New Member, Katie McCurdy, Attends Hut Trip & Tells All

Katie McCurdy is a new Outdoor Mindset member, who recently attended the NH Meetup hut trip. She enjoyed meeting new people, talking about neurological challenges, and spending time in the outdoors! We appreciate Katie sharing her experiences.

We made our way along a snowy trail in the woods of New Hampshire, a small train of 6 backpack-toting, sled-pulling women (and one man). The area was still recovering from an ice storm, so beneath the inch or so of snow was a thin layer of glare ice, which we navigated and slid along until we reached the ’66 Dartmouth cabin. The log cabin was more like a lodge; what I imagine an old logging camp in Northern Michigan (from where I hail) would have been like. It had a giant main room with a wood stove and fireplace; multiple sleeping lofts piled with those humorous vinyl-coated camp mattresses; gas lanterns and moose paddles hanging throughout. It was rustic and charming. 

My companions were a group of mostly strangers, members of the Outdoor Mindset community in the Hanover, NH area. Outdoor Mindset’s goal is to help patients with neurological conditions spend time in the outdoors, doing activities they love. My old friend Jeanie had invited me to the outing; we’d been co-captains of our college ski team back in the 90’s, and Jeanie’s now in med school at Dartmouth. Her husband, Jake, is a co-founder of Outdoor Mindset. 

Most of the people on the outing were patients with various neurological conditions like MS and epilepsy, and one woman had multiple autoimmune issues (like I do, but hers were different from mine.) I don’t think they knew I was a patient at first, as I was kind of a random and unexpected addition to the trip, so my pointed questions about their symptoms and diseases might have been a little off-putting at first. But as we walked through the woods, first on our way to the cabin and then from the cabin to the top of a small mountain lookout nearby, we spent a lot of time talking and getting to know each other. I found that many of us had symptoms in common - even if our diseases were different. A lot of us talked about neuropathy - tingling and numbness in our extremities. The conversation swung seamlessly between health talk and outdoors talk; from the cost of healthcare to a hiking trip at Kilimanjaro; from treatment options to a climbing trip or a trek through the Indian Himalayas. 

Now these are my kind of people! Maybe just a ‘little tiny bit’ noncompliant patients who don’t always accept the limitations of their diseases. Who push themselves to spend time outdoors and find ways to mitigate the impact their symptoms might have on their abilities. I’ve had the autoimmune disease Myasthenia Gravis for over 20 years, and I’ve recently been diagnosed with Sjogren’s Syndrome as well - both neurological autoimmune diseases. But I’ve always been able to maintain an outdoor lifestyle; I was a ski bum in Montana for a few years, and I’ve lived/hiked/skied in VT for about 8 years. I understand what it’s like to push through symptoms to get outdoors and keep up with the activities that make you feel alive.

Later in the evening, a friend of Jeanie and Jake’s came to the cabin and taught an intro class on Pilates. She was hilarious and a great teacher, and we worked on our ‘six packs.’ Jeanie and the dinner crew made a great meal, and we spent time chatting into the night over a shared bottle of wine and some cream cheese brownies. I shared a personal project I’ve been working on that aims to help patients tell better stories about their healthcare when they’re visiting with their doctors, and I got some good feedback and input from the group. 

Overall, I was so pleased to have the chance to refresh my mind and body in the woods with some like-minded patients. I’m excited to have now joined OM officially, and I’m hoping to make it to more events and to help spread the word up here in VT!

Outdoor Mindset teams up with Bones For Bruno in February!

What could be better than treats that help animals and their human friends? 

Outdoor Mindset is excited to team up with Bones for Bruno. Bones for Bruno hand makes gluten free treats sure to delight dogs of all shapes and sizes. Their mission is simple: Love life while helping people, their pets and their community.

Here's the deal. For the entire month of February, buy a bag of Bones for Bruno treats, and Bones for Bruno will donate a portion of the proceeds to the Collarship fund AND Outdoor Mindset! 

• Collarships provide financial assistance to those in need of paying veterinary bills for their furry friends.

• Outdoor Mindset unites and empowers people affected by neurological challenges through a common passion for the outdoors.

Dogs love the outdoors, so this is really just a match made in outdoorsy heaven.

Wanna know how you and your pooch can make a difference? It's easy.
During the month of February, buy a delicious bag of doggie treats (or two, or three) here, and enjoy the benefits of helping people, pets, and your community!

Outdoor Mindset Announces Partnership with NMSS CO-WY Chapter

Outdoor Mindset announces new partnership for 2014 with National MS Society CO-WY Chapter.

The National MS Society CO-WY Chapter mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. The Colorado-Wyoming Chapter of the National MS Society has been serving individuals diagnosed with MS and their families for over 75 combined years. They are committed to providing education, programs and services that empower you to live a healthy productive life. To learn more, visit their website.Outdoor Mindset unites and empowers people affected by neurological challenges through a common passion for the outdoors. OM enhances members' quality of life through Meetup Groups and the Connect Program.

