When I’m walking, I walk with my ankles caved INWARDS, with my feet pointed OUTWARDS (if you’re confused, I can show you a picture or video of how I stand and walk 
). So then, I’m scolded. So to try to fix it, I tilt my ankles OUTWARDS and my feet point kinda straight, but usually pointed INWARDS. And, again, I’m scolded. So, here’s my question; how do I explain to my parents that there really isn’t an in between? I don’t have the strength to walk perfectly “normal” like the other kids do. My mother has inwards ankles, too, but I have them the worst between she, my older sister, and I. I figured she of all people would understand, but I guess I have to explain it to her! hahaha! How should I go about doing this?
YukiDev;
CMT presents in many ways, but especially in the lower and distal extremeties usually more prominent!
I have weak ankles and it causes us to walk different and also to have foot drop. The balance of muscles tendons ligaments and nerves are all a factor.
I have recently gone to Wal-mart in the pharmacy area and purchased Dr. Scholl's inserts for shoes, by getting on a machine they had there and it anyalyzed my feet and pressure points to tell me which inserts would work for me the best for the weaknesses. ($50.00) In the past, I had an ortho tech build my inserts and they lasted years but he is not availalbe any longer and its hard to find one who understands my foot issues.
I also wear a women's boot that supports my ankles very well; Other than that you might have the podiotrist to help direct you in getting good support and shoes. My boots straighten up and support my feet to shor up the ankles . Most important, CMT'rs cannot wear just any old shoe, and definently not "fashionable" foot wear; you need some good sturdy support in boots or solid shoes to keep ankles up right. (Magnum brand police women's boot is what I have and in past used Justin or Ariat ankle western boots)
I dress in attire that coordinates with a style that is in same flair; I went to wearing broom stick skirts to over my leg braces and wearing the western boots looked fashionable but was supportive I wear leggings so the boots don't look so out of place. I have never been abled to wear sandals or "fashionable" flats etc. b/c that is just going to be ba dfor your feet and posture!
Take care of your body now, listen to your body's needs so not to do more damage for the future. I cannot run anymore b/c I did not know when I was young to take care of my feet and went bare footed most of time b/c hated shoes. But, now realize I hated shoes b/c they did not support my feet and fit for my development problems due to CMT and it made it hard to walk even more.
Hope this helps and hope you can share it with your Mother and it starts making sense to them to get you the help.
CM
CM said:
thanks a ton! this really helps a lot :)YukiDev;
CMT presents in many ways, but especially in the lower and distal extremeties usually more prominent!
I have weak ankles and it causes us to walk different and also to have foot drop. The balance of muscles tendons ligaments and nerves are all a factor.
I have recently gone to Wal-mart in the pharmacy area and purchased Dr. Scholl's inserts for shoes, by getting on a machine they had there and it anyalyzed my feet and pressure points to tell me which inserts would work for me the best for the weaknesses. ($50.00) In the past, I had an ortho tech build my inserts and they lasted years but he is not availalbe any longer and its hard to find one who understands my foot issues.
I also wear a women's boot that supports my ankles very well; Other than that you might have the podiotrist to help direct you in getting good support and shoes. My boots straighten up and support my feet to shor up the ankles . Most important, CMT'rs cannot wear just any old shoe, and definently not "fashionable" foot wear; you need some good sturdy support in boots or solid shoes to keep ankles up right. (Magnum brand police women's boot is what I have and in past used Justin or Ariat ankle western boots)
I dress in attire that coordinates with a style that is in same flair; I went to wearing broom stick skirts to over my leg braces and wearing the western boots looked fashionable but was supportive I wear leggings so the boots don't look so out of place. I have never been abled to wear sandals or "fashionable" flats etc. b/c that is just going to be ba dfor your feet and posture!
Take care of your body now, listen to your body's needs so not to do more damage for the future. I cannot run anymore b/c I did not know when I was young to take care of my feet and went bare footed most of time b/c hated shoes. But, now realize I hated shoes b/c they did not support my feet and fit for my development problems due to CMT and it made it hard to walk even more.
Hope this helps and hope you can share it with your Mother and it starts making sense to them to get you the help.
CM
l am so very sorry that your mom does not understand and she is giving you grief over your walking issues. Hopefully you will be able to get some answers from Drs and gain support by reaching out to others. l don't have a lot of issues walking just the pain from neuropathy and arthritis in my big toe.
~Tami
I know is very hard to find someone to understand our sikness. Me too i have sister and brother have it but less than me. They feet is less crooked and they more stonger. My brother said do more sport … . They don,t understand really i push my self but i can not more stonger. It,s very bad you mom don,t understand you. It,s our limit the nerves dont conduct to our muscle properly. Goog luck to find someoneto to help you and we have to listen our self limit.
