Working on Yourself with Paul Bosworth
Show Notes:
Recovering from your brain injury requires you to work on yourself with persistence and a sense of self-love. As AMAZE Brain Injury Group speaker and coach Paul Bosworth puts it, “we’ve turned the radio dial a couple of stations over and now we’re learning a new tune.” Today we speak with Paul about what he has done to overcome some of the most difficult aspects of post-concussive syndrome. Early in the episode, we talk about how Paul received his brain injury before focusing on his role in raising awareness about these injuries. As he highlights, it’s a journey to discover how your post-injury brain functions, along with how you need to support it. Paul then opens up about his symptoms and how he’s learned to celebrate his everyday victories over his condition. After discussing the incredible recovery that Paul has experienced due to hyperbaric oxygen therapy, Paul shares his hard-won insights on living with a brain injury. His advice touches on the benefits of limiting your anger, practicing self-love, and aiming to constantly improve yourself. Later, Paul chats about the products that most help him. Tune in to hear more about Paul’s story as he unpacks the value of working on yourself.
Key Points From This Episode:
Introducing today’s guest, Paul Bosworth of the AMAZE Brain Injury Group.
Paul shares the story of how he survived his brain injury.
Exploring Paul’s work with the Brain Injury Advisory Council.
Reflecting on the gradual increase in awareness of post-concussive syndrome.
How aspects of your brain might perform differently each day.
Paul talks about his role as an advocate and speaker.
Hear about the symptoms that have most impacted Paul’s life.
Learning how to celebrate the little victories over your condition.
How hyperbaric oxygen therapy helped Paul take his life back.
Paul’s advice on living with post-concussive syndrome.
Why we should never stop working on ourselves.
What Paul would most want the public to know about brain injuries.
Paul discusses the products he uses that add to his value-of-life.
Paul’s final message to listeners; help is out there and every brain is different.
Links Mentioned in Today's Episode:
AMAZE Brain Injury Group
Brain Injury Association of America
Find Our Guest:
Paul Bosworth on LinkedIn
Paul Bosworth on Facebook
Paul Bosworth on Twitter
Follow Post Concussion Inc on Social Media to stay up to date on the podcast
Transcript - Click to Read
[INTRODUCTION]
[0:00:02.1] BP: Hi, I’m your host Bella Paige and welcome to The Post Concussion Podcast. All about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussion and post-concussion syndrome.
Welcome to today’s episode of The Post Concussion Podcast with myself, Bella Paige and today’s guest, Paul Bosworth. Paul has done quite a lot in 10 years of advocacy. He is on a mission. He is the driving force behind the AMAZE Brain Injury Group. That he began with a couple of people back in 2011. Today, the AMAZE Brain Injury Group thrives by opening family’s eyes to alternative options that certainly help this where current medical practices often fall short.
His goal is to gain awareness for the leading cause of death and disability in the United States.
[INTERVIEW]
[0:01:34.5] BP: Welcome to the show, Paul.
[0:01:36.5] PB: Hi, thanks for having me.
[0:01:38.3] BP: To start, can you tell everyone a bit about how you received your injury and how long ago it occurred?
[0:01:43.8] PB: Sure. I used to work in corporate sales with IBM, later we became Lenovo and that was PCs, computer sales, software sales, implementation, the whole nine. My capacity to do what I needed to do was massive and involved a lot of moving parts, a lot of people.
I was prepping for a 6.2-million-dollar call, eating lunch. MSNBC was going, the phone was ringing, insta-message was going and as I took a bite of chicken fried rice, it got stuck in my throat. Several seconds after that, I found myself on the floor passed out, smashing my head against the floor, choking. And that thrashing around on the floor jogged the food that was stuck in my throat, at least loose, so I can at least take a breath.
Lack of oxygen plus blunt trauma was a recipe for me to get post-concussive syndrome. What is that? I don’t know what that is, I called my girlfriend, I have a hickey on my head, I can’t see, I just ripped my throat in four places. She’s coming over, I don’t know what’s going on, pandemonium, my life has taken a turn and I didn’t know where I was going.
[0:02:57.0] BP: Your injury is so different. People always think brain injury, “You must have been in sports, that’s how you got your concussions because it’s really common.” But it’s still not actually that common, it’s just, the voices out there are often athletes but people are missing a huge portion of the population where people are getting brain injuries, I had a woman on the podcast just last week where we did a recording and she walked into a glass door at work.
