The Power of Support Groups | Bo & Pam
Show Notes:
Ever felt lost and alone after a trauma? This episode brings to light the transformative power of support groups for survivors of post concussion syndrome. Join us for an enlightening conversation with our esteemed guests, Bo and Pam, who share their personal journey from solitude to strength, and how support groups played a pivotal role in their recovery.
We delve into the crucial role such groups play in the lives of brain injury survivors, and how they serve as a gateway to vital resources. Learn about the exploration of varied types of support groups, from traditional to open-format, and the importance of finding one that accommodates your needs. So, tune in, and let's shine a light on this crucial lifeline for concussion survivors.
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Please note episode transcriptions may not be 100% accurate!
Bella
Host
00:03
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. Welcome to episode number 120 of the Post Concussion Podcast with myself, Bella Paige and today's guests Bo Nanna and repeat guest Pam Treischel.
01:17
Bo was raised in the Midwestern United States. Bo enlisted in the Marine Corps after high school. While serving in Hawaii, he was selected for a scholarship program at the University of Washington. Then, after graduation in 1978, served as an infantry officer in California and Okinawa, japan. Leaving active duty. He worked in sales, marketing and training in the pharmaceutical and biotech industries, as well as health related non-profit organizations. He was an avid sailor, bicyclist, scoop instructor and coast guard licensed master, seriously injured in a 2008 bicycling accident. He admits doing everything 100% wrong for four years until he discovered a TBI support group. Now he facilitates a weekly online group from home on the Olympic Peninsula of Washington with his wife, a talented baker, and their very bossy Scottish terrier. They look forward to the Kraken returning the Stanley Cup to Seattle. Pam spent most of her professional career in credit unions, call center management and consulting. When not working, she sought adventures in the Pacific Northwest of Washington state, which led to her passion of scuba diving and underwater photography.
02:27
In November of 2020, Pam sustained a head injury while gearing up to go scuba diving. When she came to, she immediately went to tell her dive buddy what had occurred, but amnesia said in and her memory of the incident was erased. Suffering from scary out of the blue symptoms, she tried to blindly navigate the medical system. Meanwhile, she sustained a second impact without realizing it, had an unnecessary biopsy and received several incorrect diagnosis along the way. Six months later, she slowly regained her memory and she was told it was just a concussion, she'd be fine and could resume diving again in a few weeks. But that was not the case and eventually her mental health deteriorated and she intuitively knew there was something still wrong and took it upon herself to dig further. Fast forward, pam discovered post concussion Inc the podcast and concussion connect, and realized she was not alone. She still is learning to deal with chronic conditions because of these injuries and would be lost without the many advocates within her various support groups. They've been an integral part of her journey this far. Welcome Pam and Bo. Thank you.
03:29
Bella. So today we're going to focus on something that I've actually wanted to talk about for a while now but never really thought about how extensively we should talk about it until Pam mentioned that it's something we should really talk about, and that's support groups. I run support groups and you know they're really important and sometimes we don't realize how important they are for survivors. But what I want to start with is the benefits of support groups and why survivors should even join them. Pam, do you want to tell us, or Bo, a little bit about why someone should join a support group?
Pam
Guest
04:04
Sure, a lot of times on this journey you're very lost and you feel very alone and you may not realize it. But joining a group of people like-minded with similar challenges, similar objectives, feelings, experiences, it really helps you feel included, because part of this journey is very lonely and isolating and part of the bad is almost a necessity as you heal. So having a support group really gives you a family, a community. You know, because, like for me, my scuba diving I had this huge community and can't scuba dive, so this was kind of a really nice replacement and very pleasantly surprised too in just how helpful it was. I think one of the biggest benefits is the resources that you get from a group that have been through a lot of what maybe you're just starting to go through. I know with your podcast and Cushion Connect I gained a ton of different resources with the Clatch group. That both facilitates. It was incredible I've gotten better medical advice from some of the individuals there than I have from actual doctors, so it's been very beneficial from that perspective.
Bo
Guest
05:28
Well said, pam. I think you really hit on some keys. I didn't find a support group until four years after my accident and those four years were pretty miserable. I did almost everything wrong as far as taking care of my brain and, like a lot of people, denial and resistance and anger, but when I found I stumbled into a support group just I mean this serendipitous I honestly started to cry when I heard other people talking about things that I had been going through. In our support group we have people who say that our little band is basically their families. A lot of families become alienated. A lot of friends become alienated because you can't go out and go dancing and partying with your old pals, and so the support group becomes a second not even a secondary family, kind of a primary, a different primary family.
