Noah Bond from Hull, Georgia struggled through Post-Concussion Syndrome (PCS) symptoms that included daily headaches, severe memory loss and feelings of isolation. Esther Lovett from Cambridge, Massachusetts missed her entire junior year of high school because her symptoms were so bad. Both Noah and Esther fought through their symptoms courageously, and have made it their mission to help others with PCS. The Concussion Legacy Foundation honored both Noah and Esther with the Resilience Award at the 2017 Concussion Legacy Gala. Watch the heartfelt stories of the Lovett and Bond families.
Posted: May 31, 2016 | Written winter of 2015-16 during Esther’s medical leave
Post-Concussion Syndrome (PCS) presents a variety of symptoms which are invisible to others and often ignored or misunderstood. I have often felt that I’ve been lying to myself and to everyone for the past three years about my concussions. I have tried to conceal symptoms because I felt that an athlete is supposed to take hits and be fine—you are expected to push through injuries.
The truth is, I’m not fine. I have had daily chronic headaches, sometimes so severe I vomit; I feel dizzy when I stand up or turn around quickly; sometimes my vision blurs and I struggle to see the classrooms’ whiteboards; and despite my pre-concussion razor-sharp memory, I now sometimes struggle to remember the name of the main character in a book I just read. These things are not normal without a concussion, and it’s ok to acknowledge that.
There have been so many times that having PCS has embarrassed me. Over Christmas, I went to a party with family friends whom I had known since I was very young. These were people who care about me, yet I was so anxious going in there because I didn’t want to tell them that I had to take a medical leave from school. At the party, I avoided eye contact and talked to as few people as possible, which is very unlike me. I was worried that even these friends wouldn’t understand and would think that I wasn’t strong or driven enough to continue. I was even worried about telling some of my extended family. Several of my cousins had graduated from the same high school and I felt awkward having to admit that I had to defer my junior year to recover, though it was certainly no fault of my own.
Nobody should be embarrassed about having PCS. You didn’t ask for this injury, and PCS is a very real condition that is difficult to deal with. If you’re trying your best, that is all you can do and all anyone can ask of you. You should be able to talk about it.
I never liked to talk with most people about my lingering concussion symptoms. I didn’t want to look weak or feel like a victim. Even though I was coping pretty effectively with the injury, and still performing well in school, I feared that if I shared my symptoms, they would make me look subpar.
The main reason that I kept silent was that I worried that people wouldn’t understand. I definitely get weird looks, disbelief, and a lot of questions when I have to tell someone that I’m still suffering with concussion symptoms after three years. Even a sports trainer who should be informed about PCS said in front of teammates that I didn’t have a concussion when I had been suffering with PCS for two years. That is tough to deal with when you are already self-conscious about being concussed. All in all, I often felt it was better to not give anyone a chance to say something hurtful.
In retrospect, it is better to never stop talking about it. What you are dealing with is probably one of the hardest things you’ve gone through, more than most kids your age have had to endure, and you deserve to talk about it.
If someone doesn’t understand your suffering, don’t feel bad and get filled with self-doubt, but educate him or her. Tell them about PCS and your experiences and inform them about the medical evidence if they question. For every few people who roll their eyes or ask you if you’re “milking it,” there will be a true friend who cares and tells you that you’re strong and that you are doing a fantastic job coping. Those are the people you keep in your corner. I regret not standing up to more people when they questioned my injury.
There’s a balance between acknowledging that you have PCS and that it is hard, but not letting it consume you and your life.
I definitely had trouble with the acknowledging part. My mentality was to just keep on going, and not to dwell on what I had lost and how PCS was affecting me daily. After a while, the symptoms just become normal. When I eventually had to take a medical leave from school after my second concussion, and there was no more pretending that nothing was wrong, the years of symptoms and losses hit me so hard. All of the emotions of having to leave my school community, my friends, my great teachers, my beloved extracurriculars plus two and a half years of pent up frustration and losses hit me all at once.
I encourage you to keep checking in with yourself. Ask yourself how you’re really doing and give yourself an honest answer—don’t push those questions away to save for later. Find those good, supportive friends or family members and keep talking to them. Be honest with them as well. I have found that talking about it with others is often the most therapeutic and you shouldn’t have to go through this alone.
It’s ok to not be ok. It’s ok to ask for help. Always keep fighting, but it’s about the big picture, not each little battle. If you can’t do a homework assignment, don’t stay up late with an excruciating headache to try and finish because you aren’t getting anything out of it and you’re hurting yourself. Give yourself a break and go to bed. Your teacher will understand. Look at your recovery in its entirety and be happy with how far you’ve come and how much you’ve achieved.
