We talked about this at the NSDA meeting in Scottsdale.Dot Sowerby (the incoming NSDA President) and the NSDA staff in Chicago are arranging a chat room at the WeMove website specifically for SD. There are several chatrooms for dystonia generally on the internet, but this would be for SD people.
The url is http://www.wemove.org/dys_chat.html
Click on "Continue" to accept the terms and conditions. Then type in a nickname and click on "Connect".
This takes you to the chat foyer. Click on the "Rooms" tab and you will see the spasmodic dysphonia room.
Note - there are several forms of chat available on the Internet. This one has the advantage that no special software is needed, and you can access it on the www using a web-browser. However the chats cannot be logged, and are not private.
Dot and I will soon be advertising this service to SD people in the On-line Support group, and we will be calling for volunteers who would be willing to host sessions and greet people etc. Neither Dot nor myself have the time to do this.
Chat rooms for conditions like SD usually work best if there are regular (and convenient) times for users, and if people commit to being there for sometime, so that the room doesn't appear empty. It will be interesting to see what response we get.
David Barton (AD/SD, Auckland, NZ)
NOt meaning to be totally ignorant but...What's the difference between the chat room and this BB? Aren't you typing in your conversation in both cases?
Is the only difference that you can talk in real time with anyone who's around the room?
Yes Karen, Bit like real life actually. With SD we need a little time to configure our thoughts and how we are going to deliver them. A chat room might be too instant. The BB is the perfect media to chat. Why have an instantanious chat room, what's the point?Fly in the ointment (David)
Well, in my opinion, the reason to have a chat room is for just that: to CHAT! To talk to others with in real time and not have to use our voices!!! There is a difference between BB and chatting. For those of us who enjoy and appreciate chatting with our Sd(and other dystonia friends), having our own chat room here is long awaited.julie
--modified by wajewel at Thu, Mar 28, 2002, 22:08:32
Expect an e-mail about this in early-mid April if you are on the support group mailing list.David Barton (AD/SD, Auckland, NZ)