Renewed Purpose After PCS: Ryan Pamplin’s Story

Posted: August 5, 2020

“I was really motivated coming out of my injury to do something about the injury that would make it so I could look back and be glad that it happened,” Pamplin said.

In this CLF Personal Story video, Pamplin vividly details his toughest days with PCS feeling like he was in a “mental jail,” and how he was able to make it through.

“There’s just no relief,” Pamplin said. “You lay down you want to get some sleep; you can’t get good sleep. For me I had terrible vivid dreams every single night so I would wake up just drained emotionally and physically from the dreams. I would go back to the doctor and the doctor would just say, ‘give it time.’”

After about three months, Pamplin was able to slowly return to reading and spending limited time on his phone.

“It was just over time building up my tolerance of what I could actually do to get back to a place that I could function like a normal human,” Pamplin said.

He hopes sharing his recovery success story will encourage and inspire others.

“There is comfort in knowing that other people have come out the other end of it and survived and thrived,” Pamplin said.


Are you or someone you know struggling with lingering concussion symptoms? We support patients and families through the CLF HelpLine, which provides personalized help to those struggling with the outcomes of brain injury. If you are seeking guidance on how to choose the right doctor, find educational resources, or have any other specific questions, we want to hear from you. Submit your request to the CLF HelpLine and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

Changing Course: New Passion After Concussion

Posted: July 27, 2020

August 2019:

In the past two years, everything I once knew about my life changed. I was left in an ominous, dark place. My vibrant world shattered, and I’ve been trying to put the pieces together since. The cause of these life-altering circumstances? Concussions.

Before experiencing one of my own, the word “concussion” carried little weight. I had no awareness of the magnitude and severity a concussion could potentially have. At the time, I only knew of people experiencing minor concussions which seemed to have little to no impact on their actual life.

I hate to admit this, but I viewed players that didn’t practice or compete in their sport due to a concussion-related injury as somewhat undedicated — or even mentally weak. Growing up in athletics, I was taught to push through physical pain unless the injury was serious. Unlike other serious injuries, concussions are not visible, so understandably I viewed them as less significant. I thought having a concussion just meant that you would experience some headaches, a little light sensitivity, and that you were “supposed” to rest/not practice for a couple of days.

Boy, was I wrong.

It took having three concussions for me to finally understand the severity and detrimental effects concussions can have.

I received my first concussion during volleyball practice my freshman year at the University of North Carolina. We were doing a drill called “pit.” In the pit drill, one player is on the court at a time, going all out after each ball, which is hit at every imaginable speed and angle. Normally, the player digs a hard-driven hit or flails to pick up low shots. During the play where I got concussed, my coach tossed a ball fairly high down the line. I could have easily run there to play the ball on my feet without having to dive. However, in the most un-volleyball like manner, I took two steps to the corner, turned my body to the ball, and launched myself in its direction. I was parallel to the ground, at least three feet in the air, resembling the form of a perfect pool day “belly flop.”

Gravity took it from there and my face broke the fall. My teeth hit first (which I would later need orthodontic work to fix), then my nose, and lastly my forehead. I blacked out. The next thing I remember was waking up feeling liquid streaming down my face. I was confused and in pain. For some reason, I was determined to prove I wasn’t crying, so I announced to the circle of teammates surrounding me, “I promise I’m not crying,” to which someone quickly responded, “it’s blood, not tears.”

By this point, the athletic trainers were by my side to bring me off the court. I was completely out of it. Every time the trainers attempted to stand me up, my body would go limp and I would start to pass out.

The pain didn’t start to kick in until I was placed in the wheelchair that brought me out of the gym. My normal senses began to deteriorate, and indescribable suffering came in their place.

To this day, the most excruciating pain I have ever experienced was the 30 minutes that followed my head smashing into the gym floor of Carmichael Arena.

The intense ringing that filled my ears led me to believe my eardrums were going to rupture. Everything in the room seemed to be spinning at an inconceivable rate and being pushed in the wheelchair only exasperated this. While I was whisked away, I felt as if I was on one of those fast-spinning, gravity-defying carnival rides that you would find at the state fair — the kind of ride that makes you sick to your stomach. By this time, I was nauseous and aggressively dry heaving. My throat felt like it was closing up, and I was gasping for air. The pounding in my head was extreme; it felt like something was trying to break out from inside my skull. My eyes ached, and my vision was clouded with piercing white light. It almost felt cinematic, like a dying character being told “don’t go into the light.”

I remember experiencing all of this simultaneously, while also streaming in and out of consciousness. I even asked my trainer if I was dying. Looking back on this day, I know I overreacted, but during that 30-minute time span, death truly felt like my reality.

After those 30 minutes, my symptoms subsided; still present, but less extreme. I was brought to a doctor’s office on campus and diagnosed with my first concussion. I was clueless to concussion protocol and recovery treatment. My biggest concern was when I would be able to play again, because we were in the middle of a record-breaking season. I had to go through a series of steps and tests before I was cleared to play. My concussion symptoms — that is, after the first day — were more annoying than they were painful. They would improve each day, and after two and half weeks, I was back playing on the court. Upon returning, I thought to myself, “I’m glad it was just a concussion, and not a bad sprain or break … otherwise I’d have to be out for way longer.”

Reflecting on that now, the naiveté of this statement sickens me, and I only wish I could go back in time to share what I know now with my ignorant freshman self.

The summer going into the 2017 volleyball season, I had never felt more on top of my game. I trained all summer and was in the best shape of my life. I played some of my highest level of volleyball, all while accomplishing one of my dreams of playing for the USA Collegiate National Team. After that I headed back to work camps at UNC and prepare for what looked like a promising season. Concussions were the last thing on my mind, partly because I knew I would never make the dumb decision of launching myself airborne towards a ball again.

During the last open gym of summer, our team was scrimmaging, and I called for a fast set to the pin. I saw a wide-open seam in the block and swung. At the last second, the middle pressed her hand into the seam. The ball instantly bounced off the block, into my face, and ricocheted back over the net. My neck snapped backwards in response to the initial hit, and I landed dazed. I felt a slight headache and dizziness, but I didn’t think much of it because I was not experiencing any of the severe symptoms that accompanied my first concussion. I continued to play the rest of practice.

After open gym, I let our trainer know that I got hit pretty hard and had a bit of headache, but nothing too concerning. She gave me some ibuprofen and told me to monitor how I was feeling in the following days. After Thursday’s practice, I went home and felt fine for the rest of the night. The next day I was a little groggy and slept a lot more than usual, but for the most part I still felt normal. I did not experience severe symptoms until Saturday morning — a day and a half after the initial impact. I woke up Saturday morning dizzy with an intense headache and nausea, accompanied with light and noise sensitivity. I called our trainer and she drove over. The symptoms progressively got worse and I began to projectile vomit.

The trainer rushed me to the ER to get a CT-scan of my head because of the sudden increase of symptoms, which is often an indication of a more serious problem, like a brain bleed. Thankfully, the scan came back clear, but the doctor confirmed I was yet again concussed. What I did not know at the time was that this concussion would change the course of my life.

I was released from the hospital and prescribed anti-nausea and headache medication. I laid in a dark room for two days, and when I wasn’t asleep, I was throwing up. Around day four, my symptoms started to progressively decline. I was under the assumption that just like my first concussion, I would go through the protocol and be back in no more than two weeks. Our 16-day preseason training was a week away, and I was determined to play in the season opener at the end of the month in Wisconsin.

After a week of resting, I started feeling more normal, but I noticed that certain things or activities would trigger certain symptoms, causing them to range from barely noticeable to unbearable pain.

I began feeling more and more frustrated because I was not getting better or progressing the way I did the first time around. The symptoms became more bearable but they never went away. I convinced myself I was feeling better by creating an excuse for each of my symptoms. I told myself the headaches were just normal headaches that everyone got, the exhaustion was from not getting enough sleep, and the oversleeping was because I was exhausted — an oxymoron, I know. I fibbed my way through concussion protocol, telling the trainers what they wanted to hear so I would be cleared to play. I was cleared two practices before we competed, and fully practiced in one of them before playing the following day. During warm-ups, I began to get a bad headache. I took a couple of ibuprofen and brushed it off like it was no big deal. During the game, I got hit in the head twice while blocking. I was only a little bit concerned because neither hit was significantly hard. I slept through the night and felt OK during the morning. We took a bus to the airport and flew back to Chapel Hill. That Monday, I knew deep down that I was in fact, not OK.

I attempted to practice, but less than halfway through, I completely broke down. I was sobbing uncontrollably, and my trainer took me to a quiet, dim-lit room. I bawled until there were no more tears left to cry. My trainer comforted me and helped calm me down. She assured me things would be alright. School started, and things started to go downhill — fast.

I realized on the first day of class I was unable to read more than a sentence or two. My eyes weren’t tracking properly. When I attempted to read anything longer than a sentence, all I saw were jumbled letters. My eyes didn’t know where to look. I went to see our team physician, and she told me I wouldn’t be traveling to Puerto Rico with the team the upcoming weekend so I could focus on recovery. I had been looking forward to that trip since the release of our schedule during the spring.

On Thursday, the day before the team left for Puerto Rico, I started feeling unlike anything I had ever experienced. I was scared.

