Monthly Archives: February 2013

Sara Birkholz, on Post Concussion Syndrome, From the Trenches

imagesaraThe past several months I have picked up and read books about personal accounts of survival. The authors have amazed me with their strength and their new outlook on life once they have emerged from whatever dark tunnel or trial was placed in their life. As I finished reading each story, however, I could not help but wonder what their story would look like if they had written it in the midst of their battle. I have struggled to write this article because I do not yet have the insight of seeing the light at the end of the tunnel. I do not know how my “crisis” so to speak, will turn out. I decided in a way this is a good thing because the purpose of The Knockout Project is to educate people on what the ramifications of a concussion can be. Stepping into the life of someone who is currently living day in and day out with the consequences of a concussion can shed a lot of light on why it is so important to protect ourselves and those we love from being injured.

First I would like to start with the definition of concussion. A concussion is a traumatic brain injury that alters the way your brain functions. In the past when I heard someone had suffered from a concussion, I did not think much of it. My first reaction was NEVER “Bobby received a traumatic brain injury today during football practice.” Instead I thought, “whew, Bobby had his bell rung a bit at football practice and should be fine.” I am sure that is the way the majority of people feel about concussions. I thought this way about concussions until last August.

On August 7, 2012, our family decided to end a fun three day trip to Duluth, MN by going on the new Alpine Coaster at Spirit Mountain. After all, it was on the way out of town and the kids were pretty pumped about riding it. I hopped on the sled like contraption with my daughter. As we left the boarding station the employee told us “go as fast as you can, the sled is attached to the tracks and you cannot be thrown off.” Of course once my 10 year old heard that great news, we were full steam ahead. As I saw the first turn approaching I felt like we were going much too fast and leaned forward to grab the brake. I was too late, and because I had not leaned into the turn and was in an awkward position, I got whipped to the right. I actually felt my head snap and was dazed the rest of the way down the mountain. At the bottom I told my husband and kids that I did not feel well and that I was jarred on the first turn. We all just laughed and talked about mom being a wimp and getting too old to go on rides.

Within 48 hours from my ride down the mountain, I started having dizzy spells.

Within 72 hours I ended up in the emergency room because I could not stop throwing up. I did not even initially associate my symptoms with anything that had happened at Spirit Mountain. I thought to have a concussion, you had to be knocked out. Many tests were ordered to figure out what was going on with me and why I was suddenly having a “neurological event” (that is what the doctors described it as on those first few days). Eventually, I was sent home with the “good” news that my CT and MRI were both clear.

It was not until about 10 days after the accident, and continued nausea, vomiting and dizziness, that I called the neurologist to tell him about the Alpine Coaster ride. He confirmed that I did not need to be knocked unconscious to have a concussion and that I was indeed having concussion symptoms. He told me to continue as I was and all my symptoms should clear on their own within 6 weeks.

Fast forward to today, February 26th, 2013. I am almost 7 months post accident, and as I sit and type this article I am wearing sunglasses because the back light from the computer screen is excruciating for me. I have not had one moment since August without nausea, dizziness, light sensitivity, and disequilibrium. Up until Christmas, I was still vomiting almost daily. Even bending over to get laundry out of the dryer makes me feel like I am spinning so much I have to rush to a toilet. Every time I am in the car and we go from moving to a stop I have a wave of nausea come over me that is so severe that I have to prepare and have bags in the car. Entering into a big box store, like Target, makes me feel even more off balance and dizzy. I try to wear a baseball cap and sunglasses into stores but even that does not take away the increased nausea and disequilibrium that the fluorescent lighting causes. From the moment my feet hit the floor and my eyes open this is my current “normal”.

Before this accident I was an avid runner, taught spinning classes at the local gym, practiced law part time, helped coach my kids in various sports, spent tons of time with my girlfriends and family and absolutely loved and embraced every day. Today I struggle to even get through a day. I have prayed to die over and over because my physical symptoms are so horrendous. I cry myself to sleep many nights because I know in the morning I am facing another day like this. I feel awful 100% of the day. I have severe nausea 100% of the day. I am dizzy from the moment I stand up. I feel off balance 100% of the day. Grabbing milk and juice quick from a grocery store is excruciating with all the lights and stimulation.

People do not understand what it is like to live this way. I have gotten everything from “what is your problem, you just have a concussion” to “certainly you can’t still be having symptoms?!” But the worst was recently when I retrieved my file from the clinic and the doctor had written “hypochondriac” and “health anxiety” as his conclusions to my problems. ARE YOU KIDDING ME??!! I could not make up these symptoms if I tried. And frankly, I would be living my life to the fullest not spending time at a clinic. That is all I want and pray for…..my old life back. It is a very scary moment when you are still sick and miserable every second of the day and the doctor who was in charge of “helping” you does not even understand concussions and doesn’t even believe you.

