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Narcolepsy Documentary


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#1 Sam.Toombs

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Posted 27 September 2008 - 03:09 AM

OK for an english Narcolepstics out there the documentary is to be aired on the 7th or 8th of october around that time - for anyone not in england that wants to watch it you should be able to find it on Channel 4's website

again for english Narcoleptics, there are some magazines that have interviewed me (god that got boring) so:


Magazine articles:
The Mirror: - i have no idea when this is to be published so i cant help you out there but it went well so if anyone sees this i hope it is a good article.
Womans Own: their new issue that is out on the 7th (i dont know if an issue comes out before that, but the one after the 7th of october has an interview with me and i had it read back to me and it sounds fine to me - a few errors but they are personal as far as i can remember and nothing about narcolepsy so i did not bother correcting them. It was read back to me over the phone so i had difficulty knowing exactly what was being said at the time but i think that one will be fine

i also had an itnerview with Closer but they decided not to run the article which is fine by me as i feel that they were not going to portray it right - they kept asking questions that i feel were there merely to 'sex' it up - have you ever fell asleep in your meal/during sex? i just didnt like where they were going with it so it was a relief for me when they didnt go ahead with it.

Also i know that on other boards there are people who have looked up this documentary and found it described as funny in parts so they are getting a bit annoyed ...

as far as the funny parts go in the film - i have been thinking about this and from what i have read above it would not suprise me if this is about the way English and Americans are very different social creatures - so for me personal space is a big thing but the americans seemed to like hugs, there was a time towards the end of my stay there where we were all asked to give everyone hugs and the camera man was sat next to me and i just looked at him and gave him this look as if to say 'there will be trouble if someone tries to hug me' - the director said he found that bit funny so i don't know if it is that they are referrring to as again i have not seen the final edit

Sam

#2 Marcianna

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Posted 28 September 2008 - 09:25 AM

Oh that is so funny about the hugs. I didn't know that. I'm not a hugging type person either, but being in America I have to say alot of people are. You see it all the time.
But I will admit that when I was younger, I freaking hugged everybody. Maybe it just wore off as I got older.Now it makes me suspicious.... like everyone is secretly trying to feel me up. sad.gif Creepy!! Get off me!! EW!! LOL.

#3 Mike M

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Posted 28 September 2008 - 02:13 PM

I love the hugging comments too. As a U.S. citizen, I will also plead guilty as charged. I tend to hug a lot, but it is always meant in a friendly way. Goog to know NOT to try it with Marcianna, though. I would not want to be off putting. I will also be sensitive to the reality that it is a U.S. thing and not try to hug any Brits who might be in Milwaukee next week.

#4 Marcianna

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Posted 28 September 2008 - 07:03 PM

QUOTE (Mike M @ Sep 28 2008, 08:13 PM) <{POST_SNAPBACK}>
I love the hugging comments too. As a U.S. citizen, I will also plead guilty as charged. I tend to hug a lot, but it is always meant in a friendly way. Goog to know NOT to try it with Marcianna, though. I would not want to be off putting. I will also be sensitive to the reality that it is a U.S. thing and not try to hug any Brits who might be in Milwaukee next week.



lol... I wasn't being that serious was I?
Don't worry I wont Taser anyone who tries to hug me!
Besides I cant bring that thing on the plane. They frown on that.

#5 Mike M

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Posted 28 September 2008 - 10:24 PM

QUOTE (Marcianna @ Sep 28 2008, 07:03 PM) <{POST_SNAPBACK}>
lol... I wasn't being that serious was I?


Gosh, no. At the same time, I do think it is good to know that some people do not like "hugging," which can be fairly ubiquitous in the U.S.

#6 Kimberly

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Posted 30 September 2008 - 08:46 AM

QUOTE (Sam.Toombs @ Sep 27 2008, 03:09 AM) <{POST_SNAPBACK}>
as far as the funny parts go in the film - i have been thinking about this and from what i have read above it would not suprise me if this is about the way English and Americans are very different social creatures - so for me personal space is a big thing but the americans seemed to like hugs, there was a time towards the end of my stay there where we were all asked to give everyone hugs and the camera man was sat next to me and i just looked at him and gave him this look as if to say 'there will be trouble if someone tries to hug me' - the director said he found that bit funny so i don't know if it is that they are referrring to as again i have not seen the final edit


Sam,

Thank you for telling us about the documentary. I wonder if it will be on BBCA (BBC America, which is a channel that I get on my cable system here in the states)? I'll look for it.

