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Comprehensive information for patients with dystonia and the people close to them. You can live well with dystonia. This empowering and encouraging resource and tool, written for both individuals with chronic condition and their families, provides an overview of a variety of dystonias, (including cervical dystonia, spasmodic dysphonia, and writerís cramp) and the breadth of treatment options available, as well as practical advice for improving quality of life. Written by three acclaimed neurologists, Living Well with Dystonia will help you: Understand your specific dystonia and how it progresses Determine the best treatment approaches Alleviate symptoms with rehabilitation exercises Address the ìhidden symptomsî such as social embarrassment
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. According to the Dystonia Medical Foundation, estimates suggest that no less than 300,000 people in North America are coping with some form of dystonia. Living We
Diagnosis Dystonia takes you on a personal and educational journey full of valuable information for those newly diagnosed, as well as those who have been living with dystonia for years. Tom's perspective as a long time dystonia patient is invaluable, offering coping skills, healthy living strategies, and treatment options. He also provides practical information for emotionally adjusting to the diagnosis and subsequent lifestyle changes, and how to live in the world with something "different." Testimonials from other patients provide additional perspective. Having suffered for many years and not wanting the same for others, Tom compiled a ton of strategies for dealing with all that dystonia brings, such as pain, anger, fear, depression, anxiety, stress, grief, relationships, shame, as well as healthy lifestyle strategies, pain management, how to learn to accept and rebuild, dealing with the public and how to talk about dystonia, treatments, tips for dealing with the diagnosis and life changes down the road, what to expect at your doctor appointments, medications, the work environment, the disability process, tips and tricks for doing daily activities with more ease, and a ton of patient testimonials. Diagnosis Dystonia is a must read for patients, family, friends, caregivers, health care providers, researchers, and anyone who knows someone living with dystonia or other chronic health condition. Readers will benefit from the knowledge, wisdom, and experience Tom has gained through first learning to cope with dystonia and then improving upon the life he leads. This book will help others find their own path in pursuing life in which dystonia is not the focus, but a catalyst for finding better days. Tom now uses his experience and education as a certified professional life coach to help people with dystonia and other life challenges. From the Author: Why this book? There are not many books available on dystonia and most that are available were written by people who do not have dystonia. I felt there was a great need for a book from the perspective of patients, as our experiences are uniquely different than those who never walked a day in our shoes. This book provides readers with a wide window into life with dystonia through the eyes of those who live with this challenging condition. It is arguably the most comprehensive book currently available on dystonia, covering numerous issues we face on a daily basis and providing countless strategies for overcoming obstacles and living a productive life. My goal is to provide you with as much information possible to make your life with dystonia easier. This book need not be read from cover to cover. It is formatted so the reader can jump to chapters and topics of relevance and interest. Although this book centers on dystonia, much of the information can be applied to any health condition or other life challenge. It provides useful strategies and tools for any life circumstance. Sign up for a free newsletter at www.tomseamancoaching.com
A patient-oriented guide to living life to your fullest with dystonia. Dystonia doesn’t have to rule your life. This empowering and encouraging resource, written for dystonia patients and their families and caregivers, provides an overview of a variety of dystonias including cervical dystonia, spasmodic dysphonia, blepharospasm, and writer’s cramp, and the breadth of treatment options available. The authors also offer practical advice for improving quality of life and managing pain and other symptoms. This updated second edition includes expanded discussions of new medications, chemodenervation with botulinum toxin, deep brain stimulation, genetic breakthroughs, and other areas. Written by three acclaimed neurologists with perspectives from patients that illuminate and inform, Living Well with Dystonia will help you: Understand your specific dystonia and how it progresses Determine the best treatment approaches Alleviate symptoms with rehabilitation exercises Address the “hidden symptoms,” such as social embarrassment Blurbs : "Living Well with Dystonia provides a balanced and easily understandable introduction to a chronic condition that is rarely discussed. Treatments and exercises are presented honestly - no miracle cures, but paths toward symptom relief. Simple diagrams of the nervous system and affected limbs or muscles are very helpful, and comments from actual patients personalize the discussions throughout. Well written. Recommended." - CAPHIS Consumer Connections "This kind of comprehensive guide to dystonia has long been needed. It will be an invaluable resource to patients, their families and caregivers."-Bonnie Strauss, President and Founder, The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. "Dr. Daniel Truong and co-authors have done a great service to patients with blepharospasm and other forms of dystonia by providing a clear and readable discussion of the disorders, their causes and therapeutic alternatives. Ignorance enhances fear and disability, whereas knowledge allows patients and their families to optimally adjust to chronic conditions, thereby improving their quality of life. This book should be read by all dystonia suffers and their loved ones."-Mary Lou Koster Thompson, President, Benign Essential Blepharospasm Research Foundation
Spasmodic torticollis, also known as cervical dystonia, affects about three people in 10,000, or an estimated 85,000 individuals in the United States alone. Despite this, there has been until now a lack of information outside of the professional medical literature for use by individuals with this disorder and their families. This book provides comprehensive information on the disorder for people with spasmodic torticollis and those close to them. Medical terms and concepts are introduced sequentially and then used as building blocks for the later discussion. Beginning with a clear definition of the disorder, opening chapters categorize this neurologic disease as one of the broader category of movement disorders, and differentiate it from other conditions with which it is often confused. The authors then present a stepwise introduction to the relevant anatomy and physiology of the nervous system and neck. They draw on the experiences of their patients to build a progressive depiction of the experiences an individual might have as he or she goes through the initial onset of symptoms, progression of the disorder, seeking medical care, diagnosis, treatment, and subsequent outcome. Personal vignettes from the experiences of selected patients are provided where they illustrate particular points in the discussion. Subsequent chapters discuss various modes of treatment for spasmodic torticollis. Prior to the mid-1980?s, there were no specific treatments for this disorder. Nearly all treatment consisted of using oral medications that were primarily intended for other medical conditions. Since most of these medications are still in use, and a few new ones have been added, a chapter is devoted to detailing them and discussing the general principles of medication therapy. During the past decade, chemodenervation using botulinum toxin has become the primary and most effective treatment for spasmodic torticollis. For those few patients who require surgery, a description is provided of the neurosurgical techniques developed during the last twenty years specifically for its treatment. The final chapter is a manual of therapeutic rehabilitation exercises designed to alleviate the symptoms of spasmodic torticollis. These exercises can be performed by most patients with no assistance and a bare minimum of equipment. Since each person?s case of spasmodic torticollis is different, only certain of the exercises may be appropriate for any given individual. They should be undertaken only after discussion with your physician. These exercises are accompanied by detailed illustrations that emphasize the particular muscles relevant to each posture or movement. About the Authors: Dr. Pathak is a neurologist with a special interest in the neurologic rehabilitation of movement disorders, especially spasmodic torticollis. Dr. Frei is a neurologist specialized in the field of neurogenetics, and has conducted clinical trials on a number of movement disorders, including spasmodic torticollis. Dr. Truong is a neurologist and movement disorders specialist. He has conducted active research in the management of movement disorders, including spasmodic torticollus. He was one of the pioneers in the use of botulinum toxin to manage this condition, and has lectured worldwide on the management of movement disorders.
