Interview with RJ: his experience with light therapy for symptoms of repetitive head impacts and potential CTE

In an interview, RJ discusses his potential CTE and his positive experience as a participant in a photobiomodulation study conducted by The University of Utah TBI and Concussion Center, Department of Neurology School of Medicine. The study authors are finalizing the data for their study, Use of PBM to Improve Brain Health and Resiliency in Individuals with Repetitive Head Hits: A Pilot Study.

RJ spoke with Concussion Alliance Co-founders and Co-executive Directors Malayka Gormally and Conor Gormally on January 18th, 2022.

Scroll down for the transcript of the conversation (with minor edits for clarity), plus a video recording of the 30-minute discussion.

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If you wish to try this therapy modality for symptoms, there are a couple of options:

• The Boston VA Research Institute, Inc. and the VA Boston Healthcare System:
  Our blog post explains how to apply to participate in the current VA photobiomodulation study.

• The University of Utah School of Medicine, Department of Neurology, TBI and Concussion Center:
  Our blog post explains how to stay informed of future calls for light therapy study participants – and you can watch a terrific video about the study that RJ participated in.

• Purchase a device directly from Vielight
  You can purchase the device used in this study, the Vielight Neuro Gamma.

  Please read our page on photobiomodulation and related information on our blog to learn more about light therapy.

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Conor Gormally:

It's great to meet you. Could you expand on your career regarding football and your journey to finding PBM as a potential therapy?

RJ:

Okay. So my name's RJ. I'm 49 years old. I originally started playing football in high school. I had four years at Serra high school down in San Mateo, California; the school's known for Tom Brady, that was his homeschool as well. He came in a couple of years after me, but still fun to say. While at Serra, I played inside linebacker and started for four years. While I was there, I had three pretty serious concussions and a pretty serious neck stinger, which they were able to correct the neck stinger with a cowboy collar, which is a special device that holds your head and limited range of motion. However, that may have also affected future concussions as well because I did have that limited range.

RJ:

But so I had the three concussions there. One was pretty serious. The medical staff kept my helmet because I was trying to put myself back in the game. But I played at Serra and had a good time and did well. I got picked up by Oregon State and played there from 1990 to 1995. I also started all four years at inside linebacker for Oregon State. By my senior year, I was the second-leading tackler in the conference, and I was one of the top defensive players as well, which means I had a lot of action.

I figure my time at Oregon State, I had three more medical-grade concussions that were hospitalized. And then I had probably 25 plus other concussions while I was there. I also ended up having a seizure during fall camp, which I kept a secret from the coaches. I had my roommate, and I told him, "Don't say anything," because I didn't think it was really any big deal. And it was a one-time thing. I didn't know how that would affect my playing time. I started having symptoms-

Malayka Gormally:

Can I ask you one thing? I mean, we don't typically hear about someone saying I had a concussion and was hospitalized. Were you hospitalized for a concussion?

RJ:

No, it was medical-grade. We have a team doctor, and he's an outside doctor from the hospital. So he met with me and had me have observations. So I had to overnight observation for that. So I didn't stay in the hospital. My dad brought me back, and I would end up staying with my dad present overnight to watch me. And that was the protocol then. That was as far as you went. My dad watched me overnight and made sure that I didn't stop breathing in my sleep, so to speak. And by the next morning, I was up watching film at 10:00 AM. So little different world. A concussion was you got your bell rung. That's as far as it was treated.

I didn't ever miss any practices for concussion. In fact, you look at the media guide; they say RJ is a durable player. He's never missed a practice since he's been here. That was a badge of honor. So you just worked way through it. I had splitting headaches every day. I was vomiting on the field from nausea and dizziness, and I was popping 1600 milligrams of Advil a day and burned a hole in my stomach. But, to me, as a 17-year-old, I didn't know any better, and nobody pulled me aside and told me any better, so it was just what you did to play. And I loved the game, so that's what you do.

Fast forward. I really have been pretty bombproof. I've never really been in the hospital, never had any issues. My life has been pretty consistent up until January of this last year. I started having some memory issues and was having trouble multitasking, started having some emotional type issues where depression started setting in. Unfortunately, at this time, my wife also ended up in the hospital for 17 days with an illness, and she was in the ICU. So what I've later learned from Larry Carr was that an incident like that can actually trigger CTE in you because of the stress hitting you all at once. And so, for me, that seemed to be the incident that put me to the next level.

