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.

 

 

A Veteran Talks

“Hey kid, the good days will always outnumber the bad,” he said to me with a kind smile and wink. We were sitting side by side in the infusion center at Massachusetts General Hospital receiving therapy back in early 2002. Bill and I were on the same treatment rotation and had become friends. He had been front and center during the Cuban missile crisis in the Navy. I was currently on active duty as a Navy Nurse in CT. He was receiving the treatment appropriate for his neuro muscular condition. I was receiving it on the slim chance it would help, since one of my lab values was unusual when all other evidence pointed directly to the inescapable ALS. I was 26 years old, scared about the future, sitting next to my fellow veteran, and found his words were of great comfort to me.

Eighteen years later, I find that the good days have always outnumbered the bad and I suspect it will continue to be this way. The bad days have included the shattered dream of having children of my own as my siblings and friends continued “normal life.” The bad days also included the end of a young marriage in a bitter divorce. But, as you know, ALS is relentless in breaking bodies and hearts.

Today, we all find ourselves in unprecedented, turbulent times. This can be very unnerving, especially, when combined with ALS. My partner and I went into strict isolation in mid-March and spent three months together 24/7 as he was my only caregiver. We struggled through the social isolation, my guilt about depending completely on him and figured out how to settle into a new type of lifestyle. Our days now have a simpler rhythm. Watching flowers blossom is a big treat! The garage is not for my van anymore. It is set up for socializing with neighbors and family at a safe distance complete with a screen tent, carpet, lawn chairs and flower pots to line the entrance!

During these turbulent, changing times, I have some good news to share. My partner, Leif, and I got engaged a few weeks ago and are planning a very small ceremony October 3^rd! WHAT??  Who marries a 44 year old woman who has ALS? Evidently, Leif does. We have been living together for eight years and he figured if we could be together 24/7 for three months and still like each other, we might as well give marriage a shot.

I pray that as we all find new paths forward, excavating our former lives, positive things will surface. I am pleased to learn that ALS clinical trials have used the past few months to pivot how trials are run. They are now maximizing the use of video appointments to gather information and reduce in person visits. The field has also shifted to investigating breathing measurements that can be taken at home and doing safety labs locally. These changes bring the possibility of including more people in ALS trials by reducing some of the barriers.

We will all continue to have bad days. Life is just like that. My wish for you is that your good days always outnumber the bad. Keep your heads up and seek out the positive.

Sending my love from NH,

Ellen Corindia

 

There are dozens of country songs that talk about the love between a little girl and father. I danced with my dad to one of those songs, I Loved Her First by Heartland, at my wedding 13 years ago. Though, to be honest, I was dancing on his feet every chance I had since I took my first steps. When I was a young girl my dad was my Prince Charming. He taught me to fish, to ride a bike, to shoot, and to drive a car. He would take the red eye home from his business trips to ensure he was at every sporting event and he never missed an important family moment. While my mother, my brothers, and my three children (ages 8, 5, & 2) are his whole world, I will always be his baby girl.

My dad, Jesse A. Cox, was born October 28^th, 1948. While growing up, Dad and his siblings didn’t have much. However, with the love and care my grandparents showed them, they knew no different. After high school, Dad attended junior college, enlisted in the Army Reserve and became a Green Beret. He went on to serve active duty, jumping out of perfectly good planes while taking up body building. To this day, fitness is still important to Dad. After the military he worked at Morton Plant Hospital in Clearwater, FL as an assistant to an orthopedic surgeon. My favorite story from that time revolves around a candy striper that the nurses introduced him to. That spunky, adorable brunette was none other than my mom, or as Dad calls her, Precious!

November 13th, 1976 my dad’s life took an unexpected turn when he was involved in a horrific accident. While mowing the lawn on a friend’s property, a tree collapsed on him and crushed his spine. He endured major back surgery and needed rods and a body cast to support his recovery. Not knowing if he would ever fully recover or even be able to walk again, his perspective on life and his future quickly became clear. In 1978, after seven years of dating, he married the girl of his dreams, Debra Russo. Soon after saying “I do” this duo became a trio. In December of 1979 I was born, followed by my two baby brothers, Garret in 1983 and Clay in 1985, completing the Cox family of 5.

