Tag Archives: PCS

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

Multiple Concussion Sufferer From PA Details Her Experiences

{ Editor’s note: Isabella’s experience highlights the most common (and nerve-wracking) bullet point that many of us have learned as multiple concussion sufferers: That it takes virtually no effort at all to re-injure yourself once you get the ball rolling with concussions. We know that the effects of concussions are cumulative and that each one increases the likelihood of the next one- even from a slight bump. Living under that sort of cloud day to day is stressful and very difficult; especially, as you are working hard to recover from current symptoms.   – Jay }

By Isabella Cantafio

isabellaI never knew what a concussion was until I got my first one in a soccer game in 6th grade. I headed the ball in the air with another player and fell back whipping my head off the ground. I remember feeling in a blur and sat out for about 5 minutes before returning into play. By the end of the game my head felt like someone was hitting it with a hammer and I was on a merry go round ride. My next concussion came in 8th grade from hitting my head off the gymnasium floor leaving me unconscious for 2 minutes and sending me to the hospital.

Nearing the end of my freshman year, I was in a water park accident that caused a concussion and forced me to end my 9th grade year early.

A few weeks after the accident (never being officially cleared by IMPACT test) I was playing soccer with some friends and got kicked in the head causing another concussion.

Over the summer until the start of my sophomore year I had intermittent headaches, got easily dizzy and overall didn’t feel right. I didn’t think it was from the concussion but when school started I found it hard to concentrate, my grades started slipping and the headaches just got worse.

Two months into the school year, I passed out, hitting my head and was unconscious for almost a half an hour spending 3 days in the hospital under observation for seizure activity. After the accident, I had double/ blurry vision for several months, fainting spells, problems in school, and severe migraines that seemed to never leave.

Doing vision and vestibular therapy for 5 months things started to improve until fooling around with some friends I got pushed back jarring my head causing many of my symptoms to come roaring back.

I was forced to end my sophomore year early bed bound for 5 months unable to watch tv, text or do anything that would stimulate my brain. It was horrible to say the least.

Playing basketball my junior year I got hit in the head causing another concussion.

A few months after that, I got a knee to the head and blacked out for several seconds. Not much force was needed to knock me out at this point. The summer leading to my senior year I had moderate improvements in my post-concussion symptoms and was really looking forward to senior year and looking into college.

Just when everything started improving, things spiraled downward quickly, and I got back to back concussions, 2 weeks apart. The latter of the two was a car accident that caused a neck injury and more concussion problems. I’ve been in and out of the hospital trying to get the migraines under control, doing more vision and vestibular therapy and cognitive exercises to help with short term memory problems and concentration issues, sleeping problems and mood swings.

The one thing out of my experience I have learned is to never take anything for granted. You may think you are “invincible” and you can play through any pain. But with concussions it is your brain, something you can’t replace, you need to take care of it.

No game is worth years or possibly a lifetime of problems. I can never play sports again, I still have many problems from my injuries and my college plans are on hold for now. But sometimes in life the road that everyone else is taking, isn’t the road you are supposed to be on.

Take every day one day at a time and never give up!

 

BMX Racer From California Speaks Out on the Effect Concussion Has Had on Her Life

{ Editor’s note: I first became aware of Sara the night that she crashed racing in Oregon. I got a message from a concerned mutual friend (a Nationally #1 Ranked BMX Racing mutual friend, at that) saying, “Hey, she popped up online and doesn’t sound real good- you should try to get in touch with her right away and encourage her to get checked out/rest/etc.” –  which I did right away. Despite that, Sara is now writing her story for us and has unfortunately become “one of us”.  – Jay }

By Sara Dooley

saraApril 14, 2013. This is the date I will always remember, my life now separated out to “before” and “after.”  If you lose a limb, the disability is tangible to the general population but when it is internal, people chose not to believe. It was the Sunday main even at the Great Northwest Nationals. I had gate 4, my favorite, and knew I had it in the bag to podium.  The gate dropped and off we went, Girls 36-40 Cruiser class. The riders to my left and right were trying to sandwich me in, and I was not giving up my line. I never saw the rider from the outside cut over to the inside until it was too late. I hit her back tire as she passed and off I went, head first into the dirt. About 2-3 hours later is when my memory came back. While I did not pass out, I did have amnesia. My memory came back when the arena was clear and the vendors were taking down their areas. No matter how hard I try, that time is not coming back to me.

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Sara: Out Front in Oregon

After much pushing and prodding from my friends, I went to the Emergency Room that night. It seems I had broken my helmet where I hit and they were concerned there could be bleeding on the brain. The Doctor ordered a brain scan and thankfully there was no bleeding. They referred me to see my Doctor as soon as I made it back home and explained the severity of a concussion.The next morning I made the 12 hour drive home. Little did I know that my life had transformed.

After seeing my primary Doctor I was put in “isolation” as I call it for a week. No work, phone, TV,  lights, loud noises, or reading-just sleep. I thought this would be hard, but with my head hurting so bad, I wasn’t complaining. I literally slept for a week and then went back to work. This is when I realized something wasn’t right. I had a hard time concentrating, jobs that I could breeze through prior, were now difficult. The more I thought of how to process something, the more my head hurt. I still had a black eye and part of my head was bruised so people understood. Also, the injury was “new” so it was understandable and they accommodated the injured me.

