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Daniel Carcillo on Traumatic Brain Injury

Daniel Carcillo
Daniel Carcillo

Daniel Carcillo, a retired two-time Stanley Cup winner, opens up about his experience with traumatic brain injury.

At what age did you know that you wanted to be an NHL player?

15, I think. Yeah, so I was never one of those kids that thought from a really young age that I was going to be a professional. I just really liked the game, I really liked playing it. When I was around 14-15, I started getting scouted. I played AA my whole life, and then everyone started telling me if you want to make it you have to go into the AAA. So I took a shot at AAA, then I got drafted to the OHL. I just kept playing, just kept working harder then everyone else. Things happened in my life where I ended up really needing the game, as an anger management release.

Then, it just grew into something where I made the decision to move away from home. Once you move away from home, your kind of all in. I chose the OHL over university, as it was the quickest path towards becoming somewhat successful at the game. Then, I had a really good first year, was drafted, went to under 18ths and then 73rd overall into Pittsburgh’s system. Then I turned 19 and went professional.

Did your first brain injury happen on the ice?

Yes. They were all in the NHL, I don’t really remember the first 5. But I remember the last two because the symptoms were really intense.

How many have you had in total?

7 diagnosed and probably hundreds undiagnosed.

What made you decide to become an advocate for brain injury?

It was the last year of my career, 2015, my son was born in November of 2014. I had watched Steve Montador struggle with no help to regain his brain health for about a year and a half. I tried to help him the best I could, I didn’t really understand it because when you’re in your career its not something that you think about or are educated on. People don’t even use the term concussion in the industry – not doctors, not coaches. He ended up passing away in February. That was really difficult, I had already made my decision that I was done.

You become expendable – I just wanted to feel something else, I was so frustrated, sad, and angry that they would put me in when I clearly asked after his death “Please don’t play me anymore”.

I got in a fight that game, which resulted in my 7th concussion, the symptoms were really brutal. From a symptomology standpoint they were: me not wanting to have anything to do with my son, anxiety, depression, light sensitivity, couldn’t look at any screens for a couple of weeks. 

Then you hear things in the NHL, stay at home, come back to the rink when you’re symptom free. So when you go back, what they do is put you on a bike, and if you can pedal for 5 minutes without exasperating your symptoms — you’re okay to keep going. So we see the same type of baseline all the time, its really easy to pass. Once that’s completed, you can continue playing.

I was spiritually, mentally and physically dead. And I didn’t want anything to do with the sport anymore, I was trying to be the best teammate I could. Keep the guys who weren’t used to sitting out in a good mood, warm up the goalies, play music — be a good guy essentially.

We started getting towards the Stanley Cup Finals, and I called the Players Tribune and I said we should do a story. We have an opportunity here that we don’t usually get. It’s not the same as in Canada where people are talking about hockey all the time, this was our chance to reach hundreds of millions Americans to tell this story. Why not do a PSA, an awareness piece. The way that we care for concussions is really messed up, what happened to my friend is going to continue to happen if we don’t do something about it.

This spiraled into me retiring and having to make the decision of whether I wanted to keep signing autographs for a couple hundred grand, could have done it, or if I tell the truth – which is what Steve would’ve done if god forbid I passed away and hold people accountable.

You start figuring out the lies that they told you. About these collision sports by these doctors specifically. You start realizing they have heavy affiliation to the league and the team about the players. You just start putting two and two together and you start getting more upset. I chose to cut them off and make a decision to hold them accountable, to make parents know the risks of putting their kids in hockey.

I made that my life’s goal and advocating for the recovery of my brain health and quality of life, the symptomology that I was having, and the treatments that I was trying that could help me.

I’ve been doing that for about 6 years now, I’ve found some really amazing recovery over the last 18 months. Now its about talking about that, but also highlighting these treatments that could help symptomatology now. Which I think is extremely important, because the number one cause of death after TBI is suicide. We have to provide hope.

Hopefully that’s what my story can do. I can be a testament to getting better. I feel better. I feel better than I did when I was lifting two Stanley Cups, I was close to death anyway.

Now I just keep getting better every day.

I’d love to hear about your new business venture!

It’s been a progression over the last 6 years, 4 of that was really dedicated to researching concussion. What structurally happens in the brain as far chemical dependency, why we should check our hormones right away, and kind of what you can do immediately.

A lot of treatments aren’t validated, which is an issue (psilocybin) – I ended up getting to a point where I was always tracking QEEG, bloodwork, different protocols that I would try. One month it would be neurofeedback, in combination acupuncture and hyperbaric chamber – I would do that for say six months, and then test.

I got to a point after 4 years, spent around $200,000 on all these different treatments and I still had tons of abnormalities. My blood work was still messed up and that increased my intensity of anxiety and depression that ultimately lead to suicidal ideation. If you’re hopeless and feel like you’ve tried everything, then you think you’re a burden to your family and everyone around you and you start to make plans to unburden people – because you think that’s the right thing to do. Thank gosh I had a former teammate who invited me to a farm to learn about CBD genetics, medicinal mushrooms – these things are so heavily stigmatized, I still held a stigma – but I had just stepped away from hockey, so I went to the farm. They ended up introducing me to a big dose of psilocybin and then I tried it, and it saved my life.

It was extremely difficult, but what is did was help the destructive thought patterns that I was living in – with anxiety and depression and impulse control issues, very afraid of the unknown and neurodegenerative disease and not having a job and cutting off a community that I knew. Just a lot of stressors.

After that ceremony, a bunch of my symptoms started to go away – which is really strange. Sleeping better, felt more connected, my brain fatigue was lifted, my anxiety improved, my light sensitivity and noise sensitivity started to diminish. BUT I also had to put the work in, I have to be very careful when saying this stuff, its not a miracle drug, but it helps you create good patterns. Break up bad patterns, and then stay in those good patterns. The more you use it, the stronger these good patterns and these improved pathways become solidified.

So I went home and continued with a maintenance protocol, with the psilocybin and other adaptogens and I started to feel really good. I started to see it in my face, my family started seeing it, my problem solving, concentration, focus, became better.

I stayed on this path for 6 months and I retested – as I normally do. For the first time in 5 years, I had no abnormalities. My brain was structurally changed. My blood work came back testosterone was clear as well as my cortisone levels (stress hormone).

What I saw additionally was a complete change to my spirit and attitude about my injury which I spoke about before. That feeling of hopelessness was traded for thinking okay maybe I can get better. 

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