Meetup Groups strengthen connections and empower members to get outside with scheduled group activities in local cities around the country. The Connect Program allows members to search other members and connect 1 to 1 with another member who has experience with a similar diagnosis and shares a common passion for the outdoors. These relationships inspire hope, instill passion for maintaining outdoor lives and enable our members to receive support from someone uniquely familiar with their experience. You may sign up for Outdoor Mindset's free membership community on their website. In addition to gaining access to empowering programs, members also have access to online-based tools, member perks, and exclusive giveaways. 

Outdoor Mindset looks forward to partnering with the National MS Society CO-WY Chapter in many exciting ways in 2014. Look for an Outdoor Mindset presence at future Walk MS events. Outdoor Mindset plans to set up informational booths for walk participants. Also OM will encourage local Meetup Groups to get outside and attend Walk MS events. To view upcoming dates and to register for Walk MS events, head to the website. Boulder OMbassador, Kat Drake, has set up a team called "Mountain Strong" for the Boulder Walk on May 17th. If you would like to join the team and participate with the Boulder Meetup Group, please check the OM calendar and/or contact Kat for details: 970-231-7980.

This partnership is a win-win for both organizations. With complimentary missions to empower people to live a healthy and productive lives, the National MS Society CO-WY Chapter and Outdoor Mindset look forward to working together and raising awareness on behalf of each other.

Meet Eric Cobb - living life to the fullest in Orange County, CA

OM Member, Eric Cobb, shares his story for the first time. His positive outlook on life and resilience in dealing with his diagnosis is truly inspirational. From racing BMX in Arizona to embracing long Colorado winters to coming face to face with a 10 ft seal in California, Eric is a living example of how to live life to the fullest no matter your circumstances.

My story with epilepsy begins when I was at school in the seventh grade.

I was reading a book in class, and went into a grand mal seizure while I was reading.

I was not born with it, or experienced it at a very young age, so I was completely lost.

I had my second seizure a year later, and that was when I went on medications, and began testing to see what was happening with me.

It took about a year and a multitude of tests to come to the conclusion that I am an epileptic.

I had moved to Colorado from Arizona a few months before I had my first seizure, and it goes without saying I was not a winter sports fan.

I grew up racing BMX, and riding jet skis due to the decent to incredibly hot weather that permitted me to do so.

I would spend a lot of time in my dad’s garage building old cars, and star gazing in the evenings after a good game of hide and seek with neighborhood kids after Christmas dinner.

I spent all of my time outside doing anything I wanted…

Let’s fast forward to my move to the mountains, and my complications.

I didn’t know how to feel after the seizure, or the cold place I had moved to where my bike sat in storage, and no local race track to ride on, and an oversized ice rink for a lake.

I became angry at times, sad at others due to both the illness and the place I was, that I shut down.

However when summer came around and I could see that there was more to the world than dirt and pavement, I began my love affair with Colorado, and how everything else on my shoulders no longer mattered.

There were giants made of solid rock for me to climb, raging angry rivers made from the melting snow  atop the giant peeks that spread like veins across the land. 

It was unlike anything I had ever seen before coming from a hot flat desert.

I put my winter time video games away (due to my distaste for snow), and took full advantage of the playground that lay before me.

Though all of the summer activities were magnificent, I still had hatred for the long cold winter that followed me all the way through high school.

I had later made friends that were really into snowboarding, and would taunt me a lot because I would always stay inside and sulk about the cold, and that because of my diagnosis I couldn’t go party at the bar because I couldn’t drink, and the flashing lights that I would feel alone.

Eventually I had enough, and I finally saw the playground that Colorado transformed into during the winter that I began to go snowboarding.

I was scared of falling off the lift, or hitting a tree, but I grew confident, and knew in myself that I didn’t want to be alone and hat nothing would stand in my way.

I felt complete…

I joined Outdoor Mindset in the summer of 2011 as a mentor excited about the opportunity to work with people going through the same struggles as I had.

I went several years without incident, but nothing lasts forever.

My medications were causing me to have liver failure, and I had to make a change, which caused me to have to spend a lot of time on myself.

After about a year I had a seizure on my way to work in December of 2011, and crashed my car through a small cinderblock wall, and wooden fence.

I picked myself up, and pulled the car into the garage to start the rebuild on it right away.

Again I wasn’t going to let anything stand in my way.

Now my seizure patterns were not even close to being as bad as most with maybe an episode every three years, due to my own faults not paying attention to my medication intake.

In December 2011, I had three seizures, one including the car accident, and it totally blindsided me.

I again was confused not knowing entirely what was happening; my new medication had negative effects on my moods, and would cause me to be very angry at times.

