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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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CMTA Toronto Upcoming Events • CMT Awareness Month • Learning to slow down and attend to your needs • Existential anxiety
The Toronto chapter of the CMTA has regular meetings and events that can be joined remotely with Zoom. On Saturday, September 24 from 1-3pm EST their guest speaker will be Shannon Hardy, owner of Academy Foot Clinic and a trained podiatrist. Shannon will be speaking about foot care and the importance of seeing a chiropodist/podiatrist.…
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Asking for the ADA Suite
The hotel receptionist said there was a generator running near my room. In fact there was a giant truck with a generator and air conditioning system running 24/7 right outside the ADA room’s door to cool the whole building I’d be in. He said go check it out a few minutes and come back if…
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How long can you afford to hide it?
It’s too much trouble and humiliation to explain and ask for a little help or tolerance when hiding a disability and lumping it is how you’ve learned to cope best. That’s not a good psychological place to be in, long-term, and I can see how it’s not going to serve well post-40s.
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Lord Grizzly
Here is one of the CMT-related poems I’ve written. There aren’t many. This was the first and is surely the longest. It’s in the long-line style of James Schuyler, who offered a really fun, liberating model a few 30/30s ago. The title nods to Frederick Manfred (AKA Feike Feikema) who wrote a historical-fictional account of…
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Disease, Depression, and Family Denial
CMT and other hideable/hidden diseases may often be denied by the people closest to you — a potentially devastating, psychologically defeating, and depressing, gaslit reality that is toxic and abusive.
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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…
CMT Blog
Living and Learning with Charcot Marie Tooth Disease.