Originally, we started this blog as a way to share our experiences dealing with brain injury in Canada – the good, bad and ugly. We also wanted to share my letter to the men (still unidentified) that attacked Jason and changed our lives forever. Through this outlet, with friends and family reading and sharing our story, Jason’s cousin Geoff Heddle read our blog and contacted us to help. Geoff is a behavioural optometrist in Indiana and invited us down for an assessment. He was the one that recommended we read “The Ghost in My Brain” by Clark Elliott since that’s a similar treatment option to what Geoff deals with. Full disclosure – I’m writing about a family member and may be biased. Before now I wouldn’t have been able to pick Geoff out of a crowd and now he’s the person mostly likely to get naming rights to our first born!
Through this amazing connection we have been exposed to some additional treatment options available in the USA. Below is our detailed account of our trip to Michigan to meet with Geoff, Geoff’s mentor, Stefan Collier and Stefan’s wife, Yvonne Frei. Stefan teaches syntonic optometry courses worldwide and is highly sought after – so we are pretty much beyond lucky to have met him!
So here is a summary of our assessment:
Treatment type: Behavioural Optometry
How to find: http://www.covd.org
Credentials: Look for an optometrist that discusses or has taken courses in vision therapy, behavioural optometry, syntonic optometry, neuro optometric rehabilitation
What is it? From the Australian College of Behavioural Optometrists (the most concise definition I could find!) “Behavioural Optometry is a whole-body approach to vision care. The way that you interpret what you see does not depend solely on how clear your eyesight is.”
Notes from our assessment:
To begin, Stefan started chatting with Jason, simply asking about his symptoms, how he feels and how he got the injury. Note – I travel with a 3 inch binder full of Jason’s medical records but that really was of no interest to Stefan and to be honest this made me a little nervous. We’ve run the gamut of professionals and everyone up to this point seemed more concerned with the MRI and CT scan readings than anything else where both Geoff and Stefan seemed to care much more about the symptoms that Jason was presenting, using the imaging and reports as confirmation of their suspicions, if they used them at all. Looking back, I can see how outstanding this mindset really is. If there is anything we learned from this year, it’s that not everyone with a bleed or concussion presents the same way, making the imaging data fairly useless on its’ own.
After some questioning, Jason sat in Geoff’s optometry chair to begin the eye assessment. There was lots of discussion back and forth in German and English, with my notes full of references to Frankfurter sausage and different reflexes.
About an hour into Jason’s assessment, Geoff and Stefan concluded that the problem, or at least the most prevalent issue Jason had at the time, was that his eyes and body were interpreting where he was in space differently. This caused a fight or flight reaction constantly. His body was trying to adapt to what he was “seeing” causing his gait to change and a variety of back issues to develop. Keep in mind that the explanations by Geoff and Stefan were far more eloquent than that and it instantly made sense of all Jason’s symptoms. Listening to all of their explanations, we geared ourselves up for spending thousands on prism glasses, the solution presented in “The Ghost in My Brain”.
Luckily for us in Jason’s case the preferred treatment turned out to be binasal occlusion or in layman’s terms, some scotch tape on part of his glasses. After coming up with the correct placement for the tape, Geoff and Stefan reassessed Jason. There was no denying it. We could see a very clear change in Jason’s gait immediately. The rest of our time with these men was spent learning homecare stretches and exercises to do until Jason could be assessed again.
This photocopy of Jason’s glasses shows us where to put the tape if it ever falls off. As you can see it’s only covering a very small portion of the lens.
I am not going to lie, when we left the assessment and got in the car I cried. It seemed SO absurd that some scotch tape could fix what had arguably been the worst year of our lives. I just cried. Jason was sitting beside me RAVING about how much clearer the road was and how much more he could see peripherally and I cried. I mean really. Scotch tape. If you rearranged your work schedule and drove for hours, to be told Dollarama had the key to your problems all along, you might cry too (SIDENOTE: I might have been very tired and hungry when this logic made sense to me. The reality is that it takes years of courses and study to know how to assess eyes and apply behavioural optometry correctly.)
But here’s the reality. This little bitty piece of tape has changed so much for Jason. His gait is different – more even, larger and more proportioned to his size. He looks ahead when he walks instead of at his feet. Within 3 days of wearing the new glasses he was laughing at jokes on TV (despite being tired from the trip), something that has happened very rarely since his accident. He can pick numbers out of a list. He sees more clearly and finds words more easily when talking. Despite my early negativity we both believe we’ve noticed him processing more quickly and he seems more able to remember a short list of items in the grocery store, which is huge for us!
I know without a doubt this wasn’t some easy fix. Geoff and Stefan, both geniuses in their own right, spent hours with my husband to find just the right solution to help us through this stage of recovery. In these last few weeks there have been days where I felt like I know my husband again, like there may be hope for him returning to the full life he wants and we’ve dreamed of. We are so lucky to know such an intelligent man and to have him give his time to us so generously. There will be stages to Jason’s recovery. We may have to change the tape or look into proper glasses down the road but the time I’ve gotten to spend with my husband this month has been well worth the trip and any subsequent visits we may need to make. We have both been astounded by the gains he has made in 3 weeks since our initial assessment and we are very much looking forward to an update with Geoff soon.
I know some of the gains we mentioned have nothing to do with what you see/your vision (like finding words in conversation) so I would recommend reading “The Ghost in My Brain” understand more fully (because I’m still working it out myself). I would also encourage you to check out the references listed on both Geoff and Stefan’s websites.
http://www.oepf.org/sites/default/files/chapter1.pdf (lots of science information, some description of visual therapy on the last page)
http://www.oepf.org/sites/default/files/Chapter%202%20Space.pdf (quite long, but full of valuable information if you want to understand behavioural optometry)