Episode Transcript
I was fortunate enough to do this incredible week long river trip. That was also a writing workshop. And I didn't really know what I was getting into, but it was transformative. And part of that right, was the river trip. And then the connection you build with the other participants as I was doing it, I started thinking like clinically and research wise, why aren't we doing this for our patients?
Our programs really work to give our participants the strength and confidence and network through supportive peer-to-peer relationships to help them thrive in their daily lives. And the outdoor adventure aspect of it is really just the backdrop. It's really just the lens and the environment in which this magic takes place, but the magic is all really among the human to human connection that's created.
The uniqueness of these activities that people are doing that can help with changing, perceived capabilities, learning to refine problem solving skills and communication skills. And, you know, we talk about that in the therapy room, in the treatment room, and I try to encourage patients to then go out into their lives and practice these things. But there's something about actually really having this opportunity to trial these things that I think is even more valuable than what we can do in the traditional therapy.
So First Descents definitely kind of elevated me and jumpstarted me into a much, much better place physically and mentally. One of the most amazing experiences to kind of move to a new stage of like the diagnosis and not necessarily move on, but like move with it into like a whole different energy and space and outlook on everything.
Welcome to the find empathy podcast, where we discuss the interaction between health and emotions. My name is Dr. Meghan Beier, a clinical psychologist, specializing in chronic illness and disability.
This is the final episode of our planned multiple sclerosis series. I wanted to end with a unique activity and intervention that is outside of the typical psychotherapy office. This is an activity that can be beneficial standing alone, or as a resource that you provide to your patients to implement test out and solidify the skills that they are learning in mental health treatment.
We will be talking about an outdoors adventure program called First Descents. First Descents, currently host programs for people with a diagnosis of cancer, multiple sclerosis. They have programs for medical providers and in the near future may start to offer programs for family members and support partners.
Dr. Tracy Herring a research and clinical psychologist from University of Washington will share throughout the episode, the research that supports these kind of activities for all medical populations and more specifically, multiple sclerosis as a special note, First Descents is completely free. So this is a wonderful resource for your patients.
Check them out and encourage your patients to check them out as well. Thank you so much for listening and let's get started.
So today we're gonna talk about adventure and wilderness programs for people with multiple sclerosis. And more specifically about the program. First descents. We have three experts here today, the vice president of programs for First Descents, Mackenzie McGrath, an MS researcher with particular interest in wilderness adventures, Dr.
Tracy Herring and both a medical professional and participant in the First Descents program. Dr. Jennifer Lee, I'm gonna start by asking each of you to give a little bit more background about who you are and how you got connected with first descents, as well as you know, your background and interest in multiple sclerosis.
So I'm gonna start with Dr. Lee or Jennifer. I think you might go by a different name. So can you share a little bit about the name that you were given through First Descents, as well as a little bit about yourself and your journey with multiple sclerosis? Sure.
So part of the First Descents program, when we arrived the first day for our adventure, like week long program, is that, um, we come up with nicknames.
So we essentially like shed our former selves and, um, we're kind of trans transported into a whole other world for the week. And so everyone comes up with a nickname that's related to something that's important to them. And actually at the time I was having a lot of trouble, um, trying to come up with my nickname.
I think Mackenzie actually nicknamed me. Um, we were talking about things that I did. And so that I'm a radiation oncologist. I run ultra marathons and so forth and she's like, oh, ultra, that makes sense. Like you should just be ultra. And so for the week I was known as. I actually still have the sticker on my travel bag from the week that says ultra on it.
So, um, it's a good reminder all the time. So I'm a physician, I'm a radiation oncologist based in Texas and originally from New York. And then a little bit about my MS. Journey is that it's probably been going on for a long time as, as it is with most people with MS. And, uh, we just, I kind of didn't know, and there were weird things all the time that I would see and just chalked up to either playing college sports or, you know, just over training or things like that.
And, and then after I graduated university, I was living overseas. So I was kind of moving between different countries and different doctors. And, um, so no one was able to kind of put all the pieces together. And so it wasn't until I started my, uh, residency down in Texas that. I had run my first ultra marathon actually, and I had placed and I was feeling fantastic.
And then a week later, um, I couldn't see out of, um, out of one of my eyes and then. From there, it kind of progressed really quickly. Uh, mainly because I worked in the hospital, I was a physician. And also because I kind of knew as I was going through the diagnosis, exactly what was happening, you know, because as they would send me for tests, I was like, oh, this is where they're thinking.
And, um, and you know, and like after I had my MRI, which actually was in the middle of one of my like shifts at the hospital, I just like came in at, in the middle, took a little nap in the MRI machine and then popped up and then looked at it and immediately knew what was, what was happening. Um, and then after that, you know, things progressed pretty swiftly from, from that day.
For me, luckily my team of doctors was fantastic and they also moved pretty quickly for me. But the unfortunate part of my circumstances was that being a physician was kind of a double edged sword because I immediately, after seeing that MRI went back to work and the physician I was working with that day told me.
That I couldn't tell anyone because this might affect my career. I might not be able to, to work again. People would judge me and not trust my medical decision making. And so from that moment, it was like this black cloud over everything on top of the traumatic diagnosis and like transition period. And so, so I struggled through the rest of residency in this like secret, not asking for the help that I needed.
And also, um, because of the resident insurance, I had to get treated in the same hospital that I worked. So I was constantly, you know, sitting, getting infusions among my chemotherapy patients, who I was treating and like, hoping that they wouldn't out me to the rest of my team and make it known. And so, um, it was definitely really hard, um, until I graduated.
And then I finally told everyone and figured that after that, if I was gonna work somewhere, I needed them to know because I couldn't keep keep on that way. And First Descents was actually the first thing that I did in an MS related sense after going through all of that and coming out into the open. So it was really necessary at that time and also really transformative for me.
Um, so I think it was like, it was exactly what I needed at that time, uh, to help kind of transition me to, to the rest of my life, essentially. Um, and then after that, since then I've participated in some other MS. Related groups. I did a, a run with MS. Run the us where I ran from San Antonio to the Gulf of Mexico.
And then I've done a few sponsored events with, um, a Texas based group called, uh, meat fight. And, um, I ran the Dallas marathon with them and then we just hiked the grand canyon like two weeks ago. Wow. That's amazing. So First Descents definitely kind of elevated me and jump started me into a much, much better place physically and mentally.
I just wanted to share a comment about some of the things you were saying, and then ask a follow up question. Um, comment is that disclosure piece is such a double edged sword. Mm-hmm in one of our prior episodes, we had somebody talk about the research of disclosure and how hiding things can really impact mental health.
But then another person who was an expert in employment said how much disclosing your diagnosis can have a negative impact on employment. And so it's such a balance that people with MS and lots of other chronic illness have to make. Um, and those decisions are not easy and can have a really big impact.
So I just, I, I totally felt you, when you were saying all of that, how did you find out about First Descents? Uh,
so actually my, my medical team over, um, at the University of Texas in San Antonio, they're F fantastic. And, um, they were very on top of all the latest, like MS research. So like for example, I know a lot of people with MS who, you know, were avid runners and things were, their doctors would tell them to stop running.
