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The HeadRush Podcast with Paul Frase and Corey Berry takes you inside the reality of Chronic Traumatic Encephalopathy (CTE) through the lens of football and rodeo. With firsthand experience in two of the most punishing sports, Paul and Corey share their stories, the lasting effects of head trauma, and the fight for awareness and support.
0:10This is the Headrush Podcast with Paul Frase and Corey Barry.0:17Welcome to the Head Rush podcast. I'm Paul Fras and I played 11 years in the0:22NFL and our co-host Corey Barry rode professional rodeo for nine years.0:28
You said it right this time.0:29I did. I didn't say play. You played rodeo.0:31I never played rodeo.0:33You you rode ro How many uh uh arenas have you been through uh uh out the out0:39out throughout the United States?0:42Oh, hundreds. Didn't tell you0:43hundreds.0:44Oh, yeah.0:45All right. All right. Well, at the HeadRush podcast, we talk about0:49everything related to brain trauma and brain health and wellness. We focus on0:53traumatic brain injury sustained through repeated head impacts RHI and repeated0:59blast exposure RBE for our men and women who serve in the armed forces. We talk1:05about traumatic encphylopathy syndrome TEES and we talk about chronic traumatic1:11encphylopathy CTE. We cover how traumatic brain injuries can and will1:16cause mental health issues such as depression, addiction, lack of executive1:21function, memory loss, even suicide ideiation as well as degenerative1:26neurological issues. Our mantra is how to cope and find hope. And we focus our1:32energy on finding the therapies and sharing hope through education and by1:37raising awareness. And please share, subscribe, and uh like and help us1:43spread the news of the dangers of repeated head impacts. Corey,1:49you know, today this is a1:53special episode for our followers and people that listen. A little over2:00a year ago, we had an episode about a bearback rider2:07that ended up committing suicide. And we had Casey Kennedy on, Jim Bob2:14Kuster on, and I can't remember Kelly's last name, but Kelly was on, too. And uh2:22talking about the ramifications. And today we're going to be talking2:28about what was done with the brain, how it was studied, and with that the2:35conclusion kind of the what was2:38I I we'll ask Casey and his family closure. Closure.2:43Yeah. Closure.2:44And so our guest today is all the way one of the guests is all the way from2:50the University of Pittsburgh. Dr. Julia Coffler MD is an associate professor of2:56pathology division of neuropathology where she is also a member. Her clinical3:03expertise includes surgical neuropathology3:09autopsy pathology neurodeenerative diseases. She is also the co-director3:15and neuropathology core leader of the University of Pittsburgh Alzheimer's3:20disease research center ADRC director adult pediatric3:25neurodeenerative brain bank Alzheimer's diseases and related dementias ALS3:32movement disorders traumatic brain injury and chronic traumatic and3:37sephylopathy and what's that other one3:40lucodistrophies I leave. I'm glad you're doing this and3:44not me. There's a lot of big words in here.3:46And she's also the director and3:50uh neur neurohistologology laboratory. The dire and neuropathology3:56consultant for the Pittsburgh NIH neurobrain bank. Welcome Dr. Coffler.4:03Thank you for having me.4:05That's a lot to say about a doctor. you and Jeremy Tanner and Ann McKe, y'all4:12got that that list upon list upon list and and what what are our postnominal4:18initials after our names?4:20BS.4:24Okay. Is that a bachelor bachelor of science?4:28No, it's4:29we can go with that.4:30Okay. And our other special guest has become a very dear friend of mine4:37and the son of rodeo cowboy Pete Kennedy who we lost tragically to suicide over a4:44year ago. You may remember we spoke with KC about his father and Casey had his4:51brain donated to the University of Pittsburgh and Dr. Coughler4:56is the pathologist who actually performed Pete's autopsy.5:02Welcome, Casey, and thank you for coming back on.5:06Thank you, brother. Thank you guys for having me back on.5:08Yeah, it's it's it's a pleasure and we we this is a sensitive uh subject for us5:14all and we really want to take every precaution to honor your father Pete5:21Kennedy's memory. And um so for anyone listening this this may get graphic. We5:28will be mentioning suicide and um this is a discussion of an autopsy5:35of the brain and we will uh uh we might we're going to talk about a lot the5:42hisytologology of repeated head impacts. So Casey, thank you for coming on and5:50talking with us and bringing us full circle to the conclusion of research on5:56your father. Um what does this kind of do for you? Uh6:02before we our next question is going to be okay Coffler walk us through from the6:06time you got notified to the results but what talking with Coffler a month ago6:15what what did this do for you your mom and your grandmother?6:21Well I think it brought a significant justification to prolonged suspicion.6:26you know, these things 10, 15 years ago were obviously in their infancy and6:34there was always suspicion but there wasn't a lot of public knowledge on6:37repeated head impact CTE and things of that nature and as we watched my father6:42decline over the years and there was a lot of confusion and like the previous6:47episode I had discussed my father went from Godloving family man to6:54going way off the grid spending a lot of time alone doing a lot of6:59uncharacteristic things. So, we always kind of had our suspicions. So, when Dr.7:05Coffler got back to me with the results, it it brought I wouldn't say closure,7:10but kind of a justification for the things we experienced. For sure.7:15That's that's a great uh uh word justification because going through it,7:21did you have and I I know you said things were different, but did you ever7:27relate it possibly to repeated head impacts?7:33Well, like I said, you know, there were suspicions but not a whole lot of7:38knowledge. And my father always kind of spoke about, you know, how many7:44concussions he had, how many times he was knocked out, and how he thought he7:47had brain damage. And he would relay things to me at a young age that, you7:52know, things were getting worse. And um I would say7:572016 or 2017, there was a a professional bull rider that had passed away and they8:03did a study for CTE on him. And Corey, correct me if I'm wrong, but I think he8:08was documented as the first professional bull rider diagnosed with CTE.8:13He's not the first. Tai Posibon is who you're talking about. And please go8:17check out the Tai Pabon Foundation. Um, great foundation, but he is the first to8:24come out publicly. I have known Cowboys before and after that have come out to8:31be CTE. And I don't know, maybe even Dr. Coughler has studied a rodeo cowboy in8:37the past. Maybe that'll be a question we ask her.8:42Yeah. But I would say 2017 when those things went public, it's like, okay,8:49this is real, you know, and my my dad had a variety of neurological8:54appointments his last 10, 12 years of his life. And uh the suspicion was9:00always there, but once you see that in the paperwork, the results, it's like,9:05wow, this is real. You know, this isn't a this isn't a bad dream or anything.9:09This is this is what