NSF's Online Community, Pillow Talk™

I am a 23yr old female and I have narcolepsy. I would like to know if there is anyone that is close to my age that has narcolepsy and how they deal with it personally, emotionally, and with faimily and friends. I live in Tennessee and there are no support groups in the area. I have tried all the websites, but there is nothing of the sorts. Any help is appreciated. I would like to meet with other narcoleptic people and not only get answers, but maybe help someone else. If you would like to call, I have included my number. thanks!!!!

Jami Couch

615-542-5896

Tennessee

Hey Jami.  I am 26 and I was diagnosed w/ narcolepy last year.  I have had trouble dealing w/ this personally, emotionally, and w/ family and friends.  I feel very alone and no one seems to understand.  I lost a good job b/c of this.  I will give you a call as soon as I can.  Or you can call me @ 225-572-5043. 

Crystal

Baton Rouge, LA

Hi Crystal,

I'm Linda from Vancouver, WA and although I'm older than you and Jami, Narcolepsy came at me from the backside and really tried to turn my life upside down.  I didn't know anything about it and have found the Talk About Sleep Website to be soooo.. helpful.  They have regular chats that are hosted by people that are just like us in that whatever chat they are hosting they have the same condition.  They are not medical people, but for me have been a huge support.  I don't know if it's okay to post a link here, so just do a Google search for Talk About Sleep, or TAS as it's often referred to.  The Narcolepsy Chats are on Monday and Thursday evenings, but they also have chats for Sleep Apnea, Fibromyalgia, a Narcolepsy chat for younger people, I have never been to it, but I would recommend checking it out.  I try to never miss it.  They are programmed into my Outlook Calendar and you can also sign up on the website and they will send you an e-mail reminder of the chat schedules that you are interested in.  My user name there is cowgrl, so if you would like any of my information, just check out the message boards and look for it.  I'd be happy to share any information about dealing with this that I have found in the last 5 years.

Also the National Narcolepsy Conference is in October this year in Milwaukie, WS.  You can find all the information about it on the Narcolepsy Network Website.  The membership dues for that organization are very low, and they send out a really nice information packet to you.

I hope this helps, and I will also copy this message to Jami.  Good Luck, and keep in touch.  I will look for you on the chat's if you want to check it out.

Linda

Hi Jami,

I'm Linda from Vancouver, WA and although I'm older than you and Crystal, Narcolepsy came at me from the backside and really tried to turn my life upside down.  I didn't know anything about it and have found the Talk About Sleep Website to be soooo.. helpful.  They have regular chats that are hosted by people that are just like us in that whatever chat they are hosting they have the same condition.  They are not medical people, but for me have been a huge support.  I don't know if it's okay to post a link here, so just do a Google search for Talk About Sleep, or TAS as it's often referred to.  The Narcolepsy Chats are on Monday and Thursday evenings, but they also have chats for Sleep Apnea, Fibromyalgia, a Narcolepsy chat for younger people, I have never been to it, but I would recommend checking it out.  I try to never miss it.  They are programmed into my Outlook Calendar and you can also sign up on the website and they will send you an e-mail reminder of the chat schedules that you are interested in.  My user name there is cowgrl, so if you would like any of my information, just check out the message boards and look for it.  I'd be happy to share any information about dealing with this that I have found in the last 5 years.

Also the National Narcolepsy Conference is in October this year in Milwaukie, WS.  You can find all the information about it on the Narcolepsy Network Website.  The membership dues for that organization are very low, and they send out a really nice information packet to you.

I hope this helps, and I will also copy this message to Crystal.  Good Luck, and keep in touch.  I will look for you on the chat's if you want to check it out.

Linda