And my, my doctor from the start was like, okay, we may not get you to the point where you can get back to running ultra-marathons, but we'll get you to at least a marathon. We'll keep you, you know, we'll keep you going. And so they were always very much like promoting physical activity, which is very much known to help with MS.
My nurse practitioner actually is involved with, uh, First Descents. Um, and she was doing like chart reviews and she's like, this program would be great for you. And she had told me early on, but I, because I was keeping it a secret, I couldn't, I didn't feel like I could get involved in any of these groups.
So once I graduated, I applied and, um, she was actually super excited that I got chosen for it. And, um, and so, uh, that was kind of on my radar. I just was, had pushed everything until I finished residency and kind of had some, I guess, freedom to, to explore the opportunities that are out there.
Oh, absolutely.
That's great. Um, so Mackenzie, I wanted to ask you about your background, uh, to share a little bit about yourself and how you got connected with First Descents.
Yeah. Great. So I'm so glad to be here. My connection with First Descents started, um, several years ago, uh, I had spent nearly a decade living and working overseas and international aid and development work.
I was in the foreign service at the time in central Asia, uh, designing and managing programs overseas for the, for the federal government. And my brother was diagnosed with stage four cancer. Um, I came back to the United States. At that time. He was given six months to live, um, without treatment. And he had applied for First Descents program.
And unfortunately he wasn't able to make it out. Um, his health, the timeline just didn't work out for him, but I think we both really fell in love with, with First Descents and the mission. And he ended up not making it. He, he lived for two years, fortunately, which were two beautiful years that we all had together.
Um, but. Watching him go through his journey and seeing the, the impact of him spending time outdoors and the need that he had to create peer to peer connection and to connect with others who had gone through a similar experience, as well as the power that the outdoors was having on for me and my healing journey of trying to make sense of what was happening to my brother.
It just made a huge impact on me, um, at the time. And I felt really compelled to make inroads and to continue serving the young adult community through outdoor adventure programming and, and peer to peer support. So kind of a sad story, but made the, the most of it in terms of turning that kind of tragic event into one that, um, can help thousands of others.
Yeah.
So you and your brother sort of started on the participant side and then you transitioned into, um, being very actively involved in the programming. Um, can you share a little bit about your current role and then also what are some of the programs that are offered by First Descents. Yeah.
So my current role, um, I've been here since 2018, so, and that's the first year that we started MS.
Programs. I came in at that time as the director of programs. Now I'm the, uh, vice president of programs, but essentially what I do now is I see oversee all of our programmatic initiatives at First Descents. So that includes our core programs, which is what, um, ultra went to. So those are our outdoor adventure programs and destination based programs domestically.
I also oversee our, uh, healthcare partnerships and a little bit about that is First Descents partners with medical centers to extend our free adventure programs to more young adults in need of psychosocial support. Prescribe adventure is one of our ongoing initiatives to engage healthcare professionals like yourselves, to empower their patients by referring them to experience.
The healing power about door adventure, and then community connection. Um, so I oversee partnerships, healthcare partnerships, and prescribe adventure specifically. And then I also oversee our broader community engagement initiative, which is what does it mean to be part of the FD community after you've gone through a facilitated program like ultra did, and we're a 10,000 person alumni network.
Um, so there's a lot more continuity that happens within the alumni community outside of just the facilitated program.
Great. Well, and I will ask you more about that later too, because I think that's a huge part of this. It's not just sort of visit once and be done. There is, there is that network and I think that's so important before I turn to Dr. Herring, uh, to Tracy. Uh, I wanted to ask what you meant by young adults, because I think that that might conjure one sort of image, but I think that it's a little more broad than we might initially think. Yeah. So
First Descents serves young adults ages 18 to 45 impacted by cancer and other serious health conditions.
And so that includes MS.
Great. Now, Dr. Herring, you are also here. Can you share a little bit about who you are, your professional background and, uh, your interest in First Descents as, as well as how you got connected with multiple sclerosis?
Yes. Um, so great to be here. So, um, I am a, a rehabilitation psychologist.
Uh, and I work, uh, at the university of Washington, uh, in Seattle. And I spend a majority of my time at our MS center seeing patients and our specialty focuses on, uh, working with people, living with any kind of injury or chronic illness like MS. And the work I do with patients, uh, can vary. But a lot of times, um, you know, it's not just mental health needs.
Um, so not just anxiety, depression, but also conversations around adjusting to a diagnosis. I know Jennifer touched on this when she gave her, uh, experience with the diagnosis. And then we also talk about some behavioral strategies or interventions to help with symptom management. MS. Has a lot of symptoms such as pain fatigue.
And so we talk about, are there in addition to maybe. Medications, but also other behavioral strategies to support patients in managing, managing these symptoms to improve, uh, functioning, um, and ability to kinda continue to engage, uh, in, in their lives. In terms of how I ended up in MS. I, I, I kind of started as more of a general psychologist.
Then I was doing more hospital based kind of work. And then I fell kind of accidentally into rehabilitation psychology. Mm-hmm , uh, I loved it. And, uh, I did a postdoc in rehabilitation psychology, and then I did a research postdoc in, uh, MS and I really enjoyed that. And so I feel very fortunate that I've ended up in a place where I get to work with patients with MS uh, for a majority of my, my clinical time.
And then how I up at kinda getting interested in this idea of outdoor adventure programs and spending time in nature is that I, I was fortunate enough to do this incredible, um, Week, long river trip. That was also a, a writing workshop. And I didn't really know what I was getting into, but it was transformative.
And part of that right, was the river trip. And then the connection you build with the, the other participants. And so I, as I was doing it, I, I started thinking like clinically and research wise, why aren't we doing this for our patients? Like, this is incredible. So I got off the river trip and I went to Google, of course.
And I just started to try and see like what's out there. Is there anything out there? And then I, uh, started hearing more about First Descents and then that led to this research paper that I wrote, uh, with my colleagues, uh, about like, this is, this is happening. People are doing these programs, uh, and we as clinicians and researchers should be more involved, um, to support our patients.
Great
as we go along, I'm gonna ask you more about that article as well as what is some of the research that we know about outdoor adventure programs. But before I turn back to asking a few more questions to Mackenzie and Jennifer, can you share what you mean by the definition of an outdoor adventure activity?
Generally speaking, what are these activities trying to achieve for participants?
Yes, so my colleagues and I used like the existing research to kinda guide, uh, our definition. And so using what we found in the literature,
we described outdoor adventure activities or programs
as programs or activities that are using some type of, of adventurous activity.
And I think Mackenzie and Jennifer can speak to this more, but that could be like rock climbing or, or whitewater kayaking to really, um, enrich quality of life and promote personal growth. And so. What personal personal growth could look like. And again, this is according to what I we're reading in the literature is, you know, improvement in self-confidence willingness to take some
healthy risks,
uh, enhancement in communication skills, uh, and problem solving abilities.
And that's, you know, that's just to name a few.
Hmm. That's great. Okay. We will dive into that more. Okay. In a little bit, Mackenzie, I wanna come back to you and ask, dive a little bit more deeply into what are some of the specific programs that you're offering for people with multiple sclerosis. If they joined this, um, uh, First Descents, what are some of the activities that they would be engaging in?
