Table Of ContentA TATTOO ON MY BRAIN
Dr Daniel Gibbs is one of 50 million people worldwide with
an Alzheimer’s disease diagnosis. Unlike most patients
with Alzheimer’s, however, Dr Gibbs worked as a neurolo-
gist for twenty-five years, caring for patients with the very
disease now affecting him. Also unusual is that Dr Gibbs
had begun to suspect he had Alzheimer’s several years
before any official diagnosis could be made. Forewarned
by genetic testing showing he carried alleles that increased
the risk of developing the disease, he noticed symptoms
of mild cognitive impairment long before any tests would
have alerted him. In this highly personal account, Dr Gibbs
documents the effect his diagnosis has had on his life and
explains his advocacy for improving early recognition of
Alzheimer’s. Weaving clinical knowledge from decades
caring for dementia patients with his personal experience
of the disease, this is an optimistic tale of one man’s jour-
ney with early-stage Alzheimer’s disease.
Daniel Gibbs is a retired neurologist in Portland, Ore-
gon with early-stage Alzheimer’s disease. Having spent
twenty-five years caring for patients, many with dementia
themselves, he is now an active advocate for the early rec-
ognition and management of Alzheimer’s.
Teresa H. Barker is journalist and nonfiction book cowriter
whose collaborations include strong narrative treatments
of subjects including medical science, creative aging, child
and adult development, parenting and life in the digi-
tal age.
“The patient perspective in Alzheimer’s is often sorely missing from
international dialogue and debate about this demon disease. Dr. Daniel
Gibbs, whom I am honored to call a friend in this journey, has connected
the serpentine dots between the patient and the medical profession in
his brilliant work, A Tattoo on my Brain. As a retired neurologist and now
a patient, Dr. Gibbs writes with great passion, knowledge and persever-
ance. His resolve reminds me of William Ernest Henley’s poem Invictus:
‘My head is bloody, but unbowed.’ A Tattoo on My Brain is a must read for
the world.”
Greg O’Brien, author of On Pluto: Inside the Mind of Alzheimer’s
“As a neurologist with early-stage Alzheimer’s, Dr. Daniel Gibbs offers
a uniquely insightful, candid, and compassionate view from both seats.
A Tattoo on My Brain is essential reading for any family living with an
Alzheimer’s diagnosis.”
Lisa Genova, New York Times bestselling author of Still Alice and Remember:
The Science of Memory and the Art of Forgetting
“When a neurologist experiences a so-called neurodegenerative condi-
tion such as Alzheimer’s or Parkinson disease they are often equipped
uniquely to provide insight into a condition that non-medically qualified
patients may lack. In this unique work, A Tattoo on My Brain, Dr. Gibbs
tracks in meticulous detail the earliest symptoms of what was diagnosed
subsequently as Alzheimer’s disease. Interestingly, the apparent prodro-
mal symptom was smell impairment appearing some 10 years before
diagnosis of AD although that could have related in part to a coinciden-
tal pituitary adenoma. Either way, smell loss is now a well-recognised
feature of AD and in Dr. Gibbs’ case, the insidious decline of smell appre-
ciation is evaluated by serial measurement on the University of Pennsyl-
vania Smell Identification Test. The possibility of late onset AD did not
come as a complete surprise, given that he was a homozygous carrier
for the APOE-4 allele. Subsequent impairment of declarative memory
with abnormalities on amyloid PET imaging put the diagnosis beyond
reasonable doubt. Dr. Gibbs comments on the role of cholinesterase and
glutamate antagonists and describes his unfortunate experience with
aducanumab, the monoclonal antibody against amyloid. Finally, the
role of lifestyle and dietary changes are discussed as a means to retard
the progress of the disease. This work will have major appeal to lay peo-
ple, especially those caring for an affected family member but also to
neurologists, neuropsychologists and those involved in trials of new
medications.”
Professor Christopher H Hawkes, MD, FRCP, FAAN, Honorary Professor
of Neurology, Barts School of Medicine & Dentistry, Honorary Consultant
Neurologist, Barts Health, Author of Smell and Taste Disorders
“Dr. Gibbs provides a first-hand account of his journey as a neurolo-
gist living with early-stage Alzheimer’s that is thoughtful, educational,
humorous and poignant. I highly recommend this book to patients and
families living with Alzheimer’s, and to doctors and scientists dedicated
to studying the disease and developing new therapies.”
