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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.
0:10
This is the Head Rush podcast with Paul Freys and Corey Barry.
0:18
Welcome to the Head Rush podcast. I'm Corey Barry and I rode professional
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rodeo for nine years as a Bearback Bron rider. My co-host Paul Freys played 11
0:30
years in the NFL as a defensive lineman. You played all four position.
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>> I started at nose tackle. My first start uh was at nose tackle and then I played
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eagle tackle and by that time the Jets Jets were going to fourman front and
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played at right end and left end. Yes. All four positions on the defensive
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line. What's the biggest guy you went up
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against in the worst position that you played?
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>> Uh in in a game that Jackie Slater was my uh nemesis an entire 60 minutes of
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football.
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>> Um he took me to school. He sat me down and he taught me how to play the game of
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football. Yeah, he was and that was he he was with
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the Rams and that was in his 14th year.
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>> So I'm a secondyear guy. I think it was second year guy and I literally was
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watching film on him and I said, "You know what? He's older. He's I'm going to
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wear him out." And he wore me out. Yeah. He was he was he he was so nice,
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too. It was kind of like he'd kick my tail on a play and he he he'd say
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something like, "Oh, that that was a nice block or something or help me up or
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something like demoralizing." Anyway, and at the Head
1:56
Rush podcast, because of all them hits, we talk about everything related to
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brain trauma and brain health and wellness. We talk about traumatic brain
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injury, TBI, chronic traumatic encphylopathy, CTE, traumatic
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encphylopathy syndrome, TES, and repeated head impacts, RHI. We cover how
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traumatic brain injuries can and will cause mental health issues such as
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depression, addiction, lack of executive function, memory loss, even suicide
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ideiation, as well as degenerative neurological
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issues. These symptoms can be found on the Mayo Clinic and
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Boston University websites under symptoms of CTE. Our mantra is how to
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cope and find hope. We focus our energy on finding therapies and sharing hope
2:54
through education and raising awareness. Paul,
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>> our guest today, I think, is one of the most important guests that we've had on
3:04
in over a year of of uh wonderful guests. And we've had on on doctors,
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we've had on researchers, we've had on um uh players that uh are suffering from
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uh issues from repeated head impacts. But today we have uh a gentleman who is
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um he is uh set on um community and bringing support to uh a community that
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is that needs support daily. And uh so our guest this week is Tyler Ambrose.
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And Tyler is the peer support group uh coordinator for the Concussion and CTE
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Foundation. The Concussion and CTE Foundation was co-founded by Dr. Chris
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Nuinsky and Dr. Robert Kantu and um they work with a team of physicians and
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professionals based at Boston University. And this group conducts
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research in in the areas of CTE, TBI, and repeated head impacts. And in my
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opinion, this group is they're some of the mohest and most progressive minds in
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the field of research, uh, CTE research, and I'm talking worldwide research. As
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the peer support coordinator at the Concussion and CTE Foundation, Tyler's
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role focuses on providing resources, support, and connection opportunities
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for individuals and their caregivers navigating brain trauma. And I think one
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of the most important things, and Tyler is just a master at this, and uh Corey,
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I think you would agree that one of the most important things is connection
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um between uh patients, doctors, uh uh therapists,
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and and uh and connection is we were just talking about it. we were talking
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about. And sometimes it this topic comes up
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um in these support groups, these very important support groups, the the topic
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of suicide ideiation.
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>> Oh yeah. We all know I have them.
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>> So and and we're going to definitely talk about um how you get through some
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of those thoughts.
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>> Call you.
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>> Well, and yeah. and and and and you are able to talk with people on the support
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group. You you're able you actually you you call some people from the support
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group, don't you? Do you you've had a few phone numbers?
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>> Yep.
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>> So, Tyler, welcome. It's such a pleasure to have you and uh thank you for joining
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us.
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>> A pleasure being here, man. um just happy to be a part of the team and the
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community to really support and help people get what they need um to to keep
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pushing along, keep being those warriors and keep fighting.
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>> Well, Tyler, Paul and I get so much from our support group that you monitor
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and you know, my wife's on one of the
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support groups and you do a lot. Um, how are things going with the new foundation
6:24
branding name? Is it staying the same? Anything new in the helpline with
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support groups? And are you experiencing growth in people that need these groups?
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>> Uh, absolutely. We see year-over-year growth across our Zoom groups. Uh, we
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have an 86% retention rate across our groups as well. People keep wanting to
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come back and getting that support. So, we very thrilled to be able to offer
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such a a supportive community to people who are really seeking out some help.
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Um, as for the rebrand, um, you know, formerly Concussion Legacy Foundation,
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rebranded the Concussion and CTE Foundation to to show that we're working
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on both ends, not just concussions, but CTE as well. And, uh, everything has
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pretty much stayed the same for the helpline. We're still offering services,
7:10
um, providers in your areas, resources, recommendations, and as much support as
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we can possibly offer. But now we all got to buy new shirts and
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hats with the new logo.
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>> Forunate parts of rebrands, huh?
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>> I'm right there with you, buddy. I love I love my hats.
7:29
>> We're we're not we're not buying. We're donate. We're giving donations to to get
7:33
>> That's right.
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>> Yeah. Yeah. That that's that's that's so important.
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But
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>> but now all my CTE t-shirts finding a cure at Concussion Legacy Foundation is
7:45
>> there's a method to the madness of Dr. Chris Nuinsky.
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>> Oh, and I'm sure that PhD has a lot of method to his madness,
7:54
>> but and we can I I'm sorry, we're not bringing being disrespectful at all. I I
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I've known do Dr. Nuinsky for 25 almost 30 years. Um he actually used to help uh
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uh us with a foundation in my son's name and he helped us raise money for that
8:15
foundation years ago. So
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>> he sold the lawn mower, didn't he?
8:19
>> Yeah. Yes, he did. uh one we up in New Hampshire we had a a par three ninehole
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golf tournament and Chris came and he actually one of the uh local vendors uh
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donated a lawnmower to auction off and Chris actually got us a lot lot of money
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for a lawn mower that day. So but uh he's been oh well let's talk about this.
