Latest / Understanding Your Concussion / Episode 17: The Essence of a Concussion Recovery Process: SUPPORT!
Transcript
- Jana: Hi, I am Jana Kapp. I know the concussion recovery journey deeply, ⁓ both personally ⁓ and professionally. Join me in understanding your concussion, ⁓ where I empower you in navigating the complexities of a concussion recovery journey by sharing the science of what is going on behind the scenes, the stories of why we feel the way we feel, and how we can work with our brain to find our way back to feeling and functioning like ourselves again. Hello everyone, welcome back to another episode of Understanding Your Concussion. I'm really grateful that you are here continuing to listen and learn and understand all the different components that come with recovering from a concussion. Today I wanted to talk about support. Support during a concussion recovery. And I was reminded of this last week. After I was invited yet again to speak at our local concussion support group that is run through our community services society. And they run it about two to three times a year. And typically I am the guest speaker who kicks off the eight-week session, and I'm always honored to be the one to kick off the sessions. I think having gone through this injury myself and having the professional side understanding really allows me to take more of a bird's eye view approach when it comes to recovering from a concussion. So I always like to start the participants off in understanding the bigger picture of when it comes to recovering from a concussion, especially persistent symptoms. Typically, the clientele that are showing up at the support groups are individuals who have been living with concussion symptoms for three to six months easily, or multiple concussions, and have recently sustained another one. And, you know, it's interesting always joining this group from this side, because my trajectory to get to this point, has evolved throughout my own personal journey. So I personally was a participant of a concussion support group. I believe I was a participant in one of the very first concussion support groups that ever existed in Canada. So it wasn't really until 2008 when concussions really started to hit that mainstream media. After Sidney Crosby, a professional hockey player who played for the Boston Bruins, I believe it was, sustained a concussion and stopped playing hockey at the professional level and took his concussion and his brain injury seriously. And it was this huge phenomenon that a professional player would stop at the peak and the prime of their career. To prioritize their injured brain. And that's when concussions really started to take more of a presence, not only in the media, but also in healthcare. And that was around the time I sustained my first injury. My second injury I sustained in 2011, Boxing Day, skiing, fell, cracked my helmet. That injury really was a significant injury for my brain. However, I wasn't having those typical concussion symptoms. so I didn't think I had sustained a concussion from both my first concussion in 2008 and then from my second concussion in 2011. And then again I sustained my third concussion in 2014. When I had bumped my head on a table after participating in a week-long course. And that was the one that was the least significant of a mechanism of injury, but the most significant in bringing out all of my concussion symptoms and really took a toll on my ability to continue to participate in life while living with these injuries. And so that's when. Everything in my life stopped. And I really then had to prioritize my health and my injury in order to work my way back to feeling and functioning like myself again. And it was around 2015 when I realized that there really wasn't anyone around me who understood what I was going through. I had a bit of an understanding because I had set out on this journey and had been doing research. And because it was becoming more of a hot topic in the medical world, I had taken some courses or workshops to start to understand how I could start to recover. And I live in a mountain town. People are very active here. We ski, we bike. We hike. There's people who are, you know, doing Ironmans and triathlons and really high-level athletes who maybe it's not their profession or their career, but it is a part of their lifestyle. And so I live in this area where concussions is a high prevalence. Yes, because people do partake in high-risk sports, however. Concussion is not isolated to only sports-related injuries. I have treated many individuals who are not active for concussions, whether that's because they were in a motor vehicle accident or in an incident that did lead to them getting hit in the head or experiencing whiplash. Not specifically because they were participating in a sport. So I just want to make that caveat because sometimes we can get caught up in the fact that I don't have a concussion because I wasn't participating in a sport. And that's kind of making me laugh in my head right now because I'm realizing I was participating in a sport and didn't realize that I sustained concussions. So it can go both ways. concussions are not isolated to sport injuries. However, there are certain sports that do have a higher prevalence. Even though I was living in a town where people were sustaining concussions, we weren't all connecting together because concussions can be very isolating. I do remember. my husband would say, you know, so-and-so sustained a concussion and they're going through a similar experience as you, And so It started to dawn on me that there are a bunch of us all here in this area struggling, yet we're not connecting with one another. And so I thought maybe it's time to start a support group. And I went to my boss of the clinic that I was connected to at the time and said, What do you think about a concussion support group? And he said, Well, funny enough that you say that because An occupational therapist who works in the corridor just reached out to me to talk about starting a concussion support group. Let me put you in contact with her. And so I connected with the occupational therapist, and she had created this program a support group, but a support group that was led by someone who had. Experience in living with concussion. And someone who has a healthcare