really happened.9:13Dr. Coffler, we so appreciate you joining us and and and and shedding9:18shedding so much information about this, but uh we want to get right to the9:22point. Um, can you please share your findings9:27um with the p the pathology of uh Casey's father's brain, Pete's brain,9:33Pete Kennedy's brain? Did Did Pete Kennedy have CTE? Well, before you9:39answer that, let's walk from the moment Casey called you9:44and donated the brain up to what you did, how it was handled, what was done,9:49and walk us through the process, and then the findings you found.9:54Yes. So, um, Casey's family reached out to our concussion clinic where he was10:00followed, uh, for in the past, uh, for several concussions he had. and they10:06know that I run a um that I'm interested in CTE and have a brain bank focused on10:12this disorder. So they asked me if I would be willing uh to accept his brain10:17into the brain banging. It was a little logistical challenge because he did not10:22die in the vicinity of Pittsburgh, but we were able to find a local facility10:27where they were able to remove the brain for us and then have it sent to us uh10:33where we then did the further examination.10:38and10:39and and what did you I mean obviously there's there's so many things that you10:43found um10:45how do you go about what's the next steps after you get the bank walk us10:49through what you do the steps you took and then tell us the conclusion and10:53everything you come up with please10:56so our standard workup is uh the first step is what we call a gross examination11:01this is where you look at the brain um with your naked eye without a microscope11:06look at any uh lesions that are visible with the naked eye. Uh for example, we11:12look at the brain weight to see if there's evidence of atrophy, if there's11:16any evidence of visible injuries. Um um there also u with CTE for example, there11:23are some um signs that sort of uh have been associated with CTE. for example,11:29enlargement of the ventricles or uh formation of a sort of a cavity uh11:35within the ventricular space and then uh we document all of these um things and11:41then um take um sections for microscopic examination and that's really the most11:49important part for making a diagnosis of CTE. So anything that you see with the11:54naked eye is sort of like subtle clues but it not allows doesn't allow for a11:59definitive diagnosis. So for a definitive diagnosis uh microscopic12:03examination is needed and what we're doing for that is we stain the tissue12:09with multiple different dyes that allow us to recognize specific uh features and12:15specifically what we're looking for is for the buildup of abnormal proteins in12:20the brain. So most uh neurodeenerative diseases like Alzheimer's disease or ALS12:25or frontal temporal dementia are characterized by the buildup of specific12:30proteins in the brain and we now have specific antibodies that allow us to12:35recognize these proteins in the brain. Uh so we do a screening for all the12:40common diseases in every brain that we receive in our brain bank. Um and then12:47uh we look at these sections under the microscope and what we're looking for is12:51first of all is this protein present or not and then the second question is what12:56is the pattern or what cells are affected? What brain regions are12:59affected? Uh because each disease uh has a characteristic pattern. Uh so one of13:05the problems is that uh proteins are not entirely specific to one disease and13:11this is especially the case for tow um tow is the protein that's building up in13:16CTE but it's also building up in a number of other diseases including13:20Alzheimer's disease and in several forms of from the temporal dementia. So we are13:24looking for a specific distribution of those towel uh aggregates in the brain13:30and CTE has a very characteristic pattern and that's important for Casey's13:36uh uh of Pete's brain because he was borderline for CTE pathology. So we were13:43not able to give him a definitive diagnosis of CTE because he just did not13:48fully meet the diagnostic criteria for CTE. Um so we did find the buildup of13:55tower in the brain uh and it did not uh build up in any uh pattern that was14:01diagnostic of another disease. So it was very suggestive of CTE but it just did14:05not meet the current diagnostic uh criteria.14:09So one one of the things that I've just come across and it's very juvenile but14:14the the sul the val valley valleys uh I've heard that towel in CTE is14:21congregates in the sulkal valleys way down in the valleys of the folds of the14:25brain. Um and that's so these disease states are called tow or towologies I14:32guess you would you could like Alzheimer's I'm sorry14:35they're called towopaththe towopathies. Thank you. Towopathies. So um so14:41Alzheimer's is it is it all caused by a phosphorolated tow P tow in like in the14:49cell? Okay.14:51So you you did you find some you did find or did you find some indications of15:00the tow in the sul valleys but you just it was not definitive enough. And did15:07you also and also did you find uh tow in areas like could you associate it with15:15Alzheimer's or Parkinson's or another towopathy?15:19Okay. Yeah. Let me walk you through what's needed for a definitive diagnosis15:23of CTE. So already pointed out correctly we need to have aggregates of tow at the15:29depth of these valleys which are called salsai. In addition to that, these15:34aggregates need to form around blood vessels. So those are the two required15:39features to make a diagnosis of CTE. And in addition um to that they just um so15:46um the gray matter or the what we call the cortex of the brain is this is where15:51the tow pathology is has multiple layers and we want to see these aggregates at15:56deeper layers. Uh so those are all requirements for making a diagnosis of16:01CTE. And in Pete's brain we had pervascular aggregates. So these16:05aggregates around blood vessels at the peaks of the of those poles instead of16:10the depths. Um we did have a little bit of pathology at a single um valley but16:18it just very superficial and was mostly uh globally not neurons. So again it was16:24not meeting the criteria that have been outlined by a consensus group. Um that16:31said uh those features do not fit any other topathy either. So it's not uh he16:38didn't have any towathology that we see commonly with aging. It did not fit the16:44pattern of Alzheimer's disease either. So it's not that we have a better16:48explanation for it. So, um, it was, uh, for me really just suggestive of CTE,16:55but not fully diagnostic.16:57If you've been told is all in your head, but deep down you know something is17:01wrong, listen closely. Brain fog, depression, anxiety, irritability, even17:07PTSD. These are not just mental issues. They17:12may be signals of neuroinflammation and hormonal disruption, root causes that17:18traditional medicine often ignores. At the Millennium Health Centers, founded17:23by Dr. Mark Mark Gordon, they have helped veterans, athletes, and everyday17:28people restore brain function using a medical process called the Millennium17:34Protocol. Take their free brain health assessment at tbhelpnow.org17:39or and discover if inflammation, not weakness, is holding you back. You're17:46not broken. You're unbalanced and balance can be