College Teammates Launch Concussion Awareness 5K

Posted: March 16, 2021 

Courtney Spitzer’s story

Gymnastics became increasingly more difficult on my body as I grew older. By my 20s, many skills felt different, including my Jaeger—a skill on the uneven bars in which a gymnast starts in a handstand, swings forward, releases the bar, flips, and catches it again. If she misses, it’s a 10-foot fall to her stomach. By my senior year of college, I repeatedly fell off the bar multiple times a day, whiplashing my neck with each impact.

By November 2017, I was not feeling right. I had sustained two fairly serious concussions the previous year, so I was familiar with the symptoms. This experience was similar, but I remembered no specific impact, and neither I, nor my doctor, attributed this to a brain injury. For the next five months, I was sent from one physician to another as my extreme fatigue, headache, and nausea persisted, interspersed with confusing symptoms like low blood pressure and GI issues. No one could pinpoint the problem, until one day, my doctor, fresh from new training on concussion treatment, walked me through a series of tests which I failed miserably. I was diagnosed with Post-Concussion Syndrome (PCS) and referred to vision and vestibular therapy. At this point, there were only two months left in the school year, and I had missed the entirety of my 20th, and final, year of gymnastics.

Because of the understanding and flexibility of my professors, I successfully graduated from Cornell University in May and moved back to San Diego, having improved significantly, but without fully completing my treatment. Two weeks later, I was rear-ended. I reverted to my disoriented, nauseous and emotionally volatile state. Worst of all, I felt like my personality was gone. After weeks of little progress but plenty of fear, a cancellation gave me an appointment at UCSD’s concussion clinic. In addition to vestibular and vision therapy, I began a regimented return to physical activity and slowly took-up running. My balance and normal vision returned; my nausea, fatigue, and headaches decreased; and I finally felt more like myself.

When I was given an opportunity to work under a researcher at Harvard Medical School a few months later, I moved to Boston. My proximity to medicine and history of concussions influenced my decision to pursue a medical degree, so I enrolled in night classes and began studying for the MCAT. This overexerted my brain, and my fatigue returned, my headaches increased, and I felt my functioning slipping. I was referred to the concussion clinic at BU, and again, started vestibular therapy, a regimented exercise routine, osteopathic manipulation to help with neck pain, and acupuncture to relieve sharp pains emanating into the base of my skull.

Since this final visit to BU in 2019, I now feel like my normal self. I usually live symptom-free, but some days still experience headaches and brain fog. I’ve learned how to manage, when to take it easy, and when a run will likely relieve persistent fogginess. I understand how daunting the PCS healing process can be and the intense frustration of setbacks, but I take solace in knowing that my experiences have directed my goals. For anyone struggling with PCS, I hope you can find peace in your resilience and feel confident that one day you’ll feel like yourself again.

Lauren Wong’s story

As a senior in high school, college gymnastics seemed like an exciting next step in my athletic career. I was ready to take on the NCAA and planned to compete all four years as a consistent member in the Cornell University lineup. However, that all changed in January 2015 during my freshman year. I was at practice when I was on the floor performing a round-off back handspring double pike when I over-rotated the landing and smacked the back of my head on the floor as I rolled backwards. Initially, I felt fine and was adamant that I could continue with practice despite our trainer’s concerns. As the day progressed, I started to feel more and more out of it. My balance felt off, I was seeing double, and I was having major difficulty concentrating. After another hour or so, I was crying for no reason and complaining of head pain and the bright lights aggravating me. Another few hours passed and I wasn’t able to walk without assistance. My memory is still extremely fuzzy on the rest of the day’s events. I was out for the rest of the season and had to drop all but one of my classes. Recovery was extremely slow, and I didn’t start to feel like myself again until the summer.

By fall of sophomore year, I was feeling back to my old self after months of rest and recovery. Unfortunately, I suffered three more concussions throughout my collegiate career; one each academic year. Although each concussion decreased in severity, my Post-Concussion Syndrome (PCS) worsened, and after my third concussion, I began having visual problems and could not see properly. I started vision therapy and received special glasses to wear while studying. However, I wasn’t able to continue treatment due to travel difficulties and balancing therapy while still taking a full course of classes and gymnastics practice.

