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

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

Going the distance....together.

13.1 miles is a long way to run. I've never tried to do it and am not sure I ever will (please don't challenge me). But with summer in full swing, it turns out that our OM Members are in full swing, as well, and are tackling some huge outdoor adventures together - like running marathons. Some people may think that a personal match made between two people on different sides of the world may be a bit hectic and unorthodox. However, we think when you have something in common as personal and important as being a supporter and caretaker of someone with ALS, it closes the distance and makes it feel like the other person is right there for every step of the next journey together - even if that is training and running a marathon. That's what Julie (in Sweden) and Jan (in Colorado) think, as well. But I'll let Julie fill you in on the rest and give you a bit more background... and stay tuned because there's more to come soon! ~Jill

Here's the full download from Julie: 

I am not a runner. I didn't even like to run.  So naturally I've signed up for the Stockholm Half Marathon on September 15, 2012. This is my story.

My mother died of ALS in Oct 2005. I was very involved in her life battling ALS, in general, but specifically while she was in her last few years combating the disease with strength and hope. Ever since then I've wanted to do something to help raise awareness and money towards a cure for ALS. First I needed to heal and step away from my personal experience for awhile. I needed to let my mind and body live life again - happily without worry, pain or fear of how my mom is doing that day and what I might face looking into her eyes but still needing to smile and laugh with super human strength. I come from a family rooted with love, good values and a foundation stronger than most. A family that has faced challenges, adversity and euphoric times; who's core has been shook but is strengthened by facing challenges head on and believing in positive energy, living a life that makes a difference. We believe it's how you live life that really matters.

So I fell in love, got married, moved to a few countries, worked, had a few kids and breathed fresh air again. I am proud of my two children and family, in love with my husband and love where life has brought me today - the journey and all. I am 37 years old and from New Jersey but now living in Djursholm, Sweden (a little town outside of Stockholm). As I was emersed on Facebook, I saw a friend's post about this wonderful organization called

Outdoor Mindset

. It's an organization who's mantra is: to unite and inspire people affected by neurological challenges through a common passion for the outdoors. It screamed my name and therein began the end of my search of figuring out how to raise awareness for ALS. I emmersed myself in the website and immediately signed up and reached out.

The road ahead... running!

Being that OM's mantra is uniting people affected by neurological challenges; they immediately connected me to another woman, Jan, who lost her Mom to ALS. Together Jan and I will be running in separate races across the globe from each other - she resides in Colorado, I in Sweden- to help raise awareness and funding together towards a cure for ALS. Please join us on

this blog

to follow our journey and get to know us on our mission to make a difference and find a cure for ALS. We will also be raising funds for the ALS Association on their website,

here

.

Now the best part is going to be following us on our path as we run in our separate races across the world while trying to raise money and awareness for ALS. We will share our emotions as caregivers and daughters of people with ALS. We hope to reach others affected by ALS or any neurological challenge on our blog. Oh, and there will likely a few belly aches and pains as we train and keep it real.

I'm not exactly a natural runner but I figured if my mom can endure a 5 year plus battle with ALS with superhuman strength, head on and with relentless hope then, well, I can run a half marathon. I hope. I thank goodness I have Jan, a natural and professional at my side helping me as she trains for her two races in August and October.

At least the view is nice in Sweden!

So I'm running. I'm running to support my fellow OM member Jan who's in CO running for the same reasons I am - our buddy support system.  I'm running for all of you living with ALS, for all of you with a loved one living with ALS, for all of you that have lost the battle to ALS, for all of you that know what ALS is and want to give it the big finger and for all of you that want to take the stairs but have to take the elevator because of ALS. I'm running for you, Dad, who would've gone to the poorhouse (and I think almost did) figuring out how to fight this disease for her with all of the homeopathic, holistic and cutting edge non-insured covered drugs and procedures with the hope of saving your love and soul mate. I'm running this for you Mom - my inspiration on how to fight and live large until the end.

Follow us along as we train. And if you're now intrigued, check out the

full Outdoor Mindset site

to understand all that this wonderful organization does to help people affected by a neurological challenge and why getting outdoors in any shape or form can heal. There are many ways to be involved. Perhaps you may want to join too?

