“It’s just one night. It’ll be fine,” my husband, Todd, said after his night caregiver contacted me late one evening to explain she was dealing with a family emergency. Todd is paralyzed from ALS and needs to be turned and have his limbs adjusted throughout the night. It was…
Sometimes we all need a little help deciding whether to do something. I know I certainly do. That’s when I rely on what I call my “ALS bumper stickers.” They’re the latest addition to my ALS stress toolkit. The toolkit is a collection of strategies I use to maintain…
Months after my husband, Todd, was diagnosed with ALS, our church’s worship leader asked us to participate in a Sunday morning service with “Cardboard Testimonies.” We watched an example on YouTube in which music played while people stood in front of the congregation and shared their stories. Presenters didn’t…
My husband is my primary caregiver. In fact, he’s been my only caregiver for the past 12 years that I’ve been living with ALS. That changed last week, when he needed medical tests that required an overnight stay in the hospital. That’s when we turned to a local home…
I remember those days when it was hard to get out of the house with our newborns. Two weeks after our daughter was born, my husband, Todd, and I celebrated Valentine’s Day with dinner at home. Todd bought jewelry for both Sara and me. Life has patterns and seasons, and…
There I was, just living each day and minding my own business. I was following all the guidelines from the U.S. Centers for Disease Control and Prevention and wearing a mask everywhere I went, when all of a sudden, BAM! The COVID-19 virus found me. What followed were…
Music had been a source of connection and mild contention early in my relationship with my husband, Todd, but it hadn’t been much of either since Todd became paralyzed due to ALS. Our first date was to an Alison Krauss & Union Station concert. Todd was new to Milwaukee…
My husband, Todd, has ALS and is paralyzed, so not only do I cook all the meals, but I also feed him. His meals are often rushed or delayed because I’m running our daughter, Sara, to dance practice or wherever else a busy 16-year-old needs to go. There…
One evening, I took my daily walk in the Nara Nature Park in Houghton, Michigan. As I made my way around a network of wooden boardwalks, through a marsh, and alongside a riverbank and lakeshore, I listened to a symphony of birds. I saw a few couples walking,…
Newly diagnosed ALS patients often contact me and ask what I eat, what I do, and how I’ve managed to continue living with ALS for the past 12 years. I explain that there isn’t a magic solution; it’s a combination of following our doctor’s guidelines and learning how to…
