Parkinsons Disease and the Family A New Guide

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 This book is meant to educate, but it should not be used as a sub-
stitute for personal medical advice. Readers should consult their
physicians for specific information concerning their individual
medical conditions. The authors have done their best to ensure
that the information presented here is accurate up to the time of
publication. However, as research and development are ongoing,
it is possible that new findings may supersede some of the data
presented here.
This book contains references to actual cases that Nutan Sharma
has encountered. However, names and other identifying character-
istics have been changed to protect the privacy of those involved.
Many of the designations used by manufacturers and sellers to
distinguish their products are claimed as trademarks. Where those
designations appear in this book and Harvard University Press
was aware of a trademark claim, then the designations have been
printed in initial capital letters (for example, Symmetrel).
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 Parkinson’s Disease
and the Family
a new guide

Nutan Sharma, M.D.

Elaine Richman, Ph.D.
Copyright © 2005. Harvard University Press. All rights reserved.

harvard university press

Cambridge, Massachusetts
London, England
2005

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 Copyright © 2005 by the President and Fellows of Harvard College
All rights reserved
Printed in the United States of America

Illustrations by Arleen Frasca

Cataloging-in-Publication Data available from the Library of Congress

Sharma, Nutan.
Parkinson’s disease and the family : a new guide / Nutan Sharma, Elaine
Richman.
p. cm.—(The Harvard University Press family health guides)
Includes bibliographical references and index.
ISBN 0-674-01679-3 (cloth : alk. paper)—ISBN 0-674-01751-X (paper : alk.
paper)
1. Parkinson’s disease—Popular works. I. Richman, Elaine. II. Title.
III. Series.
RC382.S48 2005
616.8⬘33—dc22 2005040346
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 Nutan Sharma dedicates this book to her parents, Moti Lal and
Krishan Kanta Sharma, whose unstinting support gave her the
opportunity to become a neurologist, and to her husband, Antonio J.
Aldykiewicz, Jr., and her son, Vikram E. Aldykiewicz, whose unstint-
ing support allows her to continue her work as a neurologist.

Elaine Richman dedicates this book to her good friend Dr. Charles P.
Barrett, whose Parkinson’s disease helped her understand the condi-
tion, and to her loving husband, Ralph Raphael, and children, David
and Matt Richman-Raphael.
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 Contents

Introduction 1
1 What Is Parkinson’s Disease? 4
2 The Diagnosis 19
3 Risk Factors 50
4 Treatment 58
5 Treatment Challenges and Setbacks 89
6 Finding the Help You Need 97
7 Preserving Intimacy 106
8 Depression 113
9 Dementia 130
10 Alternative Therapies 139
Copyright © 2005. Harvard University Press. All rights reserved.

11 Clinical Trials 152

12 Communicating with Your Treatment Team 162
13 When Long-Term Arrangements Are Required 170
14 The Wedding 181

Appendix: Resources 189

Notes 199
Glossary 201
References 211
Index 217

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 parkinson’s disease and the family
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
Copyright © 2005. Harvard University Press. All rights reserved.

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 Introduction

Ken was embarrassed by his father’s funny gait and slow way of talk-
ing. His dad, though, had a way of making everyone think that he
was managing just fine.

Marissa was one of the first people Sue told about her husband’s
diagnosis of Parkinson’s disease. What Sue wanted most was the
unconditional support of a friend with whom she could share her
worries.

Parkinson’s disease (PD) is a chronic and progressive condi-

tion that affects not only the person with the disease but also his
or her loved ones. Everyone reacts differently to a diagnosis of
Copyright © 2005. Harvard University Press. All rights reserved.

