Mackey left an extraordinary legacy both on the field and off, and the John Mackey Youth Football Protection Act continues his fight off the field for the health of football players. On the field, Mackey spent nine of his 10 years in the league playing for the Baltimore Colts. His record setting 75-yard reception from quarterback Johnny Unitas clinched Super Bowl V for the Colts and remains one of the most celebrated catches in Super Bowl history. Off the field, Mackey was the first president of the NFL Players Association, where he fought for better benefits for players. With him in good times and bad was his loving wife Sylvia Mackey.
Sylvia cared for John during his 11-year decline from frontotemporal dementia (FTD), witnessing the progression of John’s symptoms as he gradually lost his memory, executive functioning, and speech until his death in 2011. A post-mortem examination of John’s brain at the VA-BU-CLF Brain Bank revealed that CTE was also responsible for his decline. After more than a decade as John’s caretaker, Sylvia began a tireless fight to carry on her husband’s legacy through the 88 Plan – named for his jersey number—which now provides financial assistance to players affected by neurologically debilitating diseases such as Dementia, Alzheimer’s, ALS, and Parkinson’s disease.
John’s legacy continues to help change the world, most recently through the John Mackey Youth Football Protection Act. Sylvia, a member of the Concussion Legacy Foundation board of directors since 2014, shared with us her thoughts on the bill.
What was your reaction when you heard they wanted to name the bill after John?
Oh my gosh—it is a tremendous honor. It’s a tremendous honor for our family, especially since John wanted to lead programs for youth football for the NFL. He was already concerned about our youth. At the time it was more about teaching children the game of football, but if he had been around today he would have realized that he also has to protect them from the game of football. I think he’d be all for this bill and for the Flag Football Under 14 campaign. As president of the NFL Players Association he fought for the Mackey Law regarding free agency way before his passing. Now, after his death, he has another law to protect children. That is an honor.
It’s fair to say that by caring for John, you became an expert in the day to day realties of CTE and FTD. How does it feel to hear about this bill and know that people are fighting to prevent what your husband went through from happening to the next generation of athletes?
I know John would have been 100 percent behind this because at one time he was looked at to head up the youth football committee for the National Football League. Of course, he wasn’t able to go very far at the helm because of his disease. At the time that he played before he became ill, he couldn’t foresee all the problems that have turned up. However, I’m certain that if he knew what we know now, he definitely would have wanted to protect the children as much as possible and this football bill is a great start.
Do you see this bill as striking a blow against football?
No, I don’t think this is a blow against the game of football itself. We’re not saying that it should go away. In fact, my seven-year-old grandson is playing flag football and we love the game. John loved the game. The negative things that happen because of football such as CTE do not happen to the majority, but the minority that it does happen to is large enough for us to recognize and respond to. Nobody wants to see the game go away. I certainly don’t. I know there are some people who have turned against it. But we have to protect those who are playing it and make the whole game safer. We’ll never get rid of 100 percent of injuries. We’ll never get rid of 100 percent of CTE, frontotemporal dementia, Alzheimer’s, or other dementias. That’s just life. And some of it will be caused by the game. But we’re trying to lessen the impact.
What do you say to skeptics who argue that age 12 is too late for athletes to develop the skills necessary to play football at a higher level?
Well John didn’t start until he was 14 or 15, he didn’t go out for the team until sophomore year of high school. He’d been a pole vaulter and a basketball player before then. And he made it into the Pro Football Hall of Fame. To get an answer to that question, let’s ask every single hall of famer and every single retiree – when did they start playing? Some probably started at 5 or 6, but there are enough that started at 14 or 15 to support the reality that you can start playing later in life and become an extraordinary player. It’s simply not true that you can’t develop the necessary skills if you start at [age] 12.
Knowing that this bill is a step in the right direction, how optimistic are you that more states will follow suit to get out in front of this issue?
Just by the fact that two great states already have, I’m very optimistic that more states will. I’m not saying that they all will, but I’m optimistic that many more will. Only the future, which will be past our time, will tell by the statistics how effective the bill is. And I’m confident that it will be very effective.
A world-champion athlete who started competing for the USA Bobsled team in 2007, Meyers Taylor medaled in the last two Olympics—bronze in Vancouver in 2010 and silver in Sochi in 2014. But her bobsledding career was derailed by a concussion in 2015.
At the fourth World Cup race of the 2014-15 season in Koenigssee, Germany, Meyers Taylor and brakewoman Cherrelle Garrett crashed during their second run. They finished the race, but the impact left Meyers Taylor with a concussion.
Doctors cleared Meyers Taylor to race just four days later, but she knew something wasn’t right. “I felt OK, but my memory and concentration were off,” she told ESPNW a year after the incident. “I relied on my feel as a driver in the days and weeks ahead, though — and I won a world championship title less than a month after that high-speed crash. My concussion worries were behind me, or so I thought.”
Meyers Taylor received treatment in the offseason, but her drive and determination to compete led her to push through concussion symptoms again. “When I got back to sliding in October, my reactions were slow and my practice runs shaky. I took another knock to the head in November during a World Cup stop in Altenberg, Germany — one of the toughest tracks in the world — and then the headaches returned.”