~Julie

Can Do? YES YES YES!

We are so excited to announce a new partnership with Can Do Multiple Sclerosis, an organization we have greatly admired from our creation and along every step of the way. Can Do MS

is a leading provider of innovative lifestyle empowerment programs for people with MS and their support partners. Leveraging the powerful legacy and principles of former Olympian and organizational founder Jimmie Heuga, Can Do MS has helped thousands of people living with MS reclaim a sense of dignity, control and freedom by empowering them with the knowledge, skills, tools and confidence to transform challenges into possibilities.

What inspires us most about Can Do MS, and probably what connects us most deeply, as well, is their positive outlook on living with a neurological challenge. They say that by focusing on what you can do, their programs can provide a whole new way of thinking about and living with MS. And now, as a partner of Outdoor Mindset, we can focus on ways to do this together to serve all of our members!

We've made some great strides on being able to serve our community of MS Members, and our partnership with Can Do MS is going to provide us even more opportunities and insights on where we should go next. 

Here's a great story from one of our Outdoor Mindset Members and Guides living with MS, with a serious 'can do' attitude, who recently enjoyed a great hike with through OM Meet-Up Groups:

Sandy joined Outdoor Mindset looking for some hiking partners. Sandy is a massive and serious hiker and after being diagnosed with Multiple Sclerosis, continued her hiking passion using forearm crutches (along with doing some other awesome adaptive sports like monoskiing and handcycling!) She says she's still a pretty serious hiker, although she's had to adjust her expectations a bit with a slower pace. She's had trouble finding hiking partners because her pace is a little slower than the average hiker, however she can seriously hike all day - like 11 miles!

Sandy attended a recent Outdoor Mindset Meet-up Group doing the Twin Lakes Hike near Boulder, and here's what she had to say after:

"It was so wonderful for me to have such great company for a hike in one of my favorite places in the world. And I think we were so well matched as far as hiking ability! And how wonderful to have hiking companions that were not freaked out by my crutches and I wasn't the weird, disabled one trying to keep up with the able-bodied folks. Instead, I just was one of the group and it was so very lovely. Thank you so much for setting this up!"

And Sandy wasn't the only one feeling inspired that day. Another hiker from the Meet-Up group wrote in:

"It was good to spend time with others who have similar conditions.  And what an inspiration Sandy is -  wow."

I'd say that was a pretty exceptional day for all! We are SO thrilled to be able to help nurture this experience between our Members and can't wait to spread the love with Can Do MS, as well!

Don't forget to check out our Meet-Up Groups in:

Boulder, CO 

Hanover, NH

Cincinnati, OH 

...and more to come!

Jill

Sometimes you just need a giggle!

Life can be stressful… I don’t think anyone would deny that statement. With a dog post-ACL surgery waiting for me at home in a cone (which she hates!), the expenses and stresses of moving to a new town, and what seemed to be a slew of lame things happening to my friends weighing on my mind, I was walking home from work one evening when I passed the Bozeman Center for the Arts and noticed a strategic piece of graffiti that brought a smile to my face. Someone had spray painted a ‘F’ in front of the word ‘Arts’ on the sign outside the building so that the sign read “Bozeman Center of the Farts”. Immature – yes. Vandalism – also true. Funny – without a doubt! I found myself laughing the rest of the way home, and

MAN IT FELT GOOD

. For me, sometimes I just need a good laugh to help turn my mind and my day around, and I know the others on the Board of Directorsfor Outdoor Mindset feel the same way. That is actually one of our main values

we wanted preserve when creating Outdoor Mindset, to incorporate humor in all that what we do. We want to make people laugh and smile, despite any other neurological craziness going on in their lives. Sometimes we can be quirky… would anyone agree with that? I mean have you seen the video we submitted for the

Cultivate Wines Non-Profit video contest, The Give

(Oh yeah, and also, please vote for us here every day from now until June 30th so we can win some moolah to spend on our Members!) I don’t think you could NOT crack a smile when a suited up Kyle Martin comes rolling down the road towards the camera and then almost runs right into the thing (right at the 1:15 mark for anyone who may have missed it. Your welcome, Kyle.)

