Living With CMT - Julie's Story

Meet Julie, a guest writer for this blog series.

I didn’t have a name for what was happening to me, but I knew it was starting to become a real problem. I decided it was time to start searching for answers. After many doctors visits I finally had a genetic test that gave me my diagnosis.

Hello CMT Family, my name is Julie Stone, a recent Northern Arizona resident (previously living in Seattle, Washington and Ann Arbor, Michigan). I have CMT type 2A and I’m a certified personal trainer that specializes in CMT safe and friendly exercises. I’m excited to share part of my CMT journey with you and feel honored to have this space to share my story. 

I’ve spent the majority of my life tripping over non- existent cracks in the ground, yet for a long time, I pretended there was nothing wrong. My foot drop made its first appearance when I was six, but I wasn’t officially diagnosed with CMT (type 2A) until I was 28 years old. Despite this, my footdrop didn’t deter me from pursuing the sports that I loved. Throughout my youth and teen years, I was a competitive gymnast and 3m diver. I’m still unsure why I always picked sports that involved a lot of leg power and coordination. I couldn’t run fast or jump very high, but I loved the adrenaline these activities gave me. 

As I graduated high school, the tripping, and what I considered “clumsiness” didn’t stop, and as I went into adulthood, it became worse and worse. While in college I was close friends with some of the cheer team and would do stunts with them for fun in between classes. I joined an acroyoga group and was a flyer. I’m still shocked to this day that I didn’t break or sprain my ankle during these activities. When a couple individuals in this group invited me to join their tight rope practice, I remember getting really distant and making up reasons why I couldn’t go.

At this point, I still didn’t have a diagnosis and was really frustrated with my body and didn’t know how to respond when people asked about it. I became really defensive and aggressive whenever the topic came up. I didn’t know what to do and I felt trapped in my skin and unable to describe what was happening to me so others might understand. I didn’t have the community and role models that I have now, that have helped me understand and work through these emotions that felt very “different” and “other” from everyone else. 

It wasn’t until I turned 27 that I was forced to face that something was happening. I had tripped and broke my feet and toes a couple times within a  short period of time. I didn’t have a name for what was happening to me, but I knew it was starting to become a real problem. I decided it was time to start searching for answers. After many doctors visits I finally had a genetic test that gave me my diagnosis.

I didn’t realize how impactful it was to have a name for THIS thing that was happening to me. My clumsiness and lack of leg strength suddenly made sense and everything fell into place. Getting my diagnosis changed my life and connected me with the CMT community, where I finally felt seen. Through this community, I've met some of my closest friends. Growing up I always wanted to do something in fitness and didn’t think it was possible due to my progression, but having a diagnosis and the support of the CMT community, I decided to hone in on my passion for fitness and become a Certified Personal Trainer. I’ve since started: All Bodies Community, a fitness community with those who have CMT and similar diagnoses. We’ve grown to a team of certified personal trainers who all have CMT. Our goal is to empower CMTers to feel confident in their bodies through adapting exercises specifically for their bodies. Fitness is part of my identity and will always be a part of my life. It might just look different than the norm- but that’s ok! Currently, I adaptive mono-ski, wheelchair dance, and use my Allard AFOs to take my dogs on outdoor adventures.

I’ve learned to accept my CMT, but I’m not letting my CMT progression stop me from doing the things I love. Instead I’ve learned to adapt and embrace mobility aids. I want every CMTer to learn to love their body and embrace mobility aids so they can enjoy life to its fullest. 

I wish I could go back and tell my younger self not to worry and that this journey is going to be incredible and something I wouldn't change.

Julie Stone has lived majority of her life tripping over non-existent cracks in the ground and having no idea why! It wasn't until a CMT diagnosis, in her late 20s, that things started to fall into place. The clumsiness and lack of leg strength suddenly made sense. Getting a diagnosis of type 2A changed her life and connected her with the CMT community, where she’s met some of her closest friends and honed her passion for fitness.

Following her CMT diagnosis, Julie has became a Certified Personal Trainer, specializing in working with individuals with CMT. Her goal is to empower all CMTers to exercise safely and effectively, fostering greater strength and confidence in their daily lives. Outside of fitness, Julie wants every CMTer to learn to love their body and embrace mobility aids so they can enjoy life to its fullest.

How to connect with Julie:

Website: www.AllBodiesCommunity.com

YouTube: https://youtube.com/@cmtdefy

Instagram: www.Instagram.com/CMTdefy

Facebook: www.Facebook.com/juliestone07