What the Experts Say
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1 Essential Tremor: What the Experts Say Collected Articles and Guidance Third Edition International Essential Tremor Foundation PO Box 14005, Lenexa, KS 66285-4005 888-387-3667 | 913-341-3880 (local) www.EssentialTremor.org |TremorTalk.org (blog) Facebook.com/InternationalEssentialTremorFoundation |Twitter.com/EssentialTremor Search “International Essential Tremor Foundation on YouTube and Google+ ©2014 IETF 2 Preface The International Essential Tremor Foundation (IETF) is pleased to publish this collection of informative articles about essential tremor (ET) written by some of the world’s finest movement disorders specialists and experts in related health care fields. Now in its third edition, this comprehensive book is an invaluable resource to assist with understanding essential tremor. We are confident that this collection will help to enrich your life by offering you educational material that can be referenced again and again. The IETF thanks the many physicians, health care providers, and other individuals that contributed time and effort to make these articles possible. These people have contributed greatly to the success of the IETF over the years. 3 About The International Essential Tremor Foundation (IETF) Founded in 1988 as a 501(c) (3) non-profit organization, the IETF is guided by an executive board of directors, a medical advisory board and an executive director with a staff of three. The organization's membership consists of patients, physicians, educators, health care workers, parents, relatives, friends and volunteers. Our Mission The IETF funds research to find the cause of essential tremor (ET) that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET. IETF Board of Directors Kelly Lyons, Ph.D., President Peter LeWitt, M.D., Vice President Russ Rosen, M.S.W., Secretary/Treasurer Edward M. Block, Ph.D., Secretary Shari Finsilver, Past President IETF Medical Advisory Board Mark Hallett, M.D., Chair Julian Benito-Leon, M.D., Ph.D.; Kelvin Chou, M.D.; Arif Dalvi, M.D.; Leon S. Dure, IV, M.D.; Rodger Elble, M.D., Ph.D.; W. Jeffrey Elias, M.D.; Leslie J. Findley, T.D., M.D., F.R.C.P.(C); Cole Giller, M.D.; Adrian Handforth, M.D.; Dietrich Haubenberger, M.D.; Peter Hedera, M.D.; Arif Dawood Herekar, M.D.; Joseph Jankovic, M.D.; Michael M. Johns III, M.D.; Amos D. Korczyn, M.D., M.Sc.; Anthony E. Lang, M.D., F.R.C.P.(C); Peter LeWitt, M.D.; Elan D. Louis, M.D.., M.Sc.; Fatta Nahab, M.D.; William Ondo, M.D.; Jill L. Ostrem, M.D.; Alexander Rajput, M.D., F.R.C.P.(C); Ali H. Rajput, M.D., F.R.C.P.(C); Arshia Sadreddin, M.D.; Sara Salles, D.O.; Ludy Shih, M.D.; Holly Shill, M.D.; Mark Stacy, M.D.; Claudia Testa M.D., Ph.D.; Jay Van Gerpen, M.D.; Theresa Zesiewicz, M.D., F.A.A.N. IETF Executive Director Catherine S. Rice, M.N.M 4 Table of Contents Glossary of Common ET Terms ............................................................................................... 8 Glossary of ET Terms ........................................................................................................................................................................ 9 What Is Essential Tremor? ...................................................................................................... 14 The History of Tremor .................................................................................................................................................................... 15 Toward a Definition of ET ............................................................................................................................................................. 17 The Natural History of ET .............................................................................................................................................................. 20 The Pathology of ET ........................................................................................................................................................................ 21 ET Fact Sheet .................................................................................................................................................................................... 22 Types of Tremor ............................................................................................................................................................................... 23 Who Gets Essential Tremor? ................................................................................................... 25 Genetic Concepts and ET ............................................................................................................................................................... 26 Genetics of ET .................................................................................................................................................................................. 28 Epidemiology of ET: An Update ................................................................................................................................................... 29 Prevalence of ET ............................................................................................................................................................................... 32 Gender Differences in Tremor ....................................................................................................................................................... 34 Can a Child Have ET? ...................................................................................................................................................................... 35 Getting the Diagnosis .............................................................................................................. 36 Tremor Analysis ................................................................................................................................................................................ 37 Examination of the Patient with Tremor...................................................................................................................................... 39 Methods of Assessing Tremor in Clinical Trials and in Everyday Clinical Practice ............................................................. 40 Is Everything that Trembles Parkinson’s Disease? ..................................................................................................................... 42 ET vs Parkinson’s disease: How do they differ? ......................................................................................................................... 45 Misdiagnosis and its Ramifications ................................................................................................................................................ 47 Three Steps to Choosing a Doctor ................................................................................................................................................ 48 Second Opinions: Knowing Your Rights and Options ............................................................................................................. 49 Life with Essential Tremor ...................................................................................................... 51 Addressing the Psychological Aspects of Essential Tremor ET’s Impact on Emotional and Mental Processes ............ 52 Psychosocial Aspects of Tremor .................................................................................................................................................... 54 Emotional Aspects of ET ................................................................................................................................................................ 55 ET, Depression, and Anxiety .......................................................................................................................................................... 57 Tremor and Stress ............................................................................................................................................................................. 58 Stress and ET ..................................................................................................................................................................................... 59 Functional Disability with ET ......................................................................................................................................................... 60 ET and Aging ..................................................................................................................................................................................... 61 5 ET and Pregnancy ............................................................................................................................................................................. 62 Treatment Options .................................................................................................................. 64 Medications Commonly Prescribed for ET ................................................................................................................................. 65 Topiramate and ET........................................................................................................................................................................... 67 Adverse