So please, try to have a giggle. Sometimes you can’t just go out and find it when you need it, so let it find you, too. No matter what’s going on in your day, in your week, or even in your BRAIN, try to find a smile or some laughter somewhere out there because I promise it’s going to make you feel better.

“The most wasted of all days is one without laughter.”

- E.E. Cummings (<< See, it's not just me that thinks so... this famous guy backs me up)

Laughing all the way,

Jill

Still in the Game

Greetings Outdoor Mindset friends - I hope you all had a fabulous weekend!

Everyone always needs a bit of inspiration on Mondays, and I have just the story for you. Today we have a guest blog from Outdoor Mindset Member

Don, who is an avid lover of the outdoors and the sport of hunting.  Don also has debilitating Multiple Sclerosis. Don's attitude, similar to that of Outdoor Mindset's, is that nothing is going to stop him from doing what he loves, and he's broken down many barriers and hurdles to make that happen. I love the title Don has given his blog - Still in the Game - because that's exactly what he is... still in the game, and a major player at that! Don't ever forget that you are ALL (neuro challenge or not!)

always

still in the game, and take strides to make sure you are a major player, just like Don.

Still in the Game

It's been several years since I've put together my story so when I was asked by my new friends at Outdoor Mindset to write something up for their blog, it took more serious thought than I expected. I do my best pondering in the woods so I'll head out to a little strip of high ground between our food plot and a pond. That's where I'll begin my tale.

As I absorbed the peace that is so often my companion when I'm in the outdoors, my thoughts turned to the road I've traveled to get to this point in my life. A person never knows which way the path will lead. We encounter many forks along the way, some of which lead to good stuff, some bad. Either way we live, learn, and move forward. Sometimes the path is smooth but often it's just plain rough and feels uphill all the way.

Finding out you have a serious illness makes a pretty nasty bump in the road. Living with the progression of that illness is rough. When we are faced with something like that, a person has two choices. We can either give up and crawl under a rock or we can play the hand we are dealt. I choose to play.

My struggle with a physical disability started in 1996 when I was diagnosed with multiple sclerosis. My world was shaken. Suddenly my future was uncertain. I was 31 years old with a growing family and a solid career path teaching and counseling that I truly enjoyed. Thinking back, there really was no choice. It simply needed to be faced and that was that. My wife Leann and I waged a silent battle against the disease for some reason not wanting to burden any family or friends unless we absolutely needed to. That time came all too soon and by 2004, I could no longer function well enough in my job and needed to go on disability. My mind was fine but I was down to one usable leg and one arm. Combine that with dizziness and fatigue and I wasn't doing my students much good anymore.

Going on disability felt like giving in but there were no other options. Thankfully I had some time to prepare things so I could still be in the woods and not trapped in the house! Still… I needed some serious soul-searching to find a new direction. I began to help Steve, a buddy of mine who worked for Babe Winkelman Productions. Babe helped me get started with voice-recognition software and I communicated with folks calling in looking for information about hunting and fishing opportunities around the world. I

would put them in touch with outfitters who could offer the services they were looking for. Interesting work and I met lots of great people but I knew it wasn't the direction I was meant for.

I was visiting with Steve and he made an interesting suggestion. He said that since I was already researching ways to stay in the woods or on the water maybe I should use my computer knowledge and find a way to share that information with others. I asked him to tell me more and he suggested I build a website to share some of my information. He said "you can't do things the way you used to but what you do is a far cry from sitting on the couch watching hunting shows and wishing"

At that time, information about the outdoors for someone with a disability was all but impossible to find. My wife and I sat down together and figured out how to put the information I had gathered for myself in a format that others could use. It wasn't long before we had a small working website named

afarcry.info

with some basic tips and tricks I had found to be useful. One thing led to another and the site grew almost faster than I could keep up. I'd research things and talk with outfitters during the day and my wife would get home from work and we would add them to the site. Soon it was all I could do to keep up with the calls and e-mails but I was loving it. I had a direction and was doing some good!