As time went by and the bruising healed, my productivity reached the normal level, my personality came back (for the most part) people expected me to be back 100%. What they didn’t/don’t understand is I am not. It has been almost 4 months since my accident. I have to sleep more than most. Everything I do-no matter how simple, tires me out. Most just a little, but sometimes it takes me a week or more to recover. My brain is fried and sleep is the way it heals. It is like being drugged, no caffeine or anything will keep me from having to sleep. People don’t understand that sometime just a day at work wears me out, or spending the day at the track. Simple things that now leave me needing a day worth of sleep to get back to the new normal. My body can no longer regulate heat like it should. I have to use the air conditioning or drink gallons of ice water if I am going to be in higher temperatures. I have a hard time concentrating. I forget words and how to do things I have always known how to do. I have what I call “the wall” when I am trying to explain something. I can see it-and then the wall comes up and I cannot put it into words. The ability is just not there anymore. If I am tired I slur my words, or have a hard time pronouncing them. I can’t handle bright or flashing lights, they are a circuit overload and short out my brain and stop the ability to think in a logical way. I can’t track fast movement, like in action movies. If the music is too loud, it makes my head hurt. I used to listen to my headphones daily at work, but now I have a hard time listening to music and working at the same time. It feels as though it is too much for my brain to process at once. While these all may seem minor issues, they were not how I was before the accident, and people don’t understand there is a valid reason I cant explain something, can’t remember how to do something simple.

In response to my new shortcomings, people sigh, they roll their eyes, they tell me to knock it off. I’m to the point where I don’t explain anymore, I just apologize-for not being the person I was. This is never something someone should have to do. I find I don’t go out much, beyond the obvious of loud music and bright lights I just don’t want to have to explain myself or why I need to go home early because it was too much. I avoid conversations because I know I am lousy at participating if they become detailed. It has changed my life and trying to accept that, and learn how to live with the changes is hard. Every time I go to the Doctors they move my recovery date. It started out as 1-2 months, then 2-3, and now 6-12. They say what hasn’t come back or healed by the 12 month mark is most likely going to be permanent. They want me to accept this and be prepared for it. Every day I think of what might stay and what may heal-which I think I can live with more than others. I wish I didn’t have to think this way. I wish I could express myself and gain understanding from others, not impatience. But again, I look normal…so how can anything be wrong?

 

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

CT Lacrosse Player’s Four Year Journey Through Concussion

{ Editor’s note: I’m excited to include a “success story” here on The Knockout Project, as most of the time I’m hearing from people during what are some of the worst moments of their lives. The attached story features Marianna Consiglio’s battle with post-concussion symptoms. It was written just before Marianna and her parents agreed to a revolutionary surgery performed by Dr Ivica Ducic  to ease her suffering- a surgery that, by all accounts, has been very successful. The link included below is to a recent ABC News story that featured Marianna and detailed her surgery experience.
You can take these two pieces as a “before and after”, if you will.

http://abcnews.go.com/Health/doctors-surgery-relieve-lingering-concussion-pain/story?id=19095339

Once things settle down for her, I think we can look for Marianna to write her story here from start to finish. – Jay }

Marianna’s Story

By Erin Leo

mariannaFour years ago, if you had asked Marianna Consiglio what she wanted to be when she grew up, she would have said she wanted to be a teacher.

“I thought it would be fun to be in charge. I was a little bossy when I was younger,” she says, laughing as she recalls her earlier desired profession.

However, if you were to ask her now, the sixteen-year-old would firmly tell you she wants to be a doctor with a concentration in sports medicine, something she never would have considered before her injury.

Nearly four years ago in April of 2009, Marianna stepped out onto the field to play goalie in a youth lacrosse game. Halfway through the game, after already making half a dozen saves, Marianna stepped up to block yet another shot from a girl less than five feet away from her.

She blocked the shot; but it came with a price.

The loud crack as the shot rebounded off Marianna’s helmet made the whole crowd cringe. The force of the ball caused her head to snap back against her helmet, doubling the impact of the hit. Within seconds she was dizzy and had a throbbing headache, but she continued with the game. Afterwards, however, she knew something was very wrong.

“By the time I had gotten home, I was throwing up and could barely see,” she said.

Her mother rushed her to the emergency room where she was diagnosed with a concussion, not an uncommon injury in sports.

“At first I didn’t think it was that big a deal—a lot of kids get concussions and recover without significant issues,” said Laura Consiglio, Marianna’s mother.

However, three months and three different neurologists later, the symptoms from the concussion, specifically the debilitating headaches, had not subsided, and she was referred to Boston Children’s Hospital Sports Injury and Concussion Clinic. An ImPACT test revealed significant cognitive impairment in her visual and verbal memory scores.

“The doctor at Boston told us that the younger the athlete, the longer it generally takes for them to recover from concussions,” recalled Mrs. Consiglio. “He prepared us that it might take up to 12 weeks for her to fully recover, which I remember thinking no way!”

As it turned out, Marianna and her mother are now wishing it had really only taken 12 weeks.

For a year, doctors monitored her cognitive function and prescribed several different medications intended to ease the headaches. By March 2010, she was deemed recovered cognitively, but the headaches had yet to go away. Marianna was then diagnosed with Chronic Daily Migraine. Two years later in 2012, she has since seen seven different neurologists, tried five different naturopathic remedies, and been on countless medications. Still, she experiences near constant headaches and has not gone more than six days without a headache since her initial injury four years ago.

Now, the daily migraines she experiences turn everyday into a battle.

“The hardest part about having the headaches for so long is always missing stuff with my friends and family, and always feeling like I have to explain it to them,” she says.