All of this confusion and anger mixed together caused me to draw the shades again.

It took about a month to get me on the right medication, and things began to look up.

No more wild mood swings, and I got back onto the path that I had been on for so many years.

I moved to California in October of 2012 and have been working with Outdoor Mindset to get things going in Orange County where I currently reside.

I had a seizure in early 2013, and continued with my positive outlook, and feel that I never even missed a step.

I try to get to the beach as often as I can to boogie board, and surf.

It has been awesome; I had a ten foot seal swim up to me one day!

I was scared for sure, but what an experience!

We just got done with a hike to the Hollywood sign in L.A. a few weeks ago.

I am thankful for all of the people in my life that pushed me (even the friends that taunted me) to experience life to the fullest, and not let anything get in my way, and that includes myself, and the way I handled things.

I am thankful to Outdoor Mindset for the mission to help us live for the best.

Even through my worst a few years ago, I remembered the motto and the commitments I made to the organization.

Without them I would still be playing video games…

Thank you,

Eric Cobb

Brad Rinehart on the Rock 'N' Roll Marathon

OM partner, Seize The World submitted this story for the OM Blog. Thank you, Seize the World for sharing and building awareness.

This month, Seize The World veteran and endurance athlete Brad Rinehart took some time to speak about a recent milestone: completing the Denver Rock ‘n’ Roll Marathon.  In order to prepare, Brad worked closely with team coach (and STW Development Director) Charles Koller.  Part of that training even involved an epic climb of the 14,036 foot Mt. Sherman in August, together with John Olson and 

Colorado Climbers for Epilepsy Awareness

 as well as 

Outdoor Mindset

 and Seize The World.  Brad lives with his wife Tracy in Aurora, CO.  Together, they are an amazing couple: outgoing and kind, but also undaunted by the challenges of epilepsy.

This interview is from a phone conversation with Brad last week about his recent adventures and accomplishments.

Brad Rinehart crossing the finish line of the Denver Rock ‘n’ Roll Marathon. Completing a marathon had been a long-term goal for Brad. He experienced three seizures on the morning of the race.  (Photo by Ian McKittrick)

Why did you decide to run the Rock ‘n’ Roll Marathon? 

It’s really easy, you do everything: you do a 5k, you a 10k, you kinda do them all, right?  I guess as a runner you want to finish off your big long run eventually, you want to complete the cycle.  I always said, eventually I want to do a full marathon.  And I said ‘this is the perfect opportunity.”

With the Rock ‘n’ Roll Marathon in Denver you mean? 

Yes, and I had so much support—I could not have made it through the whole marathon without my coach, Charles, I could not have made it through without his help.  And doing it with Seize The World, they really helped me out.  This was just the perfect opportunity to do the full marathon.  I would never have done the full marathon by myself, you know what I mean? It was basically right in the back yard too.

What were some of the challenges you faced in preparing? 

Well, I said to Charles, “Ok, I guess I am going to run the full marathon.”  And that (26.1 miles) was just a big number.  It was a big number in itself.  And I just kept telling myself, “I’m going to do this.”

Brad Rinehart running with Charles Koller on 17th st. in the Rock ‘n’ Roll Marathon. Charles helped Brad with training and preparation for the marathon.

What was your training plan?  

Just about every other day I would take my dog and then run a little bit and then walk a little bit.  Each day I would try to build up my mileage.  You know what it’s like: You have your bad days, you have to push up your mileage.  I still kept thinking: “Am I going to make this thing?”  There was always that.

Were there any moments when you thought to yourself, “what am I doing here?”

On race day, I had three seizures. (Brad had two seizures between 2a.m. and 5a.m. on race day, and a third at 6:00a.m. after meeting up with the team. The marathon began at 7:30 or so.) Then I just said, “Ok it’s just like a normal day.”  I just knew that I wanted to finish, it was just kind of the “game on” kind of attitude though. And I wanted to finish.  The other thing with the marathon was doing the hike up Mt. Sherman with John Olson and Colorado Climbers for Epilepsy and also the support of 

Outdoor Mindset

. I don’t think I would have ever done that without them.

What was that climb like?

If you could imagine just about a trillion ball bearings or marbles, and if you tried to walk up. No matter where you walked, there is no way you could try to keep your balance.  And here are these rocks that have been here for like trillions of years.  (Brad is describing the infamous scree fields on Mt. Sherman’s West Slopes and SW Ridge.  At one point, he scraped his knees during the hike before borrowing a set of trekking poles to help with balance on the descent).

I think I left a nice trail of blood on the side of the rock…you know, basically, I can laugh at it now, but you know by the time I came all the way down, you could see the parking lot, there was all these rocks you had to go across, but let me tell you, trying to walk across all these boulders, trying to go from one rock to the other, it’s not easy.  It was an epic adventure.

