Category Archives: KO Project Round Table Members

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

Finding Some Relief

By Madeline Uretsky

It seems as though every summer for the last 5.5+ years I’ve tried some new treatment, plan, regimen, or whatever you want to call it. Some things have worked, and others have not. I’ve tried everything: natural and unnatural, medical and alternative, traditional and obscure. Except for one procedure that many people in the concussion community have tried. And it worked.

I discovered this procedure after reading posts on concussion/TBI Facebook groups, and talking with some friends who have tried it. For some, it works and changes their lives. For others, it does not, and it’s just another failed treatment. I was hesitant to try it for several reasons; I was nervous about the side effects and recovery time, medically intervening this many years later, and of course, fearing the needles.

With mixed reviews, and reassurance that it would not cause any adverse effects, I was optimistic and excited that it may work for me. I have an incredible trust in my neurosurgeon who has been my guide over the last 5.5+ years, so on June 12th, 2017, I underwent a bilateral greater occipital nerve block.

In simple terms, I had a few needles stuck in the back of my head while I was lying down on an operating room table. I was given Valium beforehand, and the procedure itself took no more than fifteen minutes. I was injected with steroids to help reduce the swelling of the tissue around the inflamed nerves in the back of my head that are partially responsible for my daily headaches.

I did not notice relief right away. I was so exhausted, and so out of it after the procedure that I couldn’t tell what was going on. The back of my head was numb from the anesthetic that I was given, so I had to wait for it to wear off before noticing a difference in pain.

Furthermore, a few days later, I had one of the worst days of pain in years. I was extremely dizzy, nauseous, light sensitive, weak, having alternating hot flashes and chills, and elevated head pain. But the next day, and every day since, my head has been better than ever. My constant daily headaches aren’t completely gone, but they are definitely less painful, and less frequent.

Particularly, in two situations:

  1. Hunger
    • My constant headache and head pressure becomes much worse when I’m hungry.

Since this procedure, my head hurts noticeably less when I become hungry.

  1. Changes in weather
    • When the barometric pressure drops, my constant headache and head pressure becomes much worse.
    • Rain, snow, sun, or more than twenty-degree temperature change in a day causes my symptoms to increase.

Lately, it’s just been the sun, even after several days of rain.

I went for a follow up two weeks later, and my doctor explained how the effects may last anywhere from three to six months, but may last forever. He said that once people break their pain cycle, that sometimes, the pain goes away completely. I’m optimistic, but realistic. My head pain is down a whole point on the checklist/scale, but it’s not at a zero.

He palpated the back of my head on and around the injection sites, and I felt nothing. No pain at all. I was in complete disbelief, but relief. I’ve only known pain for the last 5.5+ years, and now I’m back to some sense of normalcy. Being one of his longest-running patients, my doctor was ecstatic to see me feeling better. I follow up again in six months, and I’m hopeful that this could be the solution. I am so thankful that I tried this procedure, and I am looking forward to seeing how long the effects will last.

For More Information:

  1. Johns Hopkins Medicine

http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/nervous_system_disorders/therapeutic_pain_blocks_134,129/

  1. Ohio Health

http://www.medcentral.org/Main/OccipitalNerveBlock.aspx

 

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A Letter to Myself, Two Years Ago

{Editor’s note: Alicia Jensen is a freshman at Towson University. She was diagnosed with post-concussion syndrome her sophomore year of high school. After writing this, she read it and sat on it. She realized that it reminded her of Luka Carfagna’s wonderful piece. I told Alicia to hand it over and that it was important to publish it anyway. –Jay}

By Alicia Jensen

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Alicia, second from right 

Dear Alicia,

You’re in pain. I can feel it now, and I know exactly where you are: Probably laying in bed, in the dark, alone, praying and wishing for the pain of PCS to go away. You had a tough day at school today, huh? head on the desk, waiting for the bell to ring just so that you can go to another one for 52 minutes. I wish I could tell you that tomorrow will be easier and that you’ll be in less pain, but I can’t. Continue reading

A Concussion Photo Essay: This Is My Story

By Jay Fraga

Once, there was a little boy. The boy loved to ride motorcycles with his Father. The boy was transfixed with speed and g-forces and devices with two wheels.

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The boy dreamed of two-wheeled heroes; of men with nicknames like, “Hurricane”. Continue reading

The 504 Plan: School Accommodations and Protections for Your Concussed Student Athlete

By Alicia Jensen

After student athletes suffer a concussion, the first thing that pops into their heads is, “When can I play again?” What many might not realize at first is that the effects of concussions are way more than just physical in nature. Concussions mentally and cognitively impair that athlete either along with the physical symptoms or even after they have been cleared to go back on the field.

Many student athletes like me who are diagnosed with Post-Concussion Syndrome may notice some cognitive symptoms as they return back to school. Symptoms such as memory loss, confusion, a short attention span, and the terrible list goes on and on. Continue reading

Press Release: 2008 US Olympic Bronze Medalist and Three Time World Champion BMX Racer Donny “dR” Robinson Joins The Knockout Project’s Board of Directors

FOR IMMEDIATE RELEASE:

2008 US OLYMPIC BRONZE MEDALIST AND THREE TIME WORLD CHAMPION BMX RACER DONNY “dR” ROBINSON JOINS THE KNOCKOUT PROJECT’S BOARD OF DIRECTORS.