And so from there, I ended up really spiraling downward, got to a real dark place. Pretty much every day driving to work, I was crying and had really dark thoughts; I could envision myself running off the road and just finishing it. I had a really short fuse, a lot of anxiety. I had lost all short-term memory and had serious brain fog where I couldn't focus on anything I was doing. I was starting to struggle at work. People were starting to notice the change in me. My mom said my eyes went dark. You know where it literally, even the color of my eyes changed in her mind. I pulled back from people, pulled back even from my kids, put myself in my bedroom at night on a self-imposed lockdown.

Meanwhile, my body was doing all kinds of crazy things. Hormonally, everything just shut completely down. My heart started racing. I got tinnitus, splitting headaches, you name it. A racing heartbeat, the memory issues, as I said, and I was really in a bad place.

And so I found online a group founded by, who's now my friend, Chris Boyce, the CTE Global Support Group on Facebook. And I went in the first day and shared my story and said I'm just looking to see if anybody else has these things happening and what I can do. And one of the guys in the group messaged me and told me about a study for football players that was going on with photobiomodulation. And I was really intrigued by that. And I said, "I got to do something. I can't live like this. I can't make it another day. I mean, I'm getting to minute by minute at this point with how much life I can cope." And they put me in touch with Larry Carr, and the next day it was a godsend. The next day, I spoke with Larry, and he had gotten me into his study, which is an open study with the University of Utah for photobiomodulation.

Conor Gormally:

Wow. It sounds like a really-

Malayka Gormally:

It's quite a story.

Conor Gormally:

Yeah, it's an incredible story. And it seems like it was one of those classic hallmark things where you do have a long stretch between the majority of your injuries and then the onset of these more typically neurodegenerative profile symptoms. And so were you still having regular headaches or feeling off and stuff like that, having persistent symptoms in that in-between period? Or was it mostly pretty fine?

RJ:

You know what? Your brain is an incredible piece of work. It manages to account for these things, and with these deficiencies and adjust your life, you don't realize these things are happening. So I think some of these things were surfacing earlier, but I had learned to accommodate them. So I became an OCD person and was very type A with everything has its place. I realize now it's because if it wasn't in its place, my memory wasn't functioning well enough that I'd be able to ever find it again. So, that type of stuff was happening. With sleep, I just knew if I slept in a certain way, the symptoms wouldn't happen, but if I laid flat on my back or turned a certain way, that would cause vertigo and cause the spinning and some of the other responses that I was having with the neural stuff.

So yeah, some of these things I think were always there or may have–they just weren't as prominent as this period in January and March. And they crescendoed in July of this year [2021]. As I was going into the study for the University of Utah, I was flying out to Utah, and I barely made it. I mean, I was just completely mentally, physically, emotionally tapped out exhausted. And that first day, we did some baseline testing, so they could see where we were at, and I don't have all the results in front of me, obviously, but you just know when you bomb something. And they tried to have me just get up from a chair with no hands. And I fell out of the chair. They had me do exercises just around cones that were things that, as a football player, I could have done with my eyes closed. And I had to look at the ground and spatially get myself together to do these things.

That memory game, simple match games–I couldn't do it. I could get two or three matches in, and that was about it. And so it became really evident to me then just how far it had gone and how far I had basically lived with this and how long I had lived with what was a very obvious issue. And in my mind, even though you can't define CTE now in the living, there was no doubt that every box was checked at this point. And I had to recognize what I was dealing with.

Malayka Gormally:

I have a couple of questions. Did they do an MRI or some kind of scan?

RJ:

Yeah, they did an fMRI there [functional MRI]. It was an eight-week study. What they did was, when we came into the study, on the first day, they did all your baseline testing. So they did some physical testing, mental [cognitive] testing, and then some emotional scoring type of testing as well, to see where you were at with those. And then they finished out with an fMRI to see functionally what was going on with your brain. And then, the next day, they gave us the Vielight Neuro Gamma device and showed us how to use that properly, and then gave us a protocol for using that. So we were to use it once a day for 20 minutes every other day. So that was the way that the study was set up for it.

