Living Well with Dystonia
Living Well With Dystonia is the culmination of decades of treating patients with dystonia, of listening to their long and sometimes frustrating journeys to diagnosis and treatment, of hearing about its effects on their lives, and of recognizing that very little information was available for those who wanted to educate themselves about their illness. The last point was particularly troubling, because we know that when patients with chronic illnesses educate themselves and play an active role in their treatment, they do better. In addition, we know that patient perseverance goes a long way toward getting the correct diagnosis and treatment, since dystonia is relatively rare and even some general neurologists are not well-versed in this disorder.
Living Well With Dystonia was written to provide an easy-to-understand primer about the medical aspects of different dystonias, including anatomy, physiology, diagnosis, progression, and treatment. Medical terms and concepts are introduced sequentially and used as building blocks for later discussion. The book also includes compelling and inspiring first-person accounts from patients with dystonias, many of whom have found ways to have rich and fulfilling lives in spite of their symptoms. These accounts are especially helpful in illustrating to doctors and patients that everyone experiences symptoms differently, and treatment has to be individualized. In addition, it sends a clear message to patients and their loved ones that they are not alone – there are numerous resources that can provide support. As you will see from the patient stories, most patients with dystonia eventually find out that they are stronger and more resilient than they thought.
The Spasmodic Torticollis Handbook: A Guide to Treatment and Rehabilitation
by Mayank Pathak, MD, Karen Frei, MD, and Daniel Truong, MD
A book about ST written for patients. The book is a complete resource about ST and its treatment.
Dedicated to Nancy Muller, an NSTA member and support group leader and the patient of the authors, the book begins with an introduction describing ST. It includes a chapter by Nancy about coping and life with ST. The third chapter contains detailed sketches of the muscles of the neck that can be involved in ST. Hidden at the end of Chapter 3 is an all too brief description of how ST causes pain; it’s nice to find a detailed discussion of pain management later, in Chapter 8. Other chapters discuss how ST is diagnosed and treated. And finally, Chapter 9 includes almost 20 pages of exercises ST patients can do at home with diagrams to help understand exactly how to do them.
Dr. Pathak was one of the creators of our NSTA physical therapy video, and has been so good as to present the exercises in the Spasmodic Torticollis Handbook in approximately the same order as they appear in the tape. Thus, not only does the Handbook present detailed, information about ST all in one source, it also can be an invaluable aide to be used in conjunction with the PT tape. The sketches and descriptions in the Handbook make it possible to do the exercises without the video, but should you have difficulty following from the book, the model in the video may clarify the exact positions for some of the exercises. Certainly, if you are buying the PT video (available on VHS or DVD), the handbook would be a far better supplement than the printer materials we are currently able to provide.
– Member Price: $20.00, includes shipping. ($25.00 for non members)