Parkinsons Disease Frequently Asked Questions

A Guide to Parkinson’s Disease
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1
People affected by Parkinson’s disease (PD) — those living

with Parkinson’s, their family members, their friends and the
healthcare professionals that care for them — are all looking
for answers to questions about the disease, its symptoms
and treatments. This booklet is a compilation of the most
frequently asked questions that the Parkinson’s Foundation
receives through its Helpline. Some of these questions have
simple answers, while others have complicated answers that
are still evolving.
While each question is answered as comprehensively as possible, it is
important to note that Parkinson’s is truly an individualized disease.
Each person’s experience with Parkinson’s, including its symptoms and the
rate at which it progresses, is different. Not all people living with Parkinson’s
will experience all of the symptoms and side effects discussed in this booklet.
Rather, each person may find that certain symptoms are more troublesome
and may experience these symptoms at different points in the disease.
If you have additional questions that you would like to discuss, please call
our Helpline at 800-4PD-INFO or email us at [email protected].
2
Contents
Understanding
Parkinson’s 5
Overview 5
What Happens in Parkinson’s? 8
Motor Symptoms & Complications 11
Non-motor Symptoms 18 PD Mid-Stride
7
Living with
Parkinson’s 39
Finding Support 39
Staying Independent 40
The Family & Parkinson’s 42
3
Treating
Parkinson’s 27
Finding a Doctor 27
Medications & Surgical Treatments 28
Complementary & Alternative Therapies 35
Exercise & Nutrition 37
Parkinson’s Research:
The Future 44
Drug Discovery & Development 44
Playing a Part in Research 46
Finding the Cure 48
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This book has been made possible through the

generous donations of thousands of individuals
affected by Parkinson’s.
Design: Ultravirgo
5
chapter one
Understanding
Parkinson’s
Overview
What is Parkinson’s Disease?
Parkinson’s disease (PD) is a chronic and progressive movement disorder
that involves the malfunction and death of vital nerve cells in the brain,
called neurons. Some of these dying neurons produce dopamine, a chemical
that sends messages to the part of the brain that controls movement and
coordination. As PD progresses, the amount of dopamine produced in the brain
decreases, leaving a person unable to control movement normally.
Parkinson’s was originally described in 1817 by James Parkinson in his Essay on

the Shaking Palsy. It is not considered a fatal disease and the way it progresses
is different for each person.
Primary motor signs of Parkinson’s disease include tremor, slowness, rigidity

and postural instability. Most people with Parkinson’s also experience non-
motor symptoms that may precede motor symptoms — and a PD diagnosis
— by years. The most recognizable early symptoms include loss of sense of
smell, constipation, mood and sleep disorders, and neurogenic orthostatic
hypotension (low blood pressure when standing up).
Learn more about symptoms on page 11.
6 frequently asked questions
How many people are currently living with Parkinson’s disease?

Worldwide, there are more than 10 million people living with Parkinson’s
disease. In the United States (US), as many as one million people live with
Parkinson’s, which is more than the combined number of people with multiple
sclerosis, muscular dystrophy and ALS. Approximately 60,000 Americans are
diagnosed with PD each year. This number does not reflect the thousands of
cases that go undetected.
What is the average age of PD diagnosis?

The average age at which someone is diagnosed is 60. Incidence of PD
increases with age, but an estimated four percent of people with PD are
diagnosed before the age of 50. This is referred to as young-onset PD.
Although symptoms are similar, people with young-onset PD often face
different financial, family and employment concerns.
Can Parkinson’s be cured?

The answer is no — not yet. However, many symptoms of Parkinson’s disease
can be treated and researchers are making advances in understanding the
disease, its causes and how to best treat it.
What is Parkinson’s versus parkinsonism?

Because there are no definitive diagnostic tests for Parkinson’s, the diagnosis
can sometimes be unclear. The term “parkinsonism” is a generic descriptive
term that refers to the whole category of neurological diseases that
causes slowness of movement. This category includes the classic form of
Parkinson’s disease, many atypical variants, sometimes called “Parkinson’s
Plus Syndromes,” and any other brain disease that resembles Parkinson’s,
such as normal pressure hydrocephalus, vascular parkinsonism or drug-
induced parkinsonism. In all cases of parkinsonism, there is a disturbance in
the dopamine systems of the basal ganglia — a part of the brain that controls
movement. This dopamine deficiency leads to the characteristic combination
of tremor, slowness, rigidity and postural instability.
Classic (idiopathic) Parkinson’s is the most common and most treatable

form of parkinsonism. For a significant minority, about 15 percent of all
persons with parkinsonism, one of the atypical variants may be present.
These conditions are more serious and less treatable than classic PD, and
include multiple system atrophy (MSA), progressive supranuclear palsy (PSP),
corticobasal degeneration (CBD) and Lewy Body Dementia.
For more information, visit Parkinson.org/Library or call 800-4PD-INFO.
understanding parkinson’s 7
How is Parkinson’s diagnosed?

Often, the diagnosis of Parkinson’s is first made by an internist or family
physician. Many people seek an additional opinion from a neurologist with
experience and specific training in the assessment and treatment of PD —
referred to as a movement disorder specialist.
To diagnose Parkinson’s, the physician takes a careful neurological history and

performs an examination. Although there are no standard diagnostic tests for
Parkinson’s, DaTscan, an imaging technology, may provide beneficial insights
to help a doctor confirm a PD diagnosis in the early stages of the disease. The
main role of any additional testing is to exclude other diseases that imitate
Parkinson’s disease, such as stroke or hydrocephalus.
Very mild cases of PD can be difficult to confirm, even by an experienced

neurologist. This is in part because there are many neurological conditions that
mimic the appearance of Parkinson’s.
The Parkinson’s Foundation recommends that a person with symptoms

resembling those of PD consider making an appointment with a movement
disorder specialist.
Learn more about how to find a Parkinson’s specialist on page 28.
What are the stages of Parkinson’s?

The stages of Parkinson’s correspond both to the severity of movement
symptoms and to how much the disease affects a person’s daily activities.
At all stages of Parkinson’s, effective therapies are available to ease
symptoms and make it possible for people with PD to live well.
With mild Parkinson’s, movement symptoms, often tremor, occur on one side
and may be inconvenient, but do not affect daily activities. Friends may notice
changes in a person’s posture, walking ability or facial expression. Regular
exercise improves and maintains mobility, flexibility, range of motion and
balance, and also reduces depression and constipation.
With moderate Parkinson’s, movement symptoms occur on both sides of the

body. The body moves more slowly and trouble with balance and coordination
may develop. “Freezing” episodes — when the feet feel stuck to the ground —
may occur. Parkinson’s medications may “wear off” between doses and may
cause side effects, including dyskinesias (involuntary movements). Regular
exercise, perhaps with physical therapy, continues to be important for good
mobility, and balance and occupational therapy may provide strategies for
maintaining independence.
With advanced Parkinson’s, a person may have great difficulty walking; may
be in a wheelchair or bed most of the day. The person is not able to live alone
and will need assistance with all daily activities. Cognitive problems may be
prominent, including hallucinations and delusions. Balancing the benefits of
medications with their side effects becomes more challenging.
How quickly does Parkinson’s progress?

Each person with Parkinson’s experiences the disease differently. Some people
experience tremor as their primary problem while others may instead suffer
from frequent falls, muscle rigidity or slowness of movement. Some people
with Parkinson’s have a very stable course with little progression over many
years while others develop disability earlier in the disease. Physicians cannot
accurately predict the course of Parkinson’s for any individual, and must
instead focus on reducing a person’s symptoms, preventing complications and
improving his or her quality of life.
There are rating scales that a physician may use to understand PD

progression. The most commonly used rating scales are focused on the
motor symptoms but new scales include information on non-motor symptoms
z(such as problems with sense of smell).
What Happens in Parkinson’s?

What happens to brain cells in Parkinson’s?
Parkinson’s disease occurs when a group of cells in the area of the brain
called the substantia nigra begin to malfunction and die. These cells produce
a chemical called dopamine. Dopamine is a neurotransmitter, or chemical
messenger, that sends information to the parts of the brain that control
movement and coordination.
When a person has Parkinson’s, the dopamine- producing cells begin to

degenerate and the amount of dopamine produced in the brain decreases.
Messages from the brain telling the body how and when to move are delivered
abnormally, leaving a person incapable of initiating and controlling movements
in a normal way. For most people, this process leads to the characteristic motor
symptoms of Parkinson’s: tremor, slowness, rigidity and postural instability.
Scientists are also exploring the idea that loss of cells in other areas of the
brain and body contribute to Parkinson’s. For example, researchers have
discovered that the hallmark sign of Parkinson’s disease — clumps of a protein
alpha-synuclein, which are also called Lewy bodies — are found not only in the
mid-brain but also in the brain stem and the olfactory bulb. These areas of
the brain correlate to non-motor functions such as sense of smell and sleep
regulation. The presence of Lewy bodies in these areas could explain the
non-motor symptoms experienced by some people with PD before any motor
sign of the disease appears. The intestines also have dopamine cells that
degenerate in Parkinson’s, and this may be important in the gastrointestinal
symptoms that are part of the disease.
What causes Parkinson’s disease?