PD—the person with the condition, the spouse, partner, chil-

dren, extended family, coworkers, and friends. No one can tell
you how to feel or how to behave, but as you talk with more and
more people about Parkinson’s disease, you will find common
threads in everyone’s experience.
We recommend that you embark on your journey with Par-
kinson’s disease by gathering information. Start with the ba-
sics: anatomy, symptoms, course of the disease, psychological
aspects, and so on. There will be a lot of decisions ahead, and
they are best made when you know the facts. Families say that a
search for facts gives them comfort and a sense of control. If you
are new to Parkinson’s disease, you will soon see that you have

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 2 introduction

joined a large community of passionately supportive health care

providers, researchers, families, and advocacy groups.
Modern medicine has made tremendous strides in the last
century, contributing to our increased lifespan and an improved
quality of life for those with chronic illnesses. Our knowledge
of the human body and how it malfunctions has grown expo-
nentially. The result is that highly skilled, knowledgeable, and
compassionate care is available from highly trained medical
professionals. The difficulty, however, is in how to convey this
knowledge and the wide array of potential treatments to people
affected by the disease.
The goal of this book is to provide straightforward informa-
tion to the general public about what is known about Parkinson’s
disease and its treatment. This book is meant for people with
Parkinson’s disease and their friends and family members. We
do not live in isolation, despite the ubiquity of television and the
Internet, and it is important for everyone involved in the life of
someone with Parkinson’s disease to understand the illness. For-
tunately, we no longer live in a society where people are afraid to
discuss disease. Knowledge is essential to minimize fear. We
hope that the information in this book will help make people
Copyright © 2005. Harvard University Press. All rights reserved.

less fearful about Parkinson’s disease and more likely to become

actively involved in their own treatment or that of a loved one.
The first several chapters contain medical information, in
plain English, that describes what we know about the causes of
Parkinson’s disease and the many aspects of its treatment. They
also contain practical information that should help answer some
of the most common questions that arise about daily life: ques-
tions about driving, travel, work, intimacy, mental health, alter-
native medicine, and so on. The patient anecdotes that are found
throughout the book illustrate the problems faced by many fam-
ilies coping with the diagnosis of Parkinson’s disease.
As a movement disorder neurologist, I (Dr. Sharma) have had

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 introduction 3

the pleasure of developing long-term relationships with many

patients and the people closest to them. It is a great joy to hear
news of family weddings, the birth of grandchildren, and other
special life events. People with PD generally live with the disease
for many years, and so I have met and spoken at length with
many family members and friends of my patients. I count
among the greatest privileges in the practice of medicine the op-
portunity to work with whole families, to coach them in coping
with illness, and to help them live as active and independent
lives as possible.
Throughout this book, we have tried to address the concerns
of friends and family members as well as those with Parkinson’s
disease. We have tried to shed light on what the diagnosis
means to everyone within the family unit and explore what the
responses and fears of others may be. It is our hope that this
book will serve as a springboard for family talks and for open
and meaningful discussions between patients and physicians.
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Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 1
What Is Parkinson’s Disease?

Parkinson’s disease has troubled people since ancient times.

Early books from China and India describe patients whose
symptoms we recognize. The first modern description of PD ap-
peared in 1817 in a paper by a London physician named James
Parkinson. He called the paper “An Essay on the Shaking Palsy.”
He summarized what he saw in this way:

The patient can [rarely] form any recollection of the precise

period of its commencement. The first symptoms perceived
are, a slight sense of weakness, with a proneness to trem-
bling in some particular part; sometimes in the head, but
most commonly in one of the hands and arms . . . The pro-
Copyright © 2005. Harvard University Press. All rights reserved.

pensity to lean forward becomes invincible . . . As the debil-

ity increases and the influence of the will over the muscles
fades away, the tremulous agitation becomes more vehe-
ment.

