Shonali Gaudino, OT, Host, Producer, Co-Creator
Chuck Clough, Editor
This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).
A note to our listeners that today’s episode starts with an emotionally charged story describing depression, addiction, and loss.
Lisa McHale (00:00:16)
When he died in May 2008 at the age of 45, my husband became just the second former NFL player diagnosed with CTE by this research team at this at Boston University. Tom was my husband, the father of my children, brother to four siblings, and my very, very best friend. I've always hoped that sharing Tom's story will bring attention to the very misunderstood and unappreciated dangers of repetitive head impacts. I hope to help others understand just how devastating the long-term impacts of these hits can potentially be. I would hope that the awareness of these consequences will lead to a profound cultural change and how we perceive and respond to sports related and other head trauma.
So, Tom and I first met in August of 1986 as I was entering my sophomore year at Cornell University, I was just 19 years old and Tom was 23. I was a manager in charge of the defensive line for the Cornell Big Red, and Tom was one of my defensive linemen. He was kind of larger than life. He given up a full scholarship and a starting position on the defensive line at the University of Maryland before transferring to the Ivy League University to attend Cornell's top-rated school of hotel administration. He'd been described by many have at that time to have been a class all his own. He was breaking school records and earning all American honors. And when his years of eligibility were up at Cornell, Tom went on to play nine years in the NFL with the Tampa Bay Buccaneers, the Philadelphia Eagles and the Miami Dolphins.
Tom loved football, but it by no means defined him. It was his character that made Tom stand out. I never saw in him even the hint of a suggestion that he thought himself better than anyone. He filled the room with his presence and always drew a crowd around him, yet he left so many who met him with a feeling that they had been the most important person in the room, and that Tom had been riveted by whatever they had to say. It always seemed that Tom had goals for his life and he expected to succeed. He had a great deal of confidence in his abilities and he was proud of his accomplishments, but he never allowed success to go to his head. He always maintained that the ability to play football at its highest level is a God-given gift and that he was grateful for that opportunity.
Tom was passionate about life. He had a beautiful smile, and he smiled often. He loved music. He was fascinated by world history. He was enamored by and gifted in the art of cooking, but most of all, Tom was passionate about his faith, unswerving in his desire to do what is right and extremely devoted to his family, incredibly loyal to his friends.
Tom and I were married on February 3rd, 1990. We were married for 18 years. And I truly believe that Tom brought me more happiness during those 18 years than most people will experience it a lifetime. We had three sons over the years. TJ was born in 1994, Michael in 1998, and Matthew followed in 1999. Tom was devoted to his boys and they adored their father. Their coach and their hero.
That fairy tale ended on May 25th, 2008, when Tom died from an accidental overdose. It's still hard to believe it could have ended so tragically, and I still cannot revisit the memory of that day without experiencing physical pain. But truly, looking back, I realized that Tom had been slipping away from us for some time. It just became official and final on May 25th.
There is no way to adequately describe the change in Tom over the years, except to say that it was so gradual that I'm not sure when I actually became aware of it. I just know that there came a day, several years before he died, that I could no longer deny that there was something terribly wrong with my husband. The man that I had so admired had become like a shell of his former self. Almost as if the spark was slowly being extinguished and the man that remained made me feel at times that I was living with a stranger. It wasn't as though this stranger was a bad guy. He wasn't. But he just wasn't my Tom.