To date, despite decades of intensive study, the causes of Parkinson’s remain
unknown. Many experts think that the disease is caused by a combination of
genetic and environmental factors, which may vary from person to person.
Scientists have identified aging as an important risk factor; there is a two to

four percent risk for PD among people over age 60, compared with one to two
percent in the general population.
Genetic Factors
The vast majority of Parkinson’s cases are not directly inherited. About 15 to 25
percent of people with Parkinson’s report having a relative with the disease. In
large population studies, researchers have found that people with an affected
parent or sibling have about twice the risk of developing PD compared to
someone without an affected relative. However, even with a positive family
history, the risk of developing PD is less than 10 percent.
Researchers have discovered several gene mutations that can cause the
disease directly, but these affect only a small number of families. Some of
these mutations involve genes that play a role in dopamine cell functions.
Parkinson’s has developed at an early age in individuals with mutations
in genes for parkin, PINK1, LRRK2, DJ-1, and glucocerebrosidase, among
others. However, genetic testing is not currently recommended as part of the
evaluation of a person with PD.
Because genetic forms of a disease can be studied in great detail in the

laboratory, and because understanding the rare genetic forms of Parkinson’s
may help us to understand more common forms of the disease, genetics is
currently the subject of intense research.
For more information:

Listen to our Substantial Matters Podcast #7: Genetics as a Guide to
Neuroprotection in Parkinson’s Disease at Parkinson.org/Podcast.
Download our fact sheet “Genetics and Parkinson’s Disease:
What have we learned?” at Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
Environmental Factors
Some scientists have suggested that Parkinson’s disease may result from
exposure to an environmental toxin or injury. Epidemiological research has
identified several factors that may be linked to Parkinson’s, including rural
living, well water, manganese and pesticides.
Some studies have demonstrated that prolonged occupational exposure to

certain chemicals is associated with an elevated risk of PD. These include the
insecticides permethrin and beta-hexachlorocyclohexane (beta-HCH), the
herbicides paraquat and 2,4-dichlorophenoxyacetic acid and the fungicide
maneb. In 2009, the US Department of Veterans Affairs added Parkinson’s
to a list of diseases possibly associated with exposure to Agent Orange.
A synthetic neurotoxin agent called MPTP can also cause immediate and
permanent parkinsonism. The compound was discovered in the 1980s
in individuals who injected themselves with a synthetic form of heroin
contaminated with MPTP. Cases of MPTP-induced Parkinson’s in the general
population are exceedingly rare.
It is noted that a simple exposure to an environmental toxin is never enough to

cause Parkinson’s. Most people exposed to a toxin do not develop the disease.
In fact, there is no conclusive evidence that any environmental factor, alone,
can be considered a cause of the disease. However, environmental factors have
been helpful in studying laboratory models of Parkinson’s. Scientists continue
to pursue these clues to understand why Parkinson’s disease occurs.
Can a bad fall, accident or shock cause Parkinson’s disease?

Many people with Parkinson’s report that their symptoms first became
apparent after a severe shock, such as a head injury, a medical illness, a
surgical operation or severe emotional stress. Because Parkinson’s is a slow
degeneration of brain cells that occurs over many years before symptoms
appear, it seems unlikely that any single event causes the disease. There is no
convincing evidence that a mild head injury can lead to Parkinson’s. Traumatic
brain injury — injury that results in amnesia or loss of consciousness — has been
associated with an increased risk of developing PD years after the injury. The
syndrome of parkinsonism and dementia that occurs in some boxers is the
result of hundreds of blows to the head over many years.
For a person who associates the onset of Parkinson’s with a fall, head injury or
an extreme stressor, the likely explanation is that this individual already had mild,
unrecognized Parkinson’s that became more evident in response to the stressor.
Motor Symptoms & Complications

What is drug-induced Parkinson’s?
Is it permanent or reversible?
Drug-induced parkinsonism is a condition that mimics Parkinson’s. It is caused
by drugs that block the effects of dopamine in the brain. A person experiencing
drug-induced Parkinson’s will have symptoms — resting tremor, rigidity,
slowness of movement, problems with balance and others — that may be
clinically indistinguishable from classic Parkinson’s.
Drugs that can cause parkinsonism include neuroleptic tranquilizers, sometimes

used to control hallucinations or agitation, or to induce sleep. Examples
of this class of drugs include chlorpromazine (Thorazine®), haloperidol
(Haldol®), fluphenazine (Prolixin®), pimozide (Orap®), risperidone (Risperdal®),
aripiprazole (Abilify®) and olanzapine (ZYPREXA®). Drugs for nausea such as
metoclopramide (Reglan®) and prochlorperazine (Compazine®) can also block
dopamine in the brain and cause parkinsonism. Tetrabenazine (Xenazine®), a
drug used to treat certain movement disorders, can deplete brain dopamine
and cause parkinsonism. Certain cardiac medications, including amiodarone
(Cordarone®) and calcium channel blockers, may induce parkinsonism.
When these drugs are stopped, the dopamine system returns to normal and
usually all of the features of parkinsonism reverse. If a person who already
has Parkinson’s disease takes one of the drugs mentioned above, the PD
symptoms may worsen.
Because so many drugs have an impact on the dopamine system, it is

important to list all medications (including over-the-counter drugs and
vitamins) when visiting the neurologist.
What are the motor signs of Parkinson’s?

The diagnosis of Parkinson’s does not come from a test, but instead requires a
careful medical history and a physical examination to detect the cardinal signs
of the disease, including:
Resting Tremor
In the early stages of the disease, about 70 percent of people experience a
slight tremor in the hand or foot on one side of the body, or less commonly
in the jaw or face. A typical onset is tremor in one finger. The tremor consists
of a shaking or oscillating movement, and usually appears when a person’s
muscles are relaxed, or at rest, hence the term “resting tremor.” The affected
body part trembles when it is not performing an action. Typically, the fingers
or hand will tremble when folded in the lap, or when the arm is held loosely at
the side, i.e., when the limb is at rest. The tremor usually ceases when a person
begins an action. Some people with PD have noticed that they can stop a hand
tremor by keeping the hand in motion or in a flexed grip. The tremor of PD
can be exacerbated by stress or excitement, sometimes attracting unwanted
notice. The tremor often spreads to the other side of the body as the disease
progresses, but usually remains most apparent on the initially affected side.
Although tremor is the most noticeable outward sign of the disease, not all
people with PD will develop tremor.
Bradykinesia
Bradykinesia means “slow movement.” A defining feature of Parkinson’s, brady-
kinesia also describes a general reduction of spontaneous movement, which can
give the appearance of abnormal stillness and a decrease in facial expressivity.
Bradykinesia causes difficulty with repetitive movements, such as finger

tapping. Due to bradykinesia, a person with Parkinson’s may have difficulty
performing everyday functions, such as buttoning a shirt, cutting food or
brushing his or her teeth. People who experience bradykinesia may walk with
short, shuffling steps. The reduction in movement and the limited range of
movement caused by bradykinesia can affect a person’s speech, which may
become quieter and less distinct as Parkinson’s progresses.
Rigidity
Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles
normally stretch when they move, and then relax when they are at rest. In
Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and
does not relax, sometimes contributing to a decreased range of motion.
People with PD most commonly experience tightness of the neck, shoulder and
leg. A person with rigidity and bradykinesia tends to not swing his or her arms
when walking. Rigidity can be uncomfortable or even painful.
Postural Instability
One of the most important signs of Parkinson’s is postural instability, a
tendency to be unstable when standing upright. A person with postural
instability has lost some of the reflexes needed for maintaining an upright
posture, and may topple backwards if jostled even slightly. Some develop a
dangerous tendency to sway backwards when rising from a chair, standing or
turning. This problem is called retropulsion and may result in a backwards fall.
People with balance problems may have particular difficulty when pivoting or
making turns or quick movements.
Doctors test postural stability by using the “pull test.” During this test, the
neurologist gives a moderately forceful backwards tug on the standing
individual and observes how well the person recovers. The normal response is
a quick backwards step to prevent a fall; but many people with Parkinson’s are
unable to recover, and would tumble backwards if the neurologist were not
right there to catch him or her.
Secondary Motor Symptoms

In addition to the cardinal signs of Parkinson’s, there are many other motor
symptoms associated with the disease including:
• Freezing of gait is an important sign of PD that is not explained by rigidity
or bradykinesia. People who experience freezing will normally hesitate before
stepping forward. They feel as if their feet are glued to the floor. Often,
freezing is temporary, and a person can enter a normal stride once he or she
gets past the first step. Freezing can occur in very specific situations, such as
when starting to walk, when pivoting, when crossing a threshold or doorway,
and when approaching a chair. For reasons unknown, freezing rarely happens
on stairs. Various types of cues, such as an exaggerated first step, can help
with freezing. Some individuals have severe freezing, in which they simply
cannot take a step. Freezing is a potentially serious problem in Parkinson’s
disease, as it may increase a person’s risk of falling forward.
• Micrographia is the name for a shrinkage in handwriting that progresses
the more a person with Parkinson’s writes. This occurs as a result of
bradykinesia, which causes difficulty with repetitive actions.
• Drooling and excess saliva result from reduced swallowing movements.
• The mask-like expression found in PD, meaning a person’s face may appear
less expressive than usual, can occur because of decreased unconscious
facial movements.
• The flexed posture of PD may result from a combination of rigidity
and bradykinesia.
• Some people with Parkinson’s experience movements that are too quick, not
too slow. These unwanted accelerations are especially troublesome in speech
and movement. People with excessively fast speech, tachyphemia, produce a
rapid stammering that is hard to understand. Those who experience festina-
tion, an uncontrollable acceleration in gait, may be at increased risk for falls.
Do Parkinson’s symptoms affect one or both sides of the body?

By definition, Parkinson’s is a progressive disease. Although some people
with Parkinson’s only have symptoms on one side of the body for many years,
eventually the symptoms begin on the other side. Symptoms on the other side
of the body often do not become as severe as symptoms on the initial side.
Can daily stress worsen Parkinson’s symptoms?

Stress means different things to different people and can arise from positive
and negative events. Celebrations and social outings are examples of positive
stressors. Injuries, conflicts, illnesses, operations, physical discomfort and sleep
deprivation are examples of unwelcome stressors.
Stress does not cause PD, but stress of any kind can briefly worsen its
symptoms. The increase in symptoms experienced during stressful situations is
temporary and will resolve after the stress is relieved.
Paradoxically, some people may experience temporary improvements in their

Parkinson’s symptoms during important emotional events. Some people may
surprise their family by doing especially well at a wedding or at the doctor’s
office when they are doing poorly at home.
What can a person with Parkinson’s do to avoid falling?

Falling is perhaps the most common and dangerous complication of PD as it
can lead to fractures or head injuries. Contributing factors to fall risk include
impaired balance, stooped posture, stiffness and slowness, gait freezing, lack
of awareness of one’s falling risk, fatigue and low blood pressure.
Many people with Parkinson’s have a dangerous tendency to sway backward

when they stand or turn, a problem called retropulsion. Others hesitate or
“freeze” when taking a first step through a narrow space, when attempting
to pivot or when approaching a target, such as a chair. Elevators, revolving
doors, and crowded situations are especially challenging for people who
experience freezing.
There are several ways to lessen the risk of falls. For example, sometimes a
simple medication change can help. Others may benefit from gait training.
Devices, such as canes and walkers, can be helpful for some people. Even
when a cane is unnecessary for balance, it sends a signal for crowds to allow
space for a person with PD. People with Parkinson’s should avoid climbing or
descending stairs while carrying packages in both hands. Certain treacherous
situations may require assistance: an inclined driveway, a crowded space, a

broken sidewalk, obstacles on the floor or an icy pavement. For those who tend
to sway backward, it is helpful to place the feet in a firm stance, and to use
walls or counters for support.
Download our fact sheet “Falls Prevention” at Parkinson.org/FactSheets.
Listen to our Substantial Matters Podcast Episode #18: Stall the Fall
at Parkinson.org/Podcast.
View our Parkinson’s Expert Briefing webinar: “Gait, Balance and
Falls in Parkinson’s Disease” with Terry Ellis and Becky G. Farley at
Parkinson.org/ExpertBriefings.
What are “wearing-off spells”?