My body started shaking uncontrollably and I began to vomit. Thankfully, my roommate and friend were home, so they quickly brought me to the emergency room. I was too weak to walk, convulsing, and continuously throwing up. The doctors ran different tests, which seemed to take hours, before figuring out my sodium levels had dropped to 119. Normal sodium levels are between 135-145. Sodium levels below the 120 range commonly cause seizures, comas, and even death. Research shows concussions and brain injuries can impair the pituitary gland which regulates sodium levels. The doctors were uncertain if this was caused by my concussion or another underlying factor. However, it’s important to know how wide the spectrum of issues from a concussion can be.

The doctors hooked me up to a saline IV and I was monitored throughout the night. My coach and some teammates stayed with me at the hospital until around 1 a.m., even though they had to wake up at 4:30 a.m. to catch their flight to Puerto Rico. Their presence was a necessary comfort I desperately needed during the scariest night of my life. I will always be incredibly thankful for my Carolina family and the selflessness that was shown to me that night.

After being released from the hospital, I focused on taking my recovery process one day at a time. I knew it was going to be anything but easy. It was like riding a roller coaster that I could not get off; there would be days where it would seem like I was getting better, but then I would wake up the next morning feeling worse than ever before. Healing from my concussion was anything but linear.

Arguably, I spent more time in various doctors’ offices than I did in my own apartment.

I remember making a joke to my coach at one point, saying I was a Division I doctor-goer, because while my teammates were doing 20-plus hours of training a week, I was at one of my never-ending appointments. During this year I cried more days than I didn’t, and prior to my concussions, I think I cried maybe two times total since starting college. I medically under-loaded my class schedule, and thankfully for the classes I was still enrolled in, the professors were accommodating and more than understanding.

What’s more, the concussion caused my pre-existing ADHD to heighten, so the classes I was still in seemed unnecessarily laborious. I was put in vision therapy for the entirety of the fall semester to retrain my eyes to track. I had to start wearing special glasses that spaced letters out and helped me to see better. My academic advisor would read me the assigned readings from class when I still couldn’t read for myself.

On top of vision problems, my heart rate was affected as well. Concussions commonly affect the autonomic nervous system, which regulates all sorts of bodily functions like heart rate. While laying down, my heart rate would be in the 50s, and upon sitting up it would jump to the 90s. When I would stand, it would go into the 120s, and walking put it in the 140s. A light jog would cause my heart rate to reach the 170s. The rapid variance in my heart rate would cause me to get light-headed every time I would stand. I had to wear a heart monitor for weeks. With this cardiovascular problem, I was unable do even the simplest of workouts.

One night, a few months after suffering my concussion, I caught a 24-hour bug that was traveling around the team. This sickness caused nausea and vomiting. I woke up feeling sick, so I walked to the bathroom feeling more light-headed than normal. When I was walking back to my room, I passed out — making a loud thud from hitting the back of my head on the tile floor of my apartment. I woke up to my concerned roommate frantically talking on the phone with my trainer, asking what to do. I was groggy and confused. I went to the hospital for my second CT scan of the year to make sure my skull was intact. Thankfully it was, but unfortunately, I was set back in the recovery process and three weeks of progress in vision therapy were erased.

When sustaining my concussion, I also got whiplash. Whiplash mirrors many of the same symptoms caused by a concussion. I had X-rays taken of my neck to gage the severity of the whiplash. To this day, I will never forget the phone call I received from my doctor saying, “don’t freak out, but there is a possibility you could potentially be acutely paralyzed. You would need spinal surgery to fix your neck. Further imaging needs to be taken in order to confirm this. The next possible appointment for a neck MRI is tomorrow at 2 p.m.”

Obviously, I freaked out, imagining the worst possible scenarios and crying on and off non-stop until my appointment the next day. I had to wait three days for the results of the MRI. As you could imagine, the time in between the appointment and when I received the results moved unbearably slow. I was praying non-stop and hoping for a miracle. The MRI results showed my C3 and C4 vertebrae were congenitally fused, meaning I would not become paralyzed and I would not need spinal surgery. However, my C1 vertebrae, also known as the “atlas,” was off by 9 mm. If the atlas is displaced by as little as 3 mm, you begin to notice various symptoms. So, I saw a chiropractor multiple times a week throughout the entirety of the year to fix the alignment of my spine. The curvature of my neck was significantly changed from the impact. It has never returned to what it once was, and I still see a chiropractor frequently.

Throughout the year, I had constant and debilitating headaches. I remember the worst of these was a migraine that I rushed to the doctor’s office for. I was put on an IV and laid in agony until the medicine numbed the pain. Most days felt like a battle, and constantly fighting against life left me worn out and exhausted. I began to see my personality change right before my eyes, and I felt helpless in salvaging the person I knew myself to be. I was unrecognizable to myself and felt like a shell of the person I once was. The mental aspect of having a concussion was by far the most challenging part. I was struggling with depression and anxiety of which I have never dealt with up until that point.

The simplicity of everyday things became dreadful.

Seeing friends while walking around campus became an emotionally taxing façade. Everything I once knew about myself was stripped away. I lost my joyful personality, my identity as a student, an athlete, and as a teammate. I felt like I was letting down the people in my life because I was not the same Julia and it was obvious. The people I was closest with stuck by my side and helped me get through this arduous time. Words cannot express my gratitude for the support system I was blessed with.

Though this chapter in my life was inconceivably hard, I would not go back and change what happened to me.

I learned how to have fortitude, resiliency, and complete trust in God when facing my life’s toughest battle. Before my concussion, I used to base my faith off my worldly circumstances. But now, I realize that no matter my situation, God is still good and a relationship with Jesus is more valuable and powerful than any of life’s circumstances. My faith grew tenfold and I grew more as a person in one year than the previous 18 years of life combined.

I have a new sense of perspective that allows me to look at life through a totally different lens. I believe that no life experience is ever wasted, and if my story is able to prevent or help someone going through a similar situation, then it’s all worth it. Awareness on concussions as well as how to perceive and deal with them is necessary. In my opinion, there isn’t nearly enough awareness on the severity of concussions, due to a lack of understanding and the ambiguity that accompanies this invisible injury. Steps, like the work CLF is doing, must be taken in order to generate further awareness, and I am hoping to contribute by sharing my story.

Upon being cleared and returning to the indoor court, nothing felt the same, and I knew the sport would never feel like it once did. Even though I was cleared to play, I was still struggling with the residual effects of post-concussion syndrome. Every time I stepped on the court, I was riddled with anxiety and plagued with fear. I never did get through a full practice of indoor volleyball again. I knew something needed to change, but I refused to give up athletics.

Around this time, I had begun playing beach volleyball with the UNC club team. Beach volleyball felt entirely different than indoors to me, and far safer. To this day, I have never felt the threat of getting another concussion while playing beach. The ball is a bit bigger and softer, and the game is played a lot differently — this is not to say that getting a concussion in beach couldn’t happen, but the chances of getting one are far slimmer. Plus, I always had a dream of playing beach volleyball professionally after college, even though I’ve never actually played the sport.

This was my opportunity to change my path and pursue a dream I wouldn’t have had enough courage to, had the concussion not made the familiar now unfamiliar. So, I emailed some beach volleyball programs, telling them my story and my interest in the sport. I visited some California schools before deciding on the University of Hawai’i.

My first year at Hawai’i was challenging, but in a far different way than the previous two years of dealing with concussions. I was pushed as an athlete in ways that I’ve never experienced before. I felt like a fish out of water playing beach volleyball. I honestly hated the sport in the beginning, mainly because of the difficult and uncomfortable transition process. Beach volleyball is a game of imperfections and I strive for perfection in my sport, so it was beyond frustrating to say the least. I made a promise with myself to stick with it, regardless of how I felt.

Once competition started, I began to fall in love with beach volleyball and the tiresome hours of unenjoyable work paid off. Just like the healing process of my concussions, my progression in the sport of beach volleyball resembled that of a roller coaster. Some days I would feel giddy with excitement, loving every moment of learning and growing, while other days left me questioning the belief I had in myself and the decision I made in changing my life course to pursue this sport. What got me through the challenging times was holding onto the days where everything felt right — like I was exactly where I was supposed to be.

The good days started to multiply, and the bad days began to diminish. I am now able to look back at the trials of these past two years with clarity, making sense of their importance in shaping my life’s path and purpose.

There is a quote I came across during the time of my concussion and one that I still hold near to my heart:

“Sometimes when you’re in a dark place you think you’ve been buried, but you’ve actually been planted.”

My concussion was a chapter in the story of my life, and because of it, I’ve been planted. Rooted in faith, I continue to grow towards my dreams.

July 2020:

If you were to tell me I’d be where I’m at today in the midst of recovering from my concussions, I would have called you a liar. I remember feeling like I would never see the light at the end of the tunnel and the life that I once knew would never be able to reconstruct. The lifeline that I clung to and relied on during those tough times was my faith. And faith the size of a mustard seed can move mountains. I firmly believe faith is the reason the seemingly insurmountable mountains in my life were overturned. It’s now been 3 years since my last major concussion. Today, I’ve never felt better physically or mentally, including prior to the head traumas — which is crazy to think! I am happier, healthier, and feel more like myself than ever before. Don’t get me wrong, I still have bad days, but most days I wake up excited for what lies ahead. I recently graduated with a BA in Communications from the University of Hawaii at Manoa with a 3.55 GPA (which was shocking because I’ve always struggled academically). I will be starting a graduate program in the Marshall School of Business at the University of Southern California in the fall. I will be competing for the Trojan’s on the beach volleyball team while using the remainder of my NCAA eligibility. I’ve fallen in love with beach volleyball and plan on pursuing this passion for as far as it will take me. I never in a million years could have orchestrated or picked a better path than I am on now. It’s obvious God’s sovereign hand has been shaping every step and detail of the way. I now think about life wildly different from my previous conceptions before my concussions and that is one of the biggest blessings that came from this hardship. I will always take the lessons I’ve learned during these past few years with me wherever I may go next.