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I mean, who has been on the at the forefront of CTE uh awareness and and
8:52
pushing research? I mean, it was a hard I
8:58
Tyler I I think you How old are you, Tyler?
9:05
>> Uh I am 31.
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>> You're 31?
9:08
>> Yeah. So, how long has Chris Nuinsky been been at this for the CTE and
9:12
awareness?
9:14
>> Oh, wow. Um, what? Since back in 2008, starting the foundation, something like
9:20
that.
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>> Yeah.
9:21
>> Yeah. He's he's been at this for a long time. Been through a lot. He I I get to
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talk with Chris sometimes and he's got the biggest heart. He's a fighter. He's
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passionate. He wants to help people and he really fights for that aspect. So
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Chris has is gone through it and late nights, many emails, non-stop work. He
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is he's an incredible person and couldn't couldn't talk more highly about
9:44
him
9:44
>> and been booed off stage and everything. I mean called everything and
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>> early on obviously it was he was ostracized you know Dr. uh Ben Mal Malu
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uh experienced that in Pittsburgh and and in in general in the doctor's
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community.
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>> Karen, Karen and Doug Zagel, they you know,
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they've experienced,
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>> but uh yeah, Chris,
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>> I think they experienced it a little bit.
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>> Yeah. So, the the the fact of the matter is if there's not somebody passionate
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about the cause, it tends to die,
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>> right? And uh we're very fortunate of your the leaders the leadership of the
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Concussion and CTE Foundation. Um Tyler, can you go over the different
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groups uh the different support groups um that uh uh you have and say say a
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little bit about each group.
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>> All right. Yeah, we have seven groups now. Um different aspects, different
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areas. So starting off our PCS patients um postconussion syndrome patients group
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for those with concussions, TBI, PCS, persistent uh postconussion symptoms and
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open sharing format for across all of our groups. Um many of our groups have
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voluntary participation where you can sit back in the background, listen and
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participate when you're ready. A lot of people aren't ready to share their
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story, their symptoms, their struggles. And the PCS patients, uh it's one of our
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biggest groups. We have people that will drop in and out of the group, people
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that are feeling comfortable or just say, "Hey, I'm really needing this group
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today because my symptoms are really rough." And so, they'll jump in, they'll
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share some stuff, they'll ask some questions, they'll get their resources.
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We always end on a positive note. And there's always a ton of resource
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sharing, a ton of tips and tricks to get by um day-to-day or just navigating new
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life with a concussion or just getting through PCS.
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>> So, it's not it's not it's not just the athlete. It it's it's it's it's it stems
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out from I mean you you you don't just have a support group for athletes that
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have been in playing concussive sports. It goes you have a plethora of
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opportunities for people to get help.
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>> Oh absolutely. I mean we have people we have people that come from all different
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age groups. You know people that are you know teenagers that are listening people
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in college middle life um people who are older. Um it's it stems up and down. We
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have people that are athletes. We have people that have had car accidents,
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falls, um sports. We we come from all different walks of life. And the great
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thing that brings us all together is that we're there to support one another.
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And it really is a peer-to-peer group. You know, I'm happy to sit there and
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help facilitate it and offer some tips or tricks. I've I've heard from past
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meetings, but these these amazing people that are really fighting to to get their
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life back on track or get support are the ones that offer support to one
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another. And I couldn't be more thankful for them for creating such an amazing
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community.
12:49
>> If you've been told it's all in your head, but deep down you know something
12:53
is wrong, listen closely. Brain fog, depression, anxiety, irritability, even
12:59
PTSD. These are not just mental issues. They
13:04
may be signals of neuroinflammation and hormonal disruption, root causes that
13:10
traditional medicine often ignores. At the Millennium Health Centers, founded
13:15
by Dr. Mark Mark Gordon, they have helped veterans, athletes, and everyday
13:20
people restore brain function using a medical process called the Millennium
13:26
Protocol. Take their free brain health assessment at tbhelpnow.org
13:32
or and discover if inflammation, not weakness, is holding you back. You're
13:38
not broken. You're unbalanced and balance can be restored.
13:44
>> And so that's a PCS support group. What's the other six?
13:49
>> All right. Um I can go through those a little quicker now that you have a
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better backbones of what these uh groups offer in terms of both anonymity if you
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want to sit in the background, change your name, and uh participate when you
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want to. But next over we have the amazing CTE patients group and you know
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suspected CTE patients group. Uh amazing group of people. You guys know that
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group uh how supportive it is and and the hope that it really brings to a lot
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of people and a lot of our meetings. You talked about suicidal ideiation. We had
14:17
one of those really tough conversations about two weeks ago. Um, it's tough and
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some of those tough conversations are needed to be had so people can feel the
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right and the ability to express their emotions passionately within this group
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of people who truly understand what life is like in their shoes.
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what um so you you you say you talk about a peer-to-peer group and uh one of
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the amazing things I've never been involved with a group like this is you
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actually uh you we converse back and forth uh you'll you'll uh call on a
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certain person that had their hand up in the chat room and uh they'll they'll
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give uh they'll express what they're they're they're going through and you
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actually invite people that uh may have shared the same um the same uh tragedy,
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trauma, life experience and you uh you it's it's an open forum where you you
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allow peers to have that discussion and man I always love you know what you do
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as a can I do I call you a therapist or what you do in reaffirming
15:35
um uh you reaffirm somebody's share and then people actually feel very
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comfortable to chime in and and uh just talk talk through it. Um and and uh
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Tyler, we lost your picture. I don't know if you're still there, but
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>> still here.
15:55
>> Oh, wonderful. Good.
