We met online in January 2016 while living in different parts of California. After a couple of months of chatting, Eric took the plunge and got on a plane to fly down to Southern California, and it’s been great ever since! In November of 2016 Tavares moved up to Oakland and we finally had the chance to see each other all of the time instead of just on weekends. We adopted Bailey and Rocco in February 2018 to complete our family. We took a trip to Hawaii in April 2019 and Eric popped the question while watching the sunset on the beach. We’re so excited to spend the rest of our lives together.

As a child, I had a picture in my mind of what true love should look like. Inspired by the many fairytales I would read over and over, I thought love was easy and that finding your true love would be like one of those stories that ended with the prince sweeping the fair maiden off her feet and riding off into the sunset to live their happily ever after.

As a child of ALS, I learned a whole new definition of love. I saw an incredible love story unfold before my eyes as I watched my mom give every ounce of herself to caring for my stepdad. She became an extension of him, ensuring that he was able to live out his days on his terms. Her dedication to my stepdad’s care was inspiring. Her days were filled with caregiving tasks from the moment she woke up to the second she fell asleep at night, and she would do it again and again because she loved my stepdad that much. Seeing the daily acts of love between my parents opened my eyes to a new kind of fairy tale and taught me a very important lesson on what true love really was.

I learned that true love is loving each other when it gets hard, when you are giving more than your fair share, and when it is scary. When the worst case scenario becomes your reality and you still stand strong together, that is true love. When you are willing to give so much to your partner that it all but breaks you in half, but you still do it day after day, that is true love. When “until death do us part” starts knocking at your door and you stand by your love, holding his hand, that is true love. ALS took so much away from my parents, but the one thing that it couldn’t take away was their love and dedication to each other. I learned about a new kind of love as I watched them walk through an uncertain and scary chapter of their story together. I still believe in fairy tales and happily ever after, but I’ve learned that the real love story is written in the twists and turns that you never see coming.

-Mandi

The day before my infamous exam with the neuromuscular specialist, my wife, Jamie, broke down. I hadn’t seen this from her before. The cry ratio in our relationship is 20:1 in my favor. I’m the sensitive one. She’s the juggernaut. But on that day, she let me be the rock. And for that, I love her more than she knows.

I was scared too, but there’s something about being the “comforter” that gives you instant courage and conviction. As if the “comforted” can somehow sense your inauthenticity, you have to REALLY BELIEVE what you are saying. And so she got me through that brutal day of anticipation, by affording me the opportunity to insist that tomorrow was not going to be the beginning of the end for our dreams, rather, it would be “our finest hour.”

I had resigned myself to a death sentence. Jamie’s instinct, however, was to fight this. And for that, I love her more than she knows.

She saw us at the front lines of a war. A war that we never even knew existed. She saw us being leaders and motivating other newly diagnosed soldiers. She saw us living long lives with our two daughters and growing old together. She saw us living out a new dream, even greater than the one we had originally imagined. And then I started to believe. “Could that really be? Wouldn’t that be a great story!?”

I had been so focused on beating this disease and saying what needs to be said to those I love, that the person I love the most had been left to focus on everyone but herself.

I hate that about this part of the story. But it’s an important chapter because there would be zero chapters to read if it wasn’t for her optimism and hopeful attitude.

I’m he fighter you see before you BECAUSE of her. I love you, Jamie.

-Scott

On Valentine’s Day, Eric, know our love for you is ‘THIS BIG.’  You are loved and you have opened my eyes to life in a way that has forever changed me for the better.

ALS really softens you and makes you real. You find out what’s most important and realize living life to the fullest is that much more important. After Eric was diagnosed with ALS in November 2019, it was a loss until we embraced what we gained. We appreciate each other a lot more, and treasure the little moments with our kids.  We recently did a Disney trip and it was a blast.

That’s where we find the most romance-in the everyday joys of watching our young kids grow and learn. My favorite thing about this dreadful disease is the inner emotion that jumps out. Eric laughs a lot more and smiles at me, and also cries (he never used to cry at all). Our love story isn’t ‘hot’. In fact my husband loves our 3 year old so much he sleeps with him most nights making shadow finger puppets on the wall.  But I get to tuck them in together, and love these 3 beautiful souls, knowing that Eric and I created two of them!