She was forced to drop out of the World Cup to recover.
“I was devastated. There was nothing I wanted more than to slide down that hill. When that opportunity is taken away, it feels like your heart is being ripped out. I thought my season might be over — and maybe even my career. I’m a world-champion athlete, sidelined by an invisible injury.”
Meyers Taylor now looks at concussions and recovery differently. “If I’m tired or something doesn’t feel right, I make sure not to go again. It’s too dangerous to push through it.”
After learning the importance of proper rest and treatment for concussions firsthand, Meyers Taylor is healthy and as competitive as ever. Meyers Taylor earned three silver and two bronze medals already at the first five of eight 2017-18 IBSF Bobsleigh World Cup races leading up to the 2018 Winter Olympics in PyeongChang.
As a kid I grew up in a small town of 2,000 black people in Shaw, Mississippi. I appreciate my hometown because it’s where I learned about how to get through struggles and how to work hard, but there was no diversity and there were few job opportunities. Then my family moved, and I discovered football. I started playing at the age of 10 when I first moved from Mississippi to Bloomington, Illinois. I saw that they had Junior Football League, and I was in awe because we didn’t have those programs when I was growing up. Football gave me a chance to see the world, to dream about seeing something different outside of Shaw. I saw that it gave me an opportunity to stay out of trouble and gave me an incentive to want to do something in life. Football gave me hope.
But I want people, both players and fans, to understand that this is a game. People say so many negative things about the players who are struggling. It hurts my heart to hear, “They knew what they were getting into. They knew what was going to happen.” That’s hard to deal with when the doctor tells you that your seizures are so severe that you may die at any time.
I love football, but we are not prepared enough to handle the risks that come with playing the game. My goal growing up was to use football to get out of poverty, to stay out of the homeless shelter, and to provide something different for my kids. To be in the situation I am in now—it hurts.
My concussions were recognizable, but I wasn’t aware of or able to remember most of them. The concussions came from big collisions when I played strong safety in college. It was a hard-hitting position and there were times I’d be knocked unconscious. Usually I’d be told about them later by teammates or friends. I’d also be told that I was placed back into that same game a few plays afterwards. This happened a few times. After a while, a teammate saw that I was having seizures and reported it to the team, but I was never told this may be serious or that I shouldn’t play anymore.
The consequences of the trauma started to show back in 2009, and they’ve continued up until now. There are blackouts. Memory loss. Seizures.
I wake up every day wondering if I’m going to have a seizure. On days that I have one, I’m unable to do anything. Being a former student athlete, I’ve felt fatigue, but never the type of fatigue that I have after a seizure. Every muscle in your body hurts. You’re in a bed for a full day.
Sometimes I wake up with my friends or my kids standing over me, crying, because I had a grand mal seizure. Or I’ll have seizures where I’m just standing there staring off into space. People wonder what’s going on with me. Sometimes they think I’m being a jerk when I can’t concentrate on anything except the pain in my head.
I usually have at least two or three seizures a week. Some weeks I’m lucky and I’ll have one, but a seizure-free week is rare. I take medications that slow down my seizures and make them less frequent, but they’ve never stopped. I’ve never had anything that stopped my migraine headaches. Some days I can’t handle it. It’s just mentally frustrating to try get through everything and not be understood.
Doctors don’t want me to be alone with my kids. They don’t want me to drive. They don’t want me to work, but social security doesn’t provide much for our family.
As someone who has pride in his work ethic and wanted to finish school and start a business, it’s hard for me to go through everyday life knowing the doctor has told me I can’t work. I struggled with finishing school due to my brain injury.
I don’t want to be on disability. I don’t want government assistance. But this is the reality of what I go through because the doctor is telling me I can’t work. If I sneak off and get a job to try to work to pay a bill, they would take the benefit. And if I end up having a seizure I risk losing that job because I have to sit at home for days or be in the emergency room to recover.
My family knows I’m worried, stressed, and battling depression because I don’t know how to provide for my kids, or what’s going to happen if I die. Is social security going take care of my kids? Am I going to die in front of my kids? What consumes me is the pain of figuring out everyday life.
When it comes to my family, I’m amazed at the support system that I have. There are situations where guys have committed suicide with their family not being aware of what they’re really going through, and it’s hard for them to get through that. I know my family sees that I’m struggling through pain and these seizures and my depression. It’s really important for them to recognize. But it’s still a huge struggle for us.
When we were in college, I ran away from my wife because I was so embarrassed by the fact that I had seizures, that I had to drop out of school, that I had memory loss, that there were times when I would use the bathroom and I would pee on myself, or throw up from my headaches. I didn’t want her to see me as a weak man. But we fought through it over the last seven years and she stood by my side.
My family is what brings me joy—my stepson Isaiah, my nephew Kendrick, and knowing I’m coming home to three little girls, my daughters, Andria, Ayana, and Nina. I know that if I’m going through anything, they’re worried about “Daddy did you have a seizure? Are you ok? Do you need some pain medicine?” And when Nina gets picked up for daycare because they don’t want me to be alone with her, Nina just runs in the house straight to me saying “Daddy, Daddy, Daddy.” Those moments are my world, my motivation.
