Tag Archives: Concussions

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 }

image

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

Long Island HS Junior Speaks About Loss, and Perseverance in the Wake of PCS

By Kate Gaglias

kategThe saying “You will never know the value of a moment until it becomes a memory” is absolutely true. Many of us athletes take our sports for granted- The grueling practices, running laps for no reason, constant games and tournaments. But the truth is no matter how much we say we hate it we will always have the love for the sport. Until, unfortunately for some of us all of that can be taken away in an instant.

My name is Kate Gaglias, and I am a junior in High school in Long Island, New York. I’ve played soccer since I was four years old, beginning in an in-house league like every other toddler. I joined a travel team when I was eight called the Longwood Twisters (which I am still a part of today) and played on the junior high team, JV team, and in my sophomore year I became a member of our varsity team. But since a young age my life has been changed by concussions. I received my first concussion in 2007 by getting a ball slammed to the side of my head by one of my teammates at an indoor practice. I didn’t feel anything until I got home, and after telling my dad (an athletic trainer) and my mom (a physical therapist assistant), they checked out my symptoms (the normal dizziness, sensitivity to light, headaches) and they all added up to having a mild concussion. I was out of school for a week, and when my symptoms were gone I returned to school like a normal 5th grader. Continue reading

Peter Robinson, Father of Northern Ireland Teen Lost To Second Impact Syndrome in a Rugby Match, Speaks Out

benrobinson

Benjamin Peter Robinson

Born 29th May 1996 – Died 31st January 2011

By Peter Robinson

Ben, as he was to me, or Benjamin, as he liked to be called, was an A student who had a big broad smile and a wicked sense of humour. A very caring sensitive boy who hated confrontation, he was a mediator. Growing up, Ben loved ‘Harry Potter’ and ‘Lord of the Rings’, playing football and getting up to mischief. He was fanatical about Man Utd and visited Old Trafford and Wembley to see them play with his step father Steven. He would talk endlessly about who was the best player – Scholes, Ronaldo, Messi, Best, Pele. I brought him to see Messi play for Barcelona, it was a great day.

Ben has a sister Holly who lived at home with him. She was studying for her GCSE at the time. Holly continued to attend Carrickfergus Grammar and has shown great strength and courage, gaining all her GCSE and latterly all her A levels. She is now at College, she is sports mad including football and hockey although this gives me many sleepless nights, but at least she knows the dangers of concussion.

Ben has a younger brother Gregor and sister Isla who lives in Scotland with myself and my wife Carol. There is not a day that passes when Ben is not spoken about or watched on home DVD. When we told them what had happened to Ben, my son Gregor said, ‘can we not take the grass out of the ground and put it into Ben to make him grow better?’ If only it was that simple.

Ben also has 2 step sisters- Sian and Dana and they miss him terribly.

Ben was the most loyal child, he adored his mother Karen, they had a great relationship, since Ben’s death she has not been able to work again, any chance at getting her life back on track or a return to a form of normality seems a long way off.

On Saturday 29th January 2011, I knew that Ben was playing a Medallion match at School, I had spoken to him the previous day he was excited and nervous about the game. Late morning Holly telephoned Carol to say that Ben had been injured in the game and an ambulance was taking him to the Royal Victoria Hospital. At that time I thought, “okay its rugby”. I expected him to get injured at some time, a cut, a broken arm, ankle and my worst thought was a broken neck. I immediately booked flights across for myself and Carol, whilst waiting to travel I received telephone calls from Steven saying that Ben had a head injury and things were not looking good. Waiting on that flight was the longest wait of my life. I just wanted to be with my son.

On arrival at the RVH, I knew Ben had been taken to HDU. We spoke with the consultants and I could tell by their manner that things were not good. They told us that Ben had suffered severe head trauma and was highly unlikely to recover. They expected this sort of injury from a car accident and they said recovery would take a miracle. The staff at the HDU were fantastic. They attempted to reduce the swelling in Ben’s brain by using a new cooling method, but unfortunately this did not help. Seeing Ben lying there in the hospital bed and being unable to help him is a parent’s worst nightmare, I could only hold his hand and talk to him.

On the Monday, the consultants spoke to the family and explained that they believed Ben was ‘Brain Stem Dead’ and they carried out tests which confirmed this. We were approached by the Organ Donor team who made a request to the family that as Ben was so fit and healthy he could help others by donating his organs. As a family we agreed that Ben would want to help others. We wanted a miracle, but knew that Ben could be someone else’s miracle by donating. We know that Ben’s organs helped to save 5 others: a little girl Erin who was 6 months received part of his liver and her parents wrote some time later to tell the family that she was doing well. Knowing that Ben has helped others is somewhat comforting.

On the Monday night, Karen (Ben’s mum) and myself sat all night beside him, holding his hand. We did not want to leave him for a moment. Knowing that that night was the last night we could hold our son was devastating.

On Tuesday he was taken away for the organ donation operation. That was the last time I saw my son alive.

On Wednesday I identified my son at the mortuary.

