Care4Dystonia, Inc. » Finding Support

Finding Support

We, at Care4Dystonia, Inc. ,continue to receive emails from individuals suffering with various forms of dystonia requesting quidance, care direction and help. In an effort to help people obtain the necessary answers, assistance, finding physicians, exchanging stories and forming contacts and relationships with us, we have decided to create a Voluntary Support Committee so that everyone will receive the best possible answers and help that they deserve in a an open, detailed manner from a panel of volunteer experts. Everyone on the panel have donated their time and efforts in a collaborative manner to assist you with your concerns, answer your questions and provide the information you need as science reaches towards new treatments and a cure for dystonia. C4D is grateful for the assistance of each of the individuals and organizations listed below as our newly formed Support Committee.

Please contact us with your questions and concerns. We promise to answer you in a timely manner. That’s why we are here - for you. You matter to us!

Please also take a look at our Support Links available in the Library for International Groups.

US-Based Groups :

Care4Dystonia ED Forum NEW ! ( Moderated, Uncensored )
Dystonia Dreams ( Generalized dystonia Forum )
Dystonia Association of Kentucky ( Coffee Chat every Wed )
Dystonia International BB Yahoo ( Moderated )
Dystonia BB Yahoo (Moderated )
Dystonia, Inc ( ST Forum )
ST Bulletin ( ST Q&A BB)
NSTA
DMRF Support BB ( Censored and moderated )
- For Musicans
- For Dystonia
- For Dysphonia
OMD Network, contact irphil@earthlink.net
MSN Dystonia BB Friends with Dystonia
MySpace Dystonia-Neuromuscular BB
Tremor Action Network ( TAN )
DBSSurgery Yahoo BB ( Moderated > Great BB about DBS )
Tylers Hope ( Multiple BBs for Kids and parents affected by DYTI gene dystonia form )
Tardive Dyskinesia ( BB )
WeMove ( Generalized BBs )
Ataxia Support ( Gait BB )
Pain Support- Information
Migraines, a secondary effect of ST Forum
http://community.wegohealth.com/group/dystonia NEW !

If you would like to join this committee and have a special expertise in an area, simply contact us and we’ll be happy to have you in our network of volunteer supporters!

Our Voluntary Support Committee : Call on them !

ST Support
Dr. Bob Zozus, PhD drbobz@bellsouth.net

Alternative Medicine - Brain Biochemistry
Dr. Robert Pastore, www.pastoreformulations.com.

Dyskinesias, Dystonia, Diabetes, OMD and cervical support
“I am very interested in joining your support committee. I know how important it is to have others with the same disabilities to talk to and help. I have oralmandibular, cervical, the entire right side, dystonia, dyskinesia, diabetes and tremor. Of all, the tremor is the hardest to deal with. I also do acupuncture for the pain and it is wonderful.”
Sharon Davis, sharjer@pahrump.com.

Baclofen Pump Info
Information about Intrathecal Baclofen Pump Therapy Info:
Jan King, purplerosejmk@aol.com.

DBS Care and Questions 1 to 1 info
“I have enjoyed the benefits of this wonderful merciful gift of normalcy ever since Oct 1999 for ST….if you have people who would be interested in talking with me about this surgery, I would be happy to discuss it with them.”
Joanne, jweb101615@earthlink.net.

Chiropractic Neurology Care
www.functionalrestoration.com

Disability and Employment
Exceptionalnurse.com, run by Donna Maheady, RN, MSN, PhD.

Exercise, Emotional Health, Healthy Living
Comprehensive exercise programs, dealing with cervical dystonia:
www.portraitsindetermination.com
Contact Linda for questions and assistance.

Dopamine-Responsive Dystonia
www.drdcentral.com or mark@drdcentral.com.
(Run by Mark Colgrove, who has two children with this form of dystonia.)

Tardive Dyskinesia
To talk with someone suffering from a drug-induced dystonia, contact Donna, hilltopok@msn.com.
Alternatively, the website is www.tardivedystonia.org.

General Information About Care4Dystonia
Beka Serdans, infoc4d@aol.com.

Focal and Musician Care
Are you a musician with focal dystonia? Contact gsestrin@aol.com, leader of the Musicians With Dystonia group.

Dysphonia
Information about dysphonia (vocal cord dystonia):
www.dysphonia.org.

Selective Denervation
University of Florida Neurosurgical Department Home page and scan for “Dr. Carlos Arce” in Jacksonville, Florida or this selective denervation web page pdf file. Also consider “googling ” neurosurgeon Dr. Robert Grossman in Chicago, Illinois, Obama country !

Nutrition
Linda Rafferty, Linda@PathToGoodHealth.com.

Official DBS Info
Looking for the most experienced Medical Center for Deep Brain Stimulation in your area?
Log onto www.medtronic.com or www.newhopefordystonia.com.

Our Thoughts about BBs : Recently we have scanned many of the BBs online; several are very good; others miss consistent moderators. It is our belief that medical information shared across the BBs that contain questions should be ONLY answered by active medical practicing professionals. The same questions crop up on many of the same boards. Some questions not being answered and are true ” calls for help ” from patients contemplating and dealing with mental health issues. Nor should these type of questions be delegated and answered by other patients. BBs are for ” Sharing ” of information. If you plan on running a BB- ensure that you have a medical disclaimer in a very visible place; ensure proper moderation with the help of healthcare volunteer. And Recognize your Liability risks.