I Have Charcot Marie Tooth And I Want To Live!

I went on Facebook and put in the disease I have, Charcot Marie Tooth, and I found a man in England that has a girlfriend with CMT and he wants to make a documentary about this disease. He posted his project on Kickster. He got hardly any views and no support. Zach Braff, who could probably have funded his movie project without any help got all of the funding he wanted in 4 days. What does this say about people, or maybe the best question is what does this say about what people value?

The movie Zach Braff was funding is a movie he could have got funded by traditional sources and he didn’t want to take orders from someone else. That is fine and he has every right to ask for his project to be funded.

The project that the man who was trying to do a documentary about because his girlfriend has CMT is not known, not famous so the money people have to spend to make a movie was spent on a frivolous project well before it was spent on a project that might save people’s lives.

Maybe I have my priorities screwed up, but I don’t think so, but why would so many people give their money to fund a “fluff” project before they would fund something that really would save real people’s lives?

Check this site out if you want to save someone’s life:



Growing up different!

I am mad as hell. I have the most common inherited neuropathic disease there is and no one has ever heard of it and it is called Charcot Marie Tooth. Isn’t there something wrong with that? One in 2,500 american s have this disease and I bet you have never heard of it have you? Apparently no one famous has this disease or if they do they haven’t told anyone that they have it. Which is actually very common with people who have this disease, we can almost pass for normal (if you don’t go hiking or do something that requires physical dexterity) if someone isn’t real observant or doesn’t ask personal questions. The reason we don’t talk about our disease a lot goes to the horrible problem that we all have to deal with, that problem is that being different is not a good thing! We are taught this from the time we are children in grade school and we got made fun of because of our physical weakness. I was always the slowest person around the track, I couldn’t pull my weight up with my hands on the monkey bars but because when you looked at me I didn’t look that different no one understood what was going on and trust me, neither did I. The problem with this disease is that you are not just different, life if you are gay you are different but you are not disabled. The cruel truth of Charcot Marie Tooth is that you can look the same as everyone else but you are crippled physically and kids will make fun of you no matter what the reason is that you are “different”. I spent my whole childhood trying to do as many things as the rest of the kids could do physically. The only salvation I had was that I was smart so at least I could excel in that area and I became  book worm because it was my world to escape to. I do believe that growing up different is bad for everyone who feels they are different, no matter how big or how small the difference is, it is apparent to me that if you feel different you are different but there is a reality that having a physical handicap by all rights should be a worse problem to deal with that thinking you look weird or different than someone else. I do believe from watching what happens with screwed up people that they seem to have as many problems as people who can barely walk but I have a lot of trouble understanding it. I would give anything to be able to walk up stairs without pulling myself up one stair at a time and then I read about someone who can’t deal with not being beautiful. I would give all of my looks for the ability to physically function. Maybe all disabilities are the same in that they are disabling but I would give every thing I have to be ugly and be able to walk. I have a lot of trouble understanding how someone can be so screwed up over some of things they are when the rest of us are just struggling to put one foot in front of the other one, literally! If I am missing something please enlighten me as I spend my whole day trying to physically get to the store and buy my own groceries so I can live. Since I have been disabled from the age of 3 to 56 I am getting tired of the struggle, but getting tired does not mean I will give up. But those of you who have a choice please appreciate what you have that so many of us would give anything to experience. Growing different is very painful no matter what the reason but if you are not disabled I think you should learn to appreciated the beauty of having a body that works and get over the things that made you different while you were growing up if you grow up to have an able body. I would give anything to have your able body and I don’t think you would give anything to have my crippled one! People need to learn to get over the small things that kids tease you about, because once you grow up you should be able to leave those kids behind, and parents should spend a lot more time teaching kids not to be cruel. A lot of children’s problems could be helped immensely if parents really addressed the issue of their children making fun of other children. Being different as a child should not be a life sentence!

