While a bond of mutual affection can define friendship, the truest of friends share more than that. These types of friends are irreplaceable and more embedded in our lives and hearts than others. Deep friendship requires each friend to call upon the other for help and support, even in the…
Guest Voice
My husband crunches on his granola and sips his tea. I watch the rhythmic drip of my liquid “breakfast,” a bag of nutrition tethered to a feeding tube. We share the same couch as always, but the distance between our mornings has grown vast. I flash back to our…
When I was diagnosed with ALS, my first thought wasn’t about me. It was about my children. I’m a mother of six; one of my children has passed away, and today my family and I are building a new life in New York after moving from Puerto Rico. I wondered how I would…
When my late husband, Craig, was diagnosed with ALS, we were very naïve and didn’t really know much about the disease. ALS has since been in the media more, so now people have more of an appreciation of what it means to have it. The only thing we knew…
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…
by Lindsey Beard
Families Are Waiting. I Know Because Mine Did.
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…
Recent Posts
- Experimental treatment shows promise in patient with rare genetic form of ALS
- Measuring levels of toxic protein in blood may help diagnose ALS
- Despite being paralyzed by ALS, my husband doesn’t dwell on the disease
- From clothing to handwriting, I’m still adapting to ALS and cultural change
- Better cardiovascular health linked to lower ALS risk in large study