Yeah, they vary year to year. Um, as I mentioned, we started MS. Programming in, in 2018, but I'll just speak to this year specifically. So we've got, um, three exciting week long programs happening this year for the MS community. Um, one of them is a week long rock climbing program in Estes park, which is the one that ultra went on and where we met.
Um, and that's just outside of Rocky mountain national park, one of, um, the nation's largest, uh, national park. So very beautiful setting there in the Colorado Rockies. Um, then we have a whitewater kayaking program on the rogue river in Oregon. That's also a fantastic, um, program and we stay at a beautiful lodge right on the river.
So the, the Putins and the takeouts are very, very easy. And then the other one that we're really excited about is, uh, Santa Cruz surfing program. So that's in Santa Cruz, California. And we have a tremendous amount of demand from the MS community this year for these programs. Actually, it's a really great indicator because we intend and wanna grow these programs year over year.
So it's great to see that the MS community is coming out and, and wanting to participate in these programs.
That's wonderful. And so since it' started, how much has this program for MS. Grown over the years and what do you see as the future for it?
So we started very slowly, um, in 2018 we ran one pilot program and, and Turo Montana, and that was a whitewater kayaking program.
And that's actually, when we started researching and establishing a baseline in terms of the efficacy of these programs, the following year, we did three and then we were planning on doing 1, 3, 6, 9, and slowly increasing them. Unfortunately the pandemic, um, reversed some traction for us. Um, rightly so the MS.
Community, you know, a lot of conversations with the, uh, alumni community, as well as, um, medical providers, you know, we felt it best to reduce the programs during the height of the pandemic. Um, just cuz folks weren't feeling safe, heading out and traveling and, and being in confined quarters with one another for extended period of time.
And we didn't wanna really encourage that. So it's really now this year that we're resetting building that flywheel again, getting back to our original intention of, you know, doubling if not tripling our programs year over year. So it kind of feels like, oh, we're restarting a little bit this year where we were in 2020 when the pandemic hit.
So we are doing the three, three programs this year and then at least six. Next year, but it kind of depends on how many folks we have interested in our programs in that first quarter. Um, we've had over a hundred applicants, um, for the MS programs, which is magnificent to see.
That's wonderful. So if I'm understanding correctly, you, you started working with individuals, diagnosed with cancer and then you've expanded into multiple sclerosis.
What made you choose MS?
Yeah, so we were founded over 20 years ago. Um, at that time we started as an outdoor adventure organization, primarily serving young adults impacted by cancer. Um, and then in 2018, well, actually in 2017, we started having some really exciting conversations with some of our partners and, and, and, um, influencers really interested in MS.
And we looked at the research and we, we actually found that there were a lot of striking similarities within the young adult community. In the oncology space, as well as the MS space in terms of lack of peer to peer support, interest and desire to find, um, non-clinical therapeutic interventions outside of a clinical setting, very similar psychosocial markers in terms of, um, experiencing tremendous anxiety, depression, fatigue issues with body image self-compassion as well.
And then overall more than anything, just that total lack of sense of belonging and community, which I think ultra spoke to, um, initially at the beginning of this episode. So we realized, wow, we could really support the MS community through our respective programming. And, and that's how it really came to life, is looking at the research and having a lot of people that really believed in it.
Okay. That's wonderful. I'm gonna turn back to you, Jennifer. I'm guessing that many individuals with. Especially those that may have some challenging physical limitations, um, have worries about attending an outdoor adventure program and you know how to engage in that. And so I'd love to learn more about that from you.
I know that might not be your situation, but thinking about before you did the program, did you have any fears or worries about being able to engage in that even from a fatigue perspective?
Um, I actually didn't I think just being with First Descents background gave me a lot of confidence. There were a lot of things.
Um, like I had slowly transitioned. I was getting back into running and getting back to ultra things, but that's very easy to kind of mitigate and manage on my own. Like, oh, if I'm having this symptom, I like slow down. I need to cool off because it's too hot here in Texas. I need to do my runs early in the morning.
I was able to troubleshoot it on my own. But, um, but I was also very familiar with running. Um, and so new adventures in my new space and new knowledge of my disease were, uh, a bit more concerning to me and like, oh, what if this happens? And what if that happens? And what if I can't do it? But just knowing that I was going with a whole group of people and the whole intent was to be for people with MS.
I knew that they would be prepared for it. It wasn't like a trip where you just sign up for a rock climbing trip with, you know, with a group and everyone else is, is fine. And no one knows what MS is. This whole thing is designed for people. You know, who are going through this. And so I knew that, you know, there would be precautions put into place from them, um, to kind of troubleshoot anything that might go wrong for people on a certain day and rock climbing, especially.
Um, I chose that one in particular. Um, one, because I hadn't, I'd only done it once before and I was too afraid to try it again with some of the weakness I was left with and the variability and not weakness or my vision or fatigue and things like that. But rock climbing's really good, I think in the way of dealing with the MS thing, because.
There's kind of short bursts of energy. So you kind of like go and try and go up for a bit and then you can rest. And so you can kind of recover and a lot of things with MS does get better with a little bit of rest or like taking a break. And so I knew I'd have that kind of opportunity to do what I needed or what I could on that day and then pull back, um, if I wasn't able to, and that did happen through, through the days, especially I think our first day got very hot.
We were kind of in an exposed area by the afternoon. And, um, being at elevation with the sun, it kind of, you know, uh, you didn't even realize it until you were kind of partially up the, the wall there. And then, you know, we were kind of just aware, like, okay, we should all go sit in the shade and kind of cool off and get some ice.
Recover a little bit and maybe not try again for like a half hour and, you know, and some people had other like further limitations of like, uh, more issues with their weakness, but everyone was able to participate and everyone was able to, um, to get what they needed out of it, um, on varying levels. And the group was really great about kind of having a variety of, uh, different levels of challenges for everyone's different levels on that day, because every day is
different.
Yeah. It sounds like also that would give people the opportunity to really test out. Um, how do you manage heat sensitivity, or how do you manage physical activity? Um, and how does it impact your body? And so kind of having that support around, uh, other people with MS, as well as the First Descents program, it seems like it would give people the opportunity to test those limits and have less fear around it.
Yeah, exactly. And, um, it's also nice because if you're with people who don't know MS, or you're just with family members and they care about you and they see that suddenly. Your left arm is weak, then everyone is, you know, concerned and, and rightfully so, but they're maybe overly concerned and want you to pull back and take a rest or not do it.
Um, and not try so hard, but when you're with other people with MS, you're like, oh, you know, the sun, like my, my arm's just feeling, feeling off today. And, and everyone's like, oh yeah, that's awful. And like, but everybody just knows. And you're, and no one judges you, if you keep trying to push through it, because they know that like it might change in an hour and it might get better, it might not.
And it, there's just kind of a really good sense of community and no one's, um, everyone kind of knows how to troubleshoot it. And the other thing too, is that there's with the group, there was a difference in like how long people had been diagnosed. And so it was kind of nice. I was still on the newer side of my diagnosis at that time.
So it was nice having some people who'd been through it for longer and how they troubleshooted, um, and dealt with their side effects and symptoms and things that they tried that helped. And so it kind of brought about a good conversation that, um,
Like we've talked about. A lot of us
don't really wanna be on medications for every side effect that we're having or symptom that we're having.
