Taking Big Steps in My CMT Journey

Jill Price avatar

by Jill Price |

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“Those who have known you for years love you for what is between your ears, not what is on your ankles.”

A dear friend said that to me the day I was fitted for my first pair of ankle-foot orthosis (AFO) braces. I was, and still am, feeling very conflicted about my AFOs. Part of me knows I need them, but that does not make it any easier to accept the fact that I need them. Rationally, I know that using AFOs for CMT has many benefits. I am trying to remember that as I attempt to get used to the carbon fiber braces on my feet. But currently, it is a complicated emotional issue for me.

My AFO journey

I went to the CMT Center of Excellence at The John Hopkins Hospital in Baltimore, Maryland, to see my neurologist, and he said, “Maybe it’s time to look into AFO braces.” He has said this to me many times, but this time, I finally said, “OK, I will.” I am finding it harder to keep my ankles from rolling, and walking is getting more tiring. I let him write the prescription, and I took it home with me. I was not really sure what I planned to do with this piece of paper. After a day or two, I decided I needed to go to a clinic to talk to an orthotist.

After doing some research and talking to fellow CMT patients, I went to the appointment armed with a list of questions and concerns. I knew I had to listen to the orthotist, as he knows more than me about this. He was nice, listened to my concerns, and answered all of my questions. I made it clear that I did not want anything too bulky or heavy. After all, I need to be comfortable wearing these things. We decided on carbon fiber custom-made braces. I left the office, feeling very unsure if this was the right decision for me. As of today, I am still undecided.

Now what?

It’s been about six weeks since I received my custom-made AFO braces. When I picked them up, they did not look anything like we talked about and I could not even walk in them. I held back my tears until I got home — I felt so deflated and angry. I waited a day, then emailed him to express my frustrations. Two days later, I was back in the office, and getting the AFOs adjusted and trimmed.

I picked up the “new and improved” AFO braces a few days later.

  • Am I thrilled with them? Not yet.
  • Are they helping me walk better? Not really sure yet.
  • Am I ready for the world to see them? Nope!

The weird thing is that I cannot hide the fact that I walk funny, but the idea of people seeing the AFO braces really bothers me. I know my awkward gait is noticeable, and I’m not hiding my CMT from anyone. Yet, the idea of people seeing the braces when I wear shorts or skirts makes me very uncomfortable. The idea that it will be out in the open irks me. I try to focus on, “Those you have known you for years love you for what is between your ears not what is on your ankles,” but what about those who don’t know me? Will they focus on what is on my ankles? Will they notice the AFO braces before they notice me? I know I need to not worry about what others think and just do what is best for me. I am working on coming to terms with my emotions and wearing my AFOs. I’m just not there yet.

***

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.

Comments

Madeleine avatar

Madeleine

I have been wearing AFOs for 40 years. They changed my life! It had become exhausting to walk because I had to concentrate on every step. The AFOs actually propelled me forward. Keep going back to get them adjusted until they feel just right.

There are definitely ways to camouflage: boots, longer skirts, knee socks with shorts. Keep looking people in the eye and smiling, they won't even look at your feet!

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Jill Price avatar

Jill Price

Thank you fir the advice! I am trying to get used to them.

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Linda Jo Nelson avatar

Linda Jo Nelson

You have come a long way Jill, count each step (in your AFOs) as part of your journey. I know you do not want people to notice braces first, people who matter don't care about braces, or any other device you use to make life easier, less painful, less tiring. I know you are unhappy about wearing AFOs and having them seen, just know that part of life with a condition like yours (or mine) is ignoring what other people think. It doesn't matter but increasing your safety and energy does matter. How will we hike without our AFOs! Love them as tools, not as a symbol of your condition or being different.

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Jill Price avatar

Jill Price

Thanks for your support!! It means a lot to me!!!

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Cathy avatar

Cathy

Why do you not want people to see them? I actually only wear skirts or leggings so mine always show. They are awesome! I get complements on how bad ass they look. They help me walk. I worry that sometimes even though someone is disabled they have ableist thoughts created from messages society gives us about the disabled. Fight that and fight it hard. Be proud and use assistive devices to make your life better. I worry that if you cannot tell if they are helping you that something may not be quite right. Talk to your orthotist. They often are not perfect at first fitting and need adjustments. You might need to work to find shoes that you love to wear with them. I have black braces and black booties so I have a nice sleek look that goes together.