Anyway, it's so funny that you mention some of the social differences between English and Americans. In the late 90's I traveled to the U.K. quite often for my job -- we had business in the black country, in Leicestershire (for you Americans, this area is known for its coal and industrial businesses like Pittsburgh "steel town" or Detroit "motor city.") Before our first trip, we did no planning whatsoever for any cultural differences between us and our British colleagues, because we figured since we all spoke English we'd get along fine! We experienced similar things (hugging and personal space, for example) and after a time, we all had a good laugh about it. It's a good reminder for all of us to ASK first if we feel compelled to share an embrace with someone we only just met!

#7 Sam.Toombs

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Posted 01 October 2008 - 05:57 AM

<h3 class="summary">OK, this is how the Radio Times has described it plus it has the correct time etc. It might not be on BBC america because it is a channel 4 documentary series which is not owned by the BBC but it should be on the channel 4 website - as soon as i know where i will post a link
</h3><h3 class="summary">
</h3><h3 class="summary">Ninety Naps a Day</h3> Thursday 09 October
9:00pm - 10:00pm
Channel 4

"Documentary. Three British narcolepsy sufferers - who can fall asleep dozens of times each day - head to a conference in the US, where they attend a series of pioneering workshops. Samantha is embarrassed of her constant collapsing, and initially struggles to embrace the openness of the conference. Tony struggles to stay awake at school and is determined to learn more about alternative treatments. Ken's relationship has been put to the test because of his narcolepsy."



#8 sleepylisa

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Posted 01 October 2008 - 08:53 AM

My husband is Hawaiian and we have moved back and forth several times from Hawaii to Ohio. In Hawaiian culture not only do you hug when introduced to someone, but you always give a kiss on the cheek. This was weird for me at first but I had to do it so I didn't offend/insult anyone. It eventually became natural and I actually enjoyed it (though spent a lot of money on "Covergirl Longwear" lipstick).

The problem was, when I moved back to Ohio I was still kissing everyone. I was even at a job interview once and when introduced to my prospective employer almost kissed her. More than a little awkward. I've had to explain myself on more than one occasion.

I also have to explain to all my girlfriends after introducing them to my husband that he's not trying to "get fresh" with them. He's innocently pissed off a few husbands along the way. But it's funny now...my girlfriends actually now kiss him on the cheek out of respect for his culture.

Good thing we aren't going to the conference...he might have forgot we weren't in Hawaii and kissed Sam on the cheek and got his butt kicked!! LOL tongue.gif

#9 too exhausted

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Posted 10 October 2008 - 04:00 AM

Here is the link to the 'Cutting Edge' doc shown last night featuring Sam and two other people who visited the NN conference in April.
http://www.channel4....=watchpage_box1
Sam is also featured in 'Womans Own' magazine, dated 13th October on page 48. Happy watching and reading.

#10 sleepy.erin

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Posted 10 October 2008 - 12:25 PM

Unfortunately, you have to be in the UK or Ireland in order to view these. I tried to find ways around it by surfing around the site but they have licensing restrictions that prohibit them from playing the videos outside of the UK and Eire. Boo! sad.gif


QUOTE (too exhausted @ Oct 10 2008, 04:00 AM) <{POST_SNAPBACK}>
Here is the link to the 'Cutting Edge' doc shown last night featuring Sam and two other people who visited the NN conference in April.
http://www.channel4....=watchpage_box1
Sam is also featured in 'Womans Own' magazine, dated 13th October on page 48. Happy watching and reading.



#11 m00se

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Posted 11 October 2008 - 10:42 AM

My husband and I watched the documentary - we we're not amused. What did others feel about it?

