Our experiences

In this blog we seek to share our experiences with brain injury treatments in Ontario, Canada. The next few days we will be exploring some of the traditional treatments we have taken advantage of. We will do our best to share cost, treatment options and some websites to find a credible practitioner in Ontario. If you are in another province or country it is ESSENTIAL you explore the regulations and regulatory bodies in your area to find someone that can help you. If you have extended health benefits that you are trying to use it never hurts to call your insurance company to ask if they have practitioners they recommend or certain degrees or programs they will compensate you for ( example: our benefits cover treatments from psychologists but not counselors/social workers/therapists etc).

Brain FX: The wife’s perspective

Jason spoke the other day about his assessment from BrainFX and we hope to feature some information from the creators in the near future (she’s pretty busy since she also works as an OT!).

Obviously I did not have the chance to work with the software or the assessment. I did have a chance to chat with  Tracy Milner, one of the creators (also Jason’s private OT) and sat in on one of their webinars for health professionals. Approximately a third of my massage therapy clientele are suffering from traumatic brain injuries and post concussion syndrome so having a deeper understanding of resources out there is always a good thing. This was another case, similar to our eperiences with behavioural optometry, where we are so very lucky to have the connections we have and that Tracy Milner is a friend of our doctor.

So here is my review:

Treatment type: Actually an assessment, BrainFX

How to find: www.brainfx.com

Price: $300-500.00 (estimated)

Credentials: Use the Find An Administrator tab on their website

What is it? From their website “BrainFx 360 was created to measure cognitive (thinking skills), mood, social, behavioural, fine motor and balance effects through self-report, collateral report, and standardized performance testing, through real-life skills and game-like activities for people who are age 10 and up. “

Notes from our assessment:

This was really our first chance to have Jason assessed by someone that knew what they were doing (see our posts on doctors for more on that story). Tracy sat with Jason while he completed about 3 hours of testing on the tablet, I heard bits of her instructions as I worked and was impressed by how succinctly she explained the tasks and encouraged Jason throughout.

Post assessment Jason was exhausted to the point of experiencing a panic attack while trying to cook dinner. There were a lot of tears about how tiring the assessment was and how really truly unfortunate it was that this was our life 6 months into marriage. We didn’t know enough about what we were dealing with to make some good decisions about energy conservation that night. To anyone getting this assessment I would recommend not working before the assessment and planning to rest for the rest of the day or at least not having anything that HAS to be done.

BrainFX 360 includes the option for 3 people to answer questions and submit their views on the subject’s symptoms and behaviours post TBI. I was able to complete the survey for Jason (along with 2 others that saw him frequently during the first 6 months) and was excited to finally be able to give my opinions and have my chance to talk about what we were living with. All the input from those surveys is included in the final report.

A week later we were able to sit down again with Tracy and review the results of the assessment. She brought a beautiful document that compared Jason’s results to averages and clearly highlighted areas of difficulty and areas of success. This was the first time we had concrete data showing the difficulties Jason was living with and having them laid out for us allowed us to start planning how to make life work.

A month later Jason was invited to Toronto Rehab for an assessment. We were very happy to have the BrainFX 360 to show and the physiatrist we met with was amazed by how easy the report was to read. He spoke of other patients he met that spent thousands on assessments only to be given reports that were unclear and unreadable by other professionals. Brain FX 360 uses language and terms that are standard in TBI medical care and is easily understood by everyone we’ve worked with. In each case (including Tracy) health professionals have been able to read the reports and estimate where the bleeds were based on Jason’s symptoms.

The first two weeks of Toronto Rehab were assessments  – in total I think Jason spent about 13 hours doing assessments with various professionals. Often at the end of the day he would explain the assessments starting with “It’s like what I did on Tracy’s but like this….”. At the end of the two weeks we had the opportunity to review the results and build a treatment plan with the team and pretty much without fail the results of these long tests mimicked the results of BrainFX 360.

I am not trying to be so arrogant as to claim to have understood all the tests or to know if EVERY test could be supplemented by BrainFX 360. I am sure there are reasons people use the tests they do and I am grateful that we have SO much documentation about Jason’s abilities and challenges. But for those of you that don’t have the ability to attend a rehab program or have felt lost without some solid assessments – BrainFX may be the company you need to contact. I’m attaching a brochure from their website and I strongly encourage exploring their website and contacting their administrators to find out if they can help you.

BrainFxbrochure

BrainFX 360 – My Experience

The BrainFX 360 assessment wore me out.  Don’t get me wrong, I really enjoyed completing the assessment and found it really interesting to complete but it was an exhaustive test.  The test may not be this exhaustive for most but at the time I was working full time (which I shouldn’t have been) and trying to recover from a TBI.  The whole concept of this program is well ahead of traditional testing completed by Occupational Therapists.  In a couple of hours I was given results that validated the symptoms I was feeling and provided specific areas of recovery for Tracy (my OT) to focus on.  This was HUGE!  At this point I was struggling at work and constantly exhausted; the results from the BrainFX 360 assessment provided a glimpse at the symptoms that were causing these issues.

The entire assessment is completed on a tablet and you are occasionally provided with a keyboard and/or some headphones.  There are puzzles questions, and some small game-like section, each meant to test a specific area of you cognitive function or abilities.  Part of the fun for me was attempting to guess what was being assessed as I completed each of the tasks.  After the assessment is complete Tracy went over some of the results with me immediately but a comprehensive report followed on my next appointment which hit the nail on the head when compared to how I was feeling.

Looking back on the testing after seeing another OT through a rehabilitation program I can definitely see the advantages to BrainFX360.  Although I was exhausted the day I completed this testing, the standard paper/pen testing takes more time and energy and the results are less comprehensive.  This testing saved Tracy and I several hours over several days of testing which can be a toll on both energy levels and my wallet.

I am lucky to have had this testing and if you are lost figuring out your symptoms I’d recommend checking out BrainFX 360.

Behavioural Optometry

 

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

Price: varies

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.

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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)