You know, at one point in my early diagnosis, I was on, I was taking like 52 pills a day and wow, because you start with one and then you have to take something else for another side effect of
that. And then it just, it escalates. And then, you know, I got so frustrated, I kind of, uh,
started to taper off everything and was like, I'm gonna find a way to just do this with behavioral
things and take the minimal amount of medication as possible.
And being with that group, that's kind of, it was the general sense as well. And so, um, it was great to learn from everyone and get their perspective on how to make our
lives better without kind of just
overloading ourselves with, with a lot of medication that, uh, can be helpful, but also can have a lot of other side effects that are unintended.
Yeah. Yeah. You know, as you were talking, I was thinking about there's a chronic pain researcher at university of Washington, and maybe Tracy, you can speak to this who talks a little bit about that balance of when our family members or support partners try to do too much. And that actually impacts your ability to adjust and rehab and kind of incorporate this new diagnosis or this symptom into everyday life.
And that by allowing people to test those limits, it allows them to actually grow in rehab and adjust and incorporate this puzzle piece in.
I think you said that beautifully. I, I talk a lot with patients about communication around with, with family members, um, because of that very component, um, when there's an MS diagnosis or when people are having symptoms and family members are, are responding in certain ways that can be maladaptive or unhelpful.
So Mackenzie, I wanted to turn to, to you because how does First Descents prepare for people's symptoms? So we know that MS. Things like Mo mobility challenges or weakness, fatigue, heat, sensitivity, cognitive challenges, all those things that Jennifer was mentioning. Um, so how do you adapt the program to fit this range of symptoms or maybe allay people's fears if they have those concerns coming in?
Yeah, I'll start a little bit from the top in terms of how we design the programs and how we enroll experts to help us design these programs. At First Descents, we have a medical advisory board, so it's a six person team, um, comprised of medical professionals, including a rehabilitative specialist who works at the MS clinic at, uh, Swedish medical in, in Seattle, Dr. Simon Gale, it's a big partner of ours, um, and a big advisor to me. So I enroll and work very closely with the me medical advisory board to support us, um, In the MS space and all the communities in which we serve. Um, then we also work really closely with other patient advocacy organizations like national MS.
Society and Cando MS. Really, to educate our staff, to learn more about how we can make adjustments to better meet the needs of our participants and ultimately to reach more and more young adults impacted by MS. When it comes to the application process, an applicant would submit an application to us. And then my team on the programs team is, is all trained in, in MS and symptom management.
Uh, we use a very individualized tailored approach to meet people where they're at have a conversation with each person review their application. Ask for what symptoms they usually experience, what precipitates them, how best to manage them. And then we have a team of 20 medical, uh, reviewers who are all medical professionals who review these applicants, um, with my team.
And ultimately, um, based on the information that's provided place applicants in the best, most appropriate program for them based on their needs, um, their geography, the symptoms that they experience, how progressed they are. So just to reiterate, it's a very, very involved kind of medical process where we enroll a lot of professionals who are, um, experts in the MS space.
And then we use this very tailored individualized approach to have conversations with our applicants and make sure that they feel safe and comfortable doing this because for many people, you know, they, they don't. For most, I'd say 99% of the applicants or participants that come out have never rock climbed before, or they've never gone whitewater kayaking before.
So, um, it's just kind of holding their hand and, and walking them through the process. When it comes to symptom management out at programs, we do a number of things, um, and we've learned and learned over the years. And, um, obviously made a lot of improvements since we started four years ago. Um, but a lot of things that we see are, um, fatigue, temperature, regulation, um, heat, sensitivity issues, vision, um, balance issues, spasticity.
So Can Do MS trained all of our staff this year on symptoms and symptom management. We do that, um, annually in terms of educating our staff. We also educate and train our partners. Um, that includes our outfiter partners, we work with trained and professional guides who are familiar with our community and their, their needs.
So we have, our programs are fully stacked, essentially trained professionals. On our side. Our staff are really there to hold the space to make sure the needs that the participants are being met. And then we have professional guides who are really there as trained certified individuals who can ensure the safety and the risk management aspect of things.
While my team really manages group dynamics and facilitation, but some things that we do for symptom management is like, you know, for fatigue, obviously we see a lot of this out at programs and it's a result of stress or travel to programs or unpredictability or change in one's diet or regular schedule.
My staff manages this by communicating the plan as much as possible, avoiding surprises, providing lots and lots of breaks, kind of what ultra said there, and lots of time for sleep, trying to find time to and ways to reduce, um, lots of sun exposure. And you might be wondering, well, how the heck do you do that?
Like on a surf program or on a whitewater kayaking program? Um, we just improvise and adapt. We'll find shaded areas. We'll put up tents. Sometimes we have a support raft on our kayaking or our whitewater trips with a shaded device. So people can opt out and they can pull their hard shell up onto that boat.
And they can just say, I need a break. I need a timeout. And then we really are, are supportive of allowing people to opt in and, and opt out and use the challenge by choice motto, which is nobody's forced to do anything. And essentially our programs are. So easy to enter and get through that folks can, there's always opportunities for them to take a break or opt out and then rejoin the group whenever they feel like it.
Mm-hmm . I mean, I could go down the line of how we manage symptoms. I know that we don't have time for that, but like temperature sensitivity is another big one that we see and, you know, water provides a really great cooling mechanism. We also send out cooling devices, um, cooling vests, um, and actually the majority of our participants haven't needed to use the cooling vests, but they are just there, uh, for those that might need it at, at whatever time.
But yeah, we just, you know, another thing that we see is cognitive changes for folks, um, added our, our programs. And so my team really tries to employ multiple different learning techniques for various learning styles, um, visual auditory, reading kinesthetic, and. You know, really allowing the opportunity to modify and shorten activities, um, and allow for that downtime so that people, you know, that are having issues with memory or attention or, you know, information processing can really take a break and re rejoin the group whenever they feel like they're up for it.
I have heard from some participants, anecdotally, that actually our programs have helped them say when they need to take a break mm-hmm whereas before kind of, yeah, kind of like what ultra had said, there was like, they were afraid within their respected normal non-MS peer group to say, Hey, I'm tired or I need to take a break.
So they kind of push and charge through. But with our programs, folks are learning to say, Hey, I'm. You know, I need a break or I feel uncomfortable and for the first time in their lives and that, so they're taking that back with them in their, in their daily life. And that's had a huge impact on them as well.
Wonderful. Yeah. You know, I've, I've, I've heard some of the logistics I've, we've hinted around what a powerful program this is, but this question is both for Jennifer and Mackenzie. What do you think are sort of the take homes, the highlights? Why is this such a powerful
program? I think there's so many different reasons.
Like, as you've heard Mac talk about throughout this, the there's so much thought that goes into this and so much, um, like design to these programs to make it as transformative as they actually are. And this is a little spoiler alert for anyone who wants to go on the trip and be surprised then maybe speed through my section here, because I'm kind of gonna give away a lot of the things that I didn't know were gonna happen that like made such a huge, um, impact on the program.