I went into motivational speaking because I wanted to reach at-risk youth and kids who grew up in situations like I did. I grew up in a poor, rural community and spent a year and a half in a homeless shelter when my family fell on hard times. But I made it out by working hard at something I loved to earn a college scholarship. I wanted to be able to mentor kids about mental toughness and how to get through things. About taking your health seriously and about taking your life seriously. But life didn’t turn out as the dream I wanted it to.
For people who are struggling with these things and for families who have lost their loved one to the struggle with depression, I understand how hard it is for you. I love everybody that is out here fighting and who’s out here on the forefront of the situation with concussions and mental health.
I struggle, but every day I wake up happy about being able to see my kids, happy about trying to be a motivational speaker or getting my own community center. I’m a survivor, and I hope my story can help others who may be battling with the same issues.
I started playing hockey as soon as I became eligible, playing under the ‘Timbits’ hockey program. As early as I can remember, I fell in love with the game. When competitive hockey became an option, there was no doubt in my mind I wanted to try out for the team. I successfully made the team as a defenseman but as cliché as it may sound, I wanted to score goals like Sidney Crosby, my favourite player. I decided to move to forward in my third year of competitive hockey, and have never looked back. I would not trade my years of experience, competition, and fun I had playing hockey for anything. I’ve gained life lessons that will forever be ingrained in my character, like developing leadership qualities, instilling trust into my team, and learning to be disciplined and punctual.
In 2013, I was the victim of a concussion. In a playoff game, I received an impact to the head from the hit of an opposing player. His hands came up under my chin and I was flattened on my back. I quickly stood back up and went to the bench. To this day, I am unsure if I hit my head on the ice when I fell. To my own detriment, I was unaware of the signs and symptoms of a concussion, and the seriousness with which they should be treated. So, I returned to play. This is what I want to speak out on. A trainer or teammate should have flagged that I was hit very hard in open ice and suggested to take me out of the game or wait a couple minutes to see if any symptoms arose. My trainer at the time just asked me if I am alright to continue playing, as well as questions of ‘Do I know where I am’, ‘Can I read the scoreboard from the bench’. I knew where I was, and I could read the scoreboard. I did not have an immediate headache after the impact, in fact, it was only after the game that I started feeling ‘off’ and that is also when my headache began.
Four days later, I was playing in another game when I received a smaller impact to the head, in the corner of the ice during a battle for the puck. The opposing player’s elbow grazed my head, but it was enough for me to notice that I did not feel myself, and hadn’t been myself for more than four days. This was when I knew something was wrong. I started feeling a headache and slight dizziness, and I knew I needed to step out of the game. I watched the remainder of the game from the bench, supporting my team.
I saw a concussion specialist who informed me that I had gone through what was known as Second Impact Syndrome. This occurs when a person receives a concussive impact, and then receives another significant impact to the head within a short time frame afterwards. I was told that I was lucky to still be fairly healthy aside from the symptoms that came with the concussion. My doctor initially said to stay out of school and minimize cognitive stimulation for approximately a week or two – meaning no school, no sports and no physical activity. At the end of week two, I was still suffering from symptoms. It took around six months of rest before those symptoms cleared up. I was out of school and sports for the entirety of that six months. I tried to attend school on days when my symptoms had lessened, just to catch up, but I could hardly attend two days in a row before they worsened. When I started improving, I was slowly increasing more incremental activities into my daily routine. I was cleared to return to full activity with no issues once I had recovered. Just over a year later, in December of 2014, I suffered another concussion. Luckily it was minor, and I was also well equipped with the knowledge I needed to take the proper precautions. By slowly integrating more activity until I felt like there was no more limit to what I did and how I felt doing it, I was again cleared to play.
After that hockey season, I made the tough decision to take a couple years off contact sports, choosing to play non-contact hockey instead. However, in the fall of 2016, I decided to play contact hockey for one last time with friends I grew up playing hockey with. During the first game of the season, I was hit to the head by an opposing player whose hands came up and made contact to my chin. To most people that have had a concussion history similar to mine, you would imagine that my first thought would have been for the health of my head. Unfortunately, the pain in my jaw overpowered any thoughts regarding another concussion. I had not fallen unconscious, but I wanted to talk to my trainer to let him know what was happening. I told him what I was feeling, and he thought I was okay to play the remainder of the game if my jaw was still in place and all my teeth were still intact. Although he is not to blame for letting me go back out to play after a head collision, this trainer was well aware of my concussion history. Luckily, I did not receive any significant hits that rattled my head for the rest of that game. When I got home later that night, I was feeling off. I recognized the feeling as how I felt when I had my previous concussions. My mom took me to the hospital the next day for x-rays of my jaw as well as a concussion diagnosis, which turned out to be positive. At this point, I had been reminded of the concussion protocol more times than I could remember, so I was able to remember to minimize my stimulation, and start my road to recovery from there.