Charcot Marie Tooth – Part of my Story

The most evil thing about Charcot Marie Tooth is that you can want to do everything in the world to get better and then you find that there is nothing you can do to get better. It seems like a worse diagnosis than if you were told you have cancer and there is only a 50 % chance of survival, at least in that case you can do everything right and you have a chance at regaining your health and strength. With CMT the reality that really does seem totally incomprehensible is that you cannot really get better, you cannot build up your muscles, the best you can hope for is not to lose more than you already have lost. No matter how willing you are to exercise for however many hours there are in a day, there is no way to build any more muscles, period. It really does seem like a death sentence of sorts because you can do almost nothing and be weak and you can exercise for hours a day and be equally weak or even worse. There is really no other disease that this scenario happens with, almost everything gets better if you work at it. That is the amazingly depressing scenario of Charcot Marie Tooth disease. I was three years old I have been told by my mother that it was when she noticed I wasn’t able to walk very well, even for a baby, the disease had onset and what it muscles were claimed first were those of my feet and ankles and I couldn’t walk the same way other children of my age were able to do. Then there were losses of different muscles, my hands and wrists became weak and I could not grasp things very well. Then when I was six, just after I had started grade school, the orthopedic surgeon my mother had taken me for what seemed like a million times suggested that they perform a surgery on each of my ankles to set the main bone in my ankle at an angle that would make it harder for them to twist them due to my weak muscles. I don’t really remember what it was like before those surgeries but I do remember the terror I experienced when my mother took me to the hospital and I woke up after the operation with a cast on my foot. She never told me what was going to be done to me and it freaked me out and created a lifelong fear of doctors and hospitals that possibly could have been avoided had she told me that I was going to have a surgery on my ankles so I could walk better, she never told me anything which created my being totally freaked out when I came out of the anesthesia and was in pain with a cast on my ankle.  I already felt like a freak because I couldn’t do the things other kids could do but this took feeling like a freak to a whole new level. Even at the age of 56 I still remember how scared I was when I woke up in that hospital bed, with three other kids in the same room with different kinds of problems. The only kid I remember was the one who had his tonsils removed because he got to eat ice cream all of the time, doesn’t that sound like a reason a kid would remember something?  I remember not wanting to go to school with my cast on as I have already stated that I had felt like a freak before the cast and certainly didn’t want to be any more different than I already was. Here is an excerpt from a paper my mother wrote for a class she took when I was going to college from a teacher I had taken psychology and philosophy classes from that I told her she would like. I only got to read this paper she wrote after she died of cancer four years ago when my stepfather gave me her class papers. It wouldn’t have changed my experience with the hospital I had as a child but might have helped me deal with how screwed she was later on in my life.  Here is part of what she wrote:

When Michele was six she had to have operations on her feet. I obviously did not prepare her for these operations as well as I should have. She is 27 now and the other day she said “when I overheard you talking to someone about that first operation, I became so frightened I nearly died!” I think that I should have taken her to visit the hospital before the operation, but even more importantly, I should have talked to her about her feelings, even though she didn’t ask any questions I could have said, “I know you are very frightened about this operation and I know it will be unpleasant and you will have some pain, but you will be able to walk better and I will be there with you to help you.”
When she returned to first grade on crutches, as we approached the classroom she didn’t want to go in. Her teacher suggested that I leave her and gently restrained her from going with me. I did leave her because I felt she could handle it, thought was difficult for me. 

