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CMT hasn't dominated my life CMT has been an important part of my life since I was a small boy in southern California. My grandfather was disabled by it but, wearing braces of his own design and manufacture, he was a successful lawyer and, until the Depression, a successful industrialist, too. My older brother exhibited symptoms early in his life, about age five. My own symptoms did not appear until I was nine or 10 years old, what seemed like an advanced age to us at the time. One of the things that has surprised me most as I have learned about more people who have CMT is that it does not appear in many people until much later in life. By the time I was in the eighth grade, I could not walk more than a few steps without falling down. It was hard to get braces then because the brace makers were all involved in outfitting casualties of the war, but I was able to get a pair eventually and, finally, to have operations on my feet in a military hospital. All of the orthopedic surgeons were in the service, too. I finished high school and started college. The main effect of CMT on my life to that point was that I was forced to change my career choice from surgeon to teacher because my fingers were not strong enough to operate on people. In the late 1930s, my parents had become frustrated in the search for a doctor who understood the disease from which my brother suffered and took the advice of their minister who recommended that they take him to Dr. Hugh T. Jones who had moved to Los Angeles in 1929 after many years at the Mayo Clinic. Dr. Jones operated on my brother in two successive summers, one for each foot. After his surgery, my brother completed high school and college and worked for 30+ years in the federal civil service from which he is now retired. My own surgery was less successful. We always believed the military doctors hurried they had a lot of seriously injured battlefield casualties on the theory that they could operate again if things didn't work out. That might not be the reason because they were good surgeons, one having been chief of surgery in a prestigious New England hospital during peacetime. In 1950, my parents decided they would have Dr. Jones operate on my feet. One week he did my right foot, following the then standard procedure of attaching the surviving muscle's tendon to both the inside and the outside of the foot. The next week he came to see me the night before the operation on my left foot and told me he would like to try something new. He would drill a hole through the bone created by fusing the four bones in the foot and attach the tendon to the foot, undivided, by feeding it through the hole and tying a knot in the end. The procedure initiated on my foot is now the standard treatment for CMT cases, at least in the western United States. It is named for Dr. Jones. I have not seen Hugh Jones for almost 40 years. My clearest memories of him are that he was tall and had the most beautiful sky blue eyes I have ever seen. He was gentle with his patients and cared very much that they would be able to walk better when he finished his very skillful treatment. His office covered the entire top floor of the Wilshire Medical Building in Los Angeles. He had his own X-ray room and technician and his own cast room. He was often tired because he was the official surgeon of the University of Southern California Ski Club and they broke a lot of ankles seven one weekend that I was in the hospital. After my second surgery, I finished college, married and entered the field of public education. I taught 24 years in high schools in California and served 12 years as an administrator before retiring. This year, following my retirement, I ran for and was elected to the governing board of the school district in which I live. There were things related to the school that I could not do because of CMT, but not very many, and certainly not any that interfered with my performance. I never felt that I did not pull my weight on the job and no one ever expressed to me the belief that I didn't. Until about three years ago, I got around as much as my job required me to, but because of progressive deterioration of my muscles, I now wear plastic braces to counter foot drop. My brother wears heavier braces because his ankles tend to roll more than mine do. I have four daughters and one son. All of the girls women, really, as the youngest is 28 have tested positive for CMT, but only the youngest required surgery. (It was her surgeon that informed me of the significance in CMT history of my own left foot.) My son tests negative. My mother tested positive but only after she turned 80. My wife and I were, of course, concerned about the possibility that one or more of our children would have CMT, but we believe that in our family, at least, the disease has never been so debilitating that it prevents a successful career, and our three oldest daughters are in professional areas while the youngest is earning a doctorate so that she can teach in a college. So, while CMT has been an important part of my life almost as long as I can remember, it has not dominated my life. It affects my decisions and limits what I can do, but only the physical area that I think is not very important. The parts of my activity that matter to me are essentially unaffected.
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