After a couple months of rest; away from school, work, and limiting time with friends, I did not show any improvement. My specialist determined that I had progressed into the PCS stage. Post-Concussion Syndrome (PCS) is a stage in which your concussion symptoms have persisted longer than the normal course of recovery. The way it was explained to me, PCS is a stage in which your body can be constantly on high alert. Your body cannot find a way to reassure itself, which can exhaust you without having to conduct physical activity. This is caused by an amygdala (part of the brain) that is unable to stop subconsciously scanning for threats. When your body is always in high alert, or “fight or flight” mode, it causes muscles to tighten to prepare for potential threats. This created my pains, aches, and tightness throughout your body.
Although the physical aspect of constant muscle tightness and maintaining your pain levels can be exhausting, it created a constant anxiety within me which I had not dealt with before. It’s general anxiety, caused by this high alert phase. This limits my ability to be out of the house because when I am out, my alertness increases and worsens my anxiety as well as my muscular aches. My average outing that also tends to be one of the higher strain “activities” I do, is going to the grocery store with my mom. It becomes less manageable based on how busy it is when we go. When it is not too busy, it is still a tough task, because of the brightness of the lights, the people and the constant background noises. This is a very normal task for someone else, but depending on the stimulation, this could worsen my symptoms and take me out of commission for the remainder of the day, or I could manage making it out without any repercussions.
Through my journey, I’ve found out the hard way that concussions are often misunderstood by people who have never been educated about them, unless a close relative or friend has previously suffered from one. Of course, the vast majority know what a concussion is and how it can affect someone for a short period of time. What many people do not realize is that the severity of the impact and a person’s previous concussion history can make symptoms increase in severity and duration. As I mentioned, if you’ve suffered from a concussion or know someone that has, this information is nothing new to you.
However, many people seem to think a concussion involves just a bump to the head, followed by a dark room and no electronics. While that is partly true, there are cases (like mine) where symptoms get to the PCS stage where there has been no change in condition for a prolonged period of time. You remain limited in normal activities that others find to be trivial and mundane. To those around you who cannot grasp what you are going through, they can become confused as to why you are still struggling with certain things. As an example, I will use classmates at school. It is very hard for classmates to understand why you are no longer attending school. They see that you suffered a concussion and suddenly you’re out of school for a few months. Yet when they can come to terms with this absence, it becomes complicated again when they see you start integrating yourself into more stimulating activity, like seeing you at a grocery store or heard that you are having a close friend over to your house. They cannot figure out why you are able to go to a store and shop, yet you cannot attend school.
Concussions are not like any other injury, where you break a bone or sprain a muscle, because there really is no approximate time as to when a person will be fully recovered. The way I saw it was, if people couldn’t see the injury then they assumed I was fine. Therefore, I think classmates struggled to grasp why I was not seen in school for a long period of time. I believe the misconception of concussions had people wondering why I suddenly stopped attending classes to recover.
Truthfully, I never took what people thought to heart simply due to the fact that they do not know what I am going through or having to deal with. Whether it was the many appointments with various doctors, the acupuncturist, the massage therapist, the neurologist, or whoever I was seeing, the only person that fully understood was my mom because she was always alongside me. Other than my immediate family and close friends, no one really understands what I am going through on a day-to-day basis.
As frustrating as that misconception can be, I chose to accept it and work through it. It would be much harder to stay positive and continue progressing in my recovery if I spent time dwelling on what others thought. The only person that can dictate my recovery is me, by knowing my limits on how to push myself to do stimulating activities but stopping before I bite off more than I can chew. I know I will get better eventually. I know I will continue my life as planned, no matter what obstacles get in my way. The way I see my concussion and its limitations, is that it just put my life on pause until I am ready to take it on again. I may not have gotten my diploma at the same time as my fellow classmates, I may not still be working and making money like my friends are, but I will when this blows over. For now, the only thing I’m working on is my recovery.
I have had a concussion for about 11 months now. It has not been an easy road to recovery, but without the support and help I’ve had from friends, family, and doctors, this recovery would have been much more difficult. I missed the majority of my first semester of grade 12, along with the entire second semester, which means I lost the ability to graduate with my classmates. The one thing that helped me day in and day out was optimism, whether it was through others or reminding myself that I will eventually get back into what I was doing before this concussion occurred. I often told myself that my life was just on pause, that I was just sidelined, and I will succeed in what I wanted to pursue once I recover.
In 2016, the Concussion Legacy Foundation launched Team Up Speak Up, which encourages coaches to ask their athletes to Speak Up if they think a teammate may have a concussion. Understanding that athletes often cannot recognize when they have a concussion, or feel pressure to stay in the game, the goal of the program is to change the culture around concussions and help athletes play more safely.
Mack Gentry, a junior from Justin-Siena High School in Napa, California, was nominated by his athletic trainer Sarah Merkel for Speaking Up for his teammate on the football field last season.
Mack has played safety for the Justin-Siena Braves for the past two years, but he was sidelined during the 2016 season by a broken collarbone. Nonetheless, his commitment to the Braves football team remained resolute, and he was on the sideline of every game and practice, supporting his teammates.
