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Living with ataxia
What actually changes in your life the day after someone becomes aware of it? I’ve been thinking about that question lately. International Ataxia Awareness Day is coming up, so many of us in the Ataxia community will spend the day doing exactly what the name suggests. We’ll share our stories and try to explain a...
Balance is one of those things you never really think about. Walking across a parking lot, stepping off a curb, and moving through a crowd… your body just handles it. Thousands of little adjustments are happening every minute, and they stay completely in the background. You don’t notice them because, honestly, you’ve never had a...
Every once in a while, someone in this community puts words to a feeling many of us carry but rarely articulate. Franke James is one of those people. Franke is a writer and author who also lives with idiopathic ataxia. When she shared this piece with me, it stayed with me. Not because it softens...
Neurological conditions: why sleep meds, supplements, and routines make “what works” a misleading question. Neurological conditions like ataxia make daily life unpredictable, especially when the same advice produces completely opposite results. Something that genuinely helps one person can quietly wreck another. Sleep meds are a good example. Supplements too. Routines, workouts, even lifestyle changes that...
“Oh no.” That’s all I had time to think as gravity took over. Time slowed in that way it did when you knew what was coming and there was nothing you could do to stop it. A millisecond stretched into forever, a slow-motion movie scene where the outcome was already written. I was six feet...
How do you stay hopeful for tomorrow without losing today? That’s a question I’ve asked myself more than once while living with Ataxia. Hope is always there — in research updates, in conversations with others in the rare disease community, in the quiet thought that maybe tomorrow will be better than today. But here’s the...
There’s a quiet strength in choosing your limits—and a louder courage in defending them. For those of us living with Ataxia or any rare condition, that choice isn’t optional. It’s essential. When you live with something invisible—something progressive, unpredictable, and essentially misunderstood- you become a translator. You constantly interpret your needs, gauge your limits, and...
Ever tried explaining why you can trip on flat ground, slur a word at dinner, and still feel ‘fine’? That’s Ataxia—unseen, misunderstood, and rarely simple to explain. Bringing it up isn’t simple, and it’s not something that slips easily into everyday conversation. For someone newly diagnosed—or even for those of us who’ve been living with...
When you’re navigating exercise with Ataxia, it’s not about perfection—it’s about possibility. Sometimes the smallest step in the right direction ends up being the biggest step of your life.— Naeem Callaway A few months ago, I asked my physical therapist something that had been on my mind for a while: “Is it possible to gain...
Part of the Resilient Voices series — honest stories and perspectives on living with Ataxia and beyond. What happens when someone in the spotlight shares exactly what no one expects? That’s what happened when Bachelor Australia alum Megan Marx opened up about living with a rare neurological condition called spinocerebellar ataxia (SCA6). At 33, she...
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My purpose

michael mantz
Life rarely goes as planned. This blog is about navigating what actually happens – major disruptions, health challenges, and the quieter work of figuring out who you are through all of it. I write from inside that process. I have Spinocerebellar Ataxia (SCA 15), a rare neurological condition that shapes my perspective but doesn’t define this space. Some articles are personal. Some are practical. All of them are honest.

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