OM STORIES

Kyle Martin Kyle Martin

Heidi joins OM & the Denver Meetup Group

Heidi is a new Outdoor Mindset member, who recently joined the Denver meetup group. We're super excited that Heidi is part of the OM Community and appreciate her sharing this blog post:

Heidi is a new Outdoor Mindset member, who recently joined the Denver meetup group. We're super excited that Heidi is part of the OM Community and appreciate her sharing this blog post:

I don’t even know where to begin – this I know for sure:  I know I am a typical Colorado native.  I love the great outdoors; skiing, camping, hiking, you name it…………………. .oh, and of course The Broncos!

I was an educator. I love learning and had taught children for 17 years.  I love people, cultures, and travel. I traveled to Croatia, Germany, and Switzerland, studied in Italy, taught in Mexico and explored the US too.  Backpacking the Grand Canyon was incredible. My 5 yr. old niece and I are going to “The Big Hole” when she’s 12. I possess the independent spirit that accompanies all of this.     

Well, I suppose I don’t know where to begin because I also know that I am beginning a new life.

Although the desire that beats the heart of all of these “known’s”, these “loves”, essentially the pieces of my identity, still exists, my ability to live them altered.  I must fulfill my identity differently because who I am is not going away and nor are the challenges that brought on by epilepsy.  How do I marry these two?  That is what carving this new life is all about.

I began having seizures four years ago.  The seizures increased in severity and occurrence over these years until I was only safe under supervision or just within the walls of my small condo.  Often my bits of solitude merely came on the heels of persistent insistence.  My independent spirit was wearing on me and my dear loving and supportive family.  However, it usually produced our only refuge.  I had taken every medicine, suffered extreme side effects, and withstood countless tests and hospital stays. 

My family had been stretched immeasurably.  I was completely dependent, a bus ride let alone a drive were out of the question.  It had been four years of an incomprehensible whirlwind.  My mind could not begin to process the changes my life was going through at even half the pace with which they were happening.

This complete redefinition of life, health, and future led me to a decision that, as difficult as some may find, was rather obvious to me.  Three months ago I decided to have brain surgery.  I couldn’t be more grateful; language is inadequate to express this. The world has supported in ways I didn’t know were possible…friends, family, doctors, acquaintances, and beyond.                                                                                     

I have now experienced three months without a seizure and have even begun to dip my toe back into the outside world. I have gotten out on my own, ridden the bus, taken walks, and even met friends for lunch.  Okay, I won’t be hitting the back bowls or even jumping on a bike.  What do they say about, “Running before you can walk.” ? 

I am taking it very easy and so glad that through my struggles I have met Lisa Avram, a leader in the Outdoor Mindset Denver Group.  I met Lisa, and a really moving group of people who also struggle with epilepsy, through an art therapy group.  Our continued gatherings regularly provide me with a unique strength.  Through their support and my experiences I have learned the importance of listening to my limits vs. what our culture expects of us.  I am enjoying things I never believed I would.  A bus ride is quite an adventure, a joy all its own and one to celebrate!  Sure, not the south rim nor Yellowstone but a gift nonetheless.

As I get out again at the pace that my health dictates, I am grateful for the resource of Outdoor Mindset.  Yoga is wonderful, I look forward to walks around Cheesman and eventually there is hope for much more.  What I appreciate is the spectrum of challenges I can choose from through OM.

I believe I have found a tool to help me marry who I am and the challenges in this new life. 

I look forward to it all and am so grateful - bus rides to mountaintops!   

 - Heidi

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Jill Jill

Staying Centered

Tonight we have another chapter from Julie during her marathon training. This entry sheds a lot of light on the challenges and importance of being a Supporter of someone with a neurological challenge. At Outdoor Mindset, we understand this important role, which is why our Membership and programs are also for Supporters. Take is away, Julie:

Week of August 20, 2012 

Last night I went out for a run after my husband got home from work. It was a beautiful night and this is the most unbelievable place to run. This little town of Djursholm. By spring and summer there are running paths by the ocean, to the golf course, around town and by winter they are cross country skiing paths.