In 2018, I graduated from Cornell University and returned home to Los Angeles, California. I was still suffering from constant headaches, fatigue, and adverse reactions to blinking lights so I sought out treatment again. I figured being in LA with so many great universities and sports teams in the area it would be easy to find a doctor who understood my symptoms and could provide me with the appropriate treatment. Unfortunately, I was wrong. I went to my primary care physician and even a concussion clinic from a well-renowned university hospital. Both doctors told me that it was impossible for me to still have symptoms from my concussions and that I simply suffered from migraines. They gave me various medications and sent me home. These medications obviously were ineffective, and I was feeling utterly defeated; crazy that I was still having symptoms, frustrated that no one believed what I was saying, and hopeless that I would ever feel relief from my symptoms.

Fortunately, I have a great support system of friends and family that believe my symptoms and that I can get better. Because of their support and by hearing other’s concussion stories, I am motivated again to start finding treatment for my PCS. I currently still suffer from many symptoms but am searching for new treatments available near me and am hopeful that I will return to my normal self! I have learned it’s never too late to start looking for treatment and you are not alone. There is an amazing community here that believes in you and supports you so don’t give up and keep on moving forward one day at a time!

Why we created the Resilient Minds 5K

Our concussion histories led us to create the Resilient Minds 5K for the Concussion Legacy Foundation, as we believe in their mission to support vital research, connect patients with necessary care, and highlight individuals’ stories to provide hope for those currently experiencing this debilitating injury.

Please join us for the Resilient Minds 5K or support us by donating to CLF!

Phil Green’s Fearless Fight Against ALS

Posted: November 25, 2020

As a kicker on the University of Washington football team, Phil Green was 6-foot-3 and 225 pounds. He was bench pressing 360 pounds, squatting 500, and could jump with the guys on the basketball team.

In his late 40s, Phil Green suddenly could no longer clip his own fingernails. The strength in his hands was nearly gone.

“That was the first thing that told me something is definitely not right here,” Green said.


With his dad in the Air Force, Phil Green moved around a lot as a kid. At each new stop, Green’s athleticism made him new friends and carried him through unfamiliar circumstances. It didn’t matter if the field was in Washington, California, Alaska, or elsewhere, Phil Green turned heads wherever – and in whatever – sport he played.

Green chose to attend the University of Washington. In his first term at UW, Green played intramural sports and dominated flag football and soccer games.

When he arrived on campus, Green says he was around 165 pounds. But he hit the gym. And he ate. A lot. Green’s parents reloaded his meal card three times in his first three months in Seattle. He beat the usual freshman 15 by 25 pounds.

Green met fellow UW student Jarrett Mentink through his fraternity. The two played intramural sports together and Mentink saw potential for Green to do more than just embarrass the recreational competition. He encouraged Green to try out for the UW football team as a kicker ahead of his sophomore year. Green worked some connections and landed a tryout. Before he knew it, he was standing on the sideline as a walk-on for the Huskies as they won the 1992 Rose Bowl and shared the National Championship.

Green continued eating and lifting to the point where his size and athleticism were wasted at kicker. He moved positions and became the backup safety on UW’s 1993 Rose Bowl team.

Green was firmly entrenched behind star players and rarely saw live game action. But there was still enough practice time to take plenty of wallops.

“Every day in practice you’d try and knock each other silly,” Green said. “Today, you’d sit out. Back then, you’d rub dirt on it and get back in there.”

 

Green graduated from UW in 1993, but his late bloom made him dream of the possibility of playing professional sports. He moved to Massachusetts and tried out for the upstart New England Revolution MLS team. Despite not having played a game of college soccer, Green made the final round of cuts before being sent home.

After a few years playing in a Portuguese American soccer league on the south coast of Massachusetts, Green decided to enter the ranks in the business sector. He joined a small startup company in Arizona before a former boss recruited Green to work with her at Sony. Just as Green ascended from intramural leagues to the Pac-10, he went from a tiny company to interacting with Sony’s top executives in a sales role.

“I took a fearless approach,” Green said. “If you don’t know something, just fake it till you make it.”

Green made it. He thrived with Sony and moved back to the Seattle area around 2005 so he and his first wife could take their kids to Husky games.

In early 2018, Green’s second wife Jennifer noticed Green’s triceps were twitching. Green was totally unaware anything was wrong. The twitching soon spread to other parts of his body, causing concern.

Cutting out coffee didn’t help Green’s twitching. Neither did cutting alcohol.

The twitching intensified and spread further. When Green lost the pinch strength to clip his fingernails, he began to resign himself to the direst cause left on the table.