15:57
>> Yeah. Um do not call me a therapist because does not do justice to those out
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there truly doing the work of a therapist. I'm not a professional um you
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know counselor, psychologist and that's not what we offer for peer support. This
16:09
is an opportunity for peers to connect with other peers. I I mean how many how
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many doctor's appointments do you have therapy appointments, psychology
16:18
appointments, psych psychiatrist appointments? there's so much medical
16:22
that everyone has to do that this is a good opportunity to step away from that
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and talk with other people who were like yeah I you know keep checking the
16:30
microwave for my coffee uh but it's not there and those memory problems it's
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it's the small things that they get to talk about that really make a big impact
16:38
in the way they view themselves and we can normalize that more within this
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group that you're not the only one going through it there are other people out
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there and you're not alone in this
16:48
>> I I think it's oh man I think it's so important too for people listening to
16:52
this and wondering what a support group is and how yeah I don't I I I'm worried
16:59
about sharing my story or I I really don't want to get invol you know the
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bottom line is you you become and I don't know some of the names personally
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but I I know some nicknames and I'm not going to say them uh but you know one
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one is a from the Northeast and he's a Boston Red Red Sox fan and I grew up a
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Boston Red Sox fans. So I I mentioned, "Hey, do you like the Red Sox?" And and
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we almost like you almost like you have a camaraderie and this is men and women
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uh black, white, everything. you you have a camaraderie
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and you get connection and um I I believe that is so so important for
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a disease state like repeated head impacts like traumatic brain injuries
17:49
like possible CTE or traumatic encphylopathy syndrome. Um, and I that
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that's I love that about what you do and your team does.
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>> Couldn't be more thankful to be a part of that community and bring so many
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people together. And it's it's great that we can build the rapport in the
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groups, open it up for people to feel comfortable enough to talk not just
18:15
about their symptoms, but a little bit about themselves and those small
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connections we make with one another that bring a little bit more ease to the
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tension of what everyone's going through and touch on some of those more real and
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raw reality symptoms and circumstances that people are sitting in. So
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absolutely love to be part of the community. Like you said, it's it's a
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big community. We have people from all different walks of life similar the PCS
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patients and it brings us together. It brings us to become a family that we can
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lean on one another when we're really struggling such as you know when Cor
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reaches out and calls you on some of those tough days or reaches out to me
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and you know we're there to offer him some support and this group does that
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and so u PCS patients and CTE patients meet twice a month um easy registration
18:59
easy join button they get sent out to jump in we try to make this process as
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easy as possible and as always um try to keep a high level of confidentiality so
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please no vein sharing I think uh I think you don't meet
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enough. I think we need a a session every day.
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>> Well, I don't know about that, but yeah, we need
19:20
>> it would be nice and it being every two weeks is great. The one being at noon's
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a little bit off then the one at night, but it's pretty much all of us are the
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same ones on both of them anyways on our support group. Um, and I think it's the
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same with the one my wife's on. My wife's on what's that one called? Well,
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she's on two of them. Caregivers and then another one, ambiguous loss.
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>> Yes. So, two more groups that we have. The suspected CTE caregivers and the
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impacts of brain trauma on families. Two separate groups. I facilitate the CTE
20:00
caregivers group and then Tammy Mloud. Um, she facilitates the impacts of brain
20:05
trauma on families. She uh she also had an incident with her son when she was
20:10
younger and lifealtering um requires 24/7 care and so she helps the group
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speak on ambiguous loss which is the grief of not losing someone to death but
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to severe psychological behavioral cognitive changes. And it's something
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that's very difficult to a lot of families to try to figure out and how to
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deal with. And so she does an amazing job at supporting anyone who jumps into
20:37
this group and asks questions and shares their story. Um, and then this suspected
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CT caregivers group is is equally amazing. Uh, it's it's been building
20:46
recently. Um, getting up to numbers that are almost within range of the patients
20:51
groups. And so so many people are spreading the word, getting awareness
20:54
out there that you're not alone, that it's it's difficult to care for a loved
20:58
one um with suspected C symptoms. And so this is a place where you can come have
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some camaraderie with other other people that truly understand what life is like
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as a caregiver.
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>> So when when you talk about these these groups and and the um sus suspected c
21:15
CTE or um you you come across all facets of caregiving. You it's not just
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physical. It's it's it's emotional. It's uh and sometimes it's ex extreme
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emotional mood swings. Um and and sometimes it can be extreme physical. Uh
21:36
what what do caregivers what do you hear that caregivers uh deal with with um
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suspected TB TBI or TBI or suspected CTE um brain drama?
21:53
Oh, it's a tough question because we had a lot of broad categories on that one.
21:57
Um, you know, off the top of my head, I
22:00
would say uncertainty. There's so much uncertainty when it comes to, you know,
22:05
the volatility of emotions and memory and figuring out what's going to work
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and what's not going to work cuz different things will work for different
22:13
people, different therapies, different medications,
22:17
different activities. And the uncertainty is something that it it
22:21
would make anyone feel almost crazy. And a lot of the times the people that come
22:25
into our group, they'll share and they'll be like, "Am I crazy? Is is am I
22:30
alone in this?" And everyone will speak up like, "You're not crazy. I'm going
22:33
through this. I understand. It's it's difficult." And the uncertainty of
22:38
knowing what's going to come the next day or the next month or the next year.
22:41
It's it's a lot on on these caregivers. Um but they're they're warriors just
22:46
like the patients. They're there fighting the fight, sticking alongside
22:49
their loved ones, trying to figure out what works and what doesn't be coming
22:53
together. And I know that that sometimes it shifts. It shifts in the uh the way
22:59
that the feelings have to be expressed in certain circumstances. And so we'll
23:03
we'll laugh together. We'll cry together. Um we'll have some people to
23:07
express all their anger out because it's the only place that they have an outlet
23:10
to do so. Uh because not a lot of family or loved ones can truly understand. And
23:14
so this is providing a great place for them to feel understood, heard, and
23:19
accepted.
23:22
>> I think um so you're you're looking at two guys. One that's tees, traumatic
23:30
encphylopathy syndrome, probable CTE, and he's
23:35
>> take take a guess which one. and and Corey has gone through that
23:43
rigorous uh medical
23:47
evaluation and observation and he's driven hundreds of miles to see some of
23:52
the best uh neurologists in in the world and uh you know actually um uh Dr.
