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Ataxia Awareness
A Community Mobilized Toward Treatments The National Ataxia Foundation (NAF) is deeply committed to finding treatments and cures for Ataxia. Since its inception in 1957, NAF has strived to mobilize resources and support from the community to advance research efforts.  Sue Hagen, the Patient and Research Services Director, emphasizes the critical role of patient involvement...
At twenty-three, Yesenia Ramos from Edmond, Oklahoma, reflects on her life with Friedreich’s Ataxia (FA), a condition she was diagnosed with at the tender age of six. Her Mexican heritage is a significant source of pride, and she lives with her supportive parents and an older brother who also has FA. Yesenia’s path to diagnosis...
At least, they shouldn’t be. But here we are… Why is the use of medical devices stigmatized? I recently found out someone I know has been struggling with their mobility. Rather than sink to the level of using a walker or wheelchair*, they choose to stay home most days. It’s sad to me when people...
Life is about accepting the challenges along the way, choosing to keep moving forward, and savoring the journey Roy T. Bennett When we moved to our ‘forever’ home in 2013, we extended it to add a master bedroom with an ensuite wet room. We future-proofed the bedroom by including a strengthened ceiling to accommodate a...
I am nearsighted and have worn glasses since I was a child. Nowadays, I wear them pretty much 95% of the day; when I’m on the computer, watching TV, or just existing in the world. If I wear them while I’m reading, however, they tend to give me a headache, so when I take up...
Hope is being able to see that there is light despite all of the darkness. Desmond Tutu I have mentioned Neurofeedback therapy in past articles and now that I have completed a few sessions, I wanted to expand on my experience. As always, I am trying to learn what treatments and therapies are working for everyone. If...
In a heartwarming story shared by Jason Wolfer, we meet Mary Scheetz, a resilient individual living with Spinocerebellar Ataxia number Eight in Portland, Oregon.  Mary’s journey with Ataxia began over a decade ago, marked by a series of symptoms that gradually led to her diagnosis. Reflecting on her experience, Mary recalls the onset of food...
Fatigue is the shadow of ataxia, but within that shadow, we can discover the strength to shine. Living with ataxia, a neurological disorder that impairs movement and coordination, comes with special difficulties that go beyond physical symptoms.  Constant fatigue is one of the most common and confusing symptoms that people with ataxia face.  It’s important to...
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...
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My purpose

michael mantz
To continuously empower others on building healthy lifestyles where personal/spiritual growth is prioritized, the pursuit of positive mind-body change is valued, and the notion of making the most out of life is a core motivation. In addition, to raise overdue Ataxia Awareness and spark meaningful perspective shifts that both present-day society and future generations can mutually benefit from.

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