Category Archives: Parents

The Contact Sports Tax on Vision

Railing the last turn in first, I felt heat close to me both high and low and was determined to beat these guys across the line and not get tangled up or snaked by one or both. I got on the gas hard.

I would never again be physically, mentally, and athletically stronger than I was in this moment.

Jay Fraga, Mass State Championships

I don’t remember anything about the race prior to that or even who I was racing against. I do know that it was a state championship race here in Massachusetts and it was 2-3 years before the big crash that ultimately finished me off in BMX. There was one obstacle left: a step-up jump and maybe a 50-yard dash beyond that to the finish line. I gave it every ounce of energy that I had- and some that I didn’t. I never gave a shit about form when it came to my own racing: I didn’t care what happened as long as I crossed that finish line before everyone else. Most of my wins probably looked like I had parts and bolts flying off my bike and body when they happened after I turned thirty.

Running for the line when every cell in your body is screaming is something else. For me, it always meant that the world turned gray in my peripheral vision as I concentrated on the task at hand. It was like looking through binoculars and I knew that feeling ever since accidentally figuring out how to focus on the starting gate as a young boy. When you do it right, everyone else that you’re competing against fades into gray and disappears from the periphery.

It was always only about you, your focus, and what you were preparing to do to the guys who had the gall to get onto the gate with you, anyway. That’s what pure competition is.

Coming down the backside of the step jump, I gave it everything that I had knowing that we had another 50 to the line. Lungs, legs, and everything burned like gasoline had just been poured all over and ignited with a match. The scorers appeared out of the gray and I let out an involuntary growl/yell as I pushed and prepared to throw the bars forward in a last second lunge at the line. Twenty yards to go.

Then, I saw dark spots. Lots of them out of nowhere. They filled most of my vision. Concerning and never had it happen before. Then, the legs flared and locked up. Lactic acid.

I managed to stay up and cross the line before the other two guys making a run on me. The rest was ugly.

Through the spots, I saw the eyes grow wide on one of the people handing out place tickets as she realized that I was coming in hot and not necessarily for the #1 ticket she was holding up high. I flew to the right of her, laid it down on the side in the gravel, and went right into the fencing that separated the staging area from the bikes coming off the track at the line. It took some time and some heavy breathing for the legs to clear up to where I could flex or move them again. The spots stayed for a while. I was terrified and made a cardio appointment the following Monday thinking the spots meant something with my heart was going on.

The heart doctor had me walk for just over two minutes on his treadmill before he kicked me out: “I’m not sure what the root issue of your problem is”, he said- “but, it’s not related to your heart. You’re the healthiest person I’ve had on this treadmill in a long time.”

What I was dealing with took me another four or five years and a total of 10 eye doctors to figure out:

It was Post-Traumatic Vision Syndrome.

I’d never heard of it before, but it turns out that it’s common. Vision is one of the first things to go when you hit your head or take a big impact.

It’s so common in concussion patients, that it’s upsetting that knowledge of the condition really hasn’t pervaded most concussion clinics and doctors. Unfortunately, that’s still true to this day- nearly 13 years after this event that I’m describing. It can range in severity from just a slight convergence insufficiency which will make your life extremely difficult by itself to all kinds of other horrendous symptoms at the worst end of the spectrum.


In fact, I saw no less than 9 eye docs for these spots, lines, shadows, blurs, and holes in my vision and all were baffled. They were thick when I exerted myself and subsided when I rested. I moved on- and suffered, but kept racing. I was ignorant to what was going on with me.

A few years later, I had the crash that finally knocked me off the bike for good. With that, came a diagnosis of Post-Concussion Syndrome on top of the early vision problems that were also caused by crashing and impact. I had to figure out how to deal with both while keeping my feet glued to the planet. It was miserable and hell on earth.

One day, I wrote a desperate email to a famous neurodevelopmental optometrist named Doc Ruggiero and I can’t really overstate that I was “desperate”. My vision issues were worsening, and it was making it hard to live. I was at the end of my rope and really suffering.

She called me on a Saturday and left a voicemail that started out with, “I can help you”. I broke down.

She was so busy that it took six months to get in there, but when I finally did, I was treated to a 5 to 6-hour visual examination that would have given the Spanish Inquisition a run for it’s money. I puked during breaks throughout it and the physical and mental exhaustion was off the charts. That said, Doc Ruggiero uttered the magic words after the first hour:

“I can see everything that you’re talking about, Jay.”

I cried. Right there in the room. Doc might have cried a little, too.

“Jay, I see hallmarks of brain injury here.”

That was all that I needed to hear after so many appointments where mere OD’s and Ophthalmologists looked at me with no clue. Still, the words resonated in my mind.

“Brain Injury”.

As far as I knew, I “only” had around ten concussions.

If I only knew that I had closer to a hundred. Each shot that was strong enough to provoke seeing a flash or stars needed to be counted as one. It was the signal of the chemical and mechanical side of concussion: the streaming of potassium from stretched neurons after an impact.

Take all of those and the thousands of other shots I’d absorbed going all out over the course of my life, and I was now in trouble. These things accumulate. Doesn’t matter if you land flat on your ass- they all add up and your head still gets that shock transmitted into it.

