Friday, September 15, 2006

Walking, feet, and shoes!

The new school year has started for me, and that means I'm being forced to be active! (not active at all really, but I do have to walk around some.) Unfortunately, I've found walking has gotten a lot more difficult for me. When someone asks me to stand up, I can hardly concentrate on anything but when I'll get to sit back down. Standing didn't used to be a problem, but it also depends on how long I have to stand. I tend to stand on the outer sides of my feet a lot.

Speaking of feet... CMT feet facts:
High arches are highly common in CMT, and are often the first sign that someone has it. However, "flat feet" are occasionally seen.
"Hammer toes" can also occur in someone with CMT: "A hammer toe is a deformity of the second, third or fourth toes. In this condition, the toe is bent at the middle joint, so that it resembles a hammer. Initially, hammer toes are flexible and can be corrected with simple measures but, if left untreated, they can become fixed and require surgery.
People with hammer toe may have corns or calluses on the top of the middle joint of the toe or on the tip of the toe. They may also feel pain in their toes or feet and have difficulty finding comfortable shoes. "

My feet are pretty good examples of CMT feet. I have very high arches, and toes that are trying to become hammer toes, but I won't let them!

Now, I blame my walking troubles partly on shoes. When I'm not wearing them I can walk much easier (with less falling troubles/worries), so they have to play a part. Shoe shopping is a dread for me. My feet are very hard to fit, and a lot of shoes with high heels or no heel support I just can't walk in without falling head first! I've started to get used to the fact that I'll never be able to wear beautiful strappy heels, but I still need to find shoes that work for me. A lot of shoes recommended for me are, well, "not stylish" to say the least. Hey, I'm a teenage girl, I have to have some standards, right? I've come to the conclusion that my problems with walking in shoes are due to two things (mainly). 1) The slight heels in my current shoes and 2) the fact that I think I've lost some feeling in the bottom of my feet. I can feel the floor below me a lot better without a shoe platform separating my foot from the floor. So here's what I've come up with: Slipper shoes! Basically like slippers/swimming shoes, that cling to the foot and are thin on the bottom, but still offer basic protection. Now I just need to find them :)

Also, if anyone has any ideas for posts, or something you'd like me to write one on, you can email me at or let me know in a comment here.


At 12:31 AM, Anonymous Bonnie said...

Reading your posts remind me of when I was young. I noticed the changes that my CMT caused in my body and I remember feeling that I was so alone. Now that I am older I never know if the changes I feel are CMT related or if I am just getting old! Hang in there, are going to be fine. :)

At 9:50 PM, Anonymous Connie said...

I started to have trouble with shoes at a much older stage of life, I had to get rid of about 50 prs. of great shoes, when I needed to start wearing AFO's at 45. It was one of the saddest days when I realized I would never wear them ever again. When I tried to wear a pair shortly after getting my AFO's, I found that my foot felt like it was so weak that with every step, my foot felt like it was hanging straight down, with ankle bent so that my toes were pointed straight down with every step I took I thought I was going to fall and break my neck. I haven't been able to wear cute shoes for nearly 6 years.
Soooo wear cute shoes for as long as you can.

At 7:46 AM, Blogger Char said...

One of the benefits of doing this blog, is that it helps me remember that I'm not alone - even if it does seem that way quite often.
Thank you!

At 7:48 AM, Blogger Char said...

That would be so horrible! Did you wait as long as you could to get the AFOs?
I definitely know the feeling you describe when you tried to wear a pair later.

Sounds like good advice!

At 5:01 PM, Anonymous Anonymous said...

From what I gather, you plan to hold out on the AFOs until walking is damn near impossible. Fair enough. I think you are at where I was about 3 years ago, on the cusp of my AFO era. The thought of having that ugly off-white plastic harnessed to MY legs only made the reality of my weakening legs harder swallow. I eventually resigned to the idea during a particularly exhausting and lonely day of struggling to get around on campus at the university I was attending at the time.

When I first put them on, took a few steps, and slowly started to get a feel for them, the difference (postive) from what I had on my own was obvious. However, I left this obvious benefit to sit and collect dust in my closet for a number of months; they just felt so big, bulky, and noticable. Early on I could not handle the weight of the stigma that came along with the things.
It took two months worth of weekly group therapy meetings with others ecompassing various hidden disabilities (or hidden aspects of disabilities) as well as more consistent usage of the AFOs to start gaining a comfort for them and living with them. Now I just consider them an extention of my body.

I know exactly what you're feeling, and my advice to you is, go as long as you can without the AFOs, because there is no turning back, unfortunately. And I know it's the same for everyone, but take it from me, AFOs can really make things a lot easier for you and open some doors you may have thought were permenatly closed.

