I was about 30 years old and teaching a martial arts class in England when I experienced a dry, irritating cough. That cough is still with me, 40 years later. I realize now that this might have been my first symptom of CANVAS syndrome.
At age 67 I found myself bumping into my wife on our walks. My balance issue was becoming quite a concern since I trained with real blades in the martial arts group I founded, British International Fighters Federation. I went to my GP who checked my balance, my ears and my eyes, but nothing really came of those appointments. Meanwhile my balance was getting worse, my toes were feeling numb and I was very constipated.
Eventually, I was referred to a specialist at The Royal London Hospital in Whitechapel. This doctor put me through a lot of tests including a DNA test to see if there was a hereditary problem. Eventually this was proven negative.
In 2019, I saw myself on a video taken at a martial arts demonstration that I had just given. I was distressed to see myself looking very awkward, as though I were walking on stilts.
Eventually, after four years of medical appointments and tests, I was finally diagnosed with CANVAS syndrome. I feel pretty good when I am sitting but standing and lying down are both problematic. I suffer a lot of back pain from my awkward wide-legged stance that helps me from falling over. I’m very disoriented when walking because moving my head makes my vision jumpy. I can’t navigate in the dark at all; I will just fall over. My lower legs and feet have lost much of their feeling, except for extreme feelings of hot and cold at night. My hands are always cold. I have no sexual feelings. And I only sleep 2-3 hours a night.
There is no cure for CANVAS syndrome and pain killers have not helped me. My balance is poor, and my nervous system remains very agitated. I do try to stay as active as possible. I can still drive because I can feel pressure through the bottom of my feet. But, after many years as a martial arts trainer, I am now feeling vulnerable and far from the peak of my abilities.
I would like to thank the Canadian Balance and Dizziness Disorders Society for letting me share my story. I would not have understood this illness without their article about CANVAS Syndrome.