Tuesday, April 27, 2010

My AWESOME Neuromentor!

Since my last post and many crazy neurological tests later, I had a very powerful and unique experience. Our fearless leaders, Kyle Martin and Sara Turner, introduced me to a woman named Diane Van Deren, who had a similar surgical procedure on her brain that I am currently being evaluated for. The procedure is called a temporal lobectomy, which means they remove the part of the brain where the seizures start (in hers and my case, the right temporal lobe).

Up until the day I met Diane, there was always a part of me that yearned to have someone to talk to who can REALLY relate to what I'm going through, both neurologically and emotionally. Someone who has experienced it. Don't get me wrong, I have had unbelievable support from friends and family as I continue the process, but there is something incredible about this connection.

First, let me tell you a bit about Diane. This woman is an international adventure phenom! Since her surgery 10 years ago, which has freed her completely of seizures and meds, Diane has conquered incredible outdoor pursuits. Check out these links to learn more about her:

To make a long story short, Diane is an inspiration to me. She represents what is possible, despite facing a serious reality such as brain surgery. Her first-hand experience with brain surgery, and support as I go through the evaluation process has been invaluable. We share a common passion of challenging ourselves in the outdoors, which makes the relationship even more unique and exciting. I look forward to sharing in outdoor adventures with her (after she returns from running the Great Wall of China in May!!).

At Outdoor Mindset, our hope is to provide a network that inspires these types of mentor connections among individuals who face similar situations, much like Diane and I have. Check us out! Your involvement will be instrumental in helping yourself and others live big, despite our f'ed up brains.

Over and out....

Friday, April 23, 2010

Dominatin' Diagnosis

First off, let me say this organization rocks... I've never see anything like it in the neuro-support world. Most stuff out there is WAY too clinical, depressing, and just no fun. This organization is all about living big, despite pesky neuro baggage!

My friend Kyle contacted me a few months ago, asking me if I wanted to grab a cup of coffee. Being a full on 'Joe addict', I naturally took him up on it. That's when he threw out his situation (you all know the story). Knowing Kyle and his 'get at it' dogma, he wasn't gonna let this neuro diagnosis sway his spirit. After an in depth conversation, with ideas flowing, the seeds of Outdoor Mindset were planted.

Kyle thought I might be interested since I was in the non-profit management world in my previous life. He also knew I had uncontrolled epilepsy.

Long story short (bear with me), when I was twelve, I dropped in front of my friend while on summer vacation, and freaked him out pretty good. Turns out it was a grand mal seizure. Lots of tests, and visits with a bald neuro doc later, I was tagged epileptic. Hmm, epilepsy. That's interesting, I thought. So, I got put on some meds and life went on as normal. I eventually grew out of the spastic grand mals, and have had partial complex seizures ever since. I'm now 38.

Thankfully, 95% of my stuff goes on in my sleep. The other 5% have occurred anywhere. On the ice during hockey games, on a glacier in Alaska, or watching TV with friends. They have occurred pretty regularly for the past 26 years. My stance on my diagnosis has always been 'I have epilepsy, no big deal'. Over the years, docs have tried several meds to control my seizures, but they're persistent little buggers. I've failed three meds, and am now on a high dose 'cocktail' of two newer meds- still having weekly seizures. None the less, I've been an avid athlete all my life, and have been adventuring in the mountains on all sorts of toys since 1996.

This status quo changed a bit this past fall when my doc leveled with me. For the first time, the word 'brain surgery' reared its ugly head!

Stay tuned...

Thursday, April 22, 2010

Outdoor Mindset is Tramping for Treatment in New Zealand!

So a long, long time ago (ie November) when all of this brain stuff with Kyle was first going down, we got the travel bug. I say 'we', but Kyle was really the ‘mind’ behind this genius idea. After all, travel and adventure are sometimes the best medicine and that’s exactly what Kyle needed. In fact, that was what we all needed. We needed a two week, all out adventure to New Zealand and we wasted no time planning this excursion. Before we knew it, we had racked up 10 amazing friends and individuals (7 of who are on the Board of Directors for Outdoor Mindset!) who were ready to buy tickets for this trip. We booked our tickets in February and immediately started a countdown for our departure.

