Columns

“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on ALS. But that’s exactly how I felt last week when I pressed the submit button…

When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.

A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS. Over the years, I added…

For those of us living with ALS, every day can have a stressful event. The key, I believe, is to get through the event and, if possible, remember it later with humor. Even in a parking lot. “Let’s circle the parking lot one more time,” my agitated husband said.

ALS was first identified in 1869, though its symptoms were documented in medical literature as early as 1824. It’s intriguing that the sequence of the disease today is often similar, with initial symptoms followed by an actual diagnosis. It took four years to receive my…

My husband, Todd, woke to double vision after a week of severe headaches. He was discouraged because his vision was one thing he had left after 14 years of ALS taking most of his muscles. I scheduled an appointment for him to see an ophthalmologist on Monday of last…

Last week, my kids and I drove from Michigan’s Upper Peninsula to the Milwaukee area for spring break. I have many fond memories of living there with my husband, Todd, more than a decade ago, before he got ALS. It’s too difficult for him to travel now due to…

Adapt, adapt, adapt! Readers of this column know that’s one of my favorite mottos. I depend on it, especially because I live with ALS. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when…

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…

Last week I hit a milestone of sorts: my 35th ALS clinic visit. That’s not to say that medical appointments deserve the same recognition as birthdays or graduations, to be memorialized in a scrapbook. But because ALS has been a dominant part of my life for the past…