Before it had a name
Four generations of ALS in one family. Submitted by Brenda White.
May 26, 2026
During the last quarter of my senior year at the University of Evansville in 1984, I tried calling my parents at home. My hometown of Fort Wayne, Indiana, was on national news due to flooding, and I was worried. There was no answer. I called my older sister (I’m the youngest of four), who lived in another state. She knew our parents were visiting our sister in Ohio, but what she didn’t tell me was that Dad was there to see a neurologist. He’d been showing symptoms our local doctors couldn’t diagnose.
The OSU neurologist diagnosed bulbar ALS.
No one told me. A couple of weeks later, I went home at Easter break to surprise my parents, and they weren’t there. A neighbor told me Dad had been hospitalized with pneumonia, so I rushed to see him. That’s when Mom told me about the ALS diagnosis. I was shocked at how much he had declined since Christmas. He was so frail, and he could barely speak.
He was discharged while I was still home, able to walk with help for steadiness. I tried to learn everything I could about ALS. Dad was still walking in May and made it to my graduation. I had paused my job search at Easter, and after graduation, I came home to help Mom care for him. I started making funeral arrangements with her and took a temporary job at the hospital to stay close. Shortly before Memorial Day, he was hospitalized again.
He died on June 30th at 66 years old.
Mom lived to 94. But in her 80s, my sister in Ohio, the one who had helped get Dad diagnosed, was diagnosed with ALS herself in her early 60s. At first, doctors thought it was post-polio syndrome, since she’d had polio as a child. She died after a couple of years. At that time, no genes had been identified in ALS patients.
Fast forward to November 2022. My eldest sister, then 78, was diagnosed. She underwent DNA testing, and C9orf72 was identified. My other sister and I were then tested, and we both carry the gene.
My dad’s mother had been diagnosed with Multiple Sclerosis in the late 1950s and died before I was born in 1962. But years later, when I spoke with my eldest sister after her own diagnosis, and she described Grandma’s condition, we concluded she had ALS too.
All of this is why I’m All In.