Don’t get hung up on all of the losses, but allow yourself to acknowledge all that you have been through. Only then can you truly move on.
Posted: August 8, 2016 | Written winter of 2015-16 during Esther’s medical leave
I have found it hard to find support from my friends. Some of the lack of support results from my personality, as I am not a complainer and don’t like looking weak.
After my first serious concussion in eighth grade, there was an initial outreach of support. Once I was back in school, the support pretty much stopped, and that is when I needed it the most.
I was scared. It’s terrifying to be in situations in which you normally thrive, like giving a presentation or studying for a test, and feeling like something is very, very wrong.
Right after my injury, when I should have been home in a darkened room, I went to school to give a science presentation for which I was well prepared because but I didn’t want to let my partners down. That’s when I realized how symptomatic I was: I shook from head to toe, almost vomited, had a splitting headache and could barely stand the stimulation of the noisy environment.
Returning to school, I would try to study and I couldn’t remember most of what we had learned. Struggling through the adjustment to my symptoms was when I really needed support from friends.
I thought that this year I would be fine with my medical leave from 11th grade, but when I had to announce to all of my friends it became all too real. Having to say ‘I’m going on medical leave effective tomorrow’ hit me hard.
I had a little speech planned out: As you all know I got another really bad concussion and at this point I just cannot do what the school needs me to do to be a Junior. I’m going on medical leave, effective tomorrow. I have a spot here as a Junior next year and I’m also applying out to other schools to have options. I really hope to still be friends with all of you. I’ll still be in the neighborhood—I’ll be taking online classes and doing an internship. Expect invites to my house—Super Bowl party is on—and I hope that when you all do things together you’ll include me. I’m going to need friends more than ever over the next few months. Thank you guys for everything.
I only got to ‘I’m leaving school’ before I couldn’t keep it together. There was no denying it any longer, no pretending that it wasn’t happening—and it was awful.
I never cry, I dislike crying, and more than anything I hate crying in front of other people. I think it freaked my friends out since they had never seen me cry before. Right after that decision, I was numb. I had no idea what my year was going to be like and I already missed my friends and school.
You would think that the fact a friend who never cries and is always active had to leave the school she attended for twelve years and was clearly very upset about it would elicit sympathy and concern. It did with most of my friends, but some were surprisingly insensitive. Probably the worst thing a friend said to me that day was “we’ll all be living vicariously through you.” I spent most of my days alone at home taking online classes, trying to get exercise although there isn’t much that doesn’t hurt my head, and trying to do normal things like reading. Not how I wanted my junior year to go.
Only a few of my friends reached out. ‘Out of sight, out of mind,’ I guess.
There have been good things. My best friend, though she has little time with a busy Junior year, has been there during the times when I really needed someone. I have one friend who I wouldn’t have considered one of my best friends who texts me often with a simple ‘how is everything? How’s your head?’ and honestly that means the world. It’s that simple. And I will always remember his kindness. I have another friend who checks in, and it always means a lot to hear from her and be updated on what is happening at school. I am so grateful to the friends who have reached out.
It feels awful to be suffering through the worst thing that has happened in your life and have almost radio silence from many of your good friends. You place so much trust in friends and you expect them to be there in hard times. Someone I considered one of my closest friends didn’t respond to my upbeat texts suggesting we do something together. I know she is busy but an “I’m so busy I can’t get together but thinking of you” text would have taken 15 seconds. She told a mutual friend to tell me that she was too busy to talk but would call soon—she never did. I haven’t really talked with her in nine months. After reaching out several times, with no response, I just stopped trying—it got embarrassing for me. When she finally got in touch with me I agreed to get together, though I felt like our friendship was likely already over. When she told me during lunch that she totally understood what I had gone through because she had come back from a trip and had expected more friends to contact her to get together when she returned, I really knew that our friendship would never be the same. That comment was unjust—she has absolutely no idea what I had been through this year. How could she if she didn’t speak to me at all? It was like she was a totally different person.
I learned an important lesson about friends through my experience as I truly saw who was there for me. It was hard to realize that a few people who I considered very good friends completely let me down; to not talk to a good friend for nine months is awful, especially when they are going through something difficult. I also realized that you are very lucky if you have a couple of really good friends and that at the end of the day, a lot of people won’t be there for you even if you would be for them. I’m extremely thankful for the friends who were there this year, and I will always remember those who were. I’ll still spend time with the friends who weren’t, I just understand that they aren’t my close friends.
