My husband, Todd, and I were having a discussion with a visitor in which our guest told us about his back pain and trouble sleeping. “You know what you should do?” Todd began. “Instead of getting out of bed, hire nighttime help, and they can roll you to your side…
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ALS has changed the way I do everyday tasks. While I had to adopt some changes quickly — like giving up my driving privileges and no longer preparing meals — others crept in over time, like changes to the clothes I wear and my handwriting. What I found interesting,…
While a bond of mutual affection can define friendship, the truest of friends share more than that. These types of friends are irreplaceable and more embedded in our lives and hearts than others. Deep friendship requires each friend to call upon the other for help and support, even in the…
On a walk in the field near my home, I passed by fruit trees that my dad had planted for me in 2014, two years before his death. He dug holes with his backhoe, planted two cherry and three apple trees, and then fenced them in so deer wouldn’t ruin…
Fall has arrived, and the days are cooler here on Michigan’s Keweenaw Peninsula. The maples are showing hints of red, and we haven’t seen a ruby-throated hummingbird for a few weeks. I suspect they’ve all headed south for the winter. Last spring, we put decoy swans on the pond to…
Ever since my ALS symptoms first appeared, I’ve been trying to rebuild the trust I once had in my body — to trust that my leg will hold me, my foot will clear the floor, and my hand will do what I ask of it. Most of all, I…
My husband crunches on his granola and sips his tea. I watch the rhythmic drip of my liquid “breakfast,” a bag of nutrition tethered to a feeding tube. We share the same couch as always, but the distance between our mornings has grown vast. I flash back to our…
This morning my husband, Todd, asked me how many boxes of medical gloves we had left, so I took an inventory. We stock medium, large, and extra-large, because different caregivers prefer different sizes. “I think we need to order more large,” I said, “There’s four boxes left.” I paused as…
Every day, I remind myself: Today, I need to keep moving. Before my diagnosis of ALS, that was something I said to other people. As a wellness director, my job was to motivate others to bend, stretch, reach, and add movement into their daily lives. Now, the tables have…
When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, there were many unknowns. We didn’t know how fast or slow his progression would be. We didn’t know the course that ALS would take in his body, or when we would need interventions like a…
Recent Posts
- Experimental treatment shows promise in patient with rare genetic form of ALS
- Measuring levels of toxic protein in blood may help diagnose ALS
- Despite being paralyzed by ALS, my husband doesn’t dwell on the disease
- From clothing to handwriting, I’m still adapting to ALS and cultural change
- Better cardiovascular health linked to lower ALS risk in large study