Posted: January 21, 2020

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can read Tom McHale’s Legacy story here.

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.