“Wearing-off” is what happens when individual doses of anti-Parkinson
medications lose their long-lasting effect. In early PD, medications can work
so effectively and so smoothly that many people hardly notice their symptoms.
But with time, the duration of benefit following each dose begins to shorten.
Several hours after a dose of medication, tremor stiffness and other PD
symptoms may return.
For some, this experience is an inconvenience that can be relieved by taking an

extra dose of medication. For others, wearing-off spells are unpleasant and
disabling. Wearing-off spells may occur gradually and predictably, or they may
happen suddenly and unexpectedly. People with Parkinson’s who experience
them may develop a daily routine in which they cycle between “on” periods
and “off” periods: when they are “on,” their medications are working well and
they are more mobile, but when they go “off,” their medications have stopped
providing relief, and they are stiffer and slower.
Wearing-off motor fluctuations generally develop after five years of treatment

with anti-Parkinson medication. These episodes can sometimes be helped by
an extra dose of a dopamine agonist or levodopa, or by shortening the time
between doses. The addition of long-acting (“controlled release”) levodopa
(e.g., Sinemet CR or RytaryTM) or a COMT inhibitor can extend the medication
effect, and reduce wearing-off. Apomorphine (Apokyn®) is an injectable
dopamine agonist that works within minutes, and can help with sudden
wearing-off spells. In some people, these strategies may increase the likelihood
of experiencing dyskinesias.
Some people with Parkinson’s experience both wearing-off spells and

drug-induced dyskinesias. These individuals often require a complicated
medication schedule. People with these problems require close attention from
a Parkinson’s specialist who is knowledgeable about the many medications
available to treat the disease. In addition, neurosurgical procedures for
Parkinson’s can be very effective at reducing wearing-off and dyskinesias.
Learn more about Parkinson’s medications on page 28.
What are dyskinesias?

Dyskinesias are involuntary twisting or writhing movements caused by
dopamine medications: levodopa formulations and dopamine agonists.
Dyskinesias are a complication of medical treatment for PD, and not a direct
manifestation of the disease itself. These movements usually appear on the
side of the body that is most affected by Parkinson’s, and sometimes can
involve the neck, face or trunk.
Dyskinesias generally develop after five or more years of treatment with

levodopa and dopamine agonists. Long-acting Sinemet and COMT inhibitors
can worsen dyskinesias. In some individuals, dyskinesias are mild and hardly
noticeable. In others, they are dramatic movements that attract attention
and impair coordination and gait. Dyskinesias may be more worrisome to
care partners, family members and friends than they are for the person with
PD (who is coping with many other issues). However, dyskinesias may cause
fatigue and become painful for the individual with PD.
Dyskinesias can often be helped by medication adjustment, such as a

reduction in dopamine drugs or the addition of amantadine. For the right
person, deep brain stimulation may be very effective at reducing dyskinesias,
and can be considered if medication adjustment is not successful. Researchers
are currently looking at ways to prevent and lessen dyskinesias.
Do people with Parkinson’s have pain?

Painful sensations are a serious but under-recognized cause of distress
for people with Parkinson’s. At some point in the disease, nearly everyone
experiences pain. The potential causes of physical discomfort in people with
PD are numerous, and include cramping muscles, rigidity, arthritis, tendonitis,
aching due to poor posture, painful contractures resulting from prolonged
immobility, and painful sustained twisting or posturing, known as dystonia.
Some people with Parkinson’s experience uncomfortable throbbing, burning
or pulling sensations that seem to involve their inner organs, and occur when
their medications wear off. Headache, a common cause of pain in the general
population, is rare in Parkinson’s.
In most cases, it is possible to establish the cause of pain in people with

Parkinson’s disease by a careful description of the complaints and a thorough
neurological examination. If the pain involves a limb that assumes a twisted
posture, the likely cause is dystonia. If the pain involves a rigid or immobile
joint, such as the shoulder or the hip, the more likely cause is parkinsonian
rigidity or arthritis.
People who suffer from pain should take note of any relationship between
their discomfort and the Parkinson’s medication schedule. If the pain occurs
mostly when medication has worn off, it is most likely a manifestation of “off”
rigidity or “off” dystonia.
For the most part, pain in PD is treatable. Depending on the cause of the pain,
treatment may consist of adjustments in anti-Parkinson medication, physical
therapy, anti-inflammatory agents or other types of pain medication. For
severe dystonia, injections of the muscle relaxant botulinum toxin (BOTOX®,
Myobloc®, Xeomin®) may be dramatically effective. For pain that occurs in the
unmedicated “off” state, the best solution is to increase “on” periods through
medication adjustment. All individuals who experience persistent pain should
inform their neurologist.
Download our fact sheet “Pain in PD” at Parkinson.org/FactSheets.
View our Expert Briefing webinar: “Pain in PD” at Parkinson.org/ExpertBriefings.
How can cramping in the legs and toes be relieved?

Many people with Parkinson’s experience cramps in their legs and toes. Often
these symptoms occur at night and interfere with sleep. Sometimes, the
cramps cause the feet and toes to assume painfully forced or twisted postures,
known as dystonia. Dystonia usually occurs when medications have worn off,
which typically happens in the early morning. Early morning toe dystonia can
sometimes be resolved by walking. In most cases, the next dose of medication
will probably relieve the symptoms. For severe symptoms, a neurologist may
add an additional dose or drug (e.g., botulinum toxin) to help.
Non-motor Symptoms
What are non-motor symptoms of PD?
Most people with Parkinson’s experience non-motor symptoms, those that
do not involve movement, coordination, physical tasks or mobility. While a
person’s family and friends may not be able to see them, these “invisible”
symptoms can actually be more troublesome for some people than the motor
impairments of PD.
Many researchers believe that non-motor symptoms may precede motor

symptoms — and a Parkinson’s diagnosis — by years. The most recognizable
early symptoms include loss of sense of smell, constipation, REM behavior
disorder (a sleep disorder), mood disorders and neurogenic orthostatic
hypotension (low blood pressure when standing up). If a person has one or
more of these symptoms, it does not necessarily mean that individual will
develop PD, but these markers are helping scientists to better understand the
disease process.
In the following pages of this booklet, some of these important symptoms

will be discussed: sleep disturbances, constipation, bladder problems, sexual
problems, excessive saliva, weight loss or gain, vision and dental problems,
fatigue and loss of energy. Some people may also experience depression,
apathy, hallucinations, fear and anxiety. Others may have cognitive issues,
such as memory difficulties, slowed thinking, confusion and in some cases,
dementia. Additionally, medications can cause some side effects, such as
impulsive behaviors.
Are sleep disturbances related to Parkinson’s disease?

People with Parkinson’s often have difficulty sleeping due to nocturnal
tremors, physical discomfort related to stiffness or rigidity, inability to roll
over in bed, bladder problems, restlessness and painful dystonia. Many people
experience vivid dreams or hallucinations and act out violent nightmares,
a problem called “REM sleep disorder.” Scientists believe this problem may
precede a PD diagnosis by several years. Other individuals fall into a pattern of
sleeping too much during the day and then having insomnia at night, causing a
“sleep-wake reversal” pattern. Another pattern is the person with PD who falls
asleep easily at bedtime, but then awakens in a few hours, unable to return to
sleep for the duration of the night.
The importance of adequate sleep in Parkinson’s cannot be overstated. People

with PD with poor sleep quality or sleep deprivation find that their level of
motor function is poorer and their medications do not work as well. They may
experience more mobility problems, wearing-off and dyskinesias and may
experience intolerable daytime drowsiness, a concern for those who drive.
A discussion of sleep-related issues should be part of every visit to the

neurologist. In all cases, it is important not to overlook medical causes of poor
sleep, such as sleep apnea. Treatments for sleep disturbances typically aim to
make an individual more comfortable at night.
Tips for people with insomnia include:

• Stay away from stimulants, such as caffeine,
chocolate or alcohol in the evening.
• Avoid naps in the evening.
• Limit drinking fluids before bedtime to prevent
frequent awakenings to urinate.
Some people are helped by an extra dose of their anti-Parkinson medications

at bedtime or in the middle of the night, while others require a sleeping
medication. Vivid dreams and REM sleep disorder respond to medication.
Individuals who are taking sedatives may actually find that their sleep problems
worsen and so medication changes should be discussed with their doctors.

Download our fact sheet “Fatigue and Parkinson’s Disease”
at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinar: “Sleep and Parkinson’s”
at Parkinson.org/ExpertBriefings.
Listen to our Substantial Matters Podcast #28: Autonomic Problems
Order our resource book Sleep: A Mind Guide to Parkinson’s Disease
at Parkinson.org/Books.
Why is constipation a problem for some people with Parkinson’s?

Constipation is a common problem in Parkinson’s. It can be caused by slow
transit time through the bowels due to muscular inertia, medication effects
and diet. Lack of exercise and activity can cause or aggravate constipation.
In addition, some people with Parkinson’s disease experience difficulty with
defecation due to rigidity and slowness of the pelvic floor muscles.
The first step to solving constipation is to increase fiber and fluid intake.
For some people, this means a major dietary overhaul, which requires discipline
and support. Efforts to become more active will help constipation. Stool
softeners are also useful. Laxatives are available if conservative measures
do not work, but it is important to use these agents correctly under the
supervision of a physician.
Certain medications may be prescribed for constipation. In these cases people

with PD should avoid taking metoclopramide as it can worsen PD symptoms.
More aggressive measures, such as enemas, should not be used without
medical supervision.
For more information, download our fact sheet “Constipation and Other
Gastrointestinal Problems in PD” at Parkinson.org/FactSheets.
Do people with Parkinson’s experience bladder problems?

Urinary urgency and frequency are common bladder problems in PD.
Some describe being unable to hold their urine once they realize that they
have to empty their bladder. If they also have difficulty moving quickly to
a rest room, this can result in an accident. When these problems occur at
night, sleep can be interrupted.
The first step in addressing bladder control issues is to speak to a neurologist.