I am now seeing a new set of doctors in Minneapolis, MN who truly understand post concussion syndrome. Every time I leave their offices, I feel even more educated about brain injuries. In two short visits, they have gotten to the bottom of the dizziness and nausea. Apparently, my whole ocular system was knocked out of whack in the accident and each eye is focusing on a different objects and sending different messages to my brain. The scary part is about 50% of the brain is devoted to visual processing. So, I know I am still facing a long road to recovery with my therapists. I am also undergoing vestibular therapy to get my balance back. I never realized that one small, or what I thought was small, whiplash event could damage so many centers in my brain.

Finally, living with PCS is a very lonely journey. I have learned that as your symptoms persist, everyone moves on with their lives. Every once in awhile they throw you a “how are you?” Sometimes I tell people things are a little bit better only because I do not want to go through the process of trying to describe my symptoms. Sometimes I tell them I am little bit better because I wish so badly they were getting a little bit better. But the honest answer is “I am the same.” I have not seen any recovery in over half a year. PCS is a time when you really learn who your friends and loved ones are, and you learn that health, above anything else, is a true blessing you took for granted every day.

As you can see, when you are in the midst of a dark tunnel the story is not exactly inspiring but it is real! This is a very frank look at my current life with post concussion syndrome. In addition, you get to see how absolutely devastating a head injury can be. I do not have a history of concussions. This is my story after just one concussion event. All it takes is one event to have lingering, debilitating post concussion symptoms. I want people to realize that risking your brain to go back into a game is not a good decision. Riding a bike or going skiing without a helmet should be unthinkable. I could go on, but ultimately I want to educate others as much as possible, because even though I was in a freak accident, other people have the chance to step away from a sport or event before more damage is done. Also, I want to emphasize how important it is to find the right doctors and therapists if you are having lingering symptoms from a head injury. Trust your gut. The doctors are working for you and this is your brain not a cut that needs stitches.

I know in the end, God never gives us a challenge we cannot handle. With the help of my husband and two wonderful kids, current doctors and therapists, and the love of all my other PCS pals, I know this has to get better and I can continue to persevere. I plan to continue to update all of you on my progress in therapy and hope I can help anyone who is currently going through this. I hope someday I can write again with the insight of recovering from this monster. People with head injuries have an invisible injury. We look healthy on the outside, but deal with very real, disabling, miserable side affects every day. Concussions are not something to take lightly. As Sir Francis Bacon said, “Knowledge is power.” And now you know.

Mental Toughness: The Role of the Athletic Mindset in Perpetuating the Concussion Crisis

By Jay Fraga

raceConcussion is a funny thing. As an “invisible” injury, the odds that it will be dismissed by any number of people in a position to do something about it, including the player, are high. It’s difficult to quantify a concussion visually. It is not difficult to quantify a compound fracture of a leg. A concussed person can look you in the eyes and say, “Hey, I’m fine to play. Put me back into the game” and many people will believe them at face value because they don’t have much visual evidence to the contrary.  A player with a compound fracture of the leg could look you in the eyes and say, “Hey, I’m fine to play. Put me back into the game”, and you would instantly know that they’re out of their mind. “Uh, apparently, you didn’t see the gore that is your leg. Forget it”.

So, why is there a difference in reactions among players, coaches, and even many medical personnel between the two injuries?

In terms of long-term ramifications, I’d take a compound fracture of the leg over a concussion any day. Before someone calls me a maniac, I should point out that I’ve suffered badly broken legs as well as multiple concussions and the aftermath is not even close. Brain injuries of any kind need to be avoided at absolutely all costs. This is coming from a man who once thought that learning how to walk again after breaking both legs was the toughest thing that he ever had to do and would ever have to endure again. I was wrong on that one.

On top of the strange denials that invisible injuries like concussions evoke from society at large, the condition also has to contend with athletes who have been trained, many since an early age, to prevail over any obstacle. I’ve read many articles recently where the authors can’t seem to comprehend why players can’t grasp the enormity of concussions and they express shock at such instances. “Football players? They knew what they were signing up for. How could anyone not know that football is a dangerous game?” Right?

Not so fast.

Why can’t athletes grasp the severity of concussions, pull themselves from games, and allow themselves to be properly treated? Take money out of the equation. It’s still pretty simple: Athletes are conditioned mentally to succeed. Successful athletes understand that mind over matter isn’t just a cliché; it’s truly the Law of the Land. Mental toughness is probably the most important ingredient to success in sports. Could there be any other reason why professional team franchises employ sports psychologists to build up their players?