background. Because these two things come hand in hand when you're an individual who's looking for support. First of all, you want someone who's going to give you up-to-date and accurate information. Typically, a healthcare professional who is passionate about concussions. Is going to have that updated information. So you want someone who's in the know so that they're going to give you the best evidence-based information that is available at the time. Two, you need someone who understands what it's like to live this injury. Because it has become very clear to me over the past two decades of living and working with this injury is that if you haven't Experienced living with a concussion, there is a level of understanding that is not there. It is very hard to describe what it's like to live with a concussion, all of the different aspects that come along with that injury, and how much it impacts all the different areas of our lives. It's unlike any other injury I've treated. That is from a physiotherapy lens, that muscular, skeletal, or orthopedic injury. Because sure, it changes and adapts your life if you hurt your shoulder, you hurt your wrist, you hurt your knee, you hurt your ankle, you hurt your back. And there will be similarities that overlap. But those injuries are isolated to that one body part, whereas your brain runs everything that you do. It is in communication with all the systems that are important for you to access, functioning and feeling like yourself. And you can't just prop your brain up on a shelf for an hour or two. to distract yourself from that injury. It is always there. So, having someone who's going to be a part of a concussion support group truly needs to know what it's like to live with this injury. So, if you're looking for concussion support groups in that area, ensure that you're looking for those two aspects. A healthcare professional is involved, or your guest speakers are healthcare professionals and two, that there is someone facilitating that group that knows what it's like to live that injury because they are going to be able to not only enhance the discussion that you're having, but truly relate to you in a way that an individual who has never sustained a concussion will not be able to. So the concussion support group in our area has evolved over time. And when I connected with the occupational therapist, in that first session that we believe was the first Canadian support group for concussion, I was a participant. She had experience of living with concussion. And she was an occupational therapist. She was a healthcare professional. And had worked with individuals who had sustained brain injuries on that spectrum. And it really was a huge game changer for me in joining that group. Not professionally, but personally. It personally, really changed how I related to living with a concussion because for so long. I had spent so in the beginning of this podcast, I talked about my personal injuries. I sustained one in 2008. I sustained one in 2010 into 2011, I think it was actually. And then again in 2014. Those are three concussions that I experienced over a handful of years, almost a decade, without any intervention. I think maybe during my second concussion, I did go to physiotherapies for my neck because I knew as a physiotherapist, whiplash, neck, that would be important. But I didn't have any intervention for vision, for vestibular, for autonomics health. Balance, nothing. And I was experiencing dizziness, nausea, headaches, decreased concentration, extreme fatigue, but neurofatigue, not just I'm tired, like proper concussion fatigue, because there's a difference. I really at that time could only go for a walk. For fifteen minutes before I would feel nauseous and dizzy. And I had no clue as to why I was feeling the way I felt. And so each concussion that I experienced added another layer of complexity until 2014 when I really was forced to stop and focus and pay attention on what was going on with me. And I made that promise to myself. That I was going to figure out how to move forward and return to feeling and functioning like myself again, which sent me on a journey that I wasn't, I I had no plan for. I just kind of followed one footstep in front of the other and found my way through it all one step after another. And part of that was the concussion support group. I really Found it so enlightening that people were using similar language to me to describe what they were feeling. Being in a room with people who were able to describe what I was feeling, experiencing, and living made me feel so much. Comfort. I didn't feel alone anymore. I felt that I felt validated that the experiences I were having were happening for a reason because it wasn't just specifically me only. It was other people too who had similar experiences in the fact that they sustained a concussion. For a very long time there was this little kind of questioning in the back of my head going, are you sure you're not making this up? Maybe you're like I I know that in the mental health world, people don't always love to use this word, but I did feel like a crazy person. I was not myself by any means. And I felt like a crazy version of myself. And joining the concussion support group is what really made me realize I was not crazy at all. I had a concussion. And starting to get information about the injury gave me that pathway to start to walk down. After that session wound up, I had made a lot of changes in my recovery. And I would say that that was a catalyst for me in actually beginning my concussion recovery process, heading down that path to finding my way to feeling and functioning like myself again. The following year, I was invited to facilitate with the occupational therapist in that concussion support group. So that we could work together. In sharing our experiences and our professional knowledge. After a few sessions that of us running the concussion support group, we had other things that were going on in our lives that started to take us away from that. And we needed to pause. There's that word again, pause. If you listen to last week's podcast, you'll know what I'm talking about. But we had to take a pause in being able to provide the support group. A few years later, the Community Services Society took it over and started to provide another concussion