I named my column “Living Well with ALS” for many reasons. The most important one was that each word in the title had a deep meaning for me. Six years ago, when Bionews, the parent company of this website, invited me to write a patient column for…
Columns
The summer and autumn of 2018 brought uncertain and scary moments for my late husband, Jeff, and me as he battled progressing symptoms of what would later be diagnosed as ALS. His symptoms had begun with the seemingly benign experience of foot drop, which was frustrating but not painful.
My husband, Todd, was diagnosed with ALS in June 2010. That winter, Todd and I, along with our 4-year-old daughter and 1-year-old son, visited my parents in Michigan’s Upper Peninsula. My dad had plowed snow into high banks, and on one large pile next to the house, he had…
In the field next to our home, a stand of more than 100 Fraser firs provide boughs for my wreath-making operation. It’s a good seasonal gig for me because it’s flexible. Since I take care of my husband, Todd, who is paralyzed due to ALS, I can’t work outside…
One of the things I cherished most about my late husband, Jeff, was his love of the holidays. From the year we began dating until our last Christmas, before he died from ALS in 2020, Jeff made the holidays special. During this season, he exuded a childlike glee that…
It’s been a rough season lately in terms of finding care for my husband, Todd. One of his long-term nighttime caregivers gave notice last summer about moving on. Not only did she work two nights per week, but she was also flexible enough to pick up additional shifts, even on…
Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why? During those months, even though I was adapting as best I could — such as…
Life at home with ALS becomes like “Groundhog Day,” the 1993 film starring Bill Murray, in which the main character, Phil, is stuck in a time loop and is forced to live the same day over and over. But there’s something in us that craves novelty, and Phil goes…
Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver…
As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.” There’s scientific evidence promoting the benefits of gratitude, so I try to practice it, but I get tired of counting my blessings…
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