INTRO: You're listening to Seize Your Adventure, the podcast that shares stories of adventure and outdoor living, with epilepsy.
KYLE (recorded at Summit): Let's get started. I just want to say a couple of things. I’m Kyle from Outdoor Mindset. Really, more than anything, I believe being outdoors and being with tight community has an amazing impact on quality of life, for everyone in the world, specifically for people affected by neurological challenges. And we just experience it, we experience the fun that we have together when we get outside together. We focus on quality of life, maintaining that way of life that we love in the face of a crazy challenge that we all experience. So, thank you. Hope to see you guys more and more.
[Cheers and clapping]
FRAN (in studio): Hello, everyone, Fran Turauskis here again. In 2010, thirteen individuals got together in a hut in the Rocky Mountains of Colorado. The group shared a passion for the outdoors, an unyielding enthusiasm for life and they also shared a link to different neurological challenges: brain aneurysms, epilepsy, stroke. These hardships could easily have led to a more subdued mindset. The 13 people could have opted for a quieter, indoor life, but instead they were inspired by one of the friends whose diagnosis of a brain tumor encouraged him to use the outdoors as a way to cope and a way to connect with others. That friend was Kyle Martin, the voice you heard at the start of this episode and this meeting of 13 people was the start of the organization Outdoor Mindset. Fast forward seven years to 2017 and I was scraping through the hundreds of adventure communities on the Internet, searching for other people with epilepsy to talk to about starting my website. And out of all of the websites, all of the podcasts, all of the blog's about the great outdoors, Outdoor Mindset stood out as a kindred organization. Throughout this episode, you'll be hearing from different people with different connections to neurological challenge. And you'll also get to hear a bit more about what happened when I was flown to Colorado for the Outdoor Mindset Summer Summit back in August. I wanted to start off by letting you hear the origins of the organization from the head honchos themselves. Kyle Martin who is the Founder and Jake Quigley, the Executive Director, you might recognize from Episode Eight and Nine of the podcast earlier this year. Now, I interviewed Kyle and Jake separately, but you can tell that this is a story they have been asked about a lot over the years because their answers blended into each other so perfectly. And you will also hear a contribution from Kyle's dog Cutty, so I hope you're not too startled by the bark when it happens.
JAKE (over): Outdoor Mindset started back in 2010 and since that time it has grown into a large community and outdoor focused community for people affected by neurological challenges. Back when we came up with the idea, it was started by Kyle Martin, who is our current Board President and Founder who was diagnosed with a brain tumor in 2009.
[Music continues and slowly fades under KYLE speaking]
KYLE: You know, I can-- I can target a couple of really specific scenarios and experiences that I had that brought it to mind for me. And one of those specifically is, you know, when I had first learned-- and we had talked a little bit earlier before dinner about being diagnosed with this massive name of like a brain tumor. And words like ‘epilepsy’ and ‘multiple sclerosis’ and, you know, things like that are getting tossed out, left and right. For me, I went right to quality of life, and I didn't necessarily go to span of life--
JAKE: --and he was given all the resources that the physicians and neurologists could give him to help him deal with this new diagnosis of an inoperable brain tumor that, thankfully, was benign and not malignant. But he went down this path of researching some of these support resources, and none of them really resonated with him.
KYLE: You know, I remember waking up in the middle of the night and it was probably 2 or 3 a.m. and it just really did kind of come to me that that was such a massive revelation, that quality of life was so impactful for me. And I found so much quality of life in being outdoors and adventuring through mountain biking or snowboarding or whatever that might be, in being with people and sharing those experiences. And it came at a time that I was also visiting a lot of doctors--
JAKE: --and we also at that time realized that we were seeing the same doctors--
KYLE: --and so with this revelation of-- like, quality of life was huge for me and that came in parallel with realizing that there were so many people in this world that were in the same situation as I was in at that moment, and they were getting faced with this massive diagnosis and had no idea it was out there. And so for me, I was just curious. I was curious, like, what kind of impact could be made if we really focused on the concept of using nature in the outdoors and using community and connections with people to focus on quality of life for all of us that are effective by neurological challenges. And so that was a really big moment for me. You've talked to Jake. I was awake the whole night and at 8 a.m. I called Jake and I said, “Hey, I want to talk to you about something”.
JAKE: And during a cup of coffee where he was explaining his story, I was taking it all in--
KYLE: --then it just turned into a group of folks with all of our individual stories coming together to create something that, hopefully, has had some positive impact on people and that people can really sit well with, and that resonates with people so--
JAKE: --so it was very interesting turn of events that occurred within a very short conversation that this all began. And several of Kyle's other friends who had connections to different neurological challenges rallied around him as well. And that was where the mission was formed. That's where the organization was formed.
