What a great post! Even though you are relatively new on this BB, you have keyed into some important issues. Let me answer your questions as best I can. I hope others will post also.

Regarding your first question (reflected in your Subject line). We had a discussion on this Bulletin Board several months ago (I think it was shortly after the Arizona SD Symposium, so probably March-May) about *degenerative* and finally decided that terminology is important. We contrasted "degenerative" with "progressive." Several of us posted on that subject (myself and Robin Stull are two I remember, as I believe Robin did some additional research) so you might want to go back, with a SEARCH, and check that thread. It was an excellent discussion.

I think we decided we have to be careful with semantics (different definitions of terms). By my lay understanding, "degenerative" means that cells die as a result of the disease and the condition deteriorates to the point that death might occur. Akin to cancer. Since I lost several relatives to Parkinson's (a degenerative condition, as you mentioned) decades ago, that is the way I perceive "degenerative." SD is not degenerative, based on this definition.

"Progressive" is another story. I see two ways in which SD could be called "progressive." One is (as most expert medical professionals who understand SD will acknowledge and it was acknowledged by a *show-of-hands* at the Michigan Symposium in 2001) that SD cases frequently come on gradually over a period of time, and then "plateau" at a certain level (mild to very severe). During this "progression," sometimes more complex symptoms (such as "tremor") may appear. The other way cases could "progress" is if new focal dystonias start. This is not common.

As far as terming our disorder, "Laryngeal Dystonia" rather than Spamodic Dysphonia, check out a thread I started, on this exact same subject, last Spring. My intent, in saying I was going to use the term "Laryngeal Dystonia" was exactly what you mention. I was getting *nowhere* with using the term SD over the years (couldn't find a job, couldn't get any positive response from friends/family, being made fun of, etc.). I thought saying "Laryngeal Dystonia" may make it easier to describe the disorder to the community. However, the subject-matter grew bigger than me. Read the thread. It's very interesting. Bottom-line (of that discussion) for me is that we need to be prepared to describe our disorder with both terms, in the setting which is appropriate. Our disorder is EXTREMELY complex (possibly more so than other Dystonias) because we are dealing with two completely different sets of professionals AND the vocal system is an entire field, all by itself. In order to represent our own cases, and our disorder, we have to be very sophicated and knowledgable with both sets of professionals.

As far as your last question(?), you and I are reading each others minds because I've been thinking about that subject also, in preparation for attending the Worldwide Dystonia Symposium in Miami in 7 weeks (can't wait!). I'll try a brief answer, with some history, but if any NSDA Board Members want to correct me, I'm correctable. This is all info I've picked up over the years. I only represent the NSDA in my own territory (California and Hawaii) and cannot speak for the Association, regarding exact policies and plans.

The fact that the NSDA is "national" rather than "international" likely has something to do with its non-profit status in the United States, as it was being formed in 1989. It started in Michigan (prior to involvement from the international community), with some diligent, selfless volunteers (former President Larry Kolasa being the patient-originator and our current President, Dot Sowerby, being one of them) working their behinds off out of their kitchens. In 1997, needing to be more effective and efficient in order to reach more patients, the volunteers went under the professional management of the Dystonia Medical Research Foundation (DMRF) in Chicago. Since 1997, the NSDA has taken on an "international flavor" with David Barton of New Zealand becoming the first International Communications representative as well as with the World Wide Web (internet) supporting our wonderful Bulletin Board.

At this point, even though the non-profit which represents us is entitled the NATIONAL Spasmodic Dysphonia Association, the organization and this BB (which the NSDA pays for, so that we can all support each other) is truly *international.* We are so lucky in being able to form this global community (SD-wise) through the Internet.

Hope that helps. It's just information I've learned at symposiums and on this BB over the years. These were great questions, so thanks.