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…
It takes courage to reach out to a complete stranger and ask for their help. I know, because I’m that stranger, and the ones seeking my help are people newly diagnosed with ALS. But the good thing is, we’re not strangers for long. That’s because I try to make…
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…
Among the many challenges I experienced during my early months with ALS was the eerie prophecy of a life expectancy of two to five years following diagnosis. Besides putting the brakes on all of my future hopes and dreams, it made my brain feel worthless. I’d ask myself,…
Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…
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