Along the way, we tried to figure out exactly what we wanted to do while in New Zealand, but the truth of the matter was we wanted to do it all! So we decided to dominate just the south island, and pack in the activities. We fly into Christchurch on April 25th and jump in our 11 person van with a gear trailer and take off to Braemar Station, where we’ll be staying in the sheep shearer’s quarters overlooking the lake. The next day we drive to Queenstown and hit the Routeburn Track for 3 days! The Routeburn track is one of the “Great Walks”, so we’re really excited to see what all the hype’s about. After 3 days on the trail, we’ll go to Milford Sound for the night after our hike and take in all the beauty it has to offer. Then it’s back to Queenstown to do some crazy adventure stuff for a couple of days and pick up David (the 10th member of the group!) The second week of the trip is our PIBE week (Play It By Ear- Kyle’s favorite saying). Here are the things we KNOW we are doing at some point or another: staying at a Schoolhouse hostel in Okarito, driving up north and hiking/exploring along the way, see some whales and dolphins, drink some wine, hike and play, etc. The last 3 days of the trip, we’ll be at this amazing beach house in Picton where we are right on the water, down the street from wineries, hiking, and relaxation!

This trip is so appropriate at this time because things have been so hectic lately for all of us: moving, bills, brains, work, car problems…. This list can always go on. But the one thing that’s truly amazing is that we can put ALL that stuff on the back burner for two weeks and experience a beautiful place we’ve never been before. We can laugh at the funny accents (no offense anyone), enjoy the amazing scenery, hike in the beautiful mountains, and get to our ‘zen place’… the outdoors. That’s the one bond that really pulls us all together and makes us all so passionate about Outdoor Mindset and the benefits it can bring to individuals facing challenges in their lives. Think of this trip to New Zealand as a ‘test kitchen’ for Outdoor Mindset. While living the active, adventurous lives we all love, we want to see how far removed we can get from the pain-in-the butt portions of our lives and evaluate the benefits we will undoubtedly receive from this trip. Wish us luck…. I think this research is going to give us positive results.

Bon Voyage!

Thursday, April 15, 2010

The Beginning

A few months ago, our good friend Kyle went to the doctor because he was experiencing some symptoms that just didn't seem right. This led him to an MRI and the eventual discovery of an abnormality in his brain that is most likely a type of benign tumor. In the time between his doctor's appointment and his MRI results, Kyle looked to the internet for information and found no shortage of research and white papers about neurological disorders. What he didn't find was the answer to his biggest question: Regardless of the diagnosis, would he still be able to lead an active, adventurous life?

In the months following his initial MRI, Kyle envisioned an organization that could help people facing neurological challenges connect with others in the outdoors while helping one another through their new post-diagnosis lives. He pulled together a diverse group of people from around Colorado to make his vision a reality.

Since January, we have been meeting regulary to define our vision, mission, values, and by-laws that govern our organization. We have also formed volunteer committees to focus in areas of finance, organizational development, and marketing.

On this journey, we reached a major waypoint last night. We held our first official board meeting at Cantina Laredo in Boulder to vote on our organization's name, affirm board members, and elect an executive committee. Being a part of any company's start up always has defining moments that are funny, exciting, and moving. Last night was all of those things. Funny because we are office-less and meeting in a Mexican restaurant, opening the meeting with each board member's favorite joke, and "knighting" our new officers with steak knives. It was exciting because we finally agreed on our name - Outdoor Mindset, approved our by-laws, affirmed our board of 12 members, and voted on the plan for phase 1 of our website. But most of all, last night was moving because we got to see Kyle's vision and all of our hard work shape up into something very real.

We know that our work has only just begun and are excited to share our journey with you. And so, without further ado...

An active community of individuals affected by neurological challenges leading adventurous lives with no limits.

We unite and inspire people affected by neurological challenges to live big through a common passion for outdoor adventure.

  • Cultivating an online community that connects people based on their diagnosis and outdoor interests.
  • Promoting a support network that encourages sharing experiences, resources, and information.
  • Supporting regional events and adventure programs to strengthen connections and encourage  healing of the body, mind and spirit.
  • Quality of life - we believe in living our best lives, connecting with the outdoors and finding opportunity in adversity
  • Proactiveness - we believe in taking initiative, staying informed and creating change
  • Community - we believe in an open-minded environment where we learn from and support each other
  • Inspiration - we live and work in a way that promotes optimism, creativity and fun
  • Accountability - we believe in taking ownership of our lives
  • Integrity - we believe in honesty, ethics and transparency
  • Passion - we exude energy and enthusiasm, and play hard
  • Humor - we believe laughter is the best medicine