Tag

Friedreich's ataxia
Living with ataxia presents a multitude of challenges beyond the physical realm, often overshadowed by the visible symptoms. In this candid narrative, Kate shares her profound impact of ataxia on mental health, shedding light on a facet of the condition that is frequently overlooked. The journey begins with the onset of symptoms during university years,...
Lily shares the lessons she’s learned from living with a disability. She discusses the challenges of physical limitations and the surprising wisdom and perspective she’s gained. Lily’s story is one of resilience, humility, and a commitment to personal growth. It reminds us that we can all learn by listening to others with similar stories. Lesson...
We pressure ourselves to fit into a particular ideal and be able to do certain things. For each of us, the standards vary. For the highly athletic person, perhaps it’s running X miles a day. For the average person who exercises, it may be the ability to lift X pounds on certain machines. For a NON-gym...
You can read Lily’s previous article HERE.After taking the new medicine called Skyclarys for Friedreich’s Ataxia for a little over one month, I can share some updates and observations. Like the condition itself, these meds affect each patient differently, and our experiences all vary. I haven’t noticed any changes to my balance and coordination, two...
Hi, friends. For those who struggle with standing, balancing, or walking due to illness and/or old age, daily minutiae can become a huge burden once the leg and hip muscles atrophy. Using the toilet, taking a shower, simply getting from point A to point B–every little obstacle is a mountain. While the progression of time or disease...
At age 16, I was diagnosed with a genetic neurological disorder called Friedreich’s Ataxia. I’d been experiencing symptoms since age 11 with no logical explanation up to then.  I staggered when I walked, I couldn’t carry a cup of water, and I dropped things a lot.  But little did I know that my body cells…….....
Living with a disability can feel like constantly adjusting to an unpredictable rhythm. One day, things might go smoothly, and the next, a slight movement or step can result in a fall that sends everything into chaos. For anyone with mobility challenges, the experience of falling is a constant companion. It impacts our physical well-being...
(North Carolina’s Emerging Writers, Z Publishing House, August 2018) My name is Lily, and I’m twenty-five years old.  Since I’m a recent college graduate, one might presume my mind is filled with dreams for the future and visions of a potential career. Or, particularly in the modern era, one might guess that I feel more...
Support dog are life-changing for disabled people lucky enough to have one – not just in the way most people think. Every year, for the last five years, I have led the ‘All About Ataxia’ workshop for newly diagnosed people at Ataxia UK’s National Conference. Amongst other things, we talk about support networks, and who...
Our kids are 10 and 5 this month. This is an update of a piece I wrote on how we made the difficult choice to become parents. My Wife and I had always wanted to have children together, we’d just never agreed exactly when. Parenthood is not for everyone, but having a family life is a...
1 2 3

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