Managing Parkinson’s

Mid-Stride
A TREATMENT GUIDE TO PARKINSON’S DISEASE
About this book
Glossary
Definitions for all words underlined in blue can be found in
the glossary starting on page 36. In addition, hovering over
glossary terms with your cursor will reveal the definition.
A comprehensive Parkinson’s disease glossary can be found
at www.parkinson.org/glossary.

Index
An index of key words and topics can be found on page 40.

Hyperlinks
In addition to glossary words underlined in blue, words underlined
in grey can be clicked to go directly to that page or link.

Tip Sheets
Certain pages include tip sheets with practical pointers for
managing motor fluctuations. You can also view and download
these in our PD library at www.parkinson.org/library.

Videos
Visit www.parkinson.org/videos for tips on how to
work with your doctor to manage motor fluctuations.

Navigation
Click on the home icon on any page to return to the
Table of Contents. The Contents items can also be
clicked to go directly to the beginning of that chapter.
 1

Every person’s Parkinson’s disease (PD) journey is unique.

No two people have exactly the same symptoms or
progression, let alone lifestyle and genetics. However,
it is common that once you begin a treatment regimen after
diagnosis, you can live life for a while with nearly complete
relief from symptoms and few side effects. Eventually, though,
after several years of being treated with levodopa, many
people with PD notice that controlling symptoms becomes
more difficult and requires more medication. At this point,
motor fluctuations (also called “on-off” fluctuations) may
begin to appear.
This book explains what motor fluctuations are, why these changes might
happen, and how to treat and cope with them. The information, tips, and
stories included here will provide answers, help you organize thoughts and
questions for your medical team, and remind you that you are not alone on
this Parkinson’s journey.
2

Contents

About
Parkinson’s
Disease PD Mid-Stride
5 7

Talking
Exercise about PD
26 29
 3

Non-Motor
Treatment Fluctuations
12 24

Appendix 34
Glossary 36
Index 40

Hope
31
4

Acknowledgements
This book was written and reviewed by:
Cindy Zadikoff, MD, MSc
Yasaman Kianirad, MD

Giselle Petzinger, MD, Beth Fisher, PT, PhD, Lauren Hawthorne,

and Michael Jakowec, PhD contributed information on exercise
and cognition.

This book has been made possible through the generous donations
of thousands of individuals affected by Parkinson’s and grants from:

Design: Ultravirgo
 5

CHAPTER ONE

About Parkinson’s
Disease
If you’re reading this book, you are probably already familiar
with Parkinson’s disease, but here are some basics: Parkinson’s
is a neurodegenerative disorder that affects about one million
people in the United States and 10 million people worldwide.
It is called a movement disorder because of the tremors,
slowing, and stiffening movements it can cause, but its
symptoms are diverse and usually develop slowly over time.
Parkinson’s disease is not diagnosed with a test or a scan; instead it is
diagnosed by your doctor, who asks you questions about your health and
medical history and observes your movement. Your doctor may want you
to have some tests, such as imaging, to rule out other possibilities. The
goal of treatment is to help you manage your symptoms. Good symptom
management can help you stay healthy, exercise, and keep yourself in tip-
top shape. Although there is no way now to correct the brain changes that
cause Parkinson’s, we know that exercise can help you fight the disease and
that staying healthy can prevent setbacks that make PD progress faster.
Great care is the key to living your best life with Parkinson’s.
6 MANAGING PARKINSON’S MID-STRIDE

Lack of dopamine — a neurotransmitter, one of several chemicals your brain

cells use to send signals to each other — in people with Parkinson’s was
first described in the 1960s. Soon after, dopamine-replacement therapy
using levodopa became — and remains — the gold standard treatment.
However, just as your doctor looks at tremors as a sign of changes in
your brain, neuroscientists know that the reduction in dopamine in the
brain is a sign of changes happening in brain cells. Neuroscientists think
of Parkinson’s as a disease linked to several things in brain cells, from
mitochondria, the power plants of the cell, to lysosomes and proteasomes,
the garbage disposals of the cell. You might also hear that Parkinson’s is
linked to a protein in the human brain called alpha-synuclein (α-synuclein).
The exact way that all these pieces fit together remains unknown, but
researchers continue to study how cells and brain networks are affected in
Parkinson’s to improve our understanding of the disease and potential for
treatments. We also know that dopamine is not the only neurotransmitter
to be affected by Parkinson’s. The disease process also disrupts other brain
chemicals like serotonin, norepinephrine, and acetylcholine, and this can
cause changes in mood, behavior, and thinking (cognition).
 7