It was during a very competitive home game that Mack put Team Up Speak Up into action. During a time-out, Mack saw that one of his teammates looked distressed. “He came out and it looked like he had been crying,” Mack said. “He said that he might have a concussion but he didn’t want anyone to know because he wanted to keep playing.” Even though his teammate wanted to stay in the game, Mack knows that concussions are too dangerous to hide. He approached the athletic trainer and told her what he saw. The athletic trainer immediately pulled the player, put him through the sideline protocol, and discovered he did, in fact, have a concussion. By looking out for his teammate, Mack may have saved him from being hurt much worse.
Mack knew that in the heat of the moment his teammate might get upset with him for telling the trainer, but he also knew that it was too risky to let him go back into the game without being evaluated for a concussion. “He was kind of mad at first because he wanted to go back in and wanted to play,” Mack said. “I think we were losing that game. But after a couple of days he realized, ‘Oh wait he did that for my safety’ and he said, ‘well, thank you.’”
“Mack is the definition of a spirited, loyal teammate,” said Merkel, who noted that younger players often “disappear” from practices after an injury, only showing up as support for home games. “But not Mack. He was at every lifting session, practice, and game, home or away, and it paid off for his teammate.”
Mack’s exemplary action revealed the critical role teammates play in diagnosing concussions. His team participates in the Team Up Speak Up program, the centerpiece of which is Team Up Speak Up Day, an annual nationwide event with the goal of getting as many athletes as possible to hear one simple speech. The message is clear:
1. We’re a team and we look out for each other.
2. A teammate with a concussion needs your help.
3. I expect you to speak up to a coach or athletic trainer if you think a teammate might have a concussion.
The speech originally comes from Harvard University Football Coach Bill Reid’s diary of the 1905 season, in which Reid records the team doctor’s annual safety lecture. The doctor emphasized that teammates must look out for one another on the field, and stop the game if someone is hit in the head.
This speech, lost to history for more than 100 years, demonstrates the core message behind Team Up Speak Up Day. A person of authority must instruct their athletes on the dangers of concussions and emphasize that athletes have a responsibility to report concussion symptoms in a teammate. Otherwise, many players might still believe they are being a good teammate by covering for an athlete with a concussion. Players need to know that no matter how big the game is, the risk of playing with a concussion is always bigger.
It’s strange how you can live your life never coming across the phrase “Post-Concussion Syndrome,” never thinking about it or knowing what it is. And then – boom – a series of events means you don’t go a day without thinking about PCS. How to fight it, how to solve it like a puzzle, how to explain it to doctors, or family, or friends
Three years ago I suffered a traumatic brain injury that affected every area of my life. I lost my career in big wave surfing and I was unable to keep a regular job because my PCS symptoms left me fatigued, anxious, and depressed. For three difficult years, I wasn’t myself.
It got to the point where I knew I needed drastic help, so I moved from Hawaii to Austin, Texas to start my recovery. I dedicated myself for fourteen months to extensive treatments and I was blessed to find the right guidance. My symptoms have gotten better, and I’m finally back in charge of my life and appreciating a new-found health that took so long to achieve.
I’m using my experience to help people who are currently suffering from the effects of a head injury and don’t know where to turn. The most important thing is to reach out for help and to stay hopeful. Your brain can heal. When you’re in the middle of a tough recovery process, this simple feeling of hope can be hard to find. Having a support system to keep you on track is essential.
I’ve decided to pledge my brain to the Concussion Legacy Foundation for research. I want My Legacy to be that I paid it forward, used my experience to help others navigate the seemingly impossible process of dealing with a traumatic brain injury. There isn’t a lot of research on brain trauma among surfers, and I want to be a leader in my sport, my community.
When you take a painful hit from an enormous wave like I did, it can be easy to focus on yourself, to dwell on why this happened to me. But the reality is that sports, especially extreme sports like big wave surfing, carry a risk of injury. I want the lessons I’ve learned throughout my recovery process to be available in case another athlete needs to hear that help is out there and they’re not alone.
At school Monday morning, I could not focus on the Spanish presentation as the words were jumbled and I couldn’t bear to look at the screen longer than a few minutes. I had never felt like that before, so that’s when I knew that something was wrong. Over the next fifteen months, my life as I knew it was completely different.
I took three weeks off from school to rest and recover. Unfortunately, I do not remember much from that time, as I was in a dark place. Literally, I stayed in my room with the curtains drawn and slept, a lot! Sitting on the main floor of my house was too bright and too loud for me. My head would constantly throb in pain. Some days I would wake up just to eat lunch, nap until dinner, and then go right back to bed. Other days I wouldn’t even eat because the headache pain made me so nauseous. This routine was repeated again and again. Time kept going, but I felt like I was standing still.
When I was awake, I walked around the house with a hoodie, sunglasses, and a hat on and only emerged from my room to go to a doctor’s appointment. We went to see so many doctors that I lost count. They all said the same thing, “you will get better, but it will take time. Unfortunately, we don’t know how long.” No one could tell me how long this would last, when my pain would subside, or when I would get my life back. That was so hard for me to understand. I was ending my sophomore year of high school and wanted nothing more than to get back to school. Throughout these three weeks, I had minimal contact with my friends.