I think to a lot of people, concussion doesn’t seem very serious. I don’t know if my friends realize that it’s been over three years of headaches every single day and how debilitating that is. I don’t know if they can empathize with how much losing soccer meant to me.
Soccer was a piece of my identity, an entire friend group, a coach who was a mentor, and simply something that I loved doing and had poured so much time and effort into. It was so hard to come to terms with that loss. I still have a huge drawer in my closet labeled ‘soccer stuff.’ It is filled with a bin with pairs of socks, a stack of old jerseys and shorts from different teams I played on, and all of my club soccer jerseys and warmups right on top, waiting for the next game. I waited a long time for that next game and it killed me to have to give that all up. I have tried so many times to open that drawer and clean it out and give the shirts to charity, to someone who could wear them, but I can’t seem to bring myself to do it. It’s not only a reminder of losing soccer but of all of the losses: hockey, tennis, 20/10 vision, pain-free days, ease in academics, running, watching action movies.
My friends don’t know that while I was in Florida for a week on holiday, my Snapchats made it look like I was having a great time but my experience was difficult. I got a terrible headache on New Year’s Eve (from a normal amount of sun and activity which was way too much for me), and spent the evening in my darkened room rather than at the party at the beach. At midnight I was doubled over the toilet vomiting because of the excruciating headache rather than listening to live music. I’m not always sure how to talk about these things with my friends since they rarely ask and I just don’t like to complain.
I encourage you, as I am encouraging myself, to say something, anything. These are your friends, the people who are supposed to have your back and be in your corner. Maybe they don’t know what to say. My experience isn’t a common high school experience and I think a lot of times people want to reach out, but they don’t know what to say because they cannot fathom this happening to them.
The kid out there silently suffering doesn’t need or expect hours of your time. A quick ‘how are you?’ text, a Snapchat, anything. It only takes a moment to show you care.
I’ve been fortunate to meet a variety of Post-Concussion Syndrome (PCS) sufferers — from NFL players to other high schoolers — who have helped me realize that while PCS can prey upon anyone, we also can work to stop it. At the end of the day we want the same things: to protect others and to leave our sports—whatever sport, whatever level—better than we had found them. So, with camaraderie and in the hopes of providing the answers, that these athletes and I lacked, to protect future athletes, on my 18th birthday I pledged my brain to science, making me the youngest CLF brain pledge ever.
I suffered with PCS for over four years, enduring daily headaches, struggles with memory, having to defer my entire junior year, and ultimately giving up contact sports. Now significantly recovered, I remain committed to sharing my experiences in the hopes of helping others.
I’ve relentlessly sought answers to why some symptoms are so long-lasting, and what the most effective treatments are for them. Unfortunately, there is a dearth of information when it comes to PCS, and what is available has been scattered.
I was extremely fortunate to connect with Chris Nowinski and the Concussion Legacy Foundation. Through CLF, I’ve reached other people struggling with PCS. By sharing my experiences and being an advocate via CLF and my website Headstrong, I hope to provide answers to others, even if the answer is that there aren’t many. I don’t want other people to feel helpless and out of control–I want them to have more information. I’ve decided to pledge my brain to research to the VA-BU-CLF Brain Bank.
I tell people to “get yourself back in the game, even if it’s a new game,” and that advice has two meanings. First, don’t be a victim of concussion and PCS and even if you have to totally redefine yourself, as I did, you can do it. Second, we have to put kids back into a new game of football or a new game of soccer that is safer without ruining the integrity of the game. Sports are invaluable. I do not regret playing sports, nor do I want contact sports to be ruined. But, I think everyone can agree that we don’t need kids to get hit in the head so much at a young age that they are forced to stop playing.
Most of the research done at the VA-BU-CLF Brain Bank is focused on Chronic Traumatic Encephalopathy (CTE), a neurodegenerative brain disease linked to repetitive head trauma. CTE recently made massive headlines when studies were published showing that 110 of 111 NFL players studied had CTE. Through CLF, I have met athletes and families for whom CTE is, or will be, a major concern. The effects of CTE, which can cause personalities and minds to deteriorate, are heartbreaking. I am not personally worried about CTE, but I’m still worried about the brains and the future of all young athletes. I want to donate my brain in camaraderie with those affected, and I also hope for answers about PCS.
We also need more answers about the female brain specifically. Females seem to be more susceptible to concussions, which has been largely attributed to less neck strength. I want to know if, as a girl soccer player, I was at significantly more risk for long-term issues than my male counterparts. If research proves that to be true, how can the games be different for girls and boys to reduce this risk? Also, why do girls tend to recover more slowly than boys from concussion? I will leave my brain as part of my concussion legacy in the hopes that it can provide, especially to other girls, answers that future athletes deserve to keep them safe.