Some people will require a urological evaluation to assess the situation. In
men, for example, prostate disease is a common cause of bladder malfunction
that must be distinguished from Parkinson’s. Treatments may include a
change in the routines of fluid intake, avoidance of diuretics, bladder training,
medications and sometimes, protective padding.
For nighttime frequency, it is wise to omit fluid in the evening and to avoid
caffeine in any form. It is important to note that many of the medications
for incontinence may cause memory difficulties, a factor that needs to be
considered in people with Parkinson’s with cognitive problems.
For more information download our fact sheet “Urinary Problems in Parkinson’s
Disease” at Parkinson.org/FactSheets.
Are sexual problems common in people with Parkinson’s?

The evidence from research studies demonstrates that people with Parkinson’s
can enjoy and experience a fulfilling sexual relationship just as well as healthy
individuals. However, people with PD are prone to different types of sexual
problems. Men may experience difficulty achieving erections. Women complain
of vaginal dryness and inability to experience orgasm. Both men and women
may suffer from a loss of libido due to PD. Impaired bladder control due to
Parkinson’s can have an impact on sexual performance. In addition, depression,
common for people with PD, can increase sexual difficulties.
Many of these problems can be helped, so it is important to discuss these

issues with a neurologist. For example, there are now medications that can
improve erectile dysfunction. Testosterone treatments may improve libido in
women and men.
Parkinson’s is sometimes associated with hyperactive behaviors. In a minority

of individuals with Parkinson’s, medications such as dopamine agonists and
levodopa have caused inappropriate hypersexuality. This problem has a
potentially serious impact on the person with Parkinson’s and his or her life
partner, and must be brought to the attention of the neurologist.
Learn more about these side effects and medications on pages 30 and 31.
Why do people with PD have excessive saliva?

What can be done to address this problem?
Excessive saliva in people with Parkinson’s disease does not result from
increased saliva production. In fact, saliva production is decreased in PD.
Excessive salivation and drooling are caused by a lack of spontaneous
swallowing, which allows saliva to overflow, and by slowness of the tongue,
mouth and throat muscles. In addition, a flexed neck posture will cause saliva
to accumulate at the front of the mouth, which leads to drooling.
Medications for PD can reduce drooling by increasing the mobility of swallowing

muscles. Improved neck posture will help. Some people suck on sour candies to
trigger the swallowing reflex. If drooling persists, medications can be prescribed
to restrict saliva production and cause dry mouth, but these may have side
effects, such as memory impairment or constipation. Severe drooling can be
treated using salivary gland injections with botulinum toxin. Surgery has been
used for drooling in other conditions, but these measures are rarely necessary.
Is it true that Parkinson’s disease can cause dental problems?

Certain symptoms of Parkinson’s can complicate dental health for people living
with Parkinson’s. Motor symptoms such as tremor may make tooth brushing
and flossing more difficult. Since saliva production is actually reduced in PD,
this can lead to tooth decay or cavities. Dyskinesias, poor mobility, tremor and
swallowing difficulties may make visits to the dentist more challenging. Helpful
strategies include taking levodopa before dental appointments and scheduling
visits early in the morning to avoid long waiting times.
For more information, download our fact sheet “Dental Health and Parkinson’s
Disease” at Parkinson.org/FactSheets.
What vision changes do people with Parkinson’s

sometimes experience?
Some people with Parkinson’s notice that as the disease progresses, their
vision loses sharpness or becomes blurred, and they have trouble with dry
eyes. Some vision difficulties are related to changes in the movement of the
eyeball. These are motor symptoms, similar to other motor symptoms caused
by loss of dopamine neurons. Difficulties related to the eyes and vision often
progress alongside other PD symptoms. It may be helpful to see a neuro-
opthalmologist, a specialist either in opthalmology or neurology, who has
additional training in diagnosing and treating problems with the eyes and with
vision that are associated with PD and other neurological diseases.
Is low blood pressure and lightheadedness a problem

in Parkinson’s disease?
Neurogenic orthostatic hypotension (nOH), or low blood pressure, is a sharp
drop in blood pressure that happens when a person gets up from bed or from
a chair, causing dizziness or even loss of consciousness. Doctors define it as
a blood pressure drop of 20 millimeters of mercury (20 mm Hg) in systolic
blood pressure (the top number in a blood pressure reading), or a drop of
10 millimeters in diastolic blood pressure (the bottom number), within three
minutes after standing up. Both Parkinson’s itself, and the medications that
are used to treat it, can contribute to nOH. In addition, people with Parkinson’s
may be on other medications that affect blood pressure.
This condition can put people with Parkinson’s at risk of fainting, losing
balance, falling, and being injured. To reduce the risk of nOH, it is important
to avoid dehydration. People with PD should ask their doctor to identify
medications that may lower blood pressure, and see if a change in dose is
indicated. Also, avoid abrupt changes in position. Medicinal approaches may
include midodrine (ProAmatine®), fludrocortisone (Florinef®), pyridostigmine
(Mestinon®) or droxidopa (Northera®).
For more information, download our fact sheet “Neurogenic Orthostatic
Hypotension” at Parkinson.org/FactSheets.
Is depression a common problem in Parkinson’s disease?

At least 60 percent of people with Parkinson’s may experience mild or
moderate depressive symptoms at some point during the disease.
Mild depression causes feelings of sorrow, discouragement and passivity, which

may be temporary and normal reactions to the disappointments in everyday
life. At the other end of the spectrum, depression can cause an extreme state of
hopelessness, low self-esteem or the desire to harm oneself, coupled with severe
changes in behavior including insomnia, increase in or loss of appetite, loss of
interest in daily activities and social isolation. Some people with depression may
also experience feelings of anxiety or panic. In its most severe form, depression
can cause a wish to die, which, if untreated, may lead to suicide attempts.
When a person with PD experiences symptoms of depression, it is important

to bring these symptoms to the attention of a medical professional. Often,
depression can be lifted by an adjustment in medication. Diet, exercise, improved
sleep quality and re-engagement in daily routines can also help depression. Many
people can benefit from both therapy and antidepressants. There are effective
treatments that will not interact negatively with anti-Parkinson medications.
However, drugs used to treat depression in PD may differ from those used in
people without Parkinson’s. For pronounced or sustained symptoms, a physician
may recommend a consultation with a psychiatrist.
Download our fact sheet “Combatting Depression” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinar ”Depression and PD:
Treatment Options” at Parkinson.org/ExpertBriefings.
Request a copy of our resource book Mood: A Mind Guide to Parkinson’s Disease,
at Parkinson.org/Books.
What is the relationship between apathy and Parkinson’s?

Apathy is increasingly recognized as a common symptom of Parkinson’s
disease — affecting about 40 percent of people with Parkinson’s without
cognitive impairment and 60 percent of people with PD with cognitive
impairment. Older men with more severe PD symptoms are particularly likely
to experience apathy.
Apathy, similar to PD movement symptoms, is thought to result from a loss of

dopamine in the brain. It can develop before a PD diagnosis, or at any stage of
disease progression.
Overcoming apathy starts with self-awareness, being in the best possible

health, and ruling out other causes for feeling sluggish. There are no approved
medications to treat apathy, but some people with PD may benefit from
cholinesterase inhibitors (rivastigmine, etc.), stimulants, or certain types
of antidepressants.
Is dementia part of Parkinson’s?

Nearly all people with Parkinson’s will experience some degree of cognitive
change. Unfortunately, many people will eventually develop a mild form of
dementia that may impact their ability to function independently.
Those who develop dementia may experience slowed thought processes,

memory problems, difficulty concentrating, apathy and poor motivation, word-
finding difficulty or poor judgment. Some people have particular difficulty
with complicated tasks or tasks involving visual space, a potential issue in
driving. Studies suggest that dementia is more common in people who develop
Parkinson’s after age 60, or in people whose PD is characterized primarily
by slowness or bradykinesia. People with PD and dementia seem to obtain
less benefit from their anti-Parkinson medications, and are more likely to
experience sedation and hallucinations.
Cognitive problems can have a major impact on quality of life, and should be
discussed with a neurologist. For some people, reducing the dose of Parkinson’s
medications can help to improve mental clarity. Engaging in mental games and
problem-solving can help to exercise the mind. There are several medications
available to treat dementia, mainly borrowed from the Alzheimer’s treatment
trials. For example, rivastigmine tartrate (Exelon®) is approved for treatment
of mild to moderate Parkinson’s dementia. Because depression can sometimes

masquerade as dementia symptoms, it is important that people with
Parkinson’s with cognitive problems be carefully screened for depression, and
treated if necessary.
Download “Cognition in Parkinson’s “ at Parkinson.org/FactSheets.
Request a copy of our resource book Cognition: A Mind Guide to Parkinson’s
Disease, at Parkinson.org/Books.
View our Parkinson’s Expert Briefing webinar: “Cognition and PD:
What You’ve Always Wanted to Know But Were Too Afraid to Ask”
Listen to our Substantial Matters Podcast #27: More Than Movement:
Addressing Cognitive and Behavioral Challenges in Caring for PD
Do people with PD experience hallucinations?

Hallucinations are common in Parkinson’s and are usually considered a side
effect of dopamine medication. People with PD generally experience visual
hallucinations in the evening or at night, when visibility is reduced. Sometimes
a person with Parkinson’s will imagine small animals or children, perceive faces,
or have the impression of figures standing in his or her presence. In some cases,
the hallucinations are threatening or are part of a paranoid delusion. Most
people are aware that their hallucinations are a trick of the mind, but others
find them convincingly real.
People who experience hallucinations, vivid dreams or unusual ideas, should

inform their neurologist. These phenomena are likely to be induced by
medication, particularly by dopamine agonists, and can often be eliminated
by adjusting the dose. Reducing dopamine medication in the evening may
eliminate nighttime visions. Sometimes, hallucinations are persistent and
require treatment using an antipsychotic agent, such as pimavanserin
(Nuplazid®), quetiapine (Seroquel®), clozapine (Clozaril®) or medications called
acetylcholinesterase inhibitors.