Are you or someone you know struggling with lingering concussion symptoms? We support patients and families through the CLF HelpLine, which provides personalized help to those struggling with the outcomes of brain injury. If you are seeking guidance on how to choose the right doctor, find educational resources, or have any other specific questions, we want to hear from you. Submit your request to the CLF HelpLine and a dedicated member of the Concussion Legacy Foundation team will be happy to assist you.

Out of the Darkness: The Noah Abrams Story

Posted: June 17, 2020

My family members filed into the house, one after another, greeting each other with hugs and smiles. The house was loud, filled with laughter and conversation between cousins catching up, grandparents checking in and siblings making fun of each other. My family gathered around the Thanksgiving table to celebrate the privilege of being in one place together and enjoy each other’s company.

But I couldn’t.

The sounds of their laughter pierced my ears. The thud of their footsteps vibrated my skull. The clanking of forks and knives resembled nails on a chalkboard. The only thing that I could do to escape this, my family, the thing that means the most to me in life, was to curl up in bed in a dark room, holding my head in my hands. These were the moments where my mind went places where I wish they never went. For the first time in my life the idea of killing myself seemed liked a better alternative to living life in constant suffering. I cried. Uncontrollably. Thinking about all that felt so far away from me now. My friends, my soccer career, my education, my family. I was told that feeling more emotional and sad was part of Post-Concussion Syndrome, but nothing could have prepared me for what I was actually going to experience.

I’m the kind of person who is always in a genuinely great mood. I couldn’t turn off a smile if I tried. I’m always making jokes. It’s a part of me that I really love, something that truly defines me. But in this moment, it felt like every smile, every laugh and every joke was the biggest lie. For months, I tried to put on this façade that I was still the same Noah I had always been – believe me, I tried – but after my vision went black on that field, my life was turned upside down.

The actual play happened so quickly. Having watched the video replay hundreds of times since the injury, it’s hard to figure out what I actually remember and what I think I remember. My teammates who were closest to the play describe my head being whipped back like someone hitting a bobblehead. After the initial contact occurred, they recall blood gushing out the top of my head, seeping into the Parsons turf. An Elon player ran full speed into me and the only way his speed was reduced was his knee slamming into my skull.

Being significantly undersized and lacking God-given athleticism and speed for a D1 goalkeeper has led me to develop an aggressive playing style, always wearing my heart on my sleeve and making decisions without fear. When that bouncing ball came in, I didn’t have to think twice about coming out for a play that even many goalies at the highest level would avoid. That bouncing ball was the last thing I saw before I woke up to the blurry faces of my trainer and teammate standing over me and saying my name.

“I’m fine, I’m fine,” I drastically slurred as I felt a surging need to vomit. “I’m fine, let me up.”

Clearly, we weren’t on the same page and I was forced to stay on the floor and told to relax for a second. Eventually, my trainer and coach helped me over to the bench where I had an examination and told the trainer to stitch me up for the second half of the game.

A few minutes later, I passed out again for about 15 seconds, woke up, touched my trainer’s arm and said, “Get me to a hospital. Now.”

These last six months since my concussion have been an extremely volatile and dark time for me emotionally. I always thought that people who went through hard times emotionally were soft or ungrateful. How could a person with such a great life have anything to complain about?

As my symptoms progressed, I felt like I lived in a state of hangover. I was constantly nauseous, dizzy and had a headache. I couldn’t hang out with my teammates in our living room because the combination of their voices and the TV was too much to handle. I wasn’t able to watch my team play the remaining 12 games of the season because the lights on the field and the music in the locker room felt like I was being tortured. I wasn’t able to attend class because when I thought about more than one thing at once my brain simply hurt. But the physical symptoms had a source. I knew my head hurt because I was kicked and had 18 staples. It was the anxiety and the depression that I couldn’t understand. It was the fact that I would wake up every morning with a pit in my stomach and an overwhelming sense of doom that I just could not understand. The worst part about it all was the fact this was not a visible injury. It wasn’t like a broken arm that I could see. That could be proven with x-rays, that the doctor can put into a cast and tell me how long it will take to heal.

There is no rehab. There is no clear diagnosis. There is no timeline. The only thing that I could do was sit in dark rooms and cry about everything that was taken away from me, from my sport to my identity. The only time that I felt some relief from the constant suffering was when I drank.

At least for a couple hours, my headache disappeared, and I forgot that I was in constant pain. After a night of drinking and my hangover state returned the following morning, I returned back to my regular thought process: If I jump over my fifth-story fire escape, will all my pain and suffering go away?

I never got that close to the fire escape, but even having those fleeting thoughts is scary enough. But when I experienced these dark thoughts and moments of suffering, I later realized the good in what it brought out in me. Prior to this injury, soccer was my main priority in life. What happened to me on that field and in the six months that followed was the worst thing that’s ever happened to me, but also the best. Having so much time away from the game changed my point of view. Feeling constantly anxious and depressed altered my perspective. I realized that life isn’t always about what is directly in front of me. I stopped thinking like soccer was my end-all, be-all, my sole purpose, and my only source of happiness, and I started treating it like a passion that filled me but did not define me.

There is no shame in admitting that sometimes things get so hard you can’t handle it on your own. If anyone reading this is going through a rough period in their life, sport related or not, I encourage you to seek help from your loved ones, because some things in life are too difficult to take on by yourself. Without my close friends, my teammates, my family and my coaching staff supporting me, I don’t think that I would be here today. That doesn’t make you soft or ungrateful, but it makes you human.

If I could take it back, I wouldn’t have gone out for that ball, but I will always be grateful for what the time since that injury has taught me and how it has changed me.


Suicide is preventable and help is available. If you are concerned that someone in your life may be suicidal, the five #BeThe1To steps are simple actions anyone can take to help someone in crisis. If you are struggling to cope and would like some emotional support, call the 988 Suicide & Crisis Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call. If you’re not comfortable talking on the phone, consider using the Lifeline Crisis Chat.

Team Up Against Concussions in Ireland

Posted: June 11, 2020

Could you tell us a little bit about yourself?

My name is Oisín Joyce and I am currently a Ph.D. student at Trinity College Dublin, Ireland in the area of sports concussion and traumatic brain injury. The current focus of my research is to investigate the utility, reliability and validity of an objective test of multi-sensory integration in the hopes it would aid in the diagnosis, prognosis and recovery following a concussive incident. When I was a child, I always wanted to be a superhero and try to help people. Although my hope of acquiring superpowers remains, with age comes perspective and a degree of realism. So, for now the cape and cowl have been substituted for science and research. My interest in concussion began during my undergraduate degree in Health and Performance Science in UCD, where I received a lecture on the physiology and management of concussion from a Ph.D. student who is now a very good friend of mine. I became captivated with the science and implications surrounding concussions, not only from sporting scenarios but also a clinical standpoint. It is fascinating how much we know and yet how little we understand at the molecular level and the underlying pathology associated with concussion. It was that lecture that was the catalyst to undertake my master’s degree in Neuroscience at Trinity College Dublin and conduct a research project in the area of sports concussion.

Why did you want to get involved with CLF?

Following on from my master’s degree I worked as a research assistant II in Boston Children’s Hospital and as a research associate in Brigham and Women’s Hospital in Boston for a year. There, I investigated novel therapeutic targets for the treatment of concussion through small molecule arrays, alongside the development of objective and diagnostic tools for the identification of concussion and CTE in both a clinical and sports setting through animal models. Throughout my research and reading I began to get a sense that there was a lack of sound and understandable scientific information being translated to the general public and sporting bodies, and I wanted to try and reach out to my local communities back in Ireland and develop an educational outreach program alongside my doctoral studies. It was during this time in Boston that I came across CLF. I reached out wanting to get involved as an ambassador and work with them in Ireland to educate student-athletes about concussions through discussion, video, and interactive games, teaching them that successful athletes play hard and play smart.

How have those presentations gone?

I have had great success since my return to Ireland as a CLF ambassador with my educational outreach. I became a tutor for Scholars Ireland of AccessEd NGO at Trinity College. It is here that I have paired my work with CLF to provide a seven-week course discussing the basics of the brain, the science of concussion and appropriate management, and the definition of CTE. So far, I have undertaken this course with two secondary schools. Additionally, I have presented to multiple crowds of approximately 100 teenage students during health and wellness week and further talked to them about career paths in neuroscience. From these talks I had the heads of the schools come to me asking for me to talk to individual sports teams and specifically to the faculty regarding the appropriate return to education guidelines and rehabilitation management.

What has the response been like to the presentations from students and faculty?

