ADULTS WITH TOURETTE SYNDROME Público
Finkelstein, Shlomit Ritz (2009)
Abstract
Adults with Tourette Syndrome
By Shlomit Ritz Finkelstein
The neuropsychiatric disorder Tourette syndrome (TS) is characterized by motor and vocal involuntary stereotypical tics. Its adult population (ATS) is little studied and often excluded from research. Only little medical help is available for ATS and many of them have limited access to health care due to lack of health insurance or inability to drive to a clinic.
ATS is the focus of this study. Its phenotypic presentation is heterogeneous with no reliable phenotype that serves as a basis for research. Instead there is a phenotype spectrum that may or may not include obsessive compulsive disorder (OCD), attention disorders like attention deficit disorder (ADD) and attention deficit hyperactivity disorder (ADHD), and more.
This study of ATS is interdisciplinary, drawing on the history of medicine, cognitive psychology, and neuroscience. The historical dynamics of the elusive TS include changes in its definitions and treatments from the 19th century of Gilles de la Tourette to the present. The dissertation is contextualized within this historical dynamics and aims to contribute to it.
In this qualitative study, data are gathered from video-interviews with sixteen adults with TS, video-interviews with their relatives, self reports, and medical evaluations. Based on these data, tics are classified in three ways: by modality, complexity, and triggers. A close study of coprolalia -- involuntary cursing afflicting some with TS -- is performed as well, with attention to the contribution of culture to this phenomenon and the possibilities and hindrances to its amelioration. The psychological, neurochemical, and neurosurgical interventions administered to the participants are studied and reflected upon.
This study suggests three major areas for closer and quantitative future investigation: (i) the role of the visual system in TS; (ii) the role of the somatosensory system in TS; and (iii) the possible application of mindfulness to the treatment of TS.
Table of Contents
TABLE OF CONTENTS
Preface viii 1. Introduction 1 2. Tourette's - a syndrome not a disease: Historical background 7 3. Tourette's - a syndrome not a disease: The current state of affairs 27 4. Methodologies 73 5. The participants, in their own words 89 6. Tic classification: Observable behaviors 165 7. Tic classification: Triggers of behavior 190 8. Symbolic tics 223 9. Interventions 262 10. Future directions 290 Acknowledgements 297 Appendices 301 I. Tic severity self report (TSSR) II. Yale- Brown Obsessive-Compulsive Scale (Y-BOCS): Self evaluation III. Yale Global Tic Severity Scale (YGTSS): physician evaluation IV. Yale-Brown Obsessive-Compulsive Scale (Y-BOCS): physician evaluation V. Interview of a participant with coprolalia VI. Interview of a relative of a participant with coprolalia VII. Interview of a participant without coprolalia VIII. Interview of a relative of a participant without coprolalia IX. Interview of a participant after deep brain stimulation (DBS) X. Interview of a relative of a participant after deep brain stimulation (DBS) Bibliography 333 Index of tables 351 Index of figures 352
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