On August 29, 2018, Green’s suspicions were confirmed. He was diagnosed with ALS, a relentless neurodegenerative disease that attacks nerve cells in the brain and spinal cord.

Facing ALS with anything but fearlessness would betray who Green had been his whole life. Once he was diagnosed, he couldn’t feel sorry for himself. It was time to get to work.

“The official diagnosis gives you the ability to move on,” Green said. “It enabled me to make a difference and see what I could do while I still could.”

Green’s first step was to connect with someone else with ALS. His old friend Jarrett Mentink had a younger brother who played for the Washington State University baseball team alongside Steve Gleason. Gleason, the famed former New Orleans Saints safety, was diagnosed with ALS in 2011 and has since founded Team Gleason, an organization that improves the lives of people with ALS. Green messaged Gleason and was soon catapulted into the world of ALS advocacy.

In addition to Gleason, Green was connected to Brian Wallach, founder of I AM ALS. He became close friends with Nancy and John Frates, parents of the late Pete Frates. Frates played college baseball and was diagnosed with ALS in 2011 and died in 2019 at age 34. He created the Ice Bucket Challenge to raise money for ALS research. In a twist of fate, Green participated in the Ice Bucket Challenge in 2014, four years before his own diagnosis with ALS.

“I don’t know how I would have been able to get through this without having those connections,” Green said.

Among his extensive list of ALS advocacy efforts, Green is the co-chair for the clinical trials committee for I AM ALS and works tirelessly to reform clinical ALS trials to be more patient-friendly and increase funding so those with ALS can access them. Green says that 30,000 people live with ALS and less than 1,000 qualify for clinical trials each year. He was in a trial last year that seems to have slowed the progression of his ALS.

“The experimental therapies that are in clinical trials are really our only shot at hope,” Green said.

ALS strikes fast and hard. He and Jennifer enjoyed their belated honeymoon in Jamaica in April 2019. At that time, Green could still walk on his own, snorkel, and get in a boat. Now, 18 months later, Green is in a wheelchair most of the day, save for maybe five feet of walking in a walker.

But Phil Green is restricted only in mobility. The same fearlessness that got him onto the UW football team, on the brink of an MLS roster, and into board rooms with global executives stays with him now.

“I have no problem asking for things,” Green said.

Green’s days are filled with phone calls. He recently had a call with Apple’s director of accessibility to encourage the company to create products that work for the ALS community so those with ALS can choose between Windows and Mac. He learned early on that the top ALS doctors in the world were receptive to what he had to say as an ALS patient.

In his hunt for information from the medical community, he connected with Dr. Ann McKee, Director of the VA-BU-CLF Brain Bank. After former NFL fullback Kevin Turner died in 2016 at age 46 with symptoms of ALS, Dr. McKee found Turner’s brain had Chronic Traumatic Encephalopathy (CTE). She became the first researcher to report on the association between ALS and CTE.

“This is the best circumstantial evidence we will ever get that (Turner’s) ALS type of motor neuron disease is caused by CTE,” Dr. McKee said after Turner’s diagnosis.

Green never had a diagnosed concussion but remembers having his “bell rung” many times playing at UW and throughout his soccer career. In 2010, Green stopped heading the ball in pickup soccer games because he’d get blurred vision, headaches, and nausea after games.

Dr. McKee connected Green with her collaborator Dr. Gil Rabinovici, the Edward Fein and Pearl Landrith Endowed Professor in Memory & Aging at UCSF. Dr. Rabinovici has studied Green since his diagnosis. Green will be donating his brain to Dr. Rabinovici and UCSF after death to close the loop on the research process.

“I’m committed to helping answer those questions,” Green said. “Anything that I can do to help the science and understanding of both ALS and TBI from soccer and football.”

Green’s ALS is known as “sporadic ALS,” meaning he has no family history of the disease. This sporadic ALS could be caused by CTE, but there are many other potential sources. Green’s history of intense physical activity is also a risk factor. So is a lack of sleep.

Green’s family won’t know if he has CTE until after his death, but he has clarity now that the sports he played need to reform to protect the next generation.

He is a proponent of Flag Football Under 14 and knows many of his former UW teammates share the same opinion. He held his oldest son out of youth tackle football.

“It was important for my kid to understand the game and not how hard to hit people,” Green said. “Tackling is just one small piece of the game.”

As a kid, Green would toss a soccer ball onto his roof practice heading the ball as it fell over and over again. Now he’s glad heading is banned for his youngest daughter’s soccer league.

