I am having a hard time lately with some people saying to me "oh you are so lucky Carter and Zach really don't seem to be affected by CMT". They basically imply that it really doesn't affect us. Well, haven't they ever heard the saying don't judge a book by its cover? Just because Zach and Carter don't need braces right now and can still play, run and swim does not mean they aren't affected. What they don't see or notice is......
1. Because Zach has CMT he is a lot slower than his peers, trips over his own feet and doesn't jump well.
2. Zach has a hard time with shoes because of his arch, wide feet and sensory issues. Socks have to have no seam.
3. Zach has a hard time with homework because his hand tires quickly and cramps.
4. Carter has very high arches,hammer toes and he walks on his toes because of CMT.
5. Carter suffers from fatigue.
6. Carter gets pain in his feet, legs and knees. Sometimes so bad he has to lay down.
7. Carter cannot stand or walk for long periods without pain.
8. Carter also has a hard time with homework and taking notes because his hand tires quickly and cramps.
9. Carter's toes are numb and can cause him to get sores.
10. Buttoning shirts or trying to open jars is hard.
11. Carter had to change his school schedule because he cannot participate in Cross Country.
12. I can keep going but won't....
Can Carter run? Yes, he can but he is in pain the whole time. Did he run a mile in 5:31 on Saturday? Yes, he did but he did it in a lot of pain! What you have to realize is... he was a Cross Country runner for 1 1/2 years. He had the team and their parents behind him and the adrenaline kicked in. Could he do this everyday? Absolutely not! He has a hard enough time walking a couple blocks without tiring or pain. Carter has always had a high tolerance for pain and doesn't like to "quit" or be told "can't". He rarely will complain to anyone outside of our family, instead he will deal with the pain or numbness on his own. He just doesn't want to be "different".
What the outsiders don't see is....
Carter in pain after running not only in his feet, legs and knees but in his chest.
Carter in pain after trying to go to Six Flags with a friend. So much pain he couldn't walk anymore and slept for 15 hours.
Zach coming home sad because he is the last to be picked in PE.
Zach having to soak his feet in Epsom Salt to help his feet.
The bottom line is I am sure I am not the only mom, wife, sister, grandma, etc..out there there that has been presented with this statement. I am sure I will not be the last. I only hope that in the future more people are aware of the disease and the impact it has on people. Not everyone with CMT is affected the same way, some people need AFO's, some don't, some can run, some can't, some walk on their toes, some don't, the point is don't judge! It is a progressive disease!
Until Next Time...............TRY WALKING IN A CMTer'S SHOES JUST FOR A DAY THEN TELL ME HOW IT AFFECTS US!
P.S. sorry for rambling tonight just had to get it out!
"STAY STRONG, BELIEVE"
hi my name is shirley i know how u feel my son was dignosed last january what a year love the bracelets must get some for my famly
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