Books
Beck, Rev. Mike, “Living in a Body with a Mind of its Own: the emotional journey of dystonia” AuthorHouse LLC 2013
Levine, Bette “Learning, Coping, Living: a woman who describes her life living successfully with dystonia, a neurological disorder” 2002
Lewis, Brenda Currey, “A Twisted Fate: My life with dystonia” Friesen Press, 2013
Parker, James. N. M.D. and Philip M. Parker, Ph.D., editor “The Official Patient’s Sourcebook on Dystonia Disorders”, ICON Health Publications 2002
Petrangelo, Carmine “Surviving Dystonia: The truth about this rare and misunderstood disease”, 2002
Seaman, Tom “Diagnosis Dystonia: Navigating the Journey”, Shadow Panther Press,2015
Serdans, Beka, RN I’m Moving Two: A Poetic Journey with Dystonia:, Xlibris Corporation 2000
Smith, Eugene, “Dystonia: the Disease that Distorts” Peanut Butter Publishing, 1996
Tannenbaum, Cher, “Woman of few words: My Creative Journey with Dystonia” Gefen Publishing House Ltd. 2019
Truong, Daniel MD, Mayank Pathak MD and Karen Frei MD. “Living well with Dystonia: A Patient Guide” Demos Medical Publishing 2016
It is possible to become a member of a foundation or join a support group. Some of them have newsletters.
Websites
American Dystonia Society
American Foundation for Focal Dystonia
American Speec\h, Language Hearing Association
Backmann-Strauss Dystonia & Parkinson Foundation
Benign Essential Blepharospasm Research Foundation
Cure Dystonia Now
Distonia Italy
Down with Dystonia
Dystonia Europe
Dystonia Medical Research Foundation
Dystonia Medical Research Foundation Canada
Dystonia New Zealand
Dystonia Society
European Dystonia Federation
Movement Disorder Society
Movement Disorders Australia
National Spasmodic Dysphonia Association
National Spasmodic Torticollis Association
Spasmodic Toprticollis Dystonia/ST Dystonia
The Kurt & Seydow Dystonia Foundation
Tyler’s Hope for Dystonia Cure, Inc.
It is possible to join a Facebook group
Facebook Groups
20/30 Dystonia Group- A forum for people in their 20s and 30s
Australian Dystonia Support Group
Cervical Dystonia
Cervical Dystonia Support Forum
Cervical Dystonia Talk
Dystonia Awareness
Dystonia Awareness Matters
Dystonia Friends
Dystonia Spouses & Loved Ones
Dystonia Support and Awareness
Dystonia Support Group
Dystonia UK
Generalized Dystonia Support Forum
Neuronauts
Oromandibular, Blepharospasm &P Cranial Dystonia Support Forum
Parenting with Dystonia Support Forum
ST Dystonia
Support4Parents of Children with Dystonia
The European Network for the Study of Dystonia Syndromes
You may like to follow blogs, postings of Twitter accounts or youtube channels made by people with dystonia.
Blogs and Twitter
Dyfying Dystonia
Dystonia Ambassador
Dystonia Living
Dystonia and Me
Dystonia Muse
Lived Experience With Dystonia 