> Using the narcolepsy support website, Need clearer guideposts.

First of all, I have used computers when I completed my two doctorates (one in law (1983) and one as a nurse research scientist, 1998). So I thought I was comfortable at least in responding to a sleep survey. Boy was I wrong.

Some background: I was diagnosed with narcolepsy - cataplexy w/ sleep paralysis, hypnagogic hallucinations, automatic behavior, sleep attacks, disturbed night-time sleep, not controlled with medication about 12 years ago.

I am unable to tolerate any medication without side effects. The provigil I take causes nausea, makes my muscles tense, makes me sweat a lot, and causes my teeth to clench. But that's mild compared to the adverse effects for the cataplexy medications (shortness of breath, double vision, depressive thoughts, increased automatic behaviors).

I am going to see a neuro psychologist to see if I can still work with accommodations, and if so, what kind of accommodations. My doctor thinks I should accept my limitations and apply for total disability.

A few thoughts on the website: I was overwhelmed by all the stuff on the webpage. I wasn't sure where to look first, distracted as I was with the amount of detail, so that I couldn't find the survey. It would help if the background color wasn't gray or if instructions could be posted on how to turn te background color to white. I also looked for the rules of etiquette for a novice user so that I would know how to navigate the webpage, understand what the icons meant. I wasn't sure when I read something if I should post a new topic, a reply, or what. I don't know what guided mode means or normal mode. What does it mean to close all tags? Now that I've written this note, do I just press return on my computer to send it? Should I press my assistant button or help button to find out?

Well, it looks like you figured out the new topic creation alright, or else I wouldn't be reading this. The colors and look will be changing soon, at long last. If you wait a tad bit, I will create an illustrated, "How to use this site" guide. It will take a while to make however.

To point you in the right direction for the survey, try these instructions:

1) Click this link: http://z15.invisionfree.com/Narcolepsy_Sup...hp?showforum=23
2) On that page, click "1. Do You Have Narcolepsy?"
3) There are two options, "Yes" and "No".
4) Click the circle next to the corresponding selection.
5) Click "Vote!"
6) Near the top look for "People With Narcolepsy->Narcolepsy Discussions->Sleep Survey"
7) Click "Sleep Survey"
8) Repeat from step 2, except choose the next question down ("2. Sleep Study", etc. down the list).
9) Note on questions 3 & 4 you may select more than one option, the circles are replaced with boxes, and the dot in the center becomes a check mark. (Example: for "3. Medications", you can select, say, "Provigil" and "Xyrem" if you take both medications, or choose just one selection if you take only one medication.)

Tags are things such as [ b ] or [ img ] (minus the spaces) that do different effects. "Close Tags" automatically puts a [ /b ] or [ /img ] at the end of your post, or you can add the close yourself, by adding the close right after you want the tag to stop. The list of tags and what they do are:

[ b ]Bold Print[ /b ] = Bold Print
[ i ]Italicized Print[ /i ] = Italicized Print
[ u ]Underlined Print[ /u ] = Underlined Print
[ size=*#* ]Sized Text[ /size ] = Size 10 Text*
[ font=*font name* ]Font Text[ /font ] = Times Font**
[ color=*color* ]Colored Text[ /color ] = Blue Text
[ url ]*url link with http://*[ /url ] = http://www.teamidesign.com/narcolepsy
[ url=*url link with http://* ]Text[ /url ] = Team iDesign - Narcolepsy
[ img ]*link (url) to image*[ /img ] =
[ b ][ u ][ i ][ color=red ]Combination Text[ /b ][ /u ][ /i ][ /color ] = Combination Text
[ quote ]Quoted Text[ /quote ] =

Remember: Remove the spaces for the code to work!!!
*Sizes are NOT based on the standard size scale, sizes are:
1 2 3 4 5 6 7 8 9 10 etc.
**Possible fonts are: Arial Times Courier Impact Geneva and Optima.

Is that helpful for you?
Chris"Toph4er"