When we first met, we traveled the world, and used to dance the night away to country music.  Now we just appreciate being home and like most ALS patients- a good rest (because little kids are exhausting with all the energy they have).

-Jen

When I met Christian at a friend’s birthday party as a teenager, the response hit me so hard I was no longer hungry and couldn’t concentrate.   When I was diagnosed soon after, he stayed and took care of me.  While ALS has accompanied me for half my life (over 16 years), my beautiful and positive boyfriend has as well.

Christian is not only my partner. He is my hairdresser, cook, beautician, housekeeper, shopping aid, and gardener.  He is my arms and legs, my buddy, my comforter, and my companion.  He understands me, supports me, and motivates me. His positive attitude and courage to take on any obstacle make it easier for me to remain an active and positive human being.

Christian is always looking for solutions, is always by my side and is my biggest and dearest helper. He is so attuned to me that sometimes I can even forget my disability.  I can still experience things that otherwise I could only dream of like a 5-week-road-trip though the U.S. He is patient, understanding, selfless, empathetic, kindhearted and the most helpful person I know.

He’s done this around the clock for years, alongside his full-time job.  I’d like to raise awareness for unpaid caregivers like Christian, who do their best every day to give people like me a life that contains as much autonomy and dignity as possible.

I am infinitely grateful to him.

-Bianca

Most New Year’s resolutions – I’m gonna lose weight, I’m gonna get in shape, I’m gonna travel more – have one theme in common. They’re about us. Us improving. Us looking better. Us upgrading the unique creature that is, well, us.

And there’s nothing wrong with that.

But this year, at a time when people seem to be on edge around the world, here’s a novel idea: make your resolution about helping somebody else.

I’ve seen the rewards this mindset can offer. As the founder and operator of an orphanage in Port Au Prince, Haiti, I oversee 52 children, children who have come from the most horrific of circumstances, being abandoned in the woods, being left to die at malnutrition clinics, losing their parents to earthquakes and hurricanes.

From the moment we take them into our orphanage, there is no thought about what they can do for us. Only what we can do for them. This thought process, month after month, year after year, eventually becomes permanent. And I find, each time I go to Haiti – which is every four weeks – that I not only slip into this mindset easily, but that I feel best about myself when I do.

My old college professor Morrie Schwartz – the “Morrie” of the book “Tuesdays With Morrie” – once said to me “giving is living.” He told me this while dying from ALS, Lou Gehrig’s disease. I was floored when he said it, because, I thought, why would a dying man say “giving” was the thing that made him feel most alive?

But it was. “Taking” held no interest for Morrie. His life force was amplified most when he was able to help someone through a problem, comfort someone in a time of need, offer a word of wisdom to a confused former student.

Giving is living. I’ve been told that some of you have read my new book “Finding Chika”, which details the story of a 5 year-old Haitian orphan whom my wife and I took in after the child was diagnosed with an incurable illness – and who, in two short years, through her humor, courage and very loud singing, made us a family in a way we never imagined.

It was the greatest example of the giving/living paradigm. Every day little Chika needed something from us. And every day, we felt so alive in helping to provide it.

It changed my approach to resolutions. Oh, sure, I’ll still want to lose weight, and get in better shape. But, truth be told, those are desires year round. Setting a new goal for the new year can be so rewarding if we start with saying “This year, I want to help…” There are so many places and people in need. Certainly

“Make Augie’s Quest Your Quest” is one of them.

Whatever you choose, if you resolve to give more deeply this year, I’m betting you’ll discover you live more deeply as well.  What’s a better equation than that?

   -Mitch Albom
Author of “Tuesdays With Morrie” and “Finding Chika”

“Doctors diagnose, nurses heal, and caregivers make sense of it all.” – Brett Lewis

In the initial months of the pandemic, the uncertainty of what felt safe dominated the minds of the world, and particularly, ALS caregivers – was it safe to go to the grocery store, to work, to bring in outside help to care for our loved-one? Without clear answers from health officials, individuals have needed to navigate these issues based on their own needs and comfort with risk-taking. The pressure to keep your loved one safe from the COVID-19 virus has been another responsibility fallen upon caregivers.

