Lifestyle Adjustments with Robby Lefkowitz
Show Notes:
Living with post-concussion syndrome leaves you with the task of finding a new balance. Bella’s guest today is Robby Lefkowitz, a 27-year-old living in the heart of New York City, who works in operations at a flavored water company and has played sports his entire life. His active lifestyle has led to his four known-of-concussions (and probably many more undiagnosed), since 2016. Even though his most recent concussion occurred in May 2022, he has set some awesome upcoming goals like running the New York City marathon in 2023 and helping others recover from this awful injury. As you tune into this week’s episode, you’ll hear from Robby about his concussion history, what it’s like to live with PCS, the lifestyle changes he had to make in order to live his best life. He encourages listeners by saying that it’s important to remember that you can heal, and concussion is not a forever injury!
Key Points From This Episode:
Robby takes listeners back through the history of his four major concussions.
A quick touch on the different types of therapies and treatments he explored.
He shares with us his current living state with PCS.
The different lifestyle changes Robby has had to make.
Something that Robby feels he has to work on.
We talk about the real fear of re-injury.
Robby tells us more about what other things really helped make him feel better.
Why sticking to a strict schedule made a noticeable difference in his life.
A tip from Robby on getting through the healing journey.
Follow Robby on Social Media
Robby's Concussion Awareness page IG: @braininjurycoachlefko
Robby's basketball coaching on IG: @bballcoachlefko
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Follow Post Concussion Inc on Social Media to stay up to date on the podcast
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[INTRO]
[00:00:05] BP: Hi, everyone. I'm your host, Bella Paige. And after suffering from post-concussion syndrome for years, it was time to do something about it. So welcome to the Post Concussion Podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, Concussion Connect. Let's make this 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 concussions and post-concussion syndrome.
[INTERVIEW]
[00:01:15] BP: Welcome to episode number 86 of the Post Concussion Podcast, with myself, Bella Paige, and today's guest, Robby Lefkowitz. Robby is a 27-year-old living in the heart of New York City. He works in operations for a flavored water company and has played sports, mainly basketball, his whole life that have led to his four concussions and probably several more undiagnosed since 2016. Robby is a very active person and is continuing to set goals for the future, while battling chronic migraines from his most recent concussion in May 2022. He helps to run the New York City Marathon in 2023 and help people recover from this awful injury.
Welcome to the show, Robby.
[00:02:00] RL: Thanks for having me.
[00:02:02] BP: So to start, do you want to take us back into a little bit of your concussion experience?
[00:02:08] RL: Yeah, definitely. I've had four notable concussions in my life, probably several more, just being an athlete, playing basketball mainly. In my whole life, I’ve been hit several times. But first one happened in May of 2016 playing basketball. I got hit directly in the back right side of the head by an elbow a long time ago. I actually went out that night and with friends and was partying. The next day, I woke up, and I had just a terrible headache. I was very dizzy. I thought I was just hungover, but it didn't get better for about a week.
So I went to a doctor about a week later, and the doctor said, “Just kind of keep resting and you should feel better in a week or so.” Obviously, that wasn't the case. I was starting a summer internship. I was still in college at the time, though I ended up going to a neurologist a few weeks later when I wasn't better and was trying some different drugs. But really nothing truly helped. I didn't truly know about concussions that whole summer. I was still working the internship, trying to live daily life. I was just having really bad headaches.
I had to go back to college for senior year the fall of 2016. I managed my way through college, kind of fully healed with time over that six months, starting beginning of 2017. I was fully better. Dizziness and migraines went away. But it took a while, and I never really truly focused on it. Just really just over time.
Second concussion happened in May of 2017. Right away, I’m playing basketball again, similar symptoms. This time, I went to a neurologist right away. I was having the same exact symptoms, and they started me on pretty much several different medications. I was trying a new medication almost every single week, and nothing was working. That time, I graduated college. I had to delay my new job that I was starting with Amazon. But that whole summer of 2017 was really just a big mess, taking, like I said, medications. I just graduated college. I wanted to work. I was not hanging out with friends, not playing basketball. I’m not doing what I truly enjoyed.
But I wanted to eventually try to start my job and, like I said, it was with Amazon. I was in a warehouse, and I was put on night shift. So this was an extremely difficult job. I was working all 13-hour shifts, and it was overnight. Even when I was getting off of work, I was barely sleeping, and I did that for about eight months, and that definitely made me a lot worse. Over time, I was dealing with the concussion that I had, my migraines and dizziness. Everything was getting worse throughout those eight months, but I pretty much stay quiet. I never really complained. I was just going to work, doing my job, and going home. I didn't really have a social life after work. I was living in the middle of nowhere. No, my friends weren't around. So that also led symptoms of just kind of being alone.