And I think like, number one, you walk in and it's like, okay, drop your names at the door. Um, pick a new name and be, and like, that name means a lot, you know, cuz you're just shedding, like your whole prior self and you're taking with you what you want to on that. So, you know, like, yes, people knew I was a doctor, but it wasn't like part of my identity at that point it was like a little thing, but not the big thing.
And then like, yeah, I was a runner, but like that wasn't the whole thing. And then it was kind of also like for my nickname, like okay, what I was as aspiring to like okay. Being kind of like ultra and a little over the top and continuing to like push through all of this. And um, so it was a kind of nice reminder and like I.
I don't know anyone in my program's real name. Um, and so, you know, everyone's in my phone with these like weird names of, you know, uh, little Einstein and like other like interesting names that you'll flip through and it looks weird. Um, so that's number one. And you kind of also with that, like get a small insight into the person what's important to them.
What kind of things make them who they are much more than just like a name that was given to them at birth? So, um, that's kind of a really good like opening thing and like unintended or intended icebreaker to the whole group to get, to get to know each other. The other, um, really magical thing is that, um, from day one we do not use our cell phones, um, during the trip.
And so you are like fully plugged in, like you leave your phone off, it's left at the whole, at the place. So you, you're not thinking, you're not thinking about the outside wall world. There's no comparison. There's no kind of worry about like, The things you left behind at home. And then like, you know, cuz people will ask like what about taking photos of this amazing experience, but someone is on staff to do, to do that for us.
So they're taking photos the whole time and better photos than you take with your, your phone. Cause they're kind of, you know, up there, uh, climbing the wall alongside of us and taking it, you know, kind of from the top with us. And so, so that was also really important cuz that just allowed us to focus on ourselves and things.
And with that, um, everything. Like Mac was saying is planned down to a T we were aware of it. We had a schedule that we didn't have to make. We didn't have to prepare food or like organize things, drive ourselves anywhere. So with the fatigue management, that's also a huge thing because a lot of there's a lot of fatigue that comes just in our daily lives of doing chores or making decisions or, you know, driving that leaves us depleted to do these like fun things or have these like really emotional kind of breakthroughs and talks with each other.
Um, because you're just, if you get through your day doing all the daily tasks, like you're too tired at the end of the day to, you know, um, sit down and have like a really deep conversation. You're just kind of ready for bed. And so with taking all of that off our plate, you know, um, we were allowed to like kind of just given the freedom and, uh, to enjoy the experience and bond with each other.
And on that bonding experience, there were some, um, You know, kind of like therapeutic interventions that were set in place with whether it was like on the day where the staff who was just genuinely interested in, like, what, what was going on with us, for MS. Like how our MS. Journeys were. So we talked a lot about it throughout the program.
And then specifically at night we would, after dinner, sit around at the campfire and we'd have like a very like, Um, different discussion each night, it was kind of targeted and we would go around the circle and everyone would talk about their experiences. And, you know, I remember it was the first time I talked about like my diagnosis and going through that with basically this huge, like what seemed like a, something that I had done wrong, um, through residency that I had to keep through this secret and not be allowed to tell anyone.
And, you know, I remember just kind of like bawling my eyes out at the cry at the fire, but it was really, uh, a great like catharsis and release of all of that pent up emotion. And, and so many people were able to relate, um, that it was, it was really nice and, and helpful. Um, and everyone felt that way. And you know, you heard different people's journeys and everyone's was a little bit different, but you could always kind of relate to it.
And also it, it just created a really firm bond between all of us, because we shared so many personal things that even people really close to us probably didn't know about. And then we also had at the very last day, um, before we left, we. Kind of walked outside in this beautiful lodge in Estes park and, you know, talked about what, you know, what the program meant for us.
And we tied these, um, these like bracelets around, like everyone gave each other a bracelet so that we could be reminded of it. And they told us not to not to cut it off and just leave it for as long as it stayed on. And interestingly, my bracelet stayed on, uh, for the next like two years until I took my final board exam, my oral board exam for radiation oncology.
It was actually the morning of my board exam that I like went to grab my coffee and the bracelet just fell off. And I was like, oh, that's, that's just perfect. Like, that's exactly what it is like, because it was just kind of, you know, the moment that, um, I started to move into the next part of my life and then taking that exam was the last step I had to do.
That was kind of like. My big fear of holding me back in my career. And, uh, once that fell off, it was kind of, I was, I felt so much better about my exam too. I was
like, oh, I know I'm gonna
pass now because like, everything is just, this is just a great sign. So I think, you know, there's so many different aspects, but putting it all together just made it like one of the most amazing experiences to kind of move to a new stage of like the diagnosis and move on, uh, not necessarily move on, but like move with it, but move with it into like a whole different energy and space and outlook on everything.
So powerful. There's so many pieces to all of what you just said. Um, I'm not even gonna try and summarize it, so I'm just gonna go right over to Mackenzie. I mean, you know, Jennifer's story, but you've seen so many other stories. What do you think is kind of the secret sauce or why do you think this program is so powerful?
I I'll just echo kind of what ultra said. I think it's a lot of it she covered, but really what we see at the end of the day for thousands of folks, whether it's one's caregiver, um, or somebody who's experiencing their own diagnosis is that our programs really work to destigmatize the diagnosis, normalize it, and then give our participants the strength and confidence and network, um, through supportive peer to peer relationships, to help them thrive in their daily lives.
And the outdoor adventure aspect of it is really just the backdrop. It's really just the lens and the environment in which this magic takes place. But the magic is all really among the human to human connection that's created. And I think what people are drawn to in our programs is that. Yes, there is a, an outdoor adventure component of it, which lends itself to tremendous opportunity for professional growth, um, identification of one's limiting beliefs, um, and then building self confidence mentally and physically and spiritually in one's self again.
Um, so that the outdoor element is the, the, the place in which we can make this all come to life for folks. But at the end of the day, it's really the, the people that come together. Um, and that's what we hear time and time again on our surveys. And we have a really strong E and E component of our work and track and measure the change, um, that participants are reporting pre and post program.
And, um, more than anything, it's just the feeling connected to self and others for the first time in their lives.
I wanna turn
to Tracy and talk more about the research side of this. So we've heard sort of the personal experience. Um, but what do we know about research cuz qualitative isn't everything, but I think it's very powerful. Um, so we know that these kind of outdoor programs are available for the general public they're available for people with all kinds of different chronic illnesses.
And then now, MS. So can you go through each of those different domains? What does research tell us about the benefits here for just anyone who joins it? People who have a chronic illness and maybe even more specifically.
So, yes, I will report on the, uh, the, what the research says. I don't find it as invigorating as , as Jennifer's story and, and what McKenzie said.
Um, but I think it's important in the fact that I, it supports what we're hearing here today, which is great. Um, and so again, my colleagues and I combed through all the existing research and what we found was, you know, there are a lot of programs for the general population and other kind of specialty groups.
So veterans, people that are struggling with substance use, things like that. And, and what we saw in terms of findings was that those programs can help with mental health. So anxiety, depression, increased self confidence, uh, improved social connectedness sense of community. So thing, again, things we just heard.
