Megan’s Story

Meet Megan! Megan was diagnosed with Cerebral Amyloid Angiopathy - Related Inflammation in February 2024. In her words:

“I don't believe there is any aspect of my life that hasn't been impacted by my diagnosis! Daily tasks, chores/errands, the ability to keep up our home, relationships, and work...they've all had to change. I can no longer work, nor can I be the contributing member of the household that I used to be. It has been a real journey of loss and acceptance, but I am learning to adjust how I contribute, as well as pace myself so that I can still be productive in some sense and also enjoy life.

I thankfully came across Outdoor Mindset in one of my endless online research pursuits. This organization is the only place out there that speaks directly to the neurological population in the outdoor space. The people, like me, who love being active in the outdoors are starving for ways to prevent yet another loss in our lives.

For those folks who haven't experienced what being in nature can do for the mind, body, and spirit, Outdoor Mindset has the potential to impact lives in enormous ways. Connection to the outdoors is not just a luxury for people with neurological conditions...it can literally improve the condition itself.”

Thank million times over, thank you for sharing your story, Megan!

Want to share your experiences? You can do so anytime here

Alyssa’s Adventure - OM Scholarships

I’ve been a member of Outdoor Mindset since 2013 when I moved to Colorado to continue rehabilitation from a brain injury. I’ve always appreciated that OM has less of a focus on the problems of neurological challenge and more of a focus on the adventures ahead. Our tag line should read “I have a brain challenge, you have a brain challenge…so what…let’s climb a mountain.”  I’ve found a community of people who understand neurological challenge but who refuse to let the challenges define the ability to adventure well. These are my kind of people and I’m so thankful for the community and the Outdoor Mindset!

My neurologist said that if you get a traumatic brain injury, you have a higher likelihood of getting future concussions. Each time the symptoms seem to get a little worse. I’ve had a bunch of concussions since the first TBI. In fact, I fell off of a ladder in September  and got a concussion that led to a pretty significant downward spiral. I knew I needed something really fun, an adventure to get excited about, something to help me put one foot in front of the other again. So, I applied for an adventure scholarship and about a week later I found out I had gotten the scholarship and started planning and dreaming and getting excited about the adventure ahead.

I’ve always enjoyed being near water and I’ve wanted to go on a fly fishing adventure for years though I’ve never been on a float trip before and my fly fishing skills were questionable at best. I decided that the scholarship was the perfect opportunity to learn to fly fish on a fully supported fly fishing float trip with my dad. We traveled four hours to Casper Wyoming to connect with our guide (the owner of Wyoming Fly Fishing and the Platte River Fly Shop) for a full day on the river. 

Our guide was incredibly patient and taught me the art of fly casting and I caught my first fish within five minutes of starting the trip. I started smiling and didn’t stop the entire day. We then caught 19 fish in 8 hours of fishing. I also caught a couple of rocks, a branch and the guide (several times). He refused to give up on me and showed me over and over how to read the river, and the bugs in the river and how to cast and even when I caught him, he just kindly unhooked himself and told me how to cast away from the boat. He told hilarious stories and pointed out wildlife (deer, ospray, and cows) along the way. He had an uncanny knowledge of the river and knew exactly where the fish hung out. He would bring the raft right over to the fishing hole so that I would drop the fly almost on top of the fish and then he would help me pull the caught fish onto the boat for a name, a picture, and a celebration before we’d release them back to the river to keep swimming.

I couldn’t help but think of the adventure as an allegory of brain injury. Sometimes having an injury makes you feel like a fish out of the water…struggling to move forward, struggling to survive. But, every time we unhooked the fish and it swam off it was a picture of resilience of overcoming a challenge and refusing to give up which is exactly what we have to do to thrive after an injury. This adventure was a life highlight for sure, and one I never want to forget. I’m incredibly thankful for the chance to learn a new skill from our fantastic guide, connect with my dad, smile for 8 hours straight, and catch so many fish!

