I am a professional dancer and was diagnosed with CMT about a year ago. It has been and continues to be devastating. I can no longer do the thing that has (for better or worse) defined me for my entire life. I have found that what helps is making my day to day life rich and full. If/when I pause to consider the lifelong implications of this disorder, it is overwhelming and paralizing. It can also be upsetting to do too much research . . . when I read someone's blog about "wheelchairs are better than they used to be", I wanted to jump off a cliff. It is a constant struggle to be suspended somewhere between hoping for improvement and surrendering to the reality. My husband has been AMAZING. he does little more than sit with me when I cry, slow down when we are walking, and he shows me constantly how much he loves me. He has never said, "its going to be ok" or implied that somehow I dont think positively enough. He is just there and that is just right....
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Hi there.
I am a professional dancer and was diagnosed with CMT about a year ago. It has been and continues to be devastating. I can no longer do the thing that has (for better or worse) defined me for my entire life. I have found that what helps is making my day to day life rich and full. If/when I pause to consider the lifelong implications of this disorder, it is overwhelming and paralizing. It can also be upsetting to do too much research . . . when I read someone's blog about "wheelchairs are better than they used to be", I wanted to jump off a cliff. It is a constant struggle to be suspended somewhere between hoping for improvement and surrendering to the reality. My husband has been AMAZING. he does little more than sit with me when I cry, slow down when we are walking, and he shows me constantly how much he loves me. He has never said, "its going to be ok" or implied that somehow I dont think positively enough. He is just there and that is just right....
February 20, 2009 - 8:38pmThis Comment
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