We were excited to see that though, there all, there is also existing research on, uh, the benefits of these programs for medical populations. And so we found quantitative qualitative and mixed methods studies focused on medical populations. So we found, uh, cancer type one diabetes acquired brain injury and with MS
and some of these, uh, studies are from First Descents actually. So please jump in Mackenzie. I don't wanna step on, uh, your toes there, but, um, just to provide kind of a general overview of the findings is that benefits included improved subjective quality of life and, um, reductions in anxiety, depression reduction, reductions in distress improvement in self-esteem, uh, increased social support and reduced alienation.
Again, I think that one's really important and maps on well to what we just heard. Um, and then also, uh, increased physical activity levels, which, uh, as Jennifer said, is, is super important. Um, especially. For people, um, living
with Emma. Absolutely. Um, so I wanted to also hear from Mackenzie that I know that there is some preliminary research, um, for MS.
But if you can speak to, you know, any of the research that First Descents has done or collaborated with other researchers on, that would be really helpful.
Yeah, sure. Um, so First Descents is committed to studying program impact and efficacy. Um, to date we've participated in numerous impact studies on our oncology programs that have informed ongoing program structure and evaluation.
And while our original, um, studies prove the efficacy of our, um, adolescent and young adult oncology programming, we've also had research collaborations that show that FD has had a significant impact on young adults coping with MS. Um, we did, um, run some baseline studies in 2018, in 2019 with Dr. Samuel Kane and our initial findings.
Granted it was a very small sample size and ultra was a part of that, um, community in which we, um, researched, uh, but out of the initial programs, we did find improved self efficacy among our MS. Participants. Um, we did find reduced anxiety. and then actually we weren't, we weren't really looking for this, but we did find stronger mindfulness based.
Um, self-efficacy among our MS participants, which a lot of our programs are teaching in small ways, presence and mindfulness, whether that's in what we eat or how we compose ourselves in challenging situations. Um, so that's a really exciting new thing that we're looking into and we're exploring more and more of, we are interested in continuing to research the impact of our MS programs in particular.
Uh, we do have a partnership going right now with NIH, um, studying the impact of our programs on the healthcare worker community that we're serving. So we always kind of have some exciting research endeavor in place, and I am looking for that new, next exciting research endeavor on the MS side of things to continue just building and, and adding to our portfolio of.
Of research projects that we've done. If anybody's interested in learning more about our research that we've done, you can always check it out on our website on First Descents, um, slash impact.
Oh, that's wonderful. I was thinking, as you were talking about mindfulness, there's been some research in MS.
That's coming out that, you know, people who regularly engage in mindfulness, it not only impacts emotion, regulation, but also cognition. And so I had this a curiosity if maybe that's happening with your participants as well.
Yeah, we've actually, it's been interesting when we look at the mindfulness piece, um, we we're actually finding that people have had greater emotional regulation of themselves as well as in their relationships with others.
So we have heard, Hey, this is having a, a tremendous impact on me in terms of my own self-regulation, but it's also having a positive impact on. My personal relationships on my professional relationships, et cetera. And we are really excited about serving caregivers too. Um, because we feel that it's really important not only to serve the patient, but the support network in which they are living within from day to day.
So right now we, we actually serve oncology caregivers and I really wanna start serving MS. Caregivers. We just need to build that demand. So if you all are interested in, you know, feel free to share that, that opportunity with your patients, um, and have their caregivers express interest on our website, and we're really gonna use those numbers and that interest to really determine, you know, if, and when we're gonna start MS.
Caregiver programs, because we are seeing this impact. On regulation and on relationships outside of just the patient themselves. So we really wanna extend that programming to loved ones as well.
I think that could be incredibly powerful. You know, I know there's lots of people who are trying to get connected with caregivers and many times they feel so isolated.
Uh, and this could be an awesome opportunity to bring them in the fold and connect them with other people who are maybe experiencing similar life journeys. Yeah. I wanted to turn back to Tracy and ask a little bit about the clinical side of things. So you're a researcher and you're a clinical rehab psychologist.
What do you see as sort of the overlaps with traditional psychotherapy? How do you think this is different than traditional psychotherapy?
Yes. Good question. So this was, um, I think one of the most enjoyable parts of. Collaborating with my colleagues, um, is looking at like, what are we, what kinds of interventions are we doing in the traditional therapy sense?
And how does that align with what's happening in these outdoor adventure programs like First Descents? And so I think the two primary similarities that we see is one is behavioral activation, which, which aims to increase engagement in pleasurable activities. And this is a really helpful treatment for depression or improving mood.
It helps people get out of this cycle of being disengaged. And so we noticed that these programs very much center on getting people engaged, enjoyable activities. Um, and so
we thought that
was definitely one parallel. Another one. And Jennifer, you mentioned, this is the focus on physical activity, right?
Physical activity, activity, interventions for people with MS. I've been shown to improve strength, endurance, enhanced quality of life, reduced fatigue and depression, super important. And so seeing the physical activity component of these programs is also, I think, very promising in terms of helping people either maintain their level of physical activity or increase their physical level act of activity, or even just like learn to like physical activity.
I think that's another important piece. And then of course like these secondary benefits that have been mentioned today, right? The social support's so important. I think especially among my younger patients, they feel so isolated. You know, they'll talk about wanting to find other people who are, have MS who are in a similar situation.
So they may go to a support group and then they realize, wow, a lot of these people are in a totally different phase of life. And I can't, we can't relate to each other whatsoever. And so this having an environment or a situation where, um, participants are experiencing similar, uh, either life events because of the phase of life they're in.
So that's important. And then of course, I think just the uniqueness of these activities that, uh, people are doing that can help with, I think, and Mackenzie, you touched on this like changing, perceived capabilities, uh, learning to problem, you know, learning to refine problem, solving skills and communication skills.
And, you know, we talk about that in the therapy room, in the treatment room and I try to encourage patients to then go out into their lives and practice these things. And I think that's helpful, but there's something about actually really having this opportunity to trial these things, um, that I think is.
Different and perhaps even more, uh, valuable than what we can do in the traditional therapy. I mean, the other difference of course is like that these patient, these, these programs are outside. They're in nature. The, the cell phones are gone, like what an extraordinary opportunity that we can't as easily replicate in a stark like hospital treatment room.
So, um, there's such value there. And, uh, we know that like being outside has so many benefits, right? In terms of increased happiness, subjective wellbeing, positive social interactions, uh, increased sense of meaning. And, and even the mindfulness piece that was brought up earlier, we know that people, when they have a connectedness with nature, that it, it results in a higher, uh, level of mindfulness and higher levels of mindfulness have been shown to improve quality of life, anxiety, fatigue, depressive symptoms in people with
Emma.
So.
Again, we can't, we unfortunately can't replicate that in a therapy room. So it's, it's just so exciting to know that like these opportunities are available elsewhere.
Absolutely. And can you share, I mean, we talked a lot about the benefits, um, but I think, uh, we would be remiss in not talking about, are there any drawbacks, are there any concerns, questions?
Are there people that this might not be beneficial for? And I'll start with you, Tracy.
I think from the research side and from like combing through all the literature, I didn't really necessarily find anything focused on specific negatives of outdoor adventure programs. I mean, sure. Some people maybe didn't have any change in terms of their outcomes.
