Author: Dan Knauss
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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…
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What does it mean to consider yourself disabled?
Many of us can say both yes and no, feeling both as true and false.
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The Healthy Creative Balance: Between Unreason and Overthinking
“It seems that the key to creative cognition is opening up the floodgates and letting in as much information as possible.”
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Crip Time
What would a calendar look like that prioritized and protected caregiving? What about one that understood … different types of relationships and the soft but consistent focus they demand? That understood creativity, and children, or grief? What would a family calendar look like that made its primary steward and their needs as visible as others?
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Conference Videos Worth Watching
The 2022 CMT Patient and Research Summit has all its session recordings online now. These are mostly research-oriented, but not all. It’s good to see a few sessions on therapy and things you can do for yourself, in addition to the research focused on specific CMT subtypes. Of note: CMT is a Multi-System Disease by…
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Walk4CMT is coming up on September 18!
I will be walking as far as I comfortably can in Muscular Dystrophy Canada’s Virtual Walk4CMT on Saturday, September 18 — which is somewhere north of 20km at which point the numbness setting it around 10km usually gets into a little more active pain, thanks of course to the effects of a relatively mild case…
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BILLYs
Thick sole, wide toe box, big ankle support, and the upper unzips to fold open for easy access and orthotic insertion. What’s not to like about BILLYs?
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Maybe it will work on CMT..?
It seems the new hope for VM202 as a CMT1a treatment is perhaps Hellxmith’s latest attempt to find a market for an experimental product that has not panned out as hoped.
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CMT Blogs of Note
Two blogs about CMT I found recently: the MFN2 Project and Help Chronic Pain in Alberta.
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New Study of Genetic Causes of CMT Needs Participants
The Rare Diseases Network is looking for participants in a new study looking for unknown causes of the most common types of CMT.