Meanwhile, MS was taking its toll on my body. I kept losing ground and wasn't far from being bedridden when the drug Tysabri became available. It was risky because the main side effect was death but the alternative was spending the rest of my life in bed. I couldn't do that as long as there was any option at all. I took the chance and never looked back. So far so good and it's been about six years as I write this story.

As always, there are good days and bad days. I always used to tell people that I would hunt as long as I can pull the trigger. When that day came and my hand could no longer squeeze hard enough, it hit me hard. I came back to the house feeling about as sorry for myself as was possible. Imagine how pleased I was when I got my first sip and puff trigger and could do it with my mouth! It's been five seasons now in which I harvested my deer without lifting my hands from my armrests.

That gives you an idea where I'm at. I am a quadriplegic so things are different than they were when I was able bodied but I've become so much more than I ever was before. I can’t walk but I can and do have a positive impact on so many people. I firmly believe the quote "that which does not kill us only serves to make us stronger". What happened to me could happen to anybody. Whether it be an accident, illness, or other catastrophe, the issue is not what happens to us but what we do with it. If you are new to the game, come on in, and we'll make the most of life together!

Don

Chapter 2

I blinked and somehow more than ten years have passed since I wrote that blog for Outdoor Mindset. 

My original intention was to add a few paragraphs to bring the story up to date. However, there have been so many changes and so much water under the bridge that I cannot bring myself to modify the honest feelings I wrote in that story. I will have to simply sit down and write chapter 2 to bring my readers up to date. While I truly appreciate your attention and your patience when I become long-winded, I will do my best to keep this as brief as I am able. I can certainly understand the difficulties faced by directors when they try to portray a good book during an acceptable runtime for a movie.

Overlooking the Chagress River in Panama

Tysabri kept my MS under control for another year and a half after the end of chapter 1. My worst fears were realized when the side effect of death suddenly became imminent. With only a year to live, I was forced to expand my search for a cure beyond our borders. My family, my friends, and the whole hunting community came together to send us on a trip to Panama for a life-changing stem cell transplant. That brought into my life an unforgettable year of miraculous improvements to my abilities. Among the changes were things like motion returning to my right arm that had not moved in seventeen years, improvements in vision, thinking, and the list goes on and on but that’s another story. Suffice it to say that the changes were awesome in a disease that allows for no improvement.

Shooting from my standing frame 

As the positive changes happened, there were several changes in my family dynamics and I found myself divorced and living on my own dependent upon a team of caregivers working hard to keep me in my home. Just a few years after the successful procedure, I once again got very sick. My kids traveled home to stay by my side during the terrible life-and-death struggle with Guillain-Barre. For weeks, I lay in a hospital bed without vision and struggling to communicate through lips that were paralyzed. Thankfully that storm finally passed and I began to focus once again on my struggles with MS. We traveled once again to Panama for another stem cell transplant with the hope it would counter the effects of the Guillain-Barré. My second treatment brought a new set of exciting changes to my life. My body’s ability to control its own temperature returned to normal and my strength and mental clarity improved dramatically.

Fishing boats in Panama are not very accessible

Throughout the roller coaster ride that has become my life, I learned to do my best to keep up the good fight and to enjoy the blessings that come along as part of every day. My little girl is all grown up now but she travels home from Washington to spend every deer season with her dad. That gives me some of the finest moments life has to offer throughout the year. I still shoot with my faithful mouth control for both crossbow and gun. I have found it is more than just possible for a quadriplegic to consistently harvest nice whitetails, turkeys, pheasants, and even to catch some pretty great fish. I manage my own team of caregivers and lead a happy and fulfilling life still trying to leave world a little better then I found it.

My daughter and I in the deer stand

I am most defiantly still in the game. If you are as well, give me a shout. I love to hear and maybe share your story. If disability is affecting your ability to enjoy the outdoors, give me a shout. I’d love to help.

My first Tom from a wheelchair

Is that just the dose of inspiration you needed on a Monday? Now get out there, get involved, and get cranking on something awesome.

Jill