To my fellow caregivers: I see you. I feel you. You are the glue.

O.J. and I are sending love and light to all affected by ALS, COVID-19, and in need of support. Here at the Brigance Brigade Foundation, we know that our community is STRONGER TOGETHER.

I have been the primary caregiver of my husband, O.J. Brigance, since we received the news of his ALS diagnosis thirteen years ago. I have first-hand experience of the persistent worry and turbulent changes that this disease can bring to those it touches. During the COVID-19 pandemic, people living with ALS (PALS) and caregivers of those living with ALS (CALS) are yet again figuring out how to adjust to a new normal. This time, however, everyone around us is also experiencing similar feelings of grief, anxiety, isolation, and exhaustion that ALS caregivers so often face. For the first time in my lifetime, there is collective acknowledgement that we are ALL at risk.

When O.J. and I founded the Brigance Brigade Foundation (BBF) in 2008, we centered our mission around the needs of PALS in their daily lives. As with many diseases, many nonprofits focus on finding a cure. While we do commit a percentage of our budget to giving back to research, and are hopeful about the progress made, the reality is that PALS are dealing with real issues now. We have committed most of our programming to providing financial assistance for respite care, equipment not covered by insurance, and accessibility for PALS to live with ease and dignity.

As our organization has grown, while recognizing the urgency to equip, encourage, and empower people living with ALS, we knew we could not forget our community of caregivers. It has become increasingly apparent to us that CALS were an often overlooked population in the ALS community and need their own space, to ensure we can all service our PALS in the best way possible. Several years ago, we started the suite of programs called Chanda’s Caregiver Corner, that draws from my own life experiences. We are focused around building a community that supports each other through the tough realities of ALS (and now COVID-19), laughs together, shares resources, and prioritizes self-care. We truly “walk this walk” together.

Like so many experiencing this collective grief, I feel strongly that self-care is an imperative and non-negotiable. Taking the time to care for yourself is essential to combating any of the negative and draining feelings experienced during tough times. This summer, we began hosting weekly Caregiver Club video meetups, we all shared uncertainty regarding health and finances, feelings of isolation during stay-at-home orders, missing touch, and inability to have a productive or safe routine, for fear we would compromise our PALS.

Self-care does not need to be complicated. I am delighted to share a short list of tactics we used during Chanda’s Caregiver Corner programming to re-focus our energy and prioritize ourselves amidst a chaotic world:

• Take a few moments, before getting out of bed or going to sleep, to list 3 things you are grateful for. You can do this silently to yourself or start a gratitude journal as a reminder of the beauty in your life.
• Write post cards to people you love or miss.
• Enjoy a walk in nature. Stand barefoot on your lawn to feel grounded before you begin your day.
• Search YouTube for free, gentle yoga practice, body weight exercises, or high intensity workout – carve out a small space for yourself to move your body in a way that feels good to you.
• Participate in an online art class. You can also draw, scribble, paint, or color to instill a sense of creativity.
• Download a free meditation app to find stillness in your breath. Our favorite app, Calm, has guided mediations as short as 3 minutes for those new to meditation or those who are strapped for time by daily caregiving duties.
• Join the Brigance Brigade Foundation’s network of caregivers! We are evolving our programs and hope to be here for you on your caregiving journey!

The Brigance Brigade Foundation is a 501c3 nonprofit organization with mission to equip, encourage, and empower people living with ALS. For more information, or to get in touch with our staff, visit brigancebrigade.org

 

 

Daddy:

“There, I said it, ALS. Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease. I’ll always have a hard time spelling it, but when spelled out, it is a neurodegenerative disease that affects the nerve and muscle slowly for some, and more rapidly for others, to the point, most voluntary functions are eventually lost.

