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.

Press Release: New Interactive Feature, “What Brought You Here?” Launches Oct 13th

FOR IMMEDIATE RELEASE:

The Knockout Project Announces New Interactive Feature, “What Brought You Here?”

Belchertown, Massachusetts – September 23, 2013 – The concussion education website “The Knockout Project” is taking a leap forward in terms of relevant content delivery.

Since founding The Knockout Project in late 2012, former athlete and multiple concussion sufferer Jason Fraga has been working on shaping the content that the fledgling website would provide. Said Fraga, “I had a vision for the void that The Project would fill, but the truth is, I knew from the start that this would be a work in progress. It was important to me that we would rush to get the website online – even if it were skeletal in the beginning.”

Realizing the potential of site metrics, Fraga came up with the concept of “What Brought You Here?”

“Immediately, it became clear from referrer stats that questions typed into search engines- which ultimately delivered people to our website- were a valuable and sometimes heartbreaking commodity. People in the throes of concussion aftermath are often desperate for answers- answers that are sometimes lacking with medical professionals in their area. We’ve been down that road already and can offer insight. To that end, “What Brought You Here?” is a short video segment produced by members of The Knockout Project Round Table (our Board members) that gives us a way to address our audience in the most personal terms: by answering their questions directly on a weekly or bi-weekly basis. In addition to scouring search engine terms, we’ll post a link where users can submit their questions to us. Knowledge is a valuable commodity, and we aim to provide it to people on a number of fronts: Prevention, possible treatments, as well as an outlet for people to get their stories off their chests. All are important in our view. The bottom line is that we’re very excited about the possibilities that this initiative brings.”

ABOUT THE KNOCKOUT PROJECT:

Founded in November 2012, The Knockout Project was an answer to an athlete’s struggles while dealing with the aftermath of Post-Concussion Syndrome. Those struggles manifested themselves in a number of ways: Physical, Cognitive, and Emotional. That athlete was determined to educate others so that they didn’t make the same mistakes that he did- in the hope that others would avoid a similar fate.

To know more, visit: http://www.theknockoutproject.org/
Follow us on Twitter: https://twitter.com/#!/knockoutproject
Like us on Facebook: https://www.facebook.com/TheKnockoutProject

Contact:
Jay Fraga
Inbox@theknockoutproject.org
www.theknockoutproject.org
###

If You’ve Just Suffered A Concussion, This Is The Most Important Video to Watch, Understand, and Apply to Yourself.

I can’t even begin to tell you how many of us wouldn’t be in the positions that we’re in if we had this knowledge at the time of our injuries and had acted on it. And, ACTING on it is important. Planting yourself in a dark room is boring. But, you can hack it for a few days. It’s certainly better than the alternative, which is having the injury drag on for weeks, months, or even years. Parents, resist the urge to give in to your kids because they’re “bored” of sitting still. You don’t need the financial burden and time drain that continuous treatment will bring. And, you certainly don’t need a broken kid. Do it right the first time, and don’t screw it up.

Doctor Robert Cantu with the most important two minutes you can spend:

 

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.

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

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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.