Well of course I didn’t ask any questions, I didn’t know what was going to happen so what questions could I have asked? When I was diagnosed with CMT 53 years ago they didn’t know very much about the disease and CMT was classified as a form of Muscular Dystrophy, the only form that didn’t continue progressing in its destruction of the muscles until you died from it at a very young age as is the case with MD. They now know that the atrophy of the muscles in CMT is not as direct as it is in MD proper, in CMT the nerves that control the muscles are destroyed which in turn cause the muscle loss. When I was directly asked what was wrong with me when I was young and very little was known about this disease, which didn’t happen very often, I could only answer that I had a rare form of MD that only affected my feet and hands and didn’t progress after its initial damage and this is what I believed about my disease until I was in my forties because even after the internet came out I refused to research my disease because after I had the second two surgeries on my ankles at 16 my orthopedic surgeon told me to go out and live a good life and I shouldn’t ever need to see him again. Well I always felt like this was a little too optimistic but I also feel in some cases ignorance is bliss, so to speak. I had noticed that no matter how hard I exercised I could never climb stairs any better than I could before I worked hard at building up those muscles, my thighs, stomach and upper arms would get more toned up but my grip never got any better and my ability to go up and down the stairs always required that I had to hold on to a rail or a friend’s hand to not fall no matter how many times I went up and down the stairs, in fact if I went up too many or too steep of stairs I would run out of strength in my legs and have to sit where I was as my legs would just give out. They would recover after giving them a rest of sometime ten minutes and sometimes it would take an hour but I have since found out that irreparable damage can be done by pushing my body like that and I am very thankful that I didn’t have that happen because I had no idea that could happen. Probably if I had looked CMT up on the internet I might have found this out but I was hopeful and optimistic about my CMT up until the first time it really got worse since I was a child at the age of 51. I feel that what my mother once said about me that I was “too optimistic”, this served me well in my not getting too depressed about not being able to improve my physical abilities and had I known that losing more of the use of my hands would most likely occur as well as my legs getting weaker I might not have traveled to Mexico or have gone to Spain, so since not knowing the truth didn’t hurt me I am glad that I didn’t spend a life in fear of losing the use of my legs or hands until it actually became a reality. I saw a video on You Tube recently where a young woman was determined to do a physical skiing activity so badly that she totally exhausted her muscles to the point that she never recovered, I have done things close to that but quit short of the point she did as I recognized I was getting weaker at what I was trying to do so I saw no point in continuing to do the activity that I was not able to do. If I had continued on I quite possibly could have done the same thing to my legs that she did to hers but since I wisely chose to give up when I found I wasn’t getting ahead I didn’t do any permanent damage but it could have turned out different and I do understand the young gal’s determination to try and do something that seemed like it should be close to attainable. The desire to improve one’s self is a very powerful and necessary element in a human being’s life and the removal of that ability is one of the most depressing aspects of the disease of Charcot Marie Tooth. There really isn’t anything we can do to get better and it is rather depressing, granted I am better off than a person in a wheelchair but the knowledge that the best you can do is maintain whatever strength you have and never ever get any stronger is a powerfully depressing notion as hope is one of the biggest motivators in any human being’s life and to take some of that away is to take away a little piece of your heart and soul, no matter how grateful you are for what you do have. It is a hard thing to come to terms with, you will find that most people with Charcot Marie Tooth are very quiet about their disease, they don’t complain and they frequently try as hard as they can to not have people even know that they have it and that starts for those of us like me that have the most common type, early onset 1a, because we have it when we are in grade school and junior high when kids care about not being different the most and when other kids are brutally cruel in pointing out how different you are. I feel this is something that parents need to pay more attention and teach their kids that it is not cool to be cruel and make fun of kids that are different. This applies to mental capabilities as well as physical ones. Ever since I can remember all I ever wanted was to be “normal”. As a child that was born with a physical disability my definition of normal was someone who could walk without twisting their ankles and falling down, someone who could hold their body weight with their wrists to use the monkey bars and someone who could run, all of the things that I couldn’t do. I went to a grade school which had a strange system for sorting students into classrooms. I guess the idea behind it makes a little bit of sense but they hadn’t really thought it through well enough to realize that while the idea wasn’t totally without logic but by unfortunately putting it into practice it brought out the “dark” side of children by using the method they did for determining which students was placed into each of the three classes needed to have each class be a manageable size for each grade. They gave all of the children a test when they first came to school in the first grade to determine a rough intelligence level for all of the students and split the 90 students into 3 classes of 30 children in each one for the approximate 90 first graders. I think this was the first year this school had done this, I don’t know this for a fact but they kept the same approximately 30 students together in each class as they advanced from first grade through third grade. I was put in the “smart” kids class and was with pretty much the same children for second and third grade as well.  The eventually found out that the “smart” kids were so much more capable of totally disrupting class so much so that they changed the whole system by the time I started 4th grade and separated the 3 biggest “trouble” making boys into 3 different classes and equally distributed the smart, medium smart, and the less smart kids into three classes not differentiated by intelligence. I am sure that their initial reasons for putting the children into classes based on their “raw” IQ was to give each group of children the proper education for their IQ. What they didn’t take into account was that children are pretty smart and they are “assholes” when they figure things like this out. So I had the benefit of being in the “smart” class even though I was physically handicapped so it sort of worked out good for me because the kids all knew that even though I couldn’t run like they could I was very smart so I didn’t get made fun of like possibly I would have been had it not been a known commodity that I was one of the kids from the “smart” class. But true to form as kids will be, as soon as we figured out the classes were arranged in terms of intelligence the kids took to referring to the different classes as the smart, stupid and in between. I am sure the intent of separating us kids by intelligence was to address the different needs of the kids as this was in the early 1960’s and addressing needs of kids based on their differing IQ’s and physical abilities was fairly new territory and I am pretty sure the school was trying to do the right thing but they didn’t know what that was yet, and maybe they still don’t but they at least have come a long ways from what they did when I was in grade school. There were 3 boys that were in my 1st, 2nd and 3rd grade classes that I believe were the reason for the teacher’s reevaluating the way the classes were divided. They were very smart and very busy boys, and disrupting class was their specialty and I think after 3 years of the teacher’s us “smart” kids had they were all driven crazy by those 3 boys antics in their classroom. While the motive on the part of the school administrators might have been a reasonable one but in practice it had a lot of problems, the least of which was “do you really want all the really smart kids in the same class?” When I started 4th grade each one of the “smart ass” boys was in a different class and all the rest of the kids were divided evenly and they started a system of the kids having three different changes of teacher’s in a day for Math, English and Social Studies to address the intelligence Factor. I don’t know what they do know because I have been out of school for a very long time but I suspect they don’t practice separation by intelligence like they did when I was in grade school. So in a way starting out my first three years in grade school by being in the smart class was probably somewhat helpful for my ego but it didn’t lessen my desire to be the “same” in my being able to do physical things. I have always wished I knew what it was like to be able to run, I was always the last kid around the track. When I went to my 20th year high school reunion I had one of the boys I went to first grade through high school with come up to me and tell me how glad he was to see that I seemed to be doing well because he remembered me as always being the slowest kid in class and said he had always thought that the teacher’s were cruel to even make me go out there and run when it was so obvious I had so much physical difficulties in doing so. It kind of made me feel good that he had that empathy for me as a child even if it probably wouldn’t have helped had I known it. The kids didn’t really make fun of me that much, partly I think because we did all go to school together for all those years and they knew me well which I do think makes it harder for kids to be mean if they aren’t anonymous. But I knew I was different and I also knew I was always the last kid to be chosen for anyone’s team and whenever I knew ahead of time that there was going to be one of the games like “dodge ball” that I hated and wasn’t any good at ahead of time I would try to get a note from my mother to say that I had to sit out of PE for the day and if all else failed I would tell my mom I was sick so I could stay home from school and not be humiliated. I turned into a real bookworm, for one thing I did love to read and enjoyed reading all sorts of stories about other people’s lives that always seemed much more exciting than mine and also it was something I could do all by myself, I cultivated a lot of hobbies that could be done alone so that way no one could hurt me. At least no one at school anyway, being molested by my stepfather would come along later on when I was in Junior High.  I became very good at what one CMT person calls “lying” but I call it self-preservation. One thing about this disease that confuses people, and allows those of us that have it to sort of avoid the truth, is that because it mainly affects the extremities our bodies are normal looking from the knees up and no one really notices that your hands are a bit skimpy on muscles unless you are trying to pull yourself up on the “monkey bars” so we can sort of pass for normal if we are really good actors and most of us are. For some reason people with CMT try very hard to hide their disability, well not really for some reason, it is because no one wants to be different or at not different in a bad way and to those of us with weak muscles being different means being physically weak. When I got older it wasn’t so important but as a child it was very important. Still I was a very busy and inquisitive child that didn’t let CMT stop me from doing a lot of things that I now consider myself brave for doing but I think I did them because I did have a curious mind that wasn’t able to totally accept that I was disabled. I took ballet lessons, I tried to learn to play the guitar but my hands were not strong enough to hold the strings down so I changed to piano and then in 6th grade I took up the flute and played it until I quit going to high school after having my second set of operations on my ankles and didn’t have my cast off before school started again for my senior year and I was then old enough to refuse to go with a cast on my leg like I wasn’t able to do when I was only 6. I did graduate by taking a high school equivalency test so I could go to college.

