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Survivors Speak Up! 02December2001 | | | | | THIS WEEK'S QUESTION:
What shall we do, in 2002? "FACES2002 CONFERENCE" As the thought of a conference on encephalitis has now come to reality for September 2002 in Ottawa Canada, it raises this (un-official) question. What do you anticipate for the conference? A serious meeting? A bit of fun? I'll make every effort to forward your input to the Committee.... so here's your chance! | | | | | | annette | | hiya just to meet other survivors | | | | | | hugh betcha | | I would like it if the conference were attended by some medical experts in the fields of neurology or neuropsych. That is to say, someone who can share data gained from research that would help us to learn more about what we survivors can expect over the long term. Sample topics: can e. relapse? do the sequelae get worse as we age? is e. linked to other neurological disorders like Parkinson's or MS? | | | | | | | | | | | Sherry D. | | I would love to meet my fellow survivors and have variety of different interactions with them. I wouldn't mind a professional speaking on a certain topic but this conference is for us survivors. It being the first conference, we can always add or change things for the next conference. I, personally, would like to see a laid back approach, fun interactions, maybe a special group for spouses/caregivers to voice their own concerns etc. Plus there maybe children attending too. Just a few thoughts to keep in mind. Thanks for reading my 2 cents worth. :) | | | | | | | | Wendy | | I'm fascinated with the idea of putting faces to names. Sincere friendships have been formed via thewww... and we've not yet sat across a table and chatted over coffee... or tea, for that matter. | | | | | | cowgirl | | I believe that it would be nice to have a theme song....I like the following one, it kind of represents what support is for me: You've Got A Friend When you're down and troubled and you need a helping hand and nothing, whoa nothing is going right. Close your eyes and think of me and soon I will be there to brighten up even your darkest nights. You just call out my name, and you know whereever I am I'll come running, oh yeah baby to see you again. Winter, spring, summer, or fall, all you have to do is call and I'll be there, yeah, yeah, yeah. You've got a friend. If the sky above you should turn dark and full of clouds and that old north wind should begin to blow Keep your head together and call my name out loud and soon I will be knocking upon your door. You just call out my name and you know where ever I am I'll come running to see you again. Winter, spring, summer or fall all you got to do is call and I'll be there, yeah, yeah, yeah. Hey, ain't it good to know that you've got a friend? People can be so cold. They'll hurt you and desert you. Well they'll take your soul if you let them. Oh yeah, but don't you let them. You just call out my name and you know wherever I am I'll come running to see you again. Oh babe, don't you know that, Winter spring summer or fall, Hey now, all you've got to do is call. Lord, I'll be there, yes I will. You've got a friend. You've got a friend. Ain't it good to know you've got a friend. Ain't it good to know you've got a friend. You've got a friend. ALSO: I think there should be an introduction time, where members might be able to get up and introduce themselves, and say a few words with a time limit of say 2-3 minutes, about the type of enceph they survived and when they had it...their recovery etc..... YES: speakers specialists would be great for an afternoon..... AND: meeting everyone, seeing who is who -all of that would be great! Possibly a pot-luck dinner....E-Package handouts, nametags etc. | | | | | | cnw | | I think there should be some sessions by medical professional providing information to the public and could also be set for other medical professionals I think this is important because there are so many doctors even ones that are supposed to be top notch neurologists that seem to not know any thing about the long term effects of encephalitis and possibly residual effects of this disease I believe this would be helpful for health professionals or where people can take the info back to their health professionals | | | | | | donna s | | I like the idea of neurologists about residuals and long term studies of e, including promising research in neurology being undertaken. I would also like to invite certain neurologists that don't believe in e, or say it's all in your head, to a pie throwing contest (would we have to tell them?). Most of all, I want to meet and have a few happy tears with so many wonderful people I've met @ encep global. And maybe, I won't be able to lurk anymore! - just shy   | | |
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