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September 16, 2019
[not my legs]

One of the things that’s joined me on my journey through life is something called CMT . This which stands for “Charcott-Marie-Tooth.” It actually showed up in high school when my mom pointed out my jammed up toes. As it turned out, I also couldn’t jump much at all nor run very fast. Endurance wasn’t a problem, but speed and getting off the ground was. I even had a friend try to teach me how to jump–to no avail as at best it was just a couple inches (he could jump about 3 feet off the ground).

And then life took over for a couple decades, with lots of work, a minimal of exercise, till in 1993, my mom again saw something a little strange. This time it was my calves, which were getting thinner than they should have been. So before we headed back to Madagascar I was in to see a Neurologist. Who tentatively diagnosed me with CMT, something I’d certainly never heard of. In addition to my thin calves, I, somewhere along the way, had lost my ability to stand up on my toes–something that was news to me! When did that happen?! So as a follow-up, another neurologist hooked me up to an old Apple IIe (the kind with the top off) and started blasting electricity up and down my legs. Not fun! After what seemed a long time of this, he looked at me in some frustration and told me the tests were inconclusive. That the only way to find out was to take a biopsy of my heel that would probably leave me with a permanent limp. This didn’t sound like much of a deal, so I asked him what they would do then if they did determine I had CMT? “Nothing,” he said. There’s nothing you can do about CMT. At which point I elected to avoid the whole biopsy thing.

So then it was time to figure out what CMT was, as I’d never heard of it before. And how my teeth were connected to this all? At which point I found out that Charcot-Marie-Tooth actually were the last names of the 3 French doctors who discovered it and thus had no connection to anything dental. CMT is a form of neuropathy that attacks one’s long nerves, as in those in the legs and arms. Unfortunately, as the nerves lose their ability to work very well, one’s muscles at the end of these nerves start to atrophy. Which results in things like skinny calves, sometimes described as “inverted champagne bottle” as that’s what they look like. So this didn’t sound like much of a deal. But it was what it is.

While it was clear at this point that there were certain things I could no longer do, things didn’t seem to have progressed much. So it was about another 10 years before I saw another neurologist, who while he didn’t know much about CMT, had a colleague who did. So it was another round of tests which this time confirmed it all. But there was still nothing to do. Other than a brand new set of braces for the feet and legs that extend from the tips of my toes up around my heal to just under my knees. With them I got about 20 years back of my walking ability. And good news was there was no talk of biopsies.

But there’s still nothing that can be done about so it’s just another part of my journey through life.

From → Change, Life

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