Columns

Can it be that we were cheering on athletes at the Olympics only a few months ago? Where did the summer go? Looking back, I realize I spent most of my summer and early fall months distracted by the hoopla of world and national events, and now I’m exhausted. I’m…

Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare and chronic diseases. Last week, I got on Cystic Fibrosis News Today to catch up…

Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his ALS and progressive disability. After Todd was diagnosed, we realized that we’d need to sell…

I collect drinking straws. Not just any old straws, mind you, but long, wide-barreled plastic straws. My assortment includes several unusual straws as well, and they all help me drink beverages with ease even though I have dysphagia, or difficulty swallowing — a symptom of ALS. As I wrote…

Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has been a side sleeper, and for years he had to be turned from side to side…

Hmmmmm. That’s what my body feels when it’s doing its “humming thing.” It’s an all-over buzzy sensation that I chalk up to being another quirky symptom of my ALS. It’s a feeling I’ve never mentioned during my ALS clinic visits, mainly because I want to keep the visit rolling along…

A few weeks after my late husband, Jeff, was diagnosed with ALS in 2018, we were sitting in our primary care doctor’s office to talk. We’d just received a second opinion confirming the diagnosis, and we were reeling. I remember how brutal the appointment felt for all three of us.

It’s hard for me to get away from home because I’m the primary caregiver for my husband, Todd, who has ALS. But I try to take daily walks in the fields and woods around our house, because nature feeds my soul. Last weekend, I managed to go to the…

One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect. At the time,…

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…