Ben’s funeral was very difficult. The amount of people who came to pay respect to him was beyond comprehension. The school choir sang at the funeral and they were amazing, singing whilst tears ran freely down their little faces. The headmaster told tales from Ben’s friends, we had music, photos, and I laughed and cried. The school rugby team carried his coffin out of the church and through the streets of Carrickfergus.
Some months later we were contacted by the State Pathologist Jack Crane and he told the family that the findings in relation to Ben’s cause of death were ‘Second Impact Syndrome’. Having never heard this before, he explained that Ben had suffered several concussions during the one match.

As there was a video of the match, we watched this and saw many incidents where Ben had been injured and was seen on many occasions holding his head.

As a family, we wanted to find out what had happened, what had went wrong, and why did no one know about this syndrome? We wanted to make sure that this could not happen again.

We could not get Ben’s death certificate until the Coroner had carried out an inquest into his death. Unfortunately, as time passed, Ben’s team mates were still traumatised by his death and when they found out that it was mismanaged concussion they were devastated knowing that if they had been aware of the signs and symptoms of concussion they would have highlighted it.

The police investigation was long and painstaking and many mistakes were made. The family had to instruct a lawyer to assist with the investigation.

A chance meeting at Ben’s grave between Karen and a school friend led to valuable information coming to light: Ben had been injured several times during the match, all head injuries. He was treated for each one and allowed to play on. It was felt he was fit to play on as he had passed some checks. The video shows that this was not the case. He is seen prone on the ground, not moving on occasions and slow to get up. He is disorientated and is seen constantly holding his right side of his head. Some team mates came forward and made statements that Ben could not remember the score, even although it was a low scoring game. Other statements emerged saying that Ben was knocked out on an occasion.

The family had to have another funeral service when Ben’s Brain was returned to the family. Over the two and half years since his death we have had 2 funerals, 2 inquests and hours of heartache. Finally, on 4th September 2013, we got Ben’s death certificate stating that he had died of ‘Second Impact Syndrome’.

As a family we have a very simple message: we want concussion awareness introduced into the School curriculum. ‘It’s a life skill’

We want mandatory training for all coaches and referees. Players need to be aware, they need to look after each other – a buddy buddy system.

Sports organisations and Unions need to accept that concussion can be fatal. Don’t down play concussion.

Professionals Rugby players are sending out the wrong message in regard to return to play after a head injury.

My son left me a wonderful gift, that I was unaware of until his mum found it in his school jotter. He had written the following :

My Dad
I probably don’t think of him as much as I should,
but when I do I think of all the things
he has done for me.
I think of the endless drives up
to football and rugby matches, I think of all the camping trips,
events and treats organised for me and my
sister. I remember all the plane trips
and drives he’s had to take,
as he lives in Scotland,
just for me.
I know he will ring everyday
to check up on me and know how
I’m doing.
I know I can talk to him
about anything and everything and
that he will give me the right advice
even when I think I don’t need it.
And although he has gained some
weight over the years and he is a Man City fan
I still love him and he loves me.

Ben Robinson

Illinois HS Senior Hoops Player Speaks About Life After Concussion

By Mikaela Broling

securedownload-225x3001Everyone has a story: Enlightening stories, depressing stories and even stories of faith. Each and every one of them have deep feelings and memories attached to it. In reality, they are all different, whether it be how theirs started or ended. I have not always been so keen on sharing mine, but I have come to learn that it is a very important one, one that will make people think, wonder how I keep going, but most of all it is a story of my strong faith and lets people know there is always a light at the end of the tunnel. It may not seem relatable, but look in between the lines, everyone has been lost at some point in their life, broken, fearing what is to come next. I have learned to surpass that, and share with people how it is even possible to overcome those obstacles.

My story began the evening of January 24th, 2012. I was a 15 year old girl, who loved  sports! I was a 3 sport athlete, with a total love for  playing soccer! However, on the night of the 24th I was playing a basketball game. That very unpredictable night. I was one of the most aggressive defensive players my team had, and I gave nothing short of my best every time I went out on the court! The team we were playing that night, was a very rough team. Physically and mentally. As the game goes on into the evening, the score board goes back and forth between both teams. After scoring a shot, the score board was now in our favor, and we had to get back on defense. I was in charge of marking their point guard, who had very quick feet and intentionally set me up for the biggest fall of my life. Running to keep up with this crazy fast girl, not aware of where I was headed, I ran straight into a massive post player. I ran right into her shoulder, she was much taller than me and my right temple slammed into her shoulder. After that hit, I freefell to the hard gym floor, it was the back of my head that hit hard against the gym floor.  I’m told it  was the kind of hit that silenced the gym.

Dazed and confused, I tried getting myself up off the gym floor. Miraculously, I did not go unconscious. Eventually my coach ran out to help me off the floor and to the bench. I went into a little panic attack on the bench, because I was so confused. Knowing something was wrong with me, I tried to stay calm. Surprisingly, the trainer at the gym dismissed me as nothing was wrong, just a bump on the head and to go home and sleep it off. No concussion, nothing. My mom on the other hand, was not going to settle that easy, so off to the emergency room we went. I remember feeling so tired and more worn out than usual, and just uneasy with my surroundings in the ER waiting room. Once admitted, the ER doctor came in for the evaluation, and sure enough I was diagnosed with a concussion and told I will deal with post concussive syndrome over the next few weeks or months.  I was told school would most likely become a bit difficult. That night we did not realize the severity of this hit, only the next few mornings would start to bring answers.

