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…
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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,…
Back in middle school, I was taught that sound comprises three components: something to make the sound, something to transport the sound, and something to receive the sound. It’s been a while since I learned that, but I assume it’s still true. The principle reminds me of a related statement…
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…
One of our greatest sources of joy and normalcy when my late husband, Jeff, was living with ALS was getting out and about in the community. The more ALS seemed intent on changing our life, the more determined Jeff became to find ways around it. I was his…
When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to…
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