Dad always stressed the importance of education, hard work, and perseverance to follow our goals and dreams. The same day our family celebrated my high school senior prom, we celebrated my dad’s graduation from Shorter College with a bachelor’s degree in business. He showed us that no matter our age, we should never stop learning and growing.  My brothers and I have cultivated our careers with these lessons in mind. Garrett is now a member of the football coaching staff for the University of Tennessee. Clay pursued a career in the same field as his dad and recently launched his own distribution company, Pioneer Machine Sales. Similar to my dad, I work in sales and corporate procurement contracts, while working alongside my husband, Nick, to run our Atlanta based gyms/business, BTB Fitness.

Throughout his 35-year career in the machine and tool industry, Dad led by example. His positivity is contagious, his advice heartfelt, and he has always worked with the highest professional and personal values. He has earned the respect and admiration of his colleagues, many of whom he calls friends. As much as he loved his career, he could not have been more excited to announce his retirement one day after his 70^th birthday. He looked forward to spending more time with his family. This was a time for JJ (as my kids affectionately call him), to travel, to fish, to go boating, to spend more time with his grandkids, and to share his golden years with the people he loves. My parents raised their kids, lovingly and selflessly taken care of their four aging parents, and they even shared their home with two parents for twelve years, becoming empty nesters only recently.

I cherish watching the love and bonds between my dad and my kids deepen. When each of them started to talk, Dad would asked them “Who loves you?”. The first answer out of their mouths (with a little prodding) was… JJ! Now it doesn’t matter who asks them that question, they always say JJ first. He has taught them how to fish and how to ride bikes. The girls share his love for Hallmark movies, dancing, fishing, walks/working out, dominoes, oatmeal raisin cookies, reading, and they love convincing him to watch their favorite Disney movies. He has taught Guy, my son, to flex his muscles and throw a ball. His love for them is beautiful, pure, and just one more side of my dad I hold dear.

Never did our family anticipate that just nine months after retirement, our dad would receive a devasting diagnosis. In early 2019, Dad noticed changes with the grip in his right hand. His workouts seemed different, and he experienced some loss of strength. Initially we thought these changes were symptoms of Dupuytren’s contracture mixed with nerve damage and arthritis from his back injury, but something still wasn’t right. He noticed that his right bicep was no longer the same size as his left.  His muscle mass had deteriorated substantially.

Soon after a fishing trip in May of 2019, my dad visited his primary care physician hoping to get a referral to a hand specialist. Instead his physician referred him to a neurologist, who he saw less than 4 weeks later. Never will I forget the call I received from my mom after his appointment. I was sitting at my kitchen counter and my first thought after she shared my dad’s diagnosis was that his neurologist had to be wrong! We needed to get a second opinion as soon as possible. That second opinion and subsequent tests confirmed that Dad indeed had ALS.

So here we are. We have embarked on our new journey. We are coming to terms with our new reality. Our family came up with a plan to fight the disease and to do what our family does best – support each other, lift each other up, and be the rock for our dad in the same way he has always been for us. We researched the disease extensively and immersed ourselves in all we need to know in order to be prepared to face the future with ALS as a part of our lives.

We have all experienced so many different emotions. I’ll admit this includes a bit of denial. At first my dad had the mind-set that his diagnosis was a death sentence and honestly, who could blame him? However, there were many comforting phone calls between our family and friends, and a lot of praying. One of those calls was from a dear friend who gave him inspiration, advice, and assured him he should continue to enjoy life while living with ALS. A few days later Dad shared with my mom that he was thankful for their life together and thankful knowing that their future still holds great things. He made the decision to be proactive and to fight the disease. He will not let ALS take his spirit. He will continue to work out, walk, keep a healthy diet, work to keep his weight on, enjoy life, and pray his body keeps up with his drive. It was around this time that we took the fortunate step of calling a friend we met several years ago who has since become involved in this field. This is when we first learned about Augie’s Quest.

Dad, now almost 72 years young, has not quit. He never backs down from a challenge, and it’s no different with his ALS diagnosis. He met with the top three ALS doctors in the country and he continues to read research and fight this disease. Despite it all, the disease has progressed quicker than we hoped it would and Dad’s daily life is becoming more challenging. His body is slowing down, eating is tough, he continues to lose muscle mass and swallowing is a task. He can no longer fish or drive, and he is slowly losing his independence. Dad was naturally doing all these things with ease at this time last year, and now he is humbly asking for help. We are especially fortunate to have my mom as our matriarch, not only as she continues to support my dad during every step of this journey, but also because she was the lead Speech Pathologist for Gwinnett County’s (GA) Preschool programs over the past 20 years, experience that has and will continue to benefit my family and the community.

