“Oh my, are you OK? Did you fall? Can I help you up?” Walking into the living room several years ago, my adult daughter was startled to find me on my hands and knees on the floor, huffing and puffing. Twisting to look in her direction, I replied, “Thanks, but…
Columns
When my late husband, Jeff, died of ALS in May 2020, I was awash in grief and lived in a world completely inhabited by memories. I obsessed over our every detail of our lives, large and small. Some thoughts were comforting and reminded me of our happy life together:…
I must use the privilege of this column to acknowledge the passing of one of our ALS heroes, Ady Barkan. A young, stalwart, and dedicated husband and father, Ady spent the final few years of his life fighting for those without adequate healthcare in this country. Ady…
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…
Have you ever really thought about time? What it is and what it means? When you take a deep dive into time, you’ll find there are two dominant stages: memories of the past and aspirations for the future. The present is the stage of doing, but it is divided…
One morning last week, I turned on my phone, but it powered down almost right away. I turned it back on and checked the battery. It was at 0% after being plugged in all night. I just had the battery replaced the previous week, and now the phone wouldn’t charge…
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…
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,…
I’m weary after 13 years with the ALS of my husband, Todd. I started therapy in hopes that I’d get some help. At our first session, I told my therapist that I’d like homework, such as a journaling prompt. A couple sessions in, she pulled out…
Swallowing. It’s such a simple thing for most to do. But swallowing can also be a scary maneuver, especially when it turns into an ALS symptom called dysphagia. I began experiencing it about four years after my initial ALS diagnosis. And because that was nine years ago,…
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