Columns

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…

As much as I’d love to be perceived as an I’ve-got-it-all-figured-out sort of ALS patient, I’m not. I have to invent mental strategies all the time to help me navigate through my day. Lately, I’ve been easily distracted and not paying attention to what I’m doing. Only then will…

My late husband, Jeff, was diagnosed with ALS just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of ALS in July and his illness was confirmed in October, backed by a second opinion in November. Because there’s no definitive test for ALS,…

“Count your blessings.” “You need to be thankful for what you do have.” People often give silver-lining advice to those facing hard things, and I’ve been on the receiving end of it since my husband, Todd, was diagnosed with ALS. I’ve also found myself offering similar sentiments to people…

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…

Last week, after having my yearly mammogram, I got a call from the clinic. The nurse told me that the imaging had revealed a spot that was concerning. I needed to go back for a 3D mammogram and an ultrasound. After I got off the phone, my eyes filled with…

“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…

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…