This is just a little (huge) intro since I'm new to the group. I'm a 42 year old man (boy) with CMT1A.
I was diagnosed with CMT when I was around 10 years old by an extremely good pediatrician. At the time we didn't know about anyone else in the family having it. As my mom got older and had more problems with her feet and legs, doctors would attribute her problems to bone deformity, lack of activity, poor nutrition, and a host of other things. 30 some years ago there wasn't much info available on CMT in the public (no internet). Eventually, my mom and maternal grandfather (her dad) came to learn that they had CMT as well as me. Many years later both my mom and I would get genetic confirmations of CMT1A.
Of the three of us, I'm the worse off and I was born with symptoms. I had arched feet at birth, my legs turned inwards and I had knocker (bony) knees. I was in a half body cast as a baby! I was never good at physical things as a child (sports and field days) but with so much emphasis on them, I tried anyway. You should have seen me fail on the basketball team when I was in elementary school - arms and hands weren't strong enough to throw baskets and legs and feet couldn't jump - I was awful, but I tried anyway. I spent alot of time in scouting instead and did hikes and camping through most of my childhood (still very physical activities) - I look back on those days and wonder how I kept up with everyone!
I've always been very skinny and my super thin legs have always embarrassed me. I rarely wore shorts in my teens and quickly switched to combat boots and baggy pants in high school. Even though I knew I had "an inherited disease" I didn't really know what it meant. I was always just me. Light on my feet, unbalanced, awkward, tired, but charismatic enough to have a few good friends and lots of acquaintances and bold enough to try things I might fail at (and I often did).
My dad, uncles, and sister were all in the military but I couldn't get in because of CMT. I instead worked at retail jobs, spent some time in college, self-taught computer programming, then worked my way up in the software industry for the last 18 years. It's a good thing I was able to do that because there is no way I could have done a physical job. Now that I'm in my early 40's I'm getting fatigued bad enough everyday that I've had to step out of my management role, cut down to four day work weeks, and reduce my workload significantly. Fortunately, my employer is one of the best in the world and has accommodated me significantly. I think my stamina will keep decreasing until I'm forced to go on disability. Maybe in five years... Maybe it ten. It's hard to tell since the progression of CMT is so variable. The last 10 years I've had significant progression (stress?) but the prior 15 were not so bad. Hopefully by the time I have to give up work, I'll have saved some money and be able to make ends meet (though where I live now is incredibly expensive - making it hard to save much).
I started going to a CMT Center of Excellence (there are a few of them around the country) recently and learned alot of things I'd already figured out myself. It was nice to hear my workarounds and compensations validated by professionals though. Now that I know what CMT is all about (I've done tons of research in the last 10 years - I have alot of info on CMT in the old noggin), I think about what I'm doing and how I'm doing it alot more and have stopped expecting so much of myself. One thing the doctors and folks at the CMT COE taught me, CMT is first and foremost a disease requiring energy management. We use more, need more, and have to monitor it closely. If you keep that in mind at all times, life gets a little easier (not easy - just easier).
Well, I hope this wasn't too long. I've got a CMT blog I write to sporadically and I've got maybe a dozen or so entries sitting there waiting to be finished. If you have a chance, check it out. Say hi if you like. I know alot about CMT, more about CMT1A, and I'm happy to share what I know with everyone here!
You're right about the charisma! I bet you are much loved by all!
Thank you so very much for posting and telling you story. I do not have CMT, I'm just a helping hand. I picked up this group that was ready to be closed to inactivity, and said if anyone needs a support group, it's these people. Let me give it a try, see if I can bring it back to life!
Hopefully you will help me to do this! I can always use a helping hand and a charmer! LOL!
I worked retail most of my life, big ticket commission, major appliances and furniture. Loved it!
I welcome you to post your blogs on our Ben's Friends Blog site, just click the blog tab at page top, we want to hear from you!
Wishing you health and happiness,
Here are a couple of discussions you may want to check out
Well thank you SK!!
I've done a lot of scouring the web for CMT stuff over the years and it was only recently that I found this site. I hadn't heard of it before. I think that's a good sign though. If it's becoming more visible on search engines it could likely help boost membership. I haven't ever joined any "local" (live) support groups but I was thinking I might someday. Honestly, I like being on the web more. If I do join a local group, I'll mention this place. I plan to put a link to here on my blog too but alas, my blog is quite obscure and I don't think it will generate much traffic to here.
I'll think of some places I can post to get some more visibility to this site... Thanks for the well wishes!
It is a good sign! Like I said, feel free to put a copy of your blog here on our site, in the blog section.
You all need to stick together, so there is no obscurity!
Yes, the web is so convenient, you can jump on any time of day!
Chad, your story is very moving -- thank you for sharing it with us. We're very happy you joined us; it's wonderful when someone has a desire to help others come to terms with their disease and learn to cope more easily. Best wishes!
I've read your website Chad. It's great and I recommend it to anyone reading this. I imagine you have hero status in your family and to all those who know you.
What a great addition to this group you will be! We are so glad to have you bring your knowledge to the table! CMT is one of those on going discussions and the more contributions the better! You sound like a real Awesome young man and definitely a contributor in life!
I too had things from birth, but always explained away as no one in family knew of CMT or anyone else in the family who had it. When diagnosed at age 40, Oct 97, it explained so much in my life experiences and then realized my paternal grandmother had had CMT and no one knew.
Since that time, my youngest daughter was confirmed by MDA as having CMT1X like myself. But, after much research and study, I suspect I have more than one type and passed one to daughter and possibly different type to my son. (MDA tested him, and both times inconclusive) My granddaughter show possible symptoms as well. I find knowledge and understanding how to manage your energy is the real key as well! Mutations are being learned about all the time.
I am an Advocate of CMT Awareness, and have been a support group leader in the past. I do a lot of online support as well! I find many of the CMT people I meet become like family as they understand and relate to things about you that your blood relatives do not!
Welcome to the group and to the little family that is fast growing here at Bens Friends! ~~~CM
We an always handle a caped crusader or ten around here!
@Wolfes Here is a discussion about a CMT center of excellence, maybe this will help you?