Bella
Host
06:32
I really love what both of you said. Pam, you talked about the loneliness and I think that is huge. It's something I dealt with for a really long time. I kind of felt like I was the only person on the planet going through what I was going through, and I think our brains also do that to ourselves. Like when you get come mentally ill and deal with things on top of illness, you just feel like how could anybody else be going through this? Because where are they Like? Where are these people?
06:57
And I really liked your idea of replacement or a substitution for, like your diving group, because sometimes we need somewhere where we can talk about things that are going on in our lives and sometimes that's really hard with friends that aren't ill and friends that don't get it, because you don't want to be the only person talking about how sick you are.
07:15
I am very lucky to have a few friends that I can sit and talk about me being ill for an hour and they know so much about it that they know how to respond enough. Sometimes they Google things when we talk, but that's okay, but that's really rare and I didn't have that right away. That took me a long time to find people like that, where you go into a support group and it's filled with people who understand you. It's filled with people who can just talk about everything that you have been thinking about and you don't even realize that there's other people that get it just as much as you want them to. You know, bo, you mentioned something really important that I want to talk about next, and that's the challenges of finding support groups or even thinking of joining. You said four years I never joined one until I started one.
Bo
Guest
08:04
Too good a way to do it.
Bella
Host
08:06
So I actually spent probably six months joining different support groups before I started mine and we're going to talk about that later but that was the first time I ever was like. I was like I want to start one, but like I didn't even think of, like oh, there's so many out there that I should have been in these all this time talking with others, and that would have really helped me throughout my journey. But I really want to talk about the challenges of finding support groups, because we say support group Great, where do you start? And so, pam, do you want to begin with that?
Pam
Guest
08:36
Yeah, I think that's a huge issue. So I think I was two years. Well, I was about a year and a half in to my journey but nobody ever told me about support groups. It was me doing the research, me listening to your podcast, actually learning about Concussion Connect, and that was kind of my first exposure to support groups. I was still worth trying to work at the time.
09:01
It's a challenge sometimes to find the right time fit because the time slot wasn't working great for me. I tried a couple others, you know, and some of them are set up differently but nobody tells you. I mean, you get nothing from at least I got nothing from medical community. It wasn't until I hit a wall in an emotional bad spot and I reached out to brain injury Alliance of Washington and Amy she was the one that recommended Bo's group so kind of reached out to him and I knew I found the right group.
09:37
Number one he was a scuba diver and here I was facing this, you know, maybe never being able to dive again. So I thought, wow, he'd kind of understand what that was about. And then, secondly, very first meeting, he's like, oh, what was I talking about? And what you know, what's that word? And I'm like, oh, my goodness, that's me in a nutshell. So it just felt. It felt like I was in the right spot and I feel comfortable saying that because we've had other people see within the group. But yeah, it's just nobody there's not enough places that can tell you about a support group. It just it's kind of there's a void, just like there was a void for me finding out about post concussions, you know syndrome, or persistent concussions symptoms whatever you want to call it, I have no preference.
Bella
Host
10:28
I have gotten attacked a few times for using the wrong term, but I don't think it matters. Whatever you want to call your illness, you can call it. If you want to call it a messed up, ever concussion or my brain hurts syndrome, whatever.
Pam
Guest
10:42
It's all the same.
Bella
Host
10:44
It's all the same thing. So it's challenging and, like you said, you've reached out to your brain injury alliance. That can be a really great way to find a support group is reaching out through local brain injury societies. Every single state in the USA does have a brain injury society. I know this is a fact. Canada is also the same. There's one, there's multiple in certain provinces, not sure about other countries, but one of the benefits is that a lot of these groups are virtual, so you can certainly join at any time.
11:15
I know when you mentioned the times, that's a big thing because I've struggled because I have people globally like over in Europe, people in Australia, people in the States in different time zones all saying let's join support group and I'm like, okay. So trying to find times that works for everyone is always a challenge, but it is something that can be beneficial about joining a different time zone support group. Maybe night works better for you if you do still work, and things like that. So that is really something wonderful. There's also in-person support groups, but we're going to talk about the structure of support groups after. But do you find challenges with finding a support group? Because I find a lot of people. They don't really know where to look. I think that is definitely a first step is usually brain injury societies. But some people I think that's a refer from concussions feel like they're not the right fit because they think stroke, they think traumatic brain injury. But that's often not the case. Absolutely, bill.
