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

Like a lot of busy moms, I was never much of a “plopper.” There was always something I needed to do, somewhere to go, somebody who needed something.  What I needed was more hours in the day!

In 2015, I was diagnosed with ALS.  Among many emotions and fears that surfaced, one of the most difficult for me involved our family’s annual one-week trip to a rustic camp in California’s beautiful Trinity Alps.  I have 35 years of memories of my sons swimming in the river, rafting, playing horseshoes, cards, and ping pong, riding bikes and sitting around the campfire, performing in the “talent” show, and all the special bonds that come from a week in the woods with family and dear friends.

At first, I wondered if I could go at all.  I hated the thought of being a burden, or getting in the way of the fun.  My husband, Paul, and my boys Marc, Luc, and Dan immediately responded: not going is not an option.  They figured out what I might need.  Paul arranged for me to have an ATV so I could move around camp with confidence.  We brought some special grab bars for our cabin and simple ramps so I wouldn’t have to worry about stairs. They then all did that thing that cannot be easily described:  They paid attention, and they made anything that was difficult for me easier by just lending a kind hand.

But last year one cherished Trinity activity looked like it was heading for my “unlikely” list:  There is a wonderful swimming hole where several families who come every year for the same week, bring the largest flotation crafts they can find (last year’s biggest was 16’ X 10’ with built-in loungers and ice chest). When the sun starts to dip every afternoon, a group of us moms launch a floating cocktail party.  We call it  “party island.” It’s an hour or two of sun, friends, laughs, and no worries.  It’s the definition of a simple pleasure.  But it involves, for a person with ALS, a not-so-simple climb down a steep gravel path and then rocky walk to the water, and then boarding the giant raft with some degree of . . . well,  I’m not sure “grace” describes even the most able-bodied person’s boarding style.  And last summer, that was not me, and did I mention there were at least a couple of dozen people lounging on the shore watching all this?

Undeterred, my husband and sons decided I was not going to miss out.  I swallowed all pride and let the boys carry me down the rocky hill and across the beach, and then they plopped me on the inflatable island.  Post-plop, I was exactly where I wanted to be:  floating with cherished girlfriends, remembering and laughing at all the memories of chasing toddlers around the shallows, worrying about sunscreen and naps and poison oak.

Now, my grown young men are taking care of me. It’s not easy.  But what a circle. What a life. What a lucky mom I am to have my three sons, my husband, and an army of loving, supportive friends and family who make sure I continue to enjoy the life I so love, even with ALS.

As Mothers Day approaches, I feel so much gratitude for my sons, my family, and my life.   I have learned that sometimes the secret to a special burst of happiness can be to just give in . . . and plop.

– Nancy Sallaberry

Dear Friends,

This month I am honored to write you this email on behalf of the Augie’s Quest Leadership Council. I am a husband, a veteran, a father of three small boys, and in April of 2014 I was diagnosed with ALS. I was only 30 years old.

I mentioned in my introduction that I am a veteran because it is extremely relevant in the battle against ALS.  Numerous studies have indicated that military veterans are at least two times more likely to develop ALS, than their civilian counterparts. While we still don’t understand the reason for the higher prevalence among service members and veterans, the cost and toll ALS takes — especially among this community — is devastating. For example,

• Since 2001, more veterans have been casualties of ALS, diagnosed with the disease, than overall casualties from the wars in Iraq and Afghanistan combined.

• The cost in ALS care to the U.S. taxpayers reaches nearly $450 million annually. The cost to the children, spouses and friends of those affected by ALS cannot be quantified in dollars and cents.

A couple of years ago when I was still mobile, I took my oldest son JP for a walk on a crisp Fall morning. He had just turned four and he was running circles around me.  Halfway through the walk he picked a white dandelion and blew on it. When I asked him what he wished for, his reply left me speechless, “Daddy, I wished that you would play football with me on my 18th birthday.”

As we approach Father’s Day, I am proud to be fighting alongside another father like Augie Nieto to help make my boys’ wishes come true.

Isn’t that what we try to do as fathers? Augie’s Quest is the key to making this wish a reality.

We have an obligation to do everything we can to defeat ALS because it is an unmanageable burden on our military, our veterans and our military families, but more importantly for the human cost to those who love us.

I am so grateful to all of you who feel the weight of this obligation and selflessly donate your time and money to move us closer to victory. God bless all of you and I hope you have a great Father’s Day.

Your Friend,

Matt Bellina