How would you like to be unable to speak intelligibly? How would you enjoy having an awkward gait that makes you prone to falling and causes people to stare? Living with dystonia is not something I would have chosen for myself. You can live a fulfilling life full of happiness, blessings, and contentment. This is how it can be done.
Provides a broad overview of current rehabilitation approaches, emphasizing the need for interdisciplinary management and focussing on deliverable outcomes.
The field of movement disorders is relatively broad, encompassing disorders of increased movement, such as tremors, dystonia, and tics, to disorders characterized by a paucity of movement, such as Parkinson's disease. Our understanding of the pathogenic mechanisms and our treatment options are expanding at a rapid pace. This expansion ranges from the medical and surgical advances in treating Parkinson's disease to the flood of genetic abnormalities that have now been found to cause various movement disorders. Although many patients are seen by the movement disorders specialist in neurology clinics around the country, most of these patients receive their followup care from a primary care physician or "general" neurologist who must be versed in the character istics and treatment plans of this diverse group of disorders. The major goal of Parkinson's Disease and Movement Disorders: Diagnosis and Treatment Guidelines for the Practicing Physician is to distill this immense amount of information and to educate the practitioner about the many facets of the movement disorders field. We believe that this book fills a large void, since most texts on movement disorders are more detailed and geared toward the specialist. We have asked the chapter authors to emphasize the clinical characteristics of each disorder, discuss the differential diagnosis and the diagnostic testing, and then outline the various treatment options, as if they were teaching during a preceptorship in their clinic.
In the United States, an estimated 42 million people suffer from some form of movement disorder. Common movement disorders include Parkinson's disease (PD), essential tremor (ET), and dystonia. Although medications may be helpful for these conditions, in many patients, symptoms cannot be controlled with medications alone. In such situations, their physicians may recommend a surgical procedure known as Deep Brain Stimulation (DBS). DBS is a revolutionary technology using an implanted device to deliver electrical stimulation to the brain to help symptoms, alleviate suffering, and improve quality of life. The Food and Drug Administration (FDA) approved DBS as a treatment for essential tremor in 1997, for Parkinson's disease in 2002, and dystonia in 2003. Deep brain stimulation has dramatically changed the lives of many patients with uncontrollable tremors. Patients often can resume normal activities, such as feeding and dressing themselves, and can have active and fulfilling lives. The need for anti-tremor medications is often reduced or eliminated. Though it's no longer considered experimental, DBS is, for now, still used as a second- or third-line treatment, reserved for patients with more advanced cases of the disease and those for whom medication alone is inadequate or can't be adjusted precisely enough to keep their tremors and writhing under control. However the idea of this surgery being a "last resort" is an evolving concept. Ten years ago doctors were operating on only the most severe, disabled, wheelchair-dependent patients, now they are operating on patients with moderate-to-severe cases of PD, ET and Dystonia. The thought is that this trend will continue. Instead of saying "wait another five to ten years until you become more disabled" doctors are realizing that the earlier they use DBS, the more they can improve the quality of life of their patients.
Movement Disorder Emergencies: Diagnosis and Treatment provides a fresh and unique approach to what is already a high-profile subspecialty area in clinical neurology. The disorders covered in this volume are standard fare in the field but emphasize the urgencies and emergencies that can occur. One of the very attractive features of the field of movement disorders is that diagnosis is often based on unique visible and sometimes audible phenomenological symptoms and signs. Therefore, in this era of highly sophisticated laboratory and radiological diagnostic tools, the diagnosis of many movement disorders is still largely made in the clinic where pattern recognition is key. Crucial to astute clinical diagnosis is broad clinical experience. In short, you have to have seen one to recognize one! Patients with movement disorders nearly always present as outpatients but, as aptly recognized by Drs. Frucht and Fahn, this may include acute manifestations leading to emergency presentations, often in an emergency room setting, where they are very likely to be unrecognized and therefore poorly managed. The authors define an “emergency” movement disorder as one in which failure to promptly diagnose and treat may result in significant morbidity or mortality. However, they also stress the importance of certain “can’t miss” diagnoses such as Wilson’s disease, dopa-responsive dystonia, and Whipple’s disease in which delayed diagnosis in less emergent situations can lead to slowly evolving and often irreversible neurological damage with tragic consequences.