“It’s like sending your ten-year-old into a boxing ring,” Green said. “That’s probably not the best thing for the developing brain.”

Green knows what he’s up against in his fight with ALS. He has lost many friends to the disease and knows the odds that he beats ALS are extremely slim. But Green, who has never cared about odds, has two sets of goals. One for the rest of his lifetime and another for the future of ALS medicine.

In the short-term, he continues fighting for expanded access trials and patient-centered reforms to ALS care. Both, he thinks, are imminent.

Down the road, Green and the rest of the ALS community hope researchers discover the mechanisms and gene mutations that cause sporadic ALS. With a better understanding of why someone has ALS, researchers can develop more targeted therapies to slow the progression of the disease.

Green will continue fighting with as much as he can give for as long as he can give. Telling his story is another way to fight.


If you’d like to support Phil Green and his family’s fight against ALS, you can support him at PhilYourHeart.org. Green also partnered with Wilson Creek Winery in Temecula, California to release three special Philanthropic wines. Proceeds from the sale of either his cabernet sauvignonsparkling brut, or the cab/brut bundle go directly to the Phil Your Heart trust.

Spreading Inspiration through #ConcussionHope

Posted: August 6, 2020 

Hope helps us keep going through our toughest challenges. Hope is the belief that there can be a better future, and it inspires us to take action. Hope helps reduce depression and improve mental health.

Hope is a crucial component of recovery for people struggling with symptoms of concussion and Post-Concussion Syndrome (PCS). Hope can also be contagious. Our #ConcussionHope campaign provides members of the brain injury community with messages of hope, inspiration, support, and helpful tips from people who have recovered or are currently recovering from a concussion. Each Monday, we post a new Hope video to our Instagram (@concussionfoundation) and Twitter (@ConcussionLF) pages. Follow us there to never miss a new video!

If you’re struggling with the effects of concussion and need connections to resources, treatment options, or support, please submit a request to the CLF HelpLine.

Below, you’ll find some of the examples of Hope videos posted to our Instagram:

 

Noelle Foley’s PCS Roller Coaster Ride

Posted: August 5, 2020

Concussion. A word I don’t want to say for the rest of my life. But that’s just not the case, because I’m about to say “concussion” a whole lot in this story. I wouldn’t wish a concussion on my worst enemy… well maybe my WORST, worst enemy…

So how did I get my concussion? It was September 2019. Yes, September, as in nine months ago! I went to a theme park I’ve never been to with the intent of having a jolly ole time, but unfortunately it didn’t end up that way. After having a few snacks and riding some rides, my boyfriend Frank and I decided to go on this interesting looking roller coaster. It looked different, but I didn’t think much of it. I looked at the safety warnings, and they were no different than any other roller coaster I’ve been on.

We got on the roller coaster, strapped in, got the over the shoulders seat secured, and the ride began. The coaster started out normally and went up for the drop. It dropped, and immediately went directly back up and BOOM my head and neck thrash back causing my head to hit VERY hard against the headrest. I felt an immediate blow to my skull, with an intense sense of pain right away. I wanted to get off the ride immediately, but unfortunately this was only the beginning. The whiplash motion happened a few more times, each time my head slamming against the headrest. After the last drop, which was the highest drop of all, the roller coaster took a few rough upside-down turns, slamming my head even more, and at the last loop, we remained upside down for a few seconds. Fun, right?

So, the ride finally came to an end, and I got off and immediately felt like a huge bag of sh%t! I was nauseous, dizzy, and obviously in a ton of pain. I took a seat to rest for a while. I put ice cubes on my head, neck, and body to kind of wake myself up (I didn’t pass out, I just felt extreme fatigue like I wanted to go to sleep). It never occurred to me this could possibly be a concussion. I had never had a concussion before so it didn’t cross my mind that a roller coaster could cause a brain injury.

Frank took this picture moments after I hit my head:

This picture where I look sad, angry, and in pain is exactly how I was feeling. And yes, those are tears forming in my eyes. To be honest, I don’t remember much of the day after this. The next day, Frank and I had plans to fly out to LA to film a quick project. I woke up that morning feeling like absolute crap, but we stuck with our plans because I thought the pain would pass. On our ride to the airport, I felt extremely nauseous, like I was about to throw up. I honestly thought I was feeling this way because I ate junk food the day before, but looking back, I was clearly feeling nauseous because I had a brain injury.