KYLE: That's the kind of the genesis of it. But you know, the story is bigger than mine and The story is a lot of people who are connected to OM right now or who are going to be connected in the future hopefully...
[CUTTY dog barks]
KYLE: What do you think Cutty?
FRAN (to CUTTY): What do you think?
KYLE: What was that?
KALYN: I don’t know, he got startled by something.
FRAN: Oh is it a moose!
KYLE: Is it a moose..?
FRAN (in studio over music): The latest report from the World Health Organization (WHO) shows that up to one billion people worldwide are affected by neurological disorders. This means that around 1 in 6 people have conditions such as epilepsy, stroke, Parkinsons, MS, migraines, brain injuries and many more. Outdoor Mindset welcomes anyone that has been affected by a neurological challenge.Outdoor mindset welcomes anyone that has been affected by a neurological challenge. There are common difficulties and barriers to enjoying the outdoors with or neurological conditions on. Members can talk about these difficulties and help one another to overcome them. One of the main ways they can do this is through the regional meet up groups, which are run by ambassadors.
JEANIE S: I organize schedule and, of course, my favorite part. Participate in activities with other outdoor mindset members.
FRAN: This is Jeannie Sroka, who is the Outdoor Mindset ambassador for the Grand Rapids, Michigan area.
JEANIE S: Sometimes these activities are as simple as just an easy hike, which occasionally is as simple as a walk through a park. This past summer, we participated in a 5K Color Run through the city of Grand Rapids.
FRAN: Whilst these activities may be simple, the benefits could be huge. There are studies that show exercise can slow the progression of diseases like Parkinson's, and exercise in the outdoors is particularly good for us. The increase in vitamin D we get from simply being outside can help with MS symptoms, for instance. But motivating ourselves to get outside can be tricky, which is where meet-up groups come in handy.
JEANIE S: I had on my own, I'd already experienced enormous benefits being immersed in nature, and I wanted to connect with other people that had the same desire to be active outdoors.
FRAN: The fact that everyone knows that the other members have neurological conditions removes the worry and admin usually involved in explaining your condition to new people all the time.
JEANIE S: I was actually diagnosed with a neurological disorder at least seven years before I even discovered outdoor mindset. But I had been looking for some type of group or an agency that recognized and focused on the value of nature and getting outdoors while also understanding the challenges that come with doing that while living with a neurological disorder.
FRAN: Having people around who get it could be very important. From memory problems, to speech difficulty, poor balance and loss of motor functions, the symptoms of neurological disorders can be difficult to explain or even convey to people without the condition. In fact, neurology is so complicated, even doctors admit they don't really know what's happening most of the time. Brain research has historically been based on when things are obviously wrong, such as when there is a traumatic injury and it is the case that many people, including some people in Outdoor Mindset, actually have a neurological condition caused by participating in the action sports that they love.
KALYN: Brain injuries were very common. Some people would pass away from them.
FRAN: This is Kalyn Lepre. As Kyle’s significant other, she is an integral part of the Outdoor Mindset community, but Kalyn also has her own experience of a neurological problem. For 10 years she was actually a competitive snowboarder, and during that time she took some nasty falls.
KALYN: Yeah, I had three concussions. The first one, I was coming out of a transition into the air and then down and there was a chunk of the half pipe wall that was missing. The nose of my board went into that hole, which flung me face-down into the bottom of the half pipe, so it kind of, like, catapulted me down and I blacked out there. And then the events following that were just strange behavior. Like, I slide-- slipped my way down to the bottom of the half pipe and then unstrapped. But I don't have any, like, recollection of that part, and I apparently walked down. I went inside of my locker, like, climbed inside of my locker and, yeah, just had weird behavior and then started to be really affected by the light. So I crawled under a table and then kept vomiting.
FRAN: It is a slightly funny vision: trying to climb into a locker and hide under a table. But you can recognise these as symptoms of a brain that is failing to work properly. And it's not surprising to hear that they can be lasting problems with this kind of injury.
KALYN: That was the first and then I had a couple more after that similar kind of behavior and weird things, but knew what to do, by that point-- but didn't really understand, like, the side effects of that, you know? I just thought your brain got a jump, and then you healed. I didn't really understand the long term effects of it until probably, like, four years ago, and there was more research coming out.