But flash forward to May of 2018, I had to take a medical leave because at that point, I was just – Everything just got bad, and I knew I needed to make a change here. I couldn't keep living like this. That's when I really started to kind of start my journey here of learning about PCS, post-concussion syndrome and all these different methods to try to treat this. That really put my focus into getting myself better.
I went to vestibular therapy to start. That really helped a lot. It got me back on kind of my feet of exercising, which something that I love to do, and I wasn't doing. It helped a lot with the dizziness, migraines a little bit. I was continuing to see neurologists and different types of therapies, chiropractor, biofeedback, all these different therapies. Something had to work. But the one doctor I did see that really, really helped me was Dr. Collins in Pittsburgh, Pennsylvania, I walked into his office, and he was really the only doctor that said, “I'm going to get you better,” and with confidence and pretty much said, “Follow my plan, and you're going to get better.”
I remember when I saw him in the start of 2019, now a few months off of my job. He put me on a treadmill and said go run, and I really haven't done much physical activity in months, years almost. That's what I love to do. He knew I'd love to do that because I told him I was an athlete. I got injured playing sports. I think I ran about a mile super slow, but I didn't feel terrible, and it kind of gave me the confidence to say, “Okay, I can try these things.” I didn't feel great, but it didn't feel terrible. So that really got me back to kind of getting my life back.
The year 2019, I got a new job. Amazon just wasn't – It wasn't the right job for me, working in a warehouse overnight. So I got a new job in New York City, where I currently live now. I was almost, I would say, fully healed again in summer of 2019, and everything was going pretty well for the next several months. Then obviously, COVID hit, which that was a whole another just a worldwide issue in itself. I was feeling okay, in terms of migraine and concussions. But I moved back home to New Jersey and my usual schedule of going to the gym and working.
Obviously, everything got ruined. I wasn't going into an office. There were no gyms. So that was a challenge in itself. I was feeling okay, but just a whole different life-changing, obviously, for the whole world. But one thing that I did get out of it was since the gyms were closed, we weren't going into an office, I took out running at that time because I wasn't playing basketball anymore, just due to the fear of getting hurt and everything. But I took up running and started to run. That kept me in shape, and I did the best I could with battling COVID.
Flash forward to – I moved back into New York kind of once COVID was settling down in 2021 now, so almost a full year ago, two years ago. Yeah, I moved back. I got hit in the head. I was back to playing basketball. Just can't take me away, but I got a small hit, and I got very nervous. I get nervous if I get hit even small. But I fully recovered from that in about two to three weeks, as a normal concussion would. But that was just a little scare. So I'd like to add it to my four notable concussions.
Then the one I'm dealing with now, I got hit again of May this year, so about six months ago. I ran. So talking about running, I ran a half marathon the week before I got hit, and I was potentially maybe trying to run a full marathon. Who knows? That is a goal for me and looking towards the future. But it was crazy that I ran a half marathon. The next week, I get hit, total life-changing. That’s currently what I'm dealing with today. It's set me back similar to that second concussion, 2017, where I'm dealing with daily migraines. Even today, I'm not feeling 100% today. I don't feel great at all, honestly. But I've been trying my best to get better.
I went back to vestibular therapy, which definitely helped bring down dizziness and balance issues. But the one thing that I still am dealing with today is the headache pain. I'm trying, again, different types of therapies. I’m trying not to take any medications. I've tried a few. There's actually some new medications out there from five years ago, and I was trying it. So I’ve tried them. Nothing has seemed to help. But I'm not giving up, and I started a page to, hopefully, help others, and coming on this podcast, hopefully listening to people’s stories. I'm always trying to learn. Yeah, that's kind of my story.
[00:10:18] BP: Yeah. It is quite the story, and thank you for walking us through it all. Thank you for talking, even though you have a headache. It is hard, and I get that feeling where you're just kind of like, “I need to keep living, despite the fact that I have headaches all the time.” Because when you stop living, that's when all the mental health stuff likes to kick in in full strength. So I definitely get that.
I also get the medication thing. I know I always encourage here, like try it. And if it helps, it's totally worth it. But a lot of them, I find the problem is that they're not curing but not healing your brain. They're just like something to help manage it. So a lot of the time, it can be worth it so that you can keep continuing on with your daily life. But they don't always have something that's like it's not vestibular therapy. You're not actually rehabbing anything. It's more of just a cover up, which is still sometimes very needed. So I definitely recommend trying them, but talk to your physicians first.
