Tag Archives: 504 plan

Virginia HS Junior Reflects On “The Journey”

{Editor’s note:  When we tell our stories, it’s as much to get them off our chest as it is to release the regret that we feel for having done something to ourselves that likely could have turned out differently if we knew ahead of time that suffering like this was even remotely possible. Marissa is very eloquent in this piece, but what should not be lost while reading it is the very real physical and emotional pain that she still feels to this day. Saving others the expense of dealing with this pain is a common thread in all of our experiences. These stories are all here for a reason. Heed them. –Jay}

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Marissa, left, and friend

By Marissa Flora

“Invincible,” the word that would rush through my head each time I stepped out on the field.  It was a reminder that I would never be the one to get hurt, and if I did, I somehow convinced myself that I could play through anything and I would be just fine.  These days, that idea has changed; “invisible,” is now the word that rushes through my head each time someone does not ask, “What’s wrong?”  No one can see my injury, no one understands what I struggle with to get through the day, and no one knows how much harder I have to work to be successful. Continue reading

Simmons College Freshman Reflects on the Past Three Years with PCS

By Madeline Uretsky

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Recently in my college writing class, I was assigned to write a paper on a learning experience. Naturally, I chose to write about living with a brain injury. I hope that this can be of help to anyone suffering, or any caregivers who may need hope.

Sunglasses on, and slumped in my seat, I awaited the verdict at the first of many appointments with my neurosurgeon. After producing an unsatisfactory symptom chart, and failing almost every test, I knew that I would be diagnosed with a severe concussion and neck injury. Everyone I had come in contact with could tell that something was just not right with me. Was it the fact that I had no short-term memory? That I wore sunglasses inside my dark house? That I could not walk on my own? Or, that I was unable to hold a conversation? My fifteen-year-old self never could have predicted the physical and emotional effects that followed this first appointment. While painfully recovering from this injury for over three years, persevering and giving hope to others has helped me to find my place in this world. Continue reading

A Letter to Myself, Two Years Ago

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

By Alicia Jensen

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Alicia, second from right 

Dear Alicia,

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

Joanne Stankos, Mother of Twelve Year Old Taekwondo Black Belt Jaden, Tells “Jaden’s Story”

{Editor’s note: This piece speaks for itself, but I just wanted to mention how proud I am of Jaden and his family for the work they are doing during their journey. Jaden, you’re an impressive young man and a true warrior. I hope that I get a chance to meet you and your Mom at some point! –Jay}

By Joanne Stankos

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This is Jaden’s story.  His story of living with Post Concussion Syndrome.  He would write this on his own if he could, but he can’t.  His story is like so many other suffering with PCS.  But his takes a slightly different turn.  But I am getting ahead of myself here.  I am his mom.  I hope I do him justice by telling his story.  He will definitely let me know.

July 2, 2013.  That is when Jaden’s life changed.  I can still hear the deafening sound of the arena going silent when it happened.  It was the only time I have cried immediately upon seeing Jaden get kicked.  I knew that this time was different.  Little did I know how different.   We had just entered into the world of PCS. Continue reading

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

By Alicia Jensen

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

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

Multiple Concussions and Multiple Missed Chances Highlight NJ Soccer Player’s Story

{Editor’s note: Wow, where do I start with this story? It’s wince-worthy from almost the word “go”. I guess there are some things that stand out to me: There just isn’t enough oversight when it comes to recreational (ie: non- HS sanctioned) sports. Far too few of our kids are overseen by qualified Athletic Trainers. Somehow, we must increase awareness of injuries that athletes are suffering in these settings. That comes down to parents and coaches being more aware, since the odds are against our kids speaking up when they need to. Frankly, Haley never should have been allowed to play anything in short order the way that she was able to. Not speaking up and playing hurt took contact sports away from her- there is no doubt about it. Had Haley spoken up, been adequately treated, had time to heal, and observed a legitimate return to play protocol, the chances are much better that she would still be playing sports right now. That’s a tough lesson to learn. Hopefully, someone in a similar position will read her story and think twice about being vocal that they’ve been injured. Playing hurt for just one game can absolutely take the rest of them away from you forever, as Haley’s story clearly shows. –Jay}

By Haley Mahony

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As I jumped up to head the ball, I knew exactly what the consequences would be. But, I did it anyway, as I had done many times. Before my first concussion, I knew nothing about concussions. Concussion was just a word in the dictionary to me. I didn’t think that something could be so serious and change my life forever in many ways.

I got my first concussion my freshman year of high school in September of 2011. On that Monday morning, I was brushing my teeth and getting ready for school. As I went to spit my toothpaste out, I sneezed and hit my head on the faucet. Everyone laughs at the story. I guess it’s a funny story, but it changed my life forever. When I tell people, they tell me that I should make up a different story and pretend that it never happened. At the time, I was playing on the freshman high school soccer team and the concussion forced me to sit. 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

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.

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.