Phoenix - ABers Lunch

Anyway, I was wondering who I'll be seeing at this event. Is there anything we would like to make sure to talk about? Should we make an agenda? (so fun for lunch! but then again I would hate to waste the time.)

I wish you well, Robin (AB/So. Calif.)

:-)

Good for you and Bill and Katrina and Colleen and others, et al.

During my first SD-Symposium 4 years ago, I only met one patient who ID'd herself as AB. She was a Speech Therapist by trade but could only whisper at that point (I think her case was quite new and quite debilitating to her). We sat at the same table at lunch (8 of us...she was with her husband), but I know she was very depressed being so voiceless. Alot of tears shed during that symposium with her not being able to talk at all. She was encouraged by Dr. Bastian's presentation there, as he has had more success with Botox treatments of AB-patients than many doctors have.

As we have discussed, this particular SD-Symposium is bringing many more attuned AB-SD'ers together than any of the previous ones. The connections you will make will be so important.

As an AD-SD'er (after surgery paralyzing one vocal cord), I sound/talk more like you than most AD'ers (Katrina knows that because she descibed me as sounding "asthmatic" when we first talked) but I will not crash your lunch. I just hope, after you all get together, that maybe you can all spend 10 or 15 minutes sometime during the symposium educating all of us on something which has worked for you. And, I want to meet all of you in person.

In full support (my computer is not working well these days so I'm having alot of trouble getting messages posted),

It was only you and Robin and Katrina that I brought together, after meeting Katrina in person last January...and then (WHEW!!!)...a Symposium in Arizona! Her home-territory! We had no idea that this would happen when we had lunch 13 months ago. You all got it going and you did the rest of it by yourselves. Blame Katrina. She's the one who inspired me.

Like I said, I may sound like you but I'm not crashing your party. I'm depending on you to educate the rest of us however. And, we will all meet in AZ. No doubt!

"Lunch" is a very short time at SD-Symposiums (you still have to eat). It's only an hour. I hope it is long enough for you all to exchange e-mails addresses, however. Just keep us posted!

Best wishes!

There were great notes & transcript & highlights from the Southeast symposium; hopefully, the same will be done for Phoenix. But we'll let you know pertinent info as well. And if the opportunity comes up I'll make sure to ask specifically about the Maragos surgery.

Actually, there are always great notes from the Symposiums. The NSDA makes sure of that and we participants are always welcome to file our own impressions via the BB or in e-mails. It's a "patient symposium" so answering questions from patients is what it is all about.

In Michigan for the Midwest SD-Symposium (March, 2001), David Barton was there and produced a very comprehensive report online as well as in the NSDA Newsletter. In Greensboro, NC for the Southeast SD-Symposium (October, 2001), I was told that tapes were produced (I know who produced them; but, in case he wants to be anonymous, I will not reveal his identity here) and then given to Anne Brett who did an incredible job in transcribing them and writing an extremely comprehensive report, even though she wasn't there. She also wrote an excellent report on the DMRF/NSDA Leadership Conference last Summer and she was there.

With the various symposiums and the various doctors, BB-participants may have questions they wish to have fielded, even though they can't make it in person. I take questions from other BB-participants as you are doing also. Some of the questions from the doctors are actually taken off the main stage as it is difficult for most of us to ask a question in a large room. There was alot of "question-asking and participation" from the audience (stand up in a large audience and verbalize) in Michigan though...which is one of the reasons it was such an excellent SD-symposium!

Re questions and notes, there are always 3x5 index cards to be collected from the audience. Re perspectives, we will all have our own. Regarding a transcript ~ there will be one; and, based on past history, it will be good. I am taking several questions to the symposium (because people have asked me to do that) and I'd suggest, if BB-folks can't make it but they have a burning question, please write to someone on private e-mail who may share similarities of your case and have them ask for you at the Arizona Symposium.

Can't believe it's just over a week away!

You make a good point that we all have different schedules, coming and going to/from the symposium. I've found that the two best times to get to know others at the symposiums are at the Welcome Party on Friday night (and extending after that event) as well as at dinner on Saturday night (and extending after that event). The one-hour lunch on Saturday flies awfully fast while also chewing and digesting.

"Most" symposium attendees get to the hotel on Friday afternoon and leave Sunday morning. I hear from a reliable source that the hospitality room (where the Welcome Party will be held Friday evening) will be open before the party starts, so that people have a place to go when they first arrive. I also hear that there is an outside-area at the hotel which is a good gathering place during other hours.

Does someone want to keep track of all of our schedules...arriving and departing, so we don't miss anyone? I'm having trouble keeping my own schedule these days. In big *road-trip-packing* mode currently. Will be checking in on Thursday.