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There is no such thing as standing, there is only being held up.
Friends reminded me of this great passage from a letter of Franz Rosenzweig to his sister: You know, you needn’t feel bad because you lack the power to ‘tell yourself the whole truth’, for once, for your own good. Believe me, no-one has this power; no-one can help themselves. Though the world is full of…
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Physical and Emotional Pain Need Equal Attention in CMT and Polyneuropathy Communities
Alongside research for treatments and cures, the CMT community needs to take a hard look at some elephants in the room — the most common and most remnediable pains and struggles impacting our quality of daily life.
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Cal Newport has something sane to say about AI — and medicine, and much else
David Epstein and Cal Newport discuss the possible impact of AI on medicine and medical diagnostics.
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BILLY’s in Canada now!
Previously it was only possible to get BILLY shoes in Canada through retailers like Brainsport.ca and hsktkids.ca. Now BILLY is shipping from Canada to Canadian customers. Just go to billyfootwear.ca.
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Differential Diagnosis with Dr. ChatGPT-4 in the House
In a matter of seconds, ChatGPT reviewed and confirmed the findings of three neurologists and a genetic counselor that took me six years to gather. It also suggested a new diagnostic path that was only vaguely hinted at by the human diagnosticians.
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The “First Treatable CMT Disease” is Neither CMT Nor a Disease
CMT-related research may truly do away with CMT disease first by eliminating or updating how naming and classification works in neurological pathology.
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Anxious Dogs and People: Using AI to Make It Awkward
Throwing curveballs at ChatGPT gets the most interesting results. You start to see the “artificial” part of AI that often reflects an uncomfortable problem or ugly contradiction in the ways humans think and use language — especially to classify others, which always indicates status and value.
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Fuck Pain! And People Who Don’t Get It
Some medical facts and advice about pain — and then some straight talk about the question pain makes more acute: why live at all?
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If Pain Makes You Avoid Exercise, You’ll Gain More of It
A recent study of people with CMT who engaged in athletic activities at least once a week (mostly gym workouts) for at least six months showed their pain levels were noticeably lower than another group that didn’t exercise. Depression levels and overall Quality of Life scores on surveys were better for the folks who hit…
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New Gene (PSAT1) Linked to Treatable CMT-like Outcomes
Two new and treatable cases of peripheral neuropathy reported in children raise more questions about the definition and diagnosis of CMT types.
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Physical Assessments for CMT
There are several validated assessment instruments for CMT to take stock of its current and later states of progression.
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CMT, Depression, and Anxiety
It’s not surprising to learn from another (and more detailed) study (summarized here) than I’ve seen before that people with CMT are very often dealing with depression and/or anxiety, especially with more severe versions of the disease, and many go “untreated.” “Untreated” in this case means “unmedicated,” and there is a lot more that can…
CMT Blog
Living and Learning with Charcot Marie Tooth Disease.