Didn’t see it. She was on a mission, walking, and it’s so easy for people not to realize that brain injuries can happen at any time, anywhere, no matter the place. It’s really important that we share that with everybody. Paul is on the Brain Injury Advisory Council in the US. Can you give a little bit of an explanation of what that is?
[0:03:44.4] PB: I said I reached a learning curve after I got my girlfriend to bring me to a trauma one center and they treated and released me. I was not well and I knew I wasn’t well. I knew I wasn’t right in the head, as people say. That had me on Google searching, searching, searching. I found an oxygen therapy which set myself different from the rest of the pack and sure enough, I found myself separating and pulling the pack behind me, if you will.
Once I found myself alone, which everybody does, I went to Capitol Hill because this is such a secret, silent, obtuse illness. You don’t see it unless you can know what you’re looking for. I had to make ties on Capitol Hill because those were the people that understood me. Those were the people that got me through to Brain Injury Association of America.
And what I ended up doing is I taught myself into being a sales guy. I taught myself into being a part of a group that’s highly unique, we thrive every day to try and get our brains back plus the next person. It’s a perspective, to use an old archaic term, it’s a mover and shaker. Who is doing something about this with results, with success?
I represent the state of Louisiana, the count is not coming to mind right now but it’s around seven or eight people that — we support brain injury of America, Brain Injury Association of America. We give guidance to them as best we can from a survivor’s perspective, which is just plain smart. It’s a matter of, okay, now that I realized that everybody’s on the same page, even my doctor is telling me, “Well Paul, we just don’t know everything there is to know and giving feedback is only going to help me help you”. Now, I found myself on not only one team but now another team. And these teams keep building and so we were looking for people in the United states. Not the world yet but we got to start somewhere that are thinking globally but acting locally. They are putting into perspective; “Hey, I learned this from somebody in Australia or Israel and I want to bring this to my home.” The only other person outside of the United States that I know of that’s a pro in hyperbaric oxygen therapy is in Israel, Jerusalem specifically. That’s not going to be readily available to this hundred-thousand-person, small town that I live in. So the internet is my friend.
[0:06:23.0] BP: Yes, I agree. I really like what you — the invisible injury thing is huge. People can’t see what you're going through. And when you’re going through it yourself, especially at the beginning, it can be a lot of shock. You don’t understand what you’re going through, your doctors are telling you — “Just go home,” essentially, is very common misguided perception, “Just wait it out, it will get better” or you have the doctor who just says, “This is what you’ll have to live with.”
And that’s not true, there’s lots of things out there to help people. It’s also really important, I love that you guys have people that have experienced this because it’s really missed. There’s lots of doctors that are really trying but if you’ve never lived through it yourself, it’s very hard to understand all the symptoms and what it’s like to live with. And what people need help with if you're just on the outside. I think that’s really important.
[0:07:13.3] PB: Yeah, awareness is what we’re about at a core level at the advisory council. So every year, we go to Capitol Hill in some of the same halls that a lot of the bills and laws are written to enact change. And it’s been a very slow process but come to find out here recently, that process has been stepping up a little bit more incrementally because brain health is now a thing. It’s the new cool thing to talk about.
Advertisers are knowing it, they’re getting money from these supplements and it’s a good thing, just make sure that if you buy something that it’s third-party tested. Or, you know, that it has good products in it because the market is being flooded with stuff. And I’m not going to drill down necessarily. Folks can reach out to me if they want to but it’s a slow-moving process. It took 12 years to meet you. So why would it not take a couple of more years to get something that’s founded and good as a supplement, if it doesn’t exist already. Some of them are great and have been there the whole time.
[0:08:18.6] BP: It’s actually kind of amazing that brain health, as you mentioned, I’m seeing more and more supplements for sure. “Take this supplement for your brain, take this supplement for your brain.” And you're right, they’re getting flooded, they’re everywhere.
Now, which is definitely, they didn’t exist when I started going through this. At least not as excessively as they do now. That is a good thing, that I think it’s becoming more common. That we’re focusing on our brain health. We also need to focus on brain health after an injury but we’re a long ways from that becoming a huge thing sadly.
I just find it’s still really small. The amount of people that understand what a brain injury is and what you're going through, the population is still too small. But that’s okay because that’s why we have things like your AMAZE foundation and this podcast to help educate more people more and more about what so many people are going through that they can’t see.