I’m going down memory lane today regarding the doctor’s appointment that put a name on the symptoms I was having that ended the barrage of tests. My wife had insisted upon coming with me so she could ask questions. Overcome with emotions, understandably for her, she couldn’t talk. Tears are how the heart speaks when our lips cannot describe how much we’ve been hurt. So, I began asking the questions I knew she would ask if she could. My stoic response was typical for me. Each of us responds differently. There is no prescribed way to handle devastating news- coping mechanisms sometimes fall short. I heard the sad and serious tone of my Neurosurgeon doctor who assisted in my journey of getting a correct diagnosis. I laughed and said, “At least I don’t have to have surgery.” However, after the doctor said that there was no cure, I was at peace that with man it may be impossible, but with God, all things are possible. I told my wife on the drive home that I didn’t have any less time than before the diagnosis. I respect my doctor, but I have a Second Opinion. I choose to believe the one who is my resurrection and life. I’m convinced He is ALS- Always Loving Simon.”

Daughter:

“I can remember it like it was yesterday. We had just pulled into the garage after an averagely-interesting day of school. My dad said he had something to tell me, and I stifled my excitement. “Maybe we’re going back to Hawaii!” I thought. If only I knew we’d be going on a much different, though equally beautiful and rare, journey. ALS. Amyotrophic Lateral Sclerosis. My dad named his diagnosis with a smile that gave me hope. “So when do you start treatment?” I asked. I knew we would fight this, and win. How could my strong, stubborn father do anything else? The wind was knocked out of my lungs when he shared that there was no cure. I began thinking of all the things he would miss. It was too much for me. Through my tears, I looked over at my dad and asked “So what do we do?!”

“We keep doing what we’ve been doing, we make a difference with every day we have, and we continue to do all we can while we can.“

What a profound thought. My body is not sick with ALS, but there are other things in my life that I have found to be paralyzing. What have I done to get out of my comfort zone lately? Are you doing all you can while you can? My dad’s spirit has inspired me to make lemonade out of lemons. When life knocks him down, he’ll turn it into a slip-n-slide. It’s a gift that I hope to practice and perfect. In the meantime, I am thankful that I have gotten to witness one of the most genuine and meaningful examples of courage, in him. His outlook on life is the rose-colored glass that helps me see my challenges as nothing more than a collection of adventures and giants to conquer. The game is rigged, you win every time you play.”

-Christopher and Kayla Simon

In 2019, when I set a goal to be the first person with ALS to do a marathon in all 50 states, I figured the disease progression would be the only thing stopping me. I never imagined a global pandemic would cancel all the races!

Let me back up and introduce myself…

I was diagnosed with ALS in 2014 at the age of 33. I went from the strongest I’d ever been, completing a half Ironman triathlon, to walking with a cane in just eight months.

People often ask what I felt at that moment when I heard ‘you have ALS,’ but I can’t separate it from the 19 months leading up to it. What started innocently enough with an index finger that wouldn’t extend while swimming laps morphed into hamstring tightness and slowing training times, and eventually left me sprawled out in the middle of an intersection in downtown DC, unable to get up. One year and six neurologists later, I finally knew what was wrong with me…and that I had no more time to waste.

We bought a recumbent trike so I could do one last sprint triathlon. (“Hell, we can cash in my 401k,” I thought). My best friend and I came in last by almost an hour, but it didn’t matter because more than 100 people stayed to cheer us in. That’s when I realized I could inspire people to appreciate what their bodies could do. I challenged my friends to take on a race that represented a challenge to them, and together with my foundation, we have raised $500,000 for ALS research.

Meanwhile, I kept riding my trike because I loved feeling the strength of my muscles. It reminded me I was still alive. Eventually, I did a half marathon, then a marathon. I added swimming, then Pilates, then respiratory muscle training.

When I reached my fifth anniversary with ALS – a milestone that only 20% of people reach – I wanted to set a big goal, to shake off the fear and embrace hope again. The biggest goal I could think of was a marathon in all 50 states, especially since then I was only at nine!

The journey has been even more rewarding than I ever expected. As a former urban planner, I love exploring new cities on my trike. I love being in the wide open spaces too, the forests, the mountains, looking out on the oceans. There are so many deeply kind people in our country, and that brings me hope for all of us.

I had 17 marathons planned for 2020 (crazy, I know, but we don’t know how long my health is going to hold out); I got to four before the coronavirus shut everything down. As disappointed as I was (especially since 30 friends were supposed to come with us to Alaska!), I recognized that so many people were suffering much worse and I focused on how much we had to be grateful for.

