I was never able to ride a bicycle as a child. Cannot step up into a cab or swing leg over with out holding on to get on cycle or into a vehicle. I had to watch my feet when walking so I did not trip or stumble over my own feet. My walk was described like "prancing like a gaiter horse".Standing still in one spot is harder than if I keep moving along. Anyone relate?
Hi CM,
As you all must know by now, I do not have CMT, so I rely on all of you, for a better understanding of this disease. I have watched many of the youtube videos of the CMT gait, and it is easy to see that balance would be a great challenge.
I am often unsteady and like VietnamVet, find that the Newbalance 926 sneaker has helped me tremendously. It has a 'roll bar' built in that keeps your ankle from turning. I go to a show store that measures my foot, who carry a variety of widths. These particular shoes do not have a significant inward curve by the arch, they are built out, and give you a more solid foundation. I know that we have both posted about these shoes before, but there are more and more new members that this info could help. Here are photos of the various ones
I really cannot say enough good about them. I know they are not exactly the beautiful shoes we gals dream of, but hey, if they keep you on your feet, that's good enough for me!
Hope this is of help to someone
Wishing you all well,
SK
Yes, that was me too exactly. My uncle and his daughter had what they used to call 'hoof foot'. Him taking about size 5/6 (English sizing) and her taking size 2. I was size 5 and my feet weren't quite as bad, but my arches have always been very high. Also I could never wriggle my toes. All I could move was my big toe and then with quite a bit of effort. I used to think it quite odd seeing people move their toes independently of each other. I never realized until recently that this is the norm. Also, I have always had great difficulty walking downhill (and still very much do). I could always walk better if my toes are higher than my heels (and still do). Running also was almost impossible no matter how hard I tried. I got through life with this having just a small effect on me until I broke my arm in 2002 and then balance problems really started. Soon after numbness in my feet started and has steadily got much worse.
I was active in sports when younger, my onset of CMT began when I was in my fifties. I had a big problem with my left foot as it kept turning to the outside and would "roll". I could not wear any shoes with soft soles as they caused me even greater problems with the supination. I then found new balance "rollbar" shoes at: http://www.onlineshoes.com/roolbar-shoes,womens-search
I have greater stability with these and Online has the best prices of anyone on the web. I can't say these shoes will help everyone but I know the dramatic effect it had for me. If you have a "Good Feet" store in your area, they carry these shoes and it would be beneficial to try a pair on for size and comfort before you purchase. I would however encourage you to buy online with Onlineshoes.
I hope you have success and am looking forward to a followup.
My Kids have similar problems. My daughter has lost the ability to lift her one leg, can not bend it at the knee. To get her into the car I have to pick up her leg and put it in first then balance her to get the rest of the way in. Same with going up any steps. She has to drag the one foot. As for my son, he seems to have a nervous twitch and if he hits his toes on a rug or anything else, he will fall unless there is something to grab onto.
I can definitely relate to the not being able to ride a bike. I was finally able to manage it by the time I was eleven. I still had trouble getting on or off and many times I fell off of my bike. Another thing I had as a child was horrible hand writing. I just couldn’t coordinate my fingers. I still write terribly and now I can add in shakiness to the mix. I try to print as much as possible. Tying my shoes was also trying. No one knew what was wrong and just attributed my problems to not trying! Anyways,I was never good at sports,especially any type that involved eye hand coordination. It wasn’t until I had one really good fall that they began to suspect something. I wish you well on your CMT journey. We all share common concerns,but also differences in presentation. Karen
VietVet said:
I was active in sports when younger, my onset of CMT began when I was in my fifties. I had a big problem with my left foot as it kept turning to the outside and would "roll". I could not wear any shoes with soft soles as they caused me even greater problems with the supination. I then found new balance "rollbar" shoes at: http://www.onlineshoes.com/roolbar-shoes,womens-search
I have greater stability with these and Online has the best prices of anyone on the web. I can't say these shoes will help everyone but I know the dramatic effect it had for me. If you have a "Good Feet" store in your area, they carry these shoes and it would be beneficial to try a pair on for size and comfort before you purchase. I would however encourage you to buy online with Onlineshoes.
I hope you have success and am looking forward to a followup.
khill234 said: I too was very athletic & had zero cmt symptoms until my late 50"s.Two weeks ago I replaced my old AFO'S with a pair of new carbon fiber AFO'S. I would say the new ones give me maybe a 20% improvement over the old;
Has anyone tried accupuncture?