[0:09:10.5] PB: It’s the best job I’ve ever had as an enabler. I’m flipping the word enabler to a good thing. What I’m doing is not diagnose, it’s enabling people to see the bush or the tree or the car in front of them. Or these different objects that they didn’t see before that they’re waiting for their doctor to tell them.
What I do is I give them insights into what product A has done for me, product B has done for me and let them enable them to try it. Just to see, because once you get to the point of frustration beyond control, then you realize, “Okay, now what do I have?” That took me two years to find that spot is — “what do I do now? Where do we go from here?”
[0:09:55.5] BP: I got asked that just the other day. “What’s your plan now?” I had to think.
[0:10:01.1] PB: Sometimes they have to wake up the next day.
[0:10:02.9] BP: Yeah, it’s like, “What’s your health plan?” “I got to think about that.” I feel like I should have that more together but I don’t.
[0:10:11.4] PB: The brain is going to be different on a Monday than it is on a Tuesday, than it is on a Friday. It’s going to be very different on the Saturday afternoon when somebody’s giving you a gift from their heart. You got to know that there’s different frequencies. Those different aspects of our brain that can still work very well after brain injury but other parts such as I consider bad neighborhoods.
They’re just damaged, counting and reading through legal documents is not my thing. Watch me, I look like I've just learned how to count money. And you're like, “What are you doing?” I’m like, “I’m counting money, give me a second” Because I have to focus on sequencing. I’ve given up reading and I say, “Since I live in a highly catholic area for lent.” Yeah, I gave up and now it’s gone but the only thing that I do read are short, three-minute speels on social media and text. Those I read so I can get to the person to see them so I can speak to them.
I won’t hang on the phone or hang on the text for hours and hours and hours and go, “I don’t even know what I’m saying. I will get lost in text.”
[0:11:19.6] BP: Yeah, I find a big thing about texting is also, the message can be off, right? You read it and you’re misinterpreting what somebody’s saying and it’s hard to really understand a lot of what someone’s meaning.
To go on with our mention of the AMAZE Foundation. Paul is a speaker and a concussion coach for the AMAZE Foundation, which is a network of leaders who are committed to raising brain health awareness and providing support education and so much more. What does being involved with the AMAZE Foundation mean — and helping it help our listeners.
[0:11:53.0] PB: As you can tell, I’m pretty outspoken on getting my brain back. And I have no choice due to my huge empath side, which is to share. I’ve been a sales person all my life and now, I’m selling brain health. Don’t know how to put a price tag on it, not sure if you do but when I started out on my own, walking up to a guy that ran a business group called Rotary in Arlington and I looked at him straight in the eye and I said, “I’ve got a story to tell and this story goes beyond me. It goes through our community and it’s going to be something that you’re going to be interested in. And I’d love to come and talk to your group.” And I was terrified. I’ve been told for months and months and months, “You’re not going back to work, you’re not going to meet them, not going to, not going to.”
Here I was defying that and since, what was that, 2009? 2008? By the way, brain injury services in Springfield, Virginia started this whole thought process but I enveloped it on my own because that’s how I work. I do things out of my heart and sure enough, I went to talk to this group. It was 30 some odd people and from that day, from that talk forward, every time I do a talk, there’s an adult, a full-grown adult in tears saying, “I need to talk to you.”
I stop them and I shake everyone’s hand or take pictures with them or whatever. That person has got an hour-long conversation about their life and how they had a concussion and this part was never addressed. To me, that’s trying to solve the problem versus complaining about it. I was not raised to complain about something. I was raised to do something about it.
[0:13:42.1] BP: I really like that, we’re here to make a difference, right? I understand that feeling. I remember actually, I was sitting in a high school, there was a guy who came in and did a speech. He had a bunch of mental health problems that I was going through my post-concussion journey at the beginning there, where my mental health was really low.
I remember watching it and it actually made me cry. And my girlfriend’s sitting next to me and a lot of the things that I was going through, they were invisible so she didn’t understand. Those talks can be so meaningful to — out of the few hundred people in the audience, even if it’s just one or two people, it can make a huge difference.
[0:14:18.3] PB: Yeah, the largest group that I’ve spoke to was a group of kids, youth interested in medical science. These were high school kids and all of them put down their phones, all of them put down their games. And they were in shock because I did my story with — before oxygen therapy and then after oxygen therapy. And that’s a show stopper, I have to put it way further back into the presentation because everybody’s just gawking like, “What did you do?” Including my neurologist in Washington DC.
