Parkinson's Disease A Complete Guide for Patients and

Families 3rd Edition

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To our dear colleague, friend, and husband—Bill Weiner, who did not
live to see the publication of this third edition.

Bill’s energy, enthusiasm, and commitment to improve the lives of people

with Parkinson’s disease was the inspiration behind this book from the
first through the third edition. In his own natural style, Bill dictated the
original chapters “off the cuff,” just like he was sitting across from one of
his many patients. One of these patients recently remembered him as “a
compassionate physician who treated his patients as adults and partners
in managing their illness.” His wisdom, humanity, candor, and optimism
will live on in this book and in our hearts.
LMS and AEL
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 Contents

Preface ix

Part I. In troduction

1. What Is Parkinson’s Disease? 3

2. Who Gets Parkinson’s Disease? 20

Part II. Signs and Symptoms of Parkinson’s Disease

3. Early Symptoms 37
4. Moderate Parkinson’s Disease 49
5. Advanced Parkinson’s Disease 66
6. Behavioral Changes and Psychiatric
Symptoms 83
7. Young-Onset Parkinson’s Disease 98

Part III. Di agnosing Pa rk inson’s Disease

8. How a Diagnosis Is Made 111

9. Types of Parkinsonism 125
10. Diagnosing Other Neurologic
Problems 136
viii Contents

Part IV. Treatmen t of Pa rk inson’s Disease

11. How the Brain Works and How Treatment

Works 153
12. Choosing the Correct Medications 168
13. Drug Therapies 184
14. Exercise and Rehabilitation Therapy 221
15. Diet and Complementary/Alternative
Therapies 233
16. Surgical Treatments 242

Part V. Other Issues

17. Illness, Hospitalization, and Parkinson’s

Disease 263
18. Parkinson’s Disease Research 270
19. Questions and Answers 284

Resources 303
Index 309
 Preface

In the thirteen years since the first edition of this

book was published, much progress has been made in the manage-
ment and treatment of Parkinson’s disease. There have been import-
ant developments in understanding the basic causes of Parkinson’s
and the role of genes and heredity in this disease, advances in the
role of surgery as a treatment, and the introduction of new drugs to
treat symptoms. There has also been increased interest in research
on disease-modifying or neuroprotective therapies that may slow the
progression of Parkinson’s. This new edition discusses all of these de-
velopments and retains the original intent and purpose of the book to
help patients and their families develop a fuller understanding of what
living with Parkinson’s disease is like. When people first learn of the
diagnosis of Parkinson’s disease, they generally know little about this
illness. Understandably, a myriad of questions arise. Many patients and
families become alarmed as they translate their limited experience and
knowledge to themselves. The fact is that the effect of Parkinson’s dis-
ease on people’s lives has been fundamentally altered in recent years,
as new and better treatments have become available.
Indeed, Parkinson’s disease has become a disorder that does not
prevent people from living productive and satisfying lives for many
years. In fact, a large proportion of those with Parkinson’s disease re-
main independent in the activities of daily living (ADL) ten years after
diagnosis. Understanding the symptoms of Parkinson’s disease and the
management of the disease is the key to each person’s ability to pre-
serve his or her sense of stability and control. There are many examples
of medical conditions that are chronic illnesses, including arthritis,
asthma, diabetes, and Parkinson’s disease. In every one of these exam-
ples, the recipe for living well with the disorder involves having a clear
x Preface

understanding of both the medical condition and the pivotal role that a
prepared individual can assume in the management of his or her own
health. For example, in making clinical decisions, a physician relies on
the history and feedback that the patient and caregivers provide. There
is no one formula for the successful management of Parkinson’s dis-
ease. Instead, success relies upon an individualized and comprehensive
plan of care based on shared decision-making between the experienced
physician and the prepared patient.
We have written a book that explores Parkinson’s disease in straight-
forward and honest terms. We have explained what goes wrong in the
brain that leads to the disorder, and we have also explained how a phy-
sician goes about making the diagnosis of Parkinson’s disease. We have
discussed the subtleties involved in diagnosis, so people with Parkin-
son’s disease and their families understand the challenges that some-
times arise in arriving at a correct diagnosis.
Parkinson’s disease is a progressive problem that gradually worsens
with time. In separate chapters we have delineated the common prob-
lems associated with the early, middle, and advanced stages of Par-
kinson’s disease. We not only discuss these problems in considerable
detail but also offer numerous suggestions based on our experiences
regarding how to better live with these problems.
Most people think that the major problems of Parkinson’s disease re-
late to problems with movement, including tremor and walking. How-
ever, patients with many years of experience with Parkinson’s are also
familiar with a wide array of nonmotor symptoms, both due to the dis-
ease and its treatment. Therefore, we have a separate chapter (Chapter
6) in which we extensively review the common nonmotor symptoms
that may occur, including depression, apathy, anxiety, sweating, sex-
ual dysfunction, memory problems, sleep disturbance, impulse control
disorders (for example, excessive gambling, shopping, computer use,
eating), bladder problems, and constipation.
The role of drug therapy in the treatment of Parkinson’s disease is
thoroughly discussed in this book. In the last forty-five years, impres-
sive advances in the therapy of Parkinson’s disease have been made.
We outline how Parkinson’s drugs work, why they are helpful, the side
effects associated with them, and what patients can realistically expect
of each of them. How to use medications safely and effectively, and
 Preface xi

