Category: People
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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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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 it sucked. Of course it sucked.
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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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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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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 discovery of a genetic cause (and likely cure) for a previously unknown subtype of CMT2
Published in Nature Genetics last month, the INC group’s findings are a big deal, and there is a really cool story from the University of Miami’s Miller School of Medicine about how the research team came together.
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CMT in Canada
There are not a lot of Canadian groups and resources organized for people with CMT. How can we build this community?
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Late Diagnoses
In the past the norm was we didn’t get a diagnosis, so family and friends just shrugged it off and called us “clumsy” or pretended nothing was wrong. I hope this is an outlier experience, but I was pushed into sports, like track and cross country, in high school when my feet and ankles became obviously atrophied.