Tuesday, April 5, 2011

To Brace or Not to Brace

So one of the reasons for starting this blog -- I am seriously considering myself orthotics, otherwise known as AFOs, ankle-foot-orthotics, braces, or clunky aparatuses that make you walk better. Many people with CMT have them because our feet turn, there is a foot drop and a high arch along with hammered toes. This makes for walking and climbing and other stuff hard. So many opt for orthotics that help keep the feet steady and fill in the space where the arch and turned foot is. My brother always had AFOs for as long as I remember. In general, it was him that really had the disease while the rest of us just sort of had it (all 3 siblings got the disease, yay!). Interesstingly, my father who passed it to us was always strong like an ox and I never remember him having any issues. Its like he barely had the disease at all. BTW, my father passed away almost 8 years ago (wow) from cancer. Still miss him :(. But I digress. So AFOs are something that many CMTers use and for the most part it helps them get through the day better.

Why now ?

This is a good question. I feel like i'm 30 years old, have everything I really need in life right now and can maybe finally get past looking strange or whatever. I think i have the confidence and support group, but more on that later. I also do feel like my feet have gotten a little worse in the past few years (its a progressive disease and no one knows how much or quickly it will progress. the hope is it will be slow and barely noticeable). My feet have turned and its difficult for me to walk far, stand in one place, climb stairs, etc. I'm hoping that orthotics might help with this. Finally, now that I have two little ones, I am constantly busy and on my feet, more than I've ever been in my life. Did I mention my house has 4 floors (well this includes the attic and basement, but still!) So I want to make sure my feet are as protected and preserved as possible so I can use them as long as possible (hopefully my whole life). I decided around a year ago this time to finally get my act together and get to a doctor. I hadn't been to one in years and years. I went to the MDA clinic and went this past October too. Of course they recommended orthotics. I dont know if i'm going to go back in the spring as theres really not much anyone can do.

Orthotics are not cheap and there is a big range of them. The ones I'd probably be getting are about $500-1000 a pair. There are really cool and awesome ones that are crazy expensive and not even everyone likes them. But the interesting thing is my old insurnace didn't cover them at all. Since I am on the fence about them, i pushed it off. This past March we switched to an insurance that covers half. And a PT friend of mine said he knows a guy who might be able to help me financially because he's a freind and gives him a lot of business. So i decided to at least talk to him and see what he said.

Why Not?

OK, so i have someone who can work with me financially and listed the reasons why i'm interested....so whats the problem? Sigh. I just dont know. Look, I'd be lying if I said there wasn't the mental factor. Its a big deal to slap braces on and basically singles you out as disabled. I so don't want to be disbaled. But I know its all in the head. When I admitted this to an OT and the MDA she patronizingly smiled and said 'Not disabled, DIFFERNTLY abled.' How sweet nice lady who has no clue what i'm going through. You officially changed how I feel about the whole orthotics thing. Theres somethign so comforting about being normal and regular and not sticking out. Braces would change that. I dread meeting new people or neighbors or potentail bosses and having them look at those things on my feet first. i guess I can wear long skirts and leggings when its cold out. But no more short skirts ever? And its not something that really can be hidden or shoould be hidden if I decide to wear them. Right now I seem like any regualr person and even some of my friends have no clue that I have issues, they just think I have an interesting walk. But honestly, if I knew that wearing orthotics would only be a positive and good move, I'd get over myself and do it. I'm all about being open and doing whats right and trying hard not to care about what others think. But I'm worried that they may do harm as well as good. That i'd come to rely on it, need it all day (one friend only takes them off to shower or sleep). Not everyone does but she says they really help her so why wouldn't she wear them all the time. Maybe its a good thing? And they seem so cumbersome and heavy. And what if my muscles deteriorate more because I have this aid? I like walking briskly and lightly and could I do that with orthotics? Plus my job relies on me getting up and sitting down and sitting on the floor which would probably be more difficult if I were wearing big clunky things on my feet. I dont know. I just dont know. i guess it cant hurt to get it and try it out. But part of me is like 'waht do you need this for, just continue life as is'. Its not like i'm falling all over the place or cant move. I'm getting by. Its just hard and sometimes draining. I would love for things to be physically easier. Woudl orthotics even help with that?



  1. I've been on the AFO fence for a while now too. So far my Dad is the only one of us who has AFOs. I have been avoiding them for many of the same reasons you listed. Right now I am still able to get around decently, I do tire and trip but that is manageable. When it gets to not be, then I might consider the AFOs more seriously. For now I want to preserve muscle mass and function for as long as possible. It is a hard decision but one that ultimately you need to be comfortable with.

  2. thanks i, its so true. Thats one of the hard things about CMT, everyone has it so differnetly and what works for one doesnt work for another. Can you tell me at what point would you consider something 'not manageable'?

    And how old are you?


  3. I put off getting AFOs until I didn't really have a choice. I was falling often and walking was just sooo much effort. I started with one on my worse foot and added the second one about 5 years later. (I think I am probably more severely affected than you...I have had symptoms all my life.) It does make walking less exhausting and helps with my balance, but of course there are cons. I miss wearing cute shoes, and my AFOs are hot in the summer. To add to the overall stylish look, I wear two different kinds of AFOs. :) One is a traditional white plastic, and the other is a Blue Rocker. I prefer the Blue Rocker but it wouldn't work on my right foot. Without them, though, I'd be a lot less active than I am.

  4. Hi CM - I am 42. I don't know what I would consider unmanageable. I'm sorry that I don't have a more concrete answer.

  5. I got my first pair of AFOS in October at the age of 32. My doc had been suggesting it for a few years but I was reluctant. I decided to go for it when A) I noticed a decrease in my stamina and B) to be a good example for my son who had just got his first AFOs and reinforce to him that he is not alone in this CMT thing. I wear them at work and on big day excursions and I have noticed I have more energy in my legs. But as with all things CMT, everyone is different.
    Good luck with your decision.

  6. Hi CM2, I found your blog via Nic (I think) and liking it. I recently started the blogging thing too as a way of dealing with CMT. Like you, I am a Mum of two and in my 30s. I live in Australia. I have been wearing leg braces for a long time-over 20 years now. I have come to rely on them and rarely go out of the house without them. They give me a lot of confidence due to the stability they provide as well as the endurance they assist with. If you go with them it is probably a good idea to do exercise with out them, such as swimming and cycling, just to maintain calf muscles. I can understand the difficulty as it then becomes such an obvious thing. With maturity I have come to worry less about that and realize the benefits they bring me. Good luck with your decision.