23:59
Tanner was suggested he works with uh does he work with Michael Oasco up at
24:04
Boston University or?
24:06
>> Yeah, I mean BEu actually referred me to Dr. Tanner. Dr. Tanner actually was a
24:12
speaker at the global summit in San Francisco this last Monday.
24:18
>> Yeah. Let me ask you Corey. Um you're a patient. Susan's a caregiver.
24:28
I what are a couple of the things and I and I don't want you to um
24:34
I want you to tread lightly and and just have a a pragmatic approach.
24:39
>> What's pragmatic mean?
24:41
>> Meaning take the the emotions out of it a little bit and just kind of f facts
24:45
are facts and uh because I know that this is an emotional situation for you.
24:51
your wife. You have told us numerous times that you would not be here if it
24:58
wasn't for your
25:00
>> 100%.
25:00
>> Your wife, your caregiver,
25:02
>> thousand%.
25:03
>> Do you do you know I mean obviously what what types of things uh as a caregiver
25:11
does Susan have to expect or experience? And if you don't want to talk about it,
25:16
that's but I just I know I know you're an open book. You know, when I'm in my
25:21
dark mood, she has to deal with that. It's like yesterday, I had a real bad
25:26
day. You know, I went to clean the P traps and I took the
25:33
P trap off. Brain injury 101. What do I do? I take
25:39
the P trap and I run it through the sink to clean out the P trap. Then I set the
25:46
P trap down. I wash my hands. Grab a towel, dry, turn off the water,
25:52
and then I look down and realize, [ __ ] there's water coming out on the floor
26:00
because I didn't put the P trap back. And then I made myself breakfast
26:08
yesterday and I had to go to the bathroom. So, I
26:12
went to the bathroom, washed my hands, came back out and
26:16
watched TV. And then I was thinking and I looked over at the kitchen and there's
26:21
my breakfast. So,
26:26
right now, we can
26:30
we can chuckle a little bit about the P trap thing
26:34
or the breakfast thing, but you
26:36
>> But you were you were very you were very distraught.
26:40
>> I was pissed. Yeah,
26:41
>> I actually teared up probably half the day yesterday going, Jesus, why why
26:47
can't I be normal? Why? Five years ago, I would not even have
26:55
thought about running the water without a P trap underneath.
27:00
I mean, it's just idiotic. And that's what
27:04
>> that's Don't Don't beat yourself up. I mean,
27:07
>> honestly, it's idiotic.
27:09
>> Let me ask you a question. Susan, how does she respond as a
27:14
caregiver? She she does she come in and say,
27:18
"You're an idiot." Or does she come and say, "Hey,"
27:22
>> Oh, depend on her mood. We all know my wife, Tyler,
27:28
>> she's a strong Well, she's got to be a strong person to be a caregiver.
27:31
>> But I mean, it's kind of like me leaving the almond milk in the pantry
27:36
>> instead of
27:38
>> the refrigerator. Well, I say they they have almond milk on the storefronts in
27:42
on the shelves. They don't they don't
27:43
>> Right. But it
27:44
>> Oh, it was open.
27:45
>> It was open.
27:46
>> Okay.
27:47
>> And my wife looked at me and said, "Who cares if it spoils?"
27:52
>> Yeah.
27:52
>> Who cares? And but there's other times if she's in a bad
27:58
mood or got a headache or just tired of me, she'll
28:02
>> Well, it's 247, isn't it?
28:04
>> It is. I mean, my wife's got Well, look at last night and how my wife was this
28:11
morning.
28:12
>> Mhm.
28:13
>> You know, she gets a she has to get a little frustrated. I mean, she did not
28:18
buy into having a 56 year old baby.
28:22
>> Wow. She's she's obviously caregivers are
28:27
their strength is underrated, unappreciated. uh was because I had a
28:34
son with a muscle disorder for so for 40 days shy of his 16th birthday. We were
28:40
in and out of the hospital and I always used to think those nurses are some of
28:45
the most underappreciated, underpaid uh you know people on the face of the
28:50
the earth. But it's kind your your wife is a nurse. She's a caregiver.
28:56
>> Yeah. I mean at what point
29:04
how do I say I love my wife with everything in my life my soul my body if
29:10
anything was that I don't even want to go there but
29:17
at what point am I her patient and at what point am I her husband
29:28
I think it's probably one and the same.
29:30
>> It is
29:31
>> for for a spouse spousal caregiver.
29:34
>> So you look at nurses,
29:36
>> right?
29:37
>> They do eight hours a day. They go home,
29:39
>> right?
29:42
>> My wife works on the property we live.
29:45
>> Mhm.
29:47
>> And she deals with me 24/7.
29:52
>> Right. She don't get a break. The break she
29:57
gets is going on a support group with Tyler Ambrose.
30:02
And I don't listen to him, but I'm sure there's times she goes, "He's a flipping
30:07
idiot. Jesus Christ, what a whiny baby. I mean, God, I get so tired of it." But
30:15
you know what? That's a good example of why the support groups are there because
30:21
she can go after me like that
30:24
>> or she can get on the support group and go, "Hey, Tyler, guess what? Corey's an
30:28
idiot today." You know, it's what what people uh need to understand is
30:36
that that that hour a month or two hours a month is is respit for for Susan. It's
30:44
a chance for her to step away from it.
30:46
>> Um, we we were talking about the last time that we filmed uh um last month, um
30:53
we were actually talking about uh you know, you and I me coming to Texas for
30:59
five or six days and letting the girls go on a on a cruise,
31:03
>> right?
31:05
>> I don't I don't know if I would be a good caregiver,
31:08
but the problem is we
31:10
>> don't forget the milk in the pantry.
31:12
>> Yeah. You and I would be we would be a mess. The two of us together would be a
31:16
mess. Maybe that. Anyway,
31:19
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your brain.