Mental toughness, the very same ingredient that is essential to success in sports, is responsible for the majority of pervasive denial by athletes of the severity of concussions.

As a young, impressionable amateur athlete, the mental toughness that was ingrained in me by my Mother afforded me success. As I won more, the more ingrained that concept became in me. Putting in more effort than my competitors (along with the belief that I was just plain faster than they were) created a little boy that believed that he could surmount any obstacle in front of him simply by willing himself to succeed. That little boy grew up to be a man, and he carried that ethic with him. It served me well in athletics, and it served me well in life; right until the point where I denied the obvious severity of my concussions. To me, they were an annoyance; just another hurdle to get over so that I could prepare for the next race.

Digging into it, I never was consciously aware that there was a problem, or that I was injured beyond something minor. I feel that my mindset allowed me to gloss over details that were serious warning signs as opposed to knowing full well that I was hurt and making a conscious decision to go out and race hurt, further imperiling my health. My friend Kevin Saum wrote about his blurred vision (on top of a host of other symptoms) in a football game where he convinced himself that sweat running into his eye was responsible for it. Further that, I’ve had situations where I’ve been completely knocked out and woken up surrounded by EMT’s who ask, “Are you OK?”, and I’ve reflexively blurted out, “Yes, I’m fine” without even knowing what planet I was on. What’s important is that I wasn’t making a conscious effort to deceive anybody in any of those cases, but there was absolutely some mechanism that was leading to me to speak authoritatively when I had absolutely no clue what I was talking about.

Instances like those lead me to ask the question: As motivated athletes, are our brains tricking us?

As concussion awareness advocates, our mission is two-fold: Along with raising awareness of symptoms and ramifications of concussion, we must also find a way to address the mental toughness conundrum with regard to dismissal of concussion symptoms.  We can’t look expressly to coaches, because coaches were once players too. As such, they’re wired the same way as the athletes are.

It is incredibly hard to teach new dogs new tricks. It’s even harder to teach old dogs new tricks.

NJ HS Football Player and Current Georgetown Grad Student, Survivor of Second Impact Syndrome, On What Motivates Him To Raise Concussion Awareness

By Kevin Saum

saum1In Steve Job’s commencement address to the class of 2005 at Stanford University, he made a profound statement which impacted me greatly.  While speaking about his road to success, he stated, “You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something: your gut, destiny, life, karma, whatever. Because believing that the dots will connect down the road will give you the confidence to follow your heart, even when it leads you off the well worn path.”  This quote describes the events in my life, which have led me to become an advocate for concussion awareness.

In practice, the morning after our game versus Livingston High School, I began to experience excruciating headaches. These headaches were unlike any I ever had before.  While running at practice, it felt as though my brain was bouncing inside my skull.  As a two-way starter at fullback and linebacker, I liked to think I was a physical player, but I was avoiding contact in practice and voluntarily took zero’s to sit out in gym class in the days leading up to our next game, because my head was hurting so badly.  At that time, concussion awareness was just beginning to pick up momentum and I was extremely uneducated about the injury. I was under the impression, that if I was not knocked unconscious, vomiting, nauseous, and had no memory problems, my headaches could not be the result of a concussion.  Also, as a senior captain, I was afraid to tell my coaches and our athletic trainer about my headaches.  At seventeen years old, my main mission in life was try to win a state championship with my team and for my coach to think I was tough.  Sitting out of practice and missing our next game because of a headache was certainly not going to help my cause.  Therefore, that option was out of the question.

On the day of our next game, I did participate in gym class.  However, while running around the track for our warm up, I ‘jokingly’ mentioned to some friends that I was probably going to die that night in the game.   I said this because of the excruciating headache I was still experiencing.  Nevertheless, I swallowed four Advil, and ran out onto the football field for what turned out to be the very last time.

It was an eerily foggy Friday night in October 2007 that ultimately led me to where I am today.  It was a night when my hopes and dreams as a seventeen-year-old high school senior instantly became physically unattainable. At the end of the first quarter, while reaching for the goal line, I received a blow to the side of my head, which left me with blurred vision.  I talked myself into thinking that it was just sweat that had gotten into my eyes.  Despite not being able to see, on the next play, I jumped over the goal line for a touchdown (both pictured below). The adrenalin rush after the touchdown provided temporary relief to my throbbing head.