I’ve been with Doc Ruggiero now for the past 7 years and progress takes accommodations (glasses with any number of prisms, tint, filter, binasal occluders, etc), vision therapy, and staying dedicated. My visual and vestibular system has gone from “non-functioning” during that time to “functioning, but fragile” now. Most importantly, we are measuring healing in those systems that may be at a glacial pace, but it’s still healing.

I spent almost six hours with Doc yesterday getting my yearly eval. It’s always tough. At the end of the day, I had a chance to ask her why it’s so important for those of us with contact-related issues to see someone with her qualifications. She was generous enough to answer below. Don’t sweat my eyes that took four drops each to dilate my pupils- I can’t see while we’re talking:



I may very well have CTE from all the damage that I’ve taken and some of you may as well, but that’s a different (yet related) topic. At the very least, there IS a tax to pay when it comes to contact sports. That tax will be paid in terms of white matter damage (short fuse, hard to concentrate, moody, etc) and visual damage. The earlier you start, the more you’ll have. Contact athletes will not escape playing without it- period and no amount of arguing from fans who love contact sports is going to change that fact ( https://tinyurl.com/y69m67ap , etc) . Just go ahead and get used to it.

If you play contact sports, prepare to pay the tax.

What you can do is be informed and understand what docs you’re going to need when it comes time to pay up- because you WILL pay up. I’m not putting this info out there for me- I’m putting it out there for your kids or you so that you have the road map that took me far too long to figure out via trial and error.

Visit a couple of sites for more info:

www.covd.org

https://noravisionrehab.org/

https://noravisionrehab.org/uploads/media/NORA_VMSS_PDF_9-16-18_FINAL.pdf

You can find doctor locators by area on those sites. Utilize them and stay away from garden-variety docs. They cannot help you, but these people will. Our lack of access to these FCOVD’s as well as our medical providers’ lack of familiarity with them is absolutely causing a whole lot of athletes to be walking around with undiagnosed vision issues from contact. That will not help any of them in the most crucial learning period of their lives and will result in poorer grades, learning difficulties, and less opportunity for a good job.

I shudder to think of all of the kids who were intelligent, but branded as hyper, inattentive, and not focused who weren’t handled correctly in school because they were actually suffering from an injury.

See the right providers. Please. This is the roadmap. Aside from the vision people, you’ll need a concussion specialist at the very least on your team.

Good luck,

Jay Fraga

PCS: A Parents’ Perspective

{Editor’s note: In 2012, I was contacted by a then-sophomore in high school who was having trouble dealing with the rigors of PCS on top of trying to be a student. She asked me to help her work through things. What came out of that has been a wonderful friendship with a very resilient girl who is now a freshman in college and who still soldiers through some absolutely incredible symptoms. She always tells me how tough I am, but I think she’s tougher. It has also earned me a director on our board in the form of that very resilient girl. Who better to help me guide the trajectory of The Knockout Project? I am thankful that Alicia has such great parents who will go to such lengths in her search for good health.  –Jay}

jensensFrom left: Mike and Joy Jensen with their children Mike, Alicia, Sean, Ashley, and Matthew

By Mike Jensen

As any parent would agree, the most difficult and stressful job you could ever have is raising a child.  You take all of your experiences that you learned in life, and use them to guide and teach your children to meet the challenges that life will throw at them, and hopefully they can build a better life for themselves and future generations.  But, there is one thing you can never prepare for.  That is if your child is sick or injured.  When Alicia got her concussion in April 2012, I was concerned, but, with the little experience I had with concussions, I didn’t know what to expect.  When I was in youth sports, if someone got hit in the head, or, as we used to call it “got his bell rung”, it was no big deal.  Even if the word concussion was mentioned, the consensus for getting better was a few days rest.

I learned a lot since April 2012.  Alicia was 15 at the time, been playing soccer since she was 6, never got too badly hurt.  Not even a minor injury would set her back too far.  On this day, she was defending a play when the opposing player attempted to kick the ball down into the offensive when it struck the side of Alicia’s head.  She went down, got right up, slowly, and said she was fine.  That was right at the end of the half, so there was no real question of removing her form the game, the half was over.  After half time, she felt OK, went back out, and right at the end of the game, she got hit again.  Hit twice the same way in the same game.  After 10 years of soccer, she played her last game, and has had a debilitating headache ever since. Continue reading

Joanne Stankos, Mother of Twelve Year Old Taekwondo Black Belt Jaden, Tells “Jaden’s Story”

{Editor’s note: This piece speaks for itself, but I just wanted to mention how proud I am of Jaden and his family for the work they are doing during their journey. Jaden, you’re an impressive young man and a true warrior. I hope that I get a chance to meet you and your Mom at some point! –Jay}

By Joanne Stankos

newjaden

This is Jaden’s story.  His story of living with Post Concussion Syndrome.  He would write this on his own if he could, but he can’t.  His story is like so many other suffering with PCS.  But his takes a slightly different turn.  But I am getting ahead of myself here.  I am his mom.  I hope I do him justice by telling his story.  He will definitely let me know.

July 2, 2013.  That is when Jaden’s life changed.  I can still hear the deafening sound of the arena going silent when it happened.  It was the only time I have cried immediately upon seeing Jaden get kicked.  I knew that this time was different.  Little did I know how different.   We had just entered into the world of PCS. Continue reading