Customer Reviews

The Official Patient's Sourcebook on Guillain-Barrč Syndrome: A Revised and Updated Directory for the Internet Age

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Most of the reading population for GBS is limited to people like myself: those who've been struck with this rare disease and are searching for as much information as possible. By now you've all read "Bed Number Ten" and Joseph Heller's "No Laughing Matter" and, if you're wise, the best one out there which is Gareth Parry and Joel Steinberg's "Guillain-Barre syndrome" published by the American Neurological Association. Theirs is the book to buy and study, not this one. If you're like me and suffered through the disease and are now waiting patiently, as promised, for your life to return to normal, you're looking for answers. This particular book-even with it's interactive CDROM accompaniment offers no more than the typical thorough internet research you've already found. As far as the personal account books go, you've lived through that and though Susan Baier will help you to connect and feel less alone, even she begins to whine about "neglect" from medical staff-a common theme by the non-professional writers-because there is nothing that these medical professionals can do to make you feel better. You're going to have to survive the coma, the hallucinations, the paralysis, the inability to breath on your own and then the painstaking work to regain the use of your body. Then, for an untold amount of years you will learn to live with the excrutiating pain and, worse in my opinion, what is laughably referred to as "fatigue." Yes, a large number of GBS patients return to their normal activities from prior to GBS, but not me-not yet, and I'm nearly three years out now. No one speaks about how you FEEL while you're back to your old life. But something will always be different. This book and CD offer nothing more than you've already read. I promise you.