[0:14:51.4] BP: Nice.
[0:14:52.1] PB: They said, “What did you just do?” I said, “I jumped into an oxygen chamber and woke my brain back up.” I’m not well, I’m not perfect, but I’m better and I’m not sitting in a chair crying as I did for at least two years.
[0:15:05.6] BP: Yeah, it can be a hard road to go down. So we are going to talk about the oxygen therapy after the break but if you ever want to go look into the AMAZE Foundation, you can find it at amazefoundation.org and you can get any information that Paul has talked about and you can also reach out to him on there. We’ll talk to you soon.
[BREAK]
[0:15:31.5] BP: Want to create awareness for concussions? Want to support our podcast and website? Buy awareness clothing today on postconcussioninc.com and get 10% off using ‘listen in.’ That’s “L-I-S-T-E-N I-N” and be sure to take Post-concussion Inc. I your photos, we’d love to see them.
[CONTINUED]
[0:15:58.6] BP: Welcome back to the Post Concussion Podcast with myself, Bella Paige and Paul Bosworth, our guest today. So Paul, something I’d like to ask a lot of guests is what symptom affected your life the most?
[0:16:12.4] PB: I have to pick one?
[0:16:12.8] BP: No, you can pick a few.
[0:16:14.3] PB: I’m going to go with overwhelming fatigue.
[0:16:16.7] BP: Okay, yeah.
[0:16:17.8] PB: Secondary to that is my speech. You can’t tell it now because I did the oxygen therapy and bounced that out of the boat. But fatigue, it was unbelievable. Breakfast would wear me out. And breakfast was a bowl of cereal and some milk poured into it with a bowl and a spoon. That would literally wear me out to the point where I would take an hour nap just doing that. Sometimes I’d pass out just because I was so exhausted. We were talking during the break but, in your impact has now found my zero mark and all I can build from that.
“What do I need to do to build on my energy so I’m not asleep by 9:00 where I just ate breakfast at eight?” And I would make deals with myself and I’ll make more deals with myself. If you can walk around the block, you can have stamina to withstand the rest of the day. No, I won’t. It was a lot of challenges and sometimes trial by fire. And sometimes pushing too much and I was relegated to a three-mile radius where I could drive for the first six months and that was extended to eight months and I could not drive more than three miles from my house.
That was pretty much get groceries, get groceries, and get groceries. Whenever I would get them, I would be so exhausted, I would get chocolate chip cookies and a big gallon of milk and 120 load of washing detergent. And when I moved back to Louisiana from Washington DC area, I had seven gallons of milk in my refrigerator and I had 10 big, huge bottles of 120 load laundry detergents in my closet. It’s funny how this pandemic has forced us to realize that the brain does what it does.
[0:18:09.1] BP: Exactly, yeah.
[0:18:09.5] PB: It’s not going to make sense every time. I mean, with us in the United States, it was — everybody go buy toilet paper.
[0:18:15.3] BP: That happened here too.
[0:18:16.6] PB: Yeah, everybody go buy toilet paper, great, go buy toilet paper, we have to do something. By the way, the Chips Ahoy would not make it home. It wouldn’t and I would just down that gallon of milk. But it was the subtle little things that added to my fatigue is — what I started to focus on because again, I got insights early on with brain injury services in Virginia to say, “You know? This is your rest of your life buddy; this is what you're going to do.”
Little did I know I was going to be on a podcast with you. But I’m glad to say it that I can. I’m glad that I’m able to. That I’m not dangling from a tree branch or worse. Wrap my car around something because it’s extremely frustrating to be extremely overwhelmed and exhausted and not have any rope to get out of that hole.
[0:19:07.0] BP: I dealt with the fatigue as well. I still have a nap actually, every day, usually in the afternoon. I have to, otherwise, if I don’t, I really notice. My symptoms get worse or I’m just exhausted like my brain doesn’t work at night.
[0:19:21.9] PB: It’s a matter of function. That’s what was being passed up in my care, which was function because I wanted to stop my mouth from saying curse words, they wanted to stop me from not sleeping well so that would make me sleep too much. Look, I get it to what you’re saying.
[0:19:40.6] BP: I said too much because when I started, a lot of the recommendation was, go in a dark room and sleep. Then I kind of fell into the habit where I was — so that tiredness, like you said, you had breakfast and you’d be exhausted.