As a junior in the middle of her high school experience, not being able to hang out with her friends or attend their birthday parties can be hard. It’s a luxury most other students take for granted.

“Although she has occasionally been out to the mall with friends and a couple of Sweet Sixteen’s, she has also missed a lot of social things that go on,” says Mrs. Consiglio. “She has turned some invitations down or left parties early; she doesn’t get to see her friends as much as most others her age.”

Her condition has impacted her family as well. Having gone through all of her ups and downs with her, they hate seeing her in so much pain and are frustrated at the lack of a cure or aid so far.

“It is so frustrating to see her in pain and not be able to do anything to help her,” says her mom. “Or more like, everything I do to try and help her is futile.”

Her older brother, TJ Consiglio, feels the same way.

“Seeing her in pain every day and having trouble helping her get through it is the hardest part,” he says. “You just feel helpless, and that’s the hardest thing to cope with and overcome for all of us.”

However, the biggest obstacle for Marianna and her family so far is school. Though she has a 504, a medical form that allows her to miss school and assignments without consequences, she struggles daily with make-up work and dealing with teachers who don’t understand her condition. She has not been able to attend a full month of school since her injury four years ago.

“I’ve had to come up with totally different school strategies,” she says. “I used to procrastinate to the last minute to start and finish my assignments, but now I know I have to do them right away when I feel good because I don’t know when the next headache is going to come on and prevent me from doing it.”

She goes to a local tutor regularly and has had to finish classes over the summer to receive credit for them. The school has also rearranged her schedule so that she has a free study the first and last period of the day in case she has to come in late or leave early.

“She gets very stressed out about missing and late assignments,” says Mrs. Consiglio. “She is determined to do well and wants her grades to reflect her true ability.”

Despite the many challenges, Marianna has been able to keep up in school and has been able to complete all of her requirements, even if they are just handed in a little later than usual.

“She always has a ton of make-up work, even over the holidays and the summer,” says her brother, TJ. “But she works so hard and always manages to get it done.”

Even more impressive, is the fact that this year she was inducted into the National Honor Society in her high school. NHS requires all of their inductees to have a cumulative GPA of 3.5 and maintain it throughout the rest of their high school career, a feat many normal students cannot achieve, proving just how hard Marianna has worked to continue doing well in school.

After all, she needs to keep up her grades if she wants to pursue her career path of becoming a doctor, and following her dream to help others with similar conditions.

“I’ve missed a lot of school, but I also know that many people wouldn’t be able to keep up their grades like I have, so I am even more determined to become a doctor in sports medicine,” she says. “I know how bad athletes want to get back on the field.”

Perhaps most impressive of all, however, is that despite the amount of pain she is in daily, she doesn’t let it dampen her spirit, and does everything she can not to let it stop her from being a normal kid. She also credits her family, for always being there for her.

“Each one of my family members are my biggest support system,” she explains. “I love them all and couldn’t do it without them.”

Her family continues to hope for a better tomorrow right by her side.

“I am so proud of her determination,” says her mom. “But she is sick of being sick, and I keep hoping that tomorrow will be better for her. I promised her we would not stop until we found a doctor to cure these headaches.”

Even with the many set-backs she has encountered, Marianna has always maintained a positive outlook and believes that she would not be the person who she is today had she not been injured so long ago.

“It has certainly taught me some of my most important lessons in life,” Marianna reflects. “I’ve missed out on a lot, but I’ve also come to realize who my true friends are and what really matters to me.”

The quote she now sets her life by and draws strength from is the one she thinks best describes her whole situation.

“It’s not about waiting for the storm to pass, it’s about learning how to dance in the rain.”

Southcoast MA HS Senior Soccer Player Describes Her Experiences With Concussion

By Lindsey Santos

santosOn October 26th, 2010, I received my first concussion. During a competitive soccer game against one of our conference teams, I was jumping up for a header, pulled down, and then deliberately kicked in back of the head twice, blocking the third kick with my hand. I stood back up on my feet and knew something was wrong. I tried to “shake it off” as any other athlete is taught to do, but when I started throwing up, I jogged myself off the field. When I told my parents I had a headache later on when we arrived back home, they took me into the emergency room to get checked out. During that visit I was diagnosed with a concussion. Already knowing somewhat about concussions, I figured it would be a “normal” two weeks of headaches. Little did I know that two weeks would turn into three months.

I had headaches every day, and I constantly felt tired and confused. My goals had to be set aside to take care of my health. Not being able to go to school caused me to fall behind my peers in the classroom and on the field. After having my concussion for about four weeks, my doctor recommended I go to see a Sports Medicine Specialist at Boston Children’s Hospital. There, I took my first Impact Test. Even though I did well on it, my symptoms clearly showed that I still had a concussion. I followed up every month with him basically just asking questions about how I felt and keeping track of the symptoms. Finally being cleared back to sports in January of 2011, I returned to play basketball for my high school.

After only being cleared fully for a week and half, I received my second concussion. Someone set a pick on me and just completely elbowed me in the process. I immediately knew that I had a concussion because when I got up, I was dizzy and my vision was blurred. But, I stayed in the game because I didn’t want to accept the fact that it had happened. My coach took me out of the game because I was clearly “not right”. The trainer checked me out and held me from going back into the game. Waking up the next morning with a severe headache forced another trip back up to Boston Children’s Hospital.

