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NN Blog

September 10, 2014 — Back to School

By Melissa Patterson
Outreach Coordinator

On a recent visit home, my mother was in a cleaning mood and she promptly put me to work sorting through some of the clutter she had unearthed in the back of my old closet. I’m not a messy person (clean clutter isn’t messy- it’s clutter I picked up, moved, vacuumed under and replaced. Totally different.), and I certainly don’t hoard things to the level that would get me on national television, but as my mother discovered, I do have a tendency to keep things that have no particular sentimental value, but that I feel vaguely bad about throwing away. Like old school work. I mean, I put all that effort into it, so it seems kind of wasteful to just throw it out, right? At any rate, this had clearly gotten out of hand at some point, because my mother had discovered years worth of old notebooks, binders and worksheets in the closet.

Mom wanted me to go through everything and put anything that I didn’t have some profound, emotional connection to (Read: all of it) in either the trash, recycling or Goodwill. I’d completely forgotten that any of it was there, so it was a bit of a shock to see how many years worth of old school stuff I was going to have to sort through.

As I sifted through old legal pads, composition books and half-used spiral notebooks, I did discover one or two things I wanted to keep and started to almost enjoy myself. It was a bit like going through a time capsule and re-discovering memories of things you’d half forgotten.

Notes 2

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Then I hit the notebooks from ninth grade.

Ninth grade was a miserable year for me for a number of reasons, the biggest of those being that I was diagnosed with narcolepsy that spring. I literally slept through huge chunks of my freshman year, and I owe a tremendous debt of gratitude to the exceptional teachers I had that year. They noticed my excessive daytime sleepiness and instead of shrugging it off as “typical teenager stuff,” they tried to help. They brought my EDS to the attention of my parents, other teachers and administrators, and even before I was diagnosed and received academic accommodations, they bent over backwards to help me. At the time, I really wasn’t in a mental or emotional place to appreciate how wonderful they were, but looking back on it now, I was truly blessed to have them on my side.

English essay annotated

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As I went through my old notes and assignments from back then, it brought back the memories of how badly I was struggling at that time in my life. On page after page of my old notes, I saw the signs of narcolepsy. Late assignments, a note about my repeated tardiness in my first period, doodles in the margins of handouts, and dozens of pages of notes where I obviously fell asleep or had a micro-sleep episode in the middle; notes where my brain went to sleep, but my hand kept moving.

In honor of the wonderful teachers I had that year, I thought it would be helpful to post a list of behaviors that could indicate that a child might have narcolepsy or some other sleep issue. Additionally, I’ve included photographs of some of my old papers and notes from my freshman year. Feel free to share them with teachers and other educators, use them to raise awareness, or to educate your own school system. The more exposure K-12 educators have to information about pediatric sleep disorders, the more likely it is that students with narcolepsy will get the help that they need instead of being labeled as “lazy” or inattentive.

In the classroom, a student with narcolepsy may exhibit some or all of the following behaviors:

1. Frequent tardiness in the morning - People with narcolepsy frequently find it challenging to wake up in the mornings and often have difficulty keeping track of time. This can cause students to miss the bus or otherwise be late getting to school.

2. Difficulty concentrating – Children who are sleep deprived often find it harder to stay focused and may have a shorter attention span. Students who do not get enough restorative sleep can also have difficulty remembering information. In particular, watch for children who seem to have difficulty concentrating during lengthy tests and non-interactive lessons.

3. Excessive daytime sleepiness – Students sleeping in class. Particularly watch out for children who fall asleep in the middle of an activity or while working on a worksheet, project, etc. Students with narcolepsy and other sleep disorders may be visibly drowsy and slow to respond when called upon. Sleep periods can last for seconds, minutes, or longer. If the student is roused immediately after falling asleep, he or she may seem very groggy and may have difficulty remaining alert.

4. Fidgeting and other distracting activities – Students with sleep problems may try to counteract their sleepiness with activities such as fidgeting, drawing, playing computer/phone/calculator games, moving around the classroom, etc.

5. Micro sleep episodes, automatic behavior – Children may continue a habitual behavior, such as writing, or appear to be “daydreaming,” or “zoning out.” Automatic behavior may make the student look like he or she is working, but they are not fully alert. Likewise, a student who appears to be daydreaming may be “sleeping with their eyes open.”

