Charcot-Marie-Tooth: What it is, How it works, and How I will with it

Charcot-Marie-Tooth or CMT:

Charcot Marie Tooth {CMT} is a form of Muscular Dystrophy {MD} that effects the nerves in my hands and legs.

• It creates weakness, stiffness, and pain. There are different classifications of CMT, some being very severe and others not as much.
• Charcot-Marie-Tooth never goes away, it's a disease that stays with your for the rest of your life.
• CMT passed down from generation to generation, but with my CMT, my family doesn't know who in my family tree has it.
• I'm the only one in my family to have it so perhaps it's starting with me.

         My CMT has progressed quite a bit from when I was first diagnosed.  I think for me as a little kid CMT never really existed. It was something that was there, but I lived my life around it. I ran and played just like any other kid, with the exception of falling down and rolling my ankle. I enjoyed my life and didn't have to worry. But as I got older I started to experience pains in my legs that got in the way of me being able to do the things I loved to do. I started taking medication to help with the pain and it did for a while. ...
         Things stayed at the same place, normal and not anything that I couldn't handle. Until we moved to Texas.
        My legs have gotten much weaker as I've gotten older and the pain cycles have come on faster, become more painful, and closer together. I now use a wheelchair a lot of the time when I know I'll be walking a long distance or after I've had a cycle of pain. My CMT has never affected my hands too much when I was younger, but now they tire much quicker. When I hold out my hands straight in front of me they shake as if I'm cold.
       I know I'm lucky to still be able to move and use my legs as much as I do already, but that doesn't mean that I'm use to weakness and pain. I still get nervous about how I'm going to get around when I'm an adult, when I'm at collage. I worry about going to work and about driving. I worry about having a family of my own and how I'm going to be able to hold my kids when my arms are too weak to pick them up.
     But I take it day by day. I have amazing friends who also have forms of MD and are older than me that give me advice and show me how to do things differently. I'm blessed to have been born into a family that cares about me and does everything they can to help me.

-Dana