It was just the same routine as last time- as if I was never cleared. This time the specialist advised that I come up with some sort of agreement with my teachers for help in the subjects that I wasn’t doing well in. My school principal developed a 504 plan that provided me with accommodations to get extra time to take tests and hand in projects. Some of my teachers weren’t aware of my condition though and some major assignments were counted against me. I felt like I didn’t have any control over my life as if a carpet was ripped out from under me. I started to write and draw to help me through my PCS (Post Concussive Syndrome) recovery. During all of this I was also losing my friends. When they would be out having fun, I was stuck at home with a headache crying myself to sleep. They would get mad when I told them I was going to stay home because I didn’t feel well. They started to believe I was faking this concussion to get away with things, like quarterlies, homework, and get-togethers.

After another three months had passed, I was cleared for contact sports again. I was feeling good and healthy, even with two concussions under my belt. Though things felt altered, I was learning to cope and accept it. I could not let my two concussions defeat me any longer. I had to face these obstacles head on and regain control of the things that mattered most in my life. Even though I am still dealing with headaches three years later and break down every once in awhile, I strive to make a difference. I introduced the Impact Test to my school and even though the athletes hate taking them, I know it can make a difference for the better. I also help other students in school who have a concussion. I guide them, and I’m most importantly a friend to them. I don’t want anyone to go through what I did. Going through these challenges has certainly had a large impact on my life. They have prepared me for other bumps in the road that I will face as I live the rest of my life.

“Healing Heads”- Massachusetts HS Junior on Her Concussion Journey

{ Editor’s Note: At the ripe old age of 17, Madeline Uretsky has become a prominent voice in concussion education. She was the subject of a Boston Globe feature story on concussion in January of 2013. Her story has also been highlighted by the Brain Injury Association of Massachusetts, The Salem (MA) News, and a number of concussion-centric websites and blogs. She has spoken publicly on concussion, most recently at the Boston Acquired Brain Injury Support (BABIS) Walk. Madeline is truly a concussion education warrior after our own hearts, and she is an important voice. – Jay}

“Healing Heads”

mad1My name is Madeline Uretsky, and I am a junior at Bishop Fenwick High School in Peabody, MA. What used to be known as “getting your bell rung”, and being told to just “shake it off”, are no longer accepted ways of dealing with concussions.  Thanks to modern research, we know now that concussions are in fact, brain injuries, and must be dealt with as such. They are to be taken seriously, regardless of the severity, because the short term and long term effects can be devastating. Ignoring the symptoms and the mistreatment of them can have lasting effects to the brain, as we have learned from the many NFL players now suffering from the many concussions they sustained, but ignored, while playing. Any subsequent hit to the head before the prior concussion has healed can have profound effects on the brain as I have learned. I am just one of the many thousands of people who have suffered a severe concussion, and whose life has been forever changed by it. You never think it’s going to happen to you.

On October 11, 2011, while playing in my soccer game, I was tripped from behind while sprinting for the ball, fell on my forehead, snapped my neck back, and fell and hit my forehead again in the same place in a matter of seconds. I knew something was wrong immediately, but I had no idea how serious it would be. My symptoms did not become apparent until about 48 hours later. I could not sit up, tolerate any light at all, I was tired, and had an excruciating headache. It has now been a year and seven months since the moment of impact.

I spent the first 3 months of my concussion lying in bed at home, in a dark room, and on complete brain rest. This brain rest meant that I could not watch TV, use a computer, phone, draw, text, read anything, or do any sort of homework or exercise. In other words, I could just sleep, lie in bed, and not go to school.

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At this time, my symptoms were numerous and very high on the symptoms scale at the doctor. I had severe headaches as well as up to 165 very sharp pains all over my head every day. I also had severe whiplash, disorientation, memory loss, extreme fatigue, dizziness, balance problems, trouble following a conversation, ringing in my ears, and I could not tolerate any bright colors, light, or noise of any kind. My sleep at night was erratic and filled with nightmares. You would never know this by just looking at someone with a concussion because they do not have a cast like a broken bone. The brain is still injured but on the outside you look fine.

I went to my pediatrician weekly, and my neurosurgeon monthly, for a symptom evaluation. On a scale of 0-6, I had all 5’s and 6’s during those three months of brain rest; I could not believe how awful I felt. I started going weekly to a massage therapist who practices a type of acupressure that helps brain injured patients. I liked going because it was a way to relax myself, even though it was painful. I continue to go on an as needed basis, and also do many other kinds of alternative therapies that have been helpful such as chiropractic, herbs, speech therapy, balance therapy, eye coordination exercises, and others.

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As these weeks turned into months, it became apparent that there was no end in sight for me. I was isolated from my friends and my school, yet I felt so awful that I accepted that there was just nothing I could do about it, except rest, and wait it out. I had visitors, on a limited basis, but I did not even feel well enough to enjoy myself. I was unable to engage in any kind of conversation, and I would randomly fall asleep. There were times that I could not even remember that I had visitors.

I missed all but five weeks of my sophomore year and I am still not cleared for physical activity other than walking. I did catch up with my schoolwork over the summer of 2012, and now I am on a full schedule at school but with accommodations such as extended time on tests. I took my SAT test without accommodations and that was a challenge. I did some extra preparations to help myself concentrate and have the energy to last the entire test. Overall, it went well and I always wonder how I would have felt during the test if I had not had a concussion. Recently, I also had a setback that kept me out of school for a week after a re-injury to my neck from a visit to the physical therapist. What makes my concussion so severe is that I still have all of my symptoms over a year and a half later, just to a lesser degree. In addition, I have learning disabilities now that I had never had before. Focusing, processing new information, multi-tasking, and comprehending orally are some of them. I am doing much better than I was, but I still have a ways to go. I am hoping to one-day wake up symptom-free.

