Living with CMT

[Chelledan1127]

I’m 45 years old and I’ve been diagnosed with CMT it was about 6 years ago. I have poor balance. I’ve had tons of surgeries since I was a child on my feet. I also have a lot of anxiety, depression and my hands go numb. I get hemi-facial spasms too. Pain in my neck and a lot of issues on the left side of my body. My family doesn’t understand how I feel, yah I look normal but my body and mind doesn’t feel normal. How do I get through to them??

[Hidden]

Unfortunately we can’t make people understand what we deal with. One thing I’ve learned is I just have to keep moving and take one day at a time. It doesn’t matter that we look normal, we know what we deal with it we just have to do the best that we can and be positive!

I know that’s not really going to help you much but that’s what I do, That’s all that I can do!

I’ve come to understand people That don’t deal with health issues or constant pain they cannot relate, they cannot understand, and that’s OK!

[spabbygirl]

I've found that too. I did once see on tv a hospital who had made heavy, restricting, things to wrap around arms & legs for student's to put on to see what it was like to have a neuropathy and I thought what a good idea that was but otherwise I don't know. It's so easy for others to forget, or think we are shirking jobs isn't it?

[cyprus9]

Hi ! I agree with the previous comments ! I have had operations on both feet to try to correct the symptoms , have cramps and awful balance and tiredness ... keep moving and focus on your self .. my biggest issue is I fall over really easily.. so scarred legs , dislocated shoulder but there is no cure as you know

[donnie7]

I have had a lot of operations on my feet since I was 11 and now I am 50. Fortunately my parents let me be independant and helped me when they could. Sometimes friends and family didn't see the mobility side and would walk on ahead so I had to ask for help if needed. It wasn't intentional on their part. Also at school the Physical Education teacher said I had to do the same sports as others and another teacher was more understanding as I could only do some sports especially after foot turned in. The last operation 9 years ago fused my ankle and straightened foot and I use a walking stick which I need. In the last few years or longer I have had to work through independance issues as after a fall more tentative with the ground and slower. My husband is a good help and Carer. I see an Exercise Physiologist and he helps with balance and strength exercises I can do at home. Saw him today and more strength in leg and more heel toe as I flopped my leg and drop foot. Quite a surprise. Also see a Physiotherapist. Are you able to see a Physiotherapist or Exercise Physiologist and they could do out a letter or report of your CMT condition and exercises they could make your family and friends more aware of what CMT is and your progress. All the best. I live in Australia.