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 learning to live with dystonia. There is nothing "official" here, it's just our attempt to share our own cumulative experience, plus some of the things we've learned from others during. the nearly 15 years we've been moderating this bulletin board (in one form or another).

• The DMRF web site is also a good place to learn about dystonia and locate support resources or literature.

• The doctors who are most knowledgeable about Dystonia are neurologists who specialize in Movement Disorders, and there are very few of these around. Most of them are attached to major teaching hospitals in big cities. (On the board, these doctors are usually referred to as MDS, short for Movement Disorder Specialist.) Although not perfect, the best referral source we know of to find an MDS is the Dystonia Medical Research Foundation's Web Site.

• We have heard horror stories about orthopedists, general neurologists, and primary care physicians who totally mis-diagnosed dystonia. OTOH, we have heard both wonderful and disturbing reports about caring (or coarseness) on the part of some MDSs. Like all other people, some are caring and some are overly impressed with themselves. The idea here is to really look for an MDS or a neurologist YOU can work with. You may read of a doctor who sounds fabulous on the bulletin board, possibly see him/her, and leave feeling somehow cheated. Yet there is quite possibly a doctor near where you live who nobody in the dystonia community has yet heard about, but who is just right for you! That is the beginning of a great adventure. One we'd all rather not have, but an adventure nonetheless.

• Patients with Spasmodic Dysphonia (dystonia of the Vocal Cords) may be treated by speech pathologists and Otolaryngologists (ENTs). Those with Blepharospasm (dystonia of the eye lids) may be treated by a MDS or an ophthalmologist with specialized training.

• Physical and Occupational Therapists can be helpful, but they must be knowledgeable about NEUROLOGICAL DIAGNOSES. Many PTs are trained in sports medicine and orthopaedic rehab, which is totally different from what you need. Those without neurological experience may be helpful in finding and helping you learn to use adaptive devices, but may be prone to a "no pain/no gain" philosophy that is appropriate in sports medicine, but may be harmful to patients with neurological disorders. It is important that your therapist coordinate closely with your neurologist.

• Many dystonia patients ask "why me", and/or devote time and energy to exploring the causes of their dystonia. This process is often an important part of personal adjustment and learning to live with a disability. In some cases (especially drug-induced dystonia) it may be helpful in diagnosis or treatment, while for other patients its value is purely psychological. Using a journal, posting questions on the BB, or speaking to a counselor may be helpful in putting this process into proper perspective. It may also be useful to discuss with your doctor the extent to which this information is valuable in the management of your individual case.

The Moderators:

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