tag:blogger.com,1999:blog-9062088533268730683.post3119384285796424649..comments2020-04-05T20:57:02.220-07:00Comments on Living With Charcot Marie Tooth: Coke at 1:38amSerpahttp://www.blogger.com/profile/16398351111602608158noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-9062088533268730683.post-88993942059388751242010-04-14T13:38:33.368-07:002010-04-14T13:38:33.368-07:00Phew, what a lot going on in your world!
I can'...Phew, what a lot going on in your world!<br />I can't answer everything, but I wanted to write because I have CMT. I was diagnosed at 13 and the whole incurable, degenertive, scary future thing clouded my sky a lot when I was young. What the doctors don't say though is that there is a lot of time to explore and have fun no matter what physical challenges we face. I had that gloom (still do) but I also have tremendous creativity and a wonderful loving family. No one can predict how your journey will progress. But I have had symptoms fade, strength return, etc. when I changed my lifestyle- got more rest and less stress. It is a dance.<br />I laughed at your desciption of the doctor's face- I've seen that many times! One time she said, "oh, the range for your age ends at 36 pounds of pressure (or whatever). You're at 34."<br />"That's good. I'm close."<br />She gave me that look. "You're off the chart. That's not good."<br />Oh, well, what can we do?<br />Keep being creative and have fun!Lenkahttps://www.blogger.com/profile/03832791375861465119noreply@blogger.com