Tag: ALS progression
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ALS Is Not a One Size Fits All Disease
When I was diagnosed, I had no idea ALS was. More importantly, I didn’t realize this wasn’t a one-size-fits-all diagnosis that came with textbook treatments and understanding across the scope of healthcare. I’d heard of it once before when a friend’s husband was diagnosed but even then I didn’t understand the full weight of what…
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The Wheelchair I Didn’t Want That Changed My Life
Life in a wheelchair was never on my Bingo card. I used to run 5Ks on purpose… Hold that image for a moment because everything that follows makes more sense when you know who I was before all of this started. The Trip That Opened My Eyes Three months before my terminal ALS diagnosis I…
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The Hard Decisions to Make With ALS
Some of the hardest decisions you’ll ever make with ALS have nothing to do with bucket lists or goodbyes. They’re the quiet, deeply personal decisions about breathing support, nutrition, hospice and palliative care. And for those living in states or countries where Medical Aid in Dying is legal, that adds another layer of complexity to…
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What Is ALS? What I Wish I Knew About My Diagnosis
When I received my ALS diagnosis in January 2024, I had no idea what it was. Up to that point, I believed everything was figureoutable. Looking back, I’m actually grateful for that. I walked into that doctor’s office without a Google-fueled panic spiral. I hadn’t spent months or years believing I was dying but nobody…
Embracing the End 