Columns

My ALS prognosis affects how I wrestle with making decisions

Decisions, decisions. When did making health decisions become so challenging for me? Well, it began after I was diagnosed with ALS. Scheduling annual health screens and medical treatments became complex decisions. Even purchasing a new pair of sneakers came with specific considerations. ALS has created a whole…

On my birthday I had everything I wanted

A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…

Can automated technology — including AI — help with ALS?

For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the ALS community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS…

Reminiscing about our pre-ALS days brings joy

A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS. My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories…

The best cup of coffee I’ve ever had

Throughout our relationship, my late husband, Jeff, was the partner who most enjoyed taking care of people and things. He built wooden furniture and personal gifts, tended to flowers, and prepared meals from scratch. He got a great deal of satisfaction from going above and beyond for people. Jeff was…

Connections provide a sense of belonging in life with ALS

Eighteen years ago when expecting my daughter, I decided to become a stay-at-home mom. Mothering a newborn was a joyful season, but it was also exhausting and isolating. Another new mom in my community who’d experienced that same isolation after leaving the workforce started a family club that offered an…

How I’ve benefited from finding flow with my ALS

I’ll admit I often worry if I’m being productive with my time and spending it wisely. That’s always been important to me, but it intensified the day I was told I had ALS. That’s when I heard the words “average life expectancy of two to five years” and left…