Gil Rabinovici, MD, Professor of Neurology, University of California San Francisco
“A Tattoo on My Brain describes Dr. Daniel Gibbs’ amazing journey from
neurologist to patient living with Alzheimer’s disease. Clues crop up
along the way, a genetic marker for Alzheimer’s, strange odors and
memory glitches that tipped him off that his brain was starting to mal-
function. He underwent advanced brain scans that showed the buildup
of amyloid plaques and he joined a clinical trial to remove them. He viv-
idly describes the side effects that briefly turned his world upside down.
But Dr. Gibbs emerges from this odyssey in good shape, with wisdom
and reflection urging readers to learn about their risk for Alzheimer’s
disease and take steps to prevent it.”
Stephen Salloway, MD, MS, Director of Neurology and the Memory and
Aging Program, Butler Hospital, Providence, Rhode Island, and Martin M.
Zucker Professor of Psychiatry and Human Behavior and Professor of
Neurology, Warren Alpert Medical School of Brown University
“Gibbs ends his sometimes sad but utterly beautifully told journey with
a message of hope. As the understanding about Alzheimer’s disease pro-
gresses, more evidence is gained to prevent it. In the wake of a drug
that will cure this disease, there is now overwhelming evidence that life
style choices (such as exercise, a Mediterranean diet, mentally stimulat-
ing activities, social engagement, and good sleep) might markedly slow
down its progression. In Gibbs’ own words: “I set out to write this book
to normalize [that] conversation so that more people can learn about
[those] possibilities in time to make a difference. I realize now that some
of the lessons I’ve learned along the way speaks to the fear and dread,
as well as the hopes and gifts of life in the moment we have, whatever
we face”.”
Lancet Neurol 2013; 12: 129–30
A Tattoo on My
Brain
A Neurologist’s Personal Battle against
Alzheimer’s Disease
DANIEL GIBBS
Emeritus of Oregon Health and Science University
TERESA H. BARKER
Freelance journalist and author of scientific non-fiction
Shaftesbury Road, Cambridge CB2 8EA, United Kingdom
One Liberty Plaza, 20th Floor, New York, NY 10006, USA
477 Williamstown Road, Port Melbourne, VIC 3207, Australia
314–321, 3rd Floor, Plot 3, Splendor Forum, Jasola District Centre,
New Delhi – 110025, India
103 Penang Road, #05-06/07, Visioncrest Commercial, Singapore 238467
Cambridge University Press is part of Cambridge University Press & Assessment,
a department of the University of Cambridge.
We share the University’s mission to contribute to society through the pursuit of
education, learning and research at the highest international levels of excellence.
www.cambridge.org
Information on this title: www.cambridge.org/9781009325189
DOI: 10.1017/9781009330961
© Daniel Gibbs 2021, 2023
This publication is in copyright. Subject to statutory exception
and to the provisions of relevant collective licensing agreements,
no reproduction of any part may take place without the written
permission of Cambridge University Press & Assessment.
First published 2021
Second edition 2023
Printed in the United Kingdom by TJ Books Limited, Padstow Cornwall
A catalogue record for this publication is available from the British Library.
ISBN 978-1-009-32518-9 Paperback
Cambridge University Press & Assessment has no responsibility for the persistence
or accuracy of URLs for external or third-party internet websites referred to in this
publication and does not guarantee that any content on such websites is, or will
remain, accurate or appropriate.
For all our children and grandchildren, the next generations
around the world,
in the hope and expectation that, with our hard work
and dedication,
Alzheimer’s disease can be beaten
CONTENTS
Acknowledgments page xi
INTRODUCTION 1
PROLOGUE 10
1 BEACON ROCK 12
2 FOREWARNED AND FOREARMED 19
3 THE SMELL OF BAKING BREAD 24
4 SNEAK PREVIEW 29
5 A STUBBORN PUZZLE 34
6 THE LOCKED BOX AND THE FAMILY TREE 39
7 THE MEASURE OF MEMORY 48
8 ORCAS NONETHELESS 55
9 MY BRAIN, MY SELF 60
10 THE REVEAL 69
11 COGNITIVE RESERVE AND RESILIENCY:
BRAIN CELLS IN THE BANK 75
12 MY EXPERIMENTAL LIFE 83
13 WHEN ARIA IS MORE THAN AN
OPERATIC SOLO 91
14 MY EXPERIENTIAL LIFE: LIVING WITH
EARLY-STAGE ALZHEIMER’S DISEASE 102
