I started this blog to talk about saving money and giving daily living tips. One thing that I want to start incorporating into my blog is little tips that I use on a daily basis to make my life easier. As I mentioned in my About Me section of the blog I am disabled. I did not mention what I have, but today that is what I want to talk about. A couple years ago I started a blog Is it My Teeth? it never took off because I didn’t have any followers or much time. I only have half a dozen posts on there, but I will be using some of the information from it on here when I talk about it.
What is CMT?
CMT is a disease that affects the nerves in the arms and legs as well as hands and feet. Over time the nerves get hurt and begin sending false signals as well as begin to lose the signals on the way to the area. The nerve damage affects sensation and muscle strength in those areas. There is often evident muscle wasting in the hands, feets, and lower legs. Another common symptom of CMT is a foot with either a very high arch or one that is completely flat. I will provide pictures at a later time of my high arched foot and slightly wasted hands.
My Life and CMT
My CMT has affected me my whole life although it never really starting getting bad until I was a freshman in High School. Up to that point I had been in Physical Therapy instead of participating in my P.E. classes and was unable to run, jump, play ball, ride a two wheeler, or skate. These things all slowed me down from my friends, but I still kept going. My freshman year I tried wearing leg braces (AFOs) to help out with all of the tripping I was having due to the high arches and the fact that I have foot drop, where you big toe is lower than the rest of your foot due to a bone movement. This did not work well for me as everything we tried hurt my feet so, finally after a year of trying this I gave up and went back to avoiding stairs and taking the elevator.
In High School I felt very singled out leaving classes early to make it across the large campus in time for my next class and the help I had with extending my test lengths as well as note taking help due to my fine motor issues. By the time I graduated High School I was unable to write for more than 10 minutes without having to put the pen down and relax my hand. I would sit there doing some stretches that I hand learned to help relax the muscles. This has continued to worsen over the past few years and I have learned to type well and use this method more often than handwritting.
After my graduation I also took the time to learn more about my disease and I wrote an essay about it for a college class. During this I learned about the CMT Clinic in Detroit, MI where I decided to make an appointment and see what they had to offer me. Doing this was the best thing I could have done.
By deciding to go myself I convinced my family members who also have CMT to go as well (on a different day). We all learned that we have CMT 1B.
I also was taken to a new specialist who was going to help me out trying on a different kind of AFO. This AFO is amazing and fits perfectly. It helps me walk in ways I never knew I could. This leaves me now with the same braces and the same pregression that I am dealing with today. I never know what will happen the next day and it frightens me often, but I try to do my best.
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