Um, but I didn't find anything specifically negative, I think as mentioned previously, People are most often concerned about perhaps like exacerbation of symptoms or managing symptoms. Um, and so I would always recommend that they talk with their provider, um, and the program, right. About any potential medical concerns and how to best mitigate these concerns.
You know, I, I just I'd hate for someone to just rule themselves out. Yeah. Because they, they think that due to their MS symptoms, uh, they wouldn't be able to do a program. And so, uh, encouraging them to have these conversations, to how these, again, symptoms could be managed in these different settings,
Mackenzie, any follow up thoughts.
I mean, Tracy just covered it. So, so beautifully there, we, we haven't seen any consequences or necessarily negative feedback from, from our programs. I think the exacerbation piece that Trac Tracy covered, there is something that people are worried about. Um, and that just, you know, how we best mitigate that is just creating that open dialogue and, um, communication with everybody out at, before the program and, and at the program.
The last thing we wanna see is people afraid to, to speak up or afraid to keep the group back. And that's something that we're really careful about. And, um, really we don't, we haven't seen a whole, whole lot of that. There are certainly people that come out to our programs that are at different levels and it might take somebody, you know, a day or two to feel comfortable of.
Hey, you know, I don't wanna hold the group back or everybody else is less progressed than me that there might be a little bit of that. Just trying to understand where one fits into this greater puzzle. Um, cuz I've never been there before, but we really, as I mentioned, take that, you know, very.
Participatory individualized approach that, that quickly, that fear quickly goes away. And we really try to make adjustments for people throughout the entirety of the week. So yeah, if, if anybody has any doubts, like I'm too progressed or I have have too many limitations to do this, I, and they're just gonna, you know, take themselves out of the potential list of people that are interested in doing this.
I'd say, take a, take a leap and try something new and different and, you know, submit an application. And all it really requires at that point in time is having a conversation with our staff and then they can just talk through it, talk through people's concerns and fears and, and then decide together if it's, you know, the, the thing that they should continue doing or not.
Yeah, it's a great model. I'm gonna turn back to Jennifer. We mentioned food or you brought up food. I know some people are really concerned about diet and food. Um, so how was the food on the trips?
oh my God, the food was amazing. It was better than I normally eat in a day or just ever. And, um, everything was prepared.
Um, so well, and you know, I think it was really kind of meaningful to me when we came in, the, the staff that was doing, um, that was responsible for our food was, you know, they were talking to us and they were like, oh, well, we read. These books. We read this book called the walls protocol. We know a lot of people follow that and at the time I was following it.
And so, and if people haven't followed it or like most people in the MS community have heard about these dietary interventions, especially among our age group, as we. Mentioned kind of a little more interested in like doing less medicine and more behavioral changes. And so it was everything was there.
And the Wahls Protocol for those of you who don't know is kind of focusing on like whole foods, removing things that are potential, um, exacerbators of MS. So one of them, one that's, um, pretty well known to exacerbate MS dairy. So it, it excludes dairy from it. Uh, sometimes gluten and, and other, um, like legumes and things that can be inflammatory.
Um, but there was a whole range of things. So there was stuff with gluten, for people who preferred to eat it. And, um, there were vegan options for people, um, with that dietary preference and everything. So there were a million options, like we said, it took, we didn't have to cook it or plan it and everything tasted, you know, amazing.
And so it was like, it, we all kept commenting on how much better we were all eating than we normally would eat. So.
Good to know. Very good to know. What do you think? So both you and Mackenzie talked about the continuation of relationships post program. So we've heard about the program, but how, how does this translate into everyday life?
Can you talk about both the relationships that you've built and how they've progressed over time, but also what did you take away from this program and how is that being implemented into your everyday life?
So I think a lot echoing what max said before about the mindfulness thing, um, was helpful to, um, you know, take into of like how nice it felt to not be tied to your phone for a whole week.
And so to try to build that in more, more into my daily life and be more, um, present and on both sides of things, like both for me, with my MS of like learning to say like, okay, yeah, I need to do like take a break or, oh, I can't run that race cuz it's just gonna be too much for my. Body or I can't do this, or even at work like now I've set my schedule in a certain way where, you know, I kind of know that at certain working so many hours in a row is going to fatigue me or that like at the end of the day, I can't do things that are like heavy on my visual system for treatment planning.
I need to do those first in the morning and being able to tell, um, you know, my staff that that's how, how I'm functioning, um, and do that without really thinking about it before, um, before doing the program, I would always either feel guilty or embarrassed or, you know, think that I would need to power through to prove that the MS wasn't holding me back.
But now I've kind of just learned to embrace it and kind of take it as like, oh, well this is who I am. And today this doesn't work for me. And so today I need to, to like pivot a little bit and do something else on the. Same side, cuz she also mentioned that it's really good for caregivers and healthcare providers and you know, they have programs with oncology patients and it's really helped me to kind of see, um, the benefit of this for my patients.
And so, you know, whenever I have a young patient, I always recommend them to go sign up for one of these programs and you know, and go do it because of what it's had, uh, for me. And, um, it allows me to relate a lot for like, you know, the traumatic shock of being like young and otherwise healthy and living, you know, your expected normal life at that age.
And then getting this life changing diagnosis, it definitely allows me to relate a lot and then hearing the other stories of everyone who was participating in my group and some of the, um, the so-called staff, they were really volunteers, but they were participants who had done the oncology group before.
And so I heard their stories too, which, you know, um, kind of opened me up a lot to. To my patient's experience to let me really see what they're going through. And, you know, sometimes like also having a disease like MS. That's so variable and everyone has so many different, weird symptoms that don't seem related and things like that.
Uh, gives me a little like pause when, um, when I'm seeing my patients and they tell me, uh, that they're having a symptom that doesn't fit the textbook of like what their disease is or what I'm treating to just be like, oh, well maybe like, I don't know, I'm not in their shoes. Like, and I've actually used the First Descents, like Facebook group to ask people like, oh, my patient is being treated for this.
And she mentions this has anyone like, had this before? And then like, I'll find a whole thread or a million people being like, oh yeah, I had that. When I went through radiation, I. Okay. I didn't know that. And so it's helped me to kind of build my practice better and be a better physician as well. And give me access to like, fortunately for me, I do work in oncology and this there's a large oncology base in First Descents.
So I have a good access to, to a lot of people to help understand my patients better. And then as far as you know, with the group, we had initially a, a bunch of us that had plans to go out and rock climb again. And then with the pandemic and all of us, or most of us being on immunosuppressive drugs and being at higher risk, we, you know, that has kind of fallen back, but hopefully we'll be able to pick that up again in the future and, um, and meet up in person, um, rather than just through, um, through tech support and, and things like that of, of what we're going through.
So many powerful benefits, both for you as well as your patients too. That's wonderful. I'm sure patients are incredibly grateful to have you as their doctor when they find out about all of this.
They, they do. Yeah. And I've, you know, since, since this program I've kind of been, as I said, been more open. And so, you know, part of what I wanted to do was to raise awareness and, and things.
And so, um, since that time, like I did, um, like I mentioned, doing this relay across America and with that, we had to raise a tremendous amount of money to support the efforts and awareness and things like that. I had an article that was in runner's world about it. And so, and then some local news things.