I saw a fellow trainer wearing the I'm Running for the Stockholm Marathon shirt. I felt cool, like I was in a club and she and I for a brief second knew we were in it together as we were running on the same path deep in the wood while seeing the water peeking out from between the trees. I was running as the sun was starting its descent. I felt like the animals were watching and guiding and helping me along. Does that sound weird? I feel weird having said it, but it's the truth. Maybe Outdoor Mindset is making me more outdoorsie after all. They are, after all, the guru's in helping all those people living with neurological diseases get out there and feel life, feel the elements, feel that they are not alone. The breeze, the smells of the dirt and leaves, the little chirping and scuttling of birds and other unidentified animals were all there talking to each other guiding me and my runner friend in those woods for that one stretch of path over 5 minutes or so. I'm not so outdoorsie but I was hoping for the rain to come. That would've rounded out my experience somehow. I talk to my mom out there, in my head of course. Not out loud. I don't listen to music, I like hearing the sounds around me and then I can also think a lot more and talk to Mom. Again, weird I know, but somehow it's comforting.

If only it was as easy as the push of a button...

I remember when she was sick I would go to the gym all the time. It was the way I let out energy and kept centered throughout her illness.  So, several years later, when I found Outdoor Mindset, I realized that they were in the process of creating something important; a community of people encouraging each other to use exercise to cope with the stress and the grief of caring for a friend or a loved one with a neurological disorder.  I saw immediately that OM was so aligned with my belief in exercise as an important coping tool; that their programs could be valuable tools for those fighting neurological disorders as well as those working through their grief.  So I decided to contact them and they matched me with a partner (across the globe, but close in life experience), encouraged me to find an outlet that was the most aligned with my needs (raising awareness and funding for ALS research) and continue to support me as I work towards my goals.

So, I run another day for you Mom, for me, for our family.  I run for all those living with a neurological disorder.  I'm thankful that Outdoor Mindset is out there with the hope of helping all of you affected by a neurological something.

Until next time,


Julie

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Jill Jill

Hold on to your seats!

Like I said in my last blogpost: We have a lot going on at Outdoor Mindset right now… and that’s an understatement. But probably the most exciting of all is the fact that we’ve hired a part time Director of Programs and Membership to help manage and develop our programs. And well, she is awesome (again, definitely an understatement!) Patti comes to us with years of valuable non-profit experience, and above all, a passion and excitement to nurture and develop non-profits with great programs and potential – like Outdoor Mindset! So here’s a little shout out from Patti herself, giving you some insight about who she is, and what’s to come with her involvement with OM.

From Patti:
A few hours before Kyle called to offer me this position, I was practicing yoga next to a woman in her 70’s who has Parkinson’s disease and I noticed that as the class progressed, her hands calmed and the trembling slowed. She has a beautiful practice: soft, gentle eyes and strong, graceful poses. We started talking after the class ended and she told me that she was headed to a retreat at Shoshoni in Rollinsville, CO the following weekend. I could tell that it took courage for her to sign up for the retreat. “I drove up there by myself to see it, I didn’t know if I’d get lost on the way, or if I’d even find it,navigating the back roads, but I did and I love it; it’s a beautiful place.” 

What touched and inspired me the most about hearing her plans, was that she was pushing herself to find new experiences; to live her life. She found something that she was curious about and created an adventure for herself. Hearing her story reminded me of how important that is for all of us. To me, that’s what Outdoor Mindset is all about: people connecting and inspiring each other to continue living their dreams. Or, as the Outdoor Mindset team would say, to Live Big!

I’m three weeks into my new position as the director of programs and membership and am so impressed with the incredible job that the board and volunteers have done of laying the groundwork for a successful organization. They are a dynamic, engaged group with a wide variety of professional skills and they are passionate about Outdoor Mindset’s mission. I’ve worked and volunteered in the nonprofit sector for over 15 years. One of the positions that I found to be very fulfilling was as the executive director of the Rocky Mountain Chapter of the ALS Association. While working with people with ALS (Lou Gehrig’s Disease), one of the things that I found to be the most disconcerting was the number of people who found themselves isolated because they didn’t have the support to get out and stay active. Many seemed to cut back on activity long before it was necessary. When I saw the job announcement for this position, I thought to myself, what a great idea for a nonprofit! I’m looking forward to working hard to make this organization more visible and to developing its programs so that we’re able to increase the quality of life for those suffering from neurological disorders. I love to hear from our members, please call or email me and introduce yourself!