What made things worse was that others could not understand my pain. No one from my team (players or coaches) reached out to me. The kids at school knew I was hurt, but they didn’t really know how bad things were. As time went on and no one reached out, my loneliness grew. I thought if I broke my leg, the kids would see the cast, sign it, hang out with me, and eventually I would heal. Unfortunately, there is no cast with a concussion, no obvious sign of pain or trauma. No tests to show progress.
After 3 weeks, I tried going back to school. To be clear, this did not mean full time, it meant showing up and seeing what I could handle. I went for a couple of days, but my headache would go from bad to worse. Each day my headache increased from the normal throbbing to the splitting “I need to lie down” category. Going to school was just too much – the noise, the lights, the questions, the incomprehensible material. It was overwhelming! Not only did I have to deal with the stress of sitting in classes and not understanding any of the material, I also received minimal support from my classmates. When my friends saw that I was back at school looking “normal”, they assumed that I was 100% better. Many of them asked, “how are you still concussed?” or questioned my dedication to the water polo team by asking “are you even still a part of the team?” I was not prepared to face these social hurdles and all the hurtful questions. After finding out that I didn’t have to complete my final exams that year, I was so relieved. But when my friends heard, there was a chorus of “omg you’re so lucky” or “ugh, I wish I could be concussed!” They just didn’t understand. Students recovering from a concussion need to be supported, not challenged or ostracized. After some discussion with the school, I was given final grades based on my year-to-date strong academic performance and told to focus on my recovery. Unfortunately, this relief was short lived as the severity of my concussion started to become more apparent.
My summer was comprised of more than 100 medical and non-medical appointments. No, that is not a typo! While the medical profession has come a long way on many injuries, diagnosing and treating concussions is still in its infancy. From the doctors, therapists, acupuncturist, psychologist, we tried everything. Sometimes, I felt pain relief, but typically it was just temporary. Many times, the treatment made my headache worse! I had to re-learn the basics. My balance was off, my hand-eye coordination was severely diminished, and my mind wasn’t able to find the right words or I would mix words up in my head. My cognitive therapist originally assessed me at a 3rd grade level. Think about that – I was a 16-year-old girl about to go into her junior year with the cognitive abilities of an 8-year-old. Although this was one of the hardest things I have ever heard, it was a catalyst that made me want to work harder to get back to my old self.
My 16th birthday was six weeks after my injury, but I didn’t feel much like celebrating. My headache was still constant. The noise, music, and chatting all amplified my pain. Even though I didn’t want a party, my parents insisted that I needed something to get my spirits up. I hadn’t seen any of my friends outside of school for six weeks, yet there was little curiosity about my health. Most of what we talked about was prom. I’m not saying that I needed that night to be all about me, but my friends showing a little more compassion would have helped. On my actual birthday, a girl from my math class, someone who I would call an acquaintance, texted me happy birthday and said, “I hope you feel better soon! Math class isn’t the same without you!” That little text message meant the world to me as it showed that someone cared. Just because my best friends didn’t care, doesn’t mean that other people didn’t. A note to friends of people dealing with a concussion: a small message showing you care means the world.
My life before April 14th was normal, as can be for a teenager. I enjoyed school and participated in many after-school activities, which included being on the varsity swimming and water polo teams. In fact, while I wasn’t the best player on the water polo team, I was chosen as a co-captain for the varsity team as a sophomore. Most of the girls that swam also played water polo, so we were all super close, or so I thought. Only one of the 20 girls on my team eventually reached out to me. My best friend of 12 years did not call or text for two whole months after she found out I got a concussion. I had a little bit of an easier time understanding why my friends at school didn’t reach out to me, but I was so hurt and baffled by the lack of care from someone who I considered my best friend. Looking back, I realize that the physical limitations from a concussion are difficult but they are emotionally compounded if you don’t have support from your friends. I guess it’s true when they say you really find out who your true friends are in times of need.
Before the start of junior year, I had a few meetings with some faculty and collectively concluded that I should drop my elective that year: AP Chemistry. I was so excited to take that class and challenge myself, but I was held back by my cognitive capabilities. This wasn’t ideal and added to the anxiety of my recovery. On my first day of classes, I spoke to all my teachers to explain my situation, as I wasn’t able to complete my summer assignments. Other students heard me telling teachers that I was still concussed, and they once again questioned me, “Simran, are you sure you still have a concussion?”, “How is it possible that you are still concussed?”, or “You have to be better by now. When I had a concussion, I was better in a week!” When I got home that day from school, I broke down, and began to question myself: did I really have a concussion for 5 months? Had I gotten so used to the constant headache that I didn’t even have a headache anymore? That was one of the hardest days of my recovery. However, I remember my parents offering great advice: you have to try your best to stay positive and only focus on what you can control. From that point onward, I decided that I would do everything in my power to get through this important year. This was the first year that I used extra time on tests, had a diminished homework load, and used Learning Resources at my school. Because I had all new teachers, I had to prove to them that I was willing to work hard and do my best even with my limitations. For the first two months of junior year, I wasn’t able to attend full days, as my headaches would be limiting part way through the day depending on the workload. I had a constant headache from April to October, six whole months, 175 days. At that point, the pain started to ease.
