Navigating Life with Parkinson Disease

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3
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Library of Congress Cataloging-in-Publication Data

Parashos, Sotirios A.
Navigating life with Parkinson disease / Sotirios A. Parashos,
Rose L. Wichmann, Todd Melby.
p. cm.
Includes index.
ISBN 978–0–19–989778–0 (pbk)
1. Parkinson’s disease—Patients. 2. Parkinson’s disease—Patients—
Rehabilitation. 3. Self-care, Health. I. Wichmann, Rose L.
II. Melby, Todd. III. Title.
RC382.P3497 2013
616.8′33—dc23
2012011187

1 3 5 7 9 8 6 4 2
Printed in the United States of America
on acid-free paper

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CONTENTS

About the AAN Neurology Now Patient Book Series | xi

Lisa M. Shulman, MD
Foreword | xv
J. Eric Ahlskog, PhD, MD
Preface | xix

1. Introduction | 1
You Are Not Alone | 6
About This Book and How to Use It | 7

2. What Is It? Why Me? | 10

What Is It? | 11
What Causes Parkinson Disease? | 13
What Are the Stages of the Disease? | 19
Who Gets the Disease? Why Me? | 21
Is There Help? | 27
The Outlook for Parkinson’s Patients | 30

3. The Motor Symptoms | 33

Tremor | 34
Bradykinesia | 36

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vi CONTENTS

Rigidity | 37
Loss of Balance, Freezing, and Falling | 38
Other Motor Symptoms | 41
Motor Symptoms that May Occur as a Complication of
Treatment | 47

4. The Non-Motor Symptoms | 52

Sensory Symptoms | 52
Cognitive Symptoms | 56
Emotional and Psychiatric Symptoms | 59
Sleep | 63
Autonomic Nervous System Dysfunction | 66
Skin Problems | 70

5. Diagnosis | 71
Making and Verifying the Diagnosis | 71
The Role of the Neurologist and the Medical Team | 75
Frequently Asked Questions Regarding Diagnosis and
Assembling a Team of Experts | 78

6. How Will My Life Change? | 85

Reacting to the Diagnosis | 88
Seeking More Information | 89
Frequently Asked Questions about How to Deal with the
Diagnosis of Parkinson Disease | 90
The Next Step | 92

7. Disease Management: General Principles,

Medications, and Surgery | 93
What Are Our Weapons in Treating Parkinson Disease? | 93
What If I Don’t Want to Start Medications Right Away? | 95

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Contents vii

Medications | 96
Brain Surgery for Parkinson Disease | 130

8. Disease Management: Rehabilitation Therapy,

Assistive Devices, and Adaptive Equipment | 142
Physical Therapy | 142
Occupational Therapy | 144
Speech Therapy | 146
Assistive Devices and Adaptive Equipment | 148

9. Disease Management: Specific Symptoms | 166

Managing Tremor, Bradykinesia, and Rigidity | 167
Managing Balance Challenges and Freezing of Gait | 170
Managing Weakness and Fatigue | 173
Managing Dyskinesia, Dystonia, and Wearing Off | 174
Managing Speech and Communication Problems | 174
Managing Excessive Salivation, Drooling, and Thick
Secretions | 175
Managing Swallowing Problems | 176
Managing Vision Problems | 177
Managing Difficulties with Bladder Control | 179
Dealing with Loss of Mobility in the Advanced Stages | 179
Dealing with Mild Cognitive Symptoms | 180
Managing Confusion, Hallucinations, and Dementia | 181
Dealing with Apathy, Depression, Impulsivity, and Anxiety | 182
Managing Sleep Changes in Parkinson Disease | 183
Managing Orthostatic Hypotension | 184
Weight Loss | 185
Keeping Skin in Shape | 186

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viii CONTENTS

Hospitalization | 187
Elective Surgery | 188
Medications to Avoid | 189

10. Lifestyle Changes and Disease Management | 190

The Importance of Exercise | 190
Leisure Activities | 195
Stress Management | 196
Driving | 197
Using Complementary Therapies | 199
Spirituality | 199
Travel | 200
The Power of Music and Dance | 201
Getting Involved in the Parkinson’s Community | 202

11. Research | 206

Why Should I Consider Participating in Research? | 206
What Kinds of Research Studies May Be Open to
a Person with Parkinson Disease? | 208
Informed Consent | 211
Where Can I Learn More? | 213

12. The Care Partner | 214

Coping with Caregiver Stress and Fatigue | 217
Planning for the Future | 221
A Caregiver’s Story: Marilyn | 223
A Caregiver’s Story: Rich | 225

13. Community Involvement, Advocacy, and Resources | 227

A Passion for Advocacy | 229
A Passion for the Arts and Helping Others | 230

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Contents ix

Find Out More | 231

14. Planning For Your Future: Managing Your

Personal Affairs | 235
Murray Sagsveen, JD, and Laurie Hanson, JD
Your Emergency Notebook | 236
Informal and Formal Arrangements | 238
Durable Power of Attorney | 243
Trusts | 246
Health Care Directives | 252
Guardianship and Conservatorship | 257
Your Will | 259

Glossar y | 261
About the Authors and Contributors | 273
Index | 275

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ABOUT THE AAN NEUROLOGY NOW™

P AT I E N T B O O K S E R I E S

Here is a question for you:

If you know more about your neurologic condition, will you do better
than if you know less?

