During my past 10 years of living with ALS, I’ve had to adapt to a lot of new normals. One of the most important has been learning to navigate what I call my “ALS time zone.” It represents the unique pace or rhythm of my day, versus the pace…
On Memorial Day, my mom, the kids, and I visited Lakeside Cemetery in Hancock, Michigan. My mom and the kids left in time to attend the Memorial Day service. I arrived late, just as it concluded, because I needed to help Todd in the bathroom and then…
A large part of successfully living with ALS is to face each challenge with a positive mindset and find workable solutions so I can continue to move forward with my life. Lately, a 4-by-6-inch piece of cloth — yes, a face mask — is putting me to the test. What’s…
A few years before my husband, Todd, was diagnosed with ALS, he baked a cake for a church fundraiser with one hand while our infant daughter slept on her stomach across his other forearm, her head cradled in his hand. It was impressive enough that he could make the traditional…
“Woke up, fell out of bed, dragged a comb across my head.” These are the first two lines of the bridge that Paul McCartney contributed to The Beatles’ song “A Day in the Life,” the…
Here’s a fun challenge. In the spirit of celebrating ALS Awareness Month, I invite you to play my A-L-S word game. It’s a simple game I created to help me cope with the stress and anxiety of being newly diagnosed with ALS. It goes along with the strategies…
As I waited for the postmaster to bring my package to the counter, I tried to think of what I had ordered. Nothing came to mind. He set the brown box on the counter and said, “Here you go,” through his fabric mask. The package, measuring about 12 inches by…
Donald Rumsfeld, the former U.S. Secretary of Defense, once stated at a Defense Department briefing in 2002 that, “There are known knowns. There are things we know that we know. There are known unknowns. That is to say, there are…
Did you know that rollators were invented nearly 40 years ago? A Swedish woman with polio added four wheels to her walker, and the idea was an instant success. Most of us who use a rollator don’t really care about its history. We’re just happy they exist to help…
For a couple years after my husband Todd’s ALS diagnosis, I sought companionship in books written by people with ALS or their spouses. I read half a dozen stories, trying to wrap my mind around how we would navigate the rocky, unfamiliar landscape of the life…