Belchertown, Massachusetts – January 17, 2013- The concussion education initiative, “The Knockout Project”, announced today the appointment of Donny Robinson to its board, the “KO Roundtable”.

Robinson, the 2008 Beijing Olympic Bronze Medalist in BMX Racing, brings valuable experience, knowledge, and reflection to the table in terms of concussive history. Robinson has suffered over twenty concussions in his two decades worth of racing. Recently, Donny has been speaking out to racers and parents about a subject that he never really thought twice about; while trying to convey the serious nature of identifying concussions, sitting out until healed, and seeking a doctor’s advice before returning to action. Continue reading

Fixing Concussions with Band-Aid’s: How Effective is the NFL’s Defenseless Receiver Rule?

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By Kevin Saum

Improving health and safety in football became a passion of mine after I suffered from second impact syndrome while playing in a high school football game and fell victim to the culture of toughness that exists in all sports. Despite the fact that football nearly took my life, to this day I still love the game and I do not regret one play from my 10 years of participation. Many of my fondest memories are from playing high school football and I credit the game and my coaches for making me the man I am today. Because of the intense passion I have for football, I become infuriated when I see professional players undermining the NFL’s attempts to make the game safer by taking cheap shots on defenseless receivers. Continue reading

A Wife Opens Up About Living With Someone With Post-Concussion Syndrome

{ Editor’s note: My finger lingered for a while before hitting the “post” button on this piece. It did so, because it’s painful. It was written by my Wife, who I love very much. The physical pain of this fight is equally rivaled by the knowledge that your family is hurting along with you, and that you’re responsible for putting yourself and them in this position. It’s not easy to come to terms with that. But, if we’re truly going to be educational about the aftermath of concussion and ignoring your injuries, then this has to be spoken about. – Jay }

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By Jessica

I can’t focus today. I have to grade eight more papers and a week’s worth of discussion posts. Yet, here I sit staring at my macbook hoping that it will just magically happen. I’m sitting in my favorite coffee and tea café listening to the chatter of others and the espresso machine. It’s relaxing. I don’t have to worry about anything (other than the fact I’m not getting any work done).

Every day, I wake up with a knot in my shoulders. I’m stressed out before I even leave my bed. I bring a lot of the stress on. I try to do too much. I try to make others happy while often giving up my own simple pleasures (I really want a f’n latte right now but I’m sipping black tea with no sugar). Continue reading

Jay Writes: Dear Diary.

Dear Diary:

My life feels like a race. But, it doesn’t feel like the kind of race that I’m used to being in.

Everything about it seems heightened, urgent, and rushed. I’m in a race to regain the old me. I’m in a race to spend as much time with my family as I possibly can. I’m in a race to educate others about concussions, so that they don’t have to experience what so many of us have experienced as a result.

I’m haunted by the prospect that while intense physical therapy seems to be bringing my visual and vestibular symptoms to a livable (not normal; just, livable) state, that there is still something happening inside my head that is degenerative in nature. I’m a prisoner to my own thoughts, and they are constant. I have always been very analytical in nature and highly sensitive to noticing nuances; differences in every aspect of my experience, whether in terms of subtle sounds that my car was making, a change in weather, or the shift in a person’s body language. That feature has always been my internal alarm mechanism, and it has never done me wrong when it came to illuminating issues. But now, I find that I use it to discern changes in my cognition, and to take notes of it. I can’t help but to itemize those things and extend them out to their logical conclusion in a mental equation.

Our intellect is our lowest common denominator. It’s all that we have. The prospect of it slowly going away is frightening. Each instance of cognitive fog: forgetting words, not knowing why you’re in a certain place, seeing friends in public and not recognizing their face until just after it’s clear to them that something is amiss is terrifying. Seeing the look on my Wife’s face when she sees me struggling to remember something that I wanted to tell her is crushing. And, I think that it all adds up to something. Or, at least, that’s my gut instinct.

For a person whose gut has always served them well, this is a scary road to walk on.

Fall sports are just starting up again. Already, my inbox is on fire from people who’ve just been diagnosed with a concussion or the parents of kids with one. And, as a result, I guess that I have gotten what I’ve asked for: an opportunity to warn others about the pitfalls of not taking concussion seriously as well as not understanding how to deal with the aftermath. Understanding those things while I was racking up concussions could have made an incredible difference for me and I can’t even to begin to tell you about what the regret of putting yourself and your family in a situation like this is like. If you are reading this, I am dedicated, however, to you never finding out what it’s like.

I don’t know where this goes. But, I hope people will listen.

Jay
The Knockout Project

Jay Fraga Interview With Mike Carruth of BMX News

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On Tuesday, July 23, Mike Carruth of BMX News spoke with Jay Fraga about concussions in sports and why Jay started The Knockout Project. You can download or stream the interview here:

http://www.blogtalkradio.com/bmxnews/2013/07/24/bmx-news-announcers-tower-live–july-23-2013-1