Brad Rinehart and Charles Koller atop 14,036ft. Mt. Sherman. The annual climb is organized by John Olson and Colorado Climbers for Epilepsy Awareness.

Did you think about the Mt. Sherman climb while you were running the marathon?

Climbing that, and knowing that I could do that, absolutely pushed me forward for the marathon. I was telling Charles, I was only hoping to make it in 6 hours, but Charles told me I finished in 5 hours and 56 minutes, I still just couldn’t believe I actually finished the thing in that amount of time.

How did your neurologist react to news of the marathon?

I took my medal to show my neurologist and she was really impressed by that.

What do you think about the 

recent news

 with Neuropace and the FDA?

I was really excited to see that thing getting approved, that is really a big deal, I think it is a really big notch. I was one of the first to start off with this [treatment].

Do you have any advice for people trying to find a safer or easier way through life with epilepsy?

No, but I guess you could say it this way: everybody has their bad days  and everybody has their good days.  One week I could have a perfect week, and the next day I could have a horrible seizure.  You just don’t know.  You just don’t know.  I don’t think there is an answer.

Right now there is no cure for epilepsy.  There isn’t.  As much as I would like for there to be…if we did, you and I would both be billionaires, wouldn’t we?  That’s just…I don’t…we don’t have the answer. Your friends are your safety valves, I guess.

And I know Tracy says a lot of the time when I have a breakthrough [seizure], I have to sleep. Sometimes my seizures just last about 30 seconds and that’s it.  Sometimes I’ll just have confusion, and I’ll sit down and that’s the end of it. Everybody has a different trigger and a different cure for their stress. I run, because that’s what cures my stress.

Susan Mollohan isn’t Taking Parkinson’s Lying Down

Participating in clinical trials is one of many ways to stay active in the pursuit of a cure for neurological disorders, such as Parkinson’s disease. In this post, shared by The Michael J. Fox Foundation, Susan Mollohan shares how she combines her love for exercise and determination to participate in the pursuit of a cure for Parkinson’s disease by participating in clinical trials. For more information about participating in clinical trials, visit

www.michaeljfox.org/clincialtrials

.

Susan Mollohan first noticed a tremor in her hand while at work as the Dean of Students at a high school in New Hampshire. After about four to six months of living with the tremor, the high school nurse, a friend of Susan's, suggested she see a neurologist. Soon after her diagnosis with Parkinson's disease (PD) in March 2009, Susan soon began taking advantage of opportunities to learn more about her diagnosis, and ultimately, do something about it.

At an educational seminar at Boston University about Parkinson's disease, Susan learned about an observational clinical trial studying the impact of exercise on PD progression that needed volunteers. "I was motivated to participate so that researchers could publish information about the benefits of exercise for other people with PD," says Susan, an avid skier and yoga devotee.

The study at Boston University lasted two years and required participants to come in for two visits each year. Participants were asked about their exercise routine, including type and frequency, and then underwent general physical assessments of their pace, balance, etc. "Participating in this trial gave me an improved outlook and attitude about my diagnosis," says Susan. "People need to take control of their health questions and get out there to find answers. We have to advocate for ourselves and not give in to the diagnosis." You can learn more about participating in clinical trials by visiting

www.michaeljfox.org/clinicaltrials

.

Since the completion of the study, Susan says she's willing to participate in another trial has registered as a volunteer on Fox Trial Finder,

The Michael J. Fox Foundation

’s online clinical trials matching tool. Fox Trial Finder (

www.foxtrialfinder.org

) matches interested PD patients and control volunteers with the clinical trials that need them, and allows them to send direct anonymous messages to pursue enrollment. In doing so, Fox Trial Finder empowers the patient community to play an active a role in drug development.

Since its launch in 2011, over 24,000 people both with (76%) and without (24%) Parkinson’s disease have signed up on Fox Trial Finder

.

In addition to searching for new trials to participate in on Fox Trial Finder, Susan does yoga more now than before her diagnosis and has even written a book about the positive effects of yoga on her Parkinson's symptoms. Susan also fundraises for

Team Fox

and this year she and her husband Steven will participated for the fifth time in the annual New England Parkinson's Ride, a 50 mile bike ride through Maine benefitting The Michael J. Fox Foundation. Her team’s name is Suzy's Shakers.

And she's certainly shaking things up: Susan says her goal is to put a face to Parkinson's disease. Recalling an anatomy class she visited while working at the high school, she says, "Two girls happened to be giving a presentation about PD. They used a picture of a hunched over, elderly man. I told them, 'That's not the face of Parkinson's...this is.'"

You can be part of the answer to Parkinson's disease. Sign up today for

Fox Trial Finder

to learn about 

ongoing clinical trials in your area and get involved in the pursuit of a cure.