So it's very much out there if patients do look into me, um, to see who I am, but it's also something kind of in the way we were talking about, about disclosure. I don't make it a forefront and I don't bring it up to everyone. But especially with younger patients who I think are struggling. To kind of feel like someone's relating to them or understanding them.
I have found it really powerful when I tell them about my diagnosis with MS and the things that I did. And it kind of, I think it gives them some hope in these programs due to, and to kind of hit on what you asked before about if there's any negative aspect. I think like the only thing would be like, if you're going to one of these programs at the wrong point in your diagnosis, or the wrong point in your journey, getting into this, if you're one, not like physically capable to actually do like real physical activity, but also just the emotional component of kind of facing it and addressing, um, the different components of your disease and talking about your fears and your worries about it would be a bit much.
But I think you know that when you kind of sign up for it, I think like, For most people, they kind of don't sign up until they're. They know that they're at a point where they're okay to talk about it. And to kind of like, for me, if I had signed up initially during residency, when I was still keeping it a secret,
I don't think I would've gotten as
much out of it.
I don't think I would've had a negative experience, but I just don't think it would've been as powerful. So, um, waiting until I knew that, that it was in my like mental capacity to, to kind of open up and meet with other people was, was helpful. For me,
that's a really helpful perspective. And also for mental health providers who are listening to kind of help problem solve that with people who are considering the program.
So that's great. Um, Mackenzie, how does, uh, the program try to facilitate, um, ongoing communication between participants as well as kind of follow up integrating these pieces into everyday life?
Yeah. You know, the pandemic has really changed the way in which we continue to interact among the community.
And we're, we're building a more broad based, um, community engagement platform. Now coming out of the past couple of years, that really focuses on is on community events and community adventures that are led by alumni like ultra, um, maybe closer to home. Um, we have heard and seen through various social channels as well as anecdotally, that so many of our alumni are engaging with one another daily, weekly, monthly, yearly, and haven't really had this way to track how many interactions are happening, but we know it's happening.
So really what we're trying to do is, you know, First Descents is a global community of 10,000 plus adventures. Strong. And what we're trying to do is build community events and a community adventure platform to our, for our alumni to plan adventures on their own and with our support and our resources, whether that's like sample trip ideas or discounts to gear or discounts, to guides, and then posting that on our website and enrolling in and sharing and inviting others to join.
Um, and that's not exclusive to just other alumni, like we've had people use our community adventure platform to plan adventures with their family or plan adventures with a friend, maybe somebody that doesn't even have a diagnosis, but essentially what FD is, is building out and trying to do in terms of provide continuity is to provide an events and, uh, adventure platform for the alumni and the alumni.
Community, um, to create their own self-led peer to peer adventures on their own terms and their own turf. Essentially these are live in person engagements that drive ongoing experiences and, and social connectedness. And this is really all in an effort because we know that, you know, social connection through community events and adventures will ultimately sustain what we're seeing out at programs in terms of improved self-efficacy and body image and self-compassion and peer to peer connect connection alongside with decline of episodes of anxiety and depression and feelings of alienation and isolation.
So a couple things, you know, we have feature events, we have annual events that we. Have every year, um, we have 80 ski parties. Um, we have regional salon events. We have community events. Um, we have our FD annual fundraiser ball. Um, we have New York city marathon, and then that also that community adventurous platform is something that we're building and hoping, you know, we can enroll more and more people to take part of in their own home in their own time.
And then additionally, um, you know, FD is an outliving at lifestyle. Um, so we do also provide virtual resources and content and social media, really to support participants, to adopt and continue habits and practices that drive positive health outcomes and improved quality of life. Um, and some of that includes, you know, inspiring healthful living through like cooking workshops.
We have a FD, um, cookbook as well. And then also yoga and mindfulness, online resources and classes. So essentially it's online tools and planning resources that our community can tap into it virtually to stay connected, inspired, and, and active with one another. So those are just kind of two of the major ways in which we provide that continuity and, and continued support for our community after a facilitated
program.
Well, I have to say this program sounds amazing. and I, since I learned about it, I have definitely been recommending it to all of my patients. Just like Jennifer, like you said, um, I wanna thank each of you so much for talking about this program. You each provided such valuable content and information from not only personal experience to how the program is managed and you know, all the really important details that are thought about as well as the research that backs this.
I'm just gonna go around to each of you and ask one final question. You know, if people wanna follow up on the work that you're doing, if they wanna learn more about you or, you know, kind of any, um, outside work you're doing, what would be the best way to, uh, to track kind of those, that information. So I'll start with McKenzie.
If people are interested in First Descents, where can they find out more information?
Yeah, just go to our website FirstDescents.org. If you are. You know, interested in our programs as somebody who's experienced a MS diagnosis go onto FirstDescents.org and check on our programs on our program's page.
And you can place an inquiry either yourself or your caregiver. And that's how you get started on the First Descents side of things. If you're not sure if you're like, I don't know if a program's it for me quite yet. Or like ultra said, maybe you're not quite at that right time in your life. Just check out our website.
You can also sign up for our newsletter via our website, just to kind of stay connected. And you can also follow us on various social channels, like Instagram or Facebook as well.
I know Jennifer, you mentioned that there's, um, some information about the work and advocacy that you're doing. If people wanna follow any of that, where can they find it?
So I will. Say I was fairly active on Instagram, um, when I was doing like my relay and all of that before, and then I took a hiatus during the start of the pandemic and also in this effort of being more present and kind of not wasting a lot of time on social media. Um, however, um, I am. Likely going back because there, there was a lot of, I did meet a lot of people through that who connected with me through that, um, specifically a lot of young physicians who, um, got diagnosed and were going through exactly what I was going through and it's really nice to kind of help them.
So I probably will jump back in at some point, um, because I do kind of miss that aspect of being able to kind of pay it forward and help other people through, um, through this. So my Instagram is, uh, Jennifer with two RS and the number 10 for other things. There's like I mentioned, there's that article in runner's world.
If you just kind of wanna read the story about it. Um, and other than that, um, you can reach me through kind of reaching out to Mackenzie or something like that, and they can get you my email, like specifically someone needed support in the MS, like community, just to, to kind of have someone to, to know what they're going through.
I'm always open to that.
And Tracy, if people wanna follow your research or learn more about the MS program at university of Washington, what's the best way to find you or that
program?
I would
say the best way is through our website. Um, and this provides a overview of all the work that's being done, um, in terms of our research and the websites, um, U W M S R E H A B W E L L .org.
So that's UWMSwell.org. And then we also have, uh, Twitter and a Facebook, just one other thing to compliment what McKenzie was saying about the symptom management that they do on programs. There is a website that I sometimes refer patients to called my MS. toolkit.com and that website actually uses similar strategies that Mackenzie mentioned.
And so that's, that's available for free to the.
Great recommendation. And we'll post all of that in the show notes, as well as a resource page. Once again, thank you all for your time. And I think this is gonna be a really valuable episode for people who are listening. Thank you so much for listening and we look forward to you joining us in the next episode, make sure to subscribe, to be alerted when new episodes launch, if you would like continuing education credits for listening to this episode, please head over to find empathy.com/learn.
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