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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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Feb 206 min read
Creating an Accessible Bathroom
Changing an outdated, dangerous bathroom into a contemporary, accessible, safe space.
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Mar 31, 20233 min read
I. The Puzzling Progression of MSA
Part I: Recognizable Progressions These past three weeks have been emotionally more challenging for me. No doubt, my own sense of systems...
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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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Mar 27, 20233 min read
The Power of a Fist Bump
This morning I was at the gym for my regular workout. Getting there was not easy, to be honest. Today seems to be one of those days that...
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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?
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Feb 18, 20233 min read
Dying with Dignity
Warning: This posting addresses the topic of medical assistance in dying (MAID) as a respectful and caring approach to the end of life....
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Feb 10, 20234 min read
Being On Guard is Exhausting!
Are there times in the day that you actually relax all your muscles and release the subtle, yet ever present physical tension in your...
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Feb 9, 20233 min read
Living into a disease that takes lives. Hmmm.
Multiple System Atrophy, or MSA, is a rare complex neuro-degenerative disorder that affects around three people in one hundred...
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