After stalking race websites all summer, we found the Bear Lake Marathon Trifecta in Idaho, Wyoming, and Utah. We drove from North Carolina with a car full of hand sanitizer, wipes and snacks. Turns out Bear Lake is nicknamed “Caribbean of the Rockies”: beautiful, clear turquoise water, ringed with mountains, where you can drive right up onto the sandy beach…amazing. And we never would have discovered it if not for the 3 races in 3 days.

I’m up to 20 races now with a few more planned for the fall. Regardless of if they happen or if I get to 50, I never forget how lucky and blessed I am. I have watched too many friends die from ALS, leaving their children, parents, spouses, and loved ones behind. They would give anything for more time; there was nothing they could do to keep ALS from stealing it. I race to honor them.

 

Even though my speech is slurred and I use a walker to get around, my purpose here is resolute. I will dedicate my life to raising money for ALS research so that – one day – no other family will have to go through the devastating journey that is ALS.

 

Be Brave,

Andrea

You always knew when he had something to hide or when you were moments away from the reveal of his latest practical joke. You knew because the devilish grin would start to creep across his face when you were about to discover his empty pistachio shells strewn about your perfectly clean living room or he locked into a prime target for a wet willy. He simply couldn’t help himself but smirk. Unfortunately, in the early 2010s, being unable to help himself became all too real. Manga was diagnosed in 2011, and in the summer of 2014, we lost that sweet smile to ALS.

 

Marco Paulo Santos, “Manga,” was a proud Brazilian, a stud water polo player, a role-model citizen, a loyal teammate, and a loving family member. Most incoming college freshmen don’t play in games during their first season of water polo in order to bulk up and prepare for NCAA level play. This is known as a redshirt year, yet Manga was named to the varsity team immediately. While his speed in the pool could be described as “adequate,” he was absolutely strong and smart enough to compete with guys who already had three years of experience. After winning an NCAA championship that freshman year in 2004, Manga was a team leader until he graduated and went on to play professionally overseas. While abroad, he noticed that his body wasn’t functioning like it should and cut his career short, opting to finish business school instead.

 

Despite his water polo success, Manga’s strongest traits shone brightest out of the water. He was passionate about helping others. He was always upbeat and positive (except when we’d learn some select four-letter words in Portuguese after a missed shot in the pool)! Manga and I spent a lot of time at the UCLA Blood and Platelet Center together. He was a constant donor, frequently maximizing the 24 annual platelet donation limit. While his teammates were enjoying an afternoon beer or two, Manga was spending those hours with needles in both arms donating life-saving platelets, plasma, and blood to kids suffering from cancer. I imagine the free movie passes for donations played only a small part in his decision to give platelets as often as he did. He and I saw one of the Saw franchise horror movies in theaters, and upon seeing that it was just the two of us in the huge cinema, I think I was more terrified of a signature Manga prank than anything Jigsaw was doing on the big screen.

 

The last time a lot of us saw him was in May of 2013 during a long weekend in Southern Florida. Several of his college teammates joined forces with his high school teammates and coach to scrimmage and practice a few times. Manga was beaming the entire weekend, seeing his old and new friends come together to compete and enjoy the sport he loved. Around this time he stopped walking, lost most use of his hands, and needed help getting dressed. Krsto, our teammate and Manga’s closest friend, was helping Manga ready himself for the day. After getting his shorts on, Krsto knelt down to tie Manga’s shoe. In a defining statement of his character, Manga told Krsto, “One day when you get sick, I’ll be the one to take care of you”.

 

The phone call I received on the day I found out about Manga’s ALS diagnosis was one of the most heart-wrenching of my life. After watching him battle for three years and lose that fight, I knew my life would be changed forever. I have seen first hand what this disease can do to a person and the challenges it brings to their loved ones. I want to participate in the fight for a cure. I wear an ALS wristband each day not only to help spread awareness of the disease but also to serve as a reminder to myself to live #MangaStrong. I want and need to do more to fight for those who have received these near-certain death sentences. That’s why I support organizations like Augie’s Quest. Manga would, and that’s all I need to know.