When you sustain a serious brain injury, your life, and the lives of those around you, are greatly impacted. What you once knew as “normal” no longer exists, things that you could count on for yourself no longer exist, and what you have to do to achieve, and accept, a “new normal”, is a difficult process, both emotionally and physically. I could no longer do any form of physical activity at all, yet I was accustomed to playing sports every day of my life. Before my concussion, I was a very involved and active student – my freshman year, I played soccer, hockey, and winter and spring track.

I decided early on in my recovery that I was going to do whatever the doctors told me, and I was definitely NOT going to let this concussion get the best of me. It’s not who I was before my injury, so I wasn’t going to allow myself to become that person. I was open to any kind of treatment that could help me. As I started to feel a bit better, I began taking baby steps to regain my life. I started to use my computer to reach out to others, as well as to learn more about my brain injury.

Along the way, I decided that there must be other teenagers out there suffering as I was, and who perhaps don’t have the kind of support that I have, so that became my mission – to help them. Life as a teenager is difficult enough, so just imagine being a teenager with up to 165 headaches per day, living in a constant state of fogginess, having memory loss, unable to carry on a conversation without physical pain, sensitivity to light and noise, and generally not being able to live the life I once had.

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Speaking at the Boston Acquired Brain Injury Support Group Walk in Jamaica Plain, October 2012

Returning to school as a student with a brain injury is a very scary proposition. Will people look at me funny? Will they ask me a lot of questions? Will they think I’m faking? – after all, I look fine. These were the many questions that I had before I returned.

My school was so supportive with my accommodations that I decided to write a chapter for a book about concussions in sports, and I have been a regular blogger about various brain injury topics, for several websites. I was the speaker at the 10th annual Brain Injury Walk in Boston in October, and the Pediatric Brain Injury Conference in November. I was featured in Bay State Parenting magazine, the Salem Evening News, and the Boston Globe as well. I will continue my crusade for concussion awareness, because I feel that this has happened to me for a reason, and that is my mission to help others.

As long and difficult as my road to recovery has been, it has also been extremely rewarding. I have been able to mentor, counsel and befriend many other kids with concussions, and this has made me feel so much better. The most important advice I can give is to stay positive because things improve over time. Brain injuries are a work in progress, there may not be a change on a daily basis, but improvement will be seen. Just because life is different than it used to be, it doesn’t mean it isn’t as great – you just have to find a way to make it as great, even if you have to do it differently.

 

WA HS Sophomore Lacrosse Player Reflects on the Physical and Emotional Damage of Post Concussion Syndrome

By Kait Dawson

kaitIf you were to look at me, you wouldn’t think anything was wrong. On the outside, I look like a normal, happy, healthy, teenage girl. But there is so much more going on inside my head than it seems. I am a completely different person than I was before. I have pounding headaches everyday, and I’m not able to remember something I was told five minutes ago, or a movie I’ve seen a dozen times. I have emotional outbursts. I’m constantly both mentally and physically exhausted. I’m losing friends who don’t understand why I am the way I am, and I sometimes feel hopeless and depressed. I struggle with insomnia and being so behind in school that I have to repeat classes. It is a seemingly never-ending bad dream that I can’t wake up from. I never thought much of the word “concussed” before it was relevant to me. But, that word is now my life.

I am now a completely different person than I was before my accident. I was a 4.0 student. I challenged myself daily and took school very seriously. I was a year ahead most students in math, science, and Spanish. I also played lacrosse five nights a week. Lacrosse was a huge part of my life. Pretty much all my friends were on the team. I also play basketball and tennis, but lacrosse was the love of my life. This contrasts greatly to how I am now, taking minimal classes and not even being allowed near a lacrosse ball.

The one thing I do remember very clearly is that day. It was a warm, sunny day in April, the 11th to be exact, and I was wearing my favorite shirt. In PE that day we were playing basketball and I was on a team with three of my closest friends. We won all of our games, so we made it to the championship, which happened to be against an all boys team. It was a rough, violent game that included a lot of fouling. There were two minutes left and we were tied. The only thing on my mind was winning. If I had known that this one game would impact the rest of my life, I might have been less competitive. A boy on the other team dropped the ball at the top of the key and I saw my opportunity to score. I quickly lunged forward. Little did I know, a boy on the other team also decided to lunge for the ball too. Our heads hit with an audible thud and I wobbled backwards in a daze. The gym spun around me, and my ears rang loudly. My head felt like it was going to explode from throbbing pain. I quickly snapped out of it and picked up the ball and scored a basket. We won that game, but my life had taken a dramatic turn for the worse.

When I got home, I told my mom about what happened and that my head was hurting. She checked to make sure my pupils were dilated evenly and made sure I wasn’t feeling nauseous. That was all she knew about concussions. We both thought nothing of what was happening. I bombed a biology test the next day. Biology was my best and favorite subject and I couldn’t understand why I did so poorly. I still didn’t realize what was going on. That night, I played a lacrosse game. I was disoriented the whole game and kept losing track of who had the ball. At this point, my head was still pounding. I was also super sensitive to light and noise. I will regret going to school the next day for the rest of my life.

