Hoo-wee! Am I glad summer is over. Not because of any changes or challenges from my ALS, but because of a series of unexpected life events. This year, my summer months felt as if I were on an airplane that hit turbulence, and the “fasten your seat belt” sign…
ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story…
After college, I worked at an after-school youth program. I loved my work, and I made ends meet on my modest salary. I met and married my husband, Todd, who had a good job, so when we started a family, I decided to stay home with our children. I…
You might assume from reading my column over the past few years that I’m the model of positivity. I certainly try to be, but sometimes I’m not. Like many who live with ALS, I also have moments of frustration that open the door to me saying the…
Often, as we discuss the ravages of disease, we give short shrift to one of the most vital aspects of debilitating illnesses like ALS. We offer our sympathy, prayers, money, remedies, and sentiments, which are all very positive and appreciated. What’s missing, though? A little imagination and a broader…
This past weekend, my husband, Todd, coached our son, Isaac, in making and installing a shelf in our daughter’s bedroom. It was a corner shelf with an obtuse angle, so they had to measure the angle, cut the boards to fit, and join the two halves of the shelf together.
An email that landed in my inbox the other day made me sit up and take notice. It was from a dear friend who is a care services coordinator for the ALS Association of Wisconsin. She shared a link to an article about a recent study on mindfulness and…
After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded three minutes of his expression while sitting in our yard in the November cold, drawing on…
Last week at Walgreens, the cashier asked me if I got the senior discount. I’ve never been asked that before, but perhaps the stress of caring for my disabled husband has finally caught up to me. “How old do you need to be to be considered a senior?” I asked.
Does it matter what I choose to wear to my ALS medical appointments? I think it does, and my reasons might surprise you. Hopefully, once I explain myself, you’ll be convinced that what you wear will make a difference for you, too. Busy days, busy me In my pre-ALS…