CHAPTER TWO

PD Mid-Stride
You probably experienced a range of emotions upon hearing
the words, “You have Parkinson’s disease.” In addition to fear,
confusion, or anger, relief might have been one of them. For
months, if not years, you might have been nagged by the
question, “What’s going on with my body?” You or a loved one
probably noticed a tremor, slowness, or stiffness and spoke
to a doctor about it. The doctor – or maybe it took several
doctors – probably referred you to a neurologist. Now you have
treatment options to improve your symptoms. You and your
health care provider might have decided to start medication
right away, or you might have waited a bit, focusing on exercise
to manage your symptoms.
8 MANAGING PARKINSON’S MID-STRIDE

After beginning treatment, whatever symptoms and complaints that led

you to the doctor in the first place probably improved greatly. In these first
few years of treatment, usually with easy-to-take Sinemet (carbidopa-
levodopa pills) or other medications, people generally enjoy nearly
complete relief from symptoms with minimal side effects. During this time,
you have smooth transitions between doses. It is necessary to rely on a
clock to tell you when it is time to take the next dose of medication because
there is no return of symptoms between one dose of levodopa and the next.
Medications allow you to go about your life, participating in work, hobbies,
and social activities as you did before Parkinson’s.

After several years of being treated with levodopa, many people with PD
notice that controlling symptoms becomes more difficult and requires more
medication, but you can still live a good life.

What Are Motor Fluctuations and Dyskinesias?

Motor Fluctuations
Motor fluctuations are sudden, unpredictable changes in your ability to
move. They are also called “on-off” fluctuations. When levodopa begins to
take effect, you experience periods of good symptom control (“on” time),
when you can move and function well. As levodopa begins to lose its effect
(“wearing off”), you may have periods in which symptoms are suddenly
much more noticeable and movement becomes more difficult (“off” time).
You might even have periods in which peak medication levels produce
involuntary movements (dyskinesias). If you experience these various states
throughout the day, you are said to have motor fluctuations.

Usually, when you first develop wearing off, the switch from “on” to “off”
happens gradually. “Off” periods initially are predictable and occur near the
end of each medication dose. For example, when they first begin treatment,
many people are placed on a regimen of carbidopa-levodopa three times a
day. Early on, as we described above, the medication lasts dose to dose, but
over time the medication may begin to wear off 30 minutes to an hour before
the next dose. At this point, you notice a gradual return of symptoms. As
Parkinson’s progresses, levodopa stays effective for shorter periods of time.
This means you have to take more frequent doses, and “off” episodes may
become more sudden and/or unpredictable.
 PD MID-STRIDE 9

For some people the first sign of an “off” period is a return of motor
symptoms – tremor, stiffness, or slow movement. For others, non-motor
symptoms might creep in. This could include a range of complaints, such
as pain, anxiety, fatigue, mood changes, difficulty thinking, restlessness,
sweating, or drooling (from decreased swallowing). Since non-motor
symptoms can be subtle in the beginning, it may be difficult at first to link
them to a change in the effect of your PD medication.

Dyskinesia
Dyskinesias are involuntary movements: they are often fluid and dance-like,
but they may also cause rapid jerking or slow and extended muscle spasms.
Any part of the body may be involved, including the face, arms, legs, and
trunk. The most common kind of dyskinesias are “peak dose.” These occur
when the concentration of levodopa in the blood is at its highest – usually
one to two hours after you take it. This typically matches up with when the
medications are working best to control motor symptoms.

Sometimes, instead of at peak dose, dyskinesias can occur as you are just
beginning to turn “on” and again as you begin to turn “off.” This is known
as diphasic dyskinesia, or the dyskinesia-improvement-dyskinesia (D-I-D)
syndrome. Diphasic dyskinesias are associated with relatively low doses
of levodopa and, unlike peak-dose dyskinesias, tend to improve with higher
doses of levodopa.

Dyskinesias may be mild and non-bothersome, or they can be severe.

Most people with PD prefer to be “on” with some dyskinesias rather than
“off” and unable to move well. However, for some people dyskinesias can
be severe enough that they interfere with normal functioning.
John was diagnosed with Parkinson’s in 1997, and in early 2002 he had
his first episode of dyskinesia. I usually describe it to people as a rapid
misfiring of his nerves, and in John’s case, it caused very violent shaking
and misfiring. We could watch the clock and after exactly four hours,
it would subside. Initially, it only happened every couple of months.
Then it increased to once a week, then once a day, then sometimes a
couple of times a day. As his wife, it was alarming to watch.   — Donna
10 MANAGING PARKINSON’S MID-STRIDE

Other Common Issues

Dystonia
Dystonia is when your muscles continuously contract, causing parts of your
body to twist. This leads to repetitive movements or abnormal postures
and can cause great pain and discomfort. Many times it starts when you try
to perform an action with the involved body part. For example, if you have
dystonia of the foot, you may be fine when seated, but if you start to walk,
you may develop toe curling or foot inversion (turning in of the foot or ankle).
Dystonia can also be present when you are not using the involved body part;
in the example above, you could have toe curling even when sitting.

In Parkinson’s disease, dystonia can