Recently, there were tennis balls coming at me from three directions at three different timings. My job was allegedly simple – catch them. This is my newest therapy, integrating my senses between my vision and my body. Sometimes for funsies, I am on a balance board while having the tennis balls lobbed at me. At home, I have a cat-heaven-set-up of a tennis ball on a string, where I need to track the tennis ball with my eyes in every direction it goes. There are the beads on the string, teaching my eyes convergence and divergence.
At my first vision therapy appointment, I managed to get hit in the face repeatedly with ping pong balls, much to the horror my therapist. He is this dynamic Swiss man that embodies the growth mindset. He is curious, humbled by all he realizes he doesn’t know, and a bit of a mad scientist with all the ball sport training. He has never treated a dystonia patient before, so we enter the unknown together, figuring it out by trial and error. While being so unassuming, he is peppered with crazy credentials of training elite Swiss athletes and pushing our collective knowledge of how our vision, brain and body work together. I do secretly wonder how many elite athletes experienced the ping pong ball to the face early on.
The literature has described vision and balance problems in cervical dystonia. I noticed early in my diagnosis that at times of fatigue from long attempts at neck stabilization, my eyes would appear wonky in photos. Despite this knowledge, vision therapy isn’t part of my neurological care. It was only through digging and asking far more questions that any doctor appreciated, that I found my vision therapist. Further, the fees are not covered by insurance because it’s ‘unproven’.
It’s a bit of a frustration as a rare disease patient, because there is so little research into our diseases, everything is unproven. We are left with the choice to try or not at our own expense. I wish there was an option for payers to be evidence based; try the therapy and if it works with objective measurements, then it should be covered as needed by the patient. I acknowledge that is a bit of a dream.
Since I am all about outcomes, here is what has changed. My headaches are less frequent and less severe. My eyesight is improving (gasp – never thought this could happen in my 40s). I finished the ski season mastering the black piste and off-piste (adjacent to the groomed trail) skiing on moguls, for hours without a break. I am back bouldering in the gym with full awareness of where my body is in space. In short, the results are dynamic and compelling for my N-of-1 clinical trial. We need a holistic system where rare disease patients have access to these types of life-changing treatments. It is time.