How to take life and CMT

Especially in the morning I feel myself very depressed when I have to take my braces, when I'm fatigue, dont sleep etc. .

But then I remind myself about vers from Luk 14:27 in the Bible: And whosoever doth not bear his cross, and come after me, cannot be my disciple. I know, it's too easy to say this but difficult to live through. I protest often..

It’s a wonderful philosophy, but it’s human nature to protest a life changer of this magnitude. I think you ALL handle this nobly.

I too moan and groan and complain. Am depressed. Can't sleep. Thanks for sharing the scripture HM.....a good reminder.

My philosophy has always been: Things will either get better or more interesting. CMT is in the "more interesting" category. It won't get better, but it does get more interesting.

But I am getting better at dealing with CMT. I may lose my balance more often, but I have gotten better at catching my self and reaching for sturdy objects to stop my fall. And, for when nothing else works, I am better at selecting soft safe landing spots and aiming for them.

And CMT does get more interesting.

I am sure this must be horrible. I personally don't have CMT, however my son does…..and nothing will stop me from finding out more information, trialling different things. He has hammer toes, deformities in his feet, foot drop, loss of balance, can't jump 2 times in a row, can't run, can't walk further than 10 metres, weak legs and general weakness, can't open doors as his hands are now affected too. However, he is my hero. Everyday he bounces out of bed. He does more exercise than anyone I know. He loves his 'lego socks' (braces - part superhero lego man, part person) and desperately wanted to get some for his brother - who also desperately wanted some. Very cute. He gets up and does Swimming, ball sports, speech therapy, yoga, stretching of his legs, kids gymnastics, jumping on our trampoline, OT and then the general kids stuff….indoor play centres and outdoor playgrounds. He eats (yes eats not swallows), Vitamin E capsules and Vit B12. He wants to be the fastest person on earth with his lego socks - which if that is what he wants, that I know is what he will do. He gets tired and has down time, but he bounces up. He is the most amazing person I have every come across, he is here to change my life and others around him. You are too. To someone you are an inspiration, you have a purpose. We will find a cure (BTW, I am a fan of Curcimin, B12, Q10..), but whenever I am sick or in pain or tired or sad, I think of my son, of you, and I pull myself together. My son is 3 years old.

Dear Mom of 3 year old,

My heart goes out for your son and for you.

At least you know the situation and how to handle it. When I was very young my mother knew I had weak ankles and hammer toe, but after many doctor visits did not know the reason, other that just "weak ankles and deformed foot". I was, even after many doctor visits, not diagnosed until last year at age 67.

I think braces would have helped me when I was growing up. They help me now, however. I hope your son will continue to be active and enjoy activities.

I hope you will "fall proof" your home, particularly the bathroom. Grab bars in tubs or showers are important, not just for people with CMT but for the whole family. After all, anyone can slip in a tub or on a wet floor.

Most of all, I hope your son - and you - will continue to enjoy life to the fullest.

John Shaw

Cary, NC