I’m incredibly grateful to the Concussion Legacy Foundation. I want to give a massive thank you to Chris and the entire CLF team for their tireless research, education, and devotion to this cause. I can’t think of any other person or organization which could have so perfectly changed my life at the perfect time. I thank them for all that they have done for me and for athletes everywhere.
I have pledged my time, passion, and brain to be a resource for concussion and PCS sufferers, advocates, families, and athletes of all ages in the hope of safer sports, swifter response after head injuries, and heightened awareness in the future. I ask you to help me shed a light on PCS to educate students, athletes, schools, coaches, and families. Let’s start honest conversations about PCS, and let’s get Headstrong.
Posted: April 25, 2016 | Written winter of 2015-16 during Esther’s medical leave
I suffered my first serious concussion in eighth grade. I struggled with Post-Concussion Syndrome (PCS) for about two and a half years and then suffered another serious concussion right before my junior year of high school.
Before my concussion in eighth grade, I played soccer, hockey, and tennis, I was a dedicated student, and life was good. I experienced the concussion during a soccer game, and did not know enough to take myself out of the game despite dizziness, nausea, blurry vision, and confusion. It took me a long time to realize that this was serious. I had no idea that this seemingly harmless hit would turn my life upside down.
Initially, all I wanted to do was play soccer. I wanted to get back to my team and continue playing, but this concussion was something that I could not hide. For the rest of eighth grade, a little over a month, I don’t think I was able to sit through a full class. I spent so much time in the nurse’s office drinking ginger ale and eating saltines.
It was bizarre to be sitting in math class and have all of the numbers on the board blur and get a headache so intense I had to leave class. Normally, I would have been a step ahead, solving homework problems during the lesson. Usually, I would have been excited that we were watching a documentary in history class, but now I would grimace, knowing that after watching the screen for only minutes, I would have to leave the room with a splitting headache and a wave of nausea. Even at the lunch table, because of background noise, I couldn’t focus on the person talking. Usually the one to be cracking jokes, it often took me minutes to get a joke or catch up with conversation.
I just never stopped having symptoms and have been struggling with Post-Concussion Syndrome (PCS) ever since.
Almost a year after this concussion, it fully hit me that I could not play contact sports anymore. I was crushed. Sports were a huge piece of who I was. I defined myself as an athlete. Sports were a shared interest I had with family and friends, and my club soccer team was so special to me. I lost a group of girls that I loved and a coach to whom I looked up and who had been a mentor to me for several years. I had spent probably twenty-five hours a week playing sports. I didn’t even know what to do with myself anymore.
I remember texting with my soccer coach, finally telling him that I definitely could never play again. He said “we all become fans at some point. You just became one a little earlier.” This was so comforting to me. He made it seem so normal and natural, like one door closes and another opens. This conversation gave me closure with soccer and the ability to move on and tackle new things.
‘I’m an athlete, and I can’t play contact sports, and I can’t run. What do I do?’ I remember thinking. My doctor suggested a low impact, non-contact sport; golf fit the bill. I had taken one golf lesson in my life (and I was terrible), but many people in my family were passionate golfers so I decided to try, banking on hereditary natural talent. I remember my first golf lesson. I barely made solid contact with the ball during that hour. Being a beginner at a sport was something I had not experienced since I was four. I was so frustrated. But, it was golf or the chess club so I started working hard. I went to the driving range after school, embarrassing myself in front of everyone, but I went. I took lessons even though it frustrated me that I wasn’t great after just a few lessons. I got better and my competitive spirit was back. Now, I’m not giving hard hits and sliding in mud on the soccer field, but rather hacking my way out of sandpits in polos at the golf course. I can hit a 230-yard drive, though. A change in sport, but once an athlete, always an athlete.
I started writing for my school newspaper, which I would never have had time to do had I been putting so much time into sports. I was appointed as an editor. I became a member of my school’s Disciplinary Committee, and I decided to row crew. I totally reinvented myself.
One of my doctors at Boston Children’s Hospital called me in April of tenth grade, asking me if I would do a live NESN interview with him about concussions and Children’s Brain Injury Center. I immediately said yes, not expecting it to manifest in anything. I quickly realized that I could help and that there are a lot of people out there silently soldiering on with PCS who go under the radar for medical care, with friends and family, and at school. I wanted to reach them because I guessed that they had all felt the same losses, disappointment, fear, and isolation that I had.
