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!"

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

Is OutdoorMindset a beneficial organization?

An obvious YES is the answer to the title question! And before anyone gets offended by my title, let me explain. It was clear from the beginning that the general purpose of OutdoorMindset would be to focus on connecting like-minded people with a passion for living big, overcoming obstacles, and being active outside. During some of the early stages of development it was brought to our attention by our non-profit gurus (Jake and Jeanie) that just because we felt strongly about our vision and the purpose of OutdoorMindset, the government was going to need some proof that OM would help. In other words, we had to define our “Need”.
This has been a very important aspect of our development and we have all worked really hard to back up our vision with scholarly research. We broke down the research into 3 important aspects of OM -physical activity, social connections, and Internet use. As you can imagine there is a plethora of information and research out there on these topics, so as we narrow down our findings, I’ll keep the information coming.
To no surprise at all, we were able to find support in the articles that physical activity is beneficial to health. To take that common known fact further we dug a little deeper. Research studies have also found that people who engage in physical activity are more likely to have hopeful feelings about their future and reach goals they have set. Studies have also found that physical activity not only improved physical health but also improved mental health shown by a more positive attitude and confidence in oneself.
In another study the effects of Green exercise were evaluated. That study defines green exercise as any activity done in the presence of nature. Green exercise improves self-esteem and mood, as well as increases positive long-term and short-term health benefits. Green exercise is exactly what OM is all about!
Many studies have found that participants who engage in exercise on a regular basis have a higher health related quality of life and show a slower decline in general quality of life. In relation to mental health, it has been shown over and over again that exercise and physical activity are related to lower levels of depression. Engaging in physical activity increases the amount of neurotransmitters, monoamines and endorphins, i.e. dopamine and serotonin, being released from the brain. These neurotransmitters are related to positive feelings and the pleasure senses of our brain, thus increasing positive mental health.
As you can see from our research findings, there is definitely a positive relationship between physical activity and both physical and mental health. Being active is a main focus of OutdoorMindset so we are thrilled to have the information to back us up in that area. Being a research nerd who gets excited about reading small black and white print, I am beyond ecstatic from our outcomes thus far and I can’t wait to explore the other topics. More good news to come!