Being Your Own Superstar

In golf, it’s called a handicap. We all have one. The parents we were born with, Bad things that have happened to us. Poverty. Illness. Bad decisions that weren’t really our fault. Any life condition(s) that make it difficult, if not impossible, to be the best at something. And yet you can still be the best (whether or not that means being better than everyone else). I think that we see/judge ourselves through the lenses of our friends, people we’re connected to, more so than through the lens of the universe, which is a more objective lens. Only we know exactly what it is like to have whatever handicap or handicaps we have, and what is in the realm of possibility, much less greatness, in light of it/them. The best human in the world could be someone nobody has ever even noticed. He/She may or may not have battled cancer, may or may not be a fantastic athlete, may or may not have a 130 IQ, etc. Just as having had a serious illness or illnesses doesn’t automatically make one a superstar, achieving great monetary success likewise doesn’t automatically make one one.

All of us in OM have a challenge we have dealt with/are dealing with, but the conditions we have are so particular and so varied that it can be difficult to see what really connects us. I think what getting outside (having an outdoor mindset) means for me is learning how to handicap myself, how to adapt my goals to fit my situation, and how to set myself up for success, as defined by my ability to meet those goals. I would say that there is nothing wrong, for instance, with giving up a thing or things, not because they’re too hard or because we can’t do them, but because they may be part of our old path, instead of the one we are now on.

When the dust settled over my life recently, I realized that the essence of everything I’ve ever done is sort of all one thing. I don’t need to play the guitar, shoot an 80 in golf, even walk at a certain pace when I go to the store (all things that a brain tumor compromised), because what I do do, which a lot of times isn’t the thing itself, but how I do it, keeps me moving forward – forward on my new path, which is as fruitful and as interesting as I can make it. I was an athlete, first and foremost, in my younger years. Circumstances forced me to pursue other things, as early as college. In my twenties and thirties, Bipolar Disorder forced me (or helped me, depending on how you look at it) to pursue art (writing, painting, music, and more than anything, as a way of life – eg. Creativity in taking care of myself). The brain tumor I had removed 3 years ago was and wasn’t a big deal for me, because I had learned by then how to take whatever life gives me. So this is what I focus on - challenging myself in a way that feels good, like getting outside, or doing other things I like or love, but also realizing that I am still only maybe halfway along the journey from my surgery 3 years ago to discovering what new activities there are to become passionate about, and new ways of doing them.

Eric Cooney has been an OM member since 2016. He is a writer and visual artist living in Boulder, Colorado.

'Pity party, take a seat... I got 50k to ski'

Amy rockin’ the 2019 Birkebeiner in Hayward Wisconsin.

Most days I feel like a “normal person” but sitting at my annual neurology appointment yesterday, I remembered that in fact I was not entirely “normal.”

After my appointments I like to spend the rest of the day by myself either barricaded in my house or going on a run with a dog.  Yesterday, I chose the barricade in my house option because the weather was particularly gross and a nap with my pup sounded like a really good alternative.  As I settled into my little pity party for one and a nap, I reflected on my life and realized that I should really just stop. I had just done a 50k ski race in February and that is something that not every epileptic could do.

A little more about me will give you some context as to my inclination towards an annual pity party.  I was diagnosed with epilepsy when I was 22 and working on a ranch in Jackson, WY. I won’t bore you with all the details but needless to say, suddenly having your driver’s license revoked and watching those around you look at you as if you might break at any moment was enough to throw off any independence I felt.  After years of stubbornly remaining out west where the medical care was dubious, I moved back to NH. Despite growing up here, I knew no one and I certainly did not know anyone else with a condition like mine. Enter Outdoor Mindset!

My very first experience with OM was doing a 5k running race on Mother’s Day in 2013.  It was the first time I met someone with epilepsy! I had someone to compare notes with!  Someone who took the same drugs I did! I have never been more excited about someone else having epilepsy as I was in that moment.  I spent the entire run talking with Jake Quigley who ran the OM chapter in Hanover, NH.