32:13
>> So, back to the support groups. I mean, what is your takeaway on
32:18
how people benefit and from what I just said and everything
32:24
like that? What is your you're not a therapist, but you're one
32:29
you're probably one of the top moderators out there that can keep all
32:34
of us in check. I mean, when I go on my rants and some guy talks about suicide
32:40
on support group and I'm like, "Dude, it took you 30 years to get here. Give
32:46
yourself 30 years before you do it." Um,
32:51
and keep us all in check and dialed in. What is your
32:58
what do you see as the benefit and the need for these groups
33:03
and your takeaway on it?
33:08
>> Oh man. All right. A couple of things to touch on. Uh one, when your wife enters
33:13
those groups, she is a shining star of support and resources to so many people
33:20
within that group. And you know, not always positive moments, but there's
33:24
always hope in her share. There's always hope that you can figure something out.
33:28
So, you know, she doesn't come to these groups and say, "Hey, Corey is an idiot.
33:33
She loves you and she knows that you love her and and we've had those
33:36
conversations of even if it's tough as a caregiver."
33:40
It's really hard to imagine life without your loved one, without your partner,
33:44
and even if you're going through those those difficulties, it's something that
33:47
they stick by and and they're fighting for. So, if it if it helps give you any
33:51
comfort, man, um that woman loves you with with all her heart the same amount
33:55
that you love her. So, I'll leave that there. Um and our support groups, man, h
34:01
it they're they're just great in the sense that they really get to offer
34:06
support and you say it's respit. Um a lot of times it's it's a a dumping of
34:11
emotion and trauma and difficulties of what they've been through. And that
34:16
goes across all of our groups. Um, two other groups. We have a concussed mom's
34:20
group and that's for moms who have had a concussion and are still, you know,
34:24
trying to figure out how to be a mom while dealing with a concussion and
34:28
being a wife or um a caregiver and still trying to figure that out as well. And
34:32
Allison Moore Smith is amazing. She facilitates that group. Um, we even have
34:36
a group in Alaska um for Alaskans by Dr. Adam Grove and he does an amazing
34:43
job at offering support to Alaskans who are struggling in their own unique
34:46
circumstances. But across all of our groups, we we really just want to offer
34:51
people the opportunity to not feel isolated, not feel alone in what they're
34:55
going through and to provide them hope that there are ways they can mitigate
35:01
their circumstances or their symptoms or um for our concussion groups, find find
35:05
a path to being, you know, recovery of of where they want to be. Um, you know,
35:10
sometimes people find new normals, but other times people find a way to get
35:14
past their symptoms or deal with their symptoms dayto-day where they can live
35:17
the life that they were looking for. And it also goes for people with suspected
35:20
CT. You know, we've had people in the group that, you know, when they first
35:23
came to the group, man, they were a wreck and they just had sob story after
35:29
sobb story of what they were going through. And it is it's hard. It's it's
35:33
a really hard thing to sit in there and listen and not to be able to reach
35:38
through and give these people a hug because I wish I could. I'm I'm I'm a
35:41
hugger and I want to be able to offer people that kind of support. but to
35:45
listen to them and then you know 4 months later they're coming back hey I
35:50
tried this new therapy and I'm feeling better on this or I tried this and I'm
35:53
looking forward to the results and hearing the hope in their voice and it
35:56
was from the group that they found you know like a neurooptometrist to fix some
36:00
things at their vision or um you know a cognitive behavioral therapist and
36:04
they're starting to turn some things around that they can actually control.
36:07
So the groups offer the lived experience and wisdom of people who have been
36:13
through it, who are going through it. And you know, we're always looking for
36:16
more people to join who have a little bit more experience in the areas and can
36:20
offer the support to people. So we have our volunteers and sometimes they'll
36:24
jump in and they'll answer questions as best as they can. But again, you know,
36:28
it's not professional. It is peerto-peer, but it's still really good
36:31
advice, love, compassion, empathy, everything that we want to embody in in
36:37
these support groups is is truly what the peer-to-peer connection is about.
36:42
And absolutely thrilled to be a part of it.
36:45
>> Well, in the last two support group meetings, I was off. The last one I
36:49
didn't even have the camera on because I was laying in bed and muted and
36:54
everything and was just like I'm just going to listen cuz you know we had that
36:58
bad storm and I've fallen twice in the last two months and gave myself
37:03
concussions and yeah I've had two concussions in the
37:08
last month on top of all the other ones I've had
37:12
you know um slipping on ice and my knee going out But,
37:19
you know, when I'm on the support group and I'm not in a bad way,
37:26
I like to think that what I have to say means to people, just like when you talk
37:32
and when other people talk to us, it resonates to let us know we're not
37:38
alone, right?
37:40
>> That this is not a disor
37:45
mean moment. This is this happens to a lot of people,
37:49
>> right? And I think I I see that constantly. Yeah. I mean, I've I've I've
37:54
heard some people I mean, I've heard people respond to your shares saying,
37:58
"Hey, Corey, that helped me." or and uh it it is important to talk uh speak up
38:05
and uh you know because sometimes if we have to give this a voice you know I
38:12
think that the I think the support groups give us the opportunity to uh
38:16
give TBI and CTE a voice and uh and u this this dialogue if it doesn't happen
38:27
it it's so much darker the the the the disease and the caregivers's lives could
38:34
would be will be are so much darker without this hope. Um this is this is
38:40
why we do what we do. We don't make any money
38:45
with the Head Rush podcast. We don't do this for our health. We we do this to
38:50
share hope and man
38:52
>> help and help. And if you, you know, if you have, you know, if if you're dealing
38:58
with um anything health, you know, brain health and wellness related and you need
39:05
to talk to somebody, these help groups are these support groups are just
39:10
crucial.
39:11
>> And where's the best place to go?
39:14
>> Well, you can we can you can go to the Head Rush podcast and we could we could
39:19
direct you, but we're not the best place to go. The best place to go is to uh the
39:25
concussion and CTE foundation
39:28
>> forwardhelpline, right?