support group in this area. And that's how eventually I was invited to speak. And so that's kind of been the trajectory of me a part of the concussion support group here in this area. starting from what was like unique and new and unheard of. to something that now is all over the world because we do recognize the importance of support when you are going through any challenging experience. It's not concussion alone. There are support groups for all different types of injuries and ailments and experiences that we live through life because truly our nature as human beings is to be within social connection. And learning more and more about the autonomic nervous system and the nervous system in general, one of the best ways to regulate a nervous system is to co-regulate. So if someone is feeling dysregulated, is overwhelmed with emotion. The best thing you can do to help them become regulated again is to regulate yourself beside them and allow them to tap into your nervous system to help them find calm again. And I believe that that is why support and being around people who truly understand what it's like to live what you're living. is important because We can help each other find that level of calm when we're walking through the path of uncertainty. And I think that that's why the occupational therapist wanted to ensure it wasn't just a healthcare professional facilitating the group, but it was also someone who understood the challenges of living with a concussion because they Could keep themselves regulated in that space, knowing that that is common to this injury, and there can be some kind of, for lack of a better word, answer or outcome for what you're seeking. And when that nervous system can stay calm in that room. it can help everyone else settle into that same level of calm or regulation as well. If you are feeling a lack of support in your journey, A, this is one of the reasons I started this podcast, is for people who might not have access to a lot of healthcare professionals, to the financial resources, to people who understand. But it is always worth it to. Look in your area to see if someone has already started a support group. I know from being online as well, there are online support groups that people offer, especially in the concussion space. A lot are free where you can tap into. connecting with people who are on a familiar path. And I would highly encourage you to do so because we learn from each other. We can regulate each other, we can learn from each other. And this is where you're gonna start to find some of those pieces of your puzzle from other people who have been in a similar situation. look in your local community, look online, and keep listening to the podcast for that element of support because it is an essential aspect during this recovery journey. So after I did my talk, and it was it was a really great conversation that we had I was highlighting those four lessons that I highlighted earlier in the podcast for you about understanding what's going on behind the scenes with your injured brain, understanding your symptoms and how to manage your symptoms, understanding rest and recovery, and understanding exercise. So that was the basis of my chat. But I had also, you know, chats go in various different directions, and people had questions. And one of the questions that someone had asked had said. When you talk about support, what is it that people do find challenging? And I kind of already mentioned some of these, but I'm gonna kind of highlight them as well. That one thing is always financial support. Often a lot of us are either off work completely or in some kind of reduced work capacity because of. Where we're at in our recovery process. That can lead to a lot of stress when we don't have the same level of finances coming in that we require in order to keep a roof over our head, to keep food on our table, to put gas in a car. And life, the way things have been unfolding lately, just keeps getting more and more expensive. So that's one area that can be very challenging when navigating a concussion recovery. I know for myself, I had to put a lot of of my financial resources into my recovery process. I had to pay for treatments. I had to pay for rehab. And it was hard to not be working and to be putting out all this money. Some people like myself do have the support of family members to provide some financial aid. But not all people do. Even if you do have that financial support some way or another, it can easily be used up very quickly. And then you feel like you're at a loss again. And so that's the other thing I would encourage you to do is to look in your community for any financial subsidies, whether that's towards physiotherapy or medical support, whether that's A gym pass for mental health, there are resources out there that not specifically always for concussion, but depending on, like I know in our community, depending on the your income, there are different levels of financial support that you can receive. and so I really encourage people. To look for those things. I had to as well. It wasn't something I wanted to do. I know it can bring up a lot of shame for people in asking for help and asking for support, especially when it comes to a financial scenario. But and this topic did come up during the concussion support group. And what I said, because this is what I needed to hear when I was going through it myself. Is that your health is your wealth. If you don't have your health at a level where you can feel and function at your best, you're going to struggle. And so at times, it might be important to allow yourself to seek out that financial aid, to ask for financial support, or look into. Being creative around the finances that you do have of how you can put them to use so that you can support your recovery process. There will always be an element of rehab when recovering from a concussion. You will need some form of treatment or therapy to help you get your brain functioning again. Everyone is on a spectrum when it comes to that. And we're all individuals when it comes to that, but there will always be an element of that. So if you're feeling doubt, shame, discomfort, uncertainty, just remind yourself that your health is your wealth. Because once you can get to a point, you might not get symptom-free or completely healed before