Days went by, and I still had a horrible headache. Weeks passed, I still had a horrible headache. A month went by, and surprise, I still had a horrible headache. It wasn’t until my older brother, Dewey, told me I could possibly have a concussion. At this point, about a month after my head injury, it still never crossed my mind that I could even possibly have a concussion. When I think of suffering a concussion, I think of being in a car accident or being punched in the face or getting knocked out or being thrown off a Hell in a Cell… not riding a roller coaster. I’ve been riding the biggest, tallest, most intense roller coasters across the country since I was in first grade (yes, I was tall enough even at 6 years old). Over the past 20 years I’ve ridden hundreds, if not thousands, of roller coasters and I have never had any type of issue or injury.

Right after Dewey told me about the possibility of a concussion, I did a simple Google search and it turned out I had almost every single symptom of a concussion. I finally got an appointment to get my head checked out. Right away, the doctor confirmed it was a concussion and ordered physical therapy sessions and also ordered an X-ray of my neck because the doctor could feel my neck was very stiff. The X-ray came back that the cervical spine in my neck was curved backwards, most likely as a result of the whiplash of the roller coaster.

I can count on one hand how many times I’ve driven at night in the past nine months. And when I’m in the car at night, with someone else driving, I have to wear sunglasses and completely cover my face with a jacket, blanket, or hat. As far as sounds, it feels like I have the hearing of an owl (fun fact- owls can hear the heartbeat of the mouse 400m away). Well maybe my hearing isn’t that intense, but it is still super-dee-duper sensitive. From the vacuum, to the TV, to my little brother talking too loudly, to my dogs barking, sometimes it feels impossible to escape the sounds. So that’s why I have earplugs next to me at all times so I can just pop them in if the noises are too overwhelming.

The back of my head is still extremely sensitive to touch. Even when I’m trying to go to sleep, it hurts to put my head on the pillow, so I have to readjust a lot to find a way for my head to be comfortable. Also, every time I’ve been in the car, I have not let my head even touch the headrest, just in case we hit a bump or hit the brakes a little too hard. I just cannot risk my head even being slightly hit. I’m scarred from headrests, literally.

Aside from the obvious pain that comes with concussions, I’ve also been suffering mentally and emotionally. In simple terms, I’ve been a mess. Not a hot mess, not a cute mess, just a straight up MESS. Basically, every single one of my emotions has been heightened and amplified. I’ve been through periods of depression throughout this whole concussion journey. I’ve had mental breakdowns, meltdowns and panic attacks; some of which happened in public.

One of the very last times I was in public, before the pandemic, Frank and I went out to this nice restaurant for dinner. They sat us at a really nice table, but it was right under a bright light, so we had to move tables. We sat down again at a dimmer lit table and as we were looking at our menus, a big party sat down next to us. Right away they started taking pictures with flash! My mortal enemy! And by the fourth flash I internally started to freak out. I grabbed my stuff, told the waiter I have to leave (he was very confused) and I essentially ran out of the restaurant leaving Frank behind. And then I let it all out in the stairway (my tears). It really sucks because everywhere I go, I have to be on alert of bright lights and loud sounds, even at places like restaurants. This certainly wasn’t the first time I had to leave something because of lights, cameras, or loud noises. Do you know where it happened a lot? The Disney Cruise I just went on a few months ago.

I booked a Disney cruise back in October, one month after my concussion. After a little research, I found that most concussions last one to two months, tops! On average, concussion symptoms typically last only a few weeks. The cruise was booked for the end of February and I thought “There is NO way I could possibly still have concussion symptoms by then.” Boy was I wrong!

I was looking forward to this cruise so much! I’m a huge Disney fan, and I haven’t been on a Disney cruise since I was in middle school, so I was just really excited to feel happy for once… but it did not turn out that way. The morning of the cruise, I was feeling horrific; even worse than normal. Most likely due to a few restless nights before. Basically, sleep is the only thing that helps me, and if I don’t get enough sleep, it’s going to be a very, very bad day.

We get on the cruise, walk around for a little, eat some lunch, and all I want to do is lay down, even on this gorgeous cruise ship. I felt so horrible that I missed dinners, shows, and even the Pirates of the Caribbean dance party. I basically missed every fun activity on the cruise ship because my head could not tolerate the pain and I was internally miserable (despite what my Instagram looked like). Most of my Instagram pictures in the past nine months have either been throwback pictures or me just putting on a fake smile.

