Library
Your Stories of Hope
Read the stories, experiences , struggles and accomplishments of others with various forms of dystonia on this webpage.
Links
Take a look at our links page.
Find A Top Team
We’ve provided top team recommendations for DBS, Selective Denervation, Social Work, Mental Health Professionals, Botulinum Toxin Reimbursement, Pain Specialists, Dieticians, Pharmacists, Occupational Therapists, Physical Therapists, and Movement Disorder Specialists. Find out more by clicking here!
Find A Center
Use this map to find a center near you and other important and valuable members you should have allocated to your healthcare team, such that all your social, physical, spiritual, and emotional needs are addressed during provision of medical care for dystonia.
Books
From WeMove: Glossary of Terms Related to Movement Disorders
Books about Living with Dystonia
The following books are written by people living with or having experienced dystonia in some way. They all are available online at Barnes and Noble or at Amazon. Happy Reading!
I’m Moving Two: A Poetic Journey with Dystonia
Beka Serdans, RN (2000)
I’m Moving on . . . Are U?
Beka Serdans, RN (2002)
Personal Accounts about living with Dystonia 24/7 by our Founder. Initial version released to the Dystonia Medical Research Foundation in 1998 as “Dystonia is…” (Click here to read a review.) Online Excerpts are now available for reading on our Moving Series.
The God Squad: A Remarkable True Story
Paddy Doyle (1988, released 2005)
“[This] is an extremely well written book that took me through the whole range of human emotion. I laughed, cried, was angry and happy as the author led me through his life from 4 1/2 years old through the epilogue. It is a book that I could not cast aside to finish later…..the 236 pages were rapidly devoured in a few hours.” ~ Amazon Review
Dystonia: A Medical Dictionary, Bibliography, and
Annotated Research Guide to Internet References
ICON Health Publications (2004)
Learning, Coping, Living: A Woman Who
Describes Her Life Living Successfully with Dystonia
Bette Levine (2004)
Surviving Dystonia
Carmine L. Petrangelo, Susan Kelly (Editor),
HarperCollins Staff (Illustrator), Linsay Poulin (Illustrator) (2004)
Dystonia: The Disease That Distorts
Eugene Smith
101 Simple Suggestions And Quotations
To Express Compassion And Empathy:
An Aid In Healing Ourselves And The World
Linda M. Furiate (2005)
“When we came into this life, we were never promised a length of time, only the ability to decide our day to day living.”
Spasmodic Dysphonia: The Unspoken Voice Disorder
Tom Johnson
Speechless: Living with Spasmodic Dysphonia
Dot Sowerby, Jean Newcomer, Michael Rolnick, Michael Rontal, French O’Shields
Essential Tremors: Poetry…trials with smiles
Elsie Doll
Lucky Man: A Memoir
Michael J. Fox (2004)
Additional hard-to-find Books can be found on AbeBooks.
Dystonia Ass. of Australia (Site only )
European Dystonia Federation
The Dystonia Society
ADDER ( UK-based )
Austria Dystonia Society
Dystonia DMRF Canada
Denmark Dystonia Society
Netherlands Dystonia Group
Dystonia German Society
The Dystonia Society of Ireland
Dystonia Society Norway
Dystonia Society of Sweden
Dystonia Group of South Africa
Dystonia Group of Italy
- Watch our Flash Film online !
- Complete our ” Are U at Risk ? ” Tool
To learn about the tax exemption status of each non-profit group, visit either Charity Navigator or GuideStar. Currently Care4Dystonia is the only US based dystonia-oriented nonprofit with HON Code Status !