View our video “Hallucination in Parkinson’s Disease” on the Parkinson’s
Foundation YouTube Channel.
Request a copy of our book Psychosis: A Mind Guide to Parkinson’s at
Parkinson.org/Books.
View our Parkinson’s Expert Briefing webinar: “Parkinson’s Disease Psychosis:
Hallucinations, Delusions and Paranoia” at Parkinson.org/ExpertBriefings.
Listen to our Substantial Matters Podcast #23: Hallucinations and Delusions
in Parkinson’s at Parkinson.org/Podcast.
Can Parkinson’s or its medications cause compulsive behaviors

such as gambling and shopping?
The reward system of the human brain is governed by dopamine, the same
chemical that is deficient in Parkinson’s. Because the medications for PD
stimulate the brain’s dopamine systems, some individuals develop addictive
and compulsive behaviors called impulse control disorders (ICDs).
The most common addictive behaviors triggered by excessive dopamine

include compulsive shopping, compulsive gambling, compulsive sexual urges
and binge eating. If unchecked, these behaviors can be costly.
These compulsive behaviors usually result from medication. Dopamine

agonists, such as pramipexole (Mirapex®), ropinirole (Requip®) or rotigotine
transdermal system (Neupro®), are most likely to cause compulsive behaviors,
but any compound that stimulates the dopamine system can provoke them.
If a person with PD develops an uncharacteristic change in behavior of this
type, it is important to immediately alert the neurologist, who can often
resolve the problem by reducing or changing a medication.
For more information, download our fact sheet “Impulse Control and PD”
27
chapter two
Treating
Parkinson’s
Finding a doctor
How can a person find a doctor who is knowledgeable
about Parkinson’s?
Finding the right physician is important. Treating Parkinson’s requires a team
approach involving not only the person living with Parkinson’s, but also family
members, the physician and other healthcare professionals. Every person has
different Parkinson’s issues, vulnerabilities and needs.
The Parkinson’s Foundation maintains that people with Parkinson’s are best
served by a movement disorder specialist who is an expert in all aspects of
the disease, knowledgeable regarding the full range of treatment options,
and familiar with the cutting edge of clinical and scientific research. The ideal
Parkinson’s physician is available to provide advice and care, and is responsive
during times of need.
Some people with Parkinson’s may not have a specialist in their immediate
geographic area. When a person cannot find a local expert, it may be
worthwhile to travel once or twice a year to see a specialist who can work
together with the local general neurologist to provide the best care possible.
To find a Parkinson’s specialist, a person can solicit recommendations from
other people living with PD, such as members of a local support group, or
can call his or her health care provider and ask for a list of specialists in
the covered network. The foundation also maintains a list of Parkinson’s
specialists around the US. Please call our Helpline at 800-4PD-INFO or email
[email protected] for assistance.
Download our fact sheet “Seeking Out a Specialist” at Parkinson.org/FactSheets.
Listen to our Substantial Matters Podcast #30: Team Care for PD:
Why It’s Important at Parkinson.org/Podcast.
How often should people with Parkinson’s see a doctor?

Most people with PD are advised to see their doctor every three to six
months, especially if they are taking anti-Parkinson medications. If a person is
experiencing problems with his or her condition or treatment, more frequent
visits may be warranted. Some people remain in regular contact with their
doctors by telephone, email or online patient portal. For people who urgently
need to speak with their physician or schedule a visit, the most direct method
of contact is the telephone.
Medications & Surgical Treatments

What are the treatment options for PD?
Parkinson’s is a very individualized disease and each person who lives with it
requires a unique treatment plan. Although researchers are attempting to
develop treatments that will slow down or reverse the disease, no such therapy
is currently proven to be clinically effective. The goal of treatment is to reduce
symptoms and to allow a person to function as normally, and with as few side
effects, as possible. Current treatment options include medications and surgery.
It is common for people to take a variety of medications — all at different doses
and times of the day — in order to manage the symptoms of the disease.
What medications are currently available to treat Parkinson’s?

There are many effective medications for Parkinson’s symptoms. The six major
categories, or classes, include: (i) levodopa, (ii) dopamine agonists, (iii) COMT
(catechol-O-methyl transferase) inhibitors, (iv) MAO (monoamine oxidase) B
inhibitors, (v) anticholinergics and (vi) other medications including amantadine
(Symmetrel®). Within each class of drug, there are many options. These are
listed on the following pages.
treating parkinson’s 29
Most Parkinson’s medications work by influencing dopamine, the brain

chemical that plays an important role in behavior, coordination and mobility.
Dopamine drugs are associated with potential side effects, including
nausea, drowsiness, low blood pressure, hallucinations, writhing movements
(dyskinesias) and compulsive behaviors.
For many people, the choice of medication is dictated by side effects and
tolerability. While the ideal medication program is simple, for some individuals,
the medication schedule can become quite complicated, with multiple agents
taken around the clock. The goal of treatment — to keep a person functioning
and enjoying life at the highest level — is the same at every stage of the
disease. It is important to note that medications work best when they are
taken on a regular schedule, and when combined with exercise, good nutrition
and adequate sleep.
Levodopa
The most potent medication for Parkinson’s is levodopa. Its development in
the late 1960s represents one of the most important breakthroughs in the
history of medicine. Plain levodopa produces nausea and vomiting. It is now
combined with carbidopa to prevent this side effect. The well-known combined
carbidopa/levodopa formulation is called Sinemet®.
There are many different preparations and strengths of carbidopa/levodopa,

including controlled release (Sinemet CR®), extended release (RytaryTM),
a formulation that dissolves in the mouth without water, called Parcopa®,
and a gel formulation of the drug called DuopaTM that requires a surgically-
placed tube. There is a combined formulation that includes the COMT inhibitor
entacapone, called Stalevo®.
It is important that people with PD are aware which levodopa preparation

they are taking because there are so many different pill sizes, strengths and
manufacturers. Be careful when renewing prescriptions at the pharmacy
because the accidental substitute of a different formulation may lead to
an overdosage or underdosage.
Carbidopa/levodopa remains the most effective drug for treating Parkinson’s.

Some people with PD have been reluctant to take it, believing it to be a
last resort. But most neurologists agree that delaying treatment too long
is unwise, and may put a person with PD at risk for falling. The decision
about when to start carbidopa/levodopa is different for every person with
Parkinson’s, and requires consideration of potential benefits, risks and the
availability of alternatives.
Dopamine Agonists
Dopamine agonists are drugs that stimulate the parts of the human brain
influenced by dopamine. In effect, the brain is tricked into thinking it is
receiving the dopamine it needs. In general, dopamine agonists are not
as potent as carbidopa/levodopa, and therefore are less likely to cause
dyskinesias. Dopamine agonists can be taken alone or in combination with
medications containing levodopa. The two most commonly prescribed oral
pill agonists in the US are pramipexole (Mirapex) and ropinirole (Requip).
A third, rotigotine transdermal system (Neupro®), is available in a patch form.
Bromocriptine (Parlodel® ) is available, but is less commonly used.
As a class, dopamine agonists may cause nausea, hallucinations, sedation

(including sudden sleepiness, called sleep attacks) and lightheadedness due to
low blood pressure, so it is important to start at a low dose, increase gradually
and be alert for side effects. In some people (in a recent study up to 14 percent),
these medications have also been linked with compulsive behaviors, such as
gambling and shopping.
Learn more about these side effects on pages 25 and 26.
One dopamine agonist, apomorphine (Apokyn), is a powerful and fast-acting

injectable medication that promptly relieves symptoms of PD within minutes,
but only provides 30 to 60 minutes of benefit. With training provided by the
Parkinson’s specialist, people with PD, spouses and family members can be
taught to administer the agent, using a pre-filled syringe system. Its main
advantage is its rapid effect. It is used for people who experience sudden
wearing-off spells when their Parkinson’s medication abruptly stops working,
leaving them unexpectedly immobile. Apomorphine may cause severe nausea,
and so people using this agent must take an antiemetic agent. In addition,
apomorphine can provoke dyskinesias and other side effects associated with
dopamine drugs.
COMT Inhibitors
COMT inhibitors such as entacapone (Comtan®) and tolcapone (Tasmar®)
represent the newest class of Parkinson’s medications. These agents have
no direct effect on PD symptoms, but are used to prolong the effect of
levodopa by blocking its metabolism. COMT inhibitors are used primarily to
help with the problem of wearing-off, in which the effect of levodopa becomes
short-lived. People who take Tasmar must have regular liver function blood
tests. Entacapone is not only a COMT inhibitor, but is also one of the main
ingredients in Stalevo.
MAO-B Inhibitors
The two MAO-B inhibitors — selegiline (also called deprenyl, with trade
names Eldepryl® and Zelapar®) and rasagiline (Azilect®) — block an enzyme
in the brain that breaks down levodopa. These drugs have a modest effect in
suppressing the symptoms of PD. They have been shown to delay the need for
Sinemet when prescribed in the earliest stage of Parkinson’s, and have been
approved for use in later stages of PD to boost the effects of Sinemet.
Amantadine
Generic amantadine medication is used for off-label treatment of Parkinson’s
dyskinesia. The only FDA approved extended-release amantadine treatment,
Gocovri™, was approved for treating Parkinson’s dyskinesia that occurs with
dopamine medication. Generic amantadine is a well tolerated drug, but its
potential side effect include dry mouth, constipation, bladder problem, ankle
swelling and skin rash.
Anticholinergics
Anticholinergics can be helpful for tremor and may ease dystonia associated
with wearing-off or peak-dose effect. They have little effect on other symptoms
of Parkinson’s. The drugs in this class include trihexyphenidyl (Artane®) and
benztropine mesylate (Cogentin®) among others. They do not act directly on
the dopaminergic system. Instead, they decrease the activity of acetylcholine, a
neurotransmitter that regulates movement. Potential adverse effects include
blurred vision, dry mouth, constipation and urinary retention. Older individuals
are susceptible to confusion and hallucinations on anticholinergics, so these
agents should be avoided in individuals over the age of 70.
Request a copy of our resource book: Medications at Parkinson.org/Books.
Download our fact sheets “Medications On Time, Every Time,” “Maximizing PD
Medications” and “Medications and Schedule” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinars: “Medication Side Effects,” and
“Maximizing PD Medications: Get the Most Out of Your Treatment Plan” at
Parkinson.org/ExpertBriefings.
Listen to Substantial Matters Podcast #6: New Levodopa Delivery Methods for
Parkinson’s at Parkinson.org/Podcast.
32
Medications Currently Approved

for Treatment of Parkinson’s Disease
CLASS/TYPE MEDICATION
L-DOPA Carbidopa/Levodopa (Sinemet®)

Carbidopa/Levodopa orally disintegrating tablet (Parcopa®)
Carbidopa/Levodopa controlled release (Sinemet CR®)
Carbidopa/Levodopa/Entacapone (Stalevo®)
Carbidopa/Levodopa Extended Release Capsules (RytaryTM)
Carbidopa/Levodopa Enteral Suspension (DuopaTM)
This is a gel formulation of the drug that requires a
surgically-placed tube.
Dopamine Apomorphine (Apokyn®)

Agonists Bromocriptine (Parlodel®)
Pramipexole (Mirapex®)
Pramipexole dihydrochloride extended-release (Mirapex ER®)
Ropinirole (Requip®)
Ropinirole extended-release tablets (Requip® XLTM)
Rotigotine transdermal system (Neupro®)
COMT Entacapone (Comtan®)

Inhibitors Tolcapone (Tasmar®)
MAO-B Rasagiline (Azilect®)

Inhibitors Selegiline or deprenyl (Eldepryl®)
Selegiline HCI orally disintegrating tablet (Zelapar®)
Safinamide (Xadago®)
Anticholinergics Benztropine mesylate (Cogentin®)

Procyclidine Not currently available in the US.
Trihexyphenidyl (Artane®)
Other Amantadine Extended Release (Gocovri®)

Droxidopa (NortheraTM)
Pimavanserin (NuplazidTM)
Rivastigmine tartrate (Exelon®)
More details on all of these medications can be found at Parkinson.org.