This only describes my physical own disability and not how I feel about myself or disabilities overall, but this was not always the case. I was born with my disability so I have never known anything else, I didn’t become paralyzed in a crash like one of my best friend’s I had for the last 31 years, I didn’t develop MS at the age of 30 like another friend, I didn’t have a stroke at 50 like another friend, I have always been disabled and therefore I don’t know what it is like to have ever of been able, so to speak. All of my life I have always watched people who were able to run with envy, I have never been able to run, I can’t even jog, so watching people who can run causes me to wish I could experience that, but the reality is I never will. But I can walk, and that is a reality that a lot of disabled people have never been able to do and I do appreciate that. I also do believe there is a difference of the perception of the different kinds of disabled people.  I have had many friends, and have many friends, that are disabled for various reasons.  I don’t feel more sorry for myself because I have never been physically able to do the things that people who have become disabled after having lived for ten, fifteen or thirty years of their life, I just haven’t experienced the luxury of having a normal body for twenty, thirty or forty years and I never will. I can’t ever walk up stairs without pulling myself up, I can’t pull my body weight up with my hands and I have never been able to run. I will never experience these things, it doesn’t make my disability any worse than anyone else’s it just means that all disabilities are different. None are better or worse, just that they are all disabling in one way or the other and that includes mental disabilities as well.