When most of us think of Parkinson’s disease, we think of the

uncontrollable shaking of an arm or a leg. This is true, and it is
much more.
The shaking, or tremor, is one of the four cardinal signs of
Parkinson’s disease. The term cardinal sign refers to the physical
features that are seen in the vast majority of men and women

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 what is parkinson’s disease? 5

with PD. Parkinson’s disease affects people from every nation of

the world. In the United States alone, more than 1.2 million peo-
ple have Parkinson’s disease and nearly 50,000 new cases are di-
agnosed each year.
Parkinson’s disease is one of the most common neurological
ailments in North America. One of the predominant factors con-
tributing to this phenomenon is that people are living longer.
(Our average life span has increased from 50 years in 1900 to an
all-time high of 77.2 years in 2001.)1 Because Parkinson’s disease
is typically an illness of the middle and later years, it is not sur-
prising that the number of older people with Parkinson’s disease
is increasing. The “baby boomers” are growing older. As the pro-
portion of Americans over the age of 55 grows, so will the num-
ber of Americans with Parkinson’s disease.
Parkinson’s disease belongs to a class of diseases called move-
ment disorders. A movement disorder is a neurological con-
dition in which a person gradually loses control of voluntary
movements like walking or sitting quietly or using a pen. (See
Figure 1.)
Scientists and physicians describe two basic categories of
movement disorders. One is characterized by unusual or excess
Copyright © 2005. Harvard University Press. All rights reserved.

activity. The other is characterized by slowness or absence of

movement. Parkinson’s disease fits into the second category be-
cause people with the condition often move slowly and deliber-
ately. The terms hypokinesia, bradykinesia, and akinesia are some-
times used to refer to a condition such as Parkinson’s disease
where movement is slow or absent.
Parkinson’s disease is a chronic and progressive condition.
This means that it persists for a long period and that the symp-
toms grow progressively worse. It is not contagious; nor is it in-
herited, except in a very small number of cases. In the vast ma-
jority of cases, PD is not passed on from parent to child, so
worrying about heredity is unwarranted. Although there are a

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 6 what is parkinson’s disease?
Copyright © 2005. Harvard University Press. All rights reserved.

figure 1. A person with Parkin-

son’s disease. Note the slightly
stooped posture and tremor in-
volving one arm.

set of symptoms that affect people with Parkinson’s disease, it is

important to realize that not everyone is impacted in the same
way or to the same extent.
There are no laboratory tests for diagnosing Parkinson’s dis-
ease. A physician usually examines a patient several times over a

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,
 what is parkinson’s disease? 7

period of twelve to twenty-four months before making the diag-

nosis, to be sure that the symptoms do not belong to one of sev-
eral other diseases that resemble PD.
In some people, Parkinson’s disease develops slowly. In oth-
ers, the progression of symptoms is rapid. Symptoms may be
minor or disabling. Each patient’s experience is unique. In the
sections that follow we provide information to help all patients
and their families cope with the inevitable changes they experi-
ence after a diagnosis of PD.

The Anatomy of Parkinson’s Disease

Parkinson’s disease is a neurological condition resulting from
the death of cells in a portion of the brain called the basal gan-
glia. In the early 1960s scientists conclusively linked the loss of
brain cells of the basal ganglia to symptoms of Parkinson’s dis-
ease. (See Figure 2a–2c.)
Every portion of the brain plays a unique role. The basal gan-
glia is responsible for maintaining body posture, muscle tone,
and smooth, purposeful muscle activity—movements we nor-
mally perform without even thinking, such as walking. An ab-
Copyright © 2005. Harvard University Press. All rights reserved.

normality in the basal ganglia results in poorly regulated muscle

movements and other signs that we will discuss later.
Specific cells within the basal ganglia normally produce dopa-
mine, a chemical messenger that is responsible for transmitting
signals to other portions of the brain. In people with Parkinson’s
disease these dopamine-producing cells die off. The cornerstone
of treatment for PD is the replacement of dopamine, the chemi-
cal messenger that is no longer produced because the cells re-
sponsible for its production have died. (See Figure 3.)
When dopamine is low, nerve cells of the basal ganglia trans-
mit signals abnormally, making it difficult for a person to con-
trol muscle movements. The cause of the nerve cell death is

Parkinson's Disease and the Family : A New Guide, Harvard University Press, 2005. ProQuest Ebook Central,