September is Charcot-Marie-Tooth awareness month. And since most of my friends and family really have no idea what it is that’s wrong with me (OK, well, one of the things!) I thought I’d take the opportunity to tell you a little about CMT.
Charcot, Marie, and Tooth were the three scientists who discovered the disease, which is why it is called what it is. The disease has nothing to do with my teeth. We call it CMT because it’s shorter and easier to say/remember. In this case, CMT does not stand for Country Music Television (although as much as I can’t stand country music, I’m kind of glad I don’t have that CMT!)
Here’s the low down of what it does and a really quick health lesson (because I nearly flunked Health class in high school – go figure.) Your brain sends signals to your nerves to move your muscles. CMT affects the nerves in your extremities and makes them malfunction. So when my brain sends a signal to my brain and says “Hey, you’re walking now, move that right foot!”, sometimes my nerve gets it and does nothing. It doesn’t make the muscle move even though my brain told it to. You can imagine the problem that creates. I think my foot is taking a step forward, and maybe my leg moves like it should, but my foot muscles don’t move because it didn’t get the memo. And I fall down. Super-fun, right? It also causes all kinds of pain and muscle cramps. Last night my arms and legs were cramping horribly so I just took lots of Advil and went to bed.
So because those muscles don’t get the workout they need, they atrophy and cause my arms and legs to deform. My feet are pretty bad off. They’ve turned in at the ankles, and my ankles are really weak. So far my hands haven’t deformed but are just very weak. It doesn’t mean they won’t atrophy eventually, but for now they’re straight. When I was first diagnosed 11 years ago their solution for me was to break all of the bones in both of my feet and fuse them all back together the right way. I know a few people who have had this done and love that they did. I also know a few people who’ve had this done that hate that they did. For me, just the thought makes me get all queasy so I’ll pass on that one. Instead I wear leg braces up to the knee so that I don’t fall down. They are like plastic miracles for me! I still can’t run, but I don’t have to worry about falling for the most part. And they kind of push my feet back to the way they *should* be. Sure, I can only wear New Balance tennis shoes (so if you see me in a dress and tennis shoes, I’m not trying to make a fashion statement – promise!)
And don’t worry, it’s nothing you can catch. It was passed down to me from my dad, and his dad, and so on and so forth. They didn’t have it nearly as bad as I do, I guess I just got lucky. 🙂 Could I pass it on to my girls? Maybe I already have. There’s a 50/50 chance. But the good thing is that it doesn’t get progressively worse with each generation, so even if they do end up having it – they may never show a sign of it. There’s no cure and no treatment. Yet. I keep hoping that someday there will be, but the reality is that CMT is somewhat rare and there just isn’t the funding available to make huge medical breakthroughs.
My reality is this. I’m a half-glass-full kind of girl. I’m not sad (except when the pain is really bad), and I do believe God had a reason for giving me this. Haven’t quite figured out what that is yet, but I know it’s there. I’ve figured out that stress is BAD for it, so I sold my high-stress company and got a low-stress job. I try really hard to stay away from stressful situations. And the best part is that I have THE most unbelievably loving family and group of friends who love me and support me – I couldn’t ask for anything more in life. I’m a happy girl and life is good, always.
UPDATE: September 2014
I changed my mind. Last summer I had my worst (left) foot completely rebuilt. It was a 9-hour surgery. Now, a year later, I’m glad I did. The difference in my foot is amazing and I couldn’t be happier with it. Maybe someday I’ll get up the guts to fix the other one. 😉