Bo
Guest
12:12
I think the first step- at least for me, was coming to the realization that I wasn't going to be able to do this alone and things were not good and I needed help. And so for I would say for at least the first two years, I was well, I can beat this, I'm tough, I can overcome. So the first step for me was just realizing that my brain is not an enemy I can overwhelm. I'm going to need some help and for the first 50 years of my life I would have, I mean, support groups. Those are for other people who need help, not me. I think getting over that hurdle was my first step and it was proven to be a really dumb thought the instant I walked into the support group and was welcomed and was understood and just evaporated and I'm like these are my people, I need to be here. But finding it, I mean it was. It was happenstance really, because when somebody goes to an emergency room with a concussion, I don't think they know about support groups. Even my neurologist never mentioned support groups. I would say nine times out of ten it's that referral via the way Pam came or somebody just cools support group themselves. I wish there were better way. I wish we could get our message out there that these are available, and then you know the other considerations you guys talked about are accurate too. Sometimes. Sometimes there's not a right fit.
13:55
I was on one support group. The time thing is critical too. I was on the support group two or three months ago. A woman joined the group it was a TBI support group but she had I can't remember she had some totally unrelated but serious kidney disease and she was just she was looking for help and this happened to be at an hour. She was on the East Coast and we were on the West Coast and she said I just need help. So we kind of dropped everything and talked to her and so, yeah, the time. There's so many critical factors.
14:30
But my message would be there are support groups out there. They're just probably one that will fit. And we have people come in and spend an hour or so or even 10 or 20 minutes and leave. That's okay. I mean, virtual is easy. But we have people who come back regularly every week. The only thing as a facilitator of a support group I will say we now have people in multiple time zones. So it's the challenge there. When somebody asks me what time is it, my first thought goes to well, where are you?
Bella
Host
15:07
Yeah for sure. Those are all really important points and I do really want to get into the structure of support groups and the different types of support groups there are and how that can make a different fit for everyone, but we will talk about that after the break. Did you want to create awareness about concussions? You can check out our entire clothing line through the link in the episode description or go to our website, postconcussioninccom and click awareness merch from t-shirts, sweaters, tank tops and multiple designs, including the podcast. Nothing mild about a concussion and more. Make sure to pause this episode right now and order yours before you forget, just like I would Welcome back to the Post Concussion Podcast with myself, Bella Paige and today's guests Pam and Bo.
16:25
and so what I really wanted to talk about, is the structure. It's something that I kind of studied, I guess, before I started. Mine is the structure, because there's different ways to run a support group, so I'm going to let you two take that on and kind of talk about, you know, the different types of support groups that are there. Maybe some different structures there are that exist as well.
Pam
Guest
16:49
I know one of the things I like about our current support group is that you kind of get the best of both worlds. We have a weekly meeting. It's more the family event, you know, where we talk and share and advise one another, ask each other how are you doing? What's going on this week for you, anyone need help? And then we also have a monthly meeting where we invite guests like yourself and there's more of a theme and a topic and it's more of a presentation to the group. So I kind of like that.
17:23
You know, like you mentioned, kind of checking into different ones to really as Bo put it find your people and what really resonates with you. There's a lot of different things and you know there's some big support groups out there where you know you kind of just listen to people's stories because they're so large, and then there's other ones that are really small and you can get kind of a one-on-one with somebody. So yeah, there's a lot of different structure and you've got to kind of figure out what's going to work best for you and what you truly enjoy the two.
Bo
Guest
18:01
Well, the way I was introduced to support groups was the kind of the I guess now I call it the traditional support group, where there's a subject matter or a presenter, you know, oftentimes it was maybe an occupational therapist or someone who was familiar with brain injury, talking about getting back into the routine of living, and for several years that was kind of what my support group experience was, and then with a Zoom it became a little harder to do that, but it also opened up the opportunities for, you know, those little more wide open. The one of the inspiration the group we have is I describe it as free for all. Somebody who's having a problem that day we can talk about that, and that kind of was inspired by. I've attended some support groups with NAMI, the National Alliance for Mental Illness, I think, and they have very good support groups specifically for mental illness of all shapes and sizes and causes. And frankly, we have a lot of people in the brain injury side of things, in concussion side of things, who can benefit by some of the NAMI support groups.
