“When she walks, she’s like a samba, That swings so cool and sways so gently, That when she passes, Each one she passes goes, ‘Ah.'” One day last month, if the “tall and tan and young and lovely” striking presence…
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Although I was smack in the middle of a vast parking lot and surrounded by a hundred strangers, I felt genuinely hopeful for the first time in a long, long while. I was in line for my first shot of the Moderna COVID-19 vaccine, so feelings of hesitancy and…
I gave up social media for Lent. Many Christians deny themselves some pleasure or refrain from a vice or a bad habit for a period of preparation and reflection in the weeks leading up to Easter. It seemed like a good time for me to take a break from my…
“Missed it by that much …” That was one of the catchphrases from the farcical spy situation comedy “Get Smart,” a Mel Brooks brainchild. Maxwell Smart, Agent 86, frequently uttered those…
I’ll admit that during my high school days, when our studies turned toward physics, I didn’t pay much attention. Gravity, the invisible force that keeps us on the ground and makes things fall, seemed so bo-ring. But in 2010, when I was diagnosed with ALS, the condition put me through…
Sometimes little things push me over the edge. One morning last week, I was already cranky because I had burnt the oatmeal. The smell followed me, lingering in my hair as I drove the kids to school. After I dropped them off, I stopped by a store on the way…
“‘Cause I got a peaceful, easy feelin’, And I know you won’t let me down, ‘Cause I’m already standin’ On the ground.” Those lyrics by Jack Tempchin, sung by the Eagles on their…
“Have you ever participated in clinical trials?” That’s a common question among ALS patients. What’s my standard answer? “It’s complicated. I’m participating in several studies, but even though I’d like to, I haven’t been in any clinical trials. I’m excluded because I’ve had ALS for too many years.” ‘What? Tell…
“I’m glad I got the chance to miss you,” I told my husband, Todd, when I got home after a day trip skiing with our children last week. Since Todd has ALS and I am his caregiver, we rarely spend time apart. Now that he is paralyzed, we don’t…
Last week, I stepped onto my soapbox (mine has special safety handrails) and voiced my opinion about an issue that’s been bugging me for several years. It’s a problem I share with about 7.5 million other people who have trouble using their voices and cannot get voice-activated devices to…
Recent Posts
- Mourning the loss of a leader, friend, and advocate for women with ALS
- Developer to test ALS therapy with help of Mass General’s MyMatch
- A story of a family’s loss offers guidance amid my grief with ALS
- MDA 2026: Insmed launches Phase 1 trial of INS1202 gene therapy for ALS
- Holding the line: Why I’d keep my ALS progression exactly as it is