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Hi everyone, I recently read a touching story about Mark Desa, who lives outside Toronto, Canada.  Mark has ARCA1, or Autosomal Recessive Cerebellar Ataxia type 1, and he shared his journey with this rare condition. Mark’s childhood was filled with happiness and normalcy.  He was active in karate and weight training as he grew older....
Martha Strange’s journey with Parkinson’s disease led her to a point where her cherished activities, like playing with her granddaughter and enjoying a round of golf, seemed like distant memories. However, a consultation with neurosurgeon Dr. Guy McKhann at Columbia University Medical Center/NewYork-Presbyterian Hospital changed everything. Dr. McKhann suggested deep brain stimulation, a procedure designed...
Happiness is found in reconnecting with old friends. The memories flood your soul, making it smile. Unknown Life is a dynamic journey marked by constant change. As we navigate through various phases, our priorities, circumstances, and even our very selves evolve. One remarkable aspect that stands the test of time is the beauty of lifelong friendships. These connections...
The human voice is the organ of the soul. Henry Wadsworth Longfellow Communication is an essential part of our human connection. It enables us to express our thoughts, emotions, and desires. However, for those of us in the Ataxia community, speaking can present a unique set of challenges. Some days, I wake up and my tongue feels 10...
Step into my shoes and walk the life I’m living and if you get as far as I am……. just maybe, you will see how strong I really am. Unknown I’ve always liked this quote and more than ever, I feel it applies to my journey directly.  As if it were meant to happen, one...

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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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