restored. With the17:53autopsy of the brain that you done, you see damage to the hippocampus. You see17:59damage to all the stuff around it. And there's no other diagnosed but repeated18:08head impacts that would cause that kind of damage. There's this is and why I'm18:15asking this is the M Parkman Foundation 15118:20two18:2115218:22and you might but you you might be very familiar with it because an McKe I know18:26you're very uh you're peers with Ann McKe and friends with her and she was uh18:32working on that this study of the 152 30 30 years and under um yeah exactly yeah18:39and so but with Mac Parkman's brain, they found significant damage that18:46couldn't be explained to anything but repeated head impacts. So, if I was to18:51ask you point blank, black and white, how it is, would you say that19:01his brain was damaged by repeated head impacts to almost CTE? I mean, where19:08would you go with this? I mean,19:10and19:11because you look at the symptoms of CTE from the Mayo Clinic, Boston University19:16website, executive function, lack of19:19the me memory loss, add addictive personality, so on and so forth.19:23So you would you say all of this that Pete was having troubles with is related19:29to the repeated head impacts?19:32That's a really difficult question to answer. First, I want to say he didn't19:35really have damage to the hippocampus. Um,19:40and if you just look at the towel pathology19:43itself, it was very focal and mild. Uh, so it's kind of hard to really attribute19:50every single symptom that he had to CTE. But on the other hand, there's probably19:56a lot of things going on following repeated head injuries that we're just20:02not good yet at uh, recognizing with a routine diagnostic examination. So there20:07are other studies going on that look at um genes that are activated in their20:14brains after repetitive head injury and those indicate changes even before20:20pathology shows up. So there seems to be other processes going on in the brain20:25that we are not able to detect under the microscope. Uh, so even though I it's20:31hard to explain all of the symptoms that Pete was experienced with this limited20:37amount of pathology was saw under the microscope, that doesn't exclude the a20:44link between his repetitive head injuries and the symptoms he was20:47experiencing. I think there's other processes going on that we're just not20:53uh looking at in our routine examinations. Do you do you think um you20:58know obviously uh uh CTE can be uh diagnosed in one of four stages, right?21:04Stage one, stage two, stage three, stage four. Um is CTE in those stages um uh21:12related or uh connected to repeat? We we know it's connected to repetitive head21:18impacts, but in21:20that's all of it.21:20Yeah. In those stages, can you say uh definitively, hey, there there was some21:27of his mood characteristics, his anger, his rage, so on and so forth attributed21:33to repeated head impacts. when you get down the road of stage two, stage three,21:38stage four,21:39his impulsivity and all of that, I mean, by what I'm21:45thinking and Casey, you can add in and maybe I'm wrong from what you told me.21:51But21:51um21:52yeah,21:53yeah, go ahead and answer that question for first and then Corey can. Yeah. So21:58um yeah when you look at the original papers from M's group there seems to be22:02an increase of behavioral symptoms as the disease pathology progresses.22:09However, there are more recent studies uh where um they looked at uh the22:16presence of CTE pathology and um cognitive and behavioral questionnaires22:24that uh they asked uh the next of kin from their brain donors and in those22:30studies there seems to be a better correlation of CTE pathology with22:35cognitive symptoms but there was no correlation with behavioral symptoms. So22:40I think um there's still a lot of open questions uh about how the presence of22:47CT pathology correlates with clinical manifestations and again it does not22:53discount a relationship between the trauma and the symptoms. It's just that22:58it's not necessarily mediated through CTE pathology. Mhm.23:05So when I talked to you, Casey, and you had that hour and a half or23:11whatever you had with Dr. Coffler at the conclusion of it all, you and your23:18grandma, um,23:22you kind of explained to me that a lot of the symptoms that you saw, Dr.23:28Coffler said, yeah, that could be associated with the damage he has. And23:33if you look at the symptom and Coffler, I'm not picking on you. Please don't23:38think I am. I'm not picking on you.23:41I hear a lot of doctors say they can't correlate mental health with CTE. Well,23:46I'll tell you, I got roughly 15,000 repeated head impacts, if not more.23:53But I never had any suicide ideiation until I got my last wreck. And since23:59then, I got suicide ideiation. memory loss, confusion, impaired judgment,24:04impulse control problems, aggression, depression, anxiety,24:10and I'm now predominia. And they say that there's no mental24:16health connected to repeated head impacts or you can't correlate mental24:20health with that's all CTE is in my book. I just read this symptoms and it's24:27CTE symptoms and that's all mental health. And so24:32what I'm saying is from the damage you seen from Pete's brain24:36and the symptoms he was having, you can correlate that to repeated head impacts24:42and say, "Yeah, most of this was caused because he damaged his noggin. He24:47bounced it off the ground too many times, bounced it off the horse's butt,24:51getting big kick."24:53I mean, can you say that? And I'm not picking on you and I'm not24:59trying to be mean, but I'm just trying to get to the bone dry. This is what our25:04podcast is all about.25:06And I asked Chrisinsky25:10when we had him on, so I'm kind of asking you what your thought is.25:15I think there's a lot that remains to be learned. Uh I think we only have um25:21several hundred brains that have been studied. many of them only with25:25retrospective interviews, not prospective data collections. Uh so we25:31it's all like uh what families observe not what the participants themselves25:36observed. Uh prospective studies are underway and I think they will um shed25:41more insights in what we know. uh mental health disorders in general very25:47difficult to study because they don't leave a telltale sound telltale sign in25:52the brain that we can recognize under the microscope. It's it's uh the same25:56for depression. It's the same for schizophrenia uh for other mental health26:00diseases. There is just not a specific protein that's building up. Um there's26:05nothing that I can look at their brain and say yes this person had depression.26:09Um, so that doesn't say that there is no connection and I'm not discounting in26:14any way what your experiences are. Um, problems that make it more complicated26:20is that as we get older, um, many of the brains that we look at from older people26:26also have other things going on in their brain. There may be Alzheimer's disease26:29pathology. There are other proteins building up in the brain like TDP43.26:34Uh, there may be um, vascular changes. um all of these things can contribute to26:41the symptoms a person is experiencing. So there may be factors we can see,26:46there may be factors we cannot see under the microscope. There may be also uh26:50other pre-existing