As moderators of the bulletin board, we'd like to welcome any newcomers. The purpose of this board is for patients (and their families) with any form of Dystonia to exchange information and support. We hope you will become an active participant in our discussions. As the moderators, we try to keep the board free of commercial messages, personal attacks and other distractions that interfere with that purpose. All messages on this bulletin board represent the personal opinion of the individual posting the message. The Dystonia Medical Research Foundation and the moderators do not assume any responsibility for verifying the identity of any participant or for the content of any message posted here. Nothing on this bulletin board should be considered medical advice.

For the benefit of those who are new - whether newly diagnosed or new to this bulletin board - we'd like to share a few suggestions and observations, about using the bulletin board effectively.

• If you are very depressed or think you might be suicidal, please read the message Are you feeling severely depressed or suicidal? This bulletin board is not a crisis intervention center. With a few exceptions, we do not have formal training in counselling people who are on the brink of suicide.

• Similarly, if you are experiencing severe symptoms or think you may be having a reaction to your medication, please contact your doctor or an emergency room. The members of the BB are not doctors, and are not equipped to provide specific medical advice.

• There are very wide differences between patients, and between different forms of dystonia. It can be dangerous to try to develop general "rules" or assumptions from your personal experience with this condition. Similarly, there is a danger in accepting what another member of the BB says as "the gospel". Each of us need to carefully consider what feels right for us personally, and then in an ideal situation, discuss it with a doctor whom we know and trust. If you don't have a doctor who you trust AND can discuss your concerns with, you should be looking for another doctor!

• Information posted on this board, as well as other on-line sources of information about dystonia, represent the opinions and experiences of their authors. It should not be considered the same as advice you might receive from your doctor. Much of the advice is excellent, based on personal, practical and sometimes painful experience; but you should consider carefully before making any changes in your treatment because of information you read here. We urge you to discuss any medication changes with your doctor.

• From time to time you will find notices posted on this bulletin board about other web sites and forms of on-line support. You will find links to some of them on the "On-line Support" page or the " links " page of the DMRF web site. We urge you to take advantage of any and all sources of information to help you understand and cope with Dystonia. There is a wide variety of information on the internet, both good and bad; we again remind you to carefully consider the source of information, and to discuss any medication or treatment changes with your doctor before acting.

• This bulletin board is supported by the Dystonia Medical Research Foundation. Founded in 1976, the Dystonia Medical Research Foundation (DMRF) is a 501(c)3 organization dedicated to serving all people with dystonia and their families. Since its inception, the DMRF has grown from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and network of volunteers with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia. For more information, visit the foundation's website at www.dystonia-foundation.org .We hope that you will support the Foundation and its work in whatever way(s) you can.
  

• If you have any comments or questions about this message or about the bulletin board, please click on the FEEDBACK button at the top of the page

• In posting to the BB, chat rooms, or other dystonia-related sites, you should observe the same level of caution and discretion you would in posting to any other site on the internet. Some observations about privacy & safety issues can be found at the end of the "Rules of the Road" FAQ

The Moderators:

Bob Campbell, Mary Beth Chan, Linda Walking Woman & Jeff Harris