“What was I thinking?” The words boomeranged around my mind as I stood frozen in place under the hot Arizona sun. I was experiencing an ALS patient’s worst nightmare: being stuck with an expanse of sidewalk ahead of me, the same distance behind me, and absolutely zero energy in…
When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him during a transfer. I dreaded making a mistake with his feeding tube. I worried about his…
The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the…
I remember borrowing a coffee tumbler emblazoned with a Royal Caribbean cruise ship logo from my late husband, Jeff, while we were dating. I wanted to take my coffee home from a visit to his house, and he reluctantly handed it over, explaining that he and his brother Steve had…
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and…
Last week I visited my dermatologist for my annual skin exam and when it was over I left his office with a brand new perspective about my ALS. I’m quite diligent about my annual medical exams — eye exams, regular ALS clinic visits, dental care, and in this case,…
A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a boardwalk trail through the woods. My husband, Todd, was able to traverse this trail in McLain…
“Keep on moving!” That’s something I tell myself every day. Since I live with ALS, however, keeping myself moving is easier said than done — especially in the afternoon, when my energy drops and I slump deeper into my chair. Oh, my, it’d be so easy to just stay…
When I met my late husband, Jeff, we lived exactly 7 miles apart by car, our respective homes separated by the Potomac River just south of Washington, D.C. The bridge that crossed it nearest to our places featured a wide and safe bike lane that separated cyclists and pedestrians from…
Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…