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In this game I was also playing safety on defense.  This was because I had been playing with a strained rotator cuff and separated right shoulder for weeks.  There was literally no way I could make a painless tackle with out drop kicking the ball carrier.  Not surprisingly, I missed an open field tackle in the next defensive series, which led to a touchdown.  Time to make up for my mistake and score another touchdown, right?   Fate had a different idea.  Just before the end of the first half, I ran the ball off right tackle, and immediately an unblocked defender wrapped his arms around my legs.  Just as I was about to hit the ground, I looked up to see a white shoulder pad coming straight at my head.  Upon impact my head slammed into the turf, and I jumped up to see why the referee had not thrown a flag for a late hit.  However, my concern for the penalty quickly subsided when I realized that I could no longer feel my legs, and the pain in my head had become so excruciating I could not even think.  I was helped to the sidelines by my teammates, and then collapsed and went into a grand mal seizure.  I was then airlifted to a local trauma center, where I was diagnosed with second impact syndrome (severe brain swelling after an impact to an already concussed brain) and a Subdural Hematoma (brain bleed).  I was given only a 50% chance of survival and endured two head surgeries to relieve the pressure on my brain.  Moments before my first surgery the doctor came into my room and told me that I would never set foot on a football field again and play the game I had dedicated so much effort to for 10 years of my life.


Kevin’s Story On CBS News During Superbowl 2010 Coverage

At that time, I could not understand why something like this would happen to me. Almost six years after that night, it is now clear to me how the dots connect. If I had never suffered that life-threatening injury, my life would be immensely different. In the months following my injury, I felt lost and uncertain of my future.  Eventually, I chose to attend Rutgers University because it was a highly respected academic institution.  My first year of college was a struggle.  Football was the single aspect of my life that I was most passionate about, and it was now missing.  I struggled in my classes not due to a lack of effort, but due to a lack of interest, clear goals, and passion.

At the beginning of my sophomore year, I knew I needed to get football back in my life in some manner.  That year I was hired as a student manager for the Rutgers football team, and this is when my life began to turn around.  I enjoyed going to practice every day and feeling that I was a part of the team.  It was as close as I could get to playing, and I knew I had to pursue a career in sports because it is what I am most passionate about. Also during this time, I began telling my story and educating other athletes on the importance of concussion awareness. I did this through guest lectures in courses at Rutgers, speaking at local high schools, and even being interviewed on national television by CBS during the week of the Super Bowl in 2010. At this point, I knew my injury had happened for a reason.  I was given a platform to tell my story and keep other athletes from making the same dangerous mistake of playing with a concussion. My interest was sparked, my passion was revived, and my career goals were now clear.

During this time, Tom Farrey, an investigative journalist for ESPN covered an E:60 story on Preston Plevretes.  Preston also suffered from second impact syndrome, but unfortunately, he experienced many more complications from the injury than I did. Preston struggles to eat, walk, and talk after his injury. I was deeply impacted and inspired by Preston, especially by his determination to have his story heard so other athletes would not make the same mistake that we made.  At the end of the segment, they showed Preston attending speech therapy sessions.  He was doing this to accomplish one of his goals, which was to speak publicly about the dangers of playing with a concussion.  Tom Farrey asked Preston, “What is the hardest part of all this for you”? Preston replied, “Waking up everyday, and knowing I can’t do all the things that I want to do”.  Teary eyed after watching the episode, everything began to make sense.  Other than not being able to play football anymore, I am still able to do everything I did before my injury.  I knew I had to be Preston’s voice.  I saw how much he struggled and how great of an impact he was making on the lives of athletes.   The same drive, passion, and work ethic I had on the football field was then translated to my new goal of making football, and all sports for that matter, safer for athletes of all ages.

New Jersey HS Soccer Player On Life With Multiple Concussions

By Alicia Jensen

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I was hit. Hit hard. I got up, and stumbled around. I was losing my balance, seeing stars and everything was spinning. I had no idea where I was, or what I was doing. I didn’t even recall the date. The referee blew the whistle to stop the game, and as everyone took a knee, I lay there in a complete daze. He said to me, “21 are you okay?” I, of course, said, “Yes, I’m fine. Just keep playing.”

I turned to a few of my team mates and asked questions like, “Where are we? How have I been playing? What’s the score? Who’s their best player?” I knew something wasn’t right, but I didn’t want to admit it. I let my teenage attitude take over and kept playing. Reality hit me again late in the second half with another blow to the head and the realization that I should have stopped after the first hit.

April 22, 2012 was the first day of my new “life”, of my new “normal”, and of my new “journey”.

I would be lying if I said that this concussion hasn’t changed my life. It has completely changed it in every aspect possible. It has changed me physically, emotionally, mentally, academically, and socially. It has put me in a position of trying to find myself, which, for a 16 year old, is still in the process of happening to begin with.

