ADULTS WITH TOURETTE SYNDROME Open Access

Finkelstein, Shlomit Ritz (2009)

Permanent URL: https://etd.library.emory.edu/concern/etds/f1881m33w?locale=en
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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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