What drug should be used first?

Fifty years after its discovery, levodopa remains the most effective medication
for Parkinson’s disease, and the “gold standard” by which all treatments for
Parkinson’s are measured. It still remains uncertain whether levodopa has a
long-term effect on the biology of Parkinson’s, but there is no question that it
has increased the lifespan of and dramatically improved the quality of life for
millions of people worldwide.
Some experts advocate early treatment with levodopa because the drug is the
most effective at suppressing the symptoms of Parkinson’s. Others contend
that dopamine agonists are nearly as effective as levodopa in improving
quality of life, especially in the early stages of PD. Dopamine agonists appear
less likely to provoke fluctuations and dyskinesias, two long-term complications
of treating PD. Still others argue that the wearing-off spells and fluctuations
would occur anyway because they reflect the progression of disease.
Despite lively debates in medical literature, no viewpoint has been proven.

The argument that levodopa should be postponed as long as possible because
it only works for a limited period of time, is not valid.
A reasonable compromise adopted by many experts is to treat early-stage

Parkinson’s using milder medications, such as amantadine, dopamine agonists,
or MAO-B inhibitors, and to add levodopa later, if required for symptom
control. In people with PD older than 70 years, dopamine agonists can be
associated with hallucinations and sedation, so using levodopa as a first-line
drug is preferable in this group.
What is deep brain stimulation?

Deep brain stimulation (DBS), was developed in the 1990s and first approved by
the US Food and Drug Administration in 1997. DBS is now a standard treatment
that has been used successfully in tens of thousands of people. Although it is
certainly the most important therapeutic advance since the development of
levodopa, DBS is not for every person with Parkinson’s. It is most effective —
sometimes dramatically so — for individuals who experience disabling tremors,
wearing-off spells, slowness of movement and medication-induced dyskinesias.
During DBS, electrodes are inserted into a deep brain region, using MRI and
neurophysiological mapping to ensure accurate placement. DBS can be
directed to different parts of the brain, including the subthalamic nucleus,
globus pallidus and thalamus, all crucial regions for mobility and tremor
control. The choice of target depends upon a person’s symptoms.
DBS Targets
In recent years, the subthalamic nucleus has become the preferred target
in the majority of people with Parkinson’s. For those who have symptoms
on both sides of the body, the surgery must be performed on both sides of
the brain. A device called an implantable pulse generator or IPG (similar to a
pacemaker) is inserted under the collarbone to provide a continuous electrical
current to a part of the brain involved in motor function. After the surgery is
performed, the person must return to the medical center at regular intervals
for programming of the implanted device. Individuals are given a hand-held
device, similar to a television remote control, which allows them to check the
battery and to turn their device on or off. An IPG battery lasts for about three
to five years and is relatively easy to replace under local anesthesia.
Effects of DBS
As with medications, surgery for Parkinson’s is not a cure. But, when used on
eligible individuals, it is very effective in suppressing some symptoms, including
tremor, bradykinesia and rigidity. Wearing-off spells and dyskinesias can also
be significantly reduced. Some people with PD can decrease medication intake
by 50 percent or more. Unfortunately, surgery does not help balance or gait
freezing and has limited effects on speech or posture — all symptoms that
may worsen as the disease progresses.
Who is a candidate for DBS?
Not every person with Parkinson’s is a good candidate for surgery. The ideal
candidate is responsive to individual doses of levodopa but has reached a
stage associated with wearing-off spells or dyskinesias. The individual should
have no cognitive or emotional impairment and must be in good general
health. People with forms of parkinsonism that respond poorly to levodopa
or who experience cognitive or emotional difficulties, such as dementia,
depression, apathy or anxiety, will not benefit from surgery.
Surgery for PD is best performed at a center with established expertise in
these advanced techniques. The ideal center is one that has neurosurgeons
who are trained in DBS surgery and a dedicated team of personnel available
for screening, post-operative care and programming of the deep brain
stimulator. It is important that a person with PD who is considering surgery
be well-informed about the procedures and realistic in his or her expectations.
An effective support system of family or friends is essential to help the person
cope with the emotional demands of the surgery.
For more information, request your copy of our resource book:
Guide to Deep Brain Stimulation at Parkinson.org/Books.
Complementary & Alternative Therapies

What other therapies are available to a person with Parkinson’s?
A comprehensive and multi-disciplinary approach to health care can be very
beneficial at any stage of Parkinson’s.
Building a “healthcare team” involves taking advantage of not only the

expertise of a PD specialist, but also the help of a physical therapist,
occupational therapist, speech therapist, nutritionist, social worker and others.
Some people with PD may be able to find all of these professionals in one
practice or center, but many will have to explore their community’s resources.
Physical therapists can help a person to improve mobility, flexibility, muscle

strength, exercise tolerance and balance. For individuals who experience
difficulties turning in bed, arising from a chair, or exiting a car, physical therapy
can provide solutions. Physical therapists that are knowledgeable about PD
can teach techniques for coping with freezing and avoiding falls. In addition,
physical therapists can provide advice about assistive devices, such as canes or
walkers, if needed.
Download our fact sheet “Physical Therapy in PD” at Parkinson.org/FactSheets.
View Parkinson’s Expert Briefing webinar: “Physical Therapy & PD:
What You Need to Know” at Parkinson.org/ExpertBriefings.
Occupational therapists teach people alternative methods of performing

daily tasks that may pose a challenge, such as eating and dressing.
Occupational therapists can also evaluate a home and give suggestions to
make the home safer and easier to navigate. These tips may allow a person
with Parkinson’s to maintain a greater level of independence.
Download our fact sheet “Occupational Therapy” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinar: “Occupational Therapy and
Parkinson’s: Tips for Healthy Living” at Parkinson.org/ExpertBriefings.
Speech therapists can help with vocal training programs including certain
programs that are tailored to the needs of people with Parkinson’s. For
example, the Lee Silverman Voice Treatment® (LSVT®) technique is aimed
specifically at people with Parkinson’s to improve vocal loudness and

articulation. Speech therapists are also skilled in the evaluation and treatment
of swallowing difficulties in PD.
Request a copy of our resource book: Speech and Swallowing at
Parkinson.org/Books.
View our Parkinson’s Expert Briefing webinar: “Improving Communication in
Parkinson’s Disease: One Voice, Many Listeners” at Parkinson.org/ExpertBriefings.
Other people may benefit from consultation with nutritionists, social
workers, psychologists or psychiatrists. A neurologist may be able to provide
recommendations and referrals for therapy. Insurance may not cover all
forms of therapy; sometimes supporting letters of necessity from the treating
physicians are needed. It is important that all professionals collaborating in the
care of a person with Parkinson’s be aware of each other and communicate
regularly, especially with regard to the treatments that each is prescribing.
Do acupuncture, hypnosis or massage therapies have a role

in treating PD?
Acupuncture involves the insertion of very fine needles into the skin at
particular points on the body. Hypnosis is aimed at inducing a psychological
state of relaxation and responsiveness that can be directed towards
controlling muscles. Massage therapy is used for muscle relaxation.
None of these techniques have been rigorously tested in treating PD. There
is no scientific evidence that acupuncture, hypnosis or massage therapies
have any effect on the disease itself, although people with PD report they can
temporarily provide relief from aching muscles and certain PD symptoms.
Alternative physical activities, such as yoga and Tai Chi, encourage disciplined
movements and rigorous posture, and like conventional forms of exercise,
appear to be of benefit to individuals who can practice them.
Is there a role for vitamins or natural supplements in

treating Parkinson’s?
Many people add vitamins and other compounds to their treatment regimen.
They may use antioxidants such as vitamin B6, vitamin E, vitamin C, Coenzyme
Q10, glutathione and others, in the hope of slowing the disease. Others take
vitamin D, which is essential for bone health. Some research has indicated that
vitamin D levels are low in people with PD.
There is no research yet to demonstrate that these substances stop or slow

the progression of PD. Recent well-designed clinical trials have concluded that
vitamin E, coenzyme Q10 and creatine do not slow the progression of disability
in PD. While most of these substances are not harmful and will not interfere
with the absorption of the various anti-Parkinson medications, the treating
doctor should be kept informed of all of the supplements a person is taking.
Exercise & Nutrition

How is exercise beneficial for people with Parkinson’s disease?
Parkinson’s is a disease of stiffness, slowness, fatigue and weakness. Because
of this, many people find exercise challenging and may not want to exercise for
fear of becoming exhausted. But research shows that certain types of physical
activity can ease symptoms. For example, exercise or physical therapy can
help to maintain and improve mobility, strength, flexibility and balance. Other
studies have shown that exercise provides benefits that complement the
effects of medications. Exercise may also help to ease many of the disease’s
secondary symptoms, such as depression and constipation.
People who stretch, bend and move about during the day achieve consistent
results. New research suggests that intense, complex exercise (walking on a
treadmill or running) also has benefits for PD symptoms.
Popular options for exercise include dancing, Tai Chi, walking, boxing and
swimming. Individuals with gait difficulties or balance impairment can be
helped by performing specific exercises. A physical therapist can help design
an appropriate program. Strategies to break out of freezing episodes and
to prevent backwards falling can be developed. There are also many classes,
books and videos on exercises for PD. In order to have physical therapy covered
under Medicare or insurance, a doctor must “prescribe” it. It is essential to
practice physical activities after a course of therapy is finished.
Download our fact sheet “Exercise and Parkinson’s” at Parkinson.org/FactSheets.
Request your copy of our resource book Fitness Counts at Parkinson.org/Books.
Do people with Parkinson’s need to follow a special diet?