39:31
>> Mhm. Oh yeah. Our helpline coordinators, managers, they are incredible. I cannot
39:37
speak highly about them enough. Trisha, Courtney, Madigan, they they help so
39:43
many people and they do it with a passion that exemplifies exactly the
39:48
mission of our company and what we want to do and support people. And every time
39:52
I've ever spoken to anyone after, you know, a peer support intake call, people
39:56
looking for peer support, they come from the helpline and they're like, "Oh, you
39:58
know, Madigan was so sweet. She helped me with so many things and Courtney
40:01
really delved into find me the resources I need to." And Trisha was just so kind
40:05
in what she spoke to. She really understood what what emotions I was
40:09
having. It's they are they are doing frontline work to really provide the
40:14
help and resources and support that so many don't know is out there. And it's
40:19
it's just it's amazing to work with them. Um it I absolutely love it.
40:26
>> We're going to get into uh when you have to
40:30
put put down the you know put you on your fist and be hard on people. Not
40:36
Tyler's never hard on people. I was gonna say I don't think I've ever Tyler
40:40
gave me a hard stop I think once
40:44
>> after 17 minutes or no just
40:46
>> it was I was getting a little too harsh and
40:50
>> oh
40:50
>> he personally text me on my cell phone and went um maybe back off of this a
40:56
little bit he might what
40:59
>> it's a it's a fine balance of tough love with support and sometimes there are
41:04
some people who you know you tell you know pull yourself up by your bootstraps
41:07
and and get on it. And and that's that's one of the main important aspects of
41:12
peer support is coming from so many different backgrounds, so much
41:17
understanding, so many perspectives is that sometimes we have people in the
41:21
group that need a little bit of tough love that they need to hear, hey, you're
41:24
going to be okay. Like it's you're going through a really tough time. Um don't
41:28
think about suicidal ideiations. Don't plan the date. have the hope and give
41:33
yourself a couple of days to relax, destress, and come at this again. You
41:37
can Cory's tell people you can call me. If you think you're going to do it, call
41:41
me and we'll talk we'll talk about it. Just don't do it. And sometimes Cory's
41:46
passionate about it. He he does not want anyone to take their life. And he's he
41:49
makes that very very clear in all of his shares. And I couldn't agree more. I I
41:54
definitely don't want to. And there's the balance that we have to have of that
41:58
tough love and also hey, you know, not everything is rainbows and sunshine.
42:02
Sometimes we have to live in the suck. Sometimes things suck. Sometimes it's
42:06
just a down day. And toxic positivity can play a role in some of that of
42:11
always hearing you're going to be fine. You're you're going to get through it.
42:14
Just keep going. And sometimes you just need to say, look, I'm sorry you're
42:16
having a tough day. We're here for you. Unload. Let me hear it. We're here for
42:20
you. And we do a really good job of that in the group. and and Corey definitely
42:24
provides a lot of his tough love and a lot of times it's necessary. Uh don't me
42:28
wrong sometimes I'm like well let's let's let's circle back. Um but that's
42:33
the whole purpose of it peerto-peer led and peerto-peer supported.
42:37
>> You you have the gift of you can even affirm in saying let's circle back and
42:43
you know go go back and look at it. You still affirm uh and it's it's pretty
42:47
powerful. Um, so and man, I've I've heard uh you've uh you allow um some
42:54
writings to be uh expressed. We had one gentleman that just wrote an
43:00
unbelievable poem poem that you've uh had many times. Uh you've had him read
43:05
it many times.
43:06
>> Boston.
43:07
>> Yeah. And it's just it's powerful. But um um let's go over some of the actual
43:14
rules that you have to keep in order to uh keep everybody feeling safe and
43:20
heard. Uh whether it's administrative stuff, is there HIPPA involved? This is
43:26
not a medical support group per se. Um but what do you have to be aware of?
43:34
>> Uh a big one is confidentiality and we really try to push that for a lot of
43:38
groups. you know, we don't have any recording within the group. We don't
43:40
have any contact sharing of information. You know, we push people towards our CTE
43:44
resource Facebook group where you can meet other members, stuff like that. But
43:47
we really try to make sure that the confidentiality is there for people to
43:51
feel safe enough to share what they're going through because we have people
43:53
that are public facing. We have people that, you know, still dealing with some
43:56
stuff with their families and they don't want to have too much of their
44:00
information out there or their story. And so we have people that will have
44:03
pseudo names and um people that want to remain anonymous. So confidentiality is
44:08
a big one. We we don't share emails, information, anything with third
44:12
parties. Everything's kept in house and only retained for in in case we need to
44:16
reach out for additional support. And um you know on top of that we have a couple
44:21
of inroup rules such as you know three minute timers for people to be aware of
44:26
how long they're sharing for trying to keep to the strict standard of no people
44:29
raising their hands to share because Zoom when everyone starts talking over
44:32
one another it's chaos. Um, so we have have pieces in place for people to kind
44:37
of be like, "Oh, like I want to share." And then I can throw it over to them and
44:40
and push who's next and even get some responses in there. But, um, overall,
44:45
you know, not telling anyone what to do, saying what works best for you and how
44:51
that's impacted you is is a great way to go about things. As well as not sharing
44:55
any dosages, medications, uh, cuz that's left up to professionals and I am not
45:00
one to do so. None of us in the group are ones to do so. Um but you know we
45:04
try to offer as many alternate perspectives, therapies, tips, tricks,
45:09
medicines, anything that someone could go and do
45:12
some research on their own. And that's what I always tell people. Do your own
45:15
research. Look into it yourself. You know, this is not professional advice.
45:18
These are these are people that have tried things, experienced things, and
45:21
now, you know, look into it to see if it's a good fit for you.
45:24
>> Stop. CTE.org proudly sponsors the Head Rush podcast.
45:30
Karen and Doug Zagel. They are uh founders. Karen founded the Patrick
45:37
Greca CTE Awareness Foundation and they are one of the most comprehensive
45:44
websites regarding repeated head impacts and
45:50
chronic traumatic consephylopathy. They have they work with legislature. They
45:54
are they've been doing this for about 10 years. They're the grandparents of CTE
46:00
in my book. So, don't knock it. Stopct.org.