And then we were to use it for eight weeks, and then they did weekly checkups on us to see that we were using it and to answer any questions and that kind of thing. And then in my case, so I started, I think the second week of July, and I came back in the second week of September, and that's when they did the follow-up testing. And I hadn't used any other treatments. I hadn't seen anyone else for any physiotherapy or the like. So really, this was pretty much the main treatment I was using other than some supplements.

Malayka Gormally:

I'd love to hear, of course, what the results were when you came back, but to back up for a sec, when you were super concerned before you got the light therapy, did you see any doctors, and what was that like if you did?

RJ:

Yeah. I was like many people dealing with either post-concussion syndrome or suspected CTE, all of these things shutting down and failing at once. In my case, I went from never going to a doctor for 20 years, literally to having probably two specialists a week that I was being booked with trying to figure out what was going on with me. Nobody in their specialty world could make sense of what was happening to me and how quickly everything had come on; seeing a urologist and hormone specialist to seeing an audiologist and an ear, nose, and throat person for the tinnitus, the hormone issues.

Seeing the neurologist and having your neurologists say, "Yeah, I'm not really into that CTE thing. That's not really my thing, but I'll refer you out to another neurologist in our group that is more interested in that subject." So even with the experts, there wasn't a lot of expert consensus, which is hard to hear. In some cases, you're gathering more on your own than you are from the medical folks.

I just wanted to see everybody I could. I figured if you can't diagnose this in the living, if I go see every specialist and they eliminate everything that it's not, that's only going to leave probably one thing left that it is. And with 50 something different symptoms that pretty much put me in the place where I am now recognizing that this is really one of a handful of options left that it could be. And based on my history, the most probable.

Malayka Gormally:

Did you notice anything during those two months that you were using the Vielight, and most importantly, what was the testing like when you went back to Salt Lake City?

RJ:

Well, the brief side of it is with the Vielight, they tell you that everybody has different results, and you may experience things or not experience things at different times in the use of the device. For me, I started feeling a little different about a week and a half in, and I was really surprised. I mean, I was in such a bad place that I was surprised to start actually feeling a little better that quick. I mean, honestly, to have four red dots put on your head and you don't really see anything, and you don't feel anything, you're like, "Is this for real? Am I wrapping Christmas tree lights around my head?"

There is a little bit of skepticism, and I understand that. And I had some, but talking to Larry and seeing Larry's story, I knew it worked for him. And I believed in his results–the [fMRI] scans don't lie, and his results showed that something definitively happened. Every key expert has reviewed his results and has said he definitely received positive benefits from using this. So I believed in the science; I just was not sure it would necessarily work for me.

But a week and a half in, I started feeling different. And I asked Larry, I said, "Is this something that ... I'm feeling different, I'm feeling already a little more upbeat. Is that supposed to happen? Am I supposed to feel it this early?" And he said, "Well, for me personally, I started feeling good about two weeks in when I started using it."

And so he and I are similar in the age that we started having symptoms, and both of us being football players, I was like, "Okay, I definitely identify with this." We literally played the same position. And other than a few decades between us, our lives were very similar. So I definitely related to him and started, unprompted, feeling like something was definitely happening.

By four weeks in, I was much more energetic. I was in a good mood. I was more active with my kids. I was more social. I was more high-functioning. The memory problems were going away. I was able to multitask again. At that point, my wife had even noticed, and she said, "I feel like I've got my old RJ back." And that was pretty amazing because we had had some talks, and I had thought I had been hiding some of this stuff from her and my mom.

And they both said, "No, you were a different person. I didn't know who you were. I felt like we lost you." And they both said that at one point, separate from each other. And that was really crazy for me to hear, because you think that you're doing so well, keeping this to yourself and trying to work through it. And everybody had already seen what I had not revealed. But they even made the statement, both of them separately, that my eye color had changed. "You're back to your pretty blue eyes from the dark eyes that you had." And they don't talk a lot, and they were in separate places when they said it. And that was mind-blowing to me too. I'm like, if this isn't an affirmation of what's happening and what's working, I don't know what is.