I have received excellent responses from both students and faculty from the presentations I have given so far. They seem to really appreciate the talk and find it very informative. Many were unaware how many career paths are available in the realm of concussion research and neuroscience; they found the talk fascinating and the students got loads out of it. One administrator told me, “The students who attended the presentation were telling the other students about it which is probably the best compliment I can give you!”

What are the biggest misconceptions people have about concussions before the presentations?

Throughout all my presentations I make a point to debunk some common myths surrounding concussion. The one that comes up time and time again is that people believe concussions only happen when you get a hit to the head, but a look of surprise comes over their faces when I tell them concussions can also occur when you get a hit anywhere on the body and the resulting force is transmitted to the head causing a concussion. Furthermore, many people believe concussions only happen in contact and combat based sports, which is not true. It is true some high-speed sports or contact sports may possess a higher risk of concussion than others. But concussions can happen at any place, any time. On the pitch or on the running track. On the playground or when riding a bike or merely a slip or fall!

This can be somewhat frightening for some audience members. To address these concerns, I always conclude each presentation by asking the audience if we should be afraid of concussions. The answer is always no, we should not. There is a lot of talk as to whether parents no longer think sports are safe for their children to engage in due to the potential risk that they may suffer a concussion. But I personally think sport is one of the most purposeful and foundational activities that a child can engage in for several reasons. The first being exercise. From iPads to iPhones, PlayStations and Xboxes, the number of handheld and gaming devices out there now is overwhelming. But equally the number of devices and platforms out there almost equals the number of sports available to children. Too much screen time and lack of exercise is contributing to an unhealthy and sedentary lifestyle.

Rather than holding kids out of sports for fear of concussion, the most important thing is to make sure kids are playing sports as safely as possible. That means minimizing the amount of head impacts kids are taking and making sure any potential concussion receives proper medical care.

What is your favorite part of the Team Up Against Concussions presentations?

The active engagement with the audience. I love getting volunteers up early in the presentation to help me demonstrate the signs and symptoms of concussion. It’s always fun to see volunteers demonstrate what it is like to have blurry vision following a concussion and how that affects their perception of their surroundings.

What inspires you to keep going and do more presentations?

Knowing that for every time that I do one presentation it provides me with a larger platform to disseminate the most up to date and translatable concussion facts. One presentation leads me to another and another and before I know it I have presented to over a thousand students and faculty, all of which will have the appropriate knowledge to identify and understand the signs and symptoms respectively and act in a way that will reduce the time spent in recovery and return to both sport and education in the safest and shortest amount of time possible.

What’s next for you?

In the future I aim to continue my educational outreach with CLF alongside my doctoral studies in hopes of reaching a larger audience that will hopefully facilitate change in some aspects of sporting law across the country of Ireland. I also hope the current research I am conducting will create a more versatile and alternative approach to concussion diagnostics that accounts for the underlying pathology of the injury correlating with representative signs and symptoms.

If you’re interested in bringing concussion education to your community via the Team Up Against Concussions curriculum like Oisin, reach out to CLF’s Special Programs Manager Dan Molloy at dmolloy@concussionfoundation.org for more information.

From Punches to Poems: Alan Blyweiss’ Story

Posted: May 11, 2020

Alan Blyweiss started boxing in 1976 as a seven-year-old in the Baltimore/D.C. area. He was 88-12 as an amateur. His amateur career included a fight against former heavyweight champ Tommy Morrison to a four-round loss that turned into a blood bath. Growing up where he did, he was able to spar up-and-comers like Hasim Rahman, Riddick Bowe, and Mike Tyson. At 20-years-old, he was told he shouldn’t box anymore due to a spinal disc fusion. His professional career was over after just two fights. Nicknamed “The Rock,” Blyweiss became a sparring partner for some of the biggest names in boxing like Vincent Bolware, Lennox Lewis, Terry Ray, and Larry Holmes. Without much of an education, Blyweiss felt his only means were to be the punching bags for some of the most powerful punchers in the world.

A life in boxing left a toll on Blyweiss’ body and brain. He has had his spine caged, complete elbow reconstruction on his left arm, Tommy John on his right elbow, numerous hand surgeries, broken noses, and procedures to remove cartilage. He also sustained numerous concussions and blackouts in sparring sessions.

Blyweiss felt for a long time that something was wrong with his brain. He exhibited behaviors and personality changes that alarmed his wife and children. He lost control of his inhibitions, suffered from confusion, had bouts of rage, and severely lowered executive functioning abilities. Doctor after doctor couldn’t give him an answer for his issues until a 2017 visit to Johns Hopkins University. There, doctors told Alan they suspect he lives with what was used to be called “punch drunk” syndrome, and what we now know as Chronic Traumatic Encephalopathy (CTE).

Living with suspected CTE has placed a tremendous burden on Blyweiss’ family. His wife had previous experience as a caregiver for dementia patients and now supports Blyweiss in his daily bout against the symptoms of the degenerative brain disease. Despite everything, Blyweiss’ fighting instinct still persists. To combat his suspected CTE, Blyweiss turned to poetry.

He writes whenever inspiration strikes with the purpose of compiling a set of poems to share with other patients and families affected by CTE.

“There is no schedule with my disease,” Blyweiss said. “Every day is a new adventure. But I’ll keep on trying and never give up.”

See below for a collection of Alan Blyweiss’ many poems. You can connect with him at ablyweiss@gmail.com.

CTE Warriors

Man hands hurt so bad from all the years of fighting, have to get through it so I can keep writing.

This disease that has no clock, not knowing when to tick or to tock.

We can not express our pain or feelings through a normal voice, our bad language comes out it was not our choice.

Our paranoia and depression can get very insane, to be sitting around hearing people calling our name.

I will be using my time to continue to rhyme, because this disease will rob us of time.

But if you don’t like something you hear, just remember your not in the shoes that we wear and we really don’t care.

These words our for my brothers and sisters fighting this disease, because if you’re the patient or the caregivers this will drop us to our knees.

But for the time I can still create a voice for us, then it will be me to steer this bus.

So if you read these poems and it helps in some small way than I did something to help CTE warriors today.

The Rock

I once was The Rock, our family power. That was before my brain began to turn sour.

I was a husband and dad, that made it all great. Now every day I have to start with a clean slate.

The things I say and the things I do, often to get a reaction from you….

I go for the jugular, knock you out at the knees, the words that I say only come from CTE.

Now I can’t make decisions or take care of the money, the things happening so quick it’s not even funny.

I put my words down, while I can understand, these words come from my brain, right into my hand.

My hands now express the thoughts and feelings we all go through, where this will lead us, we haven’t a clue.

This disease has no cure, but one thing I can say for sure, with the things that we go through in a day, and still can’t find our way.

To be caught between the stage truth or fiction, causes my brain causes so much friction. So for my warriors without a voice- keep battling the demon like you have no choice.

We may not win this fight, but I’m fighting for the future CTE-ers that just might.

Don’t Give Up On Us

Please don’t give up on us for we know not what we say, please don’t give up, we will forget by the end of the day.

Please don’t give up on us, we know not what we do, please don’t give up , we are just as scared too.

Please don’t give up on us, are care is so tough, please don’t give up, no matter how rough.

Please don’t give up on us, CTE is a disease, please don’t give up, till the beast is on its knees.

My CTE Day

I have a few ideas what I’d like to get done for the day, give it 20 minutes and I forget it anyway.

Pressure in the eyeballs feeling like they want to pop, nothing can help nothing can make it stop.

Then the ocean sounds I have in one ear, the buzz in the other sounds so clear.

I get mean in my mind when I’m in noisy places, wanted to make the noise stop by smashing people’s faces.

Then the paranoias that I go through in a night, hearing the voices then throwing punches like I’m in a fight.

My wife has to wake me because I’m punching my face, I see her fear and I’m not in the right place. I can’t say words nothing coming out the fear so deep but I cannot shout.

Caring for us

Caring for us is challenging, stressful and comes with no reward. It’s our actions and words that strike at your chord.

We behave and believe things that we never have before, our feelings are slipping, our tears are no more, being depressed feeling like we’re under the floor

Our caregivers need a break, but nobody wants to help, can’t find caregivers who understand CTE on Yelp. Not a friend nor a family member, nobody in sight. To get anybody to help is always a fight

We are so mean and hurtful like a devil towards you, but if other people were around, they would think it’s crazy, has to be you! But what they don’t know behind a closed door, we treat you worse because we love you more

It’s our caretakers that take such a strained assault , but to live like we do is nobody’s fault , so don’t be mad at we say or don’t do, because it’s the disease that’s stopped loving you.

If

If I am trying to do something you don’t understand, don’t try to stop me lend me a hand.

If I’m speaking and have some troubles, please don’t correct me it just bursts my bubbles.

Please don’t tell me how great I look. If you only knew the pain I’m in, I could write a book.

If I just blast out with a very inappropriate comment, just shake it off and live in the moment.

If I’m looking confused, there’s nothing you can do. But when I am amused, there is no worry of a fuse.

So being stuck between understanding my fate at one minute of the day, then in the next seconds I can’t remember what to say.

Now as I really am seeing the reactions from my wife and see her fear, it’s only making one thing clear, that if I don’t fight harder my ending is near.

Living with PCS While Social Distancing

Posted: April 6, 2020

At a time when social distancing and periods of isolation have become a widespread obstacle in the daily life of so many, Gracie Hussey of Memphis, TN is an expert on how to cope.