conditions. Some of us are just more prone to developmental26:55health problems that may get aggravated by repetitive head injuries. Other27:00people's are more more resil resilient to that. And I think there's a lot of27:04factors that come into play why one person experiences symptoms and others27:09uh don't. And I think that's one of the big goals to what we want to find out is27:14like what makes someone more vulnerable uh than others.27:19So that's u we're we're we're going to go there towards the the end probably in27:24another 10 or 15 minutes. But you're what you're saying is we need a lot more27:27research done and we need we need people to join. We have made tremendous27:33progress thanks to all the families who were willing to donate their brain. I27:38think it has provided answers but it's also continuously raising more questions27:42that we need to answer. So it's a evolving topic. We're making a lot of27:46progress. Uh it's more complex than I think media often uh like to portray it.27:52It's like it's it's not as simple as having repetitive head injuries,27:56developing CTE and CTE causes symptoms. I think a lot of facts other factors28:02coming to play at each of these steps and28:05to disentangle all factors. You just need to have large numbers of brains28:10and people to study and look at and being willing to participate.28:15This episode of the head rush podcast is brought to you by our personal doctor28:20and team of doctors uh Dr. Misel Myisel Deo and she's with the Paradise28:26Behavioral Health and we are in the28:29Brainwell program which is also part of the Millennium Health Center. Uh Dr.28:36Mark Gordon, you've seen him on Joe Rogan and even on our show, the Head28:42Rush podcast. Um28:45and the hormones and Myelle is awesome. We love her. She's she's our doctor of28:53psychiatry. She works the Mark Gordon program with the hormones and uh and she28:58she adds her twist of genetics and um and it's it's it basically is melding29:06two wonderful uh uh mediums together and we're getting great help from Dr. Myisel29:12Deo. So please check out her website at paradisebehavioral.com.29:18Look up the brainwell program. get involved.29:22She's sponsoring us. They're sponsoring us for the next year. So, we are excited29:26to have them on board and uh and and shout the new the good news to everybody29:32uh that is watching these broadcasts. So,29:36is she helping you, Paul?29:37Absolutely.29:38She's helping me. So, go check her out. paradise behavioralalth.com.29:46I'm looking at if I got what is it? White spots on the gray matter in my29:51brain.29:53Yeah, white spots in the white matter of the brain. Probably29:56gray gray spots on the white spots.29:57There you go. Gray spots on the30:00gray spots.30:00White spots in the white matter. Probably that's a common very30:03non-specific finding that's very frequently seen as we get older. It's um30:10not specific to CTE, but we can see white matter changes in CTE um or people30:18bruise.30:20I look at it as like a bruise. You bruise your brain when you hit it. And30:25now you got to retrain your brain to go around that bruise because that damage30:30is permanent.30:32Am I30:34Is that a lameman term way to explain it?30:38Um it's kind of hard because I don't know exactly what your brain imaging30:42shows uh what type of like metal spots you're referring to. Um when you talk30:48about a rules to the brain, we would refer to that as a contusion which is30:53not that's a more severe type of head injury. Uh a typical concussion doesn't30:58leave any signs that you can pick up on routine brain imaging. Um, if routine31:05brain imaging picked up white matter spots in your brain, that's typically31:10something that's related to what we call small vessel disease. As we get older,31:16our blood vessels become thickened and don't provide as much blood flow to the31:21white matter of the brain, and that can cause these white matter spots. They're31:25not specific to concussions. Um, most Alzheimer's disease um patients have31:31them. In fact, most older people have them. So, this is not something31:35necessarily specific to a certain condition or exposure, but it can31:40certainly indicate um if you have them um can contribute to cognitive decline.31:48Um that has been shown for for example for Alzheimer's disease patients if they31:52have white meta hyperintensities there's more likely to have more rapid cognitive31:57decline. Uh so this by itself is a non-specific finding but that said um32:04many of the autopsy brains even in younger individuals have shown uh injury32:09to the white matter um in the form of um we call pervascular hemoceterine which32:16indicates that at some point likely blood vessels have been stretched have32:20been a little leaky um and that has been shown even in the uh in people younger32:25than 30 years old. So um the white matter is vulnerable to concussions32:32because if you compare the brain to a computer network where the nerve cells32:36are the individual um desktops or stations and then the32:42white matter is all the cables connecting uh those individual32:46computers. So if you twist the brain those cables get stretched. Uh so um32:52which what we call diffused external injury and again this is not something32:56other than in the acute phase that we can really easily detect 30 years later33:01but sometimes there's also a little bit injury to blood vessels that we can33:05still see many years later. Well, you just what you've explained over the last33:1115 minutes is uh you if I was in a meeting with you and an McKe, I would33:17probably get past the wonderful to see you. So nice to meet you. Um and then I33:24I would like what I can't imagine the talks that you guys have about33:28neurological issues in in pathology and brains. Um Casey,33:35hearing hearing all the intricacies of this, um what how what does you what33:41does that make you feel um you know regarding you know your your father's33:46demise and and over the years?33:49Well, I think what it goes to show is we need more awareness for all of these33:54things. Like Dr. Coffler was saying, you know, we need more brains. We need more33:59people to um put to rest the stigmatism of, you know, I'll be fine. I'll man up.34:06I'll, you know, Corey cowboy up and, you know, go about my day.34:10He's told me that numerous times, you know.34:15Um because there's there's such a stigmatism out there that is selfishly34:20prideful. Um, and my my father was like that, you know, he'd get these really34:26bad migraines and have these really bad episodes and it was like, "Ah, I'll be34:30fine. I'll sleep it off or, you know, I'll drink it off or things of that34:33nature." Um, but I kind of been telling myself something recently, you know, the34:39the classic saying, if you see something, say something. I like, if you34:43feel something, say something. Um because it's okay to get help. You know,34:48like like we were talking about with, you know, mental health disorders kind34:51of irrelevant to brain trauma. You know, it's very possible that my dad could34:56had, you know, some things going on that had nothing to do with getting34:59concussions, but, you know, as studies go on and more is learned in brain35:05science, um, I just hope they can start35:10correlating the two because I being around my dad so much and seeing