The man who once loved to get up and watch the sunrise had trouble getting out of bed at all, and the eternal optimist who approach goals with great confidence had difficulty following through on his most basic intentions for the day. The man who relished his friends and his family picked up the phone less and less frequently. The man who used to plan lunch while eating breakfast and planned dinner while eating lunch even began, more often than not, leaving the cooking to me. What appeared to be symptoms of depression may have first come to my attention when Tom complained one night that the pain that he lived with as a result of so many years of pro ball had become too great to be on his feet all day. He said that owning and operating risk restaurants that which he had dreamed of since he had been a boy, was no longer enjoyable. He got out of the business, but that didn't help. Eventually he got help for his depression and we hoped that that would be the answer. But it didn't seem to help. Then one day, Tom confided that he was physically dependent on doctor prescribed pain meds, and so began a terrifying and difficult battle against opiate addiction. And as crazy as it may sound, I was relieved because I now had an explanation for what had happened to my husband. And that brought me hope that I would one day have him back. I believed, I believe that Tom fought with everything he had in him to win that battle, but even in the absence of the drugs, I didn't see my old Tom return, though there were glimpses, they didn't last, and I became increasingly concerned that there was something else going on and more and more afraid that I would never have back the incredible man I married. When Tom died, I had never heard of CTE, nor did I have the slightest suspicion that the changes I had been seeing in my husband had anything to do with his lifetime of participating in contact sports. And yet, when I learned of his diagnosis and saw images of his brain, when I heard Doctor McKee's explanation of the pathological findings that Tom's brain exhibited significant pathology in areas that control inhibitions, impulsivity, insight, judgment. Memory and emotional ability. My heart ached. And for the first time, in a long time, I felt I was beginning to understand.
I often wonder what Tom would have thought if he had heard of CTE. I wonder whether it would have made a difference for him to know that his inability to live up to the expectations he had set for himself might actually have had a neurological cause. I know that for me and for our boys and for the many loved ones he left behind, knowing has made a tremendous difference. I have no doubt that I would have agonized over the years, wondering whether it was possible that CTE had been a factor in my husband's struggles, and ultimately in his death. I'm extremely grateful for the insight that his diagnosis provides. I'm even more grateful to the researchers at the CTE Center for their dedication and determination to discover how to diagnose, treat, and prevent this devastating disease so that future athletes need not experience the kind of turmoil that Tom experienced. And that their families need not endure the agony of watching helplessly from the sideline. I know that everyone who has had the pleasure of knowing Tom during his lifetime would agree what a tremendous loss was brought about by his death. It is my fervent hope and prayer that all who knew and loved Tom will help me keep the memory of him alive for our boys. So that they will remember him as he had been. And will grow up to proudly be just like their dad.
Welcome to Finding Strength. The Spaulding Rehabilitation Podcast, where we'll try to connect the dots between rehabilitation research and the people who are most impacted. This production is a collaboration between the model systems and the Rehabilitation Outcomes Center at Spaulding. I'm your host, Shonali Gaudino and today we’re talking about repetitive head impacts. Let’s start with a couple of definitions…
Dr. Daniel Daneshvar (00:09:26)
A concussion is a hit to the head that results in signs or symptoms of brain injury. Those could be things like difficulty concentrating. Blurry vision or double vision, seeing stars. The one that's most apparent is loss of consciousness, but really any indication that your brain isn't functioning the way it's supposed to is an indication that you might have a concussion.
CTE is a neurodegenerative disease that's characterized by a specific misfolded protein in the brain. It can only be diagnosed at this point after someone passes away based on a specific stain looking for that misfolded protein. But what we are increasingly aware of are certain set of characteristic symptoms that appear to be closely linked to. CTE pathology. The most specific of which is cognitive impairment, which is problems in thinking and memory.
That voice, Dr. Daniel Daneshvar, Director of Training at our Outcomes Center, studies these challenges. His latest paper shared a revelatory finding: it’s not just concussions that put people at risk for CTE – it’s also non-concussive hits, and their collective force over time, that ends up being deadly.
Dr. Daniel Daneshvar (00:10:24)
For this study, we built on the incredible brain bank that was started by Doctor Ann McKee at Boston University and still is led by her. We published the largest study of neuropathological evaluation of football players ever. Over 650 former football players at all levels whose brains were studied after they passed away.
Football provides a unique context for studying hits the head because people get exposed to different forces and types of head impacts based on the positions they play and based on the level that they they're playing at. So, for example, we'd expect a quarterback playing in high school to get very different kinds of hits to the head than a offensive lineman in college.
And so, we utilized helmet sensor impact information that's been accumulated over the past 20 years across 26 different studies. And we combined it looking at the average characteristics that athletes got in terms of head impact exposures based on the level that they played and the positions they played. And we projected those data onto the 650 plus athletes who passed away to get an idea of the types of characteristics of the head impacts that they might have been exposed to based on the levels and positions they played. This way of calculating things is actually not new. It's existed in the occupational exposure and epidemiology space for decades, but this is the first time it had ever been applied to football.