My parents witnessed my grandparents collectively endure the need for a feeding tube, the need for oxygen, a massive stroke, and being wheelchair bound. We couldn’t have imagined that Dad would experience a comparably painful journey. We pray daily that we are one day closer to a cure, a step that is imperative to the ALS community. The families we’ve met have shared their stories, beautiful and yet heartbreaking; many have lost loved ones to ALS. Many have family members who are struggling with the disease, like my dad, but still have so much hope and life left to live.

We must fast track treatments, accelerate the platform trials, and use our voices to advocate for our loved ones because a cure is needed, and it is needed now! Spread the word, keep our families in your prayers and please, donate to Augie’s Quest. Help them continue the crucial work they are doing in pursuit of a cure for ALS.  My dad, like all ALS patients, deserves a better quality of life. He deserves to live pain free, not need to rely on medical devices to perform the most basic of daily activities.

During my childhood my parents were united, truly a dynamic duo. Although things weren’t always easy, they made it look like they were. Throughout their 41 years of marriage, they exemplified the generosity, goodness, love, faith, and strength that binds a family together. My husband and I work hard to pass on these values to our kids. This Father’s Day is another day during which our family will sit in awe of Dad, knowing just how lucky we are to be together and how lucky my kids are to have their JJ. He is simply the best father and grandfather we could have asked for.

Sugarland is another country music duo my dad and I love. There is a special Sugarland song I proudly sing to him when we drive together. I’ll never stop singing to you, Dad. We love you to the moon and back. You’ve got this!

Love your baby girl,

Lindsay

 

 

Six years ago, our family boarded a high speed train and we were transported to a destination we did not choose.   Our son Matt had just turned 30 and he was diagnosed with ALS, the “mother-of-all terminal illnesses”.   We were unprepared for this trip.  We had no itinerary, no luggage, no roadmaps, no idea where or how long we would stay at “Destination ALS”.   This relentless ALS train never misses it’s schedule.  It arrives at the same destination every day.  When the doors open, on average, 16 -20 U.S.  families get off the train, totally unprepared for what lies ahead.

Over the years I’ve learned a lot about the disease and about the people living alongside us in the ALS Community.   We are all scrambling, digging deep into our “baggage”, to find the tools to help navigate a complex and scary landscape while we focus on caring for our loved ones living with ALS, surrounding them with love, care, and making joyful memories with family and friends.

Traveling this journey with our family are some extraordinary people.

• People who are managing, working for and or supporting organizations/labs dedicated finding a therapy for ALS (Research).
• People dedicating their lives to changing the way government(s) and sponsors(pharma) accelerate therapies for ALS. (Regulatory).
• People who are dedicating their lives to creating awareness and/or friction in the ALS community; challenging the filters through which ALS treatments, care and research have been viewed for over a century (Advocacy).
• People managing, working for and/or supporting organizations that provide care for patients and caregivers as we navigate the many challenges associated with the deterioration of our loved ones (Care)

Matt set the bar high for our family’s advocacy work and we are richer for the experience.  Our family has lobbied elected representatives, walking/rolling miles and miles under the capitol building in DC. We actively participated in “how a bill becomes a law” with the Right To Try law.  We meet with leaders at the FDA sharing our recommendations to increase the speed in which therapies are made available to the ALS community.  We’ve texted, emailed, tweeted and protested.   We’ve raised funds for care, research and advocacy by running, pub-crawling, biking,  zumba’ing, ice-dumping, polar plunging and volunteering ourselves to assist on the sidelines of many other events.  Despite our efforts, I always feel like we aren’t doing enough.

When I can, I muster up the courage to “greet the new arrivals on the ALS train when it pulls into the station”.   I check the platform first for the moms.  I’ll never forget how lost and frightened I was in those first few months after Matt’s diagnosis.   Six years in, I have some “lessons learned” to share.  I think of Fred Rogers when he said “look for the helpers. You will always find people who are helping”.   My goal is to connect the new arrivals with the helpers.  My goal is to help the helpers who are changing the trajectory of this disease.  My goal is to create a world where there is no longer a need for a train to stop at “destination ALS”.