Here is what I actually looked like on the cruise:

It is a very scary thing how much pain a smile can hide. Not just in pictures, but in real life too. I put on a smile for other people when the last thing I wanted to do was smile. I just don’t like to be a downer or bring down the mood of others, especially while on vacation. I do feel bad for Frank because he missed out on all the fun activities of the cruise because he mostly stayed with me.

In the beginning of my concussion journey, I could barely talk or smile because I was in so much pain and it was honestly exhausting to put much energy into something as simple as grinning and speaking. Over time, I got better at talking and smiling, not because I was feeling better, but because I got better at hiding it. The average person would never suspect I was in so much pain underneath my smile.

So that’s how my concussion has been going. I’ve been trying several different treatments for my head, but nothing seems to actually help. I’ve tried physical therapy, acupuncture, electrotherapy, cupping, breathing exercises, extremely deep neck massages to help break up the pressure in my neck, flotation tanks, SOS manual therapy, herbal medicines, eating healthy, and taking supplements.

I’ve also been resting a ton; I was self-quarantining even before this pandemic, despite it looking like I’m living my best life on Instagram. I didn’t leave my house or wash my face for three weeks in January. That was where I was at, just no motivation for anything. I’ve cut down screen time on my phone and computer, I stopped emailing companies, which has made me lose a lot of work. I’ve cancelled fun plans and trips. I haven’t been able to work out in nine months because it makes me feel even worse. I’ve basically stopped life. And I’m sure a lot of you are feeling the same way right about now because of the current situation of our world. I want to continue to try out other treatments, even the most outlandish ones, but it’s been hard the last few months with places being shut down, and I don’t want to put myself (or my family) at risk if I were to go to clinics that are open. I’ve recently been trying to manage the pain with monthly migraine prevention injections. They hurt way worse than any other shot I’ve had, and I have to do the shot myself. Some days it helps, other days it doesn’t… at all.

There are a few reasons why my concussion symptoms are lasting so long. One doctor told me that I could have sustained multiple concussions, a cluster of concussions, while riding the roller coaster. Each time my head slammed on the headrest could’ve been a new concussion. Another reason could be because of the curve in my cervical spine being backwards, therefore putting extra pressure on my neck, not allowing enough circulation and blood flow to go to my brain. I have been trying out different ways and supplements to increase blood flow to see if anything helps.

I recently spoke on the phone with Olympic Speed Skater, Carlijn Schoutens, who also suffered from Post-Concussion Syndrome for nearly a year. It was really nice to talk to someone who shared some of my exact struggles and knew exactly what I was going through. It definitely helps to speak to someone who has been in a similar position. I know what you’re probably thinking right now… “what about your dad?” While my dad has suffered many concussions throughout his wrestling career, he said none of his concussions ever lasted this long. It’s hard for him to give it advice other than just rest and take it easy, but he did connect me with Chris Nowinski, Ph.D. who is the CEO of Concussion Legacy Foundation, and he helped me find the correct clinics and doctors to go to.

Not only has this concussion affected my life, it’s affected my family and loved ones’ lives too. I can tell my family is super annoyed by me and my concussion. They say they have to live their life under Noelle’s rules… which is kind of true! Noelle’s rules include: no bright lights! If they turn on any lights, they have to let me know before so I can take cover and close my eyes, and same goes with turning off lights. No loud noises, so they need to keep their voices low, keep the TV low, and prevent my dogs from barking at all costs. Sometimes they have to help me take food out from the fridge because the fridge lights are way too bright for me.

I cannot wait until the day where I can be headache free and not force a smile and drive at night, and take pictures with the flash on, and just be happy. All these things I’ve taken for granted my whole life. I really cannot wait until all the pain is gone, because this is truly ruining my life.

Every day is different for me. Some days I’m OK, and some days I feel like I got hit by a train. Some days I feel completely defeated by my concussion, but I still have hope that there are better days ahead. And if you’re reading this and you are also suffering from a concussion or anything else going on in your life, just know that things will eventually get better, even if it takes a long time. You just have to stick with it and think positive thoughts, and not give up!


If you’re interested in being connected with a mentor like Noelle was with Carlijin, if you need help finding a doctor, or if you want to learn about evidence-based treatment options for your symptoms you can submit a request to the CLF HelpLine. A dedicated staff member will point you toward resources to help in your recovery.

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 [email protected] 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 [email protected].

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.