I was planning on staying home because of my headache, but it was the Friday before spring break and I had two tests that day, one in English and one in Geometry. That day in PE, we were playing ultimate Frisbee. Being my usual competitive self, I was playing too roughly. I don’t remember anything about playing except for the moment I got hit. It was like one of those slow motion moments in a movie. I saw an opportunity and jumped in front of a girl on the other team that was about to catch a pass from a teammate. I swatted the Frisbee away from her and heard it hit the ground. This girl was obviously surprised about what happened and wasn’t expecting it at all. She flailed her arms and her left elbow made contact with my right temple. It was the same spot that the boy’s head hit in basketball a few days prior. I immediately collapsed on the field. I wasn’t unconscious, but I was really out of it. I got up slowly and tried to process what had happened. The PE teacher asked about what happened and I explained. After hearing that I was hit a few days ago, she tugged me off the field. I was sent straight to the nurse’s office and then straight to the doctor’s office from there. I was told that I had suffered a concussion.

My first thought was, “when can I play lacrosse again?” My pediatrician told me I would be completely better by next week. I canceled my travel plans for spring break and spent the whole week in bed in a dark room. I don’t remember that week at all except that I slept a lot. When it was the next week and I didn’t feel better, I was discouraged. But, my doctor assured me that it would only be two more weeks. She said that sometimes it takes a little longer. After each benchmark passed and I had no improvement, I began to lose hope. It was now the summer break and I wasn’t better at all. I spent the whole summer in bed. I left my house maybe five times at most and saw my friends only once. It was a really dark time for me. I was so confused. Why wasn’t my head getting any better?

Not much changed for the next few months. I had full testing done by a neuropsychologist and they couldn’t find anything wrong with me. It became very clear that full time school wasn’t an option so I dropped several classes and got a 504 plan. I hated the idea of this. I felt weak, like I couldn’t handle it. I wanted nothing more than to go back in time and stop myself from getting hurt. I had missed out on playing in the state championships with my lacrosse team, going to the Young Life camp that my friends and I had been talking about since 6th grade and everything else that mattered to me. I was still in a very dark place.

From then on, things didn’t get much better. I can’t tell you how many times I’ve wished I could go back to that day and change things. But, I can’t. I’m stuck with debilitating headaches, anxiety attacks, and just coping in general. I’m stuck with being this whole new person that I don’t recognize. I’m stuck with Post Concussive Syndrome for the time being and there’s nothing I can do about it. The only thing left to do is to be positive and pray that my brain will heal soon. I’ve had to miss out on so many opportunities over the last year because of it and I’ve struggled with periods of depression. But recently, I have come to accept it. I’ve learned that there’s no point in getting upset about something I can’t change. I could have PCS for another month, or another year. There’s no way to know. But the thing I have learned is to just “let it be”. I’ve finally come to terms with it. I no longer get stressed about small things like I used to. It’s not the road I chose, but it’s the one I’ve been dealt.

I don’t know when I’ll be able to play lacrosse again. I pray every night that my concussion will go away so that things can get back to normal and I can play the game I love so much. The one thing I do know for sure is that, when I do return to the lacrosse field, I will be wearing a helmet. I will be the only one on the field sporting such lovely headgear, but I don’t care. I will wear it proudly because I know that I am protecting my head.

Reality of Post Concussion Syndrome Driven Home By Web Search Statistics

By Jay Fraga

As the founder of this site, I take a keen interest in trying to figure out how people are getting here. Many arrive at The Knockout Project because of an article or post that has been shared via social media. Some people get here by accident; many after their own accident while they search for answers in an attempt to get some relief.  As someone who still suffers from some rather lousy post concussion symptoms daily, I can’t help but to read our site’s internal statistics and envision the suffering on the other end when a person types a phrase or question into a search engine that ultimately leads them here.

I’d like to share with you some of the searches that have led people to our site within the last four months. Some of the search queries offer poignant insight into the suffering that can exist post-concussion. For me, these queries are often hard to read. I’ve felt many of these symptoms and know how bad they can be physically and mentally. In that particular light, they’re not just search queries: they’re my life. They’re the lives of other athletes that I know. And now they are an unfortunate part of someone else’s life; someone seeing our site for the first time via a search engine query.

