Last weekend, my husband, Todd, and I watched the movie “The Electrical Life of Louis Wain,” about an eccentric artist in Victorian England. Wain’s comical and endearing illustrations of cats changed people’s perceptions of them and led to them being more accepted as household pets. From the description,…
For most people, the holidays are a time of joy and good cheer, and an opportunity to get together with family and friends. But when living with ALS, social gatherings have the potential to add stress to an otherwise happy season. For anyone like me who has ALS-related…
My late husband, Jeff, had a motorized scooter that gave us the freedom to move and travel as his ALS progressed during the summer of 2019, our first full summer living with the condition. The scooter was one of the first things Jeff ordered from Amazon as his…
“Find the victory in this.” For nearly three decades, I’ve carried these five provocative words in my mind. Like my life, their meaning to me has evolved over time. I first heard them spoken at the funeral of a young woman, and the comment was directed to her 15-year-old son,…
I sometimes dream my husband, Todd, is calling for me at night. I wake and check the time. If it’s after 5 a.m., I know his nighttime caregiver has left, so I check on him to see if he needs to be turned, have a limb adjusted, or an itch…
A question I’m often asked by newly diagnosed ALS patients is, “What do you think is the one thing that helped you adjust so well to living with ALS?” My answer is always the same: There’s no one thing; it’s the synergy of many strategies and habits that have…
Looking back over the course of more than a decade of my husband, Todd, having ALS, I’m struck with how hard we worked to maintain some sense of normalcy, even after he was paralyzed. We joined a Bible study with a small group of people from our church, and we…
I must confess, whenever I’m in a crowded public place, I wear a face mask. Why? Because I’m a person living with ALS and doing everything I can to keep my immune system in tiptop shape. Plus, being the only person wearing a mask doesn’t bother me. In fact,…
When my late husband, Jeff, was diagnosed with ALS in October 2018, I remember the early, seemingly insurmountable feelings of fear and bewilderment. I remember understanding that we were out of our depth in a completely foreign world of symptoms, appointments, and terminology, layered with the unbelievable knowledge…
We had another close call last week. I was out mowing the fields while a nursing assistant was caring for my husband, Todd. She was one of his first caregivers after he lost his ability to walk and bathe himself due to ALS. At the time, Todd still…
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