I had noticed a lack of education about concussions and PCS since eighth grade and decided that I needed to help change that. I did the interview as well as a few other events with Children’s and grew passionate.
Everything seemed to have fallen into place. I had developed new passions including concussion advocacy, I was still a strong student, and I was dealing with my symptoms. I felt like the ‘comeback kid’ and it felt amazing.
I was poised for a perfect junior year. I was taking two Honors and two AP classes, I was involved in extracurriculars I cared about, and I was feeling better than I had felt since eighth grade. Then, two weeks before school, I fell down a flight of stairs and suffered another bad concussion.
This was absolutely devastating. I tried to return to school and continue on with everything but this time I simply couldn’t.
I ended up having to take a medical leave from the school I had attended since age four. It seemed like yet again, my whole world had crumbled. I couldn’t participate in my school extracurriculars and my symptoms were worse than ever. The task of reinventing myself again seemed impossible.
But, I had my concussion advocacy, and that is what I have dedicated my year to, via an internship with the Concussion Legacy Foundation and continued work with Boston Children’s Hospital.
I want my legacy to be in educating the public – especially teenagers — about concussions and their long-term effects. Every person who plays sports deserves to know the risks—I certainly didn’t. I had no idea when signing up for middle school sports that I would be signing up for three years of headaches and symptoms. There is such a lack of education, even amongst athletes, and this needs to change. Concussion is a pervasive injury and can affect so many aspects of your life.
There are also rule changes that need to be made. Sports need to be safer. Do five year olds need to be tackling? Do six year olds need to be heading or checking into the boards?
I also just want to reach other people with PCS. It is hard to struggle through on your own, never having anyone who truly understands. Knowing that you aren’t alone and that your litany of misunderstood symptoms are a result of your injury is comforting.
I want to reach schools. Many schools do not understand PCS or know how to help students suffering with these symptoms. Many schools attribute PCS symptoms to other diagnosis, which severely disadvantages students with PCS.
I want to dispel this notion that concussion is solely a temporary and non-serious injury because it is simply not factual. True, most people recover in two to four weeks from a concussion, but multiple concussions take a toll. The reason that my eighth grade concussion was so bad was because I had probably suffered several minor concussions that I never took seriously and played through. This is so dangerous. There needs to be a cultural shift in order to change concussion reporting.
I get it, as an athlete you are supposed to be tough. You’re supposed to take hits and be fine. It’s different with head injuries. Playing with a sprain and potentially spraining again is nothing compared to potentially giving up your passions and totally changing your identity. It’s not worth it.
It takes a team to make a change like this. The coaches and players must all understand the severity of concussion and look out for each other. As a teammate, you have your quarterback’s back during the game, protecting him so he can make a play. You also have to have his back when he takes a hit and struggles to get up. Don’t put him back on his feet and give him a slap on the back. You have to say something and get him out of the game. That’s loyalty; putting him in imminent danger is not.
Though taking a medical leave was not ideal and this injury has totally changed my life and mostly not for the better, it’s made me stronger and I’ve realized that I have a cause that I care about more than anything else. I’m all in with concussions. I’ve found a passion and it might be a tad out of the ordinary. I’ve been through a lot and I don’t want other kids to go through what I’ve gone through. This is becoming an epidemic and we need to reverse the terrible effects.
At this point, as a teenager without medical credentials, I can’t cure concussions. So I’m going to do what I can do. I can share my story and my experiences.
I feel like I have an insight that only someone in the throes of PCS has and I want to use that. I want to be a cautionary tale of what happens when you don’t take minor hits seriously, but also as an inspiring story of getting back on your own two feet and getting back in the game even if it’s a new game. I hope that my story is one that other kids suffering with PCS can connect with, and I hope that I can reach schools and sports leagues. I’m all in.
Resilience- nobody is better at getting back in the saddle, no matter how many times they are knocked off.
This is a life lesson. You will have perseverance and resilience like nobody else.
Rallying- we may not be able to sustain pushing through pain for long durations, but we can pull everything together for something big.
Another important tool for the rest of your life. I may have had to take the year off from school but I pulled a 2270 on the SAT when, according to my mom, I walked into the test center swaying and weaving side to side, heavily concussed.
Empathy/not judging- people who have had PCS have an insight into silent suffering and having the exterior and the interior not match up. They may all look fine and happy on the outside whilst struggling with headaches and other symptoms.
As cheesy as it sounds, I feel like I don’t judge people anymore because I have learned that you never know what someone is going through and what burden they are carrying in silence.
Coping- we’ve all been through a lot, and we keep going. I think we’ve all found coping mechanisms to get through losses and pain.
