Posted: November 19, 2019

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

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

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

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

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

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

Unsettling changes

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

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

These included the following:

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

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

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

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

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

What my symptoms are like

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

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

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

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

Managing my symptoms

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

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

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

The importance of a support network

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

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

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

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

Embracing hope

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

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

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

Posted: February 1, 2021

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted: February 28, 2019 

Matt is one of thousands of people who have pledged to donate their brain to CLF to support research. He shared his thoughts about Project Enlist, CLF’s program to advance research in the military community, during Brain Pledge Month 2019. Watch the video and read on:

Why is pledging one’s brain to research something that you’d like to see catch on among service members?

I’ve pledged my brain to CLF, and as you know, I’m a veteran. My former boss, and good friend, Bob McDonald, also a veteran, who was the Secretary of the VA, has pledged his brain as well. The more veterans we can inspire to pledge their brains – veterans who have typically played sports or who have been in combat – the more work we can do toward the advancement of vital brain research.

 

It’s seriously important to get as many veterans’ brains pledged as possible. It’s very similar to pledging your organs when signing for your driver’s license. It’s a really impactful and important thing to do for research; and I think every veteran should at least consider it.

Just to be clear, for this effort to be successful in the long run, we will also need to conduct research on brain specimens that have not been subjected to trauma – to act as a control group for the research. Every pledge counts no matter the exposure you have had to brain trauma.

What do you hope Project Enlist will accomplish?

Researchers have made tremendous progress learning about the consequences of brain trauma in various sports, but there is still so much more we need to know about TBI, and the causes of PTSD and CTE in veterans. It’s critically important that we learn what is unique about the brain trauma that many veterans are exposed to during military service. Through Project Enlist, we will mobilize the military community to support this research, and I hope it accelerates efforts to improve the long-term health and well-being of not only our veterans, but of Americans in general.

 

The VA is a collaborator with Boston University and the Concussion Legacy Foundation on the VA-BU-CLF Brain Bank. What did you learn about the VA’s research capabilities while you were there, and how did you eventually get involved with the Concussion Legacy Foundation?

First of all, people know very little about the monumental research that is done at the VA, and it’s not just for veterans. The VA has conducted major pioneering heart studies, performed the first liver transplant, developed the nicotine patch, and the list of discoveries and major breakthroughs in healthcare go on and on – in fact, doctors working for the VA have received several Nobel prizes, and numerous Lasker awards. Ironically, major innovation and game-changing research are not what the VA is known for, but the VA and its brilliant researchers demonstrate these unique and significantly impactful qualities every day.

I got involved with CLF a few years ago while serving the VA under then Secretary Bob McDonald. I became intensely interested in brain science because so many veterans suffer from brain injuries and from PTSD. We thought it was critically important to explore, and better understand, why these phenomena were happening at higher rates in the military. So one of the things we (the VA) did was to start an event called “Brain Trust.” We gathered the best and brightest from all over the country in brain research, and brought them all together. We wanted to create an environment conducive to partnerships and creative thinking. During this time, Bob Costas introduced me to Chris Nowinski.  Of course Chris and the Concussion Legacy Foundation really stepped up to the plate for Brain Trust. I was so impressed by Chris, his team, and the work CLF has done, that I eventually worked with Chris to come on to CLF as an informal advisor. Ultimately, Chris and the board asked me to join in a more official capacity as a full-fledged Board member. I’m extremely honored to be part of the CLF team.

What do you hope to accomplish as a member of CLF’s Board of Directors?

First and foremost, my focus will be on improving the lives and long-term health and well-being of veterans. I hope my experience and connections in the military and veteran community will help push research forward through programs like Project Enlist, and help enhance the work CLF is already doing for veterans and their families.

The awareness of concussions and CTE right now is probably higher than it has ever been. Did you ever think about all those hits adding up while you were playing hockey for West Point or during your military service?

When you’re young, of course, you think that you’re invincible. I never really thought of the hits to my head as a boy or as a young man, but I think about it now – much more frequently. And the idea of invincibility, which is a common theme by the way, as our brain donor families talk about their loved ones – many of whom were professional athletes – and who ultimately suffered the consequences of CTE. This feeling of youthful invincibility is exactly why we need to raise awareness with young men and women, as well as their families – before CTE can take hold as a result of repeated hits to the head.

And as you translate this to military service, and the greater vulnerability to our military men and women in combat zones as they serve our country, it’s critical that we better understand what is really happening inside the brains of these brave service men and women as a result of exposure to explosions, blast, and the impact of trauma. We are only in the embryonic stages of brain research, and we need to learn so much more about how this trauma could be connected with PTSD, and other possible psychological manifestations of CTE. We have a long way to go, and the only way we can make progress is one important step at a time.