you're back at work. But if you can get to a point where you are back at work and now you have that financial stress off your plate, you will have more capacity to deal with the other layers that you need to go through to get back to feeling and functioning like yourself again. So when you're going through your recovery process, prioritize your return to work. especially if finances are an issue, because once you can get that under your belt and you do have that income coming back in, it can be a game changer for you to move forward. So that's one aspect of support. The other aspect is that familial or relationship support. I live in this mountain town, but my family is a five-hour plane ride away. I didn't have a lot of close friends around me at the time. I didn't have my family members. It was me and my partner. And that's a lot to put on a relationship, and that's a lot to put on one person. when you're used to functioning together in a particular way, whether that's as a daughter, as a wife, as a sister, as a friend. Whatever that is for you. And it changes the relationship because now this person is not able to function like themselves. It can lead to stress between those individuals or within the family. And so it is important to seek out people who do understand what you're going through so that you can connect with those people and not have to put all of your stresses of the injury into your relationships. And I think that this ties into a the next piece. The next piece being supporting yourself. Often we're not thinking clearly when we're going through this injury. And we tend to prioritize the people around us and make sure that they're okay first before we prioritize ourselves. Especially as a female. And this was something I really had to learn and continue to learn is that I had to ensure that I was supporting myself through this journey and I was protecting my recovery process so that I would still have the energy, the capacity, and the ability to be somewhat symptom-limited or free to be able to function as best as myself as I could. For the people around me. But then sometimes that meant prioritizing me to prioritize them. Sounds a little convoluted, but when you start to play around with this, you will start to understand what it means. Because when you prioritize yourself, you will show up as your best self for those around you when they need you. And it'll give permission for people to support themselves. and show up as their best self for you when you need them. And that's how relationships ideally work. this was a learning process because after so many years of not feeling and functioning like myself, questioning my sanity, doubting whether I what I was truly going through, I really lost a lot of trust in myself. I didn't know how to rely on myself anymore. And because Symptoms often would get in the way. It was hard to trust myself, not knowing when or if I'd be able to participate in something or for how long. And so that led to uncertainty in trusting myself. So one of the ways that I had to learn to support myself and trust myself again was by tapping into my intuition. Because your intuition never steers you wrong. It may not make sense, but it never steers you wrong. And our intuition typically isn't designed to be in coming from our head, from our thoughts, from our thinking mind. It typically comes more from our bodies. We can feel when it feels like a no compared to a yes. Sometimes we even make noises like uh-uh. And that is a clear sign that that is a no. some of us have to feel our way through. Right? We have to. Allow ourselves to navigate our emotions before we get into that clarity of, that's the right thing for me. So by tuning into our intuition, and I do feel we all have our own unique intuition of ways of connecting with it. Is one of those things that I had to start to rely on to support myself and learn trust back in myself again. Because my thinking brain wasn't very online. I wasn't always thinking logically or with sound reason. And like I said earlier, sometimes our intuition doesn't make sense. It is not logical. but when we allow ourselves to trust those feelings or that gut response or those sounds, then it is taking us in the direction that is meant for us and that we can trust. And so that's what I started to experiment and play around with of well, my gut's telling me to do this, even though logically I have no money for that. It makes no sense. I've never done this before. I don't I don't know if this is something, this is a good idea or not, but I'm feeling really pulled in this direction. Okay, I'm gonna try it. And it never steered me wrong. So navigating this journey, you do require support. And there's various different levels or types of support that you can access, whether that's financial, whether that's through a support group, or whether that's starting to tune into your intuition and learning to retrust yourself again. But support is a key aspect of this journey. And so if anything, I hope you do continue to listen to the podcast to keep gaining a level of support in your journey that will help you continue to move forward one step at a time as the path appears and you find your way back to feeling and functioning like yourself again. So thank you for joining me today. And I hope that you have found this episode to be supportive. And don't forget, I'm here to support you as well. Feel free to email me if you have any questions. Follow me on Instagram, Connect with me. Connect with others who are going through this journey so that you can feel less alone and more understood. Thank you for joining me in understanding your concussion. I hope that you are leaving this episode feeling empowered in understanding what is going on behind the scenes of your injury, why you feel the way you feel, and how to begin to take action to move forward in your unique healing journey. Interested in checking out understanding your concussion course? Head to concussion healingspace.com or the link is in the show notes. You can purchase lesson one through four, reminder lesson one is free. If you're interested in connecting with me for mentorship and support, one on one consultations are available online or join the Concussion Support Club where you get access to all four courses and weekly drop in support club options