19:22
But anyway, they begin their groups usually by saying is anybody in crisis? And so that's kind of what we try to do, is, you know, just check in first thing, and how is everybody doing? One week somebody will have an upcoming social security hearing that they need to attend, so we talk them through that. This week we have one of our wonderful members going through some therapy and we're going to actually have a little impromptu group to send some mojo her way so we can at least make her smile. There's a support group that will fit almost everybody, and if you don't find that, that bill of dibs starts your own.
Bella
Host
20:05
Yeah, pretty much, and I agree there is so many different types. Like the presenter type was the type that wasn't for me it's great to be a part of, like you said, like you have it not all the time, but I wanted to talk about all my problems and what I was going through and I wanted to get help and where that's a little bit of a different setup. I know you'll learn a lot, but for me that was like listening to a podcast episode. If I wanted to listen to a professional talk about a bunch of things, then I could just listen to a podcast where I wanted a group, where, like you said, the open format is really nice. I used to have subjects for all my support groups until someone's like can we just talk? And I'm like sure we start ours with talking about our weeks because we meet every week and everyone's become quite close, so kind of like what they're going through. We work through things from moving, job loss symptoms, finding new jobs what kind of jobs, I could even try to find therapists, all those types of things. So we talk about everything, which I think is really important. We talk about relationships too. That's always a really big one with partners, of survivors, because there's a lot of challenges there. So I like that too.
21:17
And sometimes a huge group is what you want, because maybe you don't want to talk that much, maybe you're just not comfortable with it. So maybe sitting and listening to a huge group is perfect, because you just want to sit there and listen and maybe type a few things into a chat and you'll still get some wonderful resources from listening to others and that can be really beneficial as well. And of course, there's in-person support groups as well that a lot of the brain injury societies do put on. I've just never been to any of them. But, like Thao mentioned earlier, one of the benefits of the virtual support groups is you can just cut out. I tell people to come late, I tell people to come for half the time. You can come for what you need. Maybe you only have half an hour that day, maybe a half an hour on a screen is enough, and so you can just cut out and disappear. So some of those benefits are really really nice and you can just click, go, join in.
22:09
And sometimes the topics are nice because you can kind of know what to expect. Maybe you can prepare what you want to ask about. So those can be nice too, but it just shows that it's kind of like the recommendation that I have for finding a talk therapist. It's the same recommendation that I have for support groups. Try them out. You might not like one, but try another.
22:28
Same thing with talk therapists you talk to a therapist and they rub you the wrong way. Find another one, because there will be one that you can connect with. But when you're ill and all that, sometimes it takes a bit of time and that's okay. And, like Bo said, if you hate it, just close your screen. Yeah, like nobody will be insulted, it's okay. You really know that you need help and you will find it where you need it. I think this is really important conversation. To talk about support groups, kind of open up a little bit more about that, it is okay. You know there is sometimes the stigma of needing help. I think that's really common, more for men than women, but it is very common. And so is there anything else you too would like to add before we end today's episode?
Pam
Guest
23:12
Well, I will touch on that denial part. I will touch on that denial part. And Bo called me on it. Bo definitely called me on it a couple of times, but even before I joined it was like I don't need this. It's just that I've always been the one to fix things and I couldn't fix this, I couldn't make this better, and it was really accepting and letting go of that, and you do really have to get beyond yourself sometimes in the way things were. So, in addition, I just would like to say thank you for everything you've done and put out there. You've been a huge resource to me on my journey and I absolutely appreciate it. Everything from you know, from the physical elements to the mental side of it, you've just provided a lot of great resources. So thank you.
Bo
Guest
24:06
Absolutely yeah. And one thing, Bella, you touched on a little bit the knowledge in the education part. I still almost everybody. I've learned everything I know about brain injury from people I've encountered in support groups. My neurologist said, yeah, you've got a brain injury. And I said, well, what does that mean? And he said, well, it is what it is. But everything subsequent to that, everything I've learned about myself, about my brain, about how it works, how it doesn't work, has come from others and talking and listening to others going through the same stuff, and I will echo what what Van says Concussion Connect is just awesome. I go through and listen to your past podcasts and look up the subject, and I'm a hockey fan so I listened to all the hockey, all the sports guys. It's a great resource and I thank you as well.
Bella
Host
25:05
Yeah, I want to thank you both so much for joining us today and sharing your experience with support groups. Absolutely, thank you for having me. Need more than just this podcast. Be sure to check out our website postconcussioninccom 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.
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