A Race For The Brace by guest blogger Amy

I have Charcot-Marie-Tooth (CMT). It is a hereditary motor and sensory neuropathy condition – a form of neuropathy that can begin between childhood and young adulthood; characterized by weakness and atrophy (wasting or loss) of the muscles of the hands and lower legs; progression is slow and individuals affected can have a normal life span.

As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. I swear I ran the mile 20+ times and could never do it. I would trip on “air” and in band was told I wasn’t “rolling” my feet correct, but never thought that I was different.

I am sure at this point you are thinking to yourself, if this is hereditary surly my parents should have known what was going on. Well, I am adopted, so I have no medical information on my birth parents and since the adoption was closed there is no finding out about it. My parents told me as a young child I wore special shoes to help me learn to walk and all but no doctor they took me to know what was going on. CMT is not common and only Specialist know about it. I have walked into doctor’s office and had to explain to them what I have and what it does to me.

Amy with family

Let’s fast forward a few years. I remember my husband asking why I walked the way I did, but I didn’t really listen to him and he never made a big deal about it, he just thought I was a “band junkie”-funny thinking back about that now. So as I got older I started falling more for no reason. It was getting harder to lift my feet and I was tripping on even more air. After I had our daughter (who is now 9) he pushed for me to be seen by a doctor to try and help me- I wasn’t fond of this since I thought I was fine and he was making a big deal out of nothing, but I went. So, this is when all the poking and prodding began. I went to my Primary Care Physician who sent me for an MRI and after the review referred me to a Neurologist who then sent me for a Nerve Conduction Test. Let me tell you that is the most pain I have ever been in. They take little needles and poke them in your skin then send electrical volts to see if your nerves react and how fast. It’s done all over your body – I had bruises everywhere. After this was done I then had be referred to a Specialist at the Medical College of Georgia to finally be diagnosed.

I was then almost in shell shock; I had to start physical therapy and had to be fitted with a pair of custom AFO’s. – Ankle-Foot Orthosis, it is a type of short-leg Brace to help support a weak ankle and keep it from rolling side to side but allows the ankle to go forward and back. It can be made either from a very hard type of thermo-plastic or it can be made from steel and leather. – Mine are plastic.

While they have helped with my foot drop, I have started losing my balance due to the fact that they don’t support and help keep any muscles that I still have, they just keep wasting away. I recently found a brace called Helios®. They are made just for people with CMT. I had to submit a Video and see if I would even benefit from them. Waiting on the response back seemed like it was taking forever. When I got the email telling me I was a candidate to be fitted for these I was so happy. They will help with my balance and stability and speed of walking. Some people have even been able to jog again!!!

helois-11

helios

I am 29 and still have a lot of life left to live. I have 2 wonderful kids who need me and I want to be able to do as much as possible with them. Insurance will not pay for these since they are “not needed” in their eyes. They are made out of Carbon Fiber and Kevlar. They cost $13,000 for the pair. I know these would change the quality of my life and help me stay mobile for many years to come.

I would appreciate any donation!!!! Every penny counts.

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This entry was posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, fundraiser, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories and tagged , , , , , , , , , , . Bookmark the permalink.

6 Responses to A Race For The Brace by guest blogger Amy

  1. I hope you get your braces soon! I have similar issues with a medication that helps a lot with my CMT fatigue. Insurance says its not really necessary. So frustrating! CMT is very misunderstood. I am sending good thought for generous benefactors! 🙂

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    • cmtny says:

      Lenka, it’s crazy how insurance companies think they know more about what is needed than doctors and patients. My insurance wouldn’t pay for my leg braces because they decided there was no proof that I needed them, no proof that they would improve my condition! Can you FB me with name of medicine for fatigue. I’m a pharmacist so many drugs come to mind, but I’d like to know which one works for you.

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  2. Pingback: Thank You!! | A Race for the Brace

  3. Amy says:

    Thanks you for featuring me 🙂

    Like

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