A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…
Columns
Those crazy, runaway thoughts. When I was young, I used to have them all the time. That’s because I didn’t know the whole story about certain things, so my mind would invent the answers. While growing up, I learned the value of having all the facts, and my crazy…
“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with…
A couple years after my husband, Todd, was diagnosed with ALS, we moved to the Keweenaw Peninsula of Michigan to be near my parents. We had two small children at the time, so we’d explore the shores of Lake Superior for family outings. We spent time at McLain State…
Copying someone’s actions can be fun and help us learn new things. But imitation can also be dangerous, especially if you live with a serious condition such as ALS, which I have. I learned a lesson in imitation many years ago, while I was teaching a class in aerobic…
When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our…
Twelve years ago, my husband, Todd, and I installed bamboo flooring in three bedrooms and the living room of our new accessible home. Todd had been diagnosed with ALS two years before, and his arms had become quite weak. Contractors built most of the house, and a few volunteers…
Imagine you’re all alone, stranded on a remote island and surrounded by miles and miles of uncharted ocean. Here’s my question: How much time would you let pass before giving up hope of ever being rescued? One year? How about five years? Or are you an “I’ll never give up…
A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my…
I’ve previously written about sleeping and described how bedtime is one of my most anticipated periods of the day. In this column, I’d like to go a little deeper and get some feedback from other ALS patients. Do you remember the Julia Roberts movie “Sleeping with…
Recent Posts
- ALS Network webinar series to continue in 2026 with expert speakers
- ALS nerve damage can occur without TDP-43 protein clumps: Study
- Dealing with loss, both big and small, in life with ALS
- Scientists use fat-based ‘bubbles’ to sneak ALS treatment into the brain
- Guest Voice: ALS hasn’t stopped this go-to guy from showing up as ‘Dad’