My best coping mechanism is humor. I find solace in joking about my situation. I recently fell asleep on a rug at a friend’s house in front of all of my friends because I hadn’t had my nap and I had a bad headache. This story could highlight my impairments and sad current situation, but I would rather laugh at the fact that I woke up to my friends trying to find out where I was. I could give a list of rough things that have happened to me, but I would rather be laughing. This coping mechanism is also a flaw of mine. I like to make jokes about what has happened to me and I thus sometimes don’t allow myself to fully come to terms with how much it’s affected me. I don’t like crying, but I think I’ve found a balance. Every once in a while I’ll cry to my mom or my best friend, but the rest of the time, I keep my spirits up with jokes.
Realizing who is a true friend and who isn’t- some people care a lot about you and want to help. Others don’t really care or take time to acknowledge what PCS has done to our lives. You learn who will stand by you.
I realized in high school what I think everyone finds out at some point: that you’re lucky if you have one or two really true friends. Though one person who I would have considered a true friend has let me down immensely through this process, I’ve emerged with a best friend with whom I can talk, and for that I am so grateful. I still hang out with my other friends, but I’ve come to terms with the fact that most of them won’t be there for me even if I am for them.
Not taking things for granted.
I have definitely learned that life can change in an instant. With that knowledge, I try to live in the moment and seize opportunities that are offered.
Esther Lovett is a Post-Concussion Syndrome (PCS) survivor, dedicated concussion advocate and beloved CLF blogger. Esther stopped by the CLF offices in Boston before leaving for her freshman year of college to share some tips and wisdom about going back to school with PCS symptoms.
How are your PCS Symptoms these days?
I’ve been getting better over time, it’s been over 5 years that I’ve had PCS throughout a few different concussions. I’ve been seeing Dr. Cantu for a long time and doing different treatments that have helped, and then I think a big piece of it is just learning to manage symptoms and just figuring out how to go day to day still having symptoms and just staying optimistic about different treatments. I just keep getting better and better.
Tell us about your Headstrong Concussion project.
I started working on Headstrong last summer and the website officially came out in February. I’ve been involved with CLF for a long time and I still am, I sort of consider Headstrong my side hustle to CLF. But I just really wanted a place to connect with other kids and create a resource for them where they were getting real information about PCS, especially where they could follow along with my story because I felt it was helpful to me to hear other people’s stories and hear how they dealt with post-concussion syndrome. That helped me make choices during my recovery and just feel a sense of community and that there’s other people who are going through this as well and you’re not struggling alone. So more to create a community and to keep kids optimistic that you’re going to keep getting better and that there are lots of things to do and a lot of people that are going through this with you.
What are you looking forward to about going to college?
I am looking forward to heading off to college this week to Georgetown. I’m just excited to meet new people and figure out what I want to study.
Any back-to-school advice for people with PCS concerns?
I think it’s definitely important to talk to your doctor if you need any accommodations for school. Also just figuring out, whether it be neuro-psych testing or more just through your own experience, where you feel that you need more help and then either reaching out to find resources or yourself finding new ways to study. That really helps just to frame it in a new way. There’s a lot of resources at whatever school you’re at whether you’re in college or high school. Reach out and get a hold of those resources and make sure that you’re not struggling alone. Definitely be a self advocate and figure out what works for you. It may take a little longer to study, it can be frustrating at times, I know. But you’re going to find a way to do it for sure, and then you’re going to get better.
Any tips for managing PCS during the school year?
Through CLF and through my website Headstrong, I still talk to a lot of kids who are going through PCS as well and I think it’s really helpful to create a sense of community and connect with other kids who are going through something similar. Some tips I have for school – definitely utilize naps, naps are so underrated and can help give you a little boost after school before doing homework. Also, if you have struggles with your memory like I did, start studying early for tests and try using different mnemonic devices to help you remember. That’s been super helpful for me.
Disclaimer: I am not a medical professional. The advice that I’m giving is based on my personal experience and treatments that have worked for me. Please consult with your doctor before beginning any of the treatments.
Thank you to everyone who submitted questions on Post-Concussion Syndrome (PCS) for this #AskEsther mailbag! If you need a reminder of who I am, you’ll find that here. I hope to have more content soon, so if you have questions on PCS for a teenager who has been through it, don’t stop sending them to [email protected]. Now… on to the mailbag!
From Jenn
Hi Esther — my 13 yr old daughter had a severe concussion during a soccer game over 2 years ago. She has since struggled with migraines, neck pain, her grades have suffered, and she has not been the same socially. She went through extensive physical therapy for about a year following the concussion to help her back and neck. Is there anything we can do to help her with these other things that might be associated with her concussion?