Now, for the star of this post-The American Birkebeiner.  Every year in Cable and Hayward, WI a cross country ski race takes place.  The main even is 50k long or 31mi for those of you not into the metric system, and it attracts thousands of skiers from all over the world.  I took on the challenge in 2018 as a life bucket list item and had a pretty good time. It was certainly hard but not impossible and I felt pretty good about myself afterwards. For months I had spent each day either running, biking, roller skiing, hiking or skiing on snow.  I love to do all of those things so training didn’t always feel like training. That being said there where days I had to drag myself out the door. Finding the mental motivation after a long day of work could be a real challenge. When I finally finished the race I remember crying as soon as I saw my friend who had also raced that day and finished ahead of me.  I was so overwhelmed with the elation of finishing and knowing that all the hard work had finally paid off. I knew that I wanted to do it again in 2019 but was having a hard time finding the motivation to put myself through hours of roller skiing and running again. I got talking to Jake and came up with the idea of doing it as a fundraiser for OM. Jake and his wife Jeanie had done numerous bike races and rides for Outdoor Mindset so it seemed like a good example to follow!  

I am not going to lie-skiing 50k is hard.  It is defeating. It is taxing on the body not only because of the distance and discipline (I did it on skate skis) but also because it is cold.  However, it is also really rewarding to know that as I was skiing along or slogging up a hill that I was lucky to be doing something that many people with neurological diagnosis are simply not able to do.  When things got hard I would just have a little conversation with myself. “Hey, self, get it together. You are doing this for other people. Who cares if your legs feel like concrete?! You have worked hard for this independence and ability and other people are not so lucky.  So, get it in gear and finish.” I honestly said those words in my head. Anyone who has ever done any race of any kind, especially a xc ski race, knows that you can physically prepare as much as you want but at the end of the day, if your head is not in it, it is going to be a painful experience.

There were many parts of the trail where I just thought about how lucky I was.  All I have to do is take a pill 2x a day. I skied along some early flat spaces in the trail and had a moment with myself where I reflected on other people’s efforts when we take OM members out on adventures.  For some folks, an hour drive to get to a meet up activity alone is incredibly taxing! For others the heat of a midsummer hike can be all but debilitating. Surely, if they could overcome those obstacles to maintain their outdoor lifestyles, I could manage 50k.  And I did! I finished! The new snow that fell a few days beforehand slowed everyone down so times were much longer than the previous year (including mine), but I didn’t care. I had just raised money for a non-profit that had helped me over the last five years and hopefully showed people that having problems with your head is maybe not always the obstacle we think it is.

For anyone feeling like they are attending their own pity party, I highly suggest reaching out to Outdoor Mindset.  You can still have a pity party if that is on your agenda, but now you will be able to have a conversation at your party and the venue will most likely be somewhere outside rather than your couch.  You can talk about spinal taps, meds, CAT scans, MRIs, EEGs and no one will look at you funny! You can lose your balance while on a climbing adventure and no one will think less of you! It is incredibly liberating to be around other people who share some or all of your challenges.  Not only is it liberating, but you get to be outside! Being able to maintain my active and outdoor centered life was the most important thing to me after being diagnosed. I felt like this new found love of mine was being ripped away and I was pretty mad at the world for a time. In 2011, during one particularly dark time in my epilepsy journey, my sister got married.  I remember having a hard time being gracious and engaged because I was so angry at my diagnosis. I missed events due to med problems, which made me resentful. I look back now and realize that finding OM earlier would have alleviated some of that anger. OM helped me get out of that funk in 2013 and I met some sweet peeps along the way! OM allows me the freedom to talk to others in my same boat, learn strategies for shared struggles and return to other parts of my life with grace and energy.

Amy Franklin lives in Plainfield New Hampshire. She is the Ambassador for the Vermont/NewHampshire Outdoor Mindset meet up chapter. Amy also is a high school nordic ski coach and owns her own gardening business.