The programme could have put forward the disorder better:

- It was all very impersonal filming.
- Nothing was really explained about Narcolepsy or
- Why these people fell asleep because there is medication out there and yes, we know it doesn't work for all.
- Any insight as to why the Narcolepsy Network meet-up uses different types of seminars/events and how they can help.
- Too many people sleeping shots.
- I felt that if people didn't know what this was and then they meet someone either at work or socialising that they would have the impression of us just being wierd, useless, sleepy wacko.gif -ups.

What it did show is that if you are chosen by a TV documentary company, you too could go on an all expenses paid trip somewhere!

#12 too exhausted

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Posted 11 October 2008 - 11:59 AM

QUOTE (m00se @ Oct 11 2008, 04:42 PM) <{POST_SNAPBACK}>
My husband and I watched the documentary - we we're not amused. What did others feel about it?

The programme could have put forward the disorder better:

- It was all very impersonal filming.
- Nothing was really explained about Narcolepsy or
- Why these people fell asleep because there is medication out there and yes, we know it doesn't work for all.
- Any insight as to why the Narcolepsy Network meet-up uses different types of seminars/events and how they can help.
- Too many people sleeping shots.
- I felt that if people didn't know what this was and then they meet someone either at work or socialising that they would have the impression of us just being wierd, useless, sleepy wacko.gif -ups.

What it did show is that if you are chosen by a TV documentary company, you too could go on an all expenses paid trip somewhere!


I have watched this twice as the first time I was tired and kept missing parts by thinking Oh, thats me. Everyone will take from this doc what they want.
I took from it,
N can cause you to sleep upto 20 hours a day. I sleep 16 hours a day on meds.
N is a neurological disorder and is not made up, or funny and not even understood by your nearest and dearest (even after 40 years of marriage).
It is hard to get the meds that don't have side effects that are worse than the condition it is trying to help. For example provigil/modafinil like Tony took gave him bad side effects, it did me too. It left me suicidal and if I hadn't had a supporting partner and being a mother then I might have been tired. I have never been depressed in my life before these tablets.
It is hard getting xyrem and most PWN aren't even told about it because of the expense. PWN living in Scotland aren't even given the chance to be prescribed it.
Showing how stress effects your concentration, words, need to sleep and C was good.
Saying that C can be caused by stress, shock and not only laughter was good aswel.
Showing how the conference was geared up for sleeping with a room full of beds and the hotel rooms provided where well planned for PWN.
Nightmares and disturbed sleep were mentioned as was the harshness of holding down a job.
Friends, family are mentioned as not believing the persons symptoms and not staying in their lives.
The lack of support in the UK was mentioned.
Yes a lot more could have been said about hypocretins, sleep cycles (well no sleep cycles), exhaustion, sleep clinics, medications etc. But the programme was about following three people to the NN conference which is what they did.
Living with N you will have a better understanding but at least N has been shown to over 2 million veiwers. More people awareness is what is needed. We all have coping mechanisms and being in the UK we don't tend to talk about our N. This needs to change and Sam in the TV doc did mention this. They all got something out of meeting other PWN which is a lesson.
If you knew nothing about N then you would know a little of how it effects school life, work, relationships and peoples perceptions of being thought of that we fake a serious disorder.


#13 Catkin

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Posted 11 October 2008 - 05:14 PM

