Meet-Up Spotlight: Ohio's Maggie

Meet Maggie, our Ohio Meet-Up group leader. Her connection to Outdoor Mindset runs deep and we're fortunate to have her as part of the OM family. Here she tells her story about her neurological history that has an amazing outcome... because it brought her to our organization!

"I remember one day when I was probably a junior or senior in high school. I came home from school in severe pain and instead of going straight to bed or taking a hot bath, my anger got the better of me and I decided to go for a run. I was so sick and tired of the constant pain and the feeling that I couldn't really be myself. I was fed up and pissed off. So I put on my running shoes and ran.

I don't remember running, but I do remember stumbling into the house about twenty minutes later, doubled over, pressing the palms of my hands into my forehead as hard as I could to keep myself from vomiting. I could hardly see; everything was too bright and blurry. I couldn't talk, because my own voice triggered a chain reaction, starting with the nerves behind my right eye and radiating down my spine. I couldn't eat, because the nausea made it impossible to swallow. At that point, there was nothing I could do but crawl in bed and wait it out. The next day would be the same, but about 15 hours of sleep might give me the energy it would take to make it through school the next day.

It's strange to look back over the last 10-15 years and realize how much has changed. In the days before I found an effective treatment, it was hard to even imagine spending more than a day without pain or nausea. Now, my bad days are few and far between, and I feel like I finally have the ability to be myself and do the things I want to do.

I was finally diagnosed with migraine after my family doctor put the pieces of my genetic puzzle together: my dad had mostly recovered, but had suffered from severe migraine when he was younger, and while my symptoms presented differently, they all pointed to migraine. At the time, I didn't really understand what that meant. I later learned that migraine is actually a brain disease that affects the entire central nervous system, and it explained the severe stomach pain and nausea I'd experienced when I was younger, as well as the cognitive impairment and other symptoms. Several years later, when I was in college in Kentucky, I was also diagnosed with seasonal affective disorder (SAD), which could have a connection to migraine and contributed to the severe fatigue.

During the two years I was in Kentucky, I struggled with pain, nausea, fatigue and sometimes even cognitive impairment, making it difficult to have a normal social life and succeed in school. Medications I had tried before just made me sick, and I didn't know if I would ever find a treatment that would help me be "normal," whatever that meant for me. At the time, I just wanted to be free from the pain. But I didn't realize how many areas of my life were affected until I got better.

When I transferred to go to school back home, I spent the summer working with my doctor to find a treatment. Around the time school started, I was beginning to adjust to the medication that would change my life. I was starting at a new school, with a new major and hoping and praying that this time things would be different. I didn't really like high school, so I had always looked forward to college: the chance to start over, study things I actually cared about and get the real "college experience." Kentucky had been a bust, but going into my junior year armed with a medication that actually worked, I knew things could be different.

And things

were

very different. I was no longer afraid to be around people, worried of what they would think when I couldn't keep up with the conversation or it took me an unusually long time to respond to a question. I could go to events and meet new people, because I was there to have fun, not to merely survive until I could get back into bed. I could run for fun; I could go to parties; I could even speak up in class discussions, because I was able to follow them. That's when I realized how much I had been missing out on. It wasn't just the physical pain and limitations that had made things so difficult, I had also lost my personality, my passion and my ability to make connections with other people. I literally didn't know who I was. It was almost like meeting myself for the first time; I learned that I was actually an extrovert and loved meeting new people. I found a passion for fitness, running, biking and other outdoor activities. I joined a sorority and found out that event planning and fundraising was another passion of mine. I learned photography and picked it up as a minor, because why not? I took advantage of every opportunity I could, and I wasn't afraid to try new things.

When I ran across the Outdoor Mindset

website, I had no idea there was already an organization that combined some of the things I care about most. I am now a trainer for Planet Fitness and I'd eventually like to specialize in working with clients who have neurological challenges and mental illnesses. I feel like I can relate to some of the challenges that those with neurological diseases face, and I know from experience how exercise can change lives.

I also know how important it is to be surrounded by people who care and support each other, especially when you're facing a chronic illness or disability. I was lucky to have my family and a few close friends by my side while I struggled with my illness, and I don't know what I would've done without them. That's why I'm so excited to be a part of Outdoor Mindset and grow a community in Ohio. Through outdoor activity and social connections, we CAN make a difference in the lives of those with neurological challenges!"

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

"Movement is a medicine for creating change in a person's physical, emotional, and mental states." ~Carol Welch

To be honest, I have no idea who Carol Welch is, but I think her quote represents well the spirit at last Sunday’s Strides for Epilepsy event. With over 2,000 people registered for the 5K run/walk, City Park in Denver buzzed with energy despite the almost constant downpour. People diagnosed with epilepsy and their friends, family, and health care providers came together to not only support the efforts of Epilepsy Foundation – Colorado, but to laugh together and feed the mind, body and soul through movement.

Outdoor Mindset is grateful for the opportunity (thank you, thank you Epilepsy Foundation-Colorado and Gail Pundsack) to outreach to folks at the event. After all – we believe in connecting people through a bond of shared diagnosis and outdoor adventure. Lucky for us, the cold, wet weather did not deter those supporting Epilepsy Foundation-Colorado.
We chatted with lots of people, made plenty of friends, gave away over 500 stickers and business cards, and cheered on our own Team OM (the brave Kellyn Glynn and Kyle Martin).

According to http://www.epilepsycolorado.org, epilepsy affects people of all ages and races, and represents one percent of the population in this state—over 43,000 people. Three million people in this country and 50 million people worldwide have epilepsy. While epilepsy is not the only neurological diagnosis that Outdoor Mindset embraces, it certainly hits home with many of our friends and family members.

Our first debut to the public went well and we look forward to many more outreach and partnership opportunities. Please let us know on Facebook if you met us at the Strides for Epilepsy event. We want to hear from everyone as we build our online community and shape the programs of Outdoor Mindset. Summer will officially begin soon and we hope to see you out on the trails, on the water or wherever adventure may take you. Keep on movin’ and may the outdoors be your medicine!