the various drug combinations, are also thoroughly reviewed, as is drug

therapy for the various nonmotor symptoms.
The role of surgery in the treatment of Parkinson’s disease continues
to evolve. We review the different types of surgery that can be of value
in Parkinson’s disease. Importantly, we present the key questions that
patients and families should ask themselves and their physician before
considering surgery as a therapeutic option.
The book closes with a long chapter of commonly asked questions
and clear and concise answers to these many difficult questions that
often arise during an office visit. (The subject of each question and
answer is covered in much greater detail in the many chapters within
the book.)
Our many years of experience with taking care of patients with
Parkinson’s disease have taught us that well-informed, knowledgeable
patients do better over time. Our goal in this edition is to contribute
to a foundation of knowledge for persons who are living with Parkin-
son’s disease in order to help them make healthy adjustments to these
changes, to develop competency in self-monitoring and self-manage-
ment, and to become effective partners in shared decision-making with
their physician. The chapters of the book can be read in sequence,
but they can also be read separately. To permit this approach, we have
incorporated a certain amount of duplication in the information pro-
vided. For those reading chapters in sequence, this can serve to rein-
force the important issues covered.
We thank all the patients and families whom we have taken care
of over the years, for sharing with us their insights, experiences, and
responses to Parkinson’s disease. The spirit that the Parkinson’s com-
munity exhibits is an enduring inspiration. We hope that we success-
fully communicate the world conveyed by our patients to the larger
community of persons and families affected by Parkinson’s disease.
We thank Cheryl Grant-Johnson and Cherika Greene, who have dil-
igently supported us with fine administrative skills during the prepa-
ration of this book. We thank our editors, Jacqueline Wehmueller of
the Johns Hopkins University Press as well as Alice Lium and Linda
Strange, who helped us transform our initial text into an easily readable
and patient-friendly format. We also thank special benefactors who
have generously supported our research on this project as well as many
xii Preface

other Parkinson’s disease–related projects: Rosalyn Newman, Morton

Shulman, Jack and Mary Clark, the Catherine Manson family, Lily
Safra and the Edmond J. Safra Philanthropic Foundation, the Eugenia
Brin family, and the Frederick Henry Prince Trust.
Part I

Introduction
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 chapter 1

What Is
Parkinson’s Disease?

• What are the symptoms of Parkinson’s disease?

• What causes these symptoms?
• What is the difference between Parkinson’s disease and
parkinsonism?
• When should I tell people that I have Parkinson’s?

Whenever a diagnosis of Parkinson’s disease is made,

patients and families naturally ask, “What is Parkinson’s disease?” As
doctors treating people who have Parkinson’s, of course, we discuss
this question with many patients. But we—and they—are aware that
the answer is both straightforward and elusive.
Parkinson’s disease is a degenerative neurologic disease. Degen-
erative means “declining in quality”—thus, the disease increases in
severity over time; neurologic refers to the nervous system. One could
therefore say that Parkinson’s disease is a disease of the nervous system
that gets worse over time.
We also describe Parkinson’s disease as a chronic, progressive neu-
rologic disease. Chronic means “of long duration”; progressive means
“proceeding in steps” or “advancing.” Parkinson’s disease does not go
away, and it gradually gets worse.
Parkinson’s disease is named after the English physician James Par-
kinson, who first described the illness. His original paper describing
this disorder, published in 1817, was titled “Essay on the Shaking Palsy,”
and to this day Parkinson’s disease is still sometimes called the “shak-
4 Introduction