A balanced, nutritious diet is important in Parkinson’s. Unfortunately, many
people with Parkinson’s have a poor appetite and inadequate food intake.
Medications sometimes cause nausea or reduce the wish to eat. Poor appetite
can lead to undesirable weight loss. In addition, problems with swallowing can
cause a person to have difficulty eating nutritious foods, such as vegetables,
which can impact nutritional intake.
The best plan is to maintain a full diet with all of the daily nutritional
requirements. Certain habits may help with this goal. Some people who take
levodopa, for example, may find that a protein meal will inactivate a dose of
medication. Limiting protein intake or staggering the medication dosing to
avoid conflicts with meals can help solve this problem.
Other tips:
• To be most effective, levodopa preparations should be taken up to an hour
before meal- times on an empty stomach or with a dry cracker or toast.
• To prevent constipation, it’s important to eat fresh fruits and vegetables,
which provide fiber, drink plenty of fluids and get regular exercise.
• For people who experience difficulty swallowing, a diet of soft foods that
supplements nutrients may be recommended. Adding thickening agents to
thin liquids may also be recommended.
• People with Parkinson’s who progressively lose weight for no clear reason
should bring this symptom to the attention of their physician, and undergo
a thorough medical evaluation.
Download our fact sheet “Nutrition and Parkinson’s” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinar: “Nutrition and Parkinson’s Disease”
Listed to our Substantial Matters podcast #4: The Importance of Good Nutrition
for People with Parkinson’s at Parkinson.org/Podcast.
39
chapter three
Living with
Parkinson’s
Finding Support
How can people with Parkinson’s find a local support group?
Support groups can provide a place to share similar experiences and tips for
living with Parkinson’s. Some groups provide general support, while others
focus on special populations, such as those living with young onset PD or care
partners. Support groups may provide educational programs and organize
members to raise awareness on a local level.
The Parkinson’s Foundation keeps an unpublished listing of Parkinson’s

support groups to share with callers to its Helpline. Individuals looking for
a referral to a nearby group can call us at 800-4PD-INFO or email us at
[email protected]. Individuals looking to add their group to this list
are also invited to contact the Helpline with group information. If a group
is not available in your community, there are several Internet-based groups
that may be helpful.
For more information on support groups, download our Support Group Guide
at Parkinson.org/Library.
Staying Independent
Is special equipment recommended to help people with Parkinson’s?
For those who have problems with mobility and balance, a walking device, such
as a cane or walker, can help to avoid a fall. These devices provide support and
serve as a reminder to step deliberately. There are many models of walkers
available, differing in the number and size of wheels, the type of brakes, the
amount of support, seats and baskets. Some walkers have a laser beam
display to “cue” stepping for people who experience freezing.
For people who develop severe balance impairment, sometimes either a

wheelchair or motorized scooter is best. Physical and occupational therapists
can provide training on how to use such equipment properly.
If hand coordination becomes difficult, special utensils that facilitate eating

and other daily activities can be of assistance. There are furnishings and
devices, such as shower chairs, that are helpful in the bathroom. Some people
who have difficulty climbing stairs find electric stair climbers to be beneficial.
Voice amplifiers can help the problem of inaudible speech. Adaptive devices to
enable people with PD to use computer equipment are also available.
Before buying an expensive piece of equipment, a person should talk with

his or her neurologist for recommendations and obtain a referral to the
appropriate therapist, who can help determine the best choice of device and
give instruction on using it properly. For expensive items, a prescription from
the neurologist stating that it is required may help to have the costs covered
by Medicare or private insurance.
For information on the role that service dogs can play in making life easier
for people with PD, download our fact sheet “Service Dogs for PD” at
Parkinson.org/FactSheets.
Is there financial assistance available for people with Parkinson’s?

There are programs that will help to offset the financial difficulties presented
by Parkinson’s — such as the costs of home adjustments, medical equipment
and medications.
The Melvin Weinstein Parkinson’s Foundation (MWPF), is available for

individuals who meet certain eligibility requirements. For these individuals,
the fund offers one time assistance for such costs as home health care and
the purchase of medical equipment, such as wheelchairs, walkers and canes.
For more information, visit www.mwpf.org or call 757-313-9729.
living with parkinson’s 41
Another suggestion is to find the closest Area Agency on Aging office through
the Eldercare Locator Service at www.eldercare.gov or 800- 677-1116. This
resource links seniors to financial aid and related programs. Such programs
include assisting individuals with referrals and/or applications for food
stamps, Meals-on-Wheels, Medicaid/Medicare, Low Income Energy Assistance
programs, low cost senior housing options and more.
Lastly, several pharmaceutical companies offer programs to help eligible

applicants reduce medication costs. Visit Parkinson.org to see a list of
current programs.
Should a person with PD drive?

Driving poses a difficult issue for people with PD and their families. Most states
do not have guidelines regarding Parkinson’s and driving. However, people with
PD must take extra caution as they may have slowed reaction times, impaired
ability to process visual and spatial information, or problems with judgment.
A fender bender, or a tendency to veer across lanes or around corners, calls
into question a person’s ability to judge distances accurately. People with
unpredictable wearing-off spells may find themselves suddenly unable to move
behind the wheel. Others may become sleepy while driving due to medication
effects or to sleep deprivation from insomnia. Rarely, people with PD who
experience daytime sleepiness can have “sleep attacks,” without warning.
The general rule is that when family members feel concerned about their loved
one’s driving, it is time to evaluate the situation. Doctors are not required
to report the Parkinson’s diagnosis to motor vehicle bureaus, but they can
insist on a driving test. If everyone agrees that an individual with Parkinson’s
is a potential driving risk, it is time to turn over the keys to a spouse, family
member or friend.
For more information, download our fact sheet “Driving and Parkinson’s” at
Parkinson.org/FactSheets.
Is it okay to drink alcohol?

Moderate consumption of alcohol (an occasional cocktail or a glass of beer or
wine) should be acceptable for people with Parkinson’s, as long as they do not
have other medical conditions or take medications that prohibit alcohol use.
The Family & Parkinson’s

What role can family members play?
Family members and care partners play an important role in PD. They can
provide support and advice; take on new household tasks such as paying bills
and attending doctor appointments; and may help with personal care tasks,
such as helping a loved one to dress and shower.
It is important for family members to recognize the sometimes unpredictable

nature of Parkinson’s. By staying alert and offering help when it is needed,
family members can find the right balance between protecting the person with
PD and encouraging independence.
Some people may no longer wish to perform tasks of daily living and may
actually be suffering from depression and apathy. It is important that this
be recognized as separate from the physical challenges of Parkinson’s and
discussed with the neurologist, since medication or therapy may be necessary.
For more information, download fact sheets “Adding Family, Friends &
Volunteers to Your Caregiving” and “How to Talk With Your Family About
Parkinson’s” at Parkinson.org/FactSheets.
living with parkinson’s 43
Are there resources to assist family members of people

with Parkinson’s?
There are several organizations that provide education and resources to care
partners and loved ones of people with Parkinson’s. For instance, the Caregiver
Action Network (CAN), the Family Caregiver Alliance (FCA) and the Well
Spouse Association (WSA), exist to support care partners to people living with
various diseases, including PD.
The Parkinson’s Foundation and other PD organizations provide educational

events and materials for care partners. In addition, many community support
groups either include care partners and family members, or may have a
separate group available.
Download our fact sheets “Secondary Caregiving” and “Adding Family,
Friends & Volunteers to Your Caregiving” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinars: “Caring for a Person with
Late Stage Parkinson’s,” ”Caregiving and Parkinson’s: Laying the Groundwork
for the Road Ahead” and “Coping Skills for Parkinson’s Care Partners”
Request a copy of our resource book Caring and Coping at Parkinson.org/Books.
44
chapter four
Parkinson’s
Research:
chapter xx
Title
The Future
Drug Discovery & Development
Are there any new drugs on the horizon for Parkinson’s?
Research into new treatments for Parkinson’s is part of the fight against this
disease. There are always several promising new pharmaceutical compounds
“in the pipeline” of discovery or development. New surgical approaches and
gene therapies for Parkinson’s are also currently being tested. Unfortunately,
it takes a very long time for new therapies to go through the testing and
approval process, and not all novel treatments prove successful.
Why does it take so long for a new drug to become available?

The route from the laboratory to the medicine cabinet is long and complicated.
In the US, the Food and Drug Administration (FDA) carefully oversees the
development, testing, labeling and marketing of all pharmaceutical products.
Medications start with development in a laboratory. If a compound appears

to be promising, it is then tested in animals to determine its effectiveness and
safety. Only after a new medication passes all tests of animal safety, may
a study sponsor apply to begin human studies, called clinical trials. Carefully
designed, large-scale trials involving hundreds of people are then conducted to
measure the effectiveness of a PD drug.
45
The Research Process begins with development of a new compound in the lab,
continues with the three phases of clinical research, and concludes with approval by the
US Food and Drug Adminiﬆration
Average 14 years from discovery to drug ﬆore
RESEARCH IDEAS
CLINICAL TRIALS
SCIENTIFIC RESEARCH NEW
PHASE I, II, III, IV
Laboratory Studies TREATMENTS
Studies in Humans
6.2 Years 1.5 Years
6.5 Years
FDA Approval
An essential aspect of clinical trial design is the process of randomization.

