Columns

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…

When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…

I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…

Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From…

While living with ALS, I have days when I’m low in spirit and need something to lift me out of the doldrums. When this happens, two things help me: a visit from my daughter and some great music. Recently, I got both at the same time. What a…