Chris Nowinski, Ph.D., knows what life is like when you live with ongoing concussion symptoms. His illustrious wrestling career coupled with his Harvard degree uniquely qualifies Chris to talk about the fallout of how concussions can affect an individual as days flow into weeks and years. Not only is Chris co-founder and CEO of Concussion Legacy Foundation, he is also co-founder of the BU CTE Center. Chris serves on the NFL Players Association Mackey-White TBI Research Committee, the Ivy League Concussion Committee, Positive Coaching Alliance National Advisory Board, and as a consultant to Major League Lacrosse.  He earned his Ph.D. in Behavioral Neuroscience at Boston University School of Medicine.

My Elite Network: As the CEO at Concussion Legacy Foundation, explain a little bit about what the foundation does, and the impact the foundation is having on former players.

Chris: I started the foundation in 2007 with Dr. Robert Cantu, who helped me get put back together after my post-concussion syndrome ended my WWE career. The idea at the beginning was simply to give a home to the brain bank work that was going on back then as we tried to get our arms around how a big a problem CTE was in football. I was involved in acquiring the third and fourth cases of NFL players who died as a result of CTE; Andre Waters and Justin Strzelczyk. I realized that the work was going to be both how we created change within sports to make them safer as well as eventually learning how to treat this terrible disease. So with Dr. Cantu, I founded Concussion Legacy Foundation in 2007 and eventually partnered with Boston University to bring in world-class neuro degenerative disease researchers.

My Elite Network: Chris, you have an interesting story. You went from being a Harvard grad to being a wrestler. Tell us a little bit about your background, and how you made the transition.

Chris: Sure, my first job out of college was actually as a consultant in the pharmaceutical and biotech industry with a firm called Trinity Partners, and the owner of the company and I were both wrestling fans. It came up over a lunch conversation that he thought that I should take a try at becoming a professional wrestler and that he would keep my job warm for me. So the owner makes a couple of phone calls because he had friends in the business, and suddenly I had a tryout with Mr. Wonderful at the WCW power plant. Eventually, I started going to Killer Kowalski’s wrestling school at night, and made it on Tough Enough and then made it to Monday Night Raw very quickly.

My Elite Network: So you found out you were pretty good at wrestling?

Chris: Yes, it turned out to be an enjoyable career, and I was able to meet some of the most interesting and entertaining people you’ll ever find. Unfortunately, a concussion ended my career in 2003. But it wasn’t just the concussion. The concussion wasn’t the problem. The problem was I didn’t realize that concussions mattered. I got kicked in the head by Bubba Ray Dudley and blacked out in the ring and forgot how to finish the match. I had a throbbing headache, and I wasn’t honest with the medical staff about how bad my head hurt, so I just kept wrestling for weeks, feeling sick the entire time.

I developed sleepwalking; REM Behavior Disorder. When I went to sleep in a hotel room after my last match, I woke up on the floor of the hotel room with a broken night stand and lamp, and a screaming girlfriend who woke up to me standing on the bed acting out a dream that she couldn’t wake me up from. I eventually jumped head first into the wall. That was my clue that I needed to go to the doctor. I was too scared to go back to sleep, so I showed up at the doctor’s office the next morning and told them what happened. I wasn’t going to go back in the ring until they figured it out. And, unfortunately, I just never really got better.

My Elite Network: On the Concussion Legacy Foundation website there’s a section called Tips for Daily Living which lists five things a person with CTE can do. The list includes: write things down, develop a routine, control impulsive behaviors, self-regulation, and seek out family and friends. Explain how those simple tasks might not be so simple for a person with CTE, and how family members and friends can help without being overbearing and naggy.

Chris: There’s a lot of things people can do to try to live a better life with CTE. Sometimes certain tasks will get harder as time goes on. In the big picture, we don’t yet have effective treatments for CTE. We can certainly treat symptoms, so anyone who suspects they have CTE should see a doctor who has experience treating similar neurological disorders. Try to accept help when family or friends offer because no one should have to face any neurological disorder alone. You may want to isolate yourself, but isolating yourself isn’t healthy, so reach out to people, tell them how you’re feeling, and let them help you.

A recurring issue we hear from patients is they feel impulsive; they get angry quickly. It’s vital to learn how to control those urges that everybody has, it’s just that you may have more than you’re used to. Controlling angry outbursts can be the difference between keeping a job, maintaining a relationship or losing everything. Accepting help from others is not a sign of weakness. We all do it every day, and suspicion of CTE is a good reason to do it.

My Elite Network: Sometimes the angry outbursts scare the people around that person, so how do you work with the wives, kids, parents, and other family members?

Chris: We’re working hard to build up our CTE resources online with videos and FAQ’s with more ways for families, especially wives, caregivers, and children to learn how to deal with a family member who may have CTE. Everybody who emails us, we email them back, and we’re often giving referrals for doctors and trying to connect family members to other families dealing with the same thing. Our goal is to build the community because we’re so early in the fight that there aren’t a lot of resources out there for people to gather. We’re also learning from our 400+ brain donor families about their experiences so we can learn from those we’ve lost to try to help those who are still with us.

