Tag

Emotional
When we think about mobility aids, we often overlook the emotional journey that accompanies their use. In her blog post, Elise explores this journey, reflecting on the stigma and internal struggles she faced before fully embracing the use of mobility aids.  This story resonates deeply with many of us who have felt hesitant or embarrassed...
In a heartfelt account shared by Jason Wolfer, we meet Chanda Huy, who is courageously navigating the challenges of a recent diagnosis of hereditary Spinocerebellar Ataxia.  Just a year ago, Chanda received this life-altering news, inherited from her father, which has profoundly impacted her daily life. Simple tasks that were once effortless for Chanda—like walking,...
Individually, we are one drop. Together, we are an ocean. Ryunosuke Satoro As a person with a lifelong movement disorder, I understand the challenges that we all face living with Ataxia.  We see the world differently than most!  But through the ups and downs, there’s a definite spirit of resilience.  We are all living our...
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....
Remember to breathe. It is after all, the secret of life. Gregory Maguire, A Lion Among Men Breathing is necessary for survival, but its power goes beyond that. Our physical and emotional health can be greatly impacted by the way we breathe. Becoming familiar with certain breathing methods can be especially helpful for those of us living...
In a poignant narrative shared by Alaysha’s mom and featured by the National Ataxia Foundation, we are offered a glimpse into the life of a courageous young girl battling ataxia-telangiectasia (A-T). Alaysha’s journey with ataxia began with uncertainties in infancy, leading to a general diagnosis of ataxia. Despite seeming to outgrow her wobbling, her symptoms...
Breaunna Hoffman’s story is one of resilience and adaptation in the face of life-altering challenges. Diagnosed with Friedrich Ataxia at just fifteen years old, her world shifted dramatically.  Previously an active teenager involved in sports and cheer, she faced the reality of a neuromuscular disorder that would gradually change her life. Despite the initial devastation...
Life is a dance. Mindfulness is witnessing that dance. Amit Ray In the first part, A Snapshot of My Journey, I described some of the challenges I have had. But now, let’s turn the focus to positive things. I have shared articles on here in the past about our mindset, being grateful, etc.   Yeah, the past...
Tom Lawson shares his touching story, “My Ataxia Story,” in which he discusses how receiving the diagnosis of Cerebellar Ataxia changed his life and how it affected him profoundly.  At 46 years old, married with three children, and a dog, Tom shares the emotional rollercoaster of coming to terms with a chronic autoimmune disease. From...
I wrote this article after reading a statement posted in an Ataxia group, “I hate that the simplest tasks take so much energy.”  I feel this statement applies to everyone and I welcome your comments and reactions.  Everyone’s journey is different, and your comments could help someone in a similar situation. All of us with...
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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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