Throughout my various treatments, I pushed myself to stay positive. After a while my sunglasses came off, I could walk around without my hoodie, and was able to sit on the main floor of my house without exacerbating my symptoms. The lights didn’t bother me and nor did the sound of TV or music. As I went from appointment to appointment for pain relief and therapy, I started to notice progress there too. My balance was coming back, I could find the words in the word search without any help. In late 2016, I finally got an appointment with a well-known concussion doctor in Chicago: Dr. Labella. She knew concussions, she had an integrated plan for assessments, and a variety of treatments in case one didn’t work. One treatment she suggested was sub-occipital nerve block injections. These were injections in the back of my head attempting to numb the nerve that amplified my pain. The irony is that the most painful option was the only one that worked for me. For the first time in months, I was pain free!
I have learned so much about myself through this recovery. I have grown as a person and am so much stronger and more mature than I was before. There were days when I moped around the house, crying and my frustration would eat away at me. Why did this happen? What did I ever do to deserve this? Honestly, no one has the answers to these questions. What I do believe is that everything happens for a reason. This setback has taught me patience, dedication, perseverance, and the power of positive thinking. I knew I would get better, it was only a question of how long will it take. I now have the confidence to face any future adversity head-on and know that I can be successful. I recently finished my junior year and am happy to report that I received really good grades. As a wise man told me, it’s not how you start the race, Simran, it’s how you finish that counts. I believe I finished strong.
Click here to donate to The Mike Adamle Project: Rise Above and help support families living with suspected CTE.
Posted: March 2, 2018
Through The Mike Adamle Project: Rise Above, my husband Mike and I are on a quest to learn how best to live with CTE. Part of that process is discovering how to create the healthiest possible lifestyle for Mike when it comes to diet, exercise, and cognitive stimulation. Here’s what we have learned:
Exercise
Mike has always been most at home in athletics – in motion. Movement is like meditation for him. We knew exercise was important for health overall, but were there exercises that were found to be helpful for brain functioning? We discovered exercise increases oxygen to the brain, promotes neurogenesis (new brain growth), produces the release of “feel good” brain chemicals (like serotonin, endorphins, and dopamine), and reduces stress. All of these benefits also fight off the depression and paranoia that CTE causes.
While you should create your exercise plan in coordination with your physician and take into account what is appropriate considering your health and injury history, Mike and I discovered research linking the following physical activities with brain health, and Mike found they were FUN!
Biking – biking has all of the benefits you might expect, like cardio-vascular and strength/muscle improvements. Recent studies, however, have demonstrated improved movement for people with Parkinson’s. Brain imaging demonstrated improved connections in parts of the brain associated with Parkinson’s. Biking not only improved movement and cognition, but also proved to be more effective than drug treatments, according to this 2013 study.
Cardio Boxing – NO, we are not advocating punches to the head! But boxing is about so much more than punching: the patterns of jabs, punches, and undercuts includes thinking and memory skills used in coordination with body movement. When reacting to a partner, your brain is also working to read cues and react defensively as well as spontaneously planning your next moves. A boxing workout without head contact packs a one-two-punch of physical and cognitive exercise!
Ballroom Dancing – rumba, anyone? Believe it or not, ballroom dancing is one of the best activities for brain health as well as for overall longevity. Why? Ballroom dancing incorporates multiple facets shown to benefit our brains, bodies, and mental health. First, dancing is a workout – great cardio benefits, isometric muscle conditioning, and increased flexibility. Secondly, your brain is actively working by remembering dance patterns, body placement and positions. Your brain is also responding to your dance partner – whether you are leading or following. And speaking of dance partners, dancing is a social activity – the third facet that contributes to brain and social/emotional health. In ballroom, you are face-to-face and touching – powerful medicine for the brain. And lastly, dancing always involves music. Music is a potent therapy that evokes memory, improves mood, and triggers brain stimulation on multiple levels. Who knew you could waltz your way to wellness? (PS – Mike adds ballroom dancing is like a “get out of jail free card” with your wife!)
Diet and nutrition
Healthy diets are well-documented as a necessity for optimal functioning, well-being, and longevity – but there are so many different types of “diets”, it can be overwhelming to know which to follow and how to start. “Diet” conjures up spats of quick weight loss hacks and trends that come and go out of style but never really work in the long run, so paramount to us was eating in a way that was not only healthy, but also sustainable. And it had to be enjoyable and great tasting.
Our research showed that most disease, including brain degeneration, involves inflammation, so we concentrated on foods and a way of eating that reduced inflammation. A good brain diet is one that is anti-inflammatory and low glycemic, with lean protein, lots of antioxidants, and good fats that are high in omega-3 and 6. Sugar is a primary cause of inflammation and so we keep sugar intake to a minimum. Simple carbohydrates from things like white bread, white rice, packaged cookies and crackers, most processed foods, and alcoholic drinks metabolize into sugar when digested, so we try to avoid these types of food, as well.
