Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years…
A few weeks ago, I visited the Paavola Wetlands Nature Area a few minutes from my home. A local group that meets monthly for prayer and reflection was at the preserve, and since they were in the neighborhood, I decided to stop by. I’d be able to get back quickly…
For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always…
One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that…
My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car hit his bicycle in 2010 and still suffered from orthopedic pain, preferred to relax. Whether at…
We had a whirlwind of activity this past Memorial Day weekend, with friends visiting from out of town. We had blue skies, sunshine, and warmer temperatures than usual. After a long winter and the slow unfolding of spring here in Michigan’s Keweenaw Peninsula, it felt like a gift.
My husband, Todd, hasn’t left our home since a dentist appointment last fall, and he hasn’t been to the park or attended an event in years. He doesn’t want to go out — his ALS progression has made being anywhere outside the house too uncomfortable to enjoy. He’s most…
I remember the emptiness I felt the first September after graduating from college. I’d been a student for 16 of my 21 years at that time, and the void of not going back to school at the end of summer was disconcerting. For some years after that, I quietly regarded…
I keep playing a new song by Bon Iver. Once my husband, Todd, who has ALS, is set up on his computer after breakfast, I turn my attention to household chores until he needs my help again. My new find, “There’s a Rhythmn” [sic], has a reflective,…
When my doctor told me that I had ALS, my reaction was like that of most newly diagnosed ALS patients. I felt a jumble of emotions and desperately wanted to let my friends and family know — but something held me back. Deep down I knew that when I…