Participants are randomly assigned to receive either the medication being
tested or a placebo (a non-active substance designed to look like the
medication). Called a double blind study, neither the investigator conducting
the trial nor the participant is allowed to know if the medication is real or
placebo until the study is completed. This way, both the investigator and the
person with PD are blinded as to the treatment assignment, which is the only
way to ensure an unbiased evaluation of a drug.
Sometimes, the FDA requires more extensive drug testing than the
manufacturer anticipated, which can delay the process by years. For people
who live with Parkinson’s, the pace of new advances in treatment is never
fast enough. But safety is a top priority, and the FDA’s painstaking efforts to
ensure that a new treatment is effective and safe are justified.
NIH Clinical Research Trials and You, found at www.nih.gov,
is an online resource to help people learn more about clinical trials,
why they matter and how to participate.
What is neuroprotection?
Neuroprotection is the term used to describe treatment that may slow down,
stop or reverse the progression of a brain disease by repairing brain cells and
preventing them from being lost, or encouraging new ones to grow. Although
researchers are attempting to develop neuroprotective agents for Parkinson’s
disease, no such therapy is currently proven to be clinically effective.
Selegiline and rasagiline have been studied for neuroprotective effects but
the evidence to date has not been conclusive. Some people with PD have used
over-the-counter antioxidant vitamins, such as vitamin C, with the goal of
slowing the progression of PD. Recent studies of coenzyme Q10 and creatine
conducted by the National Institutes of Health (NIH) found low likelihood that
the substances delay the progression of Parkinson’s. There is also interest
in the potential of exercise to be neuroprotective for PD. Researchers are
studying forms of exercise (dance, running, walking) to learn more.
Scientists hope to make progress toward neuroprotection as they learn more

about the causes of cell death in PD.
For information on neuroprotection trials that are enrolling participants,
visit www.clinicaltrials.gov.
Playing a Part in Research

Should I consider participating in a clinical research study?
Depending on symptoms and general health, a person with Parkinson’s and his
or her family members without Parkinson’s should think about getting involved
in clinical research. Researchers need volunteers to help solve the unanswered
questions about Parkinson’s and to develop new treatments. All of the drugs
currently used for treating Parkinson’s are available only because other people
volunteered to help researchers develop them.
Clinical research in Parkinson’s disease takes many forms. A drug trial is

designed to test new treatments, and will require participants to follow a
careful protocol and make several visits to the study center. The trials of new
surgical techniques for PD are even more complicated, with extensive pre-
operative screening and testing, as well as long term follow-up. Others, such as
genetic studies, require only a single visit during which the researchers collect
information and obtain a blood sample. All of these types of research allow the
discovery of new ideas and information, and advance our understanding
of Parkinson’s.
In the majority of trials, the medical care and study medication is provided to
participants for free. People who participate in clinical research tend to receive
closer attention and more frequent evaluations than people with PD in routine
clinical practice. Participating in clinical trials provides people with Parkinson’s
with the opportunity to receive excellent care while helping to bring drugs to
the market more quickly.
Parkinson’s Research: The Future 47
While clinical study participation is important, individuals should make an

informed decision by educating themselves first and asking the right questions
of trial coordinators. Participants in clinical research are carefully protected
from harm by FDA protocol, research ethics and careful monitoring by an
Institutional Review Board (IRB) at each study site. An IRB is a committee of
physicians, statisticians, researchers, advocates and others. The IRB ensures
that a trial is ethical, the rights of participants are protected, and medical
information is safe-guarded. All trials in the US must be approved by an IRB
before they can begin to recruit participants. A person who is interested in
participating in research should speak to his or her neurologist.
For more information, request a copy of our educational booklet
Getting Involved in Parkinson’s Research, a guide to making a decision
about research participation at Parkinson.org/Books.
Can I donate my brain to research?

Studying the post-mortem brain provides scientists with the opportunity
to better understand Parkinson’s. People with Parkinson’s, and sometimes
individuals without the disease, can choose to donate their brains to
Parkinson’s research.
Brain donation is a lasting contribution to science. Yet, for some people it may
bring up many difficult questions and concerns.
Additionally, finding the right donation program is not always easy. There are
several programs that accept donations from people with Parkinson’s, but
each has different requirements regarding eligibility and participation.
If a person with Parkinson’s decides that brain donation is the right decision,
it is best for him or her to contact the closest brain donation program to ask
more questions. A list of local brain donation programs may be available from
an individual’s treating neurologist. Call the Parkinson’s Foundation Helpline
at 800-4PD-INFO for a list of organizations that accept brain tissue and their
program information.
For more information, download our fact sheet “Brain Donation”
Are there other ways to get involved?

In addition to participating in trials and considering brain donation, some
people with Parkinson’s are passionate about advocating for PD research.
These individuals may educate the community about clinical studies or work
to improve the development of new therapies. Others may work on a local or
national level to advocate for funding of PD research.
The Parkinson’s Foundation Parkinson’s Advocates in Research (PAIR) program is

a network of over 300 research advocates from 40 states (as of 2016) who work
to bring educated consumer voices to important issues in Parkinson’s therapy
development. This growing network is actively collaborating with scientists,
government agencies and private industry to change the role that people with
Parkinson’s play in the design and implementation of PD research and programs.
All of our research advocates have participated in a three-day training program,

called the Learning Institute, which offers course-work focusing on the science
of Parkinson’s and strategies for influencing research decision- making. Research
advocates continue to grow their advocacy knowledge and connections through
continuing education opportunities and tools provided by the foundation.
If you would like to learn more about this program or if you would like to
speak with us about partnering with a research advocate at your institution,
clinical study or support group, please visit Parkinson.org/PAIR.
Finding the Cure

What are the future strategies for finding better treatments
and a cure for PD?
Many scientists believe that the cure for Parkinson’s will come from a deeper
understanding of what causes the disease. What is the reason that dopamine
neurons begin to degenerate and die? If the cause of the neurodegeneration
can be identified, perhaps a specific treatment can be developed to slow, stop
or reverse its process.
Future treatment strategies may include the delivery of substances or genetic

material directly to the brain. They may involve replacing neurons. However,
these techniques are in the earliest stages of development.
For people living with Parkinson’s disease and their families, the progress
is always too slow. But there are reasons to be optimistic. It is anticipated
that many scientific advances will be translated into benefits for people
with Parkinson’s, and so the hope for a cure is linked with true promise and
great optimism.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s
disease by improving care and advancing research toward a cure.
In everything we do, we build on the energy, experience and passion
of our global Parkinson’s community. A wealth of information about
Parkinson’s and about our activities and resources is available on our
website, Parkinson.org.
Your feedback matters!

We’d like to know what you think of our publications and programs.
Please take a few moments to fill out our online feedback form.
Your answers will be used to improve our resources and will benefit
people with Parkinson’s, caregivers, families and others in the
Parkinson’s community. Thank you for your help.
Online form: Parkinson.org/Feedback
Your generosity makes this publication possible.

The Parkinson’s Foundation is proud to provide this booklet and other
educational materials at no cost to people around the globe. If you found
this book helpful, please consider a gift so that we may continue to fight
Parkinson’s on all fronts: funding innovative research, providing support
services and offering educational materials such as this publication.
Thank you for your support.
Donate online: Parkinson.org/Donate
Donate by mail: Parkinson’s Foundation
200 SE 1st St, Suite 800
Miami, FL 33131
Donate by phone: 1-800-4PD-INFO (473-4636)
Tax ID: 13-1866796
The information contained in this publication is provided for informational and educational
parkinson’s foundation resources purposes only and should not be construed to be a diagnosis, treatment, regimen or any
You can find more helpful tips for managing other healthcare advice or instruction. The reader should seek his or her own medical or
other professional advice, which this publication is not intended to replace or supplement.
Parkinson’s in the books, fact sheets, videos and The Parkinson’s Foundation disclaims any responsibility and liability of any kind in
newsletters in our PD library at Parkinson.org/Library. connection with the reader,s use of the information contained herein. ©2018
A Guide to Parkinson’s Disease
200 SE 1st Street, Suite 800 helpline: parkinson. org

Miami, Florida 33131 800. 4PD.INFO (473.4636)
1359 Broadway, Suite 1509 [email protected]
New York, New York 10018

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Parkinsons Disease Frequently Asked Questions

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A Guide to Parkinson’s Disease

200 SE 1st Street, Suite 800 helpline: parkinson. org

Your feedback matters!

Your generosity makes this publication possible.

People affected by Parkinson’s disease (PD) — those living

This book has been made possible through the

Parkinson’s was originally described in 1817 by James Parkinson in his Essay on

Primary motor signs of Parkinson’s disease include tremor, slowness, rigidity

How many people are currently living with Parkinson’s disease?

What is the average age of PD diagnosis?

Can Parkinson’s be cured?

What is Parkinson’s versus parkinsonism?

Classic (idiopathic) Parkinson’s is the most common and most treatable

How is Parkinson’s diagnosed?

To diagnose Parkinson’s, the physician takes a careful neurological history and

Very mild cases of PD can be difficult to confirm, even by an experienced

The Parkinson’s Foundation recommends that a person with symptoms

Learn more about how to find a Parkinson’s specialist on page 28.

What are the stages of Parkinson’s?

With moderate Parkinson’s, movement symptoms occur on both sides of the

How quickly does Parkinson’s progress?

There are rating scales that a physician may use to understand PD

What Happens in Parkinson’s?

When a person has Parkinson’s, the dopamine- producing cells begin to

What causes Parkinson’s disease?

Scientists have identified aging as an important risk factor; there is a two to

Because genetic forms of a disease can be studied in great detail in the

For more information:

Some studies have demonstrated that prolonged occupational exposure to

It is noted that a simple exposure to an environmental toxin is never enough to

Can a bad fall, accident or shock cause Parkinson’s disease?

Motor Symptoms & Complications

Drugs that can cause parkinsonism include neuroleptic tranquilizers, sometimes

Because so many drugs have an impact on the dopamine system, it is

What are the motor signs of Parkinson’s?

Bradykinesia causes difficulty with repetitive movements, such as finger

Secondary Motor Symptoms

Do Parkinson’s symptoms affect one or both sides of the body?

Can daily stress worsen Parkinson’s symptoms?

Paradoxically, some people may experience temporary improvements in their

What can a person with Parkinson’s do to avoid falling?

Many people with Parkinson’s have a dangerous tendency to sway backward

situations may require assistance: an inclined driveway, a crowded space, a

What are “wearing-off spells”?

For some, this experience is an inconvenience that can be relieved by taking an

Wearing-off motor fluctuations generally develop after five years of treatment

Some people with Parkinson’s experience both wearing-off spells and

Learn more about Parkinson’s medications on page 28.

What are dyskinesias?

Dyskinesias generally develop after five or more years of treatment with

Dyskinesias can often be helped by medication adjustment, such as a

Do people with Parkinson’s have pain?

In most cases, it is possible to establish the cause of pain in people with

How can cramping in the legs and toes be relieved?

Many researchers believe that non-motor symptoms may precede motor

In the following pages of this booklet, some of these important symptoms

Are sleep disturbances related to Parkinson’s disease?

The importance of adequate sleep in Parkinson’s cannot be overstated. People

A discussion of sleep-related issues should be part of every visit to the