Guest Voice

Before my daughter, Marissa, was diagnosed with ALS in September 2022 at age 30, I was convinced that her symptoms could be attributed to anything except ALS. Denial made it hard to accept reality. Since then, my world has been turned upside down. Early in 2022, Marissa began experiencing…

I lost Mary Ann, my wife of 34 years, to ALS more than seven years ago. The last eight of those years with her were a medical odyssey. After developing neurologic symptoms in 2011, Mary Ann was diagnosed with Parkinson’s disease in February 2012. When other distinct…

When my father, Mickey, was diagnosed with amyotrophic lateral sclerosis (ALS), I was a sophomore in high school. Our world changed overnight. Like so many families, we were suddenly navigating a disease we barely understood — one that moves quickly and gives you very little time to adjust. We…

“I don’t want to go to the doctor,” I said. “What if it’s something bad?” “What are you afraid of? What’s the worst it could be?” my wife replied. “ALS …” That was the first time I said those three letters out loud — half joking, half hoping that…

As I cuddle my newborn granddaughter in my arms at the hospital, I murmur to her, telling her that she is perfect and I love her. I tell her about her aunts, uncles, and cousins who are excited to meet her. Despite the impact of bulbar-onset ALS on my…

The first few months after my husband, Craig, died from ALS in April 2022 were incredibly hard and a bit of a blur. I went through the motions, not really knowing or caring what I did. Once the relatives had gone, the funeral was over, and the house was…

So what happens now? All of a sudden, I was on my own, left to navigate my world, which had changed forever. I was restless, not quite knowing what to do with myself or how to fill my time. I’d just spent the last two years fully focused on my…

I was never a foodie. Never one to order the lobster gnocchi, a bone marrow rice bowl, or smoked mackerel wrapped in bacon. My preferences were always more pedestrian. Chicken nuggets and tater tots. Fast food hamburgers with a pile of stringy fries. Giant mall cinnamon buns as thick as…

Much of what people understand about ALS progression comes from the stories they see and hear most often — and those stories can be misleading. Social media amplifies the voices of people who have lived with the disease for years, sometimes decades. This makes perfect sense: Slower progression means…

Until recently, my language skills and speech were best buddies. They were happily and symbiotically entwined, each supporting the other with comfort and ease. Language — the software system — was the one with all the good ideas, reacting to the environment in milliseconds like a gleeful toddler and formulating…