Adventures With The Head Case Club

Ten percent of Americans live with an invisible disability. Some of us are beyond stubborn about it. As one of 525 members of the Outdoor Mindset group, I place myself in this subset. To join, you or your partner must have a head case – a neurological disorder. For Kyle, the Colorado-based founder of the organization, a hell of a headache led to getting diagnosed with an inoperable brain tumor. For my recruiter Becky, it began with sporadic foot drop and a feeling of being off-balance. Vice President Jake had his first epileptic seizure when he was 11. Local chapter leader Amy also has epilepsy – and is still prone to seizures if she forgets to take her medication, goes indoors and allows herself to relax. Group member Rosie has a dual diagnosis: she has the incurable and rare Charcot-Marie-Tooth disease – and a Chronic Inflammatory Demyelinating Polyneuropathy. When Rosie was first diagnosed, she couldn’t pull up her own zipper. While she has good and bad days, she has since climbed Mt. Kilimanjaro (elevation 19,341).

Rosie’s feats are not unusual for Outdoor Mindset members. In the five years since I joined, I’ve watched Jake complete marathon on and off-road bike trips. Amy and Jake’s wife Jeanie have done crazy long Nordic ski races. I’ve seen Becky emerge from Body Combat classes only to hit the weights or climb the rock wall at our gym. My efforts pale by comparison: I swim. I walk a minimum of a mile and a half daily. I sporadically take yoga classes. Last year, I completed a three-day 50-mile fundraising walk in Cape Cod. On the second day, I swapped a 10-mile return on a round-trip route for lunch in Provincetown and a walk on the beach. It was Donna, a fellow walker – not my feet – that prompted the break. She reminded me that “we are here to have fun, too.”

Ever heard that Lao Tzu quote that a “journey of a thousand miles begins with a single step?” The journey to membership in Outdoor Mindset can start at any age – as long as you or your partner have a diagnosis. Even if you’re not eligible now, you may be later. The Outdoor Mindset website shares the stats.

Each year in the United States:

• Over 100,000 people are diagnosed with a primary or metastatic Brain Tumor

• 181,000 people are diagnosed with Epilepsy

• 10,400 people are diagnosed with Multiple Sclerosis (MS)

• 50,000 people are diagnosed with Parkinson’s disease

• 1.7 million people sustain a traumatic brain injury

As my colleague Larissa Hopkins says, “We are all temporarily abled.”

I became eligible for Outdoor Mindset membership in May 2013. Unbeknownst to me, I had been living with a progressive neurological condition. The first signs came when I lost peripheral vision in my left eye in 2007: Cars visible in my rear-view mirror did not show up on my side mirror as they passed. My vision returned three days after an Optometrist diagnosed it in a word – stress.

Six years later, I experienced bilateral feet tingling, cognitive fog, and numbness. Over three weeks, my symptoms intensified to the point that I could not feel if I had a shoe on my foot or not. After three MRIs and a spinal tap, the initial vision loss was deemed as optic neuritis – a frequent harbinger of Multiple Sclerosis (MS). The MS diagnosis was confirmed by MRI results showing old and new lesions in my brain and one on my spine. I was left with minor nerve damage, but the cog fog dissipated.

I was waiting in my Neurologist’s lobby when Becky recruited me for Outdoor Mindset. At the time, she was a warm acquaintance. I was three weeks out from the same diagnosis she’d been given a year before. At the Neurologist’s office, I received a brochure that included a subtitle that read “MS can stop people from walking,” Becky was having none of it. She made a date for me to join her at the next MS Support Group meeting – and then, the following winter – she convinced me to go for an overnight Outdoor Mindset trip at the Dartmouth College Class of 66 cabin.
We made the trip in January. The temperatures were in the teens. There was a fresh layer of snow on the ground with ice underneath. We parked .6 miles from the cabin and brought in all of our supplies. With the exception of the kitchen sink, there is no indoor plumbing at the cabin. An outhouse in the woods serves as the facility’s only official bathroom. We unpacked and then went out for a hike up Moose Mountain. Borrowing one of Jake’s MICROspikes, I lagged behind the group wearing rain boots with slick soles. Becky, Jake, Jeanie, Rosie and Jeanie’s friend Katie cheered me on as we opted for the more challenging path to the top. As we hiked, I got sporadically wobbly until we reached the summit (’2303 feet). I told the same joke I always do when my balance is off: “Have you heard about the woman with MS who walked into a bar, then into a table and a chair?”

