Columns

I’ve recently started meeting with a therapist through telehealth to try to better cope with life as my husband’s caregiver. Todd is homebound now, so we have been more isolated, which is hard on my mental health. It’s stressful to always be on duty, ready to move an arm,…

Earlier this month, I played host to a two-week online event in the ALS News Today Forums: “Funny Moments: Finding Humor in ALS.” I was anxious about it and wondered if members would even bother to participate. Boy, was I wrong. But I’m getting ahead of myself. Let’s…

Last summer, a large limb on our old mountain ash died, and this spring, our teenage son cut it off, leaving only one limb coming out of the stump of a once beautiful tree. “Is it time to take it down?” I asked my husband, Todd. “I think so,” he…

My husband, Todd, and I just finished watching the TV series “Person of Interest,” about a type of super artificial intelligence (AI) that predicts crime. The series, which ran from 2011 to 2016, was prescient about current issues resulting from AI and mass surveillance. In the penultimate episode, one of…

I am always looking for ways to simplify my life and help my days go by a bit more smoothly. But when you live with ALS, like I do, there is always one extra thing to do, plan, or think about before you can even begin an activity. It’s…

Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with…

You don’t know what you don’t know. Sometimes I feel like we are flying blind. Maybe we are. Maybe because we live in a rural area and don’t have access to an ALS clinic, we are just figuring things out as we go. When my husband, Todd, was diagnosed…

The longer I live with ALS, the more I’m forced to learn about myself by constantly adjusting to my body’s limitations and learning how to pace my days. Lately, I’ve been taking lessons in how to thrive from a large, graceful houseplant on our back porch. We are both,…

I lost Mary Ann, my wife of 34 years, to ALS more than seven years ago. The last eight of those years with her were a medical odyssey. After developing neurologic symptoms in 2011, Mary Ann was diagnosed with Parkinson’s disease in February 2012. When other distinct…

As I prepared to shower my husband, Todd, who is paralyzed due to ALS, I asked his smart speaker to play “Hurt” by Johnny Cash, and after that finished, I asked it to play similar songs. As I shaved Todd’s head, a song I’d never heard before came…