Gracie sustained her first concussion when she was just 8 years old and went on to suffer several additional concussions throughout her competitive youth soccer career. As she transitioned from middle school to high school, Gracie attempted to hide and fight through worsening Post-Concussion Syndrome symptoms. She suffered from headaches, sensitivity to light, sensitivity to smell, memory issues, and vision difficulties that interfered with her schoolwork and daily life. Eventually, Gracie’s symptoms became so severe she was forced to homeschool for a semester in 10th grade.

Now a college student at the University of Alabama, Gracie was told not to return to campus after spring break to help stop the spread of Coronavirus. For CLF’s webinar, Managing PCS in the Time of Coronavirus, Gracie shared her perspective on living through new social distancing measures and how the experience is similar to periods of inactivity and isolation she dealt with when her PCS symptoms were at their worst. One of the best strategies, Gracie says, is keeping a routine and taking breaks:

“Staying active and trying to keep my routine as normal as possible, even though I’m not allowed to go anywhere besides walking around my neighborhood and working out, has honestly been my savior because I haven’t gotten into the cycle of just lying in a dark room because my head hurts.”

Like so many forced to stay home from school or work, Gracie was concerned the PCS symptoms she’d worked to keep in check would make a comeback. The knowledge that she has conquered her symptoms through discipline, routine, and exercise countless times in the past helps Gracie remain hopeful.

Gracie has been an advocate for concussion safety with the Concussion Legacy Foundation since 2015. Below, Gracie shares her story for the Concussion Legacy Foundation’s Safer Soccer campaign.

#WhyCLF | The People Behind Our Cause

Posted: January 21, 2020

“Before the headaches and concussions, he was very much an extrovert, he always had a group of people around him and just loved life and had a lot of fun.”

Mike Raarup says concussions changed his son Kyle’s personality. He became impulsive, and struggled with drastic, volatile mood swings. Kyle was a gifted hockey, football and baseball player in Minnesota. Concussions forced him to quit sports in 8th grade – and he was later diagnosed with Post-Concussion Syndrome (PCS). Treatments helped Kyle graduate high school and attend college, but he still suffered from anxiety, depression and memory loss. He took his own life at age 20 in November 2015.

Kyle’s brain was later studied at the VA-BU-CLF Brain Bank, where researchers diagnosed with him Stage 1 (of 4) CTE. Mike is proud to have donated his son’s brain to research and supports our cause in his honor. It’s his “Why CLF”.

Dr. Ann McKee is leading the global effort to find a cure for CTE with her groundbreaking research. When we asked her why she persists in this work, her answer was simple.

Dr. McKee is the Chief of Neuropathology at the VA Boston Healthcare System and Director of the Boston University CTE Center and the VA-BU-CLF Brain Bank. In 2018, she was named one of TIME Magazine’s 100 most influential people. Dr. McKee’s work has revolutionized the world’s understanding of CTE and changed the way we think about head trauma in sports and the military. Our future is brighter because of her work.

“He taught all of us life lessons, differently, yet all the same principles. He was our coach in many ways and was very much our hero.”

Julé Frechette’s #WhyCLF is for her father John Frechette, who she calls the warmest, kindest, most giving person and best dad to her and her two siblings. John was an offensive and defensive tackle for Boston College before being drafted in 1965 by the Boston Patriots where he played for a season. Frechette also spent a year with the Green Bay Packers playing for legendary coach Vince Lombardi. After a shoulder injury in 1967 ended his football career, he went on to have a successful business career working in labor relations. Signs of memory issues and mood swings began in his mid-50’s and continued to progress. Julé says as her father’s disease progressed, his sadness, frustration and inability to think clearly became more profound and caused him to withdraw and lose his “life of the party” personality.    Frechette was diagnosed with Alzheimer’s Disease in his late 60’s and died in 2014 at age 71. Researchers at the VA-BU-CLF Brain Bank later diagnosed him with Stage 4 (of 4) CTE.

“The differences came very strongly and very loudly after the last time he played football.”

Diana Brett’s son Daniel stopped playing football after a concussion during a high school practice his freshman season. Then she learned he suffered nearly a dozen of concussions before that – and hid his symptoms so he could keep playing. Daniel was diagnosed with Post-Concussion Syndrome (PCS) and struggled with pain for the next 19 months of his life. In May 2011 he died by suicide at age 16.

Diana is passionate about educating all athletes to speak up about their concussions. She’s also empowering parents to be advocates for their children’s health so they know what to look out for when it comes to concussions. It’s her #WhyCLF.

Payton Mincey’s #WhyCLF is for her dad Daniel Brabham.

Daniel was an Air Force veteran, teacher, family man and an all-conference linebacker and fullback at the University of Arkansas before spending six seasons in the NFL with the Houston Oilers and Cincinnati Bengals. Brabham was a lifelong crusader for change. He fought to ban smoking in the workplace in Louisiana and founded the Louisiana Fisherman’s Forum. After his death in 2011 at age 69, researchers at the VA-BU-CLF Brain Bank diagnosed him with CTE.

Tough, kind, and larger than life. An All-American football player for Boston College who spent three seasons in the NFL – Pat Frechette’s #WhyCLF is for her husband John David Frechette.

John was an offensive and defensive tackle who was drafted by the Boston Patriots in 1965. A shoulder injury ended his NFL career early, and he transitioned to life as a father of three working in labor relations. In his late 40’s, John started showing signs of depression, memory loss, and mood swings. In 2011 he was officially diagnosed with Alzheimer’s Disease. He died three years later at age 71. The Frechette family says they donated John’s brain to the VA-BU-CLF Brain Bank to learn more about how to make the game John loved safer. Researchers at the Brain Bank diagnosed Frechette with Stage 4 (of 4) CTE.

“Everybody loved Austin. He had such an energetic personality and was able to make friends wherever he went.”

Michelle Trenum’s #WhyCLF is for her son Austin. Austin Trenum was a star student and athlete who played football and lacrosse at Brentsville District High School in Virginia. Austin suffered his first diagnosed concussion during his junior football season. A year later in September 2010, he suffered his second diagnosed concussion during a game. Austin took his own life 43 hours later. He was 17 years old. Michelle and her husband Gil donated Austin’s brain to the VA-BU-CLF Brain Bank to help advance research about the link between concussions and suicide. They now honor Austin’s legacy by supporting other families who have lost a child to suicide after concussion.

Why is Dr. Jesse Mez so passionate about his work? For his patients.

Dr. Mez is an important member of both the BU CTE Center and BU Alzheimer’s Disease Center research teams. He’s also an Assistant Professor of Neurology at Boston University School of Medicine. Dr. Mez is part of the team that interviews family members and caregivers of Legacy Donors to learn more about their lives and the symptoms they struggled with. His research is helping identify possible risk factors for CTE. Dr. Mez was the lead author on an October 2019 study that found the odds of developing CTE increase 30% for each year of tackle football played.

Quiet, deep, and strong – Joslyn Aitken remembers her son Devin Hands for his caring heart. He’s her #WhyCLF.

Devin grew up in Laguna Beach, CA where he excelled in every sport he played. He started tackle football at age 12 and cherished the “Tough as Nails” award he received for taking so many big hits. Devin loved the outdoors and worked hard to earn the prestigious Eagle Scout rank. Beginning around age 17, Devin struggled with headaches and mood swings. He died of a brain hemorrhage from a fall in 2013 at age 22. Joslyn donated his brain to the VA-BU-CLF Brain Bank to help advance research about concussions.

“My favorite thing about him was his gentleness. They called him a Minnesota Monster on the football field, but he had a second side, a soft side, that I loved.”

Carolyn Lens says her #WhyCLF is for her sweetheart, her husband of 25 years, Greg Lens.

Greg Lens was a star defensive tackle at Trinity University before being drafted into the NFL in 1971. He played two seasons for the Atlanta Falcons. Lens also served in the U.S. Army, and went on to be a high school teacher and coach in Texas, a job his family said meant so much to him. Near the last decade of his life, Carolyn says she started to notice changes in Greg. He forgot directions to places he’d traveled to hundreds of times. He struggled to tell time. Then the paranoia set in – and Greg battled bouts of aggression and rage. Unable to stay at home, Greg moved in and out of several care facilities during the last years of his life. He died from pneumonia in 2009 at age 64.

Researchers at the VA-BU-CLF Brain Bank later diagnosed Lens with Stage 4 (of 4) CTE.

Our co-founder and CEO Christopher Nowinski, Ph.D has endless answers for #WhyCLF.

Nowinski was a two-time All-Ivy defensive tackle for Harvard before wrestling in the WWE. His WWE career was cut short after a kick to the head led to Post-Concussion Syndrome (PCS). Nowinski recognized the desperate need for athletes to understand the serious consequences of concussion, and teamed up with his physician Dr. Robert Cantu to co-found CLF. He’s also a co-founder of the Boston University CTE Center and is driving us toward achieving our vision of a world without CTE and concussion safety without compromise.

 

Bunny Brabham’s #WhyCLF is for her late husband Daniel Brabham.