Thanks for your help!
Jenn,
I’m so sorry to hear about your daughter, and I can relate to what she’s going through. Physical therapy significantly helped me with my symptoms. The aspect of PT that was most helpful for me was vestibular therapy, which not all PT includes. Vestibular therapy can help with neck pain and headaches. In addition, my physical therapist gave me exercises for my eyes; I had a severe convergence insufficiency, which meant that I was seeing double much too far away which made reading and schoolwork difficult. I had no idea that I had this convergence issue so I’d suggest asking about it even if your daughter doesn’t have any eye symptoms. Improving this helped my headaches and made schoolwork easier.
I would also recommend Cognitive Behavioral Therapy (CBT), which is basically memory and executive functioning retraining; doing CBT made me feel confident about going back to school after concussions, and I really credit it with my success in school. Finding a CBT specialist may not be easy: make sure that he or she combines memory retraining with helpful daily skills.
In terms of school and grades, help your daughter find good advocates at school (a school nurse, teacher, adviser) since she may need accommodations such as extra time or reduced coursework. Her school may ask for neuropsychological testing in order to grant accommodations.
Other treatments that I tried were acupuncture, chiropractic therapy, massage, and migraine medications; I would suggest talking with your doctor about any of those. The Concussion Legacy Foundation has some great content on PCS treatments here.
As I understand it, and I’m not a doctor, headaches with PCS can be migrainous, and they can also be tension headaches as a result of having to try harder to stay focused. Ask your daughter’s doctor to help her distinguish which she might be having.
You also mentioned that your daughter has not been the same socially. I have found the social piece one of the hardest things during my concussion journey. I think it is extremely important to stay social, but oftentimes social engagements seem like a burden. I’m in high school, and I’ve found that I just can’t go to parties because of the noise, stimulation, and lights, but I’ve found alternative ways to still see friends. I’d recommend finding quiet restaurants to go to dinner with friends or having friends over to watch a movie rather than going to the cinema, which can be a lot of stimulation. And please tell her not to be afraid to tell her friends why she can’t participate in certain things. I have found that while some friends cannot understand or even remotely empathize with invisible symptoms, good friends are more than happy to accommodate you.
Hope this helps, and I wish all the best to you and your daughter!
Esther
From Jennifer
In September, it will be two years since I was run over by my horse. I don’t remember any of it, and I was in the hospital for 3 days and 2 nights, I didn’t break anything, it was for the concussion, and I couldn’t remember what someone said to me the moment before for about 20 hours afterwards apparently. It was a rough go for several months afterwards, I’m doing much better now, however I still get light headed every time my head bends down low, will this go away at some point or can I expect to deal with that indefinitely?
Jennifer,
I’m glad that you are feeling better now, but that sounds like such an awful experience! The lightheadedness is hard—I’ve experienced it as well. One thing that may help is vestibular therapy, which helps dizziness, lightheadedness, and balance. You might also ask a trained physical therapist or specialized eye doctor to check you for any vision problems, such as convergence insufficiency. These therapies helped to decrease my dizziness and lightheadedness.
Generally, when you’ve suffered with symptoms for a while you can think that this will be a problem forever, but I urge you to be hopeful since you certainly have been recovering since this injury!
All the best,
Esther
From Marrianne
Hi Esther,
I’ve never had a concussion before until I had a really bad fall on May 10th, 2017. It was more like a “flying face plant” to the floor, rushing through the airport full speed, and tripped over a table and went flying and landed on my face/head. Paramedics checked me out, but I didn’t want to go right to the hospital because I hadn’t seen my son in 2 years. However, the next morning the pain was twice as bad all over, & in my head and my right eye was swollen shut. My husband took me to the ER and they did a CT scan, lots of x-rays, etc. I was bruised from head to toe, but only broken nose and lots of swelling above my right eye. Really big bump on the forehead above right eye. I’ve also had my eyes checked w/ an ophthalmologist because my right eye vision is just a little off, not terribly blurry, but a little around the periphery. He didn’t find anything wrong, and said something like if there’s swelling inside pressing on my optic nerve there’s nothing he can do about that anyway. I’m hoping that the swelling will continue to go down and it will get better. I use ice packs on my head, warm wraps on my very painful neck, etc.
