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…
Dear Santa, here’s my special wish list for the holiday season. I’m not asking for toys or special treats, just your help in making my holiday social events blend better with my life with ALS. Specifically, I’m hoping you can help me when I attend social gatherings, dine in…
I remember the first time my late husband, Jeff, fell as a result of ALS. Falls can be common with the disease, but I was still shocked each time one happened. When Jeff fell, it laid bare how ill qualified I felt to care for him, even while taking…
I’m a do-it-yourself kind of gal. This has served my husband, Todd, and I well over the last 14 years as I’ve been his primary caregiver. We do not have an ALS clinic near our home, and our local neurologist moved away years ago, so we don’t have medical…
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