The diagnosis her family already had
Julie's diagnosis was not a direct path. She started having foot drop at six years old, but was not diagnosed with CMT until she was 28. Her parents spent a lot of time taking her to doctors when the symptoms first appeared, and when it led nowhere, they stopped.
The strange part is that the answer had been in her family the whole time. Her mother was diagnosed with CMT as a teenager in the Philippines. When she moved to the States and Julie started having symptoms, a doctor told the family it was not CMT, so they disregarded the diagnosis and never spoke of it again. Julie had never heard of CMT until she was diagnosed herself.
It was not until her late twenties that she started the search again. She was tripping and injuring herself too much, and decided it was time to figure out what was going on. The answer was CMT Type 2A.
A morning routine she cannot live without
Mornings are the hardest part of Julie's day. Her body usually wakes up in pain, so she starts the morning in a wheelchair while she gets herself, and her dogs, ready for the day. Once everyone is fed she takes time to stretch her guarded muscles and activate the ones that are slower to wake up and fire.
I can't live without this morning routine!
Julie Stone
From there she transfers into her AFOs and starts her day. She is a personal trainer, and spends most of the day in sessions with clients who also live with CMT, work she finds deeply rewarding. She protects time for herself too: an extra long lunch for her own workout, a walk with the dogs, and a proper meal. When the day is done, she winds down with her husband, the dogs, and a good book.
The tools that make it work
Her Allard BlueRocker braces are, in her words, a lifesaver. She could not do what she does without them. Billy Footwear shoes make the braces easy to get on while staying comfortable and roomy. She uses a wheelchair for long walks and for events with a lot of standing, and she loves museums, which is where the wheelchair earns its keep.
For everything the pavement cannot reach, she attaches a Rio Firefly to the wheelchair and goes off-road. It gets her out on hikes she otherwise could not do. Her dogs love it.
Why she became a Dream Team ambassador
Julie spent a lot of her life feeling like no one understood what she was going through, and it was lonely. She became an ambassador so others would feel seen and know they are not alone, and so people reading her story might find a little more compassion for themselves.
I want to break down society's construct of mobility aids in hopes people will realize that using a mobility aid is not "giving up" but instead it is a freedom and can give independence.
Julie Stone
What she wants the newly diagnosed to hear
It's not an end all diagnosis! You can live a very fulfilling life with CMT. Don't be afraid of adaptive tools and mobility aids. They can help enhance your life and provide independence.
Julie Stone
The dream she thought she had lost
Before her diagnosis Julie was lost and angry about living with an unknown disability. She had always been an active person who struggled to keep up with the other active people in her life. When people asked what she wanted to be when she grew up, her answer was never doctor, lawyer or vet. She always wanted to do something athletic, and as her symptoms progressed she felt those dreams slipping away.
The diagnosis, strangely, is what gave them back. She started learning about CMT and body mechanics, adapting exercises to work for her CMT body, and sharing the discoveries online. To her surprise, people gravitated toward it. So she took a leap, became a NASM Certified Personal Trainer, and now runs an online fitness training business that caters to people living with CMT.
It's been a dream getting to work with other CMTers at All Bodies Community!
Julie Stone
The thing nobody asks her about
CMT is dynamic and as it progresses, you may wake up with a new body each day. It can be really hard to plan for, so learn to give yourself compassion and grace.
Julie Stone
Julie is a NASM certified personal trainer and coaches people with CMT and other disabilities at All Bodies Community.
