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Diagnosis Dystonia: Navigating the Journey Paperback – March 20, 2015
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I was diagnosed with General Dystonia in September and even though a positive person, I went into a very dark place. I catastrophized my future, imagining that I would end up living alone in a nursing home, unable to take care of myself and unable to have a dog. I just recently moved to the beach (my dream come true) and during my walks I would cripple in fear and begin to cry. It was bad. I would read books on Dystonia and throw them across the room, scared about what I had just read.
My husband and I decided that he would read all material first before giving it to me, weeding out the negative, pessimistic information and only passing along the positive. In my research, I saw reviews and information on Diagnosis Dystonia and had a feeling this book would be different. While away on a trip, the book came to my house and my husband began reading it. When I returned, I asked him about it. He said, "THIS is the book for you. This book will resonate with you.... but don't read chapter two." "Okay, I won't," I said.
I began reading and I knew at once my husband was right. This book, written by a man who has Dystonia himself, is beyond impressive in the scope of information he provides and the attitude in which he writes it. He writes it in a way that allows the reader to skip ahead to any area of information you might be seeking. Maybe you are newly diagnosed and you don't know what Dystonia is exactly. Tom describes it for the layperson to clearly understand. Of course, he delves into the different types of dystonia. Chapter two discusses his personal experience and I took my husband's advice to skip it because I didn't feel it was relevant to my own experience. And since I fall into the Empath category of a typical dystonia patient, I didn't want to take on that pain.
Tom moves on to talk about receiving the diagnosis, and real-life tools in managing stress, coping with living with a chronic condition, nutrition, mental health well-being, working with dystonia, treatment options, eastern medicine options, and tips and tricks for daily living.
ALL the information you need is in Diagnosis Dystonia. Even more important than that though, is how Tom writes it. The book is peppered with engaging and inspirational quotes that I highlighted because they spoke to me. He includes many testimonials in each chapter, reminding us that even though our individual experiences are unique to us, we are not alone. Tom also recommends different books that have helped him overcome some obstacles and he concludes the book with a list of support groups in which to get even more information.
Tom is a man who gets it. He writes that getting diagnosed with dystonia, although a challenge, is also an opportunity for self growth. No, I didn't read chapter two, but I understand that Tom has risen from the depths of despair to not only thrive, but to seek to help others.
Tom, thank you so much for caring enough about others to take the time to write this book. It has completely reframed my outlook of my diagnosis and reframed my every day thinking about living with Dystonia. I no longer fear the future. I would like to add that there is another component to my change of attitude. I now use the meditation apps, Headspace and Calm. So, Tom's book has helped me with my attitude and the apps play a significant role in keeping me in the "now." I highly recommend meditation for those who have a tendency to project fear into the future. The combination of the book and meditation has been a life changer for me.
Tom shares many inspirational ideas. My favorites is: "Instead of running from the storm, it is best to find a way to dance in the rain." I wish you all good luck in this journey-- we ARE in it together.
On the movement disorder side, Tom reveals his own journey with Cervical Dystonia, aka Spasmodic Torticollis, or as I sometimes call it, 'The Mother of Focal Dystonias'.
For someone who has lived with the same for six years and discovered many ways to live with it, this book gives even more helpful strategies and information to improve your quality of life. But for someone newly diagnosed, or in the terrifying early stages, including having no idea what's going on, I'll go a step further and describe it as nothing short of a gold mine.
Tom's knowledge and expertise (and first hand experience) of both the condition itself, as well as the mental illness that comes with it, is also a massive benefit.
Everyone on the planet with Cervical Dystonia, or any other dystonia, or any other chronic illness, both physical or mental, or anyone for that matter who is struggling with life, needs to add this to their arsenal.
Go for it...
Top international reviews
Diagnosing Dystonia. Navigating the journey. Tom seaman.
I've finished reading this book and taken a day to let it all sink in. I had intended to post a recommendation and my thoughts on its benefits and relevance to members of our Dopa Responsive Dystonia group. But I'm sure it will be of great help to many dystonians, their families and health care professionals whatever type of dystonia they have to deal with. The author Tom Seaman has Spasmodic Torticollis, but this book focuses more on the unpredictable journey of misdiagnosis, pain, uncertainty, final diagnosis and the journey through the grieving process, to acceptance of his situation.
This book has helped me to release the past and changed my views and outlook in so many ways. I've come to the conclusion that however bad or ill you may look or feel, you will only make progress to finally letting go of the past and accepting that dystonia is always going to be a part of your life, by learning to take the good out of a bad situation and discard the rest. This way, we only take positive experiences forward and come up against the next obstacle as a stronger person. This is a familliar story which most dystonians can relate to. It is a roller coaster ride of emotions, and also explains the treatments available, including alternative therapies, and the detailed pros and cons of each drug and procedure. I have to thank Tom Seaman for sharing his experiences, insight and knowledge with us all.
I also think every neurologist should read it too.
I may have to start fund raising to buy them all a copy!
A highly recommend book. 5*****.