Smores!! What else is there during a winter cabin trip!?

Rosie and I slept up in sleeping bags at the top of a loft. With a small flashlight, I felt my way down a ladder at 3 am, put on slippers and made my way to the outhouse. As I climbed back to my bed, I could feel tears form in the corners of my eyes. I was going to be okay.

Since that night, there have been many more Outdoor Mindset trips – from winter cross-country skiing and spring mud hikes to summer paddle boarding outings and fall corn mazes. I have overcome my fear of needles and now give myself bi-weekly shots. While MS is an unpredictable disease, I have been told I have the relapsing-remitting kind for now – and I’ve had no new surprises in MRI results. To date, I have been unusually lucky.

On our most recent camping trip in late April, I fell while crossing a log bridge and broke the ice over a stream. I drifted for about two feet. There was still snow on the ground. We laughed, and I soon changed into warmer clothes. Hypothermia risk averted. No incident management report required.

When you receive a diagnosis that there’s something wrong with your head, the news is often followed with precautions. Epilepsy seizures lead to driving restrictions. Traumatic brain injury survivors are told to avoid sunlight. The National Multiple Sclerosis Society urges a conservative approach, “Any person with MS who is initiating a new exercise program should also consult with a physician before starting. Periods of exercise should be carefully timed to avoid the hotter periods of the day and prevent excessive fatigue.”

My Outdoor Mindset friends and I fly in the face of this advice. Our brains may be suboptimal in places, but we keep moving. We take our medication as prescribed, but we don’t sit back. It is okay to be impatient and to push yourself. After all, the definition of patient is to be passive:

Patient [prescient]
noun

1. a person who is under medical care or treatment.

2. a person or thing that undergoes some action

3. Archaic. a sufferer or victim

My team members and I don’t stand by waiting to “undergo some action.” For now, we are fortunate to be well enough to venture out on our own terms. As Amy says, “When you have a disease or a neurological disorder, you can handle yourself. It is everyone around you (including family and friends) that can be the stressful component of that diagnosis.” Outdoor Mindset lets us take a break from all of that. When we are together, we share experiences. We do not treat ourselves as if we are fragile. We keep moving – as if we can’t be stopped.  

Chandlee Bryan has been an Outdoor Mindset member since 2013, and is active with the Vermont/ New Hampshire chapter. She holds a Masters in Education, is an undergraduate career advisor by day, and writer of narrative non-fiction at night. You can connect with @chandlee on Twitter.

Adventure Scholarship Report- Ice Climbing with Katrina Toucke

We are so excited to share this story with you. It truly exemplifies what our Adventure Scholarship program is all about. The meaningful experiences shared by OM members help transform how people perceive their neurological challenges, and find ways to overcome them. Our hope is to grow our outdoor-focused community full of shared experiences just like this!

I had so many physical challenges that accompanied my diagnosis of MS in 2011, which left me without a lot of hope for the future. One afternoon while dreaming of hiking (something I no longer could do) I ran across the nonprofit Outdoor Mindset (OM). This organization gave me hope! Their mission was to unite and empower people affected by neurological challenges through a common passion of the outdoors. People just like me! This was not the sedentary support group that I was used to.  These were people that wanted to keep experiencing nature and activities while being part of a supportive community. I have remained active with this organization since 2012.  When I moved to Ouray in October 2018, I contacted them to see if I could start a OM group here in Ouray County. Shortly thereafter, a new meet up group was born!

As people I met in Ouray realized I was reinventing my life from a disabling relapse of MS, they encouraged me to check out a cool organization called Paradox Sports in Boulder, which organizes an annual adaptive climbing program here in Ouray! The program started for amputees, but expanded to other diagnosis and challenges. I am normally afraid of heights, but since my disabling relapse and medications my attitude has changed to “FEEL THE FEAR AND DO IT ANYWAYS”!  Although I was excited at the opportunity, various circumstances limited my budget! I learned that OM had an Adventure Scholarship program, which allows members to identify empowering outdoor opportunities, and request scholarship funding to pursue them. I applied, and was fortunate to receive funding to participate in the upcoming Paradox Sports Ice Climbing event.