Daniel was an all-conference linebacker and fullback at the University of Arkansas before spending six seasons in the NFL with the Houston Oilers and Cincinnati Bengals. Brabham also served in the US Air Force Reserves and was a high school chemistry and math teacher. A lifelong change agent, Daniel fought to ban smoking in the workplace in Louisiana and founded the Louisiana Fisherman’s Forum. After his death in 2011 at age 69, researchers at the VA-BU-CLF Brain Bank diagnosed him with CTE.

 

“He went from playing soccer every day, jogging every day, riding his bike, to being completely paralyzed.”

Patrick Grange loved soccer. Everything about it. His mom Michele says he was a natural athlete who was coordinated even as a toddler. He started heading soccer balls for hours on end when he was three years old. A star athlete in high school, Pat continued his soccer career in college playing for the University of Illinois at Chicago and the University of New Mexico. He also took his talents to a semi-pro team in Chicago. Michele says he suffered several concussions throughout his career. Then at age 28, he felt weak and knew something was wrong. He was diagnosed with ALS shortly after. Patrick Grange passed away 17 months later. Researchers at the VA-BU-CLF Brain Bank later diagnosed Pat as the first former soccer player with #CTE.

Michelle says Pat was a humble, quiet kid, who courageously went public with his ALS diagnosis to help raise awareness for the disease. Now Michelle and her husband Mike honor Pat by sharing his story and advocating to remove repetitive head trauma from youth sports. It’s Michelle’s powerful #WhyCLF.

“He brought smiles to everybody’s faces and was a real inspirational guy who never met a stranger. Just an overall great dad.”

Sarah Naylor’s #WhyCLF is for her father Greg Lens. Lens was a star defensive tackle at Trinity University before being drafted into the NFL in 1971, where he played two seasons for the Atlanta Falcons. Lens also served in the U.S. Army, and went on to be a high school teacher and coach in Texas. Sarah says she first started noticing changes in his behavior when she would come home for breaks in college. He became forgetful and more reserved. Then the mood swings kicked in. By the last year of his life, Sarah recalls him as “the shell of emptiness.” Greg Lens died from pneumonia in 2009 at age 64 and was later diagnosed with Stage 4 (of 4) CTE at the VA-BU-CLF Brain Bank.

Dr. Thor Stein is dedicated to his work researching CTE so his sons will have a safer future.

Dr. Stein is a neuropathologist at the VA Boston Healthcare System and assistant professor of pathology and laboratory medicine at the Boston University School of Medicine. He is a part of the Neuropathology Core of the VA-BU-CLF Brain Bank, where he analyzes the brain tissue of CLF Legacy Donors. The work of Dr. Stein and his colleagues is essential to what we do at CLF. Each new diagnosis furthers our understanding of concussion, CTE, and the effects of neurodegenerative brain diseases.

Scott Gilchrist’s #WhyCLF is for his dad Carlton Chester “Cookie” Gilchrist, who started experiencing behavioral symptoms around age 35. Cookie was known for his power and speed as a record-setting running back in the Canadian Football League and American Football League. Gilchrist won two AFL MVP awards playing for the Buffalo Bills in the 1960’s. After his football playing days ended, Cookie turned to a career in business. At home, Scott says the simplest things could make his father upset. He struggled with paranoia, impulse control, and became very reclusive. In the last year of his life he struggled with severe memory, judgement and problem-solving difficulties. He died in January 2011 at age 75. VA-BU-CLF Brain Bank researchers later diagnosed him with Stage 4 (of 4) CTE.

Scott says now that he has a better understanding of the disease, he has more respect and compassion for what his dad was going through, especially at such a young age.

“Dice was a man who believed that everyone he met held the potential to be his friend.”

Elizabeth Allardice’s #WhyCLF is in memory of her late husband Robert” Dice” Allardice.

Born in 1947, Dice was a football player, wrestler, and boxer at West Point – The US Military Academy. In just one week playing at West Point, Dice suffered three concussions and week later, a broken neck. In 2006, Dice began showing bizarre behavior and struggled with cognitive issues. Those issues progressed over the next eight years before his death in November 2014. He was later diagnosed with Stage 3 (of 4) CTE at the VA-BU-CLF Brain Bank.

Michael Alosco, Ph.D. works to provide hope for those who may be living with CTE.

Dr. Alosco is a neuropsychologist and Assistant Professor of Neurology at the BU School of Medicine, where he also serves as the Co-Director of the BU Alzheimer’s Disease Center Clinical Core. His career has been devoted to investigating the risk factors and biomarkers of neurodegenerative diseases like CTE and Alzheimer’s, to help find ways to treat and eventually cure them. He works with the clinical research team at the Boston University CTE Center to learn from Legacy Donor families about their loved one’s history of head trauma, and the symptoms they experienced. This clinical report is presented alongside the pathological findings when the researchers inform families whether or not their loved one had CTE or any other abnormalities in their brain.

 

“He was not the person that we knew and loved. The disease took away his passions and his joy for life.”

Patty Pae was one of the caretakers for her father as he struggled with the debilitating symptoms of CTE for nearly the last decade of his life. The pain and suffering she saw him endure sparked her drive to help others experiencing the same with a loved one. It’s her #WhyCLF.

Patty’s father Dick Proebstle was a quarterback for Michigan State University’s football team in the 1960’s. Concussion-related issues forced him to stop playing after his junior year season. Proebstle went on to have a career in business before symptoms of CTE took over. In the last 20 years of his life he battled aggression, depression, paranoia, anxiety, along with failing executive functioning and speech. He died in 2012 at age 69. Researchers at the VA-BU-CLF Brain Bank later diagnosed him with CTE.

 

“It was exhausting because you didn’t know which Kyle you were going to get. It’s just sad seeing your son change and be so sad.”

Beth Raarup’s #WhyCLF is for her son Kyle – who she saw struggle with mood swings and depression after a series of concussions at a young age. Kyle Raarup was a sports fanatic who loved playing hockey, football and baseball. Beth says Kyle was a happy kid who was always full of energy, before concussions forced him to quit sports in 8th grade. He was later diagnosed with Post-Concussion Syndrome (PCS). Treatments helped Kyle graduate high school and attend college, but he continued to suffer from anxiety, depression and memory loss. Kyle took his own life in November 2015 at age 20. His brain was later studied at the VA-BU-CLF Brain Bank, where researchers diagnosed with him Stage 1 (of 4) CTE.

After Kyle passed away Beth and her husband Mike discovered Kyle liked to use the phrase ELE, or Everybody Loves Everybody, to promote a message of kindness. They say they are proud to honor his legacy of helping others by raising awareness about concussions and CTE.

Mary Hawkins’ #WhyCLF is for her late husband Ross “Rip” Hawkins.

Rip was drafted in the second round of the 1961 NFL Draft by the inaugural Minnesota Vikings team. After making the 1963 Pro Bowl, he retired from football in 1965 to pursue a law degree. He served the Assistant District Attorney for Fulton County, GA and coached high school football in Colorado and Wyoming. He retired to ranch in Wyoming and later became the Wyoming Department of Transportation commissioner and a local municipal judge. Late in life, Rip presented symptoms of Lewy Body Dementia. Researchers at the VA-BU-CLF Brain Bank diagnosed him with Stage 4 (of 4) CTE after his death in 2015 at age 76.

“When he was 28 something went wrong. He came to me and said, you know what, I have no power in me. I can’t run, I can’t push off from my feet, I have no power. I’m weak.”

Mike Grange’s son Patrick was diagnosed with ALS at age 28 and passed away 17 months later. Patrick Grange loved the game of soccer. He started heading balls at age three and suffered several concussions during his successful playing career at the University of Illinois at Chicago, the University of New Mexico, and for a semi-pro team in Chicago. During the last year of his life, Pat courageously went public with his diagnosis to help raise awareness for ALS.

After his death, the Grange family donated Pat’s brain to the VA-BU-CLF Brain Bank. He later became the first former soccer player to be diagnosed with #CTE. When you ask Mike Grange #WhyCLF, he says to honor Pat. Mike now advocates to make youth sports safer, so other kids don’t endure repetitive head trauma.

“Jeff was an amazing man. When he walked into a room people would stop and stare. He had an infectious laugh, and was just one of the most kind, loving men I had ever met.”

Brandi Winans’ #WhyCLF is for the love of her life, her late husband Jeff Winans.

Jeff was a star athlete growing up in Turlock, California and accomplished his dream of earning a scholarship to play football at the University of Southern California. Jeff won a national championship for the Trojans in 1973 and went on to play six seasons in the NFL. After football, Jeff became a champion for several local causes in Tampa Bay. But headaches, depression, emotional, and cognitive issues affected his decision making, temper, and memory before his death in December 2012. He was later diagnosed with Stage 3 (of 4) CTE at the VA-BU-CLF Brain Bank.

Gil Trenum is dedicated to our cause for his late son Austin Trenum. It’s his #WhyCLF.

Austin played linebacker and fullback as a senior on the Brentsville District High School varsity football team in Virginia. He was a star student who was beloved by his classmates for his vibrant personality. Austin suffered his second diagnosed concussion during a football game in September 2010. He took his life 43 hours later. He was 17 years old. Gil and his wife Michelle donated Austin’s brain to the VA-BU-CLF Brain Bank to help advance research about the link between concussions and suicide. They now honor Austin’s legacy by supporting other families who have lost a child to suicide after concussion.