his35:15decline and I know my family can speak to this as well, like it may not have35:20been associated, his mental health may not have been associated ated with the35:25brain trauma, but I I think it amplified it because like I said, you know, he35:30would isolate himself, he would, you know,35:35things of that nature that just aren't healthy with brain injuries or without35:40brain injuries. So having that more awareness, more understanding in35:46the public eye would go so far, but it's it's a battle, you know, and I've talked35:51to you both about it, Corey and Paul, you know, about this the social35:57stigmatisms that come with CTE and brain health.36:00Oh, dude, I'm Yeah, the looks you tell people when you tell them that yes, I'm36:06clinically diagnosed clinically. I'm saying it cougher, right? I'm clinically36:12diagnosed traumatic encphylopathy syndrome probable CTE36:18and I've had 10 years of background and 10 years of MRIs and neurological exams36:25and you name it, I've been through it. And matter of fact, I just came back36:30from getting PET two PET scans done just two weeks ago. Um,36:36and so this is why I have a tough a little bit of a tough time because I36:42directly correlate what Pete went through to getting not the concussions,36:48but the repeated head impacts and second concussion syndrome and all36:54of the stuff that goes with it. And TBI can cause mental health issues if it's37:01damaged enough. And that's where I was trying to get to Dr. Coffler on this a37:07little bit is in your pathology of Pete, you must have saw brain damage in areas37:12that could correlate could possibly correlate with some of the symptoms37:19because I don't think that Well, what did Dr. Ninsky say? I'm37:25saying it right. Once in my life.37:27Dr. Ninsky.37:28What did Dr. Ninsky say when I asked him if she CTE causes mental health.37:34Well, this is where we get stuck,37:36right?37:37Because Dr. Nwinsky and Dr. Coffler definitive questions, definitive37:44answers. We can't say definitively. But I also saw Dr. Coffler shaking her head37:52yes as Casey was talking about these things. And37:56hopefully the research continues and and and and maybe the research will give in38:03a a positive possibly a definitive someday definitive answer to the38:09correlation of Right. So38:12praying.38:13Yeah. Praying. Praying. Praying.38:15Yeah. Praying that38:17we get to that point.38:18Yeah. Well, well, to g guys like us who have uh 15 to 20,000 repeated head38:25impacts, we want this research to escalate and go forward, but it only Dr.38:31Coffler tell us how this research can maybe not speed up but how it can be38:39been be enhanced with people's involvement.38:44Yes. So um CTE is a disease that's difficult to study for example in animal38:49models or in a cell culture dish. So it's really uh I compare to a grassroot38:54effort. It needs to involve the people to actually have experience that38:59exposure. It's something that's developing over a long period of time39:03and every person has a different story to tell. Uh for example, most of the39:08research done so far has been in football players. We don't really know39:12if the disease for example has different features, different patterns in the39:16brain in rodeia riders or in people who had concussion from motocross riding or39:22other sports that haven't been so extensively studied. Um we also39:28seem to start recognizing there may be different subtypes of CP with different39:32patterns. Uh so there's a lot of um intricacies that we're still sorting out39:39at the pathology site, but most importantly, we also need to hear from39:43participants themselves while they're still alive. Uh often times a family39:48member can provide very insightful information from their own observations,39:54but it's not the same as asking a person themselves. So Casey may know a lot39:59about his bed, but he probably would have been surprised if he had a chance40:03to ask Pete directly about some of the symptoms he's experiencing. Often times40:09people with dementia or other mental health issues, trying to hide things40:13from their family. So there's a lot of value of asking people directly and40:19following with them over time to see how things change over time. So I think40:24that's why it's really important uh for people to enroll into research40:30registries or studies where while they're still alive so we can follow40:35with them. We can do additional studies as they become available and then uh if40:40they're willing to donate their brain at the end of their life then we can put40:44all of this information together. And we need that information from as many40:48people as possible because the more in people contribute, the bigger is our40:54power to do any statistical analysis and find these patterns that hopefully will40:59answer some of these questions that were raised today.41:02If you or someone you love is living with Parkinson's, MS or symptoms41:06associated with CTE, this is worth knowing. Ambio Life Sciences offers a41:12novel alternative medicine called ibo gain and operates the only ibo gain41:17clinic in the world for people with neurodeenerative disorders. Many are41:22reporting meaningful improvements in their quality of life after ibe41:27treatment. Interested? You can learn more about ibeane and apply at41:33ambio.life. This episode of the Headrush podcast is41:38brought to you by the Patrick Risha CTE Awareness Foundation. Their goal is to41:44to spread awareness about the dangers of RHI, repetitive head impacts, after41:50losing their son Patrick to CTE. Sadly, there are too many like Patrick that41:56have lost their families, jobs, and sometimes their lives. And this42:00foundation is working hard to stop the devastation then that can come from not42:06protecting the brain. This foundation provides parents of schoolage children42:12with information about the dangers of sports, concussive sports and activities42:17which involve head trauma. They advertise on social media, print media42:23and billboards. Please follow them on Instagram, Facebook, and Tik Tok, and42:29share their ads with others. And please visit their website, stopct c.org,42:36to find ways to help people recognize the disease if confronted with it in42:41their family, and how to prevent the suffering that can come to families when42:46a brain is damaged. The website has medical forms to take to doctor's visits42:53and advocacy letters if you want to help make change in your community. And their43:00most recent campaign is geared up to help coaches build brainhealthy teams.43:06You can use the information on stopct.org43:09website to understand CTE, live with CTE, and prevent CTE. Please43:16visit. Thank you. And don't knock it.43:21Stop there.43:23CTE.org.43:25Do you uh So I think we showed a website. Um was that the one that So do43:31I have to come to Pittsburgh uh Pennsylvania?43:34So there there different studies um that have a different level of engagement of43:39participants. So there's some like uh Core is participating via travel to a43:44site. You do brain imaging studies. you spend hours filling out uh giving43:49interviews, doing testing and then there are others like ours where we try to43:54reach as many people as possible with minimal amount of time or traveling. So43:59our study right now is completely online based