It took me a while to absorb this, so I’ll repeat it for you in slightly different terms. He’s saying that they used helmet sensor data to map out the kinds of hits people are expected to get. And then used that knowledge when looking at 650 brains of football players after death. By doing this, they could make connections about what kinds of hits actually led to various levels of brain degeneration. But before we dive into their findings, let’s talk first about the brain bank itself. The UNITE Brain Bank is the largest tissue repository in the world focused on traumatic brain injury and CTE. Lisa McHale, the voice you heard at the top of the episode, works there as the Director of Legacy Family Relations.
Lisa McHale (00:13:13)
Essentially, whenever a family donates a brain for the research, once the tissue is received, the family is introduced to me as their point of contact. I review our research protocol with them and how they will learn findings and most importantly, how they can play a critical role in this research. Not only are we able to study the brains to determine what, if any, pathology is present, but it's so valuable that we also capture very comprehensive medical and clinical and exposure histories on these donors. So, the families play a very critical role in this research.
Is Tom's sample still in the bank?
Lisa McHale (00:13:57)
It is. It is. Yes, all of the many families ask. So once your study is completed, what happens? What happens with my loved one’s brain? And we assure them that their brain is kept in optimal condition in perpetuity, because it does continue to contribute to very important research. Yeah, it’s very comforting to me that, you know, he's he's done a lot and he continues to contribute.
So, back to the findings. By crossing helmet sensor data with these brain donations, what did they learn?
Dr. Daniel Daneshvar (00:14:29)
We found that it was the total force to the head, both the linear force and the rotational force that best predicted whether or not someone had CTE. And if they had CTE, how severe the CTE was.
The story all along has been about, you know, in popular media and in the average household, the story becomes about professional football and concussions, but that's wrong, is what this is finding, right?
Dr. Daniel Daneshvar (00:15:00)
Yeah, the, I mean the the movie was called Concussion, but you know, even then we realized that so. So, for example, an average offensive lineman who gets a concussion in a season. We can look at the total number of hits they had over that same season and we can say that person on average experienced 334 hits to the head. That were of equal or greater force. Then the force that gave them that resulted in the concussion. And what these data suggest is that all those hits matter. If you're getting a really hard hit to the head, it doesn't matter whether or not you have symptoms in regards to CTE risk. What matters is that you got hit in the head and that was a hard hit.
Dr. Daniel Daneshvar (00:20:08)
One of my mentors, Bob Cantu often says your brain doesn't care what hits it. And so, if you're getting hit in the head repetitively with high forces, what this study tells us is that you're at risk of developing CTE. And so that could be from other sports like hockey. Or boxing. That could be from non-sport, occupational or other exposures. In the literature, famously, there was a circus clown who was shot out of a cannon over and over again that developed CTE. It could be in our military servicemen and women. It could be in victims of domestic violence. If you're getting hit in the head repetitively. The forces associated with those hits at the head puts you at risk of CTE and it's why we should, when we should be considering CTE as a possible problem for you.
Dr. Daniel Daneshvar (00:21:42)
What this paper allows us to do is to start to characterize. Exposure using these well-defined epidemiologic methods. Characteristics like the number of hits, the linear force associated with the hits, the rotational forces associated with those hits. This study I think was a a starting point. Once we have better data, we're going to start looking at different thresholds of hits. For example, is a 15G impact, which is a little more than a fighter pilot rolling in a plane. Are hits above that threshold different or more impactful than, say, A 30G threshold, which is like a car driving at 25 or 30 miles an hour into a wall? Versus say like an 80G impact threshold, which is where an average concussion occurs.
Lisa McHale (00:17:18)
I'm just curious when you looked at position did you use each player's primary position, or if they did play both sides of the ball throughout, say, high school, did you did you include that? Did you, you know, essentially add that force together?