46:06
>> Well, yeah, that that's interesting, too. Um, you do allow people to say,
46:10
"Oh, I tried TMS and it was good for me or didn't do anything for me or I've
46:15
tried I'm work working with red light therapy or whatever modality it is."
46:21
>> They'll even share the link.
46:23
>> Right. Exactly. So you share you share the link and you you say research it
46:28
yourself. Um so you you you talked about a threeminut um uh timer. You know
46:35
you're over that. Who who who do you think who might be and and he may he may
46:41
or may not be on this screen right now. But who is the biggest um in infraction?
46:46
Uh
46:47
>> Paul Price the biggest culprit of speaking over
46:52
three minutes. Paul Frase,
46:57
>> what I will say about three minutes, man, is it's not enough time. It it
47:01
really isn't to share someone's story, their woes, their difficulties. People
47:05
are going to go over and we know that and you know, we're going to give each
47:08
other uh you know, a little bit of crap for it here and there because it's it's
47:12
going to happen. And that's why I always tell this is awareness of other people
47:15
that want to share and respond, but people are going to go over it and it it
47:19
does happen. We try to keep it to the time constraints cuz you know we only
47:22
have 60 minutes for this meeting and you know I always wish we could have more
47:26
but we had to keep things within that time frame to make sure that everyone
47:29
can keep that structure because structure is important to a lot of
47:31
people especially when they're dealing with symptoms and trying to figure
47:33
things out. So um I don't fault any Paul or Corey uh for going over there the
47:39
time. Well, I would I would say uh when um a person dealing with uh this this
47:48
trauma has something to say, it's I I have I have I have heard very
47:57
um every sheriff that I have heard has been relative. It's been I' I've had
48:02
some residents. I have had some um it's just it's just good u information and
48:09
good content and it's it's it's a support group. It's it's it gives you
48:15
hope. Um
48:17
>> it don't always give you hope but it gives you hope for another day,
48:21
>> right?
48:22
>> I mean we can get pretty bleak and when it comes to infractions I've
48:28
broken the email a few times. People ask me for contact and I give them and is
48:35
>> that's one thing that the rules say please do not share your contact
48:40
information but I private message them.
48:43
>> Um don't tell
48:44
>> sorry I I couldn't I couldn't hear you cut out for a moment.
48:47
>> Exactly. Hey I want to ask you 86% retention
48:51
rate. Really? I mean nothing has an 86 uh percent retention rate. Are you guys
49:00
the first to talk to us about that and why? Why do you think it is?
49:06
>> Uh, I couldn't begin to break down the numbers for you and tell
49:12
you if we're the first or even going to be the last. It's It's about the
49:16
community. It's about the people who have found a space where they feel they
49:19
truly belong in and they found people who understand and empathize
49:26
and know the difficulties of what they're going through. And you know, I'm
49:31
I can't say it's just me. We have other facilitators. We, you know, we have Sam
49:36
from the adult children of parents with suspected CTE. She's a staff member for
49:40
concussion CTE Foundation. You know, Alison Moore Smith of the Concussed
49:43
Moms, Dr. Drum Grove Alaska group, Tammy Mloud of the impacts of brain trauma on
49:48
families. We we have so many great people facilitating these groups. It's
49:53
not just me. And what we do have is community. We something that we try our
50:01
best to provide is that safe space to be unload on us. Let us know what you're
50:06
dealing with. We're going to do our best to support you. And if that's what 86%
50:11
retention rate means, that's what it means. That's that's all we want to
50:13
provide. And I think it's just the fact that these people actually feel like
50:17
they have a voice and they they have been heard.
50:21
>> This episode of the Head Rust podcast is brought to you by our personal doctor
50:26
and team of doctors uh Dr. Myisel Deo and she's with the Paradise Behavioral
50:33
Health and we are in the Brainwell program which is also part of the
50:38
Millennium Health Center. Uh Dr. Mark Gordon. You've seen him on Joe Rogan and
50:46
even on our show, the Head Rush podcast. Um,
50:51
and the hormones. And Michelle is awesome. We love her. She's she's our
50:58
doctor of psychiatry. She works with the Mark Gordon program with the hormones.
51:02
and uh and she she adds her twist of genetics and um and it's it's it
51:10
basically is melding two wonderful uh uh mediums together and we're getting great
51:16
help from Dr. Meiselle Deo.
51:19
>> So, please check out her website at paradise behavioral.com.
51:24
>> Look up the brainwell program. Get involved.
51:29
>> She's sponsoring us. They're sponsoring us for the next year. So, we are excited
51:32
to have them on board and uh and and shout the new the good news to everybody
51:38
uh that is watching these broadcasts. So,
51:42
>> is she helping you, Paul?
51:43
>> Absolutely.
51:44
>> She's helping me. So, go check her out. Paradise Behavioral Health.com.
51:52
>> Well, if you look at the community, you look at what happened yesterday.
51:59
Chris Ninsky is busier in hell at Super Bowl on Media Row
52:04
and he is the top dog at Concussion and CTE Foundation.
52:11
And I was talking to Casey Kennedy and we were talking that
52:18
his dad results haven't been brought back in a year.
52:23
And I'm not going to mention universities or nothing because I don't
52:27
think we're there yet. If they don't do something quick, believe me, I'm going
52:30
to go live on it.
52:31
>> It's not Boston University, though.
52:33
>> It's not Boston University, and it has nothing to do with Concussion and CTE
52:38
Foundation. But I emailed Chris and I go, "Hey, Chris, what can you do?" And
52:44
he goes, "Send Casey my number. Have him text me and I'll call him in 15
52:49
minutes." Nothing to do. It's a brain donation to
52:54
another university. nothing to do with concussion and CTE or
53:00
Boston. He calls Casey. Then he calls the
53:04
university and pretty much tells them you need to do better
53:10
>> and then called Casey back or text Casey back and say, "If you don't hear nothing
53:14
by Monday, let me know." Well, that that just it it proves that
53:21
this is a situation that is dire. It is it it
53:28
it's it's it's life or death. It's it means
53:31
>> Oh, it's death. It's it means lives or uh and finding a a finding a diagnosis
53:38
tool, finding out how they can find out in the living if they have if one has
53:45
CTE and then going to work on potential therapies. That's what um um Chris uh
53:54
you know I that's what the the Concussion and CTE Foundation is about.
