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Archy is a turtle, but, as you can see, he's not just any turtle. Archy joined the CMTA in April of 2009, when he became the mascot for the kids' page. Since then, he's been working really hard to help make it easier for kids to understand CMT, and also to give parents some ideas when they talk to their kids about CMT.
As they become available, we'll list the further adventures of Archy here, but in the meantime, if you have a question or story suggestion, please email it to him at archy@charcot-marie-tooth.org.
P.S. It's okay for parents to write to Archy, too.
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For a long time, I’ve struggled with my walking. I’ve walked on my toes; I’ve walked on the outside of my ankles; I’ve fallen more than I’ve walked sometimes. So,
it wasn’t a surprise to me when my mother told me I had an appointment with a new doctor.
When Tina had approached me about being a mascot for the CMTA, the topic of her disorder and my strange-looking feet had come up. My mother was very surprised to know that there was a name for my problem because we always thought I had the Turtlebaum feet. My mother’s father had feet like mine and while my mother
walked perfectly well, she always mentioned that my feet looked like her father’s. Still, we thought it was just a Turtlebaum problem, and the idea that I might have something that thousands of others had was pretty amazing.
Not necessarily good, but amazing all the same. So, on a Tuesday, I missed school so that I could go see a new doctor, a type called a neurologist. He was a snake (I don’t mean that to sound like name calling; he really was a snake) who had studied under some really famous neurologists in a place called Detroit, and he knew exactly what CMT was.
He rather matter-of-factly checked out my reflexes by hammering on my knees, and my reflexes were totally lacking. Then he watched me walk and pronounced
that I needed an EMG and an NCV (some scary-sounding tests that send little electrical signals down my legs) to determine if I had CMT and which type it was, if it was CMT.
I’m a fairly brave turtle, but the machines he hooked me up to were not pleasant looking. There were lots of wires and beeping sounds and, frankly, I was scared. But, my mother stood right by me and held my hand, and Dr. Pythonic explained about the little jolt I was going to feel when they sent the current down my legs. It sounded worse than it really was. I wouldn’t necessarily want to have it done again, but the
pain was not that bad and it was over quickly.
My results told them I did, in fact, have Charcot-Marie- Tooth disorder, and it was a demyelinating form. I have no idea what that means, but my mother seemed to be following the doctor’s explanation. She said that the myelin around my nerves (kind of like insulation around an electrical wire) was breaking apart and that kept the
signals from getting down my legs properly.
The type you have is important to know for reasons related to research and possible cures, but otherwise, everyone with CMT looks pretty much the same and deals with the same problems. In my case, my biggest problems right now are walking and falling. The doctor has something in mind to fix those problems, according to my mother.
Dr. Pythonic’s nurse was a real fox (again, not name calling—she was a fox named Ms. Redd) and she gave us some papers to read that explained about CMT. It was weird, but one of them was all about the CMTA, the group that I’m going to be working with. I felt pretty important when I thought about how much good I could do by telling my story and being a role model for others who get diagnosed with
CMT. I’m hoping that I won’t get a lot worse if I do everything the doctors and therapists tell me to so I can continue to do all the activities I enjoy.
My sister didn’t get the Turtlebaum feet, so I feel a little special. I know that my PopPop handles his bad feet and legs pretty well, and I’m going to be like him. He doesn’t let anything stop him from doing what he always has. I know he doesn’t climb up on the roof of his house anymore, but, frankly, I haven’t ever wanted to do that. He takes care of his pets and he does the gardening, and I know he’s a great swimmer like I am. So, we have lots in common and that is pretty special because I
love my PopPop a lot.
All in all, going to the doctor’s wasn’t as bad as I had feared, and now that I have a name for what’s wrong with me, I feel more like I’m part of something bigger and more important than just my life in the pond. I have a feeling I might wind up doing something great. Stay tuned.
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