I am Mandi Bailey

a family member of someone we've lost to ALS,
someone who cared for a person we've lost to ALS

Florida


My stepdad, Fred, was our person. He was my babies' hero, my protector and confidant, and the love of my mom’s life. We even had a saying in our family, “We don’t need anything, we have a Fred!”

My stepdad, Fred, was our person. He was my babies’ hero, my protector and confidant, and the love of my mom’s life. We even had a saying in our family, “We don’t need anything, we have a Fred!” He was a strong man with a soft heart. There wasn’t anything he wouldn’t do to help out. One day, our Fred started complaining about his shoulder. He was a landscaper and very active, so our first thought was that he had pulled something or pinched a nerve. Almost nothing can take down Superman, so we weren’t too concerned. Then I watched him read a book with my daughter one night, and I just knew. My strong, nimble stepdad could not turn the pages of a book. His thumb and fingers weren’t quite working right. I didn’t know what was happening, but I knew it was not good…whatever it was. After some prodding, we convinced my stepdad to see a doctor. Fred was a veteran and had access to great medical care, why not use it?

So he made appointment and was told to take magnesium supplements. His doctor was sure that he would be fine. After a short time he went back to see his doctor, as the supplements weren’t helping. The phone call I got after his appointment would change my entire life. My mom said that the doctor thought he had ALS. At the time, I thought it was great news. We had a name for what was wrong. I was sure that we just needed a few prescriptions and a plan of action, and our Superman would be back to saving the day before we knew it. I told my mom that we would figure this out and that Fred was tough, he could beat anything. After we finished talking, I did a quick google search and my happy bubble of blissful ignorance burst. 100% fatal. No cure. Those words stung. It didn’t seem possible.

Although the diagnosis was just presumptive, the disease continued to ravage my stepdad’s body relentlessly. Every day, my stepdad lost another piece of himself to the disease. This man, who had been fiercely independent and never asked for anything was now becoming more and more dependent on those around him. I’ve never seen anything move with such vengeance. It would take six months for the doctors to finally put the diagnosis on paper, but we already knew. There was no denying it. It was ALS. In the time it took to complete the tests and check the boxes, my stepdad would go from a vibrant man that was full of life to a frail, shadow of his former self. The progression was brutally quick. Within six months from symptom onset, he was bound to a wheelchair, dependent on my mother to bathe, feed, clothe, and care for him. I watched my mom take on the caregiving role and dedicate every ounce of her being to ensuring his needs were met. She lost herself in his care. We were fortunate to have a health care team at our local VA that was willing to learn with us and help us make the best of the situation.

Unfortunately, as fast as his team worked, ALS worked faster. Six short months after my stepdad’s diagnosis was confirmed he would be gone. My stepdad passed away on February 2, 2018…one year to the day that ALS was mentioned as a possibility. We barely had time to wrap our heads around what was happening before we had to say goodbye. Those 12 months were some of the hardest and most isolating months of my life. We spent our days worried about what the future would hold and bracing ourselves for the unavoidable changes that ALS would bring. It was a dark time for my family to say the least.

I remember sitting with my stepdad before he passed, holding his fragile hand and promising that I would continue fighting for him even after he was gone. I didn’t know how I would make that happen, but I knew I needed to find a way. Then one day, I stumbled across some tweets from a guy with with ALS. His name was Brian and he had ALS, too. I followed him on Twitter and soon became connected with a worldwide community of fighters, all working to raise awareness and find cures for the same disease that stole my stepdad from me. That feeling of loneliness had been replaced with a new feeling, something I hadn’t felt in a long time. I felt hopeful. I was hooked. Fast forward to a little over a year later…I am now a part of a growing movement to find cures for ALS.

I am a proud member of I Am ALS’s Community Outreach Team, Thank You Squad, Children of ALS Team, and Veteran’s Interest Team. I have found my community and a way to keep the promise I made to my stepdad. Having a community of people that “get it” has been healing and empowering, to say the least. The loss of my stepdad still weighs heavily on my heart, but knowing that I am part of the movement for change helps heal that hurt. With each step we make, a part of my broken heart heals. I know I can’t bring my stepdad back, but knowing that I could help to save other families from having to go through the same thing I did makes every bit of this fight to end ALS worth it.


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