Books have been written describing this way of eating (we’ve found The Perricone Prescription, by Nicholas Perricone, M.D., to be a good guide and many of the recommendations here are from his plan), but here is a snapshot of a healthy brain diet:
Basic eating plan
Eight to ten glasses of water
Three meals, evenly spaced throughout the day
Two snacks, spaced between meals
Each meal and snack should contain a source of protein (our bodies cannot store protein, so we need to provide it regularly), good carbohydrates, and fats in the form of omega-3 and omega-6 essential fatty acids
Coffee – a cup or two in the morning, minus all the sweeteners
Cocoa – yes! Dark chocolate is chockfull of antioxidants
Whole wheat or oatnut bread
Oatmeal – steel-cut or old-fashioned oats, not the instant kind
Tea – black or green
Spices – turmeric, ginger, garlic
Apples – green apples are lowest on the glycemic scale
Lemons – provide vitamin C and bioflavonoids; squeeze in water or on steamed veggies and fish
Cottage cheese
Greek yogurt – avoid varieties with added sugar
Foods to avoid
White bread
Cake
Cookies
Sugar-laden cereals
Doughnuts
White bagels
Instant rice
Puddings
Sodas
Vitamins and supplements
Although eating a wide range of healthy, fresh, and chemical-free food may provide all the nutrients we need, Mike and I choose supplements to ensure that we are providing our minds and bodies with all the nutrients needed; and when fighting a neurodegenerative deterioration, it’s essential to flood our systems with powerful fuel.
Learning from the experts
The exercise and diet plan Mike and I have incorporated into our daily lives is based on the latest research showing how best to promote brain health. I encourage you to stay up to date and sign up for CLF’s CTE Resources newsletter for access to what the world’s leading researchers on CTE are saying. One of those researchers is Dr. Robert Stern, director of clinical research at the Boston University CTE Center. Hear what Dr. Stern suggests when it comes to diet, exercise, and social engagement that will promote brain health:
Click here to donate to The Mike Adamle Project: Rise Above and help support families living with suspected CTE.
Posted: March 1, 2018
Why we’re here: from Kim Adamle, executive director of The Mike Adamle Project: Rise Above
“If I have this, then I want to be the one to show others how to LIVE with it” were the first words from Mike when his neurologist told him his epilepsy and cognitive degeneration were probably due to Chronic Traumatic Encephalopathy (CTE). The doctor did not have much advice to share with us on how to cope with CTE – the most he could advise was 1,000mcg of B12 daily, a healthy balance of omega-3 and omega-6 fats, and to work as long as possible – to keep learning and stay active.
There is no cure yet for CTE, so our quest became: How do you live with CTE? How do you stay alive and experience a life of quality? Mike has always lived his life 110% all heart and all-out, so we approached this challenge with the same vigor. Through many heart-wrenching, tearful, gut-honest conversations, Mike distilled the essence of his goals for his life fighting CTE: to live with Dignity, Optimism, Energy and Excitement, Contribution and Purpose, and most of all – to give Hope to others.
Awareness of CTE is just emerging, and doctors and researchers are working to discover treatments. But for the many who are affected right now, we need to share our journeys, our experience, and offer support to one another. We do not have the time or luxury of waiting; we need to take action now for the sake of those afflicted with CTE and traumatic brain injury (TBI), and for their families and spouses, who are often the care partners.
CTE/TBI is pervasive, so we knew our life plan had to be comprehensive and multi-faceted. We targeted these primary life areas:
Medical
Nutrition
Exercise
Learning and Cognition
Social and Community
Spiritual
From these areas we started drawing big concept maps, asking what resources we already had – who were our “teams”? You know the saying, “it takes a village”? Dealing with CTE requires teams – many, many teams. Drawing up our teams in each of the above areas helped us organize and identify people, resources, and activities to support Mike’s functioning.
After establishing our support teams, we researched what to do. Did you know our brains continue to grow connections throughout our lives? Our goal was to do all we could to promote overall brain health as well as try to support neurogenesis (the scientific term for new brain cell growth) to offset the brain deterioration from CTE. We don’t know if we can stop or slow the brain degeneration yet, but we can do things to improve the functioning of the brain we have and strengthen the trillions of connections between our brain cells. Because we were determined to live our best life for as long as we could, we knew that various therapies once or twice a week would not be enough: Mike’s therapies had to be constant and consistent, so we incorporated everything we learned into our daily routines. Activities promoting brain health became our lifestyle, and every activity became an opportunity for growth.
This journey is improved by a strong support team. Those “care partner(s)”, whether they be a spouse, children, or other family or friends, necessitates a strong commitment and healthy working relationship.
The content you read from Mike and me as part of Rise Above is designed to give you the inside scoop on how we have approached our life since that moment Mike was diagnosed with probable CTE. We have heard from many families going through experiences all too similar to ours. We want to give you tools, resources, a supportive community, and hope. As you read and watch all that Project Rise has to offer, also incorporate the expert information and strategies from CLF’s CTE Resources pages so that your resources toolbox is as full as it could possibly be. We’re here for you, and we will get through this together.
