Word Seeds

This review was written for LibraryThing Early Reviewers.

Living Well with Dystonia
A Patient Guide
By Daniel Truong, MD, Mayank Pathak, MD, Karen Frei, MD
2010 Demos Medical Publishing

Review by Debra Louise Scott

The most important question regarding any medical related book is, ‘Does it help patients, and those who care for their welfare, understand what is happening and give them resources for coping, treatment, if any, and rehabilitation, if possible. The quick answer for this Patient Guide is ‘Yes’. There are significant nuances in this relatively rare condition that are described from the barely noticeable and often misdiagnosed mild symptoms to the remarkable and spectacularly extraordinary manifestations of a full attack and the discussion about possible genetic connections is very interesting. Various treatments are discussed with their relative effectiveness or lack thereof. A full eight pages are dedicated to helpful resources, and the book provides both an index and a glossary of medical terms pertinent to this condition. There are also patient stories of the various journeys they went through. Most went through numerous doctors and misdiagnoses before finding one that recognized the peculiar anomalies that differentiated to Dystonia

That said, it is painfully obvious that this was written by three different people, only one of whom seems to have any ability to write for the lay person. Some of the entries read like a dry clinic brochure. The writing styles seem to have been meshed together with minimal editing. This becomes especially annoying when one doctor inserts a section into another doctor’s work, leaving the reader as confused and disconnected as their disorder does.

The illustrations of how nerves connect from the brain to the body are disturbingly reminiscent of late night teenage cartoons. There’s a disembodied brain on a spike that has an arm, a disembodied brain, with spike, that has an arm AND a thumb (no, the thumb is not attached to the arm, but floats above it, somewhere where maybe an ear should be) , and a cross section of a brain with, I don’t know, macaroni floating in it. Yes, I know what they are SUPPOSED to represent, but I found these drawings decidedly creepy. To be fair, there are many other illustrations that were very helpful.

Although the book starts out sounding like “Chicken Soup for the Dystonic Soul”, make it past the mushy stuff and settle in for a fairly detailed, if uneven, description of the various manifestations of this neurological movement disorder. (  )