where people provide um an hour or44:06two of their time filling out questionnaires about their medical44:10history, their trauma history, their sports participation and a number of44:15questionnaires about the symptoms that they're experiencing. We also ask for a44:19study partner who can provide some observations44:23um about how a person is um behaving in daily life and then we'll follow up with44:29our participants from uh on regular intervals to see how things have changed44:33over time.44:36So whatever someone is um comfortable with doing uh these are the different44:41levels of research participation. Um there are also different brain banks44:46that you can donate to. Um I don't the most important part is to decide to do a44:52donation. I'm not uh advertising for one brain bank over the other. I think the44:58most important part is to do uh consider brain donation.45:03Oh not healthy. I think you we the more brains we get the more it shows. And45:11I think that's an important factor. We right now there sort of um families45:16whose loved ones have experienced symptoms are much more likely to make45:21their donation because they have the caregiving stress they experienced or45:26years of witnessing their family member decline. So there's a much bigger45:30motivation to donate. But we actually need both groups because we want to know45:35and understand uh how much pathology someone can45:39tolerate without experiencing any symptoms. We want to45:44understand what makes this person different from the one who have a much45:48more um detrimental disease course.45:54Casey, we're gonna we're gonna Well, first of all, we we end the show on an45:59award of hope, but we're not going to do that yet. But we're going to give you46:02the last word. But um Dr. Coffler, you and Ann McKe powerhouses in in the46:11studies in the pathology of uh repeated head impact, CTE, so on and so forth.46:17How did you guys uh meet? Uh have you known each other for quite a few years46:21or46:23Yeah. Um so the neuropathology community is not very large in this country even46:27though it's a large country46:28and there's probably not a lot of lot of women in it either. So46:33it's increasing. So that's a positive sign. Uh so we me that I think46:37some of the top are and the top is women kind.46:40I know. I know. But but there's not a Yeah. I that's what I want to hear.46:45Yeah. So there are different working groups right now. We're also part of a46:49working group in preparation for an NH workshop that's going to happen uh next46:55year in 2027. um that again is focused on traumatic46:59and syphilopathy syndrome and also on the underlying neuropathology. So there47:04is a lot of ongoing work uh to to find answers to many of those open questions.47:11Oh yeah. And I mean the youngest person diagnosed with CTE was a hockey player47:17at 17. Correct.47:19Uh as of a year or so ago I believe that was the47:23uh I have an autopsy brain of a 15year-old. A 15y old.47:26A 15y old.47:28Wow. And47:29and you know what's funny is we're talking to Dr. Coffler and the key is47:34pretty much the leader of all of CTE right now. I mean nationally worldwide47:41and but Dr. Coffler is where it was all studied where47:48were you around47:50Dr. Ram alu and all of this this she's right where CTE started. Patrick Risha47:57he was Pennsylvania. Yeah.47:58Pittsburgh.47:59Pittsburgh.48:00University of Pittsburgh.48:01No, he was in he was well okay. His brain48:04his autopsy was autopsy.48:05Right. His autopsy. So don't knock it. Stopct.org.48:12He his brain was at University of Pittsburgh. So I mean there's a big So I48:20want to ask a question. I know48:24Dr. Maroon.48:26Yes.48:28Uh I've listened to some of his talks. What do you think about contact sports48:36and youth doctor and at what age? And do you think they ought to be playing48:40football at a young age? I'm not sure I understand the link with48:45Dr. Maroon in your question.48:48Would basically I mean he has well I don't48:53know his Yes.48:55Yeah. I don't know his stance either. I've just seen some of the interview but48:59where are you with contact sports and youth and all of that? Do you49:05are you age 14? Are you age 18? Are you any age?49:12I think uh sports are important to participate in young people. I also49:18advocate of making it as safe as possible. So I think uh some of the49:23rules that have been enforced with no tackling in younger individuals and49:28wearing helmets and impact testing and having actually uh implemented return to49:35play guidelines. So I think the goal should be not to banish sports but to49:40make them as safe as possible. Um that said there's certainly um more to be49:45learned about uh who there may be uh individuals just from their body build49:50or from their um genetic makeup that may be more resilient uh than others. So49:56that maybe in the future maybe there are some tests that should will be able to50:00show us like maybe that person is not the best one to play football. Maybe50:05that person should50:07we should encourage that kid to do more track and field or tennis or swimming50:11that's not so prone to head impact. But50:14that's still in the future. We don't have those tools yet. Um so I'm not like50:19want to banish football, but the goal should be to make it as safe as50:24possible.50:24So you're not at 14 and older for football50:28like Amy McK and Chris and all of them. You think it's okay for younger than 14?50:34I remember I wouldn't advocate for doing like tackle football and like50:39Right. That's what tackle football there. So yeah.50:42Yeah. We talk about flag football a lot to keep the head out of the equation50:45basically.50:46Yeah. Yeah.50:47Yeah. That's well that um I'm I'm totally lost my train of thought50:53here.50:54That's good for50:55Can I just say something to you? I would like to say something um just for people51:01listening. there has been a lot of sort of media um reporting about CTE and51:08there is sort of a danger of self diagnosing oneself with CTE uh and it's51:14been sort of portrayed as a fatal disease. So some I've and I'm just51:18speaking out of own experience. I had a brain donor who committed suicide who51:24was apparently experiencing some symptoms and he specifically asked for51:29having his brain examined for CTE and I think there is a danger in that um and I51:36want to raise the awareness that one should not self diagnose51:40the CTE but if someone experiences symptoms uh of depression or any other51:47neurological mental health symptoms to seek out health. There's no shame in51:53getting u mental health u problems checked out by psychiatrist or51:58therapist. There's no shame in going to a neurologist and one experiences52:02depression or headaches or or sleep apnnea. There are many explanations or52:09diseases that can confound the picture and I don't want to have more brains52:14donated to me because someone self diagnose them with CTE before seeking52:19out help.52:19Well, and that's what I really hate, Doc, is52:24online, you know, you see a lot of people and52:28even doctors are diagnosing CTE and it's like, hold it. There's only one way to52:34get CTE and you got to die. And I'm not ready to die to get CTE. I'm not dying52:41for CTE,52:43you know. And to self diagnose and say you have I am probable and I've had the52:51most tests than most