Since you wrote to me on private e-mail also, regarding the same issue, and *someone* (re your post) is me, I'll briefly answer.

Brain surgery (DBS) has been recently effective for dystonia patients. DBS has been used successfully with Parkinson's patients for several years.

At the Miami Symposium, we all met Allan Womac from Washington State, Steven Shoemake from Texas and Ed Cwalinski from Pennsylvania. They were there in person to tell their personal DBS stories and laud the media professionals who scripted and promoted their stories on TV.

Also, Dee Linde (from Oregon) and Remy Campbell (from BC) have also recently had DBS's and have improved their lives due to brain surgery. The female perspective. They were both in Miami.

We symposium attendees all saw the INCREDIBLE videos of before and afters, with the guys. Believe me - there was not a dry eye in the house in observing these three young men, totally contorted and non-functional due to dystonia. And then, their new lives after DBS. You had to be there to fully appreciate it.

DBS is not yet available for SD patients. But, it is now available for severe dystonia patients and I find that highly encouraging. So much progress is being made.

Dwight...get yourself to a symposium soon. Eight years away? Much has happened in the interim. Things are changing/improving by the month.

I had bilateral DBS surgery in 2000 and now I do believe in miracles! DBS is not effective for dysphonia or blepharospasm. "They" are not really sure why it doesn't work for these types of dystonia - probably a different area of the brain and different mechanics involved. But don't give up hope! And get yourself to a Symposium!!

It was great to meet you in person in Miami, after meeting on the BB years ago and talking by phone.

I was personally moved by your comments on Sunday, in the "Depression and Spirituality" session, re why you hadn't attended a symposium until now. As I said, when I was interviewed and ID'd myself as a "symposium junkie," they have kept me going and are my most effective coping mechanism for the fall-out from my individual case.

That session you moderated on Sunday was awesome. It's the best break-out session I've ever been to at a symposium. Since the house was packed, I doubt I'm alone in that assessment. You, Dick, Glen and Mark created a powerful forum.

Thanks for your contibutions to the symposium. Betcha anything you and I will see each other again real soon, at future ones. Good luck to you and Susan on your new group efforts up in the Portland area!

It was so awesome to finally meet you in person! You were one of the fisrt people I "met" after being diagnosed in 1997 and I'll never be able to put into words what a great support and inspiration you have been for me. You are one of those Angels I mentioned in my presentation. Thank you for your compliments and I believe I am now in the same category as you "Symposium Junkie". I attended the Blepharospasm Convention last year and now this one in Miami. When's the next one?? See you there if not sooner!

The next big one (including all dystonias with patients from everywhere on the globe) isn't scheduled for three years. Darn. As Kelsey Oster said when speaking Sunday at lunch, she could hardly wait for this one, with the support it offers to her. Kelsey was the *star* of the video "I am Not Dystonia" which was premiered in Victoria 3+ years ago. She sure has grown up since we first met her. It was great to see her, so poised for a teen-ager, speaking in front of a huge crowd about how much she enjoyed being there.

The next SD one is March 8th in Washington, DC. so that's what we voice folks are prepping for.

Frequently, there are some excellent Regional Dystonia Symposiums, such as the one in San Diego on 9/21/2002, sponsored by the DMRF, UCSD Medical Center and Martha Murphy's dystonia support group down there. Might want to talk to the staff in Chicago about the possibility of doing another DMRF Regional Symposium out on the West Coast, sometime in the next year or two.

It will be interesting to find out where the next Worldwide Dystonia Patient event will be held. We've known about Miami since 1999. A number of locations have been mentioned as possibilities for the next one. It takes a long time to plan these things though so I imagine we'll hear early next year. Remember Montreal was mentioned on Friday as one possibility? Can't wait to find out.

Glad you had such a great time.