The weekend event began at a hotel, where we received our schedule for the weekend, and a briefing of what we were in store for.  I was nervous not knowing anyone and being new to ice climbing, but excited for the experience. Paradox Sports welcomed me, and provided me climbing gear. Many participants had been coming year after year for this event. Despite our challenges (amputee, blindness, deafness, MS, Seizures) we all were excited to feel the fear and DO IT ANYWAY! Outside a storm moved in, blanketing Ouray with fresh snow.

We met the next morning at a local coffee shop for breakfast and drove to the trail head. It was cold and snowing, but that didn’t dampen the spirit. I was told to bring a back pack that could fit all my climbing gear plus warm clothes and a thermos with hot water to stay hydrated.  I swear my pack weighed at least 30 lbs! I soon realized this was a MISTAKE.

The guides helped me as I struggled through 1.5 miles in the snow. Easy is not always rewarding, but I didn’t really think ahead. We were hiking on the perimeter trail, up above the canyon in which we would climb. The technical descent was anchored with ropes to support us as we dropped into the canyon. The Paradox crew had set up warming tents, snacks and water! I admit this was extremely challenging for me, despite my regular hiking since October. The other participants facing their own challenges inspired me. We were all one TRIBE helping each other out this weekend!

Many world-renowned ice climbers had come to teach and guide us all. IT WAS JUST SO COOL TO SEE! We all looked like ants climbing the huge icicles that clung to the cliff walls.  As I watched in awe, my name was called. “Katrina, are you ready?” EEEK…..my adrenaline rushed. Yet, I had no fear, just total excitement for this new experience. I unfortunately (due to short term memory issues) can not remember names, but my guide was AMAZING!  He was kind, patient and funny! I was taught the technique of ‘kick, kick, swing, pull, and squat’. Of course, this new movement took some practice. My being tired from the hike was quickly forgotten as I climbed higher and higher. THEN THE BURN CAME!!! Hanging off the huge icicles caused intense burning in my feet and legs.  My guide laughed and made jokes to take my mind off it. I later learned I was experiencing what climbers call ‘screaming barfies’.

As I hung in the air high above, my guide suggested “plant your heals, stretch your legs, lean back and take in the beauty of it all”.  Down below my belayer and campers looked so small! The canyon was filled with ice formations and other climbers, and the sun poked out making everything glisten and sparkle.  THIS WAS INCREDIBLE!!!! I wished I had my phone for pictures, but didn’t dare. Even though I have short term memory loss, (names and such) I will never forget this amazing experience!  

After a pause, I continued to the top of the canyon wall. I screamed down to my guide who stayed attentive to me hanging on the huge icicles. At my request, he belayed me back down to the valley floor. When I had rock climbed, this was always my favorite, although some people hate it.  Being lowered takes a lot of trust in others. Are they paying attention to catch me if I jump out and fall too quickly? This was a huge lesson for me, as in my past I lost a lot of trust in people. Later that evening at the hotel I visited with participants and listened to their experiences.  I knew somehow this would end up being a sport I would enjoy year after year! I love the combination of pushing myself physically and mentally to reach new heights!  

The next morning I made sure to pack much less gear, which made the hike way easier! The rope climbing into the canyon was fun too. It was a shorter day of climbing. We were scheduled to hit the hot springs that afternoon, which I opted out of due to my MS symptoms. I did enjoy further conversation with other participants. While we each had our own physical and emotional challenges, the common thread between us was to have the best experiences with our own lives!

Driving home, I felt so blessed.  I had just met the most amazing angels, each overcoming their own challenges. Spending a weekend physically and mentally pushing myself with others was a once in a life time experience. I will climb again, and the camaraderie I felt that weekend was a true gift never to be forgotten.