QUOTE (too exhausted @ Oct 11 2008, 05:59 PM) <{POST_SNAPBACK}>
I have watched this twice as the first time I was tired and kept missing parts by thinking Oh, thats me. Everyone will take from this doc what they want.
I took from it,
N can cause you to sleep upto 20 hours a day. I sleep 16 hours a day on meds.
N is a neurological disorder and is not made up, or funny and not even understood by your nearest and dearest (even after 40 years of marriage).
It is hard to get the meds that don't have side effects that are worse than the condition it is trying to help. For example provigil/modafinil like Tony took gave him bad side effects, it did me too. It left me suicidal and if I hadn't had a supporting partner and being a mother then I might have been tired. I have never been depressed in my life before these tablets.
It is hard getting xyrem and most PWN aren't even told about it because of the expense. PWN living in Scotland aren't even given the chance to be prescribed it.
Showing how stress effects your concentration, words, need to sleep and C was good.
Saying that C can be caused by stress, shock and not only laughter was good aswel.
Showing how the conference was geared up for sleeping with a room full of beds and the hotel rooms provided where well planned for PWN.
Nightmares and disturbed sleep were mentioned as was the harshness of holding down a job.
Friends, family are mentioned as not believing the persons symptoms and not staying in their lives.
The lack of support in the UK was mentioned.
Yes a lot more could have been said about hypocretins, sleep cycles (well no sleep cycles), exhaustion, sleep clinics, medications etc. But the programme was about following three people to the NN conference which is what they did.
Living with N you will have a better understanding but at least N has been shown to over 2 million veiwers. More people awareness is what is needed. We all have coping mechanisms and being in the UK we don't tend to talk about our N. This needs to change and Sam in the TV doc did mention this. They all got something out of meeting other PWN which is a lesson.
If you knew nothing about N then you would know a little of how it effects school life, work, relationships and peoples perceptions of being thought of that we fake a serious disorder.


I was disappointed with the documentary. In as far as it went, it was fine. But not everyone with narcolepsy has such severe symptoms as those who took part, but can suffer just as much. I am tired all the time. I don't know what it is to wake up in the morning and feel energetic. I dimly remember feeling alive in my childhood, but I have struggled to keep awake since my mid teens. For the most part, I can manage not to fall asleep in public, but it takes immense resources of energy. When at home, I sleep when I need to, which is often. Likewise, my cataplexy is not as bad. I have had full sudden collapses, but they are rare (only about six in the last five years. For the most part I get minor cataplexy (very frequent) usually a slack jaw and slurred speech, occasionally a loss of control in a wrist, or, very often, and worrying if out and about, a feeling of total weakness in my legs and a desperate need to sit before falling. I usually control this, if I can't sit, by focusing like mad on something or somebody.
My life has been ruled by narcolepsy, though I didn't know it. I am one of those who was not diagnosed until about 2 years ago (I'm in my mid fifties now)and even now, there seems to be some reluctance to say it is narcolepsy, despite test results and the sleep centre inviting me to take part in research! When your sleep'specialist ' asks you what there is out there to treat narcolepsy, it doesn't give you much confidence. Provigil didn't work for me, and in Scotland they won't prescribe anything else.
So, having had to give up my job, loose my house and life style because of narcolepsy, and having no support (my partner bless him, thinks it's all in my head), I felt that the programme missed out explaining that this condition affects people in different ways. The only reason I can cope, and I suspect, many like me, is because I've had a life-time of trial and error, and just having to get on with it.
Come on programme makers, give us a documemtary that tells the whole story.
Having said all that, I commend Sam, Tony and Ken for their bravery in taking on the challenge. I'm glad they got something out of the trip and I hope they now find comfort in knowing that there are others who do understand smile.gif

#14 m00se

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Posted 12 October 2008 - 06:10 AM

QUOTE (too exhausted @ Oct 11 2008, 04:59 PM) <{POST_SNAPBACK}>
If you knew nothing about N then you would know a little of how it effects school life, work, relationships and peoples perceptions of being thought of that we fake a serious disorder.


Exactly. You have to watch these things with a pinch of salt... We've got the disorder and so can pick up on the bits inbetween. But from a laypersons view, they'd have come away none the wiser and possibly somewhat confused.

It's not that I am against the art of documentary making, but you should watch much older Dispatches, Cutting Edge, Horizon, et al to see that these shows are dumbed down a hell of a lot more than they used to be. Publicity of the disorder is a good thing too, but only in the right places. I feel GPs and other healthcare professionals should be trained in this and be able to recognise signs and symptoms. These sorts of people can be just as clueless as the next.

#15 bagpuss

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Posted 18 October 2008 - 08:38 AM

GOOD OR BAD I AM JUST PLEASED THAT MORE BRITS NOW HAVE HEARD THE WORD NARCOLEPSEY.... AND HERES TO LOOKING FORWARD TO MORE PEOPLE UNDERSTANDING US.LOL .