Calling All People With Charcot Marie Tooth Disease

The worst thing about having a “rare” disease is that I have never had a doctor who has treated this disease before so I get to be a guinea pig and that frequently ends badly for me, in fact it almost killed me and still may if I cannot get what is left of my body to function enough to be able to take care of myself as I live by myself and have no one to help me so if I can’t do my own shopping, cooking, cleaning and caring for my pets we will all die and that is a very scary and depressing possibility that I am moving heaven and earth not to have happen. My family is broken and I was always the glue that bound us but once my life started falling apart six years ago and needed help from them and they couldn’t, or wouldn’t help me, everyone fell apart and my family is in a state of total disarray and dysfunction. So I am now in the fight of my life but I would like to reach out to others with this disease to see if we can help each other since the knowledgeable professionals are few and far between. It would have been a luxury to have only to have had to deal with my disease for fifty some years and not to have to deal with a family torn apart by sexual molestation and metal abuse as well, but that was the way it was and is. I had a lonely childhood and spent a lot of time reading books and living in an imaginary world of my own making, it was a much happier place than the real world. I didn’t really know I was disabled until I started school, that is when you start getting compared to everyone else and that is when you find out you can’t do things other kids can do, like pull yourself up on the monkey bars, skip rope, run around the track and pretty much every physical thing that was done in PE. I did find out I was above average in intelligence so that is probably where my make believe world came into play, it was a place where I could be the same or better that the other kids because no matter what people say kids are not honest, they are cruel and I think parents need to spend a great deal more time to educate their kids on how to deal with handicapped children, no matter what the handicap is. My school practiced a form of discrimination when I was in first grade through fourth grade that I hope went away forever when my school figured out what a bad idea it was, and it was discrimination based on intelligence and not physical disability but I am sure it was no less hurtful for the kids on the lower end of their intelligence rating system.

Charcot Marie Tooth syndrome is the most common inherited neurological disease in the United States. It is a neurological syndrome, composed of different disorders that affects mainly the peripheral nerves. I was born with the most common form of Charcot Marie Tooth, Type 1a, and I have discovered over the years that if I want to keep being able to walk I have to exercise every single day, just like I have to eat, but I can’t exercise too much either. It is not an option so I guess apparently my muscles have no ability to store strength like I guess “normal” people do, I say I guess because since I have always had this disease I have never, and will never, know what other people’s muscles do. I only know that I have noticed if I don’t ride my exercise bike for 10 miles a day I will be less stable and my legs will be weaker the day after I didn’t ride the bike but if I do this I can’t do anything else or I will be equally unstable. The most efficient form of exercise is isometric exercise. I do not pretend I understand this at all but I absolutely know it is the way it is. It sucks but not being able to walk sucks a lot more. I am just mystified that I have figured out so many things about my disease that the “experts” won’t tell us and continue to take research money when they have probably already figured out the same thing that I have figured out, “we have gone about as fur as we can go”! I have figured out that the only “secret” to living the best way you can live is to exercise lightly and every day and if you try to do more than that you won’t gain anything and most likely you will make yourself weaker for a day or two. That is the highest price you will have to pay because for whatever reason (this means that I don’t understand the scientific reason but I am sure that the scientists do) the muscles of people with this disease cannot store the benefits of exercise, yet they also can’t go without any exorcise. I know this sounds like a totally opposing kind of a condition but I have finally figured out it is the total reality. I used to wonder why no matter how many times I went up and down a staircase to exercise that I could never climb the stairs any better, and finally I realized my muscles have no ability to store in them what it takes to build muscle strength. I am not sure why the doctors and scientists that surely have figured out what I have do no tell people that this is the reality. But I do know that this is the reality and I challenge any scientist to prove me wrong.

The most depressing part of this disease is no one really knows how to treat it, and possibly the reason is that there really is no known right way to treat it so that no matter how hard you are willing to work to do the right thing no one can tell you with any certainty what that right thing to do is. It is both frustrating and depressing, I want to be in the best physical condition it is possible to be in and there is no way to know how to achieve that. I can’t tell anyone that doesn’t have this disease how frustrating this is. If you don’t exercise at all you will lose your muscles, if you exercise too much you will lose your muscles and absolutely no one knows how much is not enough and how much is too much. Can you imagine how frustrating it is to have either choice be a total crap shoot? When you have “normal” muscles you can work out with a totally expected result from the amount and kind of exercise you do, with CMT there is no right or wrong amount and no for sure results either way. This makes it very difficult to choose what kinds of things to do to be healthy when no one can tell you what they are. I would like to start a site where each of you with this disease posts the things that have worked and the things that haven’t so that maybe we can all help each other out from our experiences since doctors do not really have any good answers. I think we need to be the masters of our own fate and share what we have learned about our bodies abilities with each other to try and help each other live as the best life we can having been given the cards we have drawn.

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11 thoughts on “Calling All People With Charcot Marie Tooth Disease

    • Also, you are right no one will ever understand what it’s like unless they live with this disease. It’s so hard to help “outsiders” understand.

      • I agree with going public!!! I have a FB page that I keep up with as well that I share my story on to help others learn about it.

    • I am the olny one in my family with it, since I was adopted, so I went YEARS without knowing why certain things were so much harder.

      • That is unfortunate because this disease is has a 50 % chance of being passed on. My father came from a family of 7 and 3 of them inherited this disease and I come from a family of 2 and I have it and my sister doesn’t, exactly 50%. The best way to stop this disease is not to have children and It has been successfully been stopped in my family as I am the last person that can pass it on and I have chosen not to have any children. It is a cheap and simple way to stop this disease but something you wouldn’t have known by being adopted.

  1. Actually there is no way to stop it. You don’t have to have a family history of it to give it to a child. “Some cases of Charcot-Marie-Tooth disease result from a new mutation and occur in people with no history of the disorder in their family.”

    • You pretty much do have to have a family history to pass it on, there are few cases of it happening to people who don’t have a family history. If you research it fully it is mostly a hereditary disease that can be stopped by not having children.

      • I see, Well I just wanted to let you know if you ever needed someone to talk to that understood it and what you go through I would love to chat, also about the Facebook page that has 1600 members and we discuss all types of topics, ask questions and give other like us support.

  2. Since you are adopted it is understandable that you don’t know all of the hereditary factors involved with this disease, but it in no way takes away from the reality of having this disease that you have experienced.

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