FRAN: This is, unfortunately, something we hear a lot when talking about neurological conditions. Just like with epilepsy, traumatic brain injury in sports, TBI, has faced challenges with research, but also the stigma of talking about it. Despite the fact that brain injuries have always been a risk with action sports, it is only due to the relatively recent high profile cases that the long term effects are being acknowledged. In 2010 a snowboarder called Kevin Pearce suffered a nearly fatal brain injury whilst training for the Winter Olympics. His story was documented and transformed into a film called The Crash Reel, which brought light to the experience of TBI. This was one of the key stories that has led to more research and more conversation around the subject.
KALYN: I think having the knowledge of how those, you know, kind of traumatic moments can affect me long term helped me understand a lot of my own behavior. Walking through depression and not really understanding why. Yeah, I'm just really grateful that it's becoming more well known and that athletes are considering their brain health with more of a serious matter and learning to protect themselves better. And, yeah, just taking it more seriously because it is a big deal. And I'm just happy people are talking about it. Yeah, I got a lot of help from the people who have come out in these past few years and talked about their experience, for sure. And it's helped make sense of the past 10 years that I've experienced symptoms of that. So, yeah.
FRAN (to KALYN): You still do snowboarding for fun, don't you?
KALYN: I am so grateful that I can, yeah. I love snowboarding. I have had a love/hate relationship with it a little bit, because you can really give it your all. But I'm really grateful for all the things that I've put my body through that I still can and I still love it, and I'm just grateful that I can get into the backcountry every once in a while.
FRAN: It's this draw back to action sports and being in nature that is at the heart of Outdoor Mindset. For many members, the organization resonates and offers a reassurance that it is not, somehow, reckless to follow this mindset with neurological challenges, but rather it can be therapeutic to us. And there is also growing research to support this. One study has shown that spending 90 minutes of your day outside in a wooded area decreases the activity in that part of your brain typically associated with depression. Other studies have shown that taking small adventures like a new walk in to work helps keep brain cells active. In fact, doctors in Scotland have even begun to prescribe nature as medication in some circumstances. Basically, humans like adventure and being outside,
JEANIE Q: I think it is really about utilizing the outdoors and what it gives us.
FRAN: This is a different Jeannie. Jake's wife, in fact, who you might remember played a part in Jake's story back in Episode Eight, and you also might remember, is a doctor.
JEANIE Q: You know, research shows that it contributes to emotional and mental health and I fully subscribed to that and also I think it's one of just, you know, like getting outdoors, you know, bathing in the forest. What-- whatever, you know, gets you out there, whether it's adventure or it's just, you know, listening to music in a park. I think, to me that that is the outdoor mindset.
FRAN: This is true not just for those of us with neurological conditions. One of the best things about Outdoor Mindset is that it is a space not just for the people with the condition, but also the friends and family who support those with the condition as well. Jeanie told me how being part of the community has helped her as a supporter.
JEANIE Q: For me to see, actually, Jake connect with other people with similar diagnoses, similar challenges. That was something that I can't give him. So, for Outdoor Mindset to provide that for him, that makes me happy. And then I think for me as a supporter it's-- it is nice to connect with other people who are in, you know, your similar shoes. It's fun to see people and their partners come together to activities. And for me to connect with other people as well, you know. Whether it's over challenges with memory or, you know, medication changes or, you know, events. Any of those things. It's nice to have some sort of commonality and then obviously do it in a fun environment. Like, you know, getting outdoors and hiking and climbing and doing whatever floats your boat.
FRAN: And this community is continued between meet-ups and across the world via the Facebook group and social media. Here’s Jeanie Sroka again.
JEANIE S: Something that I think is important and just really shouldn't be overlooked is the online community that exists within Outdoor Mindset. It's great to connect with other people who have the same goals pertaining to being physically active, particularly outdoors, in connecting with nature, even in a very peaceful, calm way, while understanding that there may be accommodations, you know, necessary to acquire those benefits based on the individual's health and their specific neurological disorder. But this-- that is where we really do see the strength of our members, and we can draw upon the strength for ourselves. And we can also be examples for others.
FRAN: The online community shares stories every week about their weekly adventures, from listening to music in the park to hiking the Himalayas. And some of these stories come about from the opportunities provided by Outdoor Mindset, particularly through the adventure scholarship program. Scholarships allow members to come together in a group and decide upon something they would all like to do together, and Outdoor Mindset supports them financially. This program is to encourage and support their members through opportunities that they may not be able to achieve by themselves, with a specific focus on the idea of sharing the stories afterwards. And it was through one of these scholarships that I was offered the money to fly to Colorado for the Summer Summit. I was able to meet the community, the people that I have spoken to online and have them show me how they live the outdoor mindset.