My dad was gone on a business trip that week, so my mom and siblings were home with me. In the morning when I woke up, I was in my moms bed with her, rather confused and very quiet. I remember seeing my mom first thing when I woke up, and asking her why I was in bed with her. She said I had a rough night, and thought it was best that I slept in her bed with her.  That day I slept pretty much the whole day and night. My mom said I wouldn’t eat and really didn’t want much to drink.  The next morning I awoke in my mom and dads bed again. My mom just sat next to me talking just a bit to me.  There was a phone laying next to me by the bed in the morning, so I was looking through it, and scrolling through pictures. I was looking at all these faces, they had no names to me. They were all strangers to me. My cousins, friends, boyfriend and even family.. I did not know them or understand why.  I think my mom was just as confused as me. We went through all the pictures together, and none of them rang a bell. This realization was the first of many to come.

Throughout the week, more and more things came about that I did not remember. My recollection of colors, food, geography, family members, friends, animals, places, my past, holidays, seasons, even my own boyfriend. All of those were lost in my head somewhere. My short term memory was horrible, and my long term memory seemed to have went completely missing. Another unusual thing that happened was that I became completely literal. I did not understand the concept of joking, innuendos or sarcasm. Also, cartoon characters and animated shows or movies tended to scare me. I really thought that all of those things were real. Still today, when I become tired, I am more apt to be quite literal and skittish around animation. The most difficult thing though was not knowing who my Dad was.  He  had been gone on a business trip and when he came back I just had no idea who he was. When he started crying, I could not help but to cry either. I mean, after all, I was not sure what I was crying about anyway . He kept reassuring me, and said that all will be ok and I would heal.  As scared as I was, I just kept trucking along.

A week after my accident, I went in to get an MRI. I had a CAT scan in the ER, which both turned out to be normal. My head injury has stumped my doctors and neurologists, as well as, my Neuropsychologists. They say they have never seen a case like this before with so much memory loss . I went on with my regular life as much as I could. I stayed home for a few days from school until I thought I was ready to go back. We did not realize the fatigue I had until I tried going back to school. My school was very understanding with me when it came time to go back. I was on half days of school for the rest of my sophomore year and  3/4 of my junior year of high school. Now a senior, I am able to go full days. I am on a 504 plan, which enables me to get accommodations with school work and tests and gives me extra time on any assignments I need. For about 4 weeks, I knew nobody’s names at school. No teachers, friends, classmates, nobody! My boyfriend, Adam, was the one who helped me with everyone’s names and helped me find my classes. I had to re-meet him several times in order to remember who he was. To this day, he still shares many memories with me that I do not have.

For 6 months to a year after my concussion, I battled  headaches and sometimes dizziness.  When I am tired, I  still struggle with lights and noise. I also have a difficult time now with crowds. The fatigue I have is  like no other fatigue I have experienced before and still struggle with it daily. Naps were a normal thing to me, and they still are. After school, I would snuggle up in bed and sleep for 4 hours when I did half days. Now that I am consistently going full days, every so often I take a day off of school to catch up on my sleep.

As of right now, I am going through neuro feedback, and seeing if it will in fact help my fatigue. I have been resting and going along with my normal life as much as possible.  I  am still getting some memory back here and there. I am hoping to get back my energy like I had before, but I also know that coming out of a traumatic brain injury like this, I will certainly not be the same girl as before. No one could possibly be the same as before. I would say all of the colors, food, animals, geography, people, etc. that I have come to know in these past 21 months, has all been taught to me, or I have learned on my own. As of right now I am still learning these things, I  definitely forget a lot of these common topics, but  I am trying to learn them still. I am not about to give up on my struggle though. I really do love life! There have definitely been times where I could have easily given up, but my faith in the Lord and in myself, along with the love from my family and  boyfriend Adam has kept me on my feet. I have learned not to be embarrassed when I make remarks, or do not understand something, because God has a plan for me. God has a special plan for each and every injured mind.  I Know His plan is an amazing one.  In the book of Jeremiah it says, “Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise”(17:14). This is why I keep going, this is why my experience will be shaped into a story of faith and encouragement for others and also myself. There is always light when things seem dark.

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.

oregon

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

logo

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

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.

mad5

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.

mad3

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.

mad2

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
  • www.knockoutproject.org
  • concussions april 2013
  • ride at disney world feels like concussion
  • theknockout.org concussion
  • junior seau eye of a champion #45
  • a soccer player
  • kevin saum project
  • concussion project.org
  • www.theknockoutproject.org
  • the knockout project new jersey jensen concussion soccer
  • http://theknockoutproject.org/
  • concussed me
  • 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
  • kevin saum the knockout project
  • the knockout project-21st century
  • 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
  • jay fraga bmx
  • 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
  • knockout jay fraga
  • bradley multiple concussion
  • concussions in sports paraphrases
  • athlete and concussions story
  • football post concussions
  • 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.