VietVet said:I was active in sports when younger, my onset of CMT began when I was in my fifties. I had a big problem with my left foot as it kept turning to the outside and would "roll". I could not wear any shoes with soft soles as they caused me even greater problems with the supination. I then found new balance "rollbar" shoes at: http://www.onlineshoes.com/roolbar-shoes,womens-search
I have greater stability with these and Online has the best prices of anyone on the web. I can't say these shoes will help everyone but I know the dramatic effect it had for me. If you have a "Good Feet" store in your area, they carry these shoes and it would be beneficial to try a pair on for size and comfort before you purchase. I would however encourage you to buy online with Onlineshoes.
I hope you have success and am looking forward to a followup.
YES!!!! Oh my stars can I ever relate. I had to go out and about today and we weren't even a block from my place and I could hardly handle to vertigo. And yes getting in and out of a car or a booth or up from a chair is a chore. I look at the ground all the time so if someone sees me and waves I obviously don't see them because I don't look up very often. I was teased a lot as a child. Was told I walk like I am drunk. I finally learned to ride a bike when I was around 14 years old but had many mishaps and still have the scars. When I stand still I feel like I am still in motion and am constantly "balancing"
CMT was not heard of when I was a kid. Growing up was pure hell.
WOW! That got the conversation going. . . GREAT! A little more to add to the list. . . I walked on my toes til age 11 or 12; It was admired and thought that I would be a ballerina one day! LOL Grace was not any part of me! Could never walk on heels; I had no balance, tripped over nothing and was thought very clumsy and gawky! Brother teased me for having "knobby knees" (appearance of knobby knees was due to lower legs not developing muscles and counter balanced muscles not present.) My hands always shake especially if I try harder makes the shaking worse. Handwriting was a real trial but was determined as long as could hold pencil like I wanted and took extra time. I became very good at handwriting (later taught myself Calligraphy) b/c my teacher used to whack my hand with a wooded ruler (the kind with a metal edge) for not holding pencil correctly; Back in the day Handwriting was a subject I won Penmanship awards in spite of her insistence I did not have correct form. LOL I marched in the marching band in junior high and H.S. despite having to learn my music by memory so I could watch my feet and not to trip. One big thing I have "thanks to CMT" is character! I can also be a "character" b/c of CMT! LOL
My sister walked on her toes too as did other family members. It was so strange but we just thought it to be a phase. I can't walk on my heels, no reflexes and yes I am a "character" I think it's so no one will "notice" the physical stuff and they will just think I am sooooo funny!
http://www.emedicinehealth.com/motion_sickness/page7_em.htm
http://www.walgreens.com/store/c/sea-band-wristband/ID=prod2662944-product
https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=wrist+bands+for+vertigo
I was a car sick kid since birth, nausea, vomiting, vertigo.
These little bands have helped me more than anything I have tried, and I have even gone to the EMT, gotten those patches that you wear behind your ears, and still had my head in the bag the whole time I was on the plane.
These little babies are the ticket! I can even sit in the back seat of the car and read, and NOT get carsick!
braylin's gramma, PLEASE promise me that you will get a pair! Don't make me come out there! LOL!
WOW!!! I have never heard of this! It would be perfect for me as I have such a hard time with side effects from meds. Thanks so much for the scoop SK!! Big Hugs for this fabulous info!
SK said:
I was a car sick kid since birth, nausea, vomiting, vertigo.
These little bands have helped me more than anything I have tried, and I have even gone to the EMT, gotten those patches that you wear behind your ears, and still had my head in the bag the whole time I was on the plane.
These little babies are the ticket! I can even sit in the back seat of the car and read, and NOT get carsick!
braylin's gramma, PLEASE promise me that you will get a pair! Don't make me come out there! LOL!
I too say thanks for the info. I will get a pair as I HATE riding in a car and ride with my eyes shut and head up to a vent to keep from being motion sick! We are getting ready to go to Texas soon to bring my husbands Mom back so will be getting these and maybe actually enjoy the drive this time!
Hope it helps, I keep 2 pair in the car as they are easily laid down and forgotten! My grandson wears them when he rides with me and never gets sick, he's probably worse than I am with car sickness!
BTW, these should fit tightly, make sure the button is in the right place!
braylin's gramma, I was sure that I told you about these before, that is why I was fussing you! OOPS! Must have my wires crossed again! Oh well, you know by now that I'm at least half nuts! Hope these help you and CM!