53:58
Uh that's why uh I believe uh Chris and and Dr. uh Robert Kantu founded um this
54:08
this help source and because it is it is a um I think it's more prevalent than we
54:14
think throughout society. Uh it that it it's something that needs to be uh
54:20
discovered. The discovery is taking too long, but we're we're getting there. And
54:25
I know um you know I believe I've believed since the inception that Chris
54:33
um you know Dr. Ninsky uh you know has been pushing this uphill and hopefully
54:40
we're cresting he's cresting we're cresting the hill and we're starting to
54:44
go down the back side of the hill. So
54:47
>> and I can guarantee he's still catching flack.
54:50
>> Mhm. Oh,
54:51
>> well Chris Boyce is giving flack for saying age 14, but
54:57
it's
54:59
>> he's such a strong advocate.
55:04
>> He's not going to back down.
55:06
>> No, he's a strong advocate for us. Well, he went he was Chris Hob.
55:11
>> Chris Harvard. He was a defensive He was a defensive lineman for Harvard first
55:16
and foremost, right? Just like you were a bron a bucking bron rider. Is that
55:22
correct? That's that's the way to say it.
55:25
>> I was a bron rider. You don't have to say ducking bron.
55:29
>> But it's
55:30
>> Can you tell I know nothing about uh rodeo? I'm learning
55:34
>> Tyler. I'm learning.
55:36
>> But you know when it comes to concussion and CTE Foundation and the helpline,
55:41
they've helped me. And I will admit that it took Boston University to get me to
55:48
Tanner and then things started helping from
55:52
there. Um
55:56
because it just I'm a different story than
56:04
what they're probably used to. I'm a little bit further along in that
56:09
uh diagnosis, should you say?
56:11
>> Yeah. and you're and you're very pro uh pro proactive about the diagnosis and
56:16
you understand what the diagnosis will do to further research and that's and
56:22
it's important to you
56:23
>> well look at it in the global summit that they just did what they say
56:29
trials for CTE not ready because we need biomarkers we need tees
56:37
we should start that now guess what ladies and gentlemen,
56:44
>> you you have the diagnosis. And
56:46
>> I'm first in line for that research. NFL doesn't matter no more.
56:52
>> I'm first in line for that research.
56:54
>> Yeah.
56:55
>> Where are you?
56:56
>> Uh I I am I'm stuck setting appointments with somebody like Dr. Tanner so I can
57:02
uh see where I'm at. So see where you know what I'm you know.
57:07
So, all right,
57:08
>> we like to end on a word of hope.
57:12
>> Yes. Tyler, can you give us uh can you close
57:17
us out with a word of hope uh for our listening audience?
57:24
>> If anything that I can get across is that you're not alone. There's going to
57:28
be plenty of times where you feel isolated. Nobody's going to understand.
57:32
Sometimes you're going to feel stuck and you don't think things are going to get
57:36
better or you're going to recover or you're going to be back to a spot where
57:40
you'd like to be at. And just know that you're not alone in feeling that way.
57:43
There are people out there who feel that exact way. They're still
57:48
fighting and they're fighting not just for themselves, but they're fighting for
57:51
you as well. And reach out cuz there's a lot of people out there that want to
57:56
help you. There's a lot of people out there that want to support you. And
58:00
sometimes it's a fight to figure out who that is and where they are. But here at
58:03
Concussion CT found Foundation, you can find that help. You can find that
58:07
support. We're going to be there for you. We're going to do our best to
58:10
support you with empathy, with compassion, with passion.
58:15
And just always know that you're not alone.
58:20
>> That's what we needed.
58:22
>> That's awesome. And once again, ladies and gentlemen, if you need help, if
58:27
you're suffering from a concussion or repeated head impacts or you're having
58:33
issues with your brain because of it, go to concussion and CTE Foundation
58:41
SLhell. They even got I just found this out at
58:46
the Global Summit. They got a 247 Dr. Robert Cantto now. Oh, really?
58:54
>> You go on the helpline. Yeah, Robert, too. It's AI
58:58
>> and there's a.com somewhere in the in there.
59:01
>> And there got to be.
59:03
>> Thank you, Tyler. Unbelievable uh episode. Uh great great information and
59:10
uh we really appreciate all you do um for for our peers and all you do for uh
59:18
um concuss the concussion and CTE Foundation. And I keep
59:22
>> all he does for us.
59:23
>> Yeah. Yeah.
59:24
>> I mean, he texts me after a meeting and go, "You doing all right?" No.
59:29
>> You know, and he asked me yesterday, "How you doing?" I'm could be better.
59:36
Well, there's there's a reach out to uh uh reach out to them and uh if you're if
59:43
you're have issues and um stay alert, stay alive, uh push like, push the
59:50
button, like this, subscribe, whatever.
59:53
>> Share, follow,
59:55
>> share, follow, comment. You know,
59:56
>> do a review.
59:57
>> Yeah.
59:59
>> Is that what they call it, Tyler? Doing a review.
1:00:02
>> Something like that, man. Uh, you're I I think I might be about as up to date on
1:00:06
social media as you guys.
1:00:10
>> I'm just I just like to be in the thick of it, man. Talking with the people.
1:00:13
That's That's what I like. So, happy to be here and uh happy to support all
1:00:16
those in need of help and book a call and we'll chat and do my best to support
1:00:20
you.
1:00:21
>> Thank you so much.
1:00:22
>> Thank you, Tyler.
1:00:23
>> All right, this this does it for another episode of the Head Rush podcast. Thank
1:00:28
you, Corey.
1:00:29
>> Taylor,
1:00:30
>> and stay alive and
1:00:31
>> we'll talk to you later. This podcast is for general information
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