I’m weary after 13 years with the ALS of my husband, Todd. I started therapy in hopes that I’d get some help. At our first session, I told my therapist that I’d like homework, such as a journaling prompt. A couple sessions in, she pulled out…
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Swallowing. It’s such a simple thing for most to do. But swallowing can also be a scary maneuver, especially when it turns into an ALS symptom called dysphagia. I began experiencing it about four years after my initial ALS diagnosis. And because that was nine years ago,…
Back in middle school, I was taught that sound comprises three components: something to make the sound, something to transport the sound, and something to receive the sound. It’s been a while since I learned that, but I assume it’s still true. The principle reminds me of a related statement…
After my husband, Todd, was diagnosed with ALS, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with two small children? How would they cope with the loss of a parent? What would I do…
Yay, it’s October! Fall colors, pumpkin pie, Halloween, and my birthday month. Not only am I feeling “another year older, another year wiser,” I’m also grateful and appreciative that I’ve had 72 birthdays, even though I’m living with ALS. But reaching this particular milestone has me pondering the complicated…
One of our greatest sources of joy and normalcy when my late husband, Jeff, was living with ALS was getting out and about in the community. The more ALS seemed intent on changing our life, the more determined Jeff became to find ways around it. I was his…
When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to…
I have a vivid and beautiful memory from a few summers ago, as my late husband, Jeff, and I lived with his ALS. We were spending a day on the water, as we often did. Jeff had lost his voice and most of his ability to walk,…
Remember “MacGyver“? In this TV series from the 1980s and early ’90s, the titular secret agent always found himself in an untenable predicament and used whatever was around him to devise a solution. Whether it was a paper clip, a thumbtack, or a toothpick, MacGyver was able to…
A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could…
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