Lisa McHale became our Director of Legacy Family Relations after her husband, former NFL lineman Tom McHale, died tragically of an accidental drug overdose in 2008. Tom later became one of the first former football players to be diagnosed with CTE at the VA-BU-CLF Brain Bank. In her role, Lisa is the liaison between brain donor families and the research teams, guiding families through every step of the donation and diagnosis process.

Lisa’s #WhyCLF is for Tom and the incredible role he played in helping the world understand the long-term effects of repetitive head trauma.

You can read Tom McHale’s Legacy story here.

Born On Super Bowl Sunday: Darren Leins’ Story

Posted: November 19, 2019

I grew up around the game of football. I was born on Super Bowl Sunday in 1973.  My father was a high school football coach in Michigan and the game was a major component of my life from an early age; it was a part of my identity. There are pictures of me as a baby with a football helmet on my head and a football in my lap.  As I grew up, I played pickup games of “touch” football in the streets with friends and tackle football in the parks (no pads). Starting in 6th grade through 8th grade we were able to sign up and play organized flag football. At that time, there was not a tackle football program in my hometown for kids younger than high school age. I was a locker room rat and a fixture at high school football practices and games from the second grade on. My story is a bit different from most of those you will find if you do an internet search on football and CTE. I did not play tackle football until freshman year of high school. I was not involved in any organized tackle football program in my early youth, as so many former players were. In retrospect, I feel fortunate to have been limited in my exposure to tackle football in my youth.

I was afforded the insider view of high school football in southwestern Michigan because of my dad’s position as a coach. All I ever wanted to do was play football no matter the weather conditions or time of year. Growing up I felt football was my destiny, what I was meant to do, who I was meant to be. To say I loved the game of football would be an understatement. I dreamed of the day I would play high school football for my dad’s team, of the day I would sign a letter of intent to play in college, of the day I would play football in college and of the days I would be drafted and start my career in the NFL. That is a dream many young men have. As we all come to understand, dreams like that don’t always come to pass for a variety of reasons.

The majority of the head trauma I experienced came from playing football during high school and college. I was a starter on both offense and defense throughout high school. Most of the colleges who showed interest in me were Division II schools. It had been my dream to play Division I college football. I was honored the coaching staff at Central Michigan University saw enough in me that they believed I may be able to play at the Division I level. I went to Central Michigan in 1991 as a preferred walk-on, meaning I was not given an athletic scholarship to play football. I would be paying for tuition, room/board and books like any other student on campus, but I saw this as opportunity to achieve one of my life’s dreams and hoped I could earn a scholarship.

I played safety and spent my first year as a redshirt on the defensive scout team. My goal was to play as much in practice as possible. While I was not as fast as many of my teammates in the defensive secondary I was—to paraphrase several of my former coaches—a “hitter.” Hitting in football always came easy for me.  I was taught from an early age to see what you hit, to put your nose on what you hit. If you do that, the risk of neck injuries by compression is lessened. That was always my thought process, see what you hit and go and hit that person as hard as you possibly can. This mentality served me well throughout college and in my development as a player. I started to get playing time in games during my redshirt sophomore year which continued during my redshirt junior year.

I became a special-teams player and saw some game action in the secondary, but it was typically end of game play. My special-teams play included kick off, punt and punt return teams. I’m outlining this because I believe there may be someone out there who can relate to my story. I may not have started for my college team, but my passion in college was the game.  I was involved in every practice in the fall and spring with that team. I hit every day we practiced with helmets and shells, with some exceptions due to regulations.

Throughout my high school and college playing careers I had my “bell rung” on multiple occasions. I know now these were likely concussions of varying degrees. This never stopped me from continuing to practice and/or play the game I loved. Toughness and determination were attributes which allowed me to push through. The way I tackled, essentially leading with my face (not the crown of my head) resulted in multiple sub-concussive impacts each practice. This lasted from August until November for 8 years. This also included practices in the months of March and April for three years while I was in college.  My football career ended in 1994. I did not play professionally, nor was I involved in any semi-pro or amateur leagues. I have had no trauma to my head in the years since I finished playing.

Unsettling changes

After college, my life seemed to move along well. I met and married my former wife while at CMU. The best men in my wedding were my fellow teammates, my best friends. The university welcomed me back in 1997 as a graduate assistant coach working with the football team. I was engaged to be married on the campus of CMU. You see, many milestone events and lifelong relationships are the result of making the decision to play football at CMU. This is part of the complicated relationship I have with the game. Afterwards, life moved along like it does for the majority of former college football players—without football.

As is the case with many things, I was not the person who first noticed changes to my personality. It was my wife at the time who saw subtle changes in me become more noticeable and not so subtle.

These included the following:

  • irritability/low frustration tolerance
  • aggressive behavior
  • anxiety (which I never had prior)
  • involuntary tics
  • tremors in my left hand
  • difficulty understanding conversation
  • cognitive changes
  • difficulty integrating information
  • difficulty paying attention
  • sound sensitivity
  • language difficulties
  • mood swings

These symptoms slowly became part of my personality. My wife at the time raised her concerns to me in the fall of 2016. This was shortly after our second separation. Some of the reasons for the separation were my aggressive, angry, erratic behavior, irritability and mood swings. She told me she was afraid I was showing signs of CTE. I will admit that at first, I didn’t buy into what she was telling me.

I balked at her suggestion for a couple of months and thought the symptom patterns she pointed to were coincidental. But something happened as I sat alone at night with my thoughts. I noticed some things I had attributed to coincidence may not be at all. I was not able to always understand people when they were talking to me—I could hear their voice but not understand any of their words. At times, when speaking, I was unable to find the words I wanted to use. I was angry more often about insignificant things and I noticed big mood swings. There were times I had to leave and try and get in a quiet environment because any sounds, even a whisper, felt like a pick into my brain. I remembered I had been having problems with dropping items out of my left hand, and my left hand would show signs of tremors at various times. These symptoms became a part of who I was so gradually that it was hard for me to notice. I had been coping with them and living with them, but in retrospect these symptoms became my new normal over the previous 4-5 years.

At first, I didn’t believe my wife. Then, I didn’t believe myself. I thought it was all in my head. But educating myself on CTE, current research, and stories from others experiencing similar symptoms has helped me understand that what I am experiencing may not be coincidence. CTE is real, there is ample evidence to back it up, and it may be the cause of my symptoms. I am constantly looking at the research and my symptoms to remind myself that what I am going through is legitimate and what other people are going through is legitimate and there is support out there.

As I stated earlier, many of the best things in my life were the result of making the decision to play football at CMU. The game of football has always been a part of who I am. That is why I now have such a complicated relationship with the game I grew up loving. I don’t know how prevalent CTE is among former players, that is not my role in this story. I simply know these symptoms, which are consistent with those of CTE, are my reality.

What my symptoms are like

Imagine blinding pain and the feeling that an ice pick is being driven into your brain, and the cause is your friend at the front of the church speaking in a “normal” tone. The pain in your head is so bad you can’t understand the words and must excuse yourself and leave the service. You become aware of intermittent tremors in your left hand; a type of feedback you’d never experienced before. You observe difficulty with fine motor skills, such as picking things up with that hand, and create rationalizations as you drop things out of the same hand (something you have never done) while not truly understanding the underlying reason.

Now imagine irritability. Not just normal grumpiness, but explosive anger at people you love, strangers, and situations in general. It doesn’t occur in dramatic situations where a lot of emotion may reasonably be expected, they are normal, everyday life situations.

Imagine stuttering and stammering, being unable to find the appropriate words when speaking. You feel frustrated by speech and communication, once a cornerstone of your personality, and watch it erode to something that is no longer a strength. Add forgetfulness—not being able to recall what you were speaking about and details about recent interactions. Wondering whether you performed a task you were going to do or if you still need to do it.

Any one of these symptoms may not mean a lot standing on their own. They are symptoms millions of people encounter as they move through the various phases of life. When these symptoms are experienced together or with a multitude of other symptoms, as happened to me, it may be evidence of a bigger issue. I was left angry, confused and numb. I couldn’t comprehend what was happening to me, I wasn’t able to put the pieces together. I needed help and after that I needed hope, which is why I am sharing my experiences. If I can be that hope for someone else, it is worth being vulnerable.

Managing my symptoms

Once I accepted what I was experiencing was tangible and real, the next task was finding treatment. This task loomed large and initially seemed quite daunting.  I was fortunate that I was referred to a doctor by my wife at the time who wanted to treat me and help. Currently there is no cure for CTE. It is classified as a neurodegenerative disease. Physicians are able to treat various symptoms to slow their progression, but not the underlying disease. I have searched and tried various treatments that have provided various levels of relief from the symptoms.

These include meditation, physical activity, a diet high in plant-based nutrition (my diet does include some meat), neurofeedback, infrared laser treatments and putting a safety net in place. The treatments seem to vary in their efficacy. I have not been able to figure out the reason for this, but I will continue to study, track, and educate myself on what works for me.

The point I want to make is that there is help out there. Even if it is just treating your symptoms. There is help available from caring physicians and support groups who want to help you manage your condition. Keep looking for those special folks who embrace this challenge and are not cowed by it.

The importance of a support network

This path seemed solitary for much of the first year. I felt it was a journey I would need to take alone. I could not have been more wrong. When I was a player I thrived in the atmosphere of the team, the comradery of the team. This fight for myself and the thousands out there like me has to be done the same way. We have to be there for each other, even if that is all we have.  I have embraced this attitude and feel fortunate to have people in my life who want to understand and are willing to travel this journey to provide support.

