A Family Disease

A Memoir of Multigenerational Ataxia

Dana Lorene Creighton (Autor)

Buch | Softcover

202 Seiten

2021
McFarland & Co Inc (Verlag)
978-1-4766-8318-8 (ISBN)

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Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, this book highlights the gap between the experience of debilitating ailment and the impersonal aims of clinicians, and shows how the stories parents tell themselves about living with a genetic disorder influence how they communicate it to their children.

Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate.

Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma.

Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.

Dana Lorene Creighton has an MS in exercise physiology and spent her career involved in clinical research and community health. She has contributed to various publications in scientific journals and lives in Durham, North Carolina.

Table of Contents

Acknowledgments

Foreword by John F. Evans

Preface

Introduction

I. What Comes Next

The Family Secret

Mindfulness

Small Town

Hornet, Tiger

Hoosier, Rocket

Time Machine

Just Fake It

II. Clinging to Hope

Subtle Inconsistency

Misdirection

Conflict of Interest

Within Normal Limits

Wildflowers

III. Wrestle with Despair

Carolina on My Mind

The James Joyce Pub

Heads or Tails

Ongoing Injury

A Child’s Hope

IV. A Complex Machine

There’s No I in Team

Fuel to the Fire

March Madness

Transformation

So Much, So Fast

The Ataxian

V. No Longer Asking Why

Empowered

Stop Fighting

Adjusting the Focus

Cheers

Sheer Fantasy

Seeds of Fear

Frankenstein

Human Spirit

Write to Heal

VI. Love Is the Law

The Power of Your Mind

Losing My Religion

Bridging the Gap

Connections

Triple Threat

Narrative Medicine

Using Our Words

Appendix A: Correspondence Regarding

the Family Disease

Appendix B: Documents Requested and Received from Indiana University

School of Medicine–Indianapolis

in 1999

Bibliography

Index

Erscheinungsdatum	29.01.2021
Zusatzinfo	34 photos, appendices, bibliography, index
Verlagsort	Jefferson, NC
Sprache	englisch
Maße	152 x 229 mm
Gewicht	272 g
Themenwelt	Sachbuch/Ratgeber ► Gesundheit / Leben / Psychologie ► Krankheiten / Heilverfahren
	Medizin / Pharmazie ► Medizinische Fachgebiete
	Sozialwissenschaften ► Soziologie ► Mikrosoziologie
ISBN-10	1-4766-8318-2 / 1476683182
ISBN-13	978-1-4766-8318-8 / 9781476683188
Zustand	Neuware