Dr. Daniel Daneshvar (00:17:33)
Yeah. So, so when we look at the forces, we averaged forces for people who played two positions in a season. So, for example, I played two years of guard in youth football and I played two years of linebacker in high school. So, when I did all the analysis, just looking at primary position alone, there was no relationship between primary position and CTE risk because the way we'd normally characterize it is 2 years at the highest level that you played. But that doesn't characterize the entirety of my exposure. And so, to your point, people are constantly switching positions in football. They're oftentimes playing multiple positions in a different season, and I think that's what's being captured. When we look at the total force. In a way that looking at highest level and primary position by itself doesn't capture. So yeah, if someone played multiple positions, we averaged all those positions together. And as they changed. Positions over time, we took all of that into account.
Lisa McHale (00:18:31)
But, real quick. So, if you average let's say you played offensive line and defensive line in a season. So, he was playing that's double the exposure in in my mind, right? And special teams? If you're just averaging what an offensive lineman and a defensive lineman would, that's sort of halving their risk, is it not?
Dr. Daniel Daneshvar (00:18:53)
You're absolutely right. For games, it'd be halving their risk because they're playing both sides of the ball. They're on the field the entire time. For practices, what typically happens is you bounce from one side to the other side and you know we know that the majority of hits are happening in practices.
So, for this study we averaged but because we didn't have detailed information about how much each person played each position each season. But for our studies looking at players while they're alive. We have a different model where we take into account exactly what you're talking about. We ask athletes, ok, so when you played in high school and you were a guard and a linebacker, what percent of time were you on the field as a linebacker? What percent of time were you on the field as a guard?
So, we know that we that our number right now is a guess, but at least it gets us closer to the real number. And along those same lines, the guy who played football like me the you know second string not so not so good guy. I didn't play as much in each of those years I played as someone who ended up going on to the pros. That person who ended up - the Toms of the world - there wasn't a minute in high school where he was not out because he was probably the best player that highschool's ever seen. Right? I think that's actually in part why we see a small effect. Of the highest level that someone played. Being associated with CTE risk. Even when you account for the total force to the head that that person had, and it's probably because our model is just looking at total force, assuming the average player in the average year. But those guys who go on to the highest levels of play. They weren't the average player in the average year, and so the model isn't accurately taking that into account.
Lisa McHale (00:20:47)
That makes sense. I'm forgetting that it's only in games that you can play both at practice. You're either playing one or the other. And yeah, I hadn't. Seems you've thought this through very well, Dan.
Lisa, I'm curious about you and your history with football. It sounds like your kids don't play
Lisa McHale (00:21:02)
Yeah, I mean the fact that my kids did not play is one of the things I am most grateful for in all of this. They thankfully do not have their father’s exposure history. But yeah, I mean certainly it's been a a big transformation football was you know, was our world for so many years. First Saturdays when we were at Cornell together and then Sundays. For many, many years, were all about football and all of our friends were in the league and you know, everything was revolved around the sport and for many years after that. It would be unlikely I could turn on a game and wouldn't know at least one player on on one of the teams fairly well. Tom actually loved playing the game. He was bored stiff watching the game. And so, it would not be uncommon on Sundays that we would be watching a game and he would flip over to the cooking channel. So, we didn't tend to go to games once he retired. But still you know. We always imagined sitting in a college stadium one day and watching our sons play just because it tends to be the case that when dad's a good athlete, sons follow in their footsteps. We'll never know but. But I mean it all obviously changed with CTE and the knowledge of CTE and there's no way for me to enjoy a game the way I used to enjoy a game.
I won't say that I that I don't watch football. I get the love for the game, but when I watch a game, I notice every hit. I notice they're happening on every play. And while I used to think, oh, these guys are on top of the world, that it must be amazing. Because I mean you, you're just I mean your celebrity status, right. And you're having the time of your life.
I can't see it that way anymore and I really feel I worry very, very much for the future of everybody on that field. I would never watch a high school game, a youth game or anything. I watch very, very little pro, no interest in it. But. I'll watch college games, particularly with alumni of, because I I love more the social aspects and how fired up people get around the game. But I wish it could be another sport that could take the place over that kind of passion so that we don't have to be jeopardizing so many people's futures for entertainment.