My Elite Network: You’re the author of the book Head Games: Football’s Concussion Crisis, which has been adapted into a documentary. Tell us about what the book is about and what prompted you to write the book.

Chris: The book describes my experience with my post-concussion syndrome, my journey to understanding what was happening, and what it meant for other athletes. So it tells my story, and then tells the stories of dozens of other athletes who were kind enough to share their experiences and help me realize I wasn’t alone. The book is also a review of concussion research. I used to go to the Harvard Medical School library and photocopy all the concussion studies that were published before 2003 and try to synthesize them into terms that stated in everyday language what they meant.

Head Games, which has been updated as recently as 2014, also shares what I think are the changes we need to make to sports so that people don’t have to suffer from post-concussion syndrome or CTE. A lot of those changes have already been implemented, so we no longer put athletes who are concussed back into the same game, and we have limits to hitting in practice and football. It’s good to see that so much has changed so quickly but we still have a long way to go.

My Elite Network: Explain why it’s so important for parents and coaches to start at a young age with concussion safety.

Chris: The more research we do, the more we realize that the young brain is far more vulnerable to concussions, and the effects of concussions can be cumulative. The earlier you start getting concussions, the more damage they do, the worse the long-term symptoms will be. Also, it’s more likely that the concussion will severely affect your day-to-day activities, or force you to quit sports altogether. And the problem with children getting concussions is that a lot of our tools to prevent and diagnose concussions and treat them are really for teenagers and adults; the children simply haven’t been studied as much because it’s much harder to do.

We have to understand that children don’t recognize when they’re concussed, they don’t often have the vocabulary to even tell you about it even if they do experience symptoms. They might be even more susceptible to social pressures to not pull themselves out of a game. The equipment, even the football helmets, are not designed for children. They’re designed for adults. That means children have incredible disadvantages when it comes to concussions, especially in football.

My Elite Network: Do you think concussion education lies in educating the parents, the coaches, and the kids?

Chris: The reality is that everyone plays a role. The coaches control what happens on the field. They’re the first line of defense for identifying concussions because we don’t provide medical professionals for children. So if the coaches don’t know how to practice safely, and recognize and manage concussions, your child is at enormous risk.

But then again, most concussions have delayed symptoms so unless you teach the parents; they will never spot the concussion evidence when their son comes home after practice or a game. With kids, the challenge lies in teaching them how to understand concussions and appreciate how dangerous they really are. I think if parents saw the research from our perspective, and saw the long-term daily effects, I think very few would choose to allow their child to play tackle football.

So, if you want your child to play, we want to encourage the safest possible play. I’m now convinced after 14 years that the best solution for keeping football players safe is not to have them play tackle football before high school. You can get all of the benefits that we’re looking for in four years of high school football. And if that’s all you play, the risks to your long-term health are dramatically smaller than if you start at five and play through high school.

My Elite Network: What are some additional solutions to reduce the number of CTE cases?

Chris: In football, the number one way to reduce future CTE cases is to limit the number of years playing tackle football. Youth football wasn’t a big deal until the 1960’s, and I think contact sports need to go back to what it was before that time. The second best way is to limit hitting in practice. It used to be that most hits to the head would come in practice so the more we can train coaches to virtually eliminate hitting in practice, the safer the players will be. So those are the big two.

Besides that, things like educating players, so they report their concussions and realize that playing through concussions is contributing in some way to CTE risk. Adding medical professionals on the field as advocates for the players, continuing to improve equipment, continuing to change the rules of the games. There’s a long, long list of small tweaks, but the only ones that matter right now are raising the age of introduction of tackle football and limiting hitting in practice.

My Elite Network: Tell us about “Team Up, Speak Up” and how it’s having an impact on youth.

Chris: “Team Up, Speak Up” is an education program focused on changing the culture of concussions in sports that confirms what we all know from our experience, that it’s hard to recognize your own concussion and then pull yourself out of a game. And so what “Team Up, Speak Up” does is encourages the coach and the captain to kick off the season with a speech to the team that says, Number one, we’re a team, and teammates look out for each other. Number two, a teammate with a concussion is a teammate who needs your help. And number three, if you think your teammate has a concussion, it’s your responsibility to speak up to the coach to ensure that they get checked out. We’re trying to change the culture from one where we used to hide each other’s concussions to one where we’re helping each other out.

It’s part of the training NFL players now receive from the NFL Players Association. We encourage former NFL players to sign up to pledge their brain to CTE research. The single greatest program that’s helping accelerate future treatments for CTE is our brain bank and partnership with Boston University and the VA. We started with the brains of over 200 football players who are helping us understand targets for treatment, how the disease progresses, and we also share samples of the tissue with researchers around the world. Over 50 different research teams are now working on CTE because of tissue they got for free from our brain bank.

So if you want to be a part of the solution, signing up to pledge at concussionfoundation.org/pledge is a major step. We’ll send you a brochure and a brain donor card (not legally binding). The decision is ultimately your family’s, but it’s an excellent way to keep the conversation going so we can continue to increase the volume of donated brains and the research in full forward motion.