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Changing Your Expectations While Living with ALS

Last week, I had several email exchanges with ALS patients who wrote about their feelings of anger because ALS had robbed them of the life they had planned to live. I certainly can relate. I felt exactly the same way after my diagnosis. I told them what had helped…

When You’re Unequipped for Difficulty

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is…

On Second Thought, You Can Keep the Change

“Ch-ch-ch-ch-changes (turn and face the strange), Ch-ch-changes, just gonna have to be a different man.” — David Bowie Many people dislike change, some to the point of fearing it. According to author and motivational speaker Scott Mautz, writing for Inc.com, “Overcoming a fear of change can be as…

Winning the Battle Against Daily Distractions

I love daily routines. For me, having a set of habits and to-do projects waiting to be tackled helps me feel grounded when the world’s events are in turmoil. And more importantly, daily routines keep my mind focused on things other than my ALS. What I don’t love are disruptions,…

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…