It's hard to see it ever going away or being replaced, but we hope that some of this work makes it safer and gets us to a place where you can play without. The increased risk of extreme health issues down the line, so.
Lisa McHale (00:23:36)
Absolutely. That would really be my, you know, my hope that. While learning what we are about, these risks that we can make, that there are such significant changes to the game and they are at the pro level, they're making it about as safe as they can, right? The way they've restricted full contact practices to - what is it - 16 throughout the entire season, whereas when you know the entire time, my husband played, there were two or three full contact during the week that that much longer practices when he was a rookie with Tampa Bay, they had three a day practices for and the preseason was a lot longer in those days and that's in the Tampa heat. I mean it's crazy the difference is so yeah, I I think that my hope would be that. If you're limiting the duration and the and the number of full contact practices in high school, you only play one way. You can't stay in the entire game, no offensive and defensive and special teams. No off-season full contact. You know, you put all these things into effect and my hope would be that that that that millions of children can continue enjoying high school football without the risks of long term, you know, long term repercussions of CTE and other.
Lower the risk and make it an informed risk, right?
Lisa McHale (00:24:55)
No question, I think that's critically important.
Dr. Daniel Daneshvar (00:24:57)
But I'd argue that there are certain levels at which you can't have informed risk. I don't think that a six-year-old can provide informed risk for neurodegenerative disease later in life And so I I think absolutely, especially when talking about the college or the pros. Them having more information allows them to provide consent and have knowledge of the risk that they're undertaking. But you know at the, you know, extreme youth levels. I don't think that there is there's any amount of knowledge transfer that makes it OK for them.
The day we recorded this episode, Dr. Daneshvar was excited about a bill making its way through committee in California, that would ban tackle football below the age of 12. If it passed, it would be the first law of its kind in the country. It was especially meaningful in light of his recent findings, that it’s the cumulative hits over the course of the lifetime that are truly dangerous and chopping off a few years on the front end could go a long way in disease prevention.
Dr. Daniel Daneshvar (00:26:03)
And the remarkable thing most of the people that we talked to, who play football at the most elite levels, they tell you that the skills that are being taught at the youth football level often need to be untaught before people can continue on at elite levels. And so understanding the mechanics of the game through something like flag football and then transitioning to contact football when you're physically able to to understand the game and to to play at an elite level and understand how to deliver and receive contact that makes more sense.
Lisa McHale (00:26:42)
The only thing I would add to that, Dan, is that the critical, the critical thing you said is parents who are paying attention. I think that unfortunately, there are still too many parents that are uninformed and that's why you still have, what, 70 to 80% still still playing contact sports as youngsters?
Dr. Daniel Daneshvar (00:26:57)
Yeah, yeah, I think you’re absolutely right. You know of the 4 million or so football players that play football every year in this country, only about 3 to 4% are playing at the college or pro level. So the vast majority are playing high school or lower. So, for that 96, 97% of football players, if you didn't introduce tackle football until high school. You'd be limiting the maximum duration of exposure to head impacts to four years. And that's less than the threshold we think is necessary to cause problems later in life.
Days later, while editing this episode, Governor Gavin Newsom of California released the following statement: “I will not sign legislation that bans youth tackle football. I am deeply concerned about the health and safety of our young athletes, but an outright ban is not the answer. My Administration will work with the Legislature and the bill's author to strengthen safety in youth football — while ensuring parents have the freedom to decide which sports are most appropriate for their children.”
Oftentimes I think we pit pro Football and the NFL against this type of work because people love football. People love watching football. People don't want to destroy this sport that is so embedded into our culture.
Dr. Daniel Daneshvar (00:28:26)
Well, I mean, it's honestly never been safer to play football at the professional level. Right now, the number of contact practices are limited at the professional level, there are many doctors on the sidelines and athletic trainers monitoring these athletes to make sure that they're getting immediate evaluation and and care. And are there mistakes made? Certainly. Sometimes you know, there are concussions that are missed, but for the most part, there are a lot of eyes on these guys making sure that they're being taken care of again, more, more closely monitored than they've ever been in the history of the sport. The problem is that that's much less the case when you're talking about the college athletes and forget about when you're talking about high school or below high school where you know, oftentimes there's not even, you know, an athletic trainer for all the teams in a district. Forget about on the sideline of every single game.
