Knapp-frazer.com

Winter 2009
NORTH BAY AREA UPDATE
Deep Brain Stimulation for Dystonia
Symposium
Support Group Meeting
April 17–18, 2009, Nashville, Tennesee
The North Bay Dystonia Support Group (NBDSG)
Co-sponsored by the Dystonia Medical Research meets Saturday, February 14, 1:00-4:00 p.m. at
Foundation & DBS forDystonia Bulletin Board Kaiser Medical Center in Santa Rosa in Medical Office Building East, Room E-5. See flyer for details. Symposium will take place at the Embassy Suites Upcoming Meetings
Nashville at Vanderbilt in Nashville, Tennessee, Mark your calendar for these 2009 meetings.
Friday April 17 and Saturday April 18, 2009. • May 16 (Room E-5) (3rd Saturday in May)
• August 8 (Room E-5)
• November 14 (Room E-5)
We Missed an Issue.
Dystonia Advocacy Day
And our quarterly meeting in November, 2008.
May 5–6, 2009
Did anyone notice? The volunteers decamped en masse (all three of us), but we’re The Dystonia Advocacy Coalition invites you to par-
ticipate in Dystonia Advocacy Day in Washington, DC on May 5-6, 2009. The goal is to inform our legislators about dystonia and how it has affected our lives. To register for Advocacy Day or receive more information or phone 888-346-3673. WE MOVE Needs Your Help!
The DAC is comprised of the following dystonia advocacy groups: Benign Essential Blepharospasm To better understand the management of dystonia,
Research Foundation (BEBRF), DySTonia, Inc., WE MOVE is conducting a survey of the dystonia Dystonia Medical Research Foundation (DMRF), community about the experience of dystonia and its National Spasmodic Dysphonia Association (NSDA), management. If you have any form of dystonia, you and National Spasmodic Torticollis Association are invited to complete this survey. Tell your doctors about this survey so that they can tell their patients. Participation in this survey is voluntary, con- fidential and limited to adults living with dystonia Check out our support group website at
or caregivers of children living with dystonia. To participate, click on or go to this link: The goal of the survey is to collect and analyze responses, and report back to the movement disor- der community. WE MOVE, the Dystonia Medical Research Foundation (DMRF) and the National Spasmodic Dysphonia Association(NSDA) will publish a report on survey results on their websites. Thank you for taking the time to complete the Oral Medication and Dystonia
with dystonia are mostly from the older generation of this drug class: Some medications should be avoided by individu-
als with dystonia. These include most neuroleptics, some antinausea medications, some antidepressants and a few others. All of the medications listed here have legitimate uses. Medications on the “avoid list” will not necessarily worsen dystonia. Ironically, some medications on the “avoid list” are sometimes used to treat dystonia and sometimes this use is justifiable.
Neuroleptics are normally used to treat psychosis,
• Protriptyline (Vivactil®)• Trazadone (Desyrel®) bipolar disease and depression. Neuroleptics work by blocking the transmission of dopamine in the brain. Benzodiazepines are used to treat dystonia, but a
“High potency” neuroleptics are the most likely to few benzodiazepines are reported to cause or worsen dystonia: Alprazolam (Xanax®) and Midazolam Antiseizure (anticonvulsant) medications are
• Pimozide (Orap®)• Trifluoperazine (Stelazine®) used to treat epilepsy. Some anticonvulsants may rarely cause or worsen dystonia: Carbamazepine Lower potency neuroleptics have a slightly lower Calcium channel blockers are common medications
used to treat high blood pressure and heart disease. A few types rarely cause or worsen dystonia including • Loxapine (Loxitane®)• Mesoridazine (Serentil®) U-Tube Video on Generalized Dystonia
Paddy Doyle’s video demon-
• Thioridazine (Mellaril®)• Thiethylperazine (Torecan®) “Atypical” neuroleptics are the newest subclass and are designed to have a lower risk of dystonia: Certain atypical neuroleptics have a very low Some antinausea (also called antiemetic) medi-
cations are similar to neuroleptics and should be autobiographical account of abuse he suffered as an orphan and the experimental brain surgeries per- One of Ireland’s leading disability activists, Paddy has served on the government-appointed Commission We would all
on the Status of People with Disabilities. In 1984, he like to find
received the Christy Brown Award for Literature for A few antidepressants possess a small risk of caus-
the television play “Why Do I Bother?” and in 1993. a cure for
ing or worsening dystonia. Since many people with a Person of the Year Award for “An Outstanding dystonia and
dystonia have depression, many take antidepressants. research is what
The newer generation antidepressants are generally safe is going to help
for people with dystonia. Antidepressants associated us do that!

Source: http://www.knapp-frazer.com/0109%20Announcements%20(2).pdf