Guest guest Posted September 18, 2009 Report Share Posted September 18, 2009 Dawn, Two years ago I was suffering greatly from CMT-X. I was 40 pounds overweight and I had a serious problem with trying to move around. All and I mean all exercise, even the one I actually enjoyed, which was bicycling in the Netherlands where it's flat, and not in my hometown where every direction is uphill, and the base elevation of the valley floor is 4500 feet, meaning it's also very hard to breathe, I experienced as torture. I had no idea how I could possibly lose any weight, and when I moved to Los Angeles from Amsterdam in 2007, I thought I faced 40 more years of decreasing physical ability and increasing pain. I suspect that you are actually doing too much in the way of exercise. Why? That was my problem for my whole life. Until I took a yoga. Specifically a hotly yoga style known as yoga tuneup. You can search for that on the Internet, as I don't want to violate any rules in putting up an advertisement URL. In the past 15 months I have managed to totally reshape my body, lose 35 pounds, straighten my back, move my head and shoulders back to where there were supposed to be by strengthening muscles in my back and neck. Muscles in the neck are very often problematic in CMT, than a decade ago I had a problem where I could not hold up my head when I got tired. Now I have a straight back and the hump at the top which kind of rounded into my neck is now straight. I have developed muscle actual muscle in areas where I didn't think I could build muscle again due to CMT and its lack of communication. But the results are unmistakable. I am now able to drum my toes. Toes are very far away from the central core of your body, and usually the place where CMT starts first... in the feet and ankles and with hammertoe. Speaking of hammer toe, my toes and my fingers as result of the yoga but I have been doing are now able to be straightened out far more than they could be just one year ago. I have professional photographs taken at the University of Amsterdam's teaching hospital of my hands in 2007. I simply could not straighten my fingers out in any way like I can now. One of the scariest things about my examination at the University of Amsterdam was the doctor showing me just exactly how bad things really were. I didn't even know people could move their fingers independently left and right with respect to each other. I could not do that but now I can with certain fingers, and just like the feet and the toes, the increasing ability, the return of other abilities lost in previous years, and just generally feeling better and stronger have all accrued to me as a result of just two yoga sessions per week plus whatever I can manage at home. So I was one of the people who believed you could not really get better with CMT. I got this impression by listening to the doctors and reading the literature. But my experience with yoga tuneup has put a big damper on my feelings of helplessness with respect to CMT and its constant progression. This week when we discovered that increased abilities have now reached all the way down to my toes, my yoga trainer said, " I will now no longer believe when you tell me something is impossible. " I was so happy to see such progress that I agree with her: I simply don't know what isn't possible anymore. Further, when I left the Netherlands I was in a great deal of pain, and I was using great deal of pain medication. The yoga exercises succeeded within the first five minutes of the first session in reducing pain significantly. Over the months, the amount of pain medication that I need has fallen off to the point where I was able to eliminate an entire drug, OxyContin. So even though I'm the last person who should be saying this because CMT has made life pretty bad for me, at least through the time when I left to go live in Europe, and also in Europe. CMT prevented me from getting many of the jobs for which I am qualified and for which I applied, and it prevented me from having the career that I should have had given what I studied and when I studied it and where I studied it and who needed that information. But if you can't get through a job interview without having to be excused to the bathroom, you won't get a job. That's another thing that the yoga has helped with. Because of the weight loss, weight which was born mostly around my waist, which has been reduced from 36-31 inches in a year, there is less stress on the internal organs. That means there's less pressure on the bladder, so I have to use the toilet less frequently and I have to use the drug flomax less often to keep the urgency at bay. So my suggestion to you is that you find a different way of exercising, perhaps yoga, and that you exercise less vigorously. With CMT and exercise, often more is not equal to more. I hope that helps, Quote Link to comment Share on other sites More sharing options...
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