living with ALS

After I finished this holiday season’s wreath orders, I moved my wreath-making table out of the dining room back into the garage and put away extra pine cones, bows, and birch bark. The room felt spacious without the clutter, and I told my husband, Todd, “This reminds me of the…

A couple days ago, as I was dishing up our family dinner, I popped a piece of chicken in my mouth and accidentally aspirated, drawing a small piece of chicken or phlegm into my lungs. I tried to cough it up, but wasn’t getting it out. I winced and pounded…

Who knew that a malfunctioning office chair could actually be a helpful addition to my daily ALS-focused exercises? I certainly didn’t. But now that I’ve grown accustomed to its sneaky ways, I want to keep my chair just the way it is. I type on a laptop placed on…

In the “Barbie” movie, Stereotypical Barbie, played by Margot Robbie, is living her best day, every day, in Barbie Land. When Ken has a mishap at the beach, he is whisked off to a mobile medical clinic and heals within seconds. Everyone attends Barbie’s blowout party. All the…

Being told I had ALS felt as if a rug had suddenly been pulled out from under me. My world changed all at once, with no possibility of turning it back. That happened in 2010, and it was certainly a major curveball in my life. But I’ve been living…

People with amyotrophic lateral sclerosis (ALS) report significant changes in lifestyle after their diagnosis, but still have an acceptable quality of life and low stress levels, according to a survey conducted across nine European countries. When asked about new drug development, participants most commonly prioritized treatments that slow…

This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to be outdoors, making sure my orange Tim Lowrey Panel T-shirt was visible under my jacket,…

After my husband, Todd, was diagnosed with ALS, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with two small children? How would they cope with the loss of a parent? What would I do…

Yay, it’s October! Fall colors, pumpkin pie, Halloween, and my birthday month. Not only am I feeling “another year older, another year wiser,” I’m also grateful and appreciative that I’ve had 72 birthdays, even though I’m living with ALS. But reaching this particular milestone has me pondering the complicated…

Last week I felt sad. I had to unravel a knitting project that had consumed a good part of my summer. “What’s the big deal?” you might ask. Well, the big deal is that living with ALS has me feeling hypersensitive to time. How I spend my time…