Well, it’s not simply optimism but hard data that show that indi-
viduals who are more knowledgeable about their medical condi-
tions do have better outcomes. So learning about your neurologic
condition plays an important role in doing the very best you can.
The main purpose of both the American Academy of Neurology’s
Neurology Now Books series and Neurology Now magazine is to
focus on the needs of people with neurologic disorders. Our goal
is to view neurologic issues through the eyes of people with neu-
rologic problems, in order to understand and respond to their
practical day-to-day needs.
So, you are probably saying, “Of course, knowledge is a good
thing, but how can it change the course of my disease?” Well, health
care is really a two-way street. You need to find a knowledgeable
and trusted neurologist; however, no physician can overcome the
obstacle of working with inaccurate or incomplete information.
Your physician is working to navigate the clues you provide in your

xi

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x ii AAN NEUROLOGY NOW BOOKS

own words combined with the clues from their neurologic exami-
nation, in order to arrive at an accurate diagnosis and respond to
your individual needs. Many types of important clues exist, such
as your description of your symptoms or your ability to identify
how your neurologic condition affects your daily activities. Poor
patient–physician communication inevitably results in less-than-
ideal outcomes. This problem is well described by the old adage,
“garbage in, garbage out.” The better you pin down and communi-
cate your main problem(s), the more likely you are to walk out of
your doctor’s office with the plan that is right for you. Your neu-
rologist is the expert in your disorder, but you and your family are
the experts in “you.” Physician decision making is not a “one shoe
fits all” enterprise, yet when accurate, individualized information is
lacking, that’s what it becomes.
Whether you are startled by hearing a new diagnosis or you
come to this knowledge gradually, learning that you have a neu-
rologic problem is jarring. Many neurologic disorders are chronic;
you aren’t simply adjusting to something new—you will need to
deal with this disorder for the foreseeable future. In certain ways,
life has changed. Now, there are two crucial “next steps”: the first
is finding good neurologic care for your problem, and the second
is successfully adjusting to living with your condition. This second
step depends on attaining knowledge of your condition, learning
new skills to manage the condition, and finding the flexibility and
resourcefulness to restore your quality of life. When successful, you
regain your equilibrium and restore a sense of confidence and con-
trol that is the cornerstone of well-being.
When healthy adjustment does not occur following a new diag-
nosis, a sense of feeling out of control and overwhelmed often per-
sists, and no doctor’s prescription will adequately respond to this
problem. Individuals who acquire good self-management skills are
often able to recognize and understand new symptoms and take
appropriate action. Conversely, those who are lacking in confi-
dence may respond to the same symptom with a growing sense

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A AN Neurolog y Now Books x iii

of anxiety and urgency. In the first case, “watchful waiting” or a

call to the physician may result in resolution of the problem. In
the second case, the uncertainty and anxiety often lead to multi-
ple physician consultations, unnecessary new prescriptions, social
withdrawal, or unwarranted hospitalization. Outcomes can be dra-
matically different depending on knowledge and preparedness.
Managing a neurologic disorder is new territory, and you
should not be surprised that you need to be equipped with new
information and a new skill set to effectively manage your con-
dition. You will need to learn new words that describe both your
symptoms and their treatment to communicate effectively with
the members of your medical team. You will also need to learn how
to gather accurate information about your condition when you
need it and to avoid misinformation. Although all of your physi-
cians document your progress in their medical records, keeping
a personal journal about your neurologic condition will help you
summarize and track all your medical information in one place.
When you bring this journal with you as you go to see your physi-
cian, you will be able to provide more accurate information about
your history and previous treatment. Your active and informed
involvement in your care and decision making results in a better
quality of care and better outcomes.
Your neurologic condition is likely to pose new challenges in
daily activities, including interactions in your family, your work-
place, and your social and recreational activities. How can you best
manage your symptoms or your medication dosing schedule in the
context of your normal activities? When should you disclose your
diagnosis to others? Neurology Now Books provide you with the
background you need, including the experiences of others who have
faced similar problems, to guide you through this unfamiliar ter-
rain. Our goal is to give you the resources you need to “take your
doctor with you” when you confront these new challenges. We are
committed to answering the questions and concerns of individuals
living with neurologic disorders and their families in each volume