And, more in relation to this blog, skateboarding/casual shoes. I'm not about name-dropping brands, but i recently picked up this sweet pair of Converses, they fit great and look pretty sleak. Vans are really great for the AFO wearer too. And I'm pretty sure this all applies to female footwear. Anyways, great post(s).

-Derrick (that guy from myspace)

At 6:29 PM, Blogger LittleOleLady said...

Char, I had problems all my life finding shoes that fit right.. I have short stubby toes and really wide feet as well as high arches due to my CMT. Fortunately my PT and neurologist say that I can go several more years before I need AFO's, unfortunately my 3 year old son wasn't so lucky. He's on his second set of AFO's and IMO they actually are hindering his walking more than they help.

As a child I hated looking for shoes, back then you couldn't find wide width shoes much at all and I had problems with my feet and toes for years.. I never got to wear those cute high heels all my friends in school did either, and felt a freak because of it (I didn't know what I had in medical terms until I was grown), any time I tried I would always end up with a twisted ankle (done that many, many times.)

Luckily I happened to find some wide width Nikes a few years ago and I buy a new pair every time I can find them.. every doctor I talk to says buy New Balance, but when I take them off the muscles in back of my legs feel like I have been wearing heels all day.

These days I'm just happy to find shoes that don't make me feel like I'm going to fall or twist my ankle to worry about what I can't wear.. best advice I ever got.. take care of your feet at all costs.

At 10:39 AM, Blogger Char said...


You definitely hit how I feel right on the dot. It sure seems like they should be able to make them less bulky/noticeable.
Thank you so much for sharing your story and advice on the AFOs/shoes.
One thing though..
"go as long as you can without the AFOs, because there is no turning back, unfortunately."
What did you mean by no turning back? You won't want to turn back? You actually can't?

At 10:45 AM, Blogger Char said...


I have the same feet, and well as a lot of the same feelings you described. I’m glad that you’ve been able to find some shoes that work for you.
I’m so sorry to hear about your son--I hope you can find a solution/doctor that is good for him. I’d like it if you’d keep me updated.

That does sound like good advice, thank you and take care!

At 4:17 AM, Anonymous Anonymous said...

I am 48 now,but I have always been clumsy, couldn't run, fell down alot, and had hip, knee and ankle weakness as far back as I can remember. Shoes have alway hurt my feet. The summer I was 10 my mother had found some soft soled vinyl, pointed toe "elf shoes" for a costume for a 4H Christmas float. Those were the most comfortable shoes I ever had. I couldn't wear them to school, they were not cool at all. But I wore them at home until the soles wore through. When I was four my family took me to a doctor because I was a "toe-walker" they did agonizing PT for several years in an effort to get my heels on the ground. They stretched out the tendons in my legs, and kept me walking but never diagnosed my CMT.
I had to wear ugly Black and white saddle shoes with steel reinforcement to keep my feet flat. By the end of the schoolday I felt like my legs were made of lead. Other than not being to run, and falling down a lot I have
had a mostly "normal life" I dated, went to college and became a respiratory therapist. I married a great guy and I have two children. When my son was a baby we noticed that at 10-11 months when he should have started to walk he didn't seem to want to. He finally started to walk at 17 months on his toes. By the time he was six his toes had started to curl and
by the time he was seven his ankles were bowing out. The poor little guy had all my problems and then some. We took him to a podiatrist who sent us to a neurologist who did ENCS on both of us told us that we have CMT. He said there was no cure and no treatment. He told us that people with CMT should get genetic counseling and not have children.
He said my son would probably end up in a wheelchair before he got out of highschool. I felt awful. I thought he was
horrible. I had never been diagnosed until that day and I didn't know, I thought I was just clumsy. I took my son to an orthepedic surgeon at Children's Mercy Hospital who began to rebuild his feet. It took six procedures on each foot. Now my son is almost 18 years old and still walking thanks to the corrective surgery And Surgeon Dr. Brad Olney, we can now go to a shoe store and buy him shoes. He
will never be an athlete, but he does well in school, is manager for the football team and involved in the electronics club and speech.
CMT is progressive and both he and I face challenges as the neuropathy
takes it's toll on our legs and feet. I have had to have both hips replaced due to CMT. Do not give up. After spending 24 years in health care the one thing I know is that there is always someone else who is worse off than you. And helping other people bolsters self-esteem and self-worth and helps fend off the depression that comes with physical pain and feeling like you are different from other people. May strong warrior angels guard and protect you and keep you from harm. Becky


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