In July 2012, for my 16th birthday, my parents took my siblings and I to Disney World. My doctors had restricted me from any rides or attractions that would aggravate my symptoms. Once again, I didn’t listen. I went on the legendary and iconic “Rockin’ RollerCoaster”. For those of you who have never been on it, it is a concussed person’s nightmare. I didn’t know when the ride was going to start and didn’t pay attention to the “Keep your head back” signs. The ride started and I hit my head on the seat and immediately blacked out. *Bam!* another concussion. My doctors ruled this one as “AMA”, or, against medical advice.

I didn’t realize how stupid my decision was until I had to start all over again at Vestibular Therapy.

I just wanted to be a kid; I wanted to live my life. I knew that I wasn’t supposed to be on those rides but for some reason I didn’t care. Afterwards, I just wanted to be reassured that this concussion hadn’t totally taken my life away. Let’s just say I didn’t get that reassurance.

Fast forward to August 2012- I was tested by a Neuropsychologist and was put on half days for school. To be honest, I didn’t follow that accommodation as much as I should have. I didn’t want to be at home. I wanted to be at school with my friends and actually be around people. My doctors didn’t understand that the time I was out was instructional time that I was losing, and I was falling behind. In October 2012, I was put on a medical 504 Plan, which is basically just an official medical accommodations plan for school. For some reason, this basic plan hit me hard mentally. How did I go from an honor roll student and A’s and B’s, to needing help everyday? It was frustrating because I wasn’t used to needing help, as I am so used to doing everything myself. Asking for help when I need it is a huge struggle internally that I still deal with, even though I know it is necessary and that it is okay to ask for help.

I can’t remember what being a normal teenager feels like. Forget parties, because crowds make me feel overwhelmed and anxious. Forget football games, because the lights and the noise are a killer. Forget movie theaters and big restaurants, because the dim lighting and people give an instant headache. I shouldn’t have to live my life like this, wondering every day not IF I’ll get a headache, but WHEN I do get a headache, how bad it will be. Should I go home early from school? Should I not even go to school? Questions I ask myself every day aren’t questions a normal teenager should have to ask themselves on a regular basis.

I can’t focus in school with a headache. Sometimes it’s a waste of time even being in class because I’m not actually doing anything but sitting there with my head down and praying for the class to end and for the teacher to turn the lights out and stop talking. But, I know that this feeling won’t last forever. I know that I’m headed the right way to a full recovery. I know that I’ll get into college and although it may be a struggle, I know that I can do it. I won’t let my dreams of becoming a Doctor specializing in Sports Medicine be changed because I can’t handle college.

Sports have been my life since I was 4 years old. I have been out on that soccer field every week and weekend for 12 years and never missed a chance to kick the ball around. Soccer has always been a way to release my stress and forget about all my problems. That’s why hearing the words “Alicia, I don’t medically advise you to play soccer again” were some of the hardest words I have ever had to hear in my life. Being told you can’t do something that you have always done is hard to accept. I didn’t know anything but soccer and I didn’t want to know anything else. I liked the way things were.

I guess you could say I don’t like change, but this wasn’t just a simple change. It’s a change that there is nothing I can do about; nothing I can say to my doctors will make them clear me to play soccer again. I want to say that I have accepted that I will never play soccer again, but it still hurts every time I hear people talking about it. Every time somebody brings up a game, a tournament, or even practice, it hurts to think that I’m missing out on something- not by choice but instead by force.

It is hard to explain to people what Post-Concussion Syndrome is. Some people like to claim it as “faking”, “wanting attention”, or even “excuses for being lazy”. Nobody understands the pain that PCS sufferers go through everyday. It isn’t “just a concussion”; it is something that changes lives. I can’t begin to tell you how frustrating it is when people ask me, “You’re still concussed?!”

So much for not wanting to talk about it; I always just nod my head “yes” and walk away. I hate talking about my PCS to people who don’t get it. Why would anybody do something like this for attention? PCS doesn’t just affect me; it affects my family, friends, teachers, coaches, and administrators.

Some say we are put in situations like this to make us stronger, I truly believe that. This concussion has taught me that I need to make the most of every second that I feel well. It has taught me that I need to persevere and overcome any obstacle I face. It has taught me that everything could always be worse and that I have to be thankful that I’m still alive. I can’t take each and every day for granted. I’ve got to focus on the positives of every situation. I learn new things every day from my PCS that some people don’t learn until much later in life.

I see that as a positive in this whole ugly situation. This concussion has changed my life- and it is hard. But, because of those things, I wouldn’t take back a second of it.