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The Long Road to an ALS Diagnosis
ALS has one of the most complicated diagnostic processes leading to a long, traumatic road to diagnosis. The diagnostic process is almost more traumatizing than the diagnosis itself. If you’re scrolling Tik Tok’s or sitting in a Facebook group right now wondering if anyone else has experienced what you’re experiencing, this post is for you.…
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Why I Finally Said Yes to the Feeding Tube. And Why I Wish I Had Done It Sooner.
I finally said yes to a feeding tube nearly two years after my ALS diagnosis and seven months after graduating from hospice. And I am so thankful I did. Getting a PEG tube has been hands down one of the best decisions I’ve made for my quality of life. But I will be honest with…
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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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Normalize Talking About Death and Dying
Let’s talk about death and dying. On purpose. Out loud. At the dinner table. Because we all have two things in common. We were all born and we’ll all die. We’re all promised an end date, not one of us is promised tomorrow. Yet we spend our entire lives living as if we have forever.…
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5 Practical Ways to Help Your Loved One Newly Diagnosed With ALS
When someone you love is diagnosed with ALS… everything changes. Not just for the person diagnosed. But for you too. This diagnosis lands hard on everyone involved. There’s a moment where life splits into two parts: before the diagnosis… and everything after. And if you’re on the outside looking in, you’re probably asking yourself what…
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Don’t Wait to Do These 5 Things After Your ALS Diagnosis
It never gets easier hearing that someone else has joined this club that nobody wants to be a part of. Not only is this ALS diagosis the worst news you have ever received, but from this moment forward you’ll be making life or death decisions for the rest of your life. There was so much…
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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 