people can imagine and I got miles of atrophy and showing52:59all of this that Dr. Jeremy Tanner can look at you and go and Jeremy53:07Tanner's up there with you and an McKe and all of that. He's one of the top in53:13the industry. And I'm sure he would not say Corey,53:21I'm going to give you tees probable CTE just to make you feel good. I'm giving53:27you a death sentence. I'm not sure he would do that. And for these people to53:33go out and say, "Yes, I'm tees. Yes, I'm CTE." Don't do it. Get medical help. I53:41see a psychiatrist. I see a therapist. I got two neurologists. I got all the53:47professionals.53:48Vestibular therapy.53:50Vestibular therapy. I got so much in the medical field involved in keeping me53:56normal from my hormones to my genetics with Dr. Mark Gordon and myself de Mayo54:01and now I'm starting red light therapy and I'm doing getting ready. We're going54:07and doing Ibeane in August. All of this stuff to try to help handle my brain. Do54:13not self diagnose yourself CTE. And if you're a doctor,54:19show me in the what is it? The ICD10 code where you can diagnose somebody54:26CTE.54:28I'll give you 50 bucks if you can show me a medical diagnostic code that says54:33chronic traumatic encapylopathy in the living.54:3650 bucks.54:37Got to up the antie if you're you're so sure.54:40Well, we we're positive. We're not so sure.54:42I'm on disability, dude. I can't afford anything more than that.54:47But I'm just saying you're absolutely correct. Do not diagnose. If you think54:52you have symptoms, get the help. I mean, the sad thing is is Jeremy Tanner said,54:58"We can treat the symptoms. We can't treat the cause.55:02This is a neurodeenerative disease and it it's going to happen." Now, if I can55:09find ways to prolong it happening, hey, great.55:14Slow the progression.55:16Slow the progression. But yes, you're absolutely correct. If a doctor tells55:20you you got CTE, go to a different doctor because that one's dumber than a55:24box of rocks.55:25Oh god, that you you got to love our c cowboy uh man up here. I love it. I love55:32it. I love it. Millions live with depression, anxiety, fatigue, or55:37emotional chaos, believing it's permanent. It's not. The Millennium55:43Protocol targets hidden inflammation and hormone disruption caused by trauma,55:50stress, and time. Created by Dr. Mark Gordon featured55:55multiple times on Joe Rogan and the Headrush podcast, plus the documentary56:01movie Quiet Explosions. This approach has transformed lives once written off56:08as hopeless. Visit tbial now.org and take the 10 question brain health56:17assessment. Healing is possible. Your story isn't over.56:23Let's begin again with your brain.56:26Uh Dr. Coffler, thank you so much for joining us. We end the our each podcast56:31with our word of hope and then Casey, we're we're going to come back to you.56:35Um and and I want I want you to really quickly repeat how people can get get56:41involved in in University of Pittsburgh questionnaires um you know uh in through56:48the brain bank. tell us how they can join um your studies.56:52Open up that website real quick please.56:55So but we do we do end with a word of hope as well. So uh please share that57:00with our audience.57:02Yeah if you Google national sports brain bank you will come to our website.57:06There's a registration link that will get you uh to our registration website.57:12Um, this will connect you to one of our study coordinators who will then walk57:16you through what participation our study would entail. And after that57:21conversation, if someone is interested in moving forward, you will get links to57:25our online consent form and to the subsequent questionnaires. It should57:30take about an hour maybe to to fill out and then you're good to go for another57:34year and then we'll follow up with you on regular intervals. And if you when57:38your time comes and your family is willing to participate in our donation57:42program, we would be interested in uh looking at the brain and then um tying57:48it all together with the clinical information that was provided.57:52Now I've heard somewhere and I don't know where I heard it, tell me I'm57:56wrong, but now with the donations, they also want the spinal cord and the eyes.58:03Yeah. So each brain bank has different protocols. We we are interested in uh58:08our brain bank is interested in the spinal cord. Uh there has been recent58:13autopsy studies of a limited number of uh donors where there was some evidence58:18of uh protein uh buildup also in the spinal cord. Uh so this is another uh58:23avenue that we're interested in pursuing to see how that correlates with clinical58:28symptoms and uh how that relates to concussion history.58:33So please donate your brain. Healthy, damaged, good, bad, indifferent. If you58:38can count to a thousand, if you can count to two, please donate your brain58:44to help further this process.58:45So for our study, uh, anyone is eligible who participate in any type of contact58:52or combat sports. You don't have to have a confirmed history of concussion. You58:56don't have to have been a professional player. If you have played three school,59:01three years of high school or uh even if you're in a soccer amateur league or any59:06level of participation is uh open for uh uh is good uh to enroll into our study59:13because we really want to know what risks are associated with different59:18levels of play with different levels of sports.59:21Great. Wonderful. And Casey, before I ask for your word of hope,59:27there people ain't going to see this episode until June, so it's already said59:32and done. But Casey is playing a concert tomorrow night59:38in Arizona playing music. I'm giving you a past plug. Where is it and what's59:44going on, Casey? So, tomorrow afternoon I'm playing an59:49acoustic gig at the Elks Lodge on the east side of Tucson. It's going to be a59:54really, really good time with really, really good people. It's my first gig of59:57the year. Kind of took some time off during the holidays to spend time with1:00:00family and everything. And started working on an album in February, so I'm1:00:05really excited to get back on stage and sing some good tunes, man. And I think1:00:10Casey needs to also be seen by a psychiatrist and a therapist because1:00:15Arizona just lost their biggest game.1:00:19And so I'm sure the depression is kicking in.1:00:24Oh, it's lagging. It's lid. We're We're two weeks in. I'm still I'm still1:00:29playing sad songs thinking about the season. So1:00:35what did I tell you in Zoom? I bet you you guys are gonna lose. And guess what?1:00:40You should have bet that 50 bucks on that. That's where you 50 bucks you.1:00:47Okay. Word of hope, Casey.1:00:49Man, you know, even with all this in his embassy and there's so much to learn1:00:56with the brain. I I just and I can speak for my family, too. I'm very optimistic1:01:01with with absolutely amazing individuals like Dr. Coffler, Dr. McKe, Dr. Tanner1:01:07that are really so ambitious and going after this and wanting to spread1:01:12awareness that there will be a lot more learned in the future and more families1:01:18including my own will continue to have more justification1:01:23for these very just unfortunate things that are happening in our world when it1:01:29comes to CTE. So, um like I said, if you feel something, say