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nyemvula

In need of personal testimonies for Grad Project

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Hi there!

I'm a senior in High School, and am trying to do a video on Narcolepsy for my grad project. In order to make this as accurate and interesting as possible, I would greatly appreciate any personal testimonies anyone is willing to give me, especially on things dealing with cataplexy, because that is the one symptoms that I really don't ever deal with, and when I do it is VERY slight. Also if anyone has video documentation that they would be willing to share I could get you an address (most like the school's) for you to send it to. I am in the thespian program at my school, and know VERY talented actors and actresses (and I mean VERY GOOD. Some have been offered Broadway auditions. No joke!) I will double check my scenes with anyone who contributes, to make sure they are as accurate as possible. Please, if anyone has any stories of dealing with N, I would love to have them!! Just reply to this post via PM or post. Whichever you prefer. thank you so much!

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Have you watched the videos on narcoleptic (cataplectic) goats? You can search for "fainting goats" on YouTube and see the videos.

I'm not sure how applicable this might be for you, but this might strike a chord more with the younger high school crowd.

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I'm not sure about that, they may think of it more as a joke, and get less understanding out of it. Personal stories really are the best way to go. Fortunately for me, my attacks are quite mild, though frequent. I don't recall having ever dropped to the floor...maybe knees buckling but it's mostly neck falling, slurring, etc. that most people wouldn't notice unless they knew what to look for. Inconvenient yes, but not exactly "dramatic".

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Look under cataplexy times for my Pomegranite story. It is really a classic amongst my family and friends. I would be glad to help, Rachel

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I have my personal statement I sent for college applications dealing with my struggles with Narcolepsy, maybe it'll help:

Sleep was always a feeling tugging away at my consciousness. It was something I couldn

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Hi there!

I'm a senior in High School, and am trying to do a video on Narcolepsy for my grad project. In order to make this as accurate and interesting as possible, I would greatly appreciate any personal testimonies anyone is willing to give me, especially on things dealing with cataplexy, because that is the one symptoms that I really don't ever deal with, and when I do it is VERY slight. Also if anyone has video documentation that they would be willing to share I could get you an address (most like the school's) for you to send it to. I am in the thespian program at my school, and know VERY talented actors and actresses (and I mean VERY GOOD. Some have been offered Broadway auditions. No joke!) I will double check my scenes with anyone who contributes, to make sure they are as accurate as possible. Please, if anyone has any stories of dealing with N, I would love to have them!! Just reply to this post via PM or post. Whichever you prefer. thank you so much!

HELLO,

I APPLAUD YOUR EFFORTS!!! THIS IS A DISEASE THAT ALL MUST LEARN ABOUT. I AM A 47 YR OLD MOM. I HAD A TERRIBLE BOUT OF MONO IN MY JUNIOR YR OF HS. ( SO BAD, THAT MY DAD HAD TO CARRY ME TO THE BATHROOM!) I WAS IN BED FROM OCT - APRIL! tO DESCRIBE HOW I FELT...WORSE THAN EXHAUSTION!

SINCE THEN I WAS ALWAYS TIRED. IT TOOK ME 26 YEARS TO BE DIAGNOSED. I HAVE HEARD FROM MANY DIFFERENT TYPES OF DOCS. EVERY EXCUSE FROM: YOU WORK TOO HARD, YOUR DEPRESSED, YOU HAVE TO SLOW DOWN, NOTHING IS WRONG, THE LSIT GOES ON!

I NEED TO WORK 2 JOBS NOW, SINCE HUBBY HAS BEEN DISABLED. SO I BEYOND TIRED! i REST FREQUENTLY AND GO TO BED EARLIER THAN OUR KIDS...MANY A NIGHT BY 7pm!

DURING PREGNANCY WAS VERY ROUGH! EVERYONE IS VERY TIRED, BUT I WAS SHEER EXHAUSTED! WHILE CARRYING MY 2ND, I SPENT MANY TIMES CRYING, JUST FROM SHEER EXHAUSTION! I WOULD GO TO BED BETWEEN 6-7pM AND NOT WAKE TIL 7-8 AM..THEN TAKE A 2-3 HOUR NAP IN THE AFTERNOON. VERY DEPRESSING AS ALL I DID WAS SLEEP! SOME FAMILY MEMBERS AND FRIENDS JSUT DO NOT UNDERSTAND! EVEN KNOW, WITH A DIAGNOSIS, THEY THINK IF I DIDN'T SLEEP SO OFTEN, I WOULD BE MROE AWAKE. NOT!!!

MY STORY COULD GO ON & ON..LET ME KNOW IF THIS HAS HELPED ANY OR IF U WANT TO TALK FURTHER.

MAUREEN FROM MASS:)

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Hi there!

I'm a senior in High School, and am trying to do a video on Narcolepsy for my grad project. In order to make this as accurate and interesting as possible, I would greatly appreciate any personal testimonies anyone is willing to give me, especially on things dealing with cataplexy, because that is the one symptoms that I really don't ever deal with, and when I do it is VERY slight. Also if anyone has video documentation that they would be willing to share I could get you an address (most like the school's) for you to send it to. I am in the thespian program at my school, and know VERY talented actors and actresses (and I mean VERY GOOD. Some have been offered Broadway auditions. No joke!) I will double check my scenes with anyone who contributes, to make sure they are as accurate as possible. Please, if anyone has any stories of dealing with N, I would love to have them!! Just reply to this post via PM or post. Whichever you prefer. thank you so much!

the best one i like to tell is the big fish. i love to fish and i never could set the hook. why because my arms dropped every time. i was diagnosed after i fell in a river setting a hook. always lost the big one. not so much now with meds.

another quick skit is me finding a fifty dollar bill in a parking lot. boom!!!! head-first right on it. friends wondering the whole time, what is wrong with that idot.

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another quick skit is me finding a fifty dollar bill in a parking lot. boom!!!! head-first right on it. friends wondering the whole time, what is wrong with that idiot.

LMAO that almost made me laugh out loud (very dangerous if I actually do! I hate having to suppress it T_T) Great story :D.

Chris"Toph4er"

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Very similar to one of my passions: golf.

If I'm tired or just basically peeved from a bad round, I have a horrible time with the swing. Hard to explain, but I do a backswing fine, then my brain says "Go!" (er, piff! actually LOL) and by the time I swing down to the ball, my arms are floppy and my hands let go -- the club goes straight into the ground and the ball goes about 2 ft forward! :blink: Oh, the humanity!

It's hard to "explain away" to playing partners! I'm a good golfer (I've been as low as a 2 handicap). I can play to par for 14 holes, hit the wall, then start doing what I just described and everybody starts calling me a "sandbagger" <_< But, I digress!

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