Previous to all this I had chronic migraines which doesn’t help matters, but my question is that as the weeks have gone on I was still having daily headaches and nausea every day which has been super bad some days. No actual vomiting, just nausea. I have read a lot since the accident about concussions and realize how important rest is, and I’ve tried in the last couple days to rest more (actually feel like I’ve done nothing, other than washing dishes and a little laundry; which is hard for me- I normally work from home, and do lots of computer work, I know the screen time has to be limited). The last two days have been a little bit better, no nausea.
Would you still advise seeing a neurologist at this point or not? I’m frustrated because I don’t know how much rest is rest. And I don’t know how long this is supposed to take to recover.
If you can give any advice I will really appreciate it!
Thank you!
Marrianne,
I’m so sorry to hear that you experienced this! I would definitely suggest seeing a neurologist since you are still experiencing symptoms.
As for rest, this was a hard thing for me to gage as well; if you are used doing a lot and always being busy it can be very hard to take time off, but it’s very important to do so, especially if you have felt better the last two days whilst resting—seems like your brain needs this. I think taking frequent breaks from tasks and especially from screen time can be very helpful. I would also recommend a yellow filter for your screen when you have to use a screen (you can use a clear plastic folder from Staples). Anything you can do to reduce stimulation to light, noise, elevated heart rate, and cognitive work would help now in my experience. Wear sunglasses when outside, when indoors face away from sunlit windows, try to avoid stimulating environments (sometimes a mall or loud restaurant can feel very overwhelming).
Some people with Post-Concussion Syndrome experience migraine-like headaches, so your history of migraines confuses things, and your vision issue may be contributing. A good neurologist may be helpful.
I wake up most days with a headache. Sometimes a cup of tea does it, but other times I need two Motrin and twenty minutes more sleep. Sometimes I need two hours and miss classes. At school, I put a strong face on. I smile, I engage in class, I work hard, and I get good grades. However, sitting in class I often find the board blurring in front of me and I have to work so hard to keep all of the writing as just one of itself. The teacher’s voice often goes in and out as I struggle to focus with a splitting headache.
During free periods, I spend all of my time doing homework because it just takes me longer to do everything. I have to carefully plan how I study. Prior to the injury, I had an excellent memory which was advantageous for school. After, I struggled with my memory and other symptoms. I could no longer just quickly review work the night before, so I began to have to plan more before any assessment, carefully making study guides, and using mnemonic devices to master vocabulary. I could no longer sit for four hours straight and complete all of my assignments. I had to set a timer for thirty minutes, get up, stretch, do some jumping jacks, drink water, and then return back to work. I still quickly understand material, and my performance and output are as strong as they were pre-concussion – I just have to work differently. Initially it was frustrating to have to drastically alter the way that I studied, but I have made it work.
I had to totally change the way that I exercise as well. Rather than playing team sports, running, and doing workouts specific to my sports, I found myself having to work out just to work out. No longer able to run, I had to switch to Pilates, yoga, and light weights, always careful not to hurt my neck or back more.
It is hard to have to change so many routine things that you never imagined would have to change. Once a stress reliever and something I enjoyed, running even for just a few minutes leaves me extremely dizzy and nauseated with a blood-pounding headache.
When I’ve thrown up at school because of a headache, I had to just continue my day because I hate complaining and I didn’t want to miss school.
With a bad headache I often become very sensitive to smell. I feel bad when I turn down a meal that is usually one of my favorites and have to go to a dark room instead of eating with my family.
I sometimes get really irritable. I was a very calm and ‘go with the flow’ person, and now, sometimes the littlest things just really annoy me.
My confidence has taken a toll. When you no longer feel like yourself and struggle to remember things, you don’t feel very confident about schoolwork. I was always a strong student and now I tentatively submit my answers to online quizzes. Though I still receive good grades, they come with more work and stress.
I used to have 20/10 vision in both eyes and my eye doctor told me that I should be an aviator with such crisp vision. Now, I squint to read and my vision blurs or doubles – I don’t think I’ll be piloting any time soon.
I used to put my hair in a ponytail almost every day. Now, ponytails worsen my headache so even when working out, I have to leave my hair down or in a braid.
I sometimes wear sunglasses inside my house while doing work since sunlight and glare make me headachy. I wear sunglasses almost all of the time when I’m outside.
I randomly lose my balance and get dizzy. I guess I’m glad that I can make people laugh as I topple over or near-miss a wall, but it is disconcerting to walk around when everything is blurry or have a conversation when the person is blurry and double.
I always considered myself a quick wit, and now I laugh with a considerable delay or think of a great addition to a conversation that happened five minutes ago.
All of these things show how pervasive Post-Concussion Syndrome (PCS) is. It’s not just your sport or just your academics. It’s your whole life and each little loss and change adds up.