So that was the four-week mark, which was halfway—September, a totally different situation. July, I didn't know if I was even going to make it through the plane trip. September, I was fired up. It was like a football game for me. I was ready to play. I was anxious to get on that plane. I was excited to get on the plane, and I wanted to show how well this was working and how well I felt. And so I was really excited to go see the team. Again, they're all wonderful people. They're very caring and nurturing, which is a big part of healing–having people around you who care. So that's another great part of this, but I went back and just felt like I owned it.

In the physical tests, I was shuffling like I did when I played football. I mean, I felt fast. I felt focused. I wasn't looking at the floor. I could get up on my own. I could balance. I was standing on one leg. I was doing all the things that a "normal" person could do. My memory felt spot-on. The first time I went and took tests, it took me pretty much all day to complete these tests. And I had to get my scan at 7:00 PM because it took me so long.

The second time I took the tests, I was done way early. They had given me six hours, and I was done in an hour and a half with all the tests. So it was just that much of a difference, and I felt great on all levels. It made me feel good to know that when you hear about CTE and you read it's incurable and it's a progressive disease, and there are all these negative connotations that your life is not going to ever be the same, but to feel like I had stopped it or in some cases reversed some of the symptoms was pretty exciting.

And so now I've become the biggest advocate of it and trying to tell anybody I can who's suffering, please give it a try because it has changed my life that much. I don't think I'd be here without it, frankly.

Malayka Gormally:

Wow.

Conor Gormally:

That's really amazing.

Malayka Gormally:

That's quite a story.

RJ:

Thank you.

Malayka Gormally:

So they did an fMRI, right? At the end?

RJ:

Correct. Yes.

Malayka Gormally:

How did that compare with your fMRI at the beginning of the study? I know you're a layperson, but how did that compare? What did they say?

RJ:

Honestly, they were still compiling some of that information. So I don't know all the results of that. I know that I obviously was in the clinical spectrum of CTE symptoms and had what would be considered a pretty serious symptom list of issues. But I don't know, on the scans, if there was any differential on that or how that turned out yet.

Malayka Gormally:

Did they tell you they would let you know those results at some point?

RJ:

Yeah. They're still compiling that information. One of the things Larry did say, though, was, "We're really excited about what we've seen from the results." There were 35 people in the study with me, and he said basically that if this was big pharma and if we had put the same results out that we got from this, it would be national news. But it's not, and it doesn't have that financial backing on it yet. But that was really encouraging to hear because there were a lot of people that I met through this study that I became friends with that were suffering as much as me, and in some cases worse, that also got relief from the process. So it gives me hope that this could be a way to help people have a little bit more comfortable life while dealing with this.

And one of the interesting things that they're also doing is they're currently using photobiomodulation with, I believe, BYU's team of current football players. Because again, this photobiomodulation, what it does with your mitochondria and ATP, it's a super pill, in essence. I mean, it really provides that energy for your body to repair and recover. And so you don't have to wait till you have these symptoms to use it. You can use it while you're playing. And that, to me, is a really intriguing part of what this potentially could be. As Larry said, he wanted to save football; you could potentially do that with something like this [photobiomodulation], that you have active players using this. And recovering just like, if you sit in an ice tub for your back, we could finally start taking treatment for your brain and care of your brain while you're actually playing– what a novel idea.

Malayka Gormally:

Yeah. I read that they're doing the photobiomodulation this football season.

RJ:

Yeah. I believe so.

Malayka Gormally:

So you were in an open study with 35 individuals, and the researchers are compiling the results, and they will publish them at some point.

RJ:

Oh yeah, absolutely.

Conor Gormally:

Well, I will also be really excited to hear. I'm curious, I might have missed this, but are you still using the equipment after the trial has ended?

RJ:

Well yeah, that's actually a great question. That's an important follow-up to this study, which is one of the things that Larry learned from his own experience–he was "patient one" with using photobiomodulation. So that's interesting, he's a professor in neurology and is also a football player, and he also was "patient one." So there's nobody better to hear directly from. And he had said that in his study, they pulled the unit away from him for a month to see if he would regress.

And he did actually regress during that period when the photobiomodulation was not happening. So when you do this [photobiomodulation}, it is a lifetime choice. If I don't use it, I will regress. This is a progressive disease, so it's really imperative that you stay with it and use it. It's really easy to use. Soon as I get up in the morning, I throw it on my head for 20 minutes. I relax in bed for a little bit and pet my dog. And it's done. It's a great way to start the day. I mean, I have enough energy that I don't even need a cup of coffee, so it really does feel like it energizes your brain that much.

