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“The Slide and the Sea”

Lately it doesn’t feel like we’re stepping down with pauses to catch our breath. It feels more like we’re on a downhill ride—once the slope began, there haven’t been any flat spots, just a steady, unstoppable slide, faster than I’d like. And yet, even on this slope, there are moments that glimmer. We made it to the beach not long ago—time blurs these days, I can’t remember exactly when—but he got his fish and chips, the one thing he’d been craving. The salt in the air, the crash of the waves, his smile over that simple meal and watching our beautiful grandkids having a wonderful time…those are the memories I hold onto, the sparks of light as the paths grow steeper. 
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Weekend Diary 20th July 2025

How am I feeling? Tired but a  calm weekend overall, albeit we had the grandkids  How has husband been this weekend?  No new symptoms. Still sleepy but stable. Enjoyed a family roast and diversion of afternoon baking with the granddaughter for me ❤️
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Diary Entry: July 18, 2025

How I’m feeling today: I’ve been feeling anxious and worried. Today has been hard with so much uncertainty swirling in my mind. I keep wondering if my husband’s sleepiness is another TIA or a sign of his MSA progressing. It’s tough not knowing what to do next. How my husband is today: He’s been very sleepy and less responsive than usual, but non-specific — not showing clear new symptoms. He didn’t want a medical review today, which makes things feel more complicated. One small thing that went well: Even with the anxiety, I was able to stay calm enough to keep him comfortable and be there with him. One thing that was hard: Not knowing what’s happening and feeling the nurse in me wanting to push for more medical support, but also needing to respect his wishes. A moment I want to remember: The quiet moments sitting beside him, even when words felt unnecessary. Something I’m grateful for: A visit from our daughter-in-law and the grandchildren — such a lovely distraction and ...
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Why am I here?

  My name is Dee and I’m the full-time caregiver for my husband, who is living with Multiple System Atrophy (MSA). MSA is a difficult condition—one that brings daily challenges, emotional weight, and constant change. But it also brings moments of deep love, quiet resilience, and unexpected grace. I’ve decided to start writing this blog as both a personal outlet and a way to reach out to others going through similar experiences. Sometimes it’s hard to put everything into words, but I want to try. This space will be part diary, part reflection, and part reminder that we are not alone. I hope it gives me—and maybe you—something to hold onto when things feel heavy. Thank you for being here.
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