  • the knockout project
  • post concussion syndrome
  • the knockout project concussion
  • knockout project
  • theknockoutproject.org
  • raising a child with post concussion syndrome
  • can post concussion syndrome last forever?
  • post concussion college teen
  • post concussion light sensitivity and computer screens
  • how to explain my post concussion syndrome
  • nobody understands my concussion
  • how do i explain post concussion syndrome to people
  • looking backward when you have a concussion
  • post concussion syndrome changed my life
  • post concussion syndrome even years later some people can’t focus
  • why do we forget what happens concussion
  • my boyfriend has post concussion syndrome
  • my post concussion story
  • why are memories forgotten during concussion
  • multiple concussions data tables
  • concussion can’t bend head down
  • stories about second impact syndrome
  • how to get my taste back after concussion
  • sara birkholz
  • theknockoutproject.com
  • concussion project
  • kevin saum
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  • knockout project wordpress
  • concussion emergency they gave me an iv
  • concussion mission statements
  • kevin saum concussion article rutgers
  • knockout project blog
  • post-concussion syndrome soccer
  • sara birkholz rochester mn images
  • cuncussion from bouncing on mountain bike
  • amateurism perpetuates
  • vivid dreams after concussion
  • post concussive syndrome in adolescents
  • kevin saum football injury
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  • duluth mn neurologists who specialize in concussions
  • racing drivers head whipped forward after crash pain shooting up head
  • can someone help me write an impact statement after a car accident that cause whiplash
  • post concussion doctors in mineapolis
  • second impact syndrome survior
  • bmx biking project
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  • 12 yr old with multiple concussions
  • concussion helps me hang on some people claim
  • i crashed on my mountain bike and i got unconcious what possible the cause
  • jay fraga bmx racer
  • multiple concussion syndrome
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  • bradley multiple concussion
  • concussions in sports paraphrases
  • athlete and concussions story
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  • multiple soccer concussion stories
  • theknockoutproject
  • concussion awareness programs rochester
  • second impact syndrome
  • need more toughtness to ride my bike
  • knockoutproject.org
  • relapse of concussions symptoms
  • i didn’t have a headache until the day after i hit my head, could i have a concussion
  • century projects april 2013
  • post concussion syndrome for time on act
  • words of wisdom for people with concussions
  • sara birkholz 
  • sara birkholz 
  • i have a concussion now what? 
  • can a concussion cause you to see upside down
  • post concussion syndrome athletes stories
  • post concussion dizziness when bending down
  • most common freak accidents
  • mental toughness in education project
  • knockout i don’t remember
  • no screen time for post concussion
  • teen who misses freshman year in h.s. because of concussion
  • post concussion syndrome in football
  • i need help with my post concussion symptoms
  • i ‘ m fine coach put me back in the game
  • can a concussion change your belief
  • bmx massachusetts
  • seeing my daughter lying on a backboard in the er
  • kimberly mcnicholl ny high school east
  • is a knockout a concussion
  • nausea when reading post concussion
  • most interesting bmx speech
  • vivid dreams concussion
  • had a concussion can’t look at screen
  • can i play soccer if i have post concussion syndrome
  • why is whiplash a major part of concussions
  • concussions mission statement
  • alicia jentzen
  • alicia jensen
  • senior project concussions
  • life course for someone with cte concussions
  • do concussions force bad throws
  • multiple concussions
  • i got my fourth concussion
  • when did society become aware of football concussions
  • projects on concussions
  • music to go along with a concussion project
  • no.14,mcnichols
  • are amusement rides dangerous for those with a recent concussion
  • second-impact syndrome story
  • why is using a cell phone post concussion
  • amantadine concussion
  • trends of how more teens are going to get tested for concussions
  • reboundibility in mental toughness
  • nauseous after second impact
  • nausea from flourescent lights post concussion
  • kevin saum nj

Concussions are no joke. They entail much more than just an abstract sounding word. This list only scratches the surface of that reality.

An Athlete’s Story of Re-ordered Expectations in The Wake of Multiple Concussions

By Kate Parhiala

kateshotIn 2010, the UCI Mountain Bike World Cup announced that it would have an event in the United States, at Windham Mountain in New York. This same year was my first as a professional mountain bike racer and I had the opportunity to participate in the four-cross event at this race. Four-cross is a downhill event where four racers at a time go head-to-head down a track with flat and banked turns, jumps, rocks, drops, and whatever obstacle the course builder decides to throw in. In each round the top two racers move on and the third and fourth are eliminated. To determine groups everyone takes a timed seeding run.

containerdropSuccessfully navigating the jump where I ended up having problems later on.

I never got that far. Before the race there is an allotted time during which riders can take practice runs on the course. Everything about this course was huge, especially the jumps. I had been carefully inspecting and attempting the course bit by bit. By my third practice run I attempted to string the whole thing together. As I approached the big step-down jump I was much farther left than where I had been hitting it previously. There were two landings to this jump: I had been aiming for the closer one, same as in the other runs, but was carrying a bit more speed this time around. I ended up landing on the flat area between the close landing and the far one. All that I remember as I began to fall off the back of the bike was thinking “Wow, this is embarrassing.” About an hour later I woke up in an ambulance.

windham_crash

The big crash at Windham. The medics are trying to free my leg. I don’t remember any of this.

There is a considerable chunk of time that I don’t remember. I have been told that I was physically unconscious for about 30 seconds but mentally I was completely blacked out for at least an hour. The medics were asking me questions to check on my cognition. I knew my name and what my bib number was but couldn’t remember signing up for the race or how I had gotten there. Apparently my left foot had not come unclipped from the pedals and my left leg had become pinned between the rear wheel and the seat. The medics had to let the air out of the tire to extract my leg, which they thought was definitely broken. I was carted down the mountain and into ski patrol where they put an IV in and eventually an ambulance came to bring me to the trauma center in Albany, about an hour away. We were almost there when I finally came to, strapped to a backboard and very nauseous.

brokenhelmet

 My helmet after concussion #2. I should have bought a new one instead of just replacing the visor.

I remember very little of my stay in the emergency department at Albany Medical Center. I think they got me in right away for a brain scan and x-rays. Luckily no bleeding in the brain and only two badly sprained ankles. I don’t believe I was given any instructions on how to care for a concussion after I was discharged because I spent the next few days doing things I shouldn’t have been doing. With two more days booked at the World Cup, my boyfriend (now fiance) and I wanted to stick around and watch the races. I was hobbling around the mountain on my crutches in the bright sunlight with the loud crowds drinking the occasional beer.

jumpThe day after the crash – concussed and sore in front of the jump that took me out.