ing palsy.” Ancient medical writings include descriptions of people with

a disorder that fits the clinical picture of this disease, but Parkinson is
given credit for providing the most thorough description of it. Another
name for this illness is paralysis agitans, which is simply the Latin trans-
lation of “shaking palsy.” The names Parkinson’s disease, shaking palsy,
and paralysis agitans all refer to the same illness.
There is some good news. True Parkinson’s disease progresses
slowly. Even after the symptoms have become clear enough to allow
a definitive diagnosis, it is usually years, maybe ten or more years, be-
fore a person suffers from a serious disability. Further, treatments are
available that relieve symptoms, so that years, sometimes a decade or
more, can go by before symptoms have a significant impact on a per-
son’s quality of life.
In people who have Parkinson’s disease, specific groups of brain
cells called neurons are slowly and progressively injured, then selec-
tively degenerate or die. This process causes the typical symptoms of
Parkinson’s disease, which doctors call “characteristic symptoms” be-
cause they are the major features of Parkinson’s. (In this book, when
we say symptoms are “characteristic” of or “characterize” a disorder,
we mean they are typical of that particular disorder and distinguish it
from others.)
These are the characteristic symptoms of Parkinson’s disease: Peo-
ple who have Parkinson’s may tremble involuntarily. They find their
muscles become rigid and stiff, and they lose their ability to make rapid,
spontaneous movements. They walk in a recognizable manner, with a
typical gait in which the body is bent or flexed, and they may have dif-
ficulty maintaining their balance. These symptoms do not emerge all
at once. For example, walking may become slower and may not worsen
for years. Balance is unlikely to be a problem until the more advanced
stages. And tremor, the most recognizable feature, does not occur in
everyone. The characteristic symptoms of moderate Parkinson’s dis-
ease can be remembered with the acronym TRAP: T is for tremor and
R for rigidity. A is for akinesia (meaning, literally, “lack of movement”),
referring to the loss of spontaneous or voluntary movement and loss of
fluid motion (the slowing down, rather than complete loss, of move-
ment is called bradykinesia). P is for postural instability, which involves
 What Is Parkinson’s Disease? 5
table 1.1
Characteristic Signs and Symptoms of Parkinson’s Disease
T Tremor Involuntary trembling of the limbs (often
the initial symptom)
R Rigidity Stiffness of the muscles
A Akinesia Lack of movement or slowness in initiat-
ing and maintaining movement
P Postural instability Characteristic bending or flexion of the
body, associated with difficulty in main-
taining balance and disturbances in gait

difficulties with balance and the risk of falling (Table 1.1). Parkinson’s
has neither a cure nor any treatment to slow down its progression.
Furthermore, the signs and symptoms* of early Parkinson’s are only
subtly different from those of other neurologic diseases, some more
serious and some less serious than Parkinson’s. The similarities among
these diseases can make diagnosis difficult, and as frustrating as it may
be for a person who has Parkinson’s symptoms, often the only way to
identify Parkinson’s disease for sure is to wait and see (see Chapter 8).

What Happens in Parkinson’s Disease?

In Parkinson’s disease, neurons (nerve cells) of the brain area known

as the substantia nigra (Latin for “black substance”) are primarily af-
fected (Figure 1.1). When neurons in the substantia nigra degenerate,
the brain’s ability to generate body movements is disrupted, and this
disruption produces signs and symptoms characteristic of Parkinson’s
disease—tremor; rigidity; akinesia (lack of movement or loss of spon-
taneous movement) and bradykinesia (slowness of movement); and
problems with walking and posture. Other areas of the brain are also
affected, especially later in the disease, and it is this aspect of the dis-

*Symptoms are what the patient complains of; signs are what the doctor finds on ex-
amination. Parkinson’s has both signs and symptoms that are typical of the disease.
We discuss them in depth in later chapters.
 Cerebral hemisphere

Substantia nigra

Cerebral hemisphere

Substantia nigra

FIGURE 1.1 Location of the substantia nigra (the area of the brain that contains dopamine
cells), deep within the brain. The large cerebral hemispheres enclose and cover the substan-
tia nigra as well as other deep midbrain structures.
 What Is Parkinson’s Disease? 7

ease that likely accounts for the broad spectrum of symptoms that can
eventually be a part of the illness.
The symptoms of any brain disease are determined in part by the
location of the neurons that degenerate. For example, Alzheimer’s dis-
ease involves the degeneration of neurons of the cerebral cortex and
results in memory loss and mental deterioration. In amyotrophic lateral
sclerosis (ALS, or Lou Gehrig’s disease), the selective death of motor
neurons in the spinal cord and brain causes profound motor weakness.
Again, in Parkinson’s disease, the affected neurons are especially those
located in the substantia nigra, an area of the brain that is important
for control and regulation of motor activity (movement).

What Causes the Symptoms?

The substantia nigra is a very small area located deep within the
brain. There is one substantia nigra on the right side of the brain and
one on the left, but for ease of discussion, the medical literature refers
to them as if they were a single structure. The symptoms of Parkinson’s
disease do not become noticeable until about 50 to 70 percent of the
cells of the substantia nigra have died, because the human nervous
system has multiple safety factors and redundancies built into it. For a
long time, these safety factors are able to take over the activities of the
dying cells.
In autopsies of persons who had Parkinson’s disease, the brain ap-
pears to be relatively normal except that the substantia nigra has lost
its usual black pigment (Figure 1.2). Under the microscope we can see
substantially fewer cells in this substantia nigra than in that of healthy
brains, and the remaining cells often show signs of abnormality. One
hallmark of Parkinson’s disease is the presence of small bodies known
as Lewy bodies within the remaining substantia nigra cells.
The substantia nigra accounts for an extremely small percentage of
the brain’s weight, but because of its important electrochemical con-
nections with motor centers (brain centers that control movement), it is
a vital component in how we move. Specifically, a series of complicated
electrical and chemical events within the brain transmits information
from neuron to neuron. The chemicals that brain cells use to commu-