Dan, you played football. Would you be eligible to donate your brain? To this bank.
Dr. Daniel Daneshvar (00:29:27)
We used to accept anybody who had played, but unfortunately, there are just too many people who played football and so we set different criteria. For levels of exposure to donate, so originally, I was a brain donor, actually, and so I signed up. I think I no longer qualify because I got in too old, but I I also think that I'll age into another cohort where my brain will be valuable again. But right now, I'm in this middle period where I didn't play quite enough and I haven't lived quite long enough to be useful. So we'll see. But I hope to still use this brain for a little bit longer, so yeah, so we'll see.
So, looking forward, what do you feel like still needs to happen? You talked a little bit about regulations. What else should be happening in the future at a systemic level? Certain education programs, any changes to the professional football level? What do you guys want to see happen?
Lisa McHale (00:30:28)
I would love to see the NCAA go the route of the NFL in in minimizing the risks and that would be Nice. You know, the Ivy League schools as a result of learning of, of what's being found through this they they banned full contact. Practice throughout the regular season that came down from the A unanimous vote of the coaches. I think that's a tremendous thing to protect the futures of those young men. It would be nice, certainly, for the NCAA to look at that model and consider something similar. And then, of course, down more importantly, even at the high school level, I I do believe they still most schools still have full contact during the offseason. There's all kinds of things that could be done to mitigate risks for high school level and then yeah, and youth, my opinion is they should be playing flag until high school anyway so. There, there are many, many, many, many things that can be done to reduce the risks of this disease and still allow you know those that you know this is their sport. They really want to play. I'm hopeful that could happen if people are willing to make these kinds of changes.
Dan, anything from you to add?
Dr. Daniel Daneshvar (00:31:32)
Over the last 15 years, I've learned that, you know never to say, to contradict, or at least so when she's when she's right. So, it's absolutely, I completely agree. Yeah, it's. Yeah, I think that the, as I said before, NFL has never been safer. But that doesn't mean that it can't get better and the the changes that the NFL has made, they need to trickle. Down and and the lower levels need to start adopting many of those same changes.
Thanks for listening. Lisa McHale works for the Concussion Legacy Foundation, where you can find resources at concussionfoundation.org. Dr. Dan Daneshvar is a physician and researcher at Spaulding Rehabilitation.
If you've enjoyed this podcast, please know that liking, subscribing, and sharing is essential to sustaining our work. The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Spaulding-Harvard Traumatic Brain Injury Model System, the Boston-Harvard Burn Injury Model System, and the Spaulding New England Regional Spinal Cord Injury Model System Center, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general informational purposes only.
I do want to say that I'm sitting here listening to Dan and thinking, Holy Cow, how is somebody so eloquent on all of this? And why do I not have you before our legacy family members more often? I'm sorry that we're going to miss you at the huddle, but I'm going to absolutely insist that you come to the next one in two years, Dan. Because I'll tell you that study is not an easy one to present in such a way that I I totally get it. So, I I've known you for many, many years, but I don't think that we're taking full advantage of your gifts with regards to in. In many ways, I'm going to have to. Talk to Chris about that.
That is way too kind I I. Think that I've I've learned so much from you over these years and it's just I actually. I mean. So, I started doing this work in my mid 20s. And you know, when I first met you and learned about Tom, that story cuts your life story cuts so differently now that I'm in my 40s. UM and. It's just remarkable how how much you've done to to change the world really, and to support these families, and to do so much good out of something that's, you know, tragic. So I really admire you.
I appreciate that. I kind of say it. I I do look back and marvel that God, I was 41 when Tom died, right. And and responsible somehow for three young men, the oldest of whom had significant special needs and thinking how the heck am I going to do this? But I'll tell you I if I had one word to describe. How I feel about? All of this, it would be gratitude that that I've had the opportunity to kind of hitch my wagon to this research, to appreciate just how monumentally important this is. So I wouldn't say I'm changing the world, but I knew enough to get involved with those that that I knew could and would. And. Yeah, and that's that's a tremendous gift.