-Patti

See, I told you she's awesome! So hold on to your seats people, because with the addition of Patti and our dedicated Board of Directors and Volunteers driving this bus, we’re all in for a wild ride! 

One great thing we’ve already put together is this fabulous (you can saw 'fabulous' on a Friday and it's ok, right?) video showcasing what Outdoor Mindset is all about. Check it out and share it with your friends, family, pets, co-workers, waiters and waitresses, and anyone else who will watch. :)


HAPPY FRIDAY! We hope you are all as excited as we are about the great things going on with OM!

Living Big in Bozeman now, 
Jill
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Jill Jill

Moving Forward

Some sad news surfaced the other week that made me really stop and think: Canadian Freestyle Skier Sarah Burke passed away from a traumatic brain injury after crashing at the bottom of the superpipe during a training run in Utah on Jan 10, 2012. A four-time Winter X-Game Champion, Sarah tore her vertebral artery during her crash, which led to severe bleeding on the brain. A leader in her sport, she lobbied to get superpipe skiing added to the Olympic program, and after winning over Olympic bigwigs, the sport was added for the 2014 Winter Olympics in Sochi, one she won't live to see. Sarah's achievements and spirit should be celebrated, and will certainly be missed. 

Pardon my French, but this sucks. This is horrible and sad that such a young, talented woman has left us too soon from a traumatic brain injury that she suffered, even while wearing a helmet! And unfortunately, traumatic brain injury is no stranger in the skiing and snowboarding sports arena that many of us are gearing up to embark upon now that there's snow in the high country.

But as horrible as Sarah's passing is, I've also been hearing many encouraging and inspirational stories of traumatic brain injury perseverance and domination in the ski and snowboard industry. Take Kevin Pearce, for example, who suffered a traumatic brain injury late in 2009 on what will turn out to be the same half-pipe Sarah injured herself on the other week. Just 712 days after his injury, Kevin got back on the hill at Breckenridge Mountain for his first run after going through intense physical therapy, which started off for the first three months as 8 hour sessions every day.

Kevin says "I think the most important thing that I can share with folks about traumatic brain injuries is that your brain never stops healing. You can heal as much as you want as long as you keep your mind to it and work hard. I think it's really hard for a lot of kids because they think they're in such bad shape that they just give up, and that's been the most important lesson for me: It's hard and it takes a lot of work but you can heal."

Then there's professional snowboarder Danny Toumarkine, who just over a year ago suffered a traumatic brain injury while riding in Montana. A brief bio, according to him, reads: "On January 3rd I suffered a traumatic brain injury; 4 brain surgeries, medically induced coma and paralyzed. 5 weeks later I was released from the hospital and in recovery mode. Now its non-stop physical therapy and physical activities whether it be hiking, golfing, fishing, rock climbing etc."

Check out this trailer about a film about his brave and intense recovery journey:


Moving Forward - Trailer from Shreddy Times on Vimeo.

You can walk the full film here.

One theme that weaves between these two stories is the spirit of determination and positivity these guys have retained while facing their neurological challenges. While staying positive and working hard towards their end goal of doing what they love in the outdoors again, Kevin and Danny have both dominated their recoveries and  become great role models for those facing traumatic brain injuries.

So let's all learn from them, knowing this is what Sarah Burke would've done, as well:
Stay positive! Get outdoors! And continue to Live Big!

Happy Monday -
Jill
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Jill Jill

Take a Moment to Feel Alive and Thankful this Holiday Season

HAPPY HOLIDAYS TO ALL OF OUR OUTDOOR MINDSET FRIENDS AND FAMILY!

This year, don't let the craziness of the holidays overtake your life. With family coming into town, gifts to find, things to do, houses to clean, and meals to be made, let's all not forget to cherish the little moments during the holidays that should be the primary meaning of this season:

to give thanks and spend time with those you love, doing the things you love, which hopefully also includes some R&R in the outdoors, as well. 