I also get your can’t take you away. You tried basketball again. I did that with riding horses for years. Like I would get hurt, and then I'd be like, “Oh, maybe I shouldn't have.” Then I just wouldn't blame the sport, and I'd be like, “Oh, this could have happened anywhere.” As always, I like to remind my parents, when they get kind of upset about me doing things like riding a dirt bike, I always remind them that I could get hurt every time I get in the vehicle. I try to always like convince myself that's also part of it. It's like you can get hurt anywhere, so I might as well do the things I love.
But it is really hard to accept maybe not doing things, changing it up, being a little safer. But it's something that, I don't know, I struggle with a lot. I know a lot other people do. And you kind of mentioned lifestyle changes. So what kind of lifestyle changes have you made, other than the COVID ones, because that was kind of everyone?
[00:12:16] RL: Yeah. One of the big things that you just said, it's tough to take away the things that we love, riding horses for you, basketball for me. But one of the things that I did, which I forgot to mention, during that healing time, so I took the medical leave. I wasn't completely not working, so I couldn't play basketball. But I love basketball, and I was good at it. I took on coaching. So I started the coaching basketball page, which I shared with you, and it got pretty big. I was decently well-known in my area in New Jersey. So I started training kids, and I actually started coaching out a high school team, helping out as an assistant, a really good high school team, one of the top five in New Jersey.
So it transitioned me from playing basketball to coaching basketball, as you mentioned. It was a lot safer. I wasn't playing not – There’s no body contact of coaching. But it still is stressful, coaching and training. You're still getting involved. You're doing the movements with them, and you're helping out. But that was a big lifestyle change for me, and I'm still doing it today. I'm not playing basketball anymore. But I still am coaching, and I run a camp in New York City. It keeps me involved with my biggest passion in life, which is sports and basketball being number one.
Of course, I would much rather be playing with my friends and playing on teams while doing the coaching. But right now, that's on pause. Maybe one day, we'll get back to it. But that's not on the top of my list of priorities. But that's definitely been a big lifestyle change for me is just trying to stay involved with the passions that I love in different ways.
Another lifestyle change for me is I live in New York City, so the social scene here is huge. A lot of my friendships aren't based off of going out with friends and grabbing drinks and going out to loud bars. That has been a big change, at least these past six months. Since I've been dealing with my most recent injury, I can't do that right now. It's just not enjoyable being in a loud place with large crowds and then drinking alcohol. I've also cut out because a few times I've had a few drinks, it just makes me feel worse. I describe this as almost I'm already feeling hungover. I'm not going to drink and make myself even more hungover.
But that is something I'm still trying to deal with. I’m still hanging out with friends in a more quieter setting and watching sports and just trying to do different things. Walking and exercising is great for me to an extent. I'm still dealing with that. I’m trying to balance what I can do versus what I want to do, and it’s still a struggle. But I do the best I can and still trying to enjoy my life.
[00:15:02] BP: I really like that you mentioned the balance part because that is like the biggest part is trying to find a balance with all of this. Because like you said, what I would like to do, what I can do, trying to be somewhere in the middle, and I love that you started coaching and all that. It is really hard, of course, to go from being a player to a coach. But it is wonderful to still be a part of the sport.
I know for a while I coached and just like helped students get better. It was just a wonderful feeling, and I really like the fact that you didn't close the door. Like maybe one day you will play again, but you don't have to close it. Maybe just for now, you step away. But at least one day, you can always go back, and things could change. You never know. As we learn from concussions, things can change all the time, unexpectedly. The change with friends is tough. I know for myself, I would go out and leave early all the time. Or I would go out and regret it. Or I would go out, and then like I'd have to go sit outside. I don't smoke or anything. But I would go sit outside with friends that did, just so I could get like fresh air and quietness from a very busy loud bar. They would be like, “Why are you out here?” I’ll be like, “Well, I need to give myself a break, if you would like me to stay.”
So it does take time, and it takes time for your friends to understand too because it’s not like they can see it. Then there's moments where you're like you seem all good. Then there's days where you're not. I know it's quite a roller coaster for friends too because they're like, “Well, yesterday, you were okay.” Or, “You came out last weekend. Why can't you come out this weekend?” It takes time to really have friendships that are willing to kind of stick around through that and really understand what you're going through. But it takes time. It takes time to break down the wall, and it takes a lot of vulnerability to be like, “I'm actually not okay,” and to say that out loud, for sure.