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x iv AAN NEUROLOGY NOW BOOKS

of the Neurology Now Books series. We want you to be as prepared

and confident as possible to participate with your doctors in your
medical care. Much care is taken to develop each book with you in
mind. A special authorship model takes a multidisciplinary team
approach to put together the most up-to-date, informative, and
useful answers to the questions that most concern you—whether
you find yourself in the unexpected role of patient or caregiver. Each
authorship team includes neurologists with special expertise along
with a diversity of other contributors with special knowledge of the
particular neurologic disorder. Depending on the specific condi-
tion, this includes rehabilitation specialists, nurses, social workers,
and people or family members with important shared experiences.
Professional writers work to ensure that we avoid “doctor talk,” and
easy-to-understand definitions of new terms appear on the page
when a new word is introduced. Real-life experiences of patients
and families are found throughout the text to illustrate important
points. And feedback based on correspondence from Neurology Now
magazine readers informs topics for new books and is integral to
our quality improvement. These new features will be found in all
books in the Neurology Now Books series so that you can expect the
same quality and patient-centered approach in every volume.
I hope that you have arrived at a new understanding of why
“knowledge is empowering” when it comes to your medical care
and that Neurology Now Books will serve as an important foun-
dation for the new skills you need to be effective in managing a
neurologic condition.
Lisa M. Shulman, MD
Editor-In-Chief, Neurology Now™ Books
and Professor of Neurology
University of Maryland School of Medicine

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FOREWORD

As mortals with finite life spans, we unconsciously recognize that

middle age and beyond will be associated with medical conditions.
However, when confronted with an age-related neurologic “disease”
we tend to panic. This is especially true with Parkinson’s disease,
which has gained much publicity in recent years. Famous athletes
have become disabled with this condition, and relatives or friends
may be in nursing homes with Parkinson’s disease.
Knowledge about their condition is crucial to people with any
major disorder, and certainly this is true for Parkinson’s disease.
The early panic and initial despair at the diagnosis can be tem-
pered by knowledge. Parkinson’s disease compromises lives, but
it is treatable. With optimal treatment, people with Parkinson’s
disease can often lead quite normal lives for many, many years.
Obviously, this varies among individuals, but the diagnosis should
not be regarded as a death sentence. For example, in Olmsted
County, Minnesota (where I live), people with Parkinson’s disease
live to ages within three years of the life spans that would be pre-
dicted without the disease.
The primary author of this book, Dr. Sotirios Parashos, and the
other contributors are to be congratulated for writing this compre-
hensive text for people with Parkinson’s disease and their families.

xv

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xvi FOREWORD

It was written under the auspices of the American Academy of

Neurology, a physician organization that demands fair and balanced
works. They have addressed all the fundamental issues that con-
front individuals with Parkinson’s disease, defining terms and pro-
viding a balanced discussion. In the present era of electronic media
and the Internet, we are constantly confronted with medical “facts.”
Moreover, it is easy to use a search engine to find information
about virtually anything, including Parkinson’s disease. Of course,
the problem with the lay press is that the medical information is
not always vetted. The Internet dogmatically provides all sorts of
information, but how much of it is true? Consequently, an unbiased
and comprehensive book for people with Parkinson’s disease is cru-
cial, and this text provides a myriad of information that will serve
the Parkinson’s disease community well.
As you read this book, be reassured by the fact that Parkinson’s
disease is treatable; the goal for clinicians such as me is to keep peo-
ple in the mainstreams of their lives. As you will read, exercise and
activity are very important for people with Parkinson’s disease, and
optimum medical treatment is therefore crucial to allow such exer-
cise. Philosophies about Parkinson’s disease treatment vary among
clinicians. This is evident if you use the U.S. National Library of
Medicine search engine, PubMed; enter the search term “Parkinson’s
disease treatment,” and approximately 34,000 published articles
surface. If you scan some of the more-recent entries, you will realize
that treatment approaches are quite varied. The authors of this book
needed to be cognizant of those differing approaches while avoiding
legitimization of marginal therapies. Thus the treatment chapters
take a very comprehensive view of what is available and how cli-
nicians of disparate therapeutic philosophies might select specific
drugs or therapies. This background will be invaluable for patients
when interacting with their personal clinicians and also when read-
ing Internet entries.
Family and caregivers are important members of the Parkinson’s
disease team. Knowledge about this condition will help them

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Foreword x v ii

understand the lifestyle compromises that surface to variable

extents over the course of this disorder. As we age, we all will need
family and caregivers, and for those with Parkinson’s disease this is
especially true. They also will appreciate this book.
J. Eric Ahlskog, PhD, MD
Consultant in Neurology, Mayo Clinic, Rochester, MN
Professor of Neurology, Mayo Medical School
Author of another Oxford University Press book for those with
Parkinson’s disease: The Parkinson’s Disease Treatment Book:
Partnering with Your Doctor to Get the Most from Your Medications

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