To help put this in perspective, we have a guest blog from one of our fabulous Outdoor Mindset Guides, Natalie. In her story you'll read below, you'll find that amidst recovery from brain surgery (and you think the holidays are stressful!), Natalie found herself in the middle of a lake in her kayak giving thanks for every second out on the water, feeling alive and thankful for her neurological experience and the new path her life was on. Take this inspiring and amazing story with you this holiday season and give thanks for the many blessings you have in your life, and take on a new appreciation for the little moments we should all be thankful for.

Here she goes: 

The "New Normal for Natalie"

My journey with neurological challenge began in April of 2005 with what the radiologist report said, "accidental find" - a brain tumor in my right anterior temporal lobe, about the size of a golf ball.  It was a  Friday morning.  I was so confused about the information they handed me on the paper that I went home and began to google all the types of tumors and the impacts to the areas of the brain that may be affected by my type of tumor.  What I found was pretty upsetting and I didn't have anyone to talk to about it.  I didn't want to scare my family and yet, I needed emotional support.  Hearing "brain tumor" is a pretty scary thing and the thoughts of "Okay, now what the hell do I do?" are the ones that come first, finding all the information you can and then of course determining the approach with your doctors is the process that isn't so easy to have patience to endure.  I wanted answers quickly and found that in some cases, they simply don't have answers to provide.  Plus, everyone and every situation is different.  I was thankful cancer was ruled out and still, I had a tumor that caused "mass effect" in my head.

My approach was to rule out some of the serious side affects that "may" happen if we waited and watched my tumor for a while.  My wonderful team of doctors (really love them) admitted that they really didn't know much about my type of tumor and given, that it represented less than 1% of all intercranial masses, they were very rare.  I truly appreciated their direct, honest feedback and the amount of time they spent with me to understand what I was facing.

With MRI's planned every six months (unless new symptoms appeared) - we "watched" my tumor.  We watched it slowly grow.  I knew it was growing given the increase in pain I had been experiencing from the intercranial pressure, it's similar to the symptoms of meningitis.  I could deal with those and often wondered what a "regular" headache would feel like.  My pain tolerance began to increase and dealing with the pain became routine.  All this while working full time in a management executive role - and being a single mom to 2 wonderful boys.

We watched it...  In the mean time - I continued to do the things I loved outdoors; fly fishing, kayaking, hiking, water/snow skiing, boating,   Occasionally, I would be debilitated with the pain and be in bed for a day or two but I was able to get back into the swing of things quickly.  I rarely missed a day of work and learned to push through the pain or "nut up" as my sons would say.  ;-)

In the fall of 2008 I started to feel different.  The painful "headaches" were getting more frequent, lasted longer and I became WAY more sensitive to light and noise.  I also noticed my sleep was far more interrupted.

On December 19th, 2008 I experienced my first partial complex seizure.  Everything changed on that day.  I was alone, had just come down the stairs of my home when out of blue, with no warning my head/neck were rigid and my chin was close to my left shoulder, my left arm was rigid and I couldn't move it.  I felt my way to the bathroom with my right hand, sat down and waited.  The seizure lasted about 60 seconds but seemed much longer.  I was confused - I didn't know what to do.  In my post seizure funk, I drove to work.

It wasn't until I was at work for a while that I realized what I had just been through.  So, I went back home and called my doctors.  I was immediately put on Kepra and a few other drugs.  The MRI revealed my tumor had grown to about the size of an egg and surgery was scheduled.  I asked for the surgery to be in March of 2009 so that I had time to get my "house" in order.  The list of risks from the surgery was long.  After you read "death" - all the other ones seem like pretty good outcomes.

The seizure clinic revealed I was having partial complex seizures through the night as well.  No wonder I couldn't sleep.  And, that the cause of the bigger seizure was the growth of the tumor.

My surgeons did an amazing job with the craniotomy.  Prior to the surgery they said there was a 50% chance my tumor would come back.  After the surgery, they felt it was less than that and had hope I wouldn't need surgical intervention in the future.  But again, we're "watching" it.