Interview continues below

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Read our page on photobiomodulation and to learn more about light therapy.

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Malayka Gormally:

It's quite the story, and it's very moving. I'm so glad that you're doing better and that you're back to working full-time. Is that correct?

RJ:

Yeah, I'm working full-time. I'm in construction, so I read blueprints every day. I have 15 to 20 trades that work on my projects. They're highly complex projects that I have, and I can carry 20 to 30 projects at a time. So you do the math on that. It's an infinite amount of variables that go into each project. For somebody like me to go down to where I was only able to follow a single track at a time, you can imagine how time intensive and frustrating that would be to try to do something that has that much complexity and variables to it and not have your brain function right. But now everything's back to what I would say normal. I'm probably 80% to 90% of what I was pre-symptoms. So I feel highly functional and can do my job as well as I did prior to having the issues.

Malayka Gormally:

Wow.

Conor Gormally:

I'm thrilled for you and so appreciative that you were willing to talk with us and share your amazing story with us.

RJ:

The only other thing I'd like to say is, thank you for putting your organization together. You really have a well-written site, and it's very well organized, and it really has a lot of beneficial information. So I hope people dealing with concussions or CTE can find your site and run through it. And thank you for speaking with me and allowing me to shed some positive light on dealing with suspected CTE. The media and the NFL have done a pretty good job of showing the dark side of what happens with untreated CTE and guys that may not even recognize they have it. Still, a lot of us out here are dealing with it every day and supporting each other, looking to groups like yours to support us and give us good information. That helps us live as normal a life as we can; the important part is that it's hard, but being able to feel like there are people supporting you and caring gets you through the day a little easier, so thank you.

Conor Gormally:

Thank you so much. That's really meaningful. Thankfully I've only had to deal with about four diagnosed concussions myself, but it's a really crazy, scary thing out here. And I want to let you know that our interns helped create a new resource page on neurodegeneration for us as part of our December internship program. This new page outlines four major neurodegenerative diseases associated with concussions and repetitive head impacts in a reasonable and not inflammatory way. So that's now in our "About Concussions" section of our website.

RJ:

Oh, great. Yeah.

Conor Gormally:

So we hope to continue to be a resource.

RJ:

Thank you.

Conor Gormally:

We interviewed Dr. Larry Carr as part of one of our internship programs. So if you're interested, if you're curious, we have a blog post about that as well.

RJ:

Yeah. He and I have become good friends, and we chat pretty much almost weekly. So I feel very blessed to have met him, and he's a wealth of knowledge. So yeah, I'm sure he was a great interview.

Conor Gormally:

Yeah, he's great.

Malayka Gormally:

We also have a blog post about the two case studies that Dr. Carr was a participant in when he was "case one." It's a blog post that goes into depth about those two case studies. It's super interesting.

RJ:

Oh, awesome. Yeah. Yeah. I've seen one of the videos on photobiomodulation with Larry, but I definitely will love to read your blog as well. It's amazing, the science of it. It's great that they've documented just how well this works because it's pretty mind-boggling. It works for other things too. My father-in-law had knee surgery, and they were concerned that he wasn't getting the range of motion and that it wasn't healing properly, and they were afraid they were going to have to go back in on him.

I bought him for Christmas a photobiomodulation pad, and he wrapped his leg for two weeks with it, and his wound healed up and closed. They had suspected he even had a possible infection prior, and with the photobiomodulation, it had healed up quicker than expected. And he had a full range of motion after using it, which he did not have prior to using it, which was why they were going to give him a second surgery. So he just avoided having a second surgery. And the only thing he did differently was photobiomodulation. So he's another believer as well. So it's pretty awesome.

Malayka Gormally:

Yeah. The use of red light for wound healing has been used and pretty well accepted for about 30 years. The idea of using infrared light [the type of light used in the Vielight Neuro Gamma] for the brain is relatively new.

End of Interview – see below for blog posts about light therapy

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Please see our page on Photobiomodulation for more in-depth information about this treatment modality under research.

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Related information on our blog