for our entire family. And the ultimate sacrifice and example of love has been Collin’s dad relocating from CA to be with us in TX to be actively engrossed in all aspects of his caregiving.

As the season of thanksgiving is upon us, I feel especially grateful to have so many caregivers in our lives helping us navigate the ever-changing, always challenging ALS world. Whether they are involved in the daily grind of physical care, intentional social interactions, lending emotional support or engaged in prayer with and for us, I am convinced we have the best caregivers around. My heart is filled with gratitude.

~ Emily Hadley

Evan Lamberg

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I met Augie and Lynne in 2010. My friend John Ondrosik/Five for Fighting knew my dad had passed away from ALS in 1992, and for that reason alone, he felt I needed to meet Augie.

We met in an Upper West Side of Manhattan restaurant, Augie then using a wheelchair and just beginning to lose his ability to speak. But I understood exactly what he was saying, he had such a similar speech pattern to that of my dad’s. When my father had ALS, for lack of a better word, I had come to know that ALS accent so well.

It’s not hard to fall in love with Augie at hello. He’s a superhero of the most human kind. And so our friendship began.

This included a trip to the ALS Therapy Development Institute, meeting Dr. Steve Perrin and his incredible team of scientists, and many ALS mice. After that tour in Cambridge, I asked Dr. Perrin about the significance of all the data they were collecting and I remember him saying one thing that really struck me: “When we get to ‘X number’ of data points, we’ll cure ALS.”

And today, we’re getting closer and closer to hitting that mark because of Augie’s Quest.

This is a mission very close to my heart, as my family can attest to, having already suffered the brutal onslaught of this disease. My father was a classic ALS patient—two years and out.

Augie, on the other hand, wasn’t going down that easy. He’s managed to pick himself up to a higher level of humanity that I haven’t seen in most healthy people.

All of you know Augie is a complete force of nature—emotionally, intellectually, spiritually, physically and via his wicked sense of humor.

I am humbled and honored to be Augie’s Quest’s awardee, but I’m not here as this year’s ALS Champion. When I gave it some deep thought, that distinction of an ALS Champion belongs to Lynne Nieto and everyone who has cared for someone with ALS.

This includes my mother, who just turned 80 recently. She came up from Florida to celebrate the Tradition of Hope with us, and to see her son, as Jewish mothers do. She truly knows what it means to care for someone you love with ALS.

About a year ago, I hosted a private event and screening of ‘Augie,’ the documentary directed by James Keach and produced by Eric Carlson. As so many of you know, the film documents Augie’s battle with ALS as he searches for a cure using his business acumen.

“But at its heart, it’s a love story whose central characters have a will to live that we should all embrace,” as James Keach said.

At that screening I shared some opening remarks. For the fun of it, I put together a list of some of the greatest couples and greatest love stories of all time: Romeo and Juliet, Humphry Bogart and Lauren Bacall, Mark Antony and Cleopatra, Ronald and Nancy Reagan, John Lennon and Yoko Ono, Coretta Scott King and Dr. Martin Luther King… and even Beauty and the Beast, and of course Kermit the Frog and Miss Piggy.

So tonight, I’m adding Augie and Lynne Nieto to this elite list of the greatest couples and love stories the world will ever see.

As we all know, ALS is known as Lou Gehrig’s disease. So if Lou Gehrig was the pride of the Yankees, then Augie and Lynne are the pride of our hearts and souls.

Tim Shaw

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I swear, every August my body goes into preseason mode. Ok, well not so much my body anymore as much as my brain.

It’s understandable, I mean every August for 18 years I got myself ready for football season. I was 11 years old the first August I actually got to be a real football player. Some how I managed to play until I was 29, going into my seventh season in the NFL. That’s when my body made it clear it was done playing.

I was diagnosed with ALS 6 months later. I was only 30 years old, which I thought was young, but now more and more I hear about people fighting this battle even younger than me.

Last year, I found myself having to get ready for football season yet again because my old team, the Tennessee Titans, invited me to help out with their special teams and named me a captain for the season! They even signed me to their official roster for a day and designated me a “Titan for Life!”

I am pretty sure I was the only person with ALS to be on an active NFL roster post-ALS diagnosis, but thank God they didn’t put me out on the field or I would have hurt someone. Head Coach Mike Mularkey and General Manager Jon Robinson made sure I was still part of the family.

So, I spent the season studying film and trying to help the players improve. I even gave a few presentations to the team about upcoming opponents. I was on the sidelines for every game, home and away. It was awesome.

I don’t have to tell you how brutal this disease is, if you’re reading this, you probably know. From what I’ve seen, I’m thankful that I’m still moving, five years down the road. I battle every day to stay positive and do what I can. I have found that to be a big key for me… battling and staying positive. Each is vital to me in facing another day, in facing every day.

I believe that if God still puts breath in my body, then there’s still work for me to do. I trust that God will give me the strength I need.

The same is true for you—so don’t just sit there! Find something to fight for. Is that your family? Finding a Cure for ALS? Or inspiring a bunch of athletes and fans into finding a better version of themselves?

Whatever it is, get that positive attitude and go after it.

Things are different for me this year, compared to last year. I am using my wheelchair a lot more. My speech is tougher to understand. These things made me unsure about being around the Titans team again this season.

I don’t want people feeling sorry for me. But I found my reason to fight. I’m still here. There’s still more for me to do!

I go in to practice a couple times a week with a positive attitude. So what if I’m in my chair and most of them don’t understand me when I talk? And guess what? It’s good for them to have me around, and it’s good for me to be around my team.

Life is hard, but I can’t complain. I have a reason to fight and a positive attitude. Oh yeah, and it’s football season!

~ Tim Shaw

Andrea Lytle Peet

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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.

Boomer Wallace

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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.

Bryan Galentine

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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-…

Caitlin Bellina

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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.

Catherine Scott

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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

Jay Smith

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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

Jenny Gore Dwyer

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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 won’t stop and neither will Augie’s Quest

Augie’s Quest to Cure ALS
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