6. Cataplexy (sudden loss of muscle tone) – This is particularly likely to occur when the student is laughing, feeling stressed, or experiencing other strong emotions. Children may complain about weak knees,  almost falling, or exhibit frequent unconscious facial tics or movements. Making faces, unusual tongue movements in the cheeks, the head falling forward suddenly, and unusual clumsiness are all common indicators of cataplexy in children and adolescents.

7. Sudden unexplained weight gain – Children with narcolepsy can spend a great deal of time sleeping or otherwise inactive. This, along with changes in metabolism, can lead to unexpected weight gain.

For more information about narcolepsy and learning, visit our For Students resource page.

© 2014, Narcolepsy Network®

 

June 24, 2014: Dear Honda: Narcolepsy Isn’t Funny

By Melissa Patterson
Narcolepsy Network Outreach Coordinator

To those of us with narcolepsy, it pretty much goes without saying that any joke that relies on stereotypical portrayals of narcolepsy to try and get a laugh is not just a humor failure, but also potentially hurtful. Just as obviously, using a joke about any serious medical condition to sell a car is a really bad idea, as Honda hopefully learned this past weekend.

On Saturday night, Dr. Mark Patterson, and three other Narcolepsy Network board members learned about a major comedic failing in a newly released ad for the 2015 Honda Fit. A press release issued by Honda stated that the ad was supposed to be humorous and appeal to GenY buyers. The premise of the ad was that the Honda Fit is a great fit for everyone — unless you have narcolepsy, apparently.

About 10 seconds into the commercial, after establishing that the car could hold the contents of your dorm room and or your synthesizer, the ad randomly shows a young man who starts to explain that he has a medical condition called narcole… and then he starts snoring halfway through the word. The narrator’s response? “You shouldn’t be driving.”

Unfortunately, many PWNs face comments like this in real life, so in addition to inaccurately portraying a serious medical condition, the ad also reinforced misconceptions about narcolepsy just for the sake of a cheap laugh.

Obviously (to every one but Honda), this was totally unacceptable.

Thanks to the quick actions of Mark Patterson, and the board members and staff of Narcolepsy Network, we were able to spread the news quickly to the narcolepsy community and most importunity, contact the appropriate people at Honda. The narcolepsy community response was huge.  Honda’s Facebook and Twitter pages and the comments section of the commercial’s YouTube page quickly filled up with messages from outraged PWNs. Thank you to everyone who spoke up.

Immediately after receiving the tip-off about the ad, Dr. Patterson sprang into action on Facebook, Twitter and email, and called and left a message for Robyn Eagles, the Manager of Honda U.S. Public Relations. He expressed Narcolepsy Network’s displeasure with the company’s use of narcolepsy as a (failed) joke, and asked that the ad be modified or removed.

I opened the email from Mark early Sunday morning, and like everyone else, I got irritated and then I got busy. After contacting the rest of the NN staff just to make sure we were all over this (we were!), I joined other PWNs, supporters and advocates in spreading the word through social media and encouraging others to take action.

Since the video had not been removed on Sunday morning, Mark left another message for Robyn Eagles, and that afternoon our Executive Director, Eveline Honig and Communications Coordinator, Karen Rorie, worked on an official letter to Honda executives. Throughout the weekend, the entire narcolepsy community kept up the pressure on Honda through social media. Dr. Patterson also left Robyn a third message on Sunday night telling her that she was going to have a PR nightmare on her hands if the video remained unchanged.

Finally, early on Monday morning, someone from Honda must have checked the YouTube comments, Twitter feed, Facebook page, email messages and voice-mail, because the offending video was moved to “Private” on YouTube. Shortly thereafter, Robyn called Mark to apologize and let him know that internal matters had been dealt with, and the ad ‘would never see the light of day’.  See Honda’s apology

In just 36 hours, working through both social media and official channels, we were able to convince Honda to modify their ad, do some education, and demonstrate that the narcolepsy community can pull together quickly when needed. Now that’s what I call success!

Update, June 25: Although Honda did instruct TV networks and dealerships to pull the ad, some on them did not receive the message before the ad was aired or posted.  We continue to work with Honda representatives to make sure the ad is pulled from all media outlets.

© 2014, Narcolepsy Network®