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Champions

ALS: A Love Story, by Augie Nieto & Lynne Nieto

By Champions

This is my ALS: A Love Story. It is about my love, my rock, my wife, my partner-in-crime, and my Valentine, Lynne.

Lynne calls me her “freak of nature.” Who would ever think such a nickname could be such a term of endearment, and hold so much love? Hearing her say that makes me so proud to be her husband, her one and only freak of nature!

When we were diagnosed 13 years ago, I was in utter disbelief. “Shock” comes to mind. My biggest fear was to be a burden to my family and not wanting to rely on others. I hadn’t been eating, sleeping, or thinking clearly. I was merely existing.

Initially I was very angry about my diagnosis. As time went on, and my symptoms progressed, I had to increasingly rely upon others for most of my needs. Once I accepted that this was my fate, I began to see through different eyes! As I lived longer this acceptance turned into gratitude for those who were willing to help me – and that gratitude allowed me to have more empathy for those around me who willingly lived with me and my disease.

It took a while, but once I realized that those who stood by my side had “enlisted” and I was “drafted” in this war against ALS, all of my relationships took on a different meaning. Especially my relationship with Lynne. I now know about accepting help, relying on others, and being part of something greater than myself. This is the gift that my ALS has given me. It has allowed me to be a better friend, father and husband to Lynne.

Lynne’s role has morphed over the time of our ALS. When I was first diagnosed, Lynne took it upon herself to stay one step ahead of the disease and make sure things that I needed were in place before I actually needed them. This allowed me to stay focused on “Augie’s Quest” and raising funds to support the ALS TDI.

When I began to lose my ability to speak, Lynne started helping me out at our presentations around the country. Since completely losing my ability to speak, she is now my voice. More accurately, she has found her own voice. Lynne has never faltered in being by my side and supporting me. Our marriage has strengthened and our trust in one another has never been stronger. Today, I feel fortunate to know what unconditional love feels like, to have a love worth fighting for and one that would be a shame to lose.

There’s real joy in looking at the life Lynne and I have built together despite ALS. It’s also amazing to watch how lucky we’ve been in this disease, after 13 years, all that has happened. Seeing so much unfold that we never thought possible with a diagnosis of ALS – we’ve just celebrated the birth of our eighth grandchild. When we were first diagnosed, we believed those life moments would never happen. It’s the best gift.

It is Lynne and my hope that by putting our story out there, we can touch others who are going through difficult times, raise awareness and critical funding for effective treatments and an ultimate cure for ALS.

And this special Valentine’s Day, we thank each of our Augie’s Quest friends and ALS champions for sharing their unique ALS: A Love Story moments of love, too. In this ALS battle, we’ll take all the love, passion and fight we can get!

 

ALS: A Love Story, by Jeremy Best

By Champions

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.

ALS: A Love Story, by Stephen Finger

By Champions

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.

 

ALS: A Love Story – O.J. & Chanda’s

By Champions

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

 

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

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