The Official Patient's Sourcebook On Locked-in Syndrome: A Revised And Updated Directory For The Internet Age

This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to locked-in syndrome (also Cerebromedullospinal Disconnection; De-Efferented State; Pseudocoma), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on locked-in syndrome. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. Overview......Page 9 Scope......Page 11 Moving Forward......Page 12 PART I: THE ESSENTIALS......Page 15 Overview......Page 17 What Is Locked-In Syndrome?......Page 18 Selected References......Page 19 More Guideline Sources......Page 20 Vocabulary Builder......Page 22 Finding Associations......Page 23 Finding Doctors......Page 25 Finding a Neurologist......Page 26 Working with Your Doctor......Page 27 Vocabulary Builder......Page 29 PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL......Page 31 The Combined Health Information Database......Page 33 Federally Funded Research on Locked-In Syndrome......Page 34 The National Library of Medicine: PubMed......Page 35 Vocabulary Builder......Page 54 NIH Guidelines......Page 55 NIH Databases......Page 56 Other Commercial Databases......Page 60 PART III. APPENDICES......Page 61 What Is CAM?......Page 63 What Are the Domains of Alternative Medicine?......Page 64 Can Alternatives Affect My Treatment?......Page 67 Additional Web Resources......Page 72 General References......Page 73 Vocabulary Builder......Page 74 Food and Nutrition: General Principles......Page 75 Finding Studies on Locked-In Syndrome......Page 80 Federal Resources on Nutrition......Page 81 Vocabulary Builder......Page 82 Preparation......Page 85 Medical Libraries in the U.S. and Canada......Page 86 Your Rights as a Patient......Page 93 Patient Responsibilities......Page 97 Choosing an Insurance Plan......Page 98 Medicare and Medicaid......Page 100 NORD's Medication Assistance Programs......Page 103 Additional Resources......Page 104 ONLINE GLOSSARIES......Page 105 Online Dictionary Directories......Page 106 LOCKED-IN SYNDROME GLOSSARY......Page 107 General Dictionaries and Glossaries......Page 109 INDEX......Page 111 Title from ebook title screen (viewed August 28, 2004).