Friends in Low Places

I’ve loved hearing about Robin’s (Julie's mother) attitude towards combating ALS.  Dealing with a neurological challenge as the diagnosed, or as a supporter, is never a welcomed challenge, but it can bring small gifts such as hope and a desire to push ourselves just a little bit harder.

Outdoor Mindset members are a tough bunch. Our group includes people with Parkinson’s who are learning to run, people with MS who will crutch for miles driven by their passion for the outdoors, people who are adjusting their love of skiing or biking by learning to use equipment that allows them to keep moving, and more. We are a group that does our best to always keep going, and encourages others to do the same. 

I can see that determination in Julie’s mom. In this next entry, as Robin rounds the kitchen island with a hero’s determination, she keeps going as best she can, in the best way she knows how- with friends, family, and laughter surrounding her.  

I can also see that determination in Julie. As she runs and writes, she opens up and develops her understanding of how her entire journey with her mother is shaping her into who she is today.

Week of August 27: 

The Baltic Sea

I'm out there running on the rim of the Baltic Sea. It's possibly the most motivating place to run. It's pretty dark and cold here in the winter so when summer comes and it's finally warm it's so freeing to be outside. It's the perfect time and place to start this running adventure of mine.

I spoke to Jan, my Outdoor Mindset running buddy. It's so nice to have support from her about what to expect on my long runs, how my body will feel and what to do about it. Today was a long one so not only did I pull from her training tips but also from her strength as a woman who has also dealt with ALS with her Mom. She's an inspiration and it just makes me want to run longer to do all I can to help.

As I run, I know my Mom is there looking down on me. That may sound weird but I do go into that sort of deep thought as to why I'm doing this while on mile six when my legs aren't loving me. She'd be the loudest screamer for me on the running path. She was my biggest fan when I was a swimmer growing up. I swam all the time; it was my passion as a kid, my sport. I wasn't the best at it but I tried to be. I still have video of my old swimming days and her in the background screaming. Kinda funny. You would think I was about to win the Olympics at how loud she could get those pipes going. But to her it was her kid about to beat another kid in a race, period. It mattered to her.

Yep - Bubble Butt!

My mom was using a walker for a long time and eventually graduated to a motorized wheel chair. Every day she would try and walk with the hope of not needing either eventually. We had this island in the middle of the kitchen and she would do “laps” around it: trying not to hold on. One day one of her friends, (we called her friends “sisters” or “circle of friends”) came over with a little bubble machine that was this funny contraption of a guy that pulled his pants down and shot bubbles out of his butt. Immature but it made us all laugh.  So, she would round the table and get back to the end where bubble butt was and laugh again at the success of her rounding the table, at bubble butt. This is a new definition of “friends in low places” thank you sisters!

So this was her exercise. Her biggest obstacle in life. Her hope. If she rounded that table without holding on somehow she thought (and therefore we all thought) perhaps this is just a funny phase in life and will pass. Perhaps it's just an ailment for this month and each day she'll round that table again and again until she's back to normal. Perhaps.

She tried each day. Each day my Dad would be grounded, positive and take it moment by moment and hope. Each day her friends showed up with a new trick up their sleeve and we laughed.  Each day they showed up with hope, ready to make her laugh, ready to listen, ready to hug away her tears and fear.

So I continue to run.  It makes me realize that I'm not sure I could live sanely without some sort of exercise in my life. It keeps me whole and centered. And wanting to help others fighting a neurological disease, get outside and benefit from that feeling.  And I'm feeling good. I think it's due to my overpriced fancy new running shoes. But they are cool. Stay tuned.....

Thanks for reading.

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

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