Yes, my feet turn out badly and tend to walk on the insides of my feet, hence the duck nickname. I was always very clumsy and had a weird walk, i had a cane for a couple years, now I wear carbon fiber braces (work really good for me).
My mom also never understood, my father was adopted and has only more recently developed symptoms and was diagnosed. After 15 yrs being told it was in my head, my dad found out and as soon as I read about Cmt I knew. I was 35 and pregnant when I and my unborn daughter were finally diagnosed, now my oldest daughter is showing symptoms, so I am praying the middle got lucky. It's HARD when no one understands or believes you, I am here anytime you need to talk. Best Wishes. Hang in there.
My husband noticed my feet before I did. He nicely pointed out one day "why are you doing that with your feet?" It's just the way I always remember standing. I have AFO's now and use a cane, I walk with more confidence now. My cane is spiffy looking, and my AFO's are covered my wonderfully flowing skirts. Even without the extra camouflage they are what I need. It really doesn't matter what others say or think, you have to take care of your self. Best wishes to you.
I have the same! AFOs and a cane. I see the cane as a cool accessory. I got one that lights up. :-) The AFOs are just so necessary and I always wear long pants. I got really self-conscious about my skinny legs in high school so I stopped wearing shorts and haven't worn them for the last twenty something years!
Veronica said:
My have AFO's now and use a cane, I walk with more confidence now. My cane is spiffy looking, and my AFO's are covered my wonderfully flowing skirts.
My younger brother was corrected constantly. I think it was very hard for him. At only 18 he fell down a flight of concrete stairs. He did this at High School!!! He broke his leg. At follow up appointments, the very bright Orthopedic Surgeon noticed his unusual gate; it was 1987. So began the long journey forward and backward for our family. My dear Great Grandmother would get SO dressed up for church on Sundays. She would then put on her tiny “keds” sneakers. She fell down in the kitchen often and had many bad bruises. She fell so frequently that the small town where she spent her whole life began to gossip about my Great Grandpa suddenly deciding to “beat her up” after a lovely and peaceful marriage of 50 years! She was tiny but she was so strong. I don’t know how she did it. She would NOT use a cane. She would pretend to sweep all the time so as to use the broom for support. As a child I was amused at how much time she spent sweeping: everywhere and everything. Great Grandpa always worried.
This disease is a pain in the butt. I have ongoing issues that I won’t list now. But I think… Everything that goes wrong is the Body Working really Hard to keep me walking… All the weird stuff is our bodies doing whatever is possible to make sure our lives are the best that they can be. Too long of a story! I’ve been without an understanding ear for too long! Sorry.
My family does not get it either. It has been 20 years and they think I’ve just gotten lazy.
Thank you everyone, it has been a hard summer for me. I haven't worn my orthotics lately because of the summer. It seems like my feet have gotten worse over the season. I've been walking barefoot and in flip-flops because of the weather and swimming and such. I also recently got my first job. I work at Target now and am being highly supported by my team members, but it's still a very physically demanding job. I have to either push rows of carts in, sometimes carry heavy things by myself which I've hurt myself doing, and sometimes I have to just stand at a register, accept money, and give change (which has gotten very hard because I can't grab change well). I just really am going through a hard time right now and could really go for some more support while I try to talk to my mom about getting some tests done by a neurologist.
Thank you to everyone who has responded,
Yuki
As far as your job goes, just remember if you are struggling or hurting yourself, you need to ask for some accommodation. Given you have CMT, Target will need to reasonably accommodate you to make it easier to perform your duties (like giving you a stool if standing for prolonged periods is a problem). Please have a look at the Job Accommodation Network CMT page from the Office of Disability Employment Policy (part of the US Dept. of Labor). There are a number of ideas for accommodation there (some might not apply to you) and they can help if you have trouble with Target giving you reasonable accommodations for your limitations. Don't over do things as an injury can be a major problem for us CMTers!
Yuki;
Do listen to your body and adjust accordingly. Chad is right, you should make the work place aware of your needs and find ways to be able but make them aware so you have understanding.
With understanding we CAN do more if peopel will make allowance for our differences.
CM
Wow just 3 short months ago, l said l don't have issues walking. Man has my body started to decline rapidly. New orthotics and have started PT for my legs. l am having a lot of fatigue and noticed that my gait is getting more unstable at times, especially if l am tired or hurting.
Good luck to you with Target, Corp. l worked for them a while back. Not so accommodating as you would think. Back then l did not know l had CMT though.
Tami
Sure know this disease takes our ability at different rates at different times; I have plateaus but then sudden progression over past 18 yrs. Its constant grieving loss and adjusting lifestyle to accomodate! But, for sure one thing that gets stronger and tougher is Character! Sometimes it just turns be into a "character" LOL
Hus to everyone; we sure relate!
You are NOT alone! CM