Traci's interview
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How did all start?
We knew something was not right... I could not run and jump like the other kids. I tripped over myself, etc., and had poor coordination. One day at a camp, I tripped in a field and dislocated my knee. The doctors found I had no reflexes, which was unheard of at the time, and that is when the journey began.
Do you already have a diagnosis? How long did it take you to get it?
Originally they thought I had Guillain-Barre Syndrome. A spinal tap (lumbar puncture) was used to diagnose me with CMT 1A. I was the first in my family, and my dad, grandfather (dad's dad) and brother were diagnosed shortly after. My niece (my brother's daughter) also has it. Once they did the spinal tap, the diagnosis came pretty quickly. I have been rediagnosed four times since then, since I am doing better than expected for the level of disease I have, but every time the same diagnosis is made.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology... I have a great neurologist who has never stopped me from doing what I need to do for my own care. My GP has been very supportive. I have a personal trainer/osteopath who has helped me greatly. And several massage therapists.
What has been the most useful thing for you so far?
Yoga and exercise by far. Having a good attitude. Knowing that I am worth the trouble (all the years of pain and exercise to get where I am now). Supportive parents who let me do what I wanted even when the doctors told me I would be permanently in a wheelchair by 20.
What have been your biggest difficulties?
ice in winter!
How has your social and family environment reacted? Have your social or family relationships changed?
No, because I have had CMT since I was a kid. I have good friends and family who have been largely supportive.
What things have you stopped doing?
I have always had issues with CMT, so I have technically not "stopped" doing anything, but, over the past 20 years, I have become a yoga teacher for people with physical limitations, I have learnt some Latin dancing, and I have travelled.
What do you think about the future?
Future looks bright, I've got to wear shades, lol.
So far, which years have been the best years in your life? What have you done during them?
Between 2007 and 2017... I started teaching chronic disease and chronic pain self-management at the McGill University Hospital Centre. I was also a Master trainer training trainers. Gave me purpose for having my disease. People now want me to write a book about my situation and how I overcame things and had a relatively normal life even with severe CMT 1A.
What would you like to do if you didn’t have your condition?
Nothing... my condition has brought me more in life in many ways than if I had been able-bodied.
If you had to describe your life in a sentence, what would it be?
I have persevered, inspired and thrived in life.
Finally, what advice would you give to a person in a similar situation?
Never give up… realize you do have to work through the pain to improve (sorry, but that is the way it goes), but if you can manage to do that, the body is amazing at what it will start to allow you to do again. And that although it is hard to have a chronic disease and chronic pain, it can bring you so many gifts... learning what is truly important in life, learning to hone your intuition and know what is truly right for you even if others think otherwise, and believe it or not, it can bring a lot of confidence.