[Guitar music - Lonely Lake by Kev Rowe]
FRAN (over music): The evening I flew into Denver, the sky was filled with lightning, and I made my way across the city to the suburbs where I was staying. I drank several bottles of water to combat the dehydration caused by being at such a high altitude, and I collapsed into my bed seven hours behind UK time. I spent a couple of days exploring the city of Denver. I met up with an Outdoor Mindset Ambassador, Lisa. And after getting used to being a mile above sea level, I made my way by bus further up into the mountains themselves to meet up with Kyle, Kalyn, Jake and Jeannie. When I arrived at Kyle and Kalyn’s mountain lodge, there was a packet of crisps on the table.
They were bloated up like a balloon about to burst, and I marvelled at the fact that this was essentially what was happening to my body. Being at higher altitudes affects the brain and body of people who live at sea level. We know that some people are prone to altitude sickness, and I had no way of knowing if that would be me. And because I have no specific triggers for my seizures, I had no way of knowing the effects of high altitude on my epilepsy, or if there would be any. It is something that has not been researched or talked about at all. So it was reassuring for me to have people around who understood both the altitude and the epilepsy. Jake and Kyle gave me some specific advice to lower the risks of me getting altitude sickness. Jeannie emphasized the need to drink a lot of water, and Kalyn encouraged me to keep my electrolytes topped up. And in the days leading up to the Summer Summit, I was able to spend the time between 3000 and 4000 meters in the Rocky Mountains, which is considered very high altitude. Jeannie and Kyle took me on a bike ride in the mountains. I saw an eagle whilst we all kayaked on the reservoir in Dillon and I walked at a higher elevation than I ever have before. Hiking at high altitude was a challenge I was slightly concerned I would not manage this year. But thanks to the adventure scholarship from Outdoor Mindset, I not only managed it, but I did it at the Summer Summit, surrounded by people with other neurological challenges who understood.
[Recording from the Summer Summit hike: we can hear multiple people talking and hiking and laughing. We hear a few snippets:]
HIKING FRAN: --that perfect mix of you can still get outside without being miserable--
HIKING WOMAN: --so I started experimenting--
HIKING MAN: --I don't know-- the hail doesn't sting your ears--
FRAN (narration over): Far below through the clear mountain air, there was a great view of the town of Dillon. We were not far into the mountains. The walk was not long, but it was massive to me.
HIKING JEANIE: within seconds of being--
HIKING WOMAN: --always an adventure--
HIKING MAN: --we hike, we bike, we ski and we ride. Where better to do it than Colorado?
[Hiking sounds fade]
FRAN (in studio): If you are affected by any kind of neurological challenge, you can become a member of Outdoor Mindset. It's free, and if you head to the website outdoormindset.org, or search for them on Facebook or Instagram, you can just sign up. As a registered nonprofit, you can also donate to Outdoor Mindset or raise money for them through Facebook and if you are in the U.S. you can do all of your shopping via Amazon Smile and set up Outdoor Mindset as your charity. In that way, they will get a portion of the money you spend at no extra cost to you. The information about that is all in the shownotes for you.
Whilst we are talking about money, I would like to just remind you that there are a couple of ways you can show your support for Seize Your Adventure. So I do, of course, have some merchandise on the website. If you haven't got the Seize Your Adventure enamel mug yet, do go ahead and get one of those soon. I am running low on them and they would make the perfect Christmas present for the adventurer in your life. I have a lot more off the journal's left, so if you are wanting to write your own adventure stories, do go and grab one of those ones. They are perfect for taking in a backpack when you go somewhere.
Music for today's episode came from Joshua Empire on freesound.org and Kevin Rowe on Soundcloud.
As always, this episode is going to close with one of the guests. After the Summer Summit, I was excited to know more about the future of Outdoor Mindset. So I asked Jake. And you get to hear how much of a pro Jake is, because he nails it in one. So I'll leave you with that one, and until next time Safe Adventures everyone.
FRAN (to JAKE): Now that you have done your successful Summer Summit, what is going to be next for Outdoor Mindset?
JAKE: What's next for Outdoor Mindset is a continuation of that connectivity. We saw a lot-- I think you saw a lot of connections that were made throughout your time here and whether it was the conversations that were had or the fun that people were having doing different activities together. It's that organic growth. We've always been a small, organic growing organization, and it's based on those times when people get to be with each other and share things, and you saw the positive energy that results from that. And that is something, to me, that is the most special thing. So we're going to continue pushing our meet-up programs and trying to get members in areas, give them the opportunity to experience that once and wherever that's happened in any areas we've had established meet-ups is that's the hook. That's what people really get value from and how that makes that impact on their quality of life and there and their outlook a little bit more positive.
FRAN (to JAKE): Perfect.
JAKE: Done. I'm done!