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Patient 2 Patient Support & Understanding
Check out the podcast version of blog posts
Live into It
Sep 86 min read
"The label doesn't matter. There's no cure."
When a doctor implies that it doesn't matter what ataxia you have because there is no cure violates your right to be fully informed.
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May 15 min read
Our Disease. Our Symptoms.
New research points toward the need for multi-dimensional clinical assessment practices of ataxia.
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Mar 186 min read
Spaces, Lights, and Ataxia
Get Mike and I outside or in a large building space then we wobble, and are uncoordinated and clumsy.
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Jul 2, 20235 min read
I’m Still Here
I attempt to explain my absence and share how confusing neuro disorders can be.
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Mar 31, 20233 min read
II. The Puzzling Progression of MSA
Part 2 of an exploration into the research-based progression of MSA.
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Feb 25, 20234 min read
Do you see what I see?
I thought I would develop a primer for myself and any others who are feeling visually afflicted. How does MSA affect vision?
101 views0 comments
Feb 13, 20233 min read
Flying Dutchman Syndrome
I hope you have seen any one of the Pirates of the Caribbean (Disney) movies. It will help with the metaphor I am using in this post. ...
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