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In need of personal testimonies for Grad Project


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#1 nyemvula

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Posted 10 April 2008 - 01:58 PM

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!

#2 avbrown

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Posted 11 April 2008 - 01:27 PM

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.

#3 Toph4er

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Posted 12 April 2008 - 02:23 PM

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".

#4 sleepyavon

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Posted 15 April 2008 - 12:28 AM

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

#5 Jin-Ah

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Posted 28 April 2008 - 10:51 PM

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’t control, no matter how urgent the situation. I would suddenly fall asleep for periods lasting from seconds to minutes. It first began minimally, in front of the TV, or while reading books, but the problem grew as narcolepsy began to invade and dictate my school life as well. I began falling asleep at inappropriate times in class, while reading books, while engaging in conversation with friends. I became a social pariah. I began failing at school. My confidence was gone.
As I began to avoid contact with people altogether, it was a matter of time before I fell into a black hole of depression. I was alone, and my parents disregarded my depression and narcoleptic symptoms to lack of sleep and discipline. But the problem became eminent the day when I fell asleep running a mile in gym. At the end of November, 2007, I was finally diagnosed by Dr. William Lucht at the Lung & Sleep Clinic of Alaska Inc. as narcoleptic.
As I learned narcolepsy was the responsible chronic disease causing my excessive daytime sleepiness (EDS), loss of muscle tone (cataplexy), and was limiting my school, social, and physical ability, I began to feel all hope for the future was gone. I was crushed. I could not control my ability to focus, remember, study, and stay awake. Living life not knowing whether I will be awake for the next moment was a terrifying and terrible feeling. I would never be able to drive a car for my safety and everyone else’s. Will I be awake in the middle of my exams? Will I fall asleep at my wedding?
I had been living like this since my early teens, but I was not diagnosed till years later. In those years between my first attack of narcolepsy and my diagnosis, I had been suffering alone. For years I went unmedicated, and I felt helpless as I transformed from a ‘high achiever’ to a ‘slacker.’ But luckily, since my diagnosis, I have been working with Dr. Lucht to manage my symptoms and emotional problems.
Narcolepsy is a chronic condition that will never go away, but the medication has been helping my ability to focus, remember, study, and stay awake. After my therapy began, I began to feel more control in my unpredictable life. After time, with medication, I no longer fell asleep during the day, and I began to become curious about life—about the minutes I could now spend to explore. Dr. Lucht suggested I try something new to practice focusing for periods of time, and that was when I picked up my first camera. It was love at first flash. For all those moments I felt were beautiful, for all those moments I felt might not be here tomorrow, for all those moments I wanted to preserve, there was my camera, and with a click, I could save anything. It was a concept I fell in love with. It was a concept that helped raise me out of my depression. Photography changed my life, and I owe my life to it.
By keeping busy, maintaining steady medication, and accepting my new lifestyle, there have been great improvements in my mental and physical conditions. In contrast to a feeling in the past, I have confidence in the future. There are many moments to have, to create, to capture. I used to feel the world was going to pass me by in the moments a black curtain took over my world, but now, with my camera in hand, I feel I can keep up with the world. I feel there is a place for me and my camera. My narcolepsy has given me the ability to identify with hardships, but above all, my narcolepsy has given me the ability to see a story and meaning in every moment. That, I believe, has helped with my artistic vision and photography. That is what I want to further develop and share with others.

#6 MOE2626

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Posted 29 April 2008 - 04:38 PM

QUOTE (nyemvula @ Apr 10 2008, 06:58 PM) <{POST_SNAPBACK}>
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:)

#7 Stobugs

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Posted 07 May 2008 - 10:46 PM

QUOTE (nyemvula @ Apr 10 2008, 02:58 PM) <{POST_SNAPBACK}>
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.

#8 Toph4er

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Posted 08 May 2008 - 08:05 PM

QUOTE (Stobugs @ May 7 2008, 08:46 PM) <{POST_SNAPBACK}>
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 biggrin.gif.

Chris"Toph4er"

#9 Chuck Z.

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Posted 08 May 2008 - 08:18 PM

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.gif 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" dry.gif But, I digress!