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Narcolepsy Informational Help


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#1 AssociatedWithFire

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Posted 20 November 2008 - 05:15 PM

I dont know if one exists, if it does please help me find it and if not would anyone be willing to help me put together a packet that we as a community could give to people who we need to help understand what we are going through. For example try as I might I cant get my mother to understand the finer points of narcolepsy that are beyond my controll. If I had a leaflet or somthing of that nature I think it would help get information she could understand across to her. It seems that the people that I need to understand what I am going through (hehe seems) dont really get it, and I am horrible at trying to maintain a thought line long enough to explain anything. I think Im rambling now but I hope Im getting my idea across.

#2 ohiolor

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Posted 20 November 2008 - 06:32 PM

Hi Fire,
The Narcolepsy Network has an educational material link on their home page. There are all sorts of things listed that could help you explain the "joys" of N. Also, on the home page, is a very good FAQ link which may include all of the information you need to help your mom and others understand more about N. Take a look through the posts on the message board (we have some excellent writers here) and see if any will help with your explaining things....in fact, if they have internet access, have them come join us on the boards and ask questions....odds are someone here will be able to help. I don't have N but my husband does. I have found the message boards a wonderful place for me learn more about this disorder, and understand what my husband is going through.

Lorrie

#3 AssociatedWithFire

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Posted 21 November 2008 - 02:01 AM

QUOTE (ohiolor @ Nov 20 2008, 06:32 PM) <{POST_SNAPBACK}>
Hi Fire,
The Narcolepsy Network has an educational material link on their home page. There are all sorts of things listed that could help you explain the "joys" of N. Also, on the home page, is a very good FAQ link which may include all of the information you need to help your mom and others understand more about N. Take a look through the posts on the message board (we have some excellent writers here) and see if any will help with your explaining things....in fact, if they have internet access, have them come join us on the boards and ask questions....odds are someone here will be able to help. I don't have N but my husband does. I have found the message boards a wonderful place for me learn more about this disorder, and understand what my husband is going through.

Lorrie



Thank you very much for the helpful direction. Im going to read those post right now.