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Jill Price avatar

Jill Price

I think it is self conscious thing for me. I know it is okay if people see them. I just need to get comfortable with the whole idea I am working in it. I am in the process of looking for shoes. It is not easy.

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Madeleine avatar

Madeleine

Jill,

Finding shoes remains a challenge. If you find a pair that works, buy two pairs. I have also taken flats to a shoe repair shop to have a thin color-matched elastic strap added (like a mary jane, but it stretches to accommodate my higher instep).

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Jill Price avatar

Jill Price

Thanks, that is a great idea.

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debbie st peter avatar

debbie st peter

Im 58 years old, was told I need the braces. I have Cmt wondered what will be the best brace for me.

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Jill Price avatar

Jill Price

I wish you the best of luck. I have not found the perfect ones, yet.

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Krupa avatar

Krupa

Hi is it possible to find the name of the braces that have worked well for you?

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Jill Price avatar

Jill Price

I currently wear the Arizona Brace.

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Michael avatar

Michael

From my own experience, it was very hard for me to except a diagnosis of CMT. I was very active in my youth I was also very active in the military. I was diagnosed when I was 49 I was extremely difficult for me to except my diagnosis. I tried wearing over the ankle boots that zip up the side use the cane as long as I could. My life changed 180° when I received my AFO’s. My advice with the AFOs is that your body will become dependent on them even more than you imagine. I continued to deteriorate and now with my AFOs I also use a walker. It’s a learning curve and will only continue to worsen however you learn to overcome can you just move forward. Thanks for the article I hope my two cents works to let others know that we all can make it.

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Jill Price avatar

Jill Price

I appreciate your thoughts. It is hard, we need the AFOs but at the same time they can cause other issues. I try to not use them at home, in hopes to keep some of the muscle tone.

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Sierra avatar

Sierra

Hi Jill!

Hate to say this... but I’m so glad I’m not going through this struggle alone. I am 22 and more active than anyone I know. I got my prescription for my AFOs last week and went to the orthosist yesterday. I left in tears and they haven’t stopped. I don’t want to be at the point of relying on a device to help me walk at 22. Doesn’t seem fair! I have hidden my CMT from almost everyone in my life but with the AFOs that is no longer a choice. Everyone who sees them will know I have a disease whether I want them to or not. I have no clue how to get over these concerns... I have no clue how to manage this disease and not let it get the best of me. Please know you’re not alone. If you ever find a good answer on how to not “let it get to you” please let me know! For now, we will fight together against this horrible disease.

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Sue avatar

Sue

Hi, I am Sue. I am 59 and have lived with cmt all my life but was not diagnosed until 11 years ago. I was embarrassed by it also. I have learned to accept it and not fight it because I cannot change it. I have had several surgeries on my left foot. It now has 6 screws and a rod in it and had to have complete reconstruction. My right foot is turning and has a high arch. My balance sucks. I can only wear sneakers and I work in an office. I have learned to adjust my outfits. However, don’t be ashamed. When people stare or make comments, stand strong and look them straight in the eye and tell the truth. They usually don’t know what to say. I feel more people need to be educated about our disease. Say yes, I have it and this is how I manage it. Look at your positives instead of your negatives. I know it gets hard but u gotta stay positive and help anyone with cmt. When I look at children with this disease I think maybe I can make a difference even if it’s in a little way. Always do research for any progress or new treatments of this disease. The people who truly love u will always be there for you. The other people aren’t important.

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Sally avatar

Sally

Hi Sierra, You're so honest and brave. It is 1 year later...can you share where you are today? I have a family member a couple years younger than yourself that just had to get fitted for them. I'm scared my family member may be going through lots of scary emotions through this struggle. How best can family and friends support you? You are lovely and your heartfelt message meant a lot. Thank you, Sally

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Bruce avatar

Bruce

I am an orthotist of 35 years and explain to people if you are not ready for AFO's then do not get them as no one wants to provide something that ends up in the closet, The concern with CMT is achilles tightness and foot tightness only increases and can make bracing more difficult as time goes on. It is optimal to keep the same orthotist who provides your unique design so he can follow your progress. Clients with CMT can be challenging to align optimally and often weightless and invisible is not the best goals to start with. Hope that helps

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