Hello everyone! Um, I guess I'm not really sure what to say. I have CMT. I was diagnosed when I was 30, although I had known something wasn't quite right with me for years, however, none of the docs that I saw really wanted to address it. At the time of my diagnosis, my son was 17 months and my baby girl was just barely 2 months. I was devastated to say the least. While this is a genetic condition, I am the only one in my family that has it. I decided at the time of my diagnosis that I was just going to ignore it and go on working and living and everything would be fine and nothing would change. HaHa. Fast forward 4ish years. I was/am a CNA at a county run nursing home. I worked full time, 12 hour shifts, in the rehab/hospice unit. I LOVED my job, I was good at my job. I'm to the point where I can't do my job safely anymore and the realization is absolutely devastating. I have been on a medical LOA since right before Thanksgiving. At first it was awesome, it felt like vacation, mostly because for the first ever I got to spend Thanksgiving, Christmas Eve, AND Christmas Day with my family. Now that we are past the holidays, the vacation feeling is over and now I just feel kind of bummed. Don't get me wrong, I love my family. I love that I get to do the getting ready for school in the mornings, and bath time, and bedtime every day now. But I'm kind of going stir crazy. Being a stay at home mom was never part of my plan, and while I love being here for my fiance and kids, I feel like I need to do something more, something just for me. Maybe that's selfish. I'm not sure. Physically, I don't have any braces or anything like that yet. I'm doing physical therapy once a week, which is exhausting but kind of cool. I guess I'm just looking for a connection from this group. I don't know anyone else who has CMT. I don't know what else to say at this point, other than thank you for allowing me to be a part of your group.
Jewels, I know that anybody with a difficult and chronic condition like CMT will be able to relate to what you are saying. I'm sure that a few more of your fellow CMT-ers will welcome you before long.
Perhaps you could post a discussion that contains a question to answer. That may bring some new friends to your electronic door!
Again, a warm welcome to you!
Seenie
I work for Chrysler and love my job, I'm 48 and as my symptoms are getting worse it scares me a bit as to how long I can provide for my wife and I.
I have just been off work, and monday morning will be D-day. Back into the trenches and see how I do.
I think moderate exercise and stretching are helping me some what.
I hope things work out for you.
WULF
Welcome.
Hi jewels,
I get you completely. I have the very same experience as you, even I don’t know, even physically ever met, anyone with CMT ! Perhaps that’s the reason why there’s no cure, as yet. There isn’t a market for the cure given that it’s such a rare condition.
This group can be a great help. We will be able to understand your problems more than, perhaps, anyone else you’ve physically met.
Warm welcome to you.
HiJewels I was diagnosed very late in life, but was happy to know finally why i had a lifetime of falls and foot fractures. I am wearing braces now and can walk so much better. My biggest problem is losing muscle in my legs and strenght in my hands. The good thing is that i can still get around. Hope the best for you and that you dont get any worse.Sorry that you cant work anymore .I am pretty much a homebody, because i had a very bad fall that resulted in a fracture. Try to think of your self as being free of the outside world and in your own comfort zone. Hope i helped you.
It is so tough having CMT, everyone around you is a doctor, I want to ask people who tell me I look fine, oh, you're a doctor? I am so impressed that you can diagnose me from just a quick look.
Don't let others get you down, nobody lives in your shoes and they don't have a clue what a struggle life can be.
The neurologists took 15 years or more to finally diagnose me because I that several other health issues that created a smoke screen. Be patient, be humble, I'm fine with the first and have fought the second for so long. You need humilty to realize, no matter what you "think" you can do and what your body can "actually" do.
I hope you can get some support from friends!
Hello Jewels nice to meet you. I'm new to the group also. I'm 40 and just found out last year I had CMT. Like you, I've always known something "wasn't right" but just chalked it up to being out of shape and thinking that I should just try harder and work out more. Little did I know this was causing more harm than good. I am also the only one in my family with CMT and am now at a crossroads with my job. Best of luck with your physical therapy and welcome to the group!