I wasn’t miserable when I was in grade school but I was a very shy and timid child but I was bright and did try to experience as many things as I could. I was a good swimmer, I didn’t have to have as strong legs as you do to walk, and I did pretty well in swimming competitions and diving, I didn’t usually win but at least I wasn’t always last.

1969 - Camping In Canada

1969 – Camping In Canada

I Want To Save The World – I Will Start One Person At A Time!

I would like to introduce you to some friends of mine that also have Charcot Marie Tooth. This is Amy and part of her story, help her if you can please!

Hello World!!

I have Charcot-Marie-Tooth (CMT). It is a hereditary motor and sensory neuropathy condition – a form of neuropathy that can begin between childhood and young adulthood; characterized by weakness and atrophy (wasting or loss) of the muscles of the hands and lower legs; progression is slow and individuals affected can have a normal life span.

As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. I swear I ran the mile 20+ times and could never do it. I would trip on “air” and in band was told I wasn’t “rolling” my feet correct, but never thought that I was different.

I am sure at this point you are thinking to yourself, if this is hereditary surly my parents should have known what was going on. Well, I am adopted, so I have no medical information on my birth parents and since the adoption was closed there is no finding out about it. My parents told me as a young child I wore special shoes to help me learn to walk and all but no doctor they took me to know what was going on. CMT is not common and only Specialist know about it. I have walked into doctor’s office and had to explain to them what I have and what it does to me.

