My CMT Journey continues...

Sept 5

St Charles Hospital was also a teaching hospital. There were times unbeknown to us that we would have to wear a hospital gown and walk in front of a class full of students. One particular time, as my sister Patty and I finished our runway modeling, we sat on the examining table while the doctor described to the students the treatments they planned on doing. Patty leaned over and whispered in my ear, “You have a hole in your underwear”. I asked “Can everyone see it” and she nodded her head. Ohhhhh a person's worst nightmare. I just wanted the earth to open up and swallow me. I must have had a look of horror on my face as when I looked up a few of the students were smiling at me. Treatment back then was surgery. Some types of CMT cause damage to the covering (myelin sheaths) that surrounds nerve fibers. Other kinds of CMT directly damage the nerves fibers themselves. In both cases, the damaged nerve fibers result in neuropathy. The nerves in the legs and arms, which are the longest, are affected first. (CMTA What is CMT).The plan was to fuse the ankle to keep the foot upright and not drop. Dr Goodrich was introduced to my sister Patty and I as our surgeon. I was 11 years old at the time and in February 1968, I underwent my first surgical experience. I got so sick afterward, due to the ether used in putting us under. I still can't smell ether without getting nauseous. I had heard from relatives on how upsetting this was for my mother and father. My mom tried to be strong for my sister and I and for my dad. But there were times I was told that she had to pull off to the side of the road and cry after visiting us in the hospital. To be continued....If you feel led to give any donations for researching a cure, you can give online at http://www.cmtausa.org or to the MDA http://www2.mda.org/goto/CMTChallenge 

Patty and I