Oklahoma State Students “Dream Big” to Raise Awareness and Funds for Narcolepsy Network

Dream Big Concert Logo-Small

On February 15th, 2013, Oklahoma State’s Union Theater will host the aptly named “Dream Big” benefit concert to raise narcolepsy awareness and funds for Narcolepsy Network. With performances by several talented students involved in the campus’ Greek community, this concert is sure to be a big hit. To Megan’s knowledge, this is the first time that a student has organized a benefit show.

Megan was diagnosed with narcolepsy in August of 2012 after experiencing symptoms for ten years. “When I was diagnosed, I was relieved, but at the same time, I was confused and angry. I was relieved to finally have an explanation to why I was tired all of the time and that it wasn’t because I was lazy or didn’t care about my friends. I was confused that day because I did not experience the sudden sleep attacks as I thought every [person with narcolepsy] did.”

Witnessing the struggles Megan faced daily, and knowing how long she’d waited for a diagnosis to explain the excessive daytime sleepiness she experienced, Megan’s boyfriend Kevin quietly began planning an event to raise narcolepsy awareness and provide funds to benefit the Narcolepsy Network. He gave Megan teasers, telling her that he had a “long-shot” idea. Finally, after enough pestering from Megan, Kevin told her that he wanted to host a narcolepsy benefit concert. Touched by the support of her boyfriend, Megan broke down in tears.

“Kevin chose the Narcolepsy Network because he wanted to send the money to an organization that focused on awareness and research. He knew that I, and many other people with narcolepsy, was diagnosed after living with it for over half of my life. He saw the impact that it had on me daily, so he decided that the money and concert should help raise awareness for others who may be living with it and not knowing it!”

kevinandmegg

Megan’s sorority, Omega Phi Alpha, is taking care of selling tickets, passing out flyers, ushering guests, and other supportive tasks, but all of the organization of the show itself was done by Kevin. When asked what she hopes people gain from the concert, she replies, “I want people to learn that individuals with narcolepsy are not lazy and that they are not over-exaggerating when they say they are tired. People with narcolepsy want to live their lives and be successful, just like everyone else, but it is difficult to do because they [constantly want] to sleep. People with narcolepsy are not stupid either, but they may not be able to form the sentences that they wish they could because of the extreme sleep deprivation they experience. I just want people to learn to be patient, and to try and understand what we go through every day.”
If you’d like to donate to the Dream Big event, you can do so by visiting their donation page. You can also donate directly to Narcolepsy Network by clicking here.

Thank you, Megan for letting me share your story, and a huge thank you to Kevin for organizing such a wonderful event for Narcolepsy Network!

Are you hosting an event to raise awareness or benefit an organization supporting people with narcolepsy? I want to hear about it! E-mail me at stridesagainstnarcolepsy.com.

Comments

  1. Shelby Burt says:

    I would like to go to the Dream Big benefit. How much is it? How do you go about getting tickets?

    • admin says:

      Let me find out for you. Are you a student at Oklahoma State?

    • admin says:

      Shelby,

      Here is some information about the Dream Big Concert at Oklahoma State
      Date- Friday, February 15, 2013
      Location- Student Union Little Theater on campus
      Time- 7:00 p.m.
      Cost- Tickets will be around $5 each
      Performers- Some of OSU’s most talented students

      If you have any other questions feel free to email dreambigconcert@yahoo.com.

  2. lisa hayes says:

    Admiration/respect/proud. These are a few words that spring to mind. I think that’s a great way forward to promoting more awareness and raising money; because I totally understand the frustration when people don’t fully understand the effects narcolepsy/cataplexy have on sufferers. It becomes mentally exhausting and depressing somedays when friends/family/colleagues know what the medical condition is, but still don’t understand the full extent of what living everyday to a routine is like, and when you do something different ie. Go out with them; out of your daily routine, they then wonder why we have cataplexy attack/narcolepsy

  3. Megan O'C says:

    Way to go Megan and Kevin. I was diagnosed with Narcolepsy right after I graduated from college (how I made it through awake is beyond me!). 11 years later as a mom, I am so glad to see someone taking a huge step towards helping others become aware of what we suffer through daily!

  4. Natalie says:

    This is so exciting! To have something in Oklahoma supporting NP is wonderful! I feel so alone & look forward to connecting to other NP!

  5. Holly says:

    My daughter was diagnosed a year ago. She is planning to attend OSU when she graduates. She is a junior at Edmond North.
    I would LOVE to find a support group in Oklahoma. I feel alone in this, and I know she does too. No one understands, unless they live with it or have a loved one who does.
    I so wish I would have known about the Dream Big Concert!!! Please keep me informed of anything else being done in Stillwater or anywhere else in Oklahoma concerning Narcolepsy!
    God Bless~ Holly :)

  6. Natalie says:

    Just curious what doctor you go to for narcolepsy? I am having a difficult time finding one that seems to know much about narcolepsy. I am so beyond frustrated!!!!

  7. Natalie says:

    Looking for a good doctor! HELP!!!