I had many challenges to face before, during and after the surgery.  The most important message I think I can share is to learn to accept there will be a "New Normal" for you when you're faced with a neurological challenge.  Folks would ask me if I was 100% - back to normal.  I think it took me a while to realize that through such adversity and challenge I could not help but be changed as a person.  After my recovery, I was more grateful for everything from the smallest thing like birds visiting my bird feeders to being able to hold my sons.  I looked at everything differently.  My New Normal was a gift.

This picture of me in my "cloud" kayak was taken about 9 weeks after my surgery.  It was the first outdoor experience I'd been able to have after my surgery.  It was a turning point for me in my recovery.  I had many weeks of confusion, fear, worry and stress.  Because my tumor was pushing on my emotion center - with so much pressure that it actually also thinned the skull wall - I felt confused a lot and I suffered short term memory loss.  I would often wonder "Am I feeling the right thing, did I say the right thing, was I empathic, did I even know how to be empathetic any more....... etc."  But I couldn't find the words to share that with anyone.  I would express that frustration in other ways towards those that I loved.  Like complaining that there were no pictures of my recovery.  What that really meant was - I need some evidence of what happened, I have no memory of it.  But again, I couldn't find the words to say that...

Being on the lake that ONE day in my kayak and my belly boat fishing was the first time after my surgery where I didn't worry.  I didn't feel like a victim of a brain tumor.  I was ALIVE.  I savored the warmth of the sun on my face, I prayed to God and gave my thanks for getting me through my challenge, I dropped my hand in the water and appreciated that my hands worked, I cried at the beauty of the calm mountain lake water and each fish I caught (and released) I would kiss them and thank them for biting my fly.  I didn't worry about how to tie my flies or how to cast - it came naturally to me and I was grateful for every single second...

That trip fly fishing was by far the biggest catalyst in my healing.  After that trip, my short term memory challenges began to subside.  I had renewed hope and strength to fight.  I was able to get off most of the meds by June and went back to work.  I traveled internationally to Sweden in mid June and kayaked there as well.

Being outdoors, in nature - especially around water and then doing the things that I used to love prior to my surgery helped me realize that I am settling into my "New Normal" and it's pretty damn cool to come out the other side of all this as a survivor.

I was introduced to Kyle, from Outdoor Mindset, by my surgeon - we have the same team of doctors.  I am honored to be part of the Outdoor Mindset team and cannot express enough gratefulness for a group like this existing.  Being a Guide also helps me by being able to "give back" or "pay it forward" - by sharing my experience. After all is said and done - when you connect with another person facing a neurological challenge, no matter where they are in the process - you GET IT.  There are no words that can be expressed to share what that connection is like - it's deep, powerful and a feeling of relief comes over you that you don't have to try and explain what is going on in your head.  It's SO helpful to have someone to talk to - someone who has been there.  I hope I can be that "someone" for many folks and I would feel blessed to be next to you in your journey.

~Outdoor Mindset Guide, Natalie

I don't think any other words are needed.

Live BIG this Holiday Season and thank you for everything you do,

Jill

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Jill Jill

Ann Nicocelli Part II: What I have learned...and wish I had known before brain surgery

Today we have part deux of Ann Nicocelli's amazing story and blog. She has twenty points and tips about what she has learned and wished she had known before having brain surgery just over a year ago for a brain aneurysm. She says above all, the most important guidance she has to give is to stay positive and maintain a sense of humor through it all. Plus I've added some shameless Outdoor Mindset plugs along the way in green that tie into her words of wisdom. :)

Here she goes:

1. Your body can only take care of you at the level and quality that you take care of it. The phrase “your body is your temple” gains new meaning. If you take care of yourself, your mind and body will give back to you x100…and you will need it.

2. Everyone taking care of you – from the people in the hospital, your doctors, your family and friends – is human. Although you are the focus, they also have and need their own support networks and friends. It is important to be respectful and appreciative.

3. There is such a thing as too much information at most stages of this process. We live in a world of information frenzy. There are pros and cons to our access as you gather information for a medical procedure. In advance of my surgery, when I went online and looked for similar stories about what to expect, they were hard to find…but there were plenty of scary anecdotes that were not relevant to my situation that were emotionally exhausting to process.
(So instead you should just go to OutdoorMindset.org right from the start and sign up to be a traveler and connect with someone who has experience with a similar diagnosis or neurological experience!)

