Columns

I Hate the Feeling of Knowing What’s Coming

I pleaded. I bargained. I threatened. But it was no use. My dog would not back away from the woods behind the shed, where he had been sprayed by a skunk just two weeks earlier. I was more panicked when he got skunked than I was now. I frantically searched…

It’s Been a Week of Voices and Progress

This past week was filled with voices. No, I wasn’t hearing voices in my head. But everything seemed to involve a voice. Let me explain. An action hero uses his voice I watched the newly released documentary “Val,” currently streaming on Amazon Prime Video. By the time the final…

Building a Care Team for the Marathon of ALS

Help has come and gone over the past decade since my husband, Todd, has had ALS. When it became too difficult to travel four hours away to an ALS clinic, Todd went to a local neurologist who managed his care. After a couple years, his neurologist left the area, and…

When Anger Manifests as Road Rage

Driving in our small town is usually pretty chill. People let each other in and don’t cut one another off. But right now, the roads are busier than normal. It’s construction season, and we have many out-of-town tourists. People come from big cities, where they live with more stress and…

I Treat My ALS Clinic Like an Olympic Challenge

Cue the heroic Olympic theme song, our competitor is ready to begin! As the timekeeper signals all onlookers to be silent, the athlete draws in a deep breath, then while slowly exhaling, counts out loud from one to 10. She successfully completes the task using just that single breath…

A Taste of the Past

When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become. ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies.

Brother, Can You Spare a Dime?

“Don’t the best of them bleed it out While the rest of them peter out? Truth or consequence, say it aloud Use that evidence, race it around There goes my hero Watch him as he goes There goes my hero He’s ordinary.” The lyrics of the Foo Fighters’ song…

Don’t Let ALS Define Who You Are

Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”…

The Many Challenges of Getting Out

Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most…

Time Travel With ALS: What If We Could?

I’ve been thinking about time travel after watching a couple movies with my husband, Todd, who has ALS. We enjoyed “About Time” during one of our date nights and “The Time Traveler’s Wife” during another. Both movies have subplots that involve love, marriage, and children. If time travel…