Let’s fast forward a few years. I remember my husband asking why I walked the way I did, but I didn’t really listen to him and he never made a big deal about it, he just thought I was a “band junkie”-funny thinking back about that now. So as I got older I started falling more for no reason. It was getting harder to lift my feet and I was tripping on even more air. After I had our daughter (who is now 9) he pushed for me to be seen by a doctor to try and help me- I wasn’t fond of this since I thought I was fine and he was making a big deal out of nothing, but I went. So, this is when all the poking and prodding began. I went to my Primary Care Physician who sent me for an MRI and after the review referred me to a Neurologist who then sent me for a Nerve Conduction Test. Let me tell you that is the most pain I have ever been in. They take little needles and poke them in your skin then send electrical volts to see if your nerves react and how fast. It’s done all over your body – I had bruises everywhere. After this was done I then had be referred to a Specialist at the Medical College of Georgia to finally be diagnosed.

I was then almost in shell shock; I had to start physical therapy and had to be fitted with a pair of custom AFO’s. – Ankle-Foot Orthosis, it is a type of short-leg Brace to help support a weak ankle and keep it from rolling side to side but allows the ankle to go forward and back. It can be made either from a very hard type of thermo-plastic or it can be made from steel and leather. – Mine are plastic.

While they have helped with my foot drop, I have started losing my balance due to the fact that they don’t support and help keep any muscles that I still have, they just keep wasting away. I recently found a brace called Helios®. They are made just for people with CMT. I had to submit a Video and see if I would even benefit from them. Waiting on the response back seemed like it was taking forever. When I got the email telling me I was a candidate to be fitted for these I was so happy. They will help with my balance and stability and speed of walking. Some people have even been able to jog again!!!

I am 29 and still have a lot of life left to live. I have 2 wonderful kids who need me and I want to be able to do as much as possible with them. Insurance will not pay for these since they are “not needed” in their eyes. They are made out of Carbon Fiber and Kevlar. They cost $13,000 for the pair and I need around $2,000 for plane tickets and travel. I know these would change the quality of my life and help me stay mobile for many years to come.

I would appreciate any donation!!!! Every penny counts.

Here are two links to Amy if you can help her, thank you for visiting us, Michele



Amy and her family

Amy and her family

There is a lovely ending to this story, Amy did manage to raise enough money for the leg braces. This makes me very happy for her and wish everyone who needs them could get them, it is a sad state of affairs in this country there are stories about stars spending a million dollars for a bathroom remodel and a handicapped person who needs $10,000 to $20,00 so they can walk have to do without.

Horses Saved My Life As A Child!

Because of the disease I was born with that made me unable to run or climb things that needed hand strength which made me very miserable as a child because I was so terrible at PE class. It doesn’t seem like that big of a deal as an adult but as a child being different, in any way, is a curse as kids aren’t honest they are mean. I am not saying that they are necessarily mean on purpose but by saying whatever they think without the filters we learn to use when we are older that from the “mouths of babes” come very hurtful statements. I was lucky to have discovered riding horses at the very young age of six and when I was riding on a horse it gave me the sense of the power and strength that running and having normal muscle strength provides to those who are not handicapped. It gave me an entry into the “normal” world by allowing me to experience being as strong and fast as the next person when I was on my horse and allowed me to temporarily escape from being handicapped. As a child that was so important to my feelings of self-worth and I thank the beautiful and mighty horse for allowing me to experience the thrill of going fast and walking on rocky trails that I would never have been able to experience on my own legs. I think that horses can be very therapeutic to anyone who can’t experience walking on their own legs in the woods, or to climb a mountain, or anything that requires the ability to walk to truly experience the joy of doing things that require legs that work. If you have a handicapped child, or even a handicapped adult for that matter, in your life that hasn’t ever experienced the joy and power that riding a horse can give you please make the effort to let your loved ones have this experience. I have enjoyed the freedom that horses gave me from the age of six on into my adult life and have had many a wonderful trail ride that allowed me to experience the beauty of nature up close and personal from the back of a horse. Freedom is the wind in my hair on the back of a strong and beautiful horse.

Me & Mary Lou on our horses

Me & Mary Lou on our horses

Me & Mary Lou on our horses

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.