NeuroActive Foundation’s mission is to provide grants to individuals with neurological disorders, including costs of medical bills, rehabilitation, fitness, nutrition, or other necessary resources to help them get back to an active lifestyle and be contributing members of the community.
NeuroActive Foundation was founded in 2014 to provide help for people with neurological disorders. After costs of medical and surgical treatments, most people do not have the means to pay for additional care outside of their insurance coverage. NeuroActive Foundation provides grants to these people in order to allow them to approach their health from a perspective outside of the typical medical treatments. Whether it is physical therapy, nutrition counseling, personal training, or another form of wellness therapy, we want to help people strive to not only be alive, but also live an active lifestyle.
The NeuroActive Story
Brooke Conway, President
It’s easy to believe something after hearing it a thousand times, especially when the words are coming from someone of authority. Even if you don’t quite believe it at first, your brain has a funny way of convincing you to start second guessing yourself after years of hearing the exact same thing. Maybe that didn’t ever happen, maybe I imagined it, maybe, just maybe, they are correct. This is the psychological state that I was living in two years ago. After being diagnosed and treated with a thyroid tumor at the age of fifteen, I never again felt normal, or whatever normal consisted of at that time. Over the next eight years, symptoms would slowly progress. At first I was really tired with occasional headaches. Then I began having severe chest pains, accompanied with dizziness and occasional fainting. Difficulty completing a workout. Circulatory issues. Lack of concentration. The symptoms turned into something that resembled a list of power words you’d use for an interview. By the age of 20, I had more numbers of doctors in my phone than Facebook friends, but the closest thing to a diagnosis came down to one of two options. 1: I had my thyroid removed at a young age, and would just have to learn to deal with hormonal issues the rest of my life. 2: I have a Type-A personality, and tend to put myself in high stress situations, causing my body to exhibit psychosomatic symptoms. Or more simplistically – it was all in my head. Every doctor would begin with a gauntlet of tests, each one more certain than the last that they would figure out what was wrong. If nothing would come up from the test, which was usually the case, the doctors would quickly turn to one of the two options above. I eventually swore off doctors and the medical world, knowing I wasn’t actually crazy and it would take me lying dead on the ground before someone would realize something was wrong. Granted, looking back now, that wasn’t the most proactive approach, but it got to a point that I felt like I didn’t have any other options. And to be completely frank, I was mentally and physically exhausted.
I was sitting on the couch one night in January of 2013. It was an ordinary Friday night watching movies with my boyfriend. However, when we got up to go to bed I was unable to move my legs. From the waist down I couldn’t move a single muscle, no matter how hard I told my body to try. Frantic and not knowing what to do, Elliott ran to the phone to call an ambulance. At this point in my life, I was still swearing off doctors, especially those relating to emergency rooms. The end result was always the same: arms that looked like pin cushions, zero answers, and enough medical bills in the mail to make any eco-friendly person have a heart attack. Needless to say, he promised to not call 911. I just needed to be carried to bed and sleep it off; everything would be fine in the morning. Again, I realize now that this was probably another instance in my life that would be considered “not fully rational”.
A few days after that night, Elliott made me promise that I would start taking care of myself. For no other reason than to make him happy, I agreed and made an appointment at the Mayo Clinic for the following month. That conversation was the beginning of what I now consider to be a new chapter in my life. My mom and I spent a total of a week at the Mayo Clinic, and I was again about to leave with very few answers and rapidly losing hope. The last day there, I was determined to leave with some sort of answer, so the two of us sat in the waiting room of the neurology clinic for five hours until one of the doctors had a no-show appointment. After more rounds of tests, I was told that I had a small brain tumor. As if that word made it all better. Small. It wasn’t significant, they told me, because it still didn’t provide an answer to the majority of my symptoms. The best thing to do is to keep monitoring the small tumor and see what would happen over the next few months. This answer didn’t sit well with me, so after returning back to Vegas, I made an appointment with the only doctor I had any faith left in. My story triggered a light bulb moment, causing him to literally run out of the exam room and return a couple minutes later with his assistant. He explained how she used to work for a neurosurgeon who dealt with cases like this, but it was very rare and he couldn’t quite remember the name of the condition. After what seemed like a whirlwind of a week, I found myself seeing this neurosurgeon that was previously mentioned, and yet another week later found myself laying in the hospital about to have my head shaved for my first of soon to be five surgeries.
I found out that I have a birth defect called a Chiari malformation. Symptoms are either present at birth, or in my case, don’t show until later in life, typically around puberty. Nonetheless, I was ecstatic to have some sort of diagnosis. I could finally smile because I knew that I had been correct all of those years, and could laugh at every doctor who said it was “just in my head”. Little did they know that they were actually onto something with that theory.
The following year was a series of rollercoasters, with many of my symptoms becoming worse after the first surgery. I remember Thanksgiving night of 2013 like it was yesterday. My headache was dull and irritating all day, a little worse than what was typical at that time. Elliott and I got home from dinner at his parents’ house and all I remember was blacking out and then having a severe headache that wouldn’t go away. I remember later telling my doctor that it was so bad, he could have cut my leg off and I wouldn’t have known the difference. I was uncontrollably shaking and in a cold sweat, but unable to move.
Something didn’t feel right after that night, and I was back to doctors giving me very little for any reassurance. I found out that my neurosurgeon in Las Vegas completed his residency under a specialist who is now living in North Carolina, and he only takes on specific cases. I was able to get an appointment with this new specialist later that month, and I soon found out that the event on Thanksgiving was actually a stroke. I ended up having another four surgeries over the following year.
I remember laying in the hospital after one specific surgery, unable to see due to swelling in my brain, just praying that things were going to get better. As these thoughts were going through my mind, my neurosurgeon came in for his daily rounds and decided to sit down and talk with me for a while. After completing a quick physical, he noticed something was bothering me. The small words, are you ok, released a floodgate and everything came pouring out. I don’t remember much of my sobbing mess, but what I do remember was his calming demeanor and reassurance. He was the first person to make me feel like I wasn’t crazy, and more importantly, remind me that I was going to be ok. He told me that I was lucky that I had remained so active through everything. Otherwise, a lot of factors over the past year could have changed my life dramatically, or ended it all together. At this point, I promised him and myself that I was going to make a difference in the medical world. I promised that I was going to find a way to help people, to teach them that an active lifestyle can literally save your life. I wanted to make a difference in someone’s life the same way that man standing in front of me had just changed mine. Because of him, I promised that I would start a nonprofit to help others with neurological conditions. I promised that I would give everything I have to make a difference. I promised that I would do whatever possible to avoid another person in the world ever feeling like they are crazy.