Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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deleted_user 02/16/2011

Cutting Edge: Ninety Naps a DayImagine needing more sleep - not hard for most of us.

But imagine if the need was so overwhelming you collapse wherever you are, whoever youre with and at any time.

Thats the terrifying reality for the one in two thousand people who are affected by narcolepsy - a neurological disorder which causes excessive daytime sleeping. Sufferers can fall asleep dozens of times a day, for a cumulative period of up to 18 hours.

There is no cure and few support networks.

Ninety Naps a Day, part of the Cutting Edge strand, follows three British narcolepsy sufferers: Samantha, 23, Ken, 59 and Tony, 14, as they attend a conference about the condition in New York.

And there stories really are touching.

Samantha tries to hide her condition from those around her but worries that shell never get a job. Kens marriage is under strain as his wife struggles to understand his problems. Tony is a bright boy but can only attend school with the aid of a classroom assistant and is wheelchair bound because his huge appetite for sleep means he can collapse at any moment.

They are all looking for answers, but will they find any in America?

We dont want to spoil it for you but lets say that this moving documentary will keep your eyes wide open right until the end.

this and others were aired overseas and with the copywrites we are unable to see it in the us----

deleted_user 02/16/2011

{:( can anyone find a way to see it here? ----

deleted_user 02/16/2011

maybe contact the producers and ask if they can send you a dvd?

deleted_user 02/16/2011

here is the producer's website:

http://www.dragonfly.tv/

hope that helps

deleted_user 02/17/2011

checked out the site -my comp had some problems loging on to its site-I'll check it out thus-hopeful my comp will be working

deleted_user 02/19/2011

I saw it at the NN conference. I believe you can friend Samantha on Facebook. I am always bothered however by. Descriptions of PWN like the one quoted...because many of us don't fall asleep in the obvious way all the time...but people and unfortunately docs assume that if someone has narcolepsy they will complain of falling asleep all the time..they consider that the hallmark/definitive symptom...I mentioned to a customer that I had narcolepsy and she looked horrified...she said, "but you are here alone all the time"! "those people need someone with them all the time"!...I know when I was first diagnosed I thought my doc was nuts because I didn't fall asleep all the time (frequent automatic behavior, and overwhelming sleep/ super fatigue attacks- yes, but no one tells the public about that) who would ever hire someone with narcolepsy if they believed that everyone one with narcolepsy met the criteria in the quote...how many undisguised people with narcolepsy would see themselves in that discription, let alone their doctors who could refer them for a sleep study? We have talked about n in the media lots of time before but not lately. the more fascinating symtpoms-dropping off into deep sleep spontaneously, hh, cataplexy, etc..they are all "entertaining" and of course many PWN deal with those symptoms...but so friggin' tired you can barely function, barely talk straight, have to psyche yourself up to walk across the room...not exciting, ... I remember when I saw the film...and I did like it overall, but when I saw that the PWN where in wheelchairs...well I looked around at all the PWN at the convention and not one was in a wheelchair...yes, some PWN do need a wheelchair at least sometimes, in order to get out and have a life...but it is not a common part of the PWN experience...if I had seen the film before I was diagnosed, I would have felt empathy for the PWN portrayed, but I would have thought I had anything in common with them...stepping down off my soap box again! : ) Hope you all have a good weekend.
Oo

deleted_user 02/20/2011

theres another bbc- called the sleeping child ---

deleted_user 02/21/2011

we had a bbc three documentary recently, 'the real sleeping beauty', about a girl with kleine-levin syndrome, is that the one you mean?

there's also an older bbc documentary from the horizon series, you can read the trancscript online here:
http://www.bbc.co.uk/science/horizon/2003/narcolepsytrans.shtml
there's also info and faq's but bear in mind it's a bit old now (2003)

hope that helps

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