37 replies to this topic

[Cryopathic]

Hey all, Is anyone Interested in making a support group in the uk?

[Cryopathic]

Or Maybe even a Help Forum?

[greatbig47]

Hi,

I think my husband may be interested, we live in Cumbria

Not to stray off topic....
It has been brilliantly suggested (by Sam) that an online version specifically for my brothers and sisters in the UK be added .
If I do that, I'll want to do it right. Which would mean some time. If I get asked about the forum 2.0...it will have a geo-specific options.

If I get a chance, I'll start a post asking what people think. I liked the idea, i just want some input on how and why it should happen.

-Stu

[Toph4er]

What about live chats scheduled by where you live? I know there is another message board which has weekly chats, though I have never participated

[Sam.Toombs]

definately interested - of course i live in Sheffield ... lovely lovely sheffield.

[excuses]

Hi U.K. members,
Several posts have indicated that online support is not available for Narcoleptics in the U.K. I discovered this website awhile back when I was looking for more information on this disorder. The information was very helpful and have used it several times to educate others. They do provide contact information that might be helpful in finding the support you are looking for in the U.K.

http://www.narcoleps...employment.html

[too exhausted]

Hi,

I am living in the Uk and until I saw a tv programme on Narcolepsy I had never heard of it. I have had N for 29 years and only being diagnosed for five of these. I had developed coping mechanisms and with my dad always falling asleep as soon as he sat down (probably due to working long mixed shifts) I didn't think nothing of it. My mum was ill with MS and my nanna, I thought was old also both slept a lot. It was only my daughter getting older and starting living with someone that I realised that sleeping at least 14 hours a day was not the norm. I thought eveyone had vivid nightmares/dreams and automatic behaviour. When I tell people that I have N and had to give my job up and have no social life, the people that have heard of it think you just fall asleep in your meals. I think a support group would be good as even friends and family (apart from the ones that I live with) still think that I am lazy and a woman of liesure. This really gets to me even though I know they are ignorant, but they shouldn't be as I have explained the condition to them in simple terms.

[bagpuss]

HI . TOO EXHAUSTED .I ARGREE WITH WHAT YOU ARE SAYING ,BUT IT TAKES TIME.EVERYONE IS DIFFERENT.I HAVE FRIENDS AND CLOSE FAMILY THAT HAVNT GOT A CLUE NO MATTER HOW MANY TIMES I TALK TO THEM.IVE GOT 2 SONS ,ONE WHO WONT TALK ABOUT IT AND HATES IT EVEN IF I BRING THE N WORD UP.BUT THEN IM BLESSED WITH MY YOUNGER SON,WHO KNOWS ME AND MY NARCOLEPSEY INSIDE OUT AND MAKES SURE THAT SO DOES EVERYONE ELSE.I FELL ASLEEP AT HIS RUGBY MATCH LAST MONTH,ONE OF HIS TEAM MATES LAUGHED AND SAID DID I FIND IT THAT BORING !!!!!! AFTER MATCH TEAM TALK WASNT ABOUT THE GAME,IT WAS ABOUT NARCOLEPSY.LOL.ITS GREAT,THEY NOW ASK SO MANY QU,S .ALSO SOME OF THERE PARENTS ARE SLOWLY COMING UP ASWELL. ITS JUST GOING TO TAKE TIME.

[Damian]

[yeah come on lets get one going for the UK., UKAN ain't doing anything, and if it stays that way then I would be willing to make the site. As for the brits invading well its take over time go UK.

[bagpuss]

GO FOR IT MATE. WITHOUT THIS SITE AND STU I DONT THINK THAT I WOULD OF BEEN HERE TODAY.(THANKS STU )FELLOW BRITS MITE NOT BE SO LUCKY TO COME ACROSS THIS SITE. ALTHO I TELL EVERYONE I MEET .DOCTORS ALWAYS GIVE YOU UKAN........KEEP ME POSTED

[Damian]

wouldn't mean to disrespect stu, maybe we can stop "invading" them. I to am very grateful for the information and replies that everyone has done, Need a Name for site?

[bagpuss]

DAMAIN IVE TRIED TO SEND YOU MESSAGES, DONT KNOW WHAT IM DOING WRONG BUT IT WONT LET ME. I WILL KEEP TRYING.HOPE TO CHAT SOON .

[Damian]

don't think my settings were right try it again if not then email me ar damianbill@btinternet.com okay,

[greatbig47]

wouldn't mean to disrespect stu, maybe we can stop "invading" them. I to am very grateful for the information and replies that everyone has done, Need a Name for site?

None taken!

If a UK site is what you guys are lookin' to do, please feel free to use me as a resource...for hosting...or...whatever!
I like to think of this forum as the GLOBAL place...
So please...INVADE AWAY!

I'm still trying to get this place to where I want it, and I like the non-American influence...

[petra]

Hi,
I was reading the UKAN board but can't work out how to post there - not sure if the problem's with the new site or my head - If yous were meeting in the north of England, I'd like to come too!

[bagpuss]

UKAN.......I THINK AGAIN THAT THEY ARE HAVING PROBLEMS. DONT KNOW AS I DONT USE THEM,BUT IVE JUST HAD A LOOK TO SEE IF I COULD HELP YOU. JUST AN IDEA GUYS . BUT AS YOU KNOW BIG GET TOGETHER IN THE STATES IN OCTOBER .IM SAVING HARD AS THIS TIME IM NOT MISSING OUT..........(LONG STORY) BUT WHY DONT WE TRY AND SORT OUT A GET TOGETHER AROUND THE SAME TIME,INFORMLY LIKE AND SEE WHERE IT TAKES US AND WHAT WE WANT TO DO.(DAMAIN THIS COULD BE YOUR 1ST WEEKEND AWAY) LET ME KNOW WHAT YOU THINK XX

[Damian]

UKAN.......I THINK AGAIN THAT THEY ARE HAVING PROBLEMS. DONT KNOW AS I DONT USE THEM,BUT IVE JUST HAD A LOOK TO SEE IF I COULD HELP YOU. JUST AN IDEA GUYS . BUT AS YOU KNOW BIG GET TOGETHER IN THE STATES IN OCTOBER .IM SAVING HARD AS THIS TIME IM NOT MISSING OUT..........(LONG STORY) BUT WHY DONT WE TRY AND SORT OUT A GET TOGETHER AROUND THE SAME TIME,INFORMLY LIKE AND SEE WHERE IT TAKES US AND WHAT WE WANT TO DO.(DAMAIN THIS COULD BE YOUR 1ST WEEKEND AWAY) LET ME KNOW WHAT YOU THINK XX

Totally agree I cannot make the meeting in the states. but are willing to be part of an informal get together to see how it works we need to agree on location, date etc......

[bagpuss]

THE MIDLANDS IS A GOOD PLACE,AS ITS IN THE MIDDLE .LOL . NOTHING TO DO WITH ITS EASY FOR ME. ALSO MY EX SAYS WE CAN HAVE IT AT HIS HOUSE .BIG GARDEN SO PEOPLE COULD ALWAYS BRING TENTS IF THEY WANTED TO.ITS NOT MUCH BUT ITS A START AS FOR THE DATE HAVNT A CLUE.