[00:17:04] RL: Yeah. That's something that I know I need to work on. You mentioned some good points there, leaving early or going outside. I struggle with that. Because once I'm there, I don't want to leave. I don't like to – I don't want people saying, “Oh, we can't do this because of Robby,” or anything like that. So I always tell them, “You guys do whatever you want. I'm just going to do what I can and handle myself. Don't worry about me.” But you brought up some good points there, something that I am sure a lot of people need to work on because we don't want to live like this. We just want to feel good. That's the goal.
[00:17:38] BP: Oh, yeah. These things take time. Like they are not overnight. Oh, I should do this. So then we talked about that a lot, how mindset and all these things are habit forming. You have to form the habits, and they don't form overnight. But we are going to take a quick break, and next we're going to talk a little bit about the fear of being reinjured and kind of what's helped Robby a little bit more. But with that, we'll be back.
[BREAK]
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[INTERVIEW RESUMED]
[00:19:18] BP: Welcome back to the Post Concussion Podcast, with myself, Bella Paige, and today's guest, Robby Lefkowitz. So I wanted to talk a little bit about the fear of being re-injured, just because I think it's something a lot of people deal with. I myself have dealt with it. Now, I don't really stress about it. But there was a few moments where if someone hit me in the head, even just like something simple, because I'm super accident-prone, like hitting my head on the car door, door frame, walking into things, even light enough where I know I didn't get a concussion or anything. I would kind of panic because almost the fear of more symptoms was worse than the pain itself.
So how have you dealt with that? Have you come with anything that kind of helps get over that fear?
[00:20:07] RL: Yeah. That's definitely something that I struggle with, and I'm sure, like you said, a lot of people do. The easiest answer to that is, of course, try not to think about it. But that's definitely difficult to do, just living like this. But I feel like kind of have to be almost on guard a lot of the times. Of course, you can't control everything. Me living in New York City, there's large crowds, and people are throwing things everywhere almost. It's a crazy city to live in. But I try my best when I'm outside, and I'm doing stuff. Just to always kind of look at my surroundings and try to put myself in the best place where I'm not going to get hit, and I’m not going to get reentered. But, of course, it's a scary feeling to live with, and a lot of people don't understand that. If someone gets too close to you, you could ask them, “Hey, back off a little.” It's definitely difficult.
But again, as we were saying before, we want to live our lives, and we don't want to stay inside all day and do nothing. So my best advice is just go out there and do stuff. Of course, if you get hit, and similar to you, I mentioned that very concussion where I got hit playing basketball, but I healed very quickly. It was a very small hit. Another one, when I was coaching, one of the kids threw a basketball at my head. I started freaking out, but I couldn't really control those. It’s just accidents. The best advice is if you try not to think about it and make yourself go crazy, then, hopefully, it won't be a fear. Your fear of being injured will not be too bad.
But it's tough. It’s definitely something that I'm trying to work on. But again, I try to do everything if I’m feeling okay, and I just go from there.
[00:21:56] BP: Yeah. I think it's a good like mindset to have to – You try and then see where it goes. Because I think that's the biggest thing is like just putting yourself out there and kind of risking it. I know that sounds kind of bad. That is part of it. I found it was a little while. There was about a year where I kind of got afraid of doing anything. I was afraid to do anything that I loved, and I'm big into sports, big adrenaline junkie. Like I love my dirt bikes now, snowboarding, sledding on snow wheels, like all these types of things. I love doing them. So there was a whole year where I did nothing, and I didn't even ride horses. I was just – I can't do anything. I can't get hurt.
But it was probably one of the most miserable years of my life, and that was probably one of the things for me where I had to learn how to find activities that were safe and didn't stress me out. But I spent a lot of time on that. Like what can I do where the risk is low, but I'm still enjoying myself? So I started with activities like archery. It was something I could do. Swimming was something I could do. Hiking was something I could do. So I started with those and then slowly picked back up into all of my adrenaline-type activities. Once I felt comfortable doing those, I was like, “Okay. Well, if I can do these and not stress out because the risk is really low, then maybe now I can try doing things, where I know I'm really going to enjoy myself or I'm going to feel like I love life again.”
That took a lot of time. Like that was a few-year process to go through. But I also spent years very, very ill. So it took time. But that re-injury fear, when you do get re-injured, I always like to remind myself that, okay, I got hurt again. But we did get better last time because, otherwise, we would still be suffering just as much from the beginning when it all started. So if I could get better last time, I can get better again. Hopefully, I can get better even faster because I know a lot more now, like things. Like you said, vestibular therapy.
When I go back to what I knew when I started 10 years ago, what there even was as offers for different therapies and things, there wasn't much. So it's great to see now that I know that if I get hurt, I can be really proactive about everything, which is a good feeling. But it doesn't mean I want to get hurt. I really don't. So you mentioned vestibular therapy. Is there anything else that has kind of helped you feel better?