The week my then wife approached me with her concerns regarding my symptoms, Rashaan Salaam, former Heisman Trophy winner from the University of Colorado, died by suicide on a park bench in Boulder, Colorado. The news affected me deeply. It happened approximately 40 miles from where I was living at the time. I did not know Rashaan, though we were playing college football in the same era and living in the Denver, CO area. I do not know what was going on in his life or what events led him to make the choice he made. We do not know if he had CTE (Rashaan’s brain was not studied because of religious reasons) but it was reported family and friends said he displayed symptoms of CTE. I am not able to speak to his experience firsthand, but I do know that when what you are experiencing is validated by people in your life there is a peace in feeling like someone understands what you are going through. I hope that whatever else was happening in his life, he found that peace.

That thought continued to play in my mind as I decided whether to write this story down. I was initially reluctant to tell it. There are only a very small number of people who know what I am experiencing. I have been very private about it for many reasons, including not wanting to worry family members or think of what the future may look like with them. One of my biggest fears was that I was somehow letting down my former teammates and coaches, including my late father. I was afraid they may see me sharing my story as an attack on them, our team, our family and the game we all loved so much. This is in no way an attack, but rather a call for us to support each other.

My life has changed over the last several years since I started to recognize the symptoms that have become a part of my life. I am no longer married and there are times when things are a struggle, when treatments don’t seem to be working and I just want my old self back. These are the times that I have to force myself to lean on those close to me. It is in those times that I make sure I fall back on my faith in God, my beliefs, and the support and safety net of loved ones I have put in place. I will tell you that my life is better than it has been in recent years because I have made the decision to live mindfully, daily. I am blessed that I am able to fight. I am blessed because there are people in my life who try to understand what is going on and are there for me.

Embracing hope

The growing knowledge about CTE and the experience of others gives me a sense of peace. I don’t have to question whether what I am experiencing is quantifiable to fight it. I will tell you these symptoms, be they CTE or something else, will be battled until the very end, whenever that may be.  I am not defeated but instead facing this challenge head on. A wise man once told me that you shouldn’t be afraid of a diagnosis, what a diagnosis allows you to do is to make a plan to effectively treat and fight the cause of that diagnosis.

There are times of loneliness and that is when we need our family, friends and brothers. Though we may not have played for the same team in the past, we are on the same team now. We need to be there for each other, to support each other and to help each other in these battles. The fight against TBI, CTE and those symptoms consistent with CTE has gotten much larger than my privacy and any fear I may have had of being negatively labeled.

Maybe you love someone who is going through similar experiences. My hope is that my story provides some level of insight. Maybe you are the one experiencing similar symptoms, that you are feeling lost, confused, angry and defeated. If so, please know that you are not alone and there is help. These symptoms do not define you. They are not the end of your story. They are simply one more part of your journey, a journey that does not have to be taken alone. If there is one person out there in this world who sees and relates to my experience it has been a worthy cause.

Coping with Probable CTE: Steve Miller’s Story

Posted: February 1, 2021

My husband and I celebrated our 46th anniversary on June 1st, 2019. It was a celebration filled with many memories of our lives together that, sadly, only one of us can grasp.

My husband Steve suffers from what doctors tell us is a probable diagnosis of the degenerative brain disease Chronic Traumatic Encephalopathy (CTE). When we were married 46 years ago, we began our lives together as minister and wife. We pastored churches in Maine, New York, Tennessee, and Pennsylvania until he retired in 2016. At that time, we had no idea what was causing his myriad of debilitating and bizarre symptoms.

Steve grew up not far from New York City and was heavily involved in sports. He found solace in competition as an outlet where he could excel and receive the recognition he longed for. He was a gifted gymnast and played baseball and basketball; but his greatest love was football. He started playing his freshman year of high school and continued all four years in positions for which he was totally unqualified. He was 5’9″ and barely reached 140 pounds. Nonetheless, he played everything from lineman to quarterback with the drive of a professional athlete at the top of his game. During that time, he had five concussions bad enough to take him out of games.

He may have suffered several others that went undiagnosed because he played through them. We’ll never know. What we do know is that Steve never missed a single game in those four years, playing for a team that only lost once during his career. Looking back, we realize that means Steve took thousands of potentially damaging hits to the head during his high school career, including one that even broke his helmet in a game. It wasn’t until years later we discovered, from tests showing evidence of trauma, he must have fractured his skull from the hit.

Steve was offered an athletic scholarship to play football at a small college but, in a decision that seems more like a miracle now, he opted to train for ministry at a bible college instead. It was there where Steve and I met back in 1971. After college, we settled in upstate New York so he could continue his career as a pastor. Steve missed playing sports, though, and decided to try out for a semi-pro football team near Albany. He made the team, but my gut told me it was a bad decision, and I pushed back. At the time I didn’t know much about brain trauma, but now I’m incredibly thankful I put my foot down.

Throughout our marriage Steve sustained 15 more concussions that we could document, most of which were caused by recreational basketball. One was from a bad fall down the stairs, another happened during a car accident, and one of the most severe was when he took a line-drive softball to the temple. It seemed to become easier and easier for him to get a concussion even with a relatively light hit. The very last one occurred when he hit his head on the bottom of a table and lost consciousness.

Steve’s present condition did not come on quickly but was more of a slow decline with so many symptoms that did not seem related at the time. He has been treated for depression since 1996 and probably should have started that treatment sooner. He began having migraines around that time. He began drinking regularly and showed other signs of poor judgment and became very impulsive. He would occasionally have memory blackouts where he couldn’t recall where he had been or what he had done. We didn’t mention any of these symptoms to our doctor, though, because they weren’t happening on a regular basis.

In 2000 we moved to Pennsylvania. Steve’s drinking and blackouts became more frequent. We left ministry entirely after he spent a week in a psychiatric hospital followed by a 14-day stay in a rehab facility.

No longer a pastor, Steve struggled to find a place of employment. He found work with the county human service department as a caseworker and then with the probation department as a juvenile probation officer. In 2009 we took up church ministry again and kept at it until 2016 when he finally decided he could no longer manage the responsibility. There were times when Steve would go blank in the pulpit and forget what he was supposed to say and do.

During that time, he also started studying to get a master’s degree in counseling and planned to open a practice after he retired. He had to give that up just short of graduating because the cognitive demands of the studies became too much to handle. He later received a counseling certificate in the hopes of gaining traction again.

In 2016, we moved to our current home to be near our daughter and family. Steve picked up part-time work as a drug counselor. Ordinarily this would have been a good fit if he had been healthy in body and mind, but it instead became an opportunity for him to become involved in drugs himself. His use of crack cocaine and heroin went on for about six weeks. He nearly died before I tracked down what was going on. By then I knew our world was falling apart and he had totally lost control.

What followed was two stays in a residential rehab center and one suicide attempt. We made a trip back to the neurologist who was treating him for migraines. He did more testing and finally came out with the probable diagnosis of Chronic Traumatic Encephalopathy (CTE). I was floored. For one thing, I had no idea exactly what it meant regarding a prognosis. Could CTE be treated or cured? As we talked to the doctor it became clear it was most likely the root of Steve’s problems for years, but we didn’t realize it.

This doctor was the first to ask us to write down Steve’s concussion history, dating all the way back to high school. It was like the light came on in a very dark room and we could see the pieces come together.

The doctor then put together a drug regimen to treat Steve’s various symptoms, especially the depression. We also went to a psychiatrist who was able to tweak the drugs a little more and address the hallucinations and insomnia. Steve is also diabetic, has high blood pressure, and restless leg syndrome. We are blessed to have a general practitioner who has treated Steve for years for the more common issues but was quick to educate himself about CTE to support the specialist’s directions.

It was around this time I had to face what Steve’s illness had done to our finances. There were loans and lines of credit I wasn’t aware of and the credit cards were maxed out. Then I discovered he had been selling the few valuable things we owned. I got him to sign a power of attorney over to me so I could deal with the finances without his input. It was quickly apparent that bankruptcy was the only way to save the house and get rid of the debt.

Even with good insurance the medical bills started piling up. That was when I went to the Office of Aging here in Pennsylvania and sought help. Since we are both on social security and I only work part-time, we easily qualified for Medicaid. I had to swallow my pride and accept any assistance that was available. Thanks to this assistance, we now have a nursing aide who will stay with Steve while I work to ease the burden on family members who are assisting as well.

Dealing with this disease is a daily journey and I’ve learned each day will be different. He may feel like going for a walk one day, but the next he will barely move or speak. At any given time, he may lose speech, sight, leg function, memory, voice, or appetite. He may forget where he is, forget a person, forget the day of the week, the time, or who has died in his past. He becomes belligerent but not violent and lacks emotion but is still suicidal. The most difficult part is coping with the brief moments of normalcy, where Steve is coherent and can understand he is ill and knows he will only get worse. It’s a constant battle of one step forward and three steps back.

We are both sustained by a circle of faithful friends and our faith in a God who still cares and watches over us. We will continue to move forward and deal with each day as it presents.

We know there are many other families struggling to care for a loved one with possible CTE. We’re praying for them to receive God’s grace to sustain them during difficult times.