OM STORIES

Jill Jill

Starting the Year Off Right

Happy 2013 OM'ers!

Well, in keeping with the spirit of the New Year, I must start things off on the right foot by being truthful in admitting defeat in the 2012

Outdoor Mindset

Chili Cook-off that was at the end of October 2012. Yes... it's true... Kyle's Two-Step Texas Chili took first place this year, bringing in lots of votes (aka Texas money brought up to CO by the Martins!) As promised, here is the winning chili recipe. I could've re-typed it, but I thought the pictures and comments in the original recipe print-out were too good not to share! (Don't forget to add more beef!!!)

The 3rd Annual Chili Cook-off was a great success, raising over $8,000 for our programs and members. I huge thank you goes out to everyone who attended, donated, or participated in our silent auction which had some amazing items this year. The chili was good, the beer was good, and the auction was great, but the people who come are always the best part!

That same weekend, amidst the chili cooking and preparations, we even held a mini Board Retreat, where the OM Board of Directors did some planning for 2013. To say the least, we are extremely excited for the upcoming year and the future of Outdoor Mindset. We have some great ideas for enhancements to our programs to further serve our Members and get everyone outdoors. So stay tuned! 

2012 was a great year for Outdoor Mindset, as well, with just under 200 Members who are affected by a neurological challenge and have a passion for the outdoors.  Our

Meet-Up Groups

launched this year, with great momentum in both

Boulder, CO

and

Hanover, NH

. We've also made some amazing 1:1 connections through our

Guide Program

, where Members provide great support and inspiration through their relationships. Our Members continue to amaze us with their stories and spirit!

We have so much to be thankful for this past year, and moving forward for 2013 but we can not say it enough: Thank you so much for your support and for tuning in for updates! Now get outside. :)

Back to resolutions, football, and winter fun,

Jill 

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Jill Jill

Trying to Find the Silver Lining

So I'm not going to lie - when I sat down to put together tonight's blog (which is the second entry from Julie, our OM Member in Sweden who is training for a half marathon while matched up with another OM Member in CO also training for a race) I had a hard time seeing the silver lining in the reality of Julie's latest post. After reading and re-reading her powerful words, I came to the realization that the 'positive, smiley face, encouraging' silver lining of her story (which I always try to find) is that she's doing something about the horrible disease of ALS by raising awareness. And while she supported her mother in her years of ALS, she also did all she could, by finding hope. 

The other thing going through my mind as I write this tonight is the importance of Outdoor Mindset in connecting people affected by neurological challenges like ALS - to connect people affected by these tough experiences so that they can gain even more hope, solace, and understanding in what they are going through, or what they have gone through, or what they are about to go through. And while the advice may not always be easy or sugar-coated, there is a power in numbers and in connections for both awareness and for hope. 

You can donate to Julie's project here. 

Is that a silver lining I see on that cloud?

Here's Julie's second post on her half-marathon training: 

I'm out there running and the first thing I do is swallow a team of bugs... then I trip. Honestly. And this was going to be my first big run outside. An hour long run. What a way to start. The woosie in me wanted to forget it this time, turn around and drink a glass of wine outside on our new picnic table with my husband who just sat down to a lovely meal. The motivated me with my Mom's voice said, "don't be a woosie". So, continue I did.

Must. Raise. Awareness.

Can you imagine walking into a Doctor's office not knowing what is wrong with your legs and why they don't seem to be working exactly right? Knowing that something is just a little bit off and then walking out knowing you are on a downhill slide with no cure? No, I can't either. That's why I'm dedicated to raising awareness in order to help find a cure for ALS and put an end to this awful neurological disease.  

Mom was diagnosed with ALS early on but we didn't believe it. At all. We kept hope alive. My Mom and Dad saw multiple other doctors and finally found one that did have hope, which was rare. Looking back now it's clear to me that there seems to be two schools of thought when it comes to doctors and ALS. 

School of thought #1: This Dr will just diagnose it as they see it, it's matter of fact for them. They are Doctors and their purpose is to tell you what is ailing you. I guess there's nothing wrong with that. I'm sure there are ethical reasons behind a lot of it and sometimes those mega braniac Doctors just don't know how else to go about it. They just tell you the facts, tell you as it is, done. 

School of thought #2: This is the Doctor who is, as I like to call them, 'Humane Doctors', at least when it comes to ALS. They see the disease from a mile away but it doesn't benefit the patient if they know what it is and how their body will eventually start to go down a downward spiral - especially if it's early on. So this type of Doctor rules everything else out. They keep searching and testing for different treatment paths for the patient to take. They give you hope. 

So we found a nice, wicked smart, humane Doctor that likely knew it was ALS but did try and rule it out anyway. He was cutting edge, he knew his stuff, he had access to info, he was willing to spend time with us and just chat. He gave us hope and that we desperately needed and wanted. And when it's ALS you've got to want someone to convince you it's not. 

He's an MS specialist, but it's all in the head, right? Thank you Dr. Sadiq, for your hope, care and compassion.

We all knew deep down what it was. We finally resorted to admitting it and then the process began of letting that info sink in. Mom, you were superhuman. I remember she looked me in the eye as she was taking her electric wheelchair into the elevator and I was going towards the stairs and said, "Are you going to be ok with this?" My response was with as sturdy and strong a response as it could be and an utter lie so she didn't have to worry, "Yes". She entered the elevator and after the doors closed, I broke down in tears until I met her at the bottom of the elevator with a smile again. She was amazing. I put myself in her position now, at least I try mentally. I will forever learn from and admire her strength in all situations and especially her last test, ALS.

Thank you for reading again.

Julie

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Outdoor Mindset Outdoor Mindset

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....
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Outdoor Mindset Outdoor Mindset

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...
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