 |
|
|
| ||
Spasmodic dysphoniaTopic pertaining to this neurologic disorder.Dystonia Medical Research Foundation (DMRF) A US Support group that disseminates quite a bit of information regarding SD. This seems to be a fairly balanced view of spasmodic dysphonia. National Spasmodic Dysphonia Association has a new site (2/2/01) with a voice recording of SD on it (the audio quality is a bit hollow sounding) (there are some recordings on this site as well). They present a few opinions on treatment and the site is still under construction. They have a support group as well. International Dystonia Online Support Group is an organization with frequent emails on dystonias. They share quite a bit of information. The spearheads seem to be Anne Brett and David Barton. The website is fairly extensive. Online Support Group Bulletin Board A place to give and receive opinions. Speechless: Living with Spasmodic Dysphonia is the biography of NSDA Board Member Dot Sowerby's experience with SD as told to Betty Schonauer. Washington State Chapter of the DMRF. A support group site. Meeting times are posted. You need to register to read some intersting personal stories. Index of other SD web sites. The home page of this site provides information on a number of focal dystonias and is maintained by Anne Brett. Index of other SD web sites. This is a rather stream of consciousness listing maintained by Micki Nellis but it is long. NIH The government renders a very brief opinion. The Hoarse Whisperer A writer for the Pittsburgh Post-Gazette details his initial experience with Botox... and it is not a good one. My reply was to write a page since I hear this complaint somewhat frequently. SD article by Diane Rehm Diane Rehm is a radio announcer for National Public Radio who developed spasmodic dysphonia and went through a series of aggravating misdiagnoses before being correctly diagnosed and treated for the disorder. She has used her high profile status to educate the public on the disorder. This article is an interview with her. SD & "The Diane Rehm Show" Diane Rehm's site at radio station WAMU. On November 3, 2000 she interviewed a Baltimore laryngologist, neurologist and a Washington, D.C. Speech Therapist. You can listen to this show in RealAudio Botox Injection for Laryngeal Spasmodic Dysphonia An information page for patients from the University of Washington in Seattle, WA that represents the opinion of the treating physician. Eastern Virginia weighs in on SD. Jefferson Medical School in Philadelphia has a brief blurb. Drs. Postma and Koufman at Wake Forest in North Carolina have some opinions regarding spasmodic dysphonia. Dr. Jones in Texas has some opinions regarding spasmodic dysphonia. Medical references are well documented. Dr. Orloff at UCSD has a brief note. Morton Cooper, PhD is a speech therapist who does not believe in the use of Botox and presents his strong, solo opinion on therapy for SD. I have reviewed a videotape of his and my personal impression is that much of what he shows as patients with SD are really patients with non-organic dysphonia which can mimic SD and be confusing to many physicians. Certain types of speech therapy can be very helpful for non-organic dysphonias. Dr. Isshiki has been a forerunner in the development of laryngeal surgery. While I remain skeptical that his surgery is appropriate for the condition, here is where to find his opinion. top |
Contact the author: James P. Thomas, MD
|
