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Sharing Your 2009 Conference Experience

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#1 ohiolor



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Posted 01 November 2009 - 12:21 PM

Well, it's been a week since the conference ended and all of us should have returned to our normal (whatever normal is) lives by now. Having had a chance to reflect, if you attended, are there any impressions or stories that you would like to share with the others that were unable to attend.

Something that I really enjoy about the conferences is that the normal age barriers seem to disappear, I'm in my fifties, yet I had so many wonderful conversations with folks of all ages.

I also want to thank some "angels"....sadly I don't know their names, that helped out with the Hospitality room. When we were setting up for the noon opening, a mom and daughter from Fla stepped in to give us a hand...and then, Sun nite, some really great folks gathered most everything up and put it in bins etc, making my Monday morning cleanup a breeze!

If you haven't been to a conference before...do what you can to make it next year....the Network will be celebrating 25 years of patient support! It will be held at the Hyatt Regency Crystal City in Arlington VA, a suburb of Washington DC, October 8-10.

#2 hathor



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Posted 02 November 2009 - 03:21 AM

please do share!! i was so jealous i couldnt go. i proberbly wont ever make it its an awful long way from the UK and expensive to get to. ive been waiting to hear what people had to say and no-one has posted yet. I would love to go just to meet other people with narcolepsy, ive never met any one else before only on here.

#3 Audrey Kindred

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Posted 08 November 2009 - 11:26 PM

I loved going to my local support group last week to share with others news of the conference and to plant seeds for next year's.
Something wonderful was the release of nn's new "narcolepsy in the classroom" brochure. It is a thrilling new tool for community outreach. For me this has been a little life line upon returning home -- a way to feel momentum from the conference, that can counter my post-con-blues.

I find I am dreaming about the conference a lot. Rehashing it.

I love my memories of our evening gatherings. They were pretty wild and wonderful. The sing along with narcolepsy lyrics to pop songs was just as sweet ac could be. Strikes me we could all get a few friends (or a support group) together and sing these and make up more songs. Don't you think?
And then we had the pj party. I made myself into the sand woman, hense my Nick name here-- and used pink-sparkle-sand to bless people's dreams.

Another total highlight for me was Dr. Naiman's emphasis on the energy we misuse (waste) in self- judgement.
There's more to say but sleepiness has got her grip for me. Bye now.

#4 Dana



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Posted 09 November 2009 - 03:12 PM

Hi everyone. Posting on this site is new to me and feels a bit awkward but I'm glad to be able to have a forum to simply say that my experience with the conference was wonderful and overwhelming at the same time. Coming from knowing no one with narcolepsy and then being among 'my people' was really great. I met some really fantastic people. (Shout out to Mali, Sara, Sharon (my L.I. neighbor), Kelly, Noelle, Nicole, Mel & Rusty, and in my final moments there, Audrey!) I left feeling more informed and very supported... but as predicted... exhausted too. I arrived hoping I would leave feeling confident in my diagnosis. For whatever reason, and for many reasons, I've always questioned if my feelings of weakness in my arms and legs were a degree of cataplexy. I've been told by my physician that what I experience is absolutely cataplexy, but my feeling like a 'square peg' trying to fit into a 'round hole' really makes me desire to know for sure. Thanks to Mali's generous time and expertise I was able to leave with some more knowledge ... but also some more questions. By the way, I really do have to emphasize that Mali was really gracious and very kind to have heard what I was saying and to give her feelings on my experience with narcolepsy. If you read this Mali....Thank you!!!! I really also want to thank all of you that put this together. It is truly remarkable how much time and care went into every detail of planning such a great event. Bravo! Thanks to all your hard work, my husband and I have come home with some great memories, some questions answered, some new questions, and some new friends! :)