You are a prime example of a successful transition from the military to civilian life. What allowed you to make that transition so smoothly?

I’m not sure… I guess I’ve been very lucky to have had a very supportive family around me since I was a kid; and have been, and continue to be, surrounded by great people – wonderful employees, terrific bosses, talented colleagues, and extremely helpful and caring mentors.

Join Matt Collier and pledge to donate your brain.

Posted: January 29, 2018

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.

Posted: November 20, 2017

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.

If you want to reach me, send a message to [email protected]

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
• Choose fresh or frozen foods whenever possible

Antioxidant best bets

• Avocado
• Bell peppers
• Berries – blueberries, strawberries, blackberries
• Cantaloupe and honeydew melons
• Dark green leafy vegetables – spinach and kale
• Broccoli
• Orange-colored squash
• Salmon
• Tomatoes

Optimal protein sources

• Chicken breast
• Turkey breast
• Seafood – wild salmon (not farm raised), cod, halibut, sardines
• Egg whites
• Natural peanut butter without added sugar or salt

Other foods to enjoy

• Nuts – almonds, walnuts, pistachios, hazelnuts, pecans
• Beans – black, kidney, lima
• Quinoa
• Lentils
• Olive oil – and lots of it
• 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 make a donation in support of The Mike Adamle Project: Rise Above.

Posted: May 10, 2016

Below is a full transcription of Margy and Marnie’s interview:

The McHale family:

Margy McHale: I’m the youngest of five and then Tom was fifteen months older than I am. We’re really close to in age – there’s less than eight years between five of us. Tom and I were extremely close. Many people I think thought we didn’t even have other brothers and sisters because we were always hanging out. He and I actually shared a room when we were younger. We had a mutual trust with each other even as very young kids, always talking going to sleep every night. I went to most of his games growing up, everyone did in the neighborhood. It was a planned community so everyone supported each other.

Who was Tom McHale:

Margy McHale: My brother, when he swam on swim team as a kid always had records, he had records in high school for track, anything he did, he did really, really well. My brother was an extremely kind person, fun, always interested in everything I was doing. When you spoke to him you felt like you were the only person in the room. During college or even after that, even when he was married, we would spend hours talking after everyone would go to sleep and just catch up on everything and I still live where we grew up, so he’d want to know about everybody. He was a really, really good person. Just a gentle, gentle man. He loved his family. He has three children; his oldest boy is special needs.

What happened to Tom:

Margy McHale: Nine years in the NFL. He’s not your typical football player. He loved it and he respected it and it was a business and he was extremely good at it, but it wasn’t something that defined him. He was into cooking and a lot of other things that never really were football related. I don’t think he and I ever really talked football that much. We were brother and sisters, we talked life. Tom seemed fine for a long time and then there was a huge shift in his personality and he started doing drugs and drinking and not taking care of himself. It was really sad to see because we could talk forever and be together forever and those conversations change and he didn’t reach out to me or return my calls.

What is CTE:

Margy McHale: Chronic Traumatic Encephalopathy is Tau proteins building up in your brain and basically, it’s shutting your brain down and causing damage to your brain. Intelligent, wonderful men who’ve given their life to play and entertain people – can you imagine for all these guys not knowing what’s happening to them?

What do you want Tom McHale’s Legacy to be:

Marnie Abramson: Most people are not going to become professional athletes but most kids will play sports. I hope that the legacy with this event is that sports get safer.

Margy McHale: I want to win if I’m playing something but not at the expense of not being around to enjoy your children, permanently be in brain damaged, having pain from headaches the rest of your life. It should never happen. It doesn’t have to happen and it will change. But people have to get on board and that’s why we do what we do.

My husband Mike Adamle and I constantly remind the people we engage with as part of The Mike Adamle Project: Rise Above that eating right and exercising are two of the more obvious and important components of a healthy lifestyle. But did you know socializing and staying connected with friends and family may also help your brain fight against Chronic Traumatic Encephalopathy (CTE)?

Dr. Robert Stern, Director of clinical research at the Boston University CTE Center, says staying socially engaged wires the brain in a way that may help slow down or even prevent it from getting damaged. This can be as simple as picking up the phone to call an old friend, joining a book club, or any other method of maintaining a social network. These connections are crucial in helping the brain protect against degeneration.

Mike and I have experienced the power of socialization firsthand. Watch the below video to learn more about how staying social has helped improve Mike’s mood, energy level, and overall mindset as he lives with what doctors believe is probable CTE.