It took until going to work the Monday after for me to realize what a mess I was. I just remember sitting at my desk staring blankly at my computer not being able to think. It hurt to think. I couldn’t remember a lot of things that I had previously been working on. My speech was a little slurred and it was difficult to come up with words. By mid-day I finally told my boss that I had to go to the doctor. After taking the subway and the bus home I got in my car to drive to the doctor’s office. Very quickly I discovered that I could barely control the car. My reaction time was so delayed that I kept almost crashing every time a car was stopped in front of me. The doctor told me that I needed to take it easy for a while after a bad concussion and should take at least a week off from work. I left my car at my parents’ house so I wouldn’t try to drive it.

It took at least a month or two for me to start recovering from the most acute symptoms. It was such a relief when I could finally concentrate for most of a workday. I still have trouble remembering anything from that general timeframe. In addition, something strange happened with my memory: things got rearranged. Memories from 10 or 15 years ago were suddenly vivid like they had occurred yesterday while more recent events felt like the distant past. I began having extremely vivid dreams as well (more so than usual) and started remembering little things that were long forgotten. These strange memory issues are still affecting me today.

This was not my first concussion, it was my third. My first happened during a BMX race in 2003. I crashed going over the first jump and hit the left side of my head really hard. There was a bright flash of light and an immediate headache. This was described to me as a mild concussion and I did not notice any residual symptoms. My second concussion actually went undiagnosed. I didn’t realize that I had one. In July of 2010 I was at a downhill mountain bike race and crashed during practice. It was one of those crashes where I went over the bars and the first thing to hit the ground was my face because it happened way too fast to get my hands off the bars. My full-face motocross helmet actually dug some rocks out of the dirt as my head plowed through. I hit so hard that I felt like I should have blacked out. I was definitely out of it and a little confused but I chalked it up to being shaken by the crash. I didn’t think this was a concussion because there was no loss of consciousness and no flash of light. In retrospect it definitely was. I just did not feel right for weeks afterwards but I replaced the shattered visor on my helmet and was back in action the next weekend. This was only a little over a month before the big crash at Windham.

Fast-forward to the 2011 season: I ended up suffering a fourth minor concussion over the summer and a fifth in October, both practicing for downhill bike races (even with a new helmet). The cumulative effect of this, in addition to the memory changes that I still deal with, includes mood changes and migraine headaches. I became significantly depressed and anxious after having 4 concussions in 15 months. In addition I started getting migraine headaches so bad that I would throw up (luckily only a few times a month). Still, it was difficult for me to realize how all of this fit together but I finally decided that I needed help when none of it was improving during the 2012 season.

I began seeing a new doctor who referred me for neuro-psych evaluation. Most of the testing done was negative but a brain MRI actually revealed mild atrophy in the temporal and parietal lobes of my brain. It was strongly suggested that I quit anything that put me in significant risk of further head trauma because further injury could be devastating. This especially meant no more downhill and no more BMX. This was very difficult news for me. I had focused my life around these things for quite some time and it was hard to go from thinking about what World Cup races I wanted to enter the next season to selling my downhill bike and letting my sponsorships expire. I really miss that life but I had no other choice.

It’s a very strange feeling to have an injury that I can never recover from. Even though the symptoms are somewhat managed with medications the physical damage is irreparable. Even before the doctors advised that I stop racing downhill I knew that things weren’t quite right. It is always difficult to get back in the saddle after a bad injury because you’re shaken and anxious. But with time one can usually overcome this. Because I’ve injured the very part of me that controls those thoughts and emotions I was never able to recover my confidence in the two years before I finally quit. I was getting faster and developing better technique but becoming more and more scared and anxious. I know that before continuously landing on my head this wasn’t the case but it’s hard to remember what that felt like.

Since the brain scan results I’ve had to dial the excitement back a quite a bit. Being an adrenaline junkie causes my happiness and sanity to be dependent on doing active and exciting things. At this point I’ve tried to create a balance between acceptable risk and not being bored and miserable. I continue to alpine ski and still race (while wearing a great helmet, of course). While there is still risk, I have not suffered a head injury in the 26 years that I have been skiing (and I hope to continue this trend). On the biking side I have been doing more cross country mountain biking and have started racing cyclo-cross. In addition I am becoming more involved in mountain bike coaching. I still do easy jumps and drops but try to stick to a controlled environment and will not ride beyond my ability.

When it comes to mountain biking I firmly believe that fewer injuries of all types would be sustained if people sought professional instruction, specifically on bike handling, rather than the trial and error method. This is part of the reason I have become more involved with coaching. If a rider learns solid fundamental skills before attempting larger obstacles he or she will be able to more safely progress. Many riders, including myself, did not have this opportunity. To paraphrase my friend and fellow coach, former pro Karen Eagan, if you feel lucky that you just landed that drop DO NOT go bigger; Practice it again and again until you are completely comfortable and then you can progress to the next one. Mountain bike instruction has only recently become more widely available and is something that this sport has been severely lacking. Downhill racing can never be made completely safe, and it shouldn’t be (that’s part of the allure), but riders can at least be equipped with the skills to sufficiently tackle any course they are confronted with.

Having this experience has caused a significant change in mindset. I’ve become comfortable with backing down from certain challenges like drops or jumps if I don’t feel completely comfortable. I can always try another day when the conditions are right. Why go for it now? Is it really worth it? Some things I will probably never attempt and now I’m ok with that. I would rather be riding my bike and skiing for many more years than possibly risk it all because I couldn’t tell myself no. As written of world-renowned steep skier Andreas Fransson in a recent issue of Powder Magazine, “He is most proud of the runs he didn’t take, because backing off is harder than dropping in.”