  8. Berkly says:

    Holly,
    How did you go about getting a diagnosis for your daughter? I am 99% sure I suffer from Narcolepsy, but I am not sure where to begin as far as getting officially diagnosed. I have seen a psychiatrist (because I was seriously starting to believe that I was depressed or even just plain crazy) and he put me on adderall to help me stay more awake and alert during the day, but he never even mentioned the possibility of narcolepsy. Thankfully, the adderall has really helped, but I would like to know for sure if this is really what I am dealing with. I made an appointment with a neurologist for May 22nd, and I’m hoping that he might be able to provide some much needed insight, but I would welcome your input as well, seeing as you most likely have an intimate knowledge of this disorder.
    Thanks so much.
    *Oh, and “Go Pokes!” I am an OSU alum myself! :-) 94-98

    • admin says:

      Hi, Berkly!

      I’m not Holly, but I thought I’d answer your question in case she doesn’t check the comments on this particular post on my blog again.

      I’m so sorry to hear you’re suffering with from excessive sleepiness. It makes functioning difficult to say the least. It’s really unfortunate that your psychiatrist does not know anything about narcolepsy. When my younger sister was taking psychology classes in college, there was at least a tiny blurb about it in her textbook. I’ve also heard of other people with narcolepsy going to a psychiatrist who were later referred to a sleep doctor because of their symptoms.

      You’ve done the right thing by making an appointment with a neurologist, but do you know if this particular neurologist treats narcolepsy patients? Does he or she specialize in sleep medicine? You may want to double check before you spend the money on the appointment. It may be a better idea to go to a sleep specialist who is also a neurologist. When I went to the sleep specialist/neurologist, they gave me the Epworth Sleepiness Scale test along with a rather thorough packet of questions, symptoms, medical history, etc. After going through my paperwork and talking with me about my symptoms, he suggested an overnight sleep study called a polysomnogram (PSG) followed my the Multiple Sleep Latency test (MSLT) the next day. The PSG was to rule out sleep apnea and to get a picture of my nighttime sleep. The MSLT is a test that can help quantify excessive daytime sleepiness, and it can specifically indicate narcolepsy if REM is present in two or more naps. During the test, the patient is given 4 or 5 opportunities to nap. To be diagnosed with narcolepsy, the sleep latency should be 8 minutes or less and two naps should contain sleep onset REM periods (SOREMPs).

      Have you done any other research on narcolepsy? Are you aware of a symptom called cataplexy? If so, do you think you have cataplexy?

      I hope this helps. Please let me know if you have any other questions. Feel free to email me, too, if you do not want to ask them publicly. stridesagainstnarcolepsy@gmail.com

      Hoping you get answers soon!

      Heather

      • Berkly says:

        Hi Heather,

        Thank you, thank you, thank you for your response! (And thank you for undoubtedly saving me valuable time and money!) I just cancelled my appointment with the neurologist, as he does NOT specialize in sleep medicine, and rescheduled with an in network physician who does! Thankfully the appointment is only one day after my previous one was scheduled!

        I was suprised, to say the least, when my psychiatrist prescribed adderall, since I had always associated it with ADD/ADHD, and certainly don’t display any symptoms that line up with either. I actually researched it further on my own, and that is how I stumbled upon the info regarding narcolepsy. In my ignorance on the subject, I had always associated it with the most dramatic symptoms such as sleep attacks and temporary muscle paralysis. It never occured to me that it could present itself in less obvious, but equally debiltating ways!

        I don’t recall ever experiencing any blatanty obvious cataplexy, but I have noticed that during extremely emotional moments, my facial muscles definitely sag (I have been asked why I am scowling numerous times when I didn’t even realize I was) and sometimes it is difficult to hold my head up. The most disturbing and disruptive part is the sleepiness though. I feel like I am always tired. It is especially difficult at work fighting to stay awake and be productive at my desk when all I want to do is take a nap. Some days are just miserable. I can literally sleep 10-12 hours at night and still feel exhausted the next day. That being said, I am just thrilled to (hopefully) be on the path to getting some answers!

        I certainly welcome any other suggestions and will make sure to update here after I see the dr. on May 23rd!

        Thank you again, and God bless you for starting this blog! Praying for answers that could potentially help someone else “like me”!

        • admin says:

          Oh, you’re so welcome! I’m so happy to be able to help. There are so many people “like us” who go undiagnosed for far too long. I, too, associated narcolepsy with simply dropping off to sleep at inopportune moments. I didn’t realize the complexity of the disorder. It wasn’t until my neurologist suggested it that I started to look at the symptoms and immediately knew it was worth the testing that was suggested.

          The slackening of the facial muscles could indicate cataplexy, so make sure you bring this up when you see the doctor! Same with the difficulty in holding your head up – does that happen when you’re starting to feel really sleepy, when you’re feeling emotion, or both? (Happens to me in both cases.) When you do get a nap, is it refreshing at least for a couple hours? It’s really great that the Adderall is helping!

          Do keep me posted. I’m really interested to hear how it all turns out!

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