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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…

We’ve developed a dark sense of humor living with ALS

When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health. “Is Dad healthy?” “No. He has ALS.” The nurse glanced at her computer screen.

Why it’s vital for caregivers to set boundaries

My 13-year-old son and I started mountain biking a few summers ago during the pandemic. He quickly became a much more aggressive biker than me, tackling jumps and getting air while I try to keep my tires on the ground. He easily outpaces me, often waiting at trail…