By

Michael Mantz
This morning, I opened an email I wish had said something different. The subject line read: “FDA issues Complete Response Letter for Biohaven’s VYGLXIA (troriluzole).” Read Here In short, it wasn’t approved. For most people, that headline might scroll by unnoticed. But for those of us living with Ataxia, or part of the early access...
We live in a world that celebrates extremes. Scroll through social media and you’ll see dramatic before-and-after photos, stories of people climbing mountains against all odds, or ads promising overnight transformations. Those stories are inspiring, sure—but they also set a false expectation. They make it seem like progress has to be loud, obvious, and measurable...
Ever walk into a room and forget why you’re there? Now imagine that fog lasting all day. That’s what brain fog in Ataxia can feel like. I’ve been there. As my Spinocerebellar Ataxia (SCA) has progressed, these moments have become more frequent. It’s like starting the day with your headlights dimmed — you can still...
“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...
Nutrition doesn’t cure neurological disease, but it can change the trajectory of health. Adapted from Dr. Dale Bredesen, Alzheimer’s researcher That line stayed with me the first time I read it. Because here’s the truth: I know nutrition won’t cure Ataxia. But if the choices I make at the table can support my brain, improve...
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...
Ever have one of those days where just getting out of bed feels like running a marathon? I know that feeling all too well. There are mornings when I open my eyes and already know my energy tank is on empty. My head feels heavy, my balance is shaky, and every step feels like I’m...
When most people think about posture, they picture a parent or teacher telling them to “sit up straight.” Everyone knows it’s important, but we rarely consider it until pain, fatigue, or balance issues remind us. For those living with Ataxia, posture isn’t just about appearance—it’s about movement, safety, and strength. And I’ll be honest: posture...
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...
1 … 3 4 5 6 7 … 22

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.

More About Me

Follow Us



Follow this Blog via Email

Enter your email address to follow this blog and receive notifications of new posts by email.

Popular Post

apple watch - ataxia
Revolutionizing Ataxia Management: The Apple Watch Benefits
December 9, 2023
Degenerative Neurological Disease
You degenerate, you!
March 8, 2025
Cerebellar Ataxia - MIchaelmantz ataxia blogs
Introducing Anoushka Speville
October 10, 2023

Recent Post

Ataxia and Swallowing Difficulties, ,
Choking on Water: When Ataxia Affects Swallowing
November 10, 2026
Invisible Disabilities Week, ,
What You See Isn’t Always What Someone Is Living With
October 22, 2026
AQNEURSA FDA approval ataxia, ,
A Win for A-T Isn’t a Win for SCA15, But It Still Matters
October 6, 2026

My New Stories

Ataxia and Swallowing Difficulties
Invisible Disabilities Week
AQNEURSA FDA approval ataxia
International Ataxia Awareness Day
REM sleep behavior disorder vs sleepwalking
Gyropack for ataxia
occupational therapy for ataxia
Friedreich's ataxia research