[00:24:27] RL: Yeah, definitely. So that trip that I took to Dr. Collins, it’s a long trip in Pittsburgh, Pennsylvania, and I would recommend him to anyone dealing with migraines, and you are an athlete. He definitely treats athletes. He doesn't – The schedule that he puts you on is not easy. It's a lot of working out and exercises, so you got to be willing. Something about this injury, it's not going to heal itself. You really need to focus on. As you mentioned, it's different for everyone. Vestibular therapy helped me, but it might not help someone else potentially. Medication could help someone else that didn't help me. So a lot of trial and error with this injury, and everyone is different. Something that helped me may not help someone else.
But I mean, I definitely preach, and I truly believe that helped me is sticking to a strict schedule. So as I mentioned, when I was working for Amazon, that night shift, I wasn't sleeping. On my off days, I would try to switch back to a day shift schedule. I was so off, and it made me so much worse. It's a brain injury, so you really need to retrain your brain. I believe sticking to that strict schedule. So I was waking up the same time every day, sleeping at the same time, eating my meals, working out the same time every day.
Obviously, I wasn't working at that time. So it's been more difficult right now, as I'm still working a full-time job, so a pretty demanding job. It's tough to kind of stick to that strict schedule of what I did four years ago, but I'm trying my best. I go to sleep and eat my meals and working out different times. But it's also okay to – Sometimes, we make ourselves go crazy. So if you miss a weekend, you go away and go off your schedule. It's not the worst thing in the world. You just get right back into it. But I know an issue for me is that is an issue, where I have a few good days to do something a little too much on the weekends, and it can affect me for the next almost like a week or even longer, and I feel like I take steps back.
But I try to tell myself and remember. If you're sticking to a schedule, you're doing the things that gets you better. If it's chiropractor or anything, keep doing it and stick to that schedule, and you'll feel. If any, if something helps you even a little bit, keep doing it. Don't quit. You really can get better because people heal. It’s not a forever injury. You just got to keep doing things that help you.
[00:27:01] BP: I really liked that you mentioned the like don't get mad at yourself kind of factor when things don't always go to plan. I really liked that because being able to give yourself grace through all this is huge because we all know that symptoms change, triggers change, and all these things. So you can be on a strict schedule, and then you have a really bad day, and that's okay.
It took me a long time to be able to accept that. Even since Post Concussion Inc. and the podcast and everything has started, it took me a little while to be like, “You know what? Today is not a workday.” You really want to. You have all these things to do, but a workday will be moved to a Saturday and that's okay. Luckily, I have that flexibility. But it took me a long time to be able to be like, “No, we're not working today. We're going to cancel meetings and things,” because I always felt like so obligated to get everything done.
Learning not to feel that way is really helpful, and it kind of eases a lot of stress in life when you kind of go, “You know, we're just going to kind of go with the flow a little bit more.” But you have shared a lot today. Is there anything else you would like to add before ending today's episode?
[00:28:08] RL: Yeah. I wanted to add just one more piece. Getting better is really trying to stay positive. It's easier said than done. But I know I feel better when I'm feeling positive. It’s something to look forward to, just having someone you can talk to. I have a few good friends. My mom is definitely number one person that I go to. She's the best. She's helped me find a lot of these therapies, and I can talk to her about anything. I have a great girlfriend as well, that also is helping me through what I'm going through right now.
Yeah, I really love this podcast. I started my Instagram page to, hopefully, get to a point where I can help others down the road. There's a lot of misinformation out there, and I’m trying to raise awareness. I spent a lot of time kind of hiding behind the appearance that I look good. I run. I work out. I try to go out. It's kind of just time for people to understand what I'm going through and what a lot of people are going through. We spend a lot of energy on trying to appear normal, and it's a waste of our time and energy and almost makes us feel worse.
So I'm working on this every day. It's not easy. I'm still not at the place where I want to be. But it is great when people set goals for themselves. I have my goal to run the marathon in 2023. I hope that helps me get through a lot of this. But, yeah, I've enjoyed my time. Thanks for speaking to me, and this is an awesome podcast.
[00:29:38] BP: Yeah. Well, thank you, and I really agree. It can really help. Kind of just enjoying life and finding things to look forward to can really help. So thank you so much for joining us today and sharing some of your story.
[00:29:53] RL: Thank you.
[OUTRO]
[00:29:57] BP: Need more than just this podcast? Be sure to check out our website, postconcussioninc.com, to see how we can help you in your post-concussion life. From a support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
[END]
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