something. Um, and I1:01:35I know my dad would be really, really, really happy with all of this. And I I'm1:01:39very appreciative of everyone on this podcast right now. You guys have brought1:01:44a lot of I think a sense of peace and a good foundation for moving forward for1:01:50everyone.1:01:51And thank you, Coffler, for everything you did for Pete. Truly, from the bottom1:01:55of my heart, thank you. Thank you for what you did for the family.1:02:01Rodeo needs more donations. Ro, there's several rodeo cowboys diagnosed with1:02:07CTE. Several or if not a couple dozen. I'm not 100% sure because not all of1:02:15them are public, but I know one just recently was diagnosed. So, please get1:02:21out there, pay attention to this. Thank you so much, Casey. Thank your grandma1:02:26for being open. Casey, is there anything you want to ask offer before we go?1:02:33No, I think I think we're good. I think I think we're all good here. Um I'm just1:02:38very appreciative of all of you. This it's it's so much information. It's a1:02:42lot to take in. As you know, my family and I are still going through grieving.1:02:45Um my grandma and I were actually talking about that the uh yesterday,1:02:49last night about how the second year is really hard, you know, but it it eases a1:02:56little bit of the tension on that we have so much support, especially from1:03:01you all. Well, Dr. Coffler, Godspeed in your research and somebody uh1:03:07prayerfully you'll be able to come back to Casey and families like Casey's and1:03:13shed some more light on u you know possibly what happened to1:03:18their loved one. Um possibly what was a causation uh or or possibly could have1:03:24been involved. So uh um we'll and we'll definitely share the information about1:03:31the the testing and the the joining in uh studies very very important for1:03:37people as many as possible to join in these studies. So1:03:42I appreciate that and thanks for having me. I also would like to use this1:03:46opportunity to thank not just Casey and his uh grandma but all the families uh1:03:51of our brain donors who have done a very uh selfless act to donate and make the1:03:57decision at a very emotional time to take the extra step and make the1:04:01decision to donate their loved ones brain to us or other brain banks.1:04:05They're doing a tremendous service uh to the next generation of athletes because1:04:10they are the ones hopefully benefiting from the research that we're doing1:04:14today.1:04:15Great. Well, that's why I'm doing all the studies and research that I'm doing1:04:19on my brain is to help the next generation because I think us 50 and1:04:25older are the ones paying the biggest price to help out the younger1:04:29generation. Because back when you played, you guys smashmouth football1:04:35Monday through Friday,1:04:37played on Sunday, and showed back up on Tuesday.1:04:40Sure.1:04:41So, I mean, the game has changed. Game has evolved, but I think it's our age1:04:47group that has taken the toll and the older age group, but I think the1:04:52older age group that played in the 70s.1:04:56I Yeah. One thing I'm thinking of right now as1:05:01you are saying that is the NFL has cut way back the amount of contacts they1:05:11have in practice, the amount of repeated head impacts they experience in1:05:16practice. colleges. They've caught back mostly the Ivy League colleges because I1:05:22know the Ivy League I believe I believe the Ivy League doesn't even um play in1:05:27pads uh past their training camp. They don't practice in pads during the during1:05:33the the the season. But these young kids that are strapping helmets on at seven1:05:39years old when the milein sheath is not even started to uh uh develop in the1:05:45prefrontal cortex and these parents we need to raise the awareness that these1:05:50kids are not ready to strap helmets on at seven years old. That's what I truly1:05:57honestly believe. and let's let's help save our kids. And the even the pee-wee1:06:04leagues, they hit more.1:06:07They have no1:06:08they hit more than than NFL player teams. I'm I'm telling you.1:06:12Oh, yeah.1:06:12You you you see the pee-wee kids that they're hitting three or four times a1:06:16week.1:06:16Well, and it still shocks me that the NFL I mean, you were part of the1:06:20concussion lawsuit1:06:23and the only way you guys got out is by taking CTE out of the equation.1:06:27Pretty much. Yeah. the the CTE was expuned from the uh NFL concussion the1:06:33concussion settlement1:06:34and this new was four times1:06:37rate of ALS for NFL players.1:06:40Uh yeah, the the latest research out of Boston University, four times more cases1:06:46of ALS uh in in NFL players than the general population. Uh, and the players1:06:53that they have studied, I think it was five or six that they have studied that1:06:57had ALS passed from ALS, they also had CTE. So,1:07:03yeah, we we can talk about right now we can talk about possible correlations,1:07:09right? Possible. But, uh, there's there's a lot1:07:12for me there's absolute correlations. repeated head impacts can and will cause1:07:20mental health issues. Well,1:07:21you know, and the funny thing is is in my age,1:07:25you know, I knew as a kid if I bang my head against that concrete1:07:30wall 30 times, I'm going to do something stupid to my1:07:35brain. But I can go get on a calf. I can go get on a steer. I can go get on a1:07:40bull or a bucking horse and not think, you know, I'm banging my head 12 times1:07:45in 8 seconds. Huh? What's the difference? You know, I mean, so I'm a1:07:51firm believer and I'm I'm living with it. You're living I'm Hold it. Stop.1:07:57Rewind. I am not living with it. People think I'm living with it. We won't know1:08:04until I'm diagnosed. So, let me stop that. I and right now I'm not living1:08:09with CTE. I'm living with other issues. When I die and1:08:16an McKe holds my brain in her little hands and sets it on the table and1:08:21slices it up into 15 different places and looks and it goes,1:08:28I don't know the answer, so I ain't saying, but amid the one that gets to1:08:32chop up my brain like butter in the bread. Well, anyway, thank you both of1:08:37you so much for uh joining us today. Uh I think it was this this is going to1:08:43raise awareness. Um Dr. Coffler, you had so much information to share with us.1:08:48Thank you very much. And uh1:08:50thank you for having me.1:08:51Thank you. And I do appreciate it. Casey, give your grandma a big hug. Give1:08:57your mom a hug. Tell them how much we care about them. And uh maybe this time1:09:05Arizona and baseball might do something for you.1:09:10Hey, nothing but love for you all, man. I appreciate you all dearly and I will1:09:13give those hugs out indeed.1:09:15All right, thank you. Thank you all. So stay alert and stay alive.1:09:19This podcast is for general information only and does not constitute the1:09:23practice of medicine. The use of this information and the materials linked to1:09:27this podcast is at the user's own risk. The content of this podcast is not1:09:32intended to be a substitute for professional medical advice, diagnosis,1:09:36or treatment. Users should not disregard and delay in obtaining medical advice1:09:41from any medical condition they have, and they should seek the assistance of1:09:44their health care professionals for any such conditions.