Columns

I Am Savoring Our Limited Time as a Family

A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…

The Circle of Life from Motherhood to Caregiving

I thought my days of obsessively avoiding germs and examining poop would be over once my babies grew, but such is the circle of life now that my husband has ALS. When I was a brand-new mom, one of my biggest pet peeves was when strangers in a grocery store…

Listen! Can You Hear Me Now?

Living with ALS has taught me to adapt, adapt, and adapt. Because ALS symptoms tend to change, change, and change. And one of the symptoms I’ve been learning to adapt to is dysarthria, or losing the ability to speak. Dysarthria feels like having a bad case of laryngitis and…

We Need Allies to Fight This War

My son pointed to a plastic army man on the ottoman. “That guy is a sniper,” he said. “He’s taking everyone out.” He placed a soldier on top of others on the living room floor. “This army is using dead bodies to build a wall. In war, you have to…

My Success with Grab Bar Acrobatics

Whenever I’m out and about running errands, I’m aware of the possibility I’ll need to make a quick stop at, ahem, the public restroom. But though I have ALS and rely on a mobility scooter, it has never been a problem. That’s because I have a mental list of handicapped-accessible…

A New Paradigm for the Future of ALS

The new year arrived bearing good and bad news. The good news is that 2020 marks my 10th year of living with ALS and I’m still here! The bad news is that I still have ALS. And, gosh darn, I thought we’d have a cure by now. But we…

Learning the Rules for the Medicare Guessing Game

Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to…

Ordinary Outings Are Arduous with ALS

My Facebook friends post accomplishments like completing a 5K run. If I were to post my accomplishments, I would include taking my husband, Todd, to my daughter’s school concert. Going on a simple family outing with ALS can be challenging. With about 200 inches of snow falling annually, traveling is…