4. It is ok to protect yourself mentally as you go through the diagnosis, surgery and healing stages. You need your mental strength. It is important to stay strong and keep positive people around you.

5. There is no perfect way to prepare yourself, your family or your friends for your brain surgery. Everyone is different. Do what feels right and is personalized to you. Make sure you have the legal and financial components covered…and from there, it is creative sailing.

6. If your family is involved in the process with you, they may change and your relationship with them may change. This is an intense process and you are not the only one who will be affected. Relationships became much more open, honest and deep. This isnt necessarily a bad thing, but it isn’t always easy at every step. (Have your friends and family sign up to be a part of Outdoor Mindset as well, as a Supporter!)

7. If you have children, they will likely be resilient, but not impervious to what is happening around them. They will take cues from you. Make sure that there is a plan that directly responds to their needs at every stage – before, during, and after surgery. There should to be someone other than just yourself that is sensitive to your children at all stages. The outcome to you surgery is unpredictable, so there should be a plan that can adapt to a variety of foreseeable scenarios. It is important to set this up in advance.

8. Your quality of healthcare and surgical care matters…a lot. Get as creative as you can to get the best surgeons and doctors to help you navigate your journey. Additionally, although your comfort with the lead surgeon is critical, the comprehensive quality of the whole team and all the services of the hospital is very important as well.

9. The way you try to fix your aneurysm the first go around is critical. This is your brain – once a surgeon enters your brain, it will affect your options moving forward – so choosing wisely the first time matters.

10. The surgeons and doctors you talk to will generally give you a solution based on what they know how to do. If they are a specialist in clipping…they will most likely give you a clipping solution. If they coil…they will likely tell you coiling is the best. Remember, medicine is a business. Try to find doctors who can truly give you an assessment of all the options available.

11. Coming out of this you may not be the same or look at life in the same way. This is a daunting statement as it can mean many things. Know that it does not necessarily have to be bad…it can actually be a wonderful thing. Events like this, if internalized, can make you realize what a blessing life is, how to appreciate the small things, and that all those challenges that used to interrupt you from enjoying life, aren’t that significant.

12. If you are single...your social life won't end after brain surgery. I am not sure if it is because you come out more relaxed or if there is some curiosity out there about people who have gone through brain surgery…but there are still plenty of people out there who seem to not really care that you have a scar in your head. It's actually kind of cute. I love my scar, I am proud of it. :-)

13. Most of the healing process is very personal and internal to you. Others are heavily involved, but most of the fight to recover is within yourself.

14. There are many likely scenarios where you can come out of surgery and this process stronger than you went in. Stay strong, remain hopeful, and continue to dream BIG.

15. Lessons Learned about Going Back to Work: Take it slow…if you don’t, your body will make you – there is a reality of how hard you can push yourself, and the limit you had previously is diminished. It will come back, it just takes time.

16. Time has a new horizon. Healing and evolving past brain surgery is not about taking days or weeks, it is about taking months and years. The days matter a lot, but how I handle the months matters too. You may have higher expectations of yourself than others do around you. It is ok to take it slow, don’t be hard on yourself. Give yourself time.

17. No matter what you feel about your life, you will likely feel like you need to go through an entire life assessment…because what happened during surgery was just “that” big. You may end up staying in exactly what you are doing…or you may completely change…it is less about the change than the need to assess and make sure that what you are doing is worthwhile in your own mind.

18. My own personal experience was that I needed to go back to the same job just to prove to myself that I could do it. It became a way to compare and judge if I was any different on any skill. If I would have done something different right away, I would have never truly known or had a way to assess nuanced capabilities.

19. When you are digging deep in racing or training, you will pull from places of strength that were discovered in the brain surgery process. This is a wonderful feeling and makes the process poetic.

20. ...And at one year - I still have the post surgery euphoria. Life is an amazing thing and there is really not much I am afraid of at this point. You learn to deal with phenomenal adversity and see the strength of human character from the front row....or maybe even the stage. (Like Outdoor Mindset always like to say - KEEP LIVING BIG!)

- Ann Nicocelli

Amazing words of wisdom and insight for all of us, especially those going through a challenging neurological journey.
Thanks so much Ann!
jill
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