I eventually got to the point where I couldn’t get out of bed or I got out of bed and then I’d lay at the top of the stairs, 20 feet from my bed, and I talked to my mom. And she got used to it and it’s kind of my day a lot of the time. And my little sister always makes jokes.
“You kind of lived in your room for two years.” I kind of did. And I would go out but then I would pay for it. I was so tired all of the time just exhausted. It’s very important that people realize that it’s brain fatigue. I also think your brain is healing, right? As your brain heals, it doesn’t have the energy that it needs to continue on through your day so certain things would wipe me out way more than other things as well.
[0:20:31.8] PB: I took my first two weeks of my brain injury as a vacation. And my girlfriend would take me wherever I wanted to go because, remember, I couldn’t drive. And we would take the subway to the National’s games and I’d come home and I’m like, “I don’t think I can get all the way back to the apartment.” I don’t think I can get there. And I would just buckle. And she would be like, “Get up, get up.” I’m like, “You’re going to have to get a cab.” And it’s three blocks away but I realized that making the 20 feet to your landing of your stairs, that’s a victory.
[0:21:04.7] BP: That’s all I got.
[0:21:06.2] PB: I take it as a victory. And then maybe going to the middle of the landing, you know, the next landing down — that’s another victory. And you break things down like that and you’ll win.
[0:21:16.1] BP: Sure and I did start to get better when I learned how to push myself out of the — on living in my room. I was doing a lot of therapy as well but I pushed myself — that you need to actually be able to get up and live. And it took some time but I did get through it and today, I would still get tired a little bit easier than most people. Some days, I skip that nap and I usually notice later especially if I have to do anything that involves really thinking.
I find I can skip the nap if all I’m going to do is watch TV or sit and hang out with friends. And just talk but I might be a little off. But it’s a bit more relaxed but if it’s something where I am to do school work or some work for the podcast or the website, then I need that nap, otherwise my brain, as you said, function is just not there. Something that is really important that helped Paul is the H-bot, as you term it. It’s the hyperbaric oxygen therapy, so how did you find that helped you?
[0:22:14.3] PB: Thanks for clarifying. I do speak in acronyms, sorry, not sorry. So, chewing off as best as I can, you use the word ‘pay for it.’ I was paying for it hourly, I was paying for it daily of what I did before. If I did something new, I’m going to have to have a nap before I do that. If I’ve done something I’ve done before my whole life, I don’t necessarily need a nap to work through it. I just needed a nap to stay through it.
And my life consisted of three people. They would help me make my own choices over $50 because I had to move. I had to pack, I had to get out of DC. It got me great gains with the institutions that were there but it came to the point where I was looking at huge dollar signs as to what I was doing. Or what I was looking at. And www.hbot.com is the doctor that is spearheading the whole oxygen therapy thing. And to put it into perspective, when I did it a couple hundred people in the world had done it with better results.
Now, it’s a couple of thousand people. And they all go into New Orleans and they past the drinking and the past the fatty foods. And they past the sugary desserts and they go and get healing on the other side of the river from New Orleans, in New Orleans. It’s Marrero specifically. And Dr. Harch was doing a presentation. It was going to be an hour-long cocktail party and then an hour-long presentation. 10 minutes into the cocktail party, we went straight into the presentation.
He had brought back a local singer’s words because she had some brain issue where she forgot her lyrics . And I was like, “I forget my words all the time.” They call it Aphasia. And then I had — saw another one of his patients that did something else and I’m thinking, “Well, let’s try this.” My parents left me some money and I researched it for two months. And that’s, in and of itself, climbing Kilimanjaro without any oxygen.
And I cold called a local doctor here. I said, “What do you know about brain injury and H-Bot?” And he said, “Well, I did it with a friend of mine’s son and he graduated from college.” I said, “I’m in. I’m in, I want to try this.” I have nothing that’s given me hope and I keep getting these medicines every three months and they are just bringing more and more anguish and pain. And the first time I called in, I hung up on him because I couldn’t get the words out because my stutter was so bad.
If I pushed the words, they would, “huh-hmm-ack-hmm-oh” and that is all you’d hear. And he said, you know, I’d choke out. I want to get in the chamber, I know about this Dr. Harch and he said, “It sounds like you know what you’re talking about. Call me back.” And it took four or five or six months. And I called him back and I’ve talked to the doctor, which is real odd. You know, you usually talk to somebody at the front desk and then the nurse, then the other nurse.
No, I needed to talk to him. And prayer was involved and lo and behold, he said, “I think I can help you. 40 is the first threshold to get to, let’s try it out.” And he sat there as I did my first dive and watched. And — funny. As I started to get back in my brain, other people noticed it, not me.
[0:25:39.0] BP: Oh yeah.
[0:25:40.2] PB: My stutter would be leaving the conversation and fluid words would be entering and they’re like, “You know what? You don’t stutter anymore” and I’d frown, “No, I guess I don’t” because it was the first person that I was working on so why would I see it from my outside.
[0:25:56.0] BP: I had the same thing with my mental health, be like, “Oh, it is so nice to see you happy” and I was like, “Oh yeah, I am happier now.”
[0:26:03.9] PB: It’s so individualized, every brain is different. And it is so individualized, no wonder medical science goes, “Oh, let them figure it out themselves” because it’s how many people do we have on this planet? Eleven-ty billion, no that’s not a word but it’s 11 gazillion people. And how are you going to address each and every one of them? Well, that’s on us to find our way to dig our way out.
[0:26:26.8] BP: Yeah, I agree. A lot of doctors, well, you get a mix. I go into the ER and one of the favorite things that happened once — well, it wasn’t my favorite at the time. But I think it’s quite funny now. As I went in with my mom and they’re like, “Make her go away” and I am talking to them and then they overheard m,e and I was there for my head. I had a ton of headaches and I had some breathing problems that kind of came along when I was going through the rougher part of my post-concussion syndrome.
I remember telling my mom, “Oh my stomach hurts” I know because I probably have been in the hospital for a few hours. I was kind of hungry and then they scanned my stomach and did an ultrasound on my stomach and all these tests and it’s because they overheard me talking to my mom about my stomach and they asked if it was hurting. I was like, “Well yeah but I’m hungry” and it just blew my mind. I was having trouble breathing, my head really hurt and we just ignored that injury if we had something else to focus on.
[0:27:17.6] PB: I’m always laughing because I’ve been there before.
[0:27:20.1] BP: It makes me laugh now. It’s fine.
[0:27:22.5] PB: I’ve been there and it’s like, “Yeah, I can’t swallow.” I couldn’t swallow, well, that’s how I got my brain, I choked. And they did a swallow test. And everybody was worried, everybody was concerned, they all had lab coats on and they’re gowns on and they were going to do this test and they did the test and I passed with flying colors. I can totally swallow on a Thursday. On the previous Sunday I was choking my head off.
So how do you balance that? Well, you can’t pull back time. It depends on the day when our symptoms are our symptoms.
[0:27:57.6] BP: The common question I got was, “Where is your headache?” well, it changed every day so every day you ask, you’re going to get a different answer.
[0:28:05.7] PB: It can happen anywhere, anytime, anyplace.
[0:28:08.5] BP: Yeah, I always got weird looks for that. I’m like, “No, it really is everywhere it changes.”
[0:28:13.9] PB: The cool thing about it is we’re not making this up.
[0:28:16.7] BP: No, not at all. None of this is made up. This is all the truth, which is, I think, really important to be sharing with people. Something that you really like to focus on or talk about a lot is function. Do you have any advice on how to focus or cope with the lack of function that people deal with and then how to get it back? Any advice?
[0:28:37.8] PB: That’s a core question. That is a very good question. I had to have a sense of humor with myself and to this day, I still have issues with buttons, small buttons. All must have zips, all my clothes have zips. And it’s like I’m a four-year-old and you’re the four-year-old but as much as I would try and get function back, think harder, remember, climb that flight of stairs without breathing super hard, not fly off the handle and choke somebody for telling you, “You look fine.”
Accept that sentence for what it is. Accept the fact that I have a symptom that — it takes me four times longer to do a task. And this has been documented somewhere. And it used to frustrate me. Well, frustrating me is going to make more symptoms come to the party. That is just an announcement, “Hey symptoms, come to the party. Paul’s mad. Paul is getting frustrated. Everybody, come on in.” Flinching, muscle spasms, headache, stutter — and so I do a good job. My secondary role is to not get mad, not get angry because that can spiral to anxiety. That can spiral into depression and it is just a matter of, you know what? I cut off my head and I am just not right but I am trying. I am trying to get better and as you try, you take that hill. You take the next step and you’ll see me on Facebook usually to say, “Keep going.” Keep going on your path. Your path is different than mine but we have commonalities all the way through.
The thing that is really true to me and I still coach people today, don’t get mad. Find a happy medium to say, “You know what? I’m going to give myself a break.” I had a traumatic event and I am working myself out of that traumatic event and it’s going to take time. It’s not going to take five minutes, 30 seconds or 15 minutes. With persistence and the love of self will make the difference.
[0:30:44.0] BP: Yeah, I really like that you’re pointing out anger. I was really angry actually, in a lot of things. The health system because, as a teenager, I did not understand why I could not get better. After seeing my parents looked up every single doctor, every treatment and I was willing to try anything. Like if you think it will work for you, I’ll try it too and I was really angry about that and I was really mad about myself, which I had to learn to get over because you can’t get mad at yourself.
I was a kid and I just kept pushing myself. I was ignoring the symptoms. I was still playing or competing in my sport and I had to accept that I couldn’t keep getting mad at myself for something I have done in the past, which had led to the extended symptoms. Because it happened and that’s okay and I’m doing great now. It’s just something that I had to learn that I had to take on kind of one day at a time that you don’t need to be mad about all of this.
It took a long time to not be angry, it is very important because you get mad at yourself, you get mad at your family around you. Because they can annoy you.
[0:31:48.8] PB: You get mad at life, you get mad at the door for conking you on the head that you didn’t mean to and you become mental. You’re still pissed about the fact that your life that you left is no longer in your life. And now you have this big ball of nuts and bolts that don’t match.
[0:32:05.9] BP: You get really angry at things that you can’t do that you could do. That’s really common, I couldn’t remember the page. I just read because I used to be able to read the whole book. I remember it from beginning to end.
[0:32:16.7] PB: Point of interest. I would hang out with my friends in DC before I had oxygen therapy. And they would sing songs from our school. And three bars into it, I was like, “la-la-la-la-la-la” I couldn’t remember the words. And I did the oxygen therapy and all of a sudden — I remember all the words and they’re like, “What did you do?” I was like, “A magic pill, leave it alone.” If they ask again, I’ll tell them what it is but I’ve learned to kind of politely say, “I’ve been working on myself.”
[0:32:48.0] BP: That’s a good way to say it.
[0:32:49.6] PB: Yeah, it’s making a difference. Not work on yourself, it never ends.
[0:32:53.0] BP: No but it never ends, even if you don’t have a brain injury, right? That is something that is a part of your life.
[0:32:59.4] PB: Exactly. It’s just we’ve turned the radio dial a couple of stations over and now we’re learning a new tune.
[0:33:06.9] BP: I like that. So this is a pretty big question too. If the general public to understand one thing, what would it be?
[0:33:14.5] PB: When someone has a concussion or a silent illness like lupus, like multiple sclerosis, which affects the brain. All these affect the brain — and if I can ask the public, just anybody in the public is to give the person a little bit of compassion before they judge them. I don’t have a panic app plate on my vehicle and I am totally entitled to it but I won’t do it because I look fine. And that harsh judgment doesn’t need to be there.
We’ve just talked about, for the last several minutes, how I’m working on myself. I don’t really need somebody to add to that and tell me that I look fine and tell me that I look good. You don’t tell somebody with cancer they look fine. Internally, they’re dying. Well, what’s the difference in brain injury because some of our brain cells have died in the realm of concussion? Be compassionate for a minute. Now, granted a lot of us start to go off the deep end and want attention from our brain injury. I get it but a lot of us are striving to make lunch, a lot of us are striving to make it to our two o’clock nap. A lot of us are striving to make it to the next minute because they think their life is doomed. They think their life is over and it’s not but once we bring our heart into it and put our shoulder to the wheel, then we can find out what we can do and what we can’t do after our brain injury. Don’t let anybody tell you what you can and can’t do.
Try it under safety reasons. Like I said earlier, I had three people that would help govern my world and help me with my decisions. Because I knew that I was not going to make good decisions. I was going to make it off the cuff. I was going to make it off the top of the mark and that — that I realized that some adjustments needed to be in play. To the public, give us a chance. Give us a little bit of wiggle room and don’t stand in the parking lot and shake your finger at us and saying, “You’re just using the system” because most of us are not.
[0:35:20.9] BP: No, I really like that. That was great, thank you so much.
[0:35:24.2] PB: You’re welcome.
[0:35:25.4] BP: No, it’s huge. Understanding. And I like your handicap point. It’s true, I don’t have a handicap sign in my vehicle but I could. I’ve been offered one through doctors. But if I get out of a car, you would have no idea that there’s anything wrong with me at all. I am usually smiling. I jump out of the car some days, other days I look like I fall out of it.
[0:35:47.6] PB: Sometimes I roll out of mine.
[0:35:49.5] BP: Yeah.
[0:35:50.5] PB: If I’m tired, I will roll out of it. It is what it is. We’re all human and if the person that you go to is trying to help you doesn’t know everything about it, how do you expect the next neighbor or the next friend to understand as well. It’s a silent epidemic and it’s global. You live in one country, I live in a totally different country. This is the perfect understanding of how global this is.
[0:36:13.8] BP: Yeah, it is. Is there any small product that you found helped you? I always like to mention my earplugs made a huge difference so I could go out in public, like I could handle the noise and the frequency. Is there anything that you found helped you?
[0:36:27.9] PB: Two things, early on it was earplugs. Earplugs that fit your ear, not the ones that you get at the pharmacy, the one that actually fits. It was worth it to spend, I think it was $100. But that $100 blocked out at least $5,000 worth of noise. And it brought me life so I didn’t have to pay when I went to an outdoor concert. I couldn’t go to an indoor concert, still don’t go to an indoor concert. That’s too much but that helped me find my boundaries and for sleep, I use a supplement called magnesium.
There’s thousands of different magnesium’s. And the person that just heard it says, “I take magnesium. I don’t need that.” This one goes beyond the brain blood barrier. Oh, I got technical there for a second. They’re called magnesium threonate. It’s hard for me to say it because it is hard for me to purse my lips. I had a brain injury, you know? But that in it of itself was a game changer. Because it allowed me to get restful, valuable sleep.
Now, I take two. You can take up to six. Magtein is the brand that I use. There is several different ones but that would be one of the aces in the hole that I would mention at this point. Because I have to find my equilibrium when I sleep or else I wake up and now I’ll go and fall in and it is 12 years later. I’m falling because I am laying down. The body remembers everything. Muscles remember everything and I am waking up at 3:00 in the morning.
“So did you take your Magtein?” No. “Oh, well take your Magtein and go back to sleep.” Now, if it’s in the middle of the night, I only take one. I have a friend of mine that takes six. He’s had four concussions. He was a cage fighter.
[0:38:15.2] BP: I was not a cage fighter and I had over 10, so you never know — how people get their injuries.
[0:38:22.8] PB: It doesn’t matter how you get here. It doesn’t matter who brought you. Just let’s learn about this and move this forward.
[0:38:28.5] BP: Sure. No, those are really helpful things. And I hope people take a look into them and also make sure you ask your doctor before you take anything. Always get good advice.
[0:38:38.0] PB: Yeah, that’s an easy layout.
[0:38:39.7] BP: Before we end today’s episode, is there anything else you would like to add today?
[0:38:43.7] PB: To the survivor that is sitting in their closet listening to this, to the survivor that’s sitting in their room not wanting to come out, there are two people on this podcast that care about you. Because, for me, I was in my closet for a good year. Because that was where nothing could bother me and nothing could over-stimulate me. Reach out to me, reach out to different support groups, brainline.org is a great resource to find a support group in your state if you’re in the United States.
Brainline.org was created with the intention of helping with brain injury, PTSD, acquired brain injury, concussion, whatever you want to call it and they have videos. They have more information than I can give in a lifetime. Because they have been developing it since 2010, if I remember, and they sunk many, many, many loads of money into it. And it is very robust place to go to get a very good understanding not only for the survivor but the survivor family and the extended family.
Brain injury, concussion affects a family. It doesn’t affect just one person and every brain is different, so that’s what I’ll end on. Every brain is different.
[0:40:00.4] BP: Yeah and I love the family, it affects everyone around you and not just yourself. It is important to talk and reach out to them. Thank you so much Paul for joining us today and sharing a bit of your story and all of the work that you were doing to help post-concussion syndrome.
[END OF INTERVIEW]
[0:40:17.0] BP: Has your life been affected by concussions? Join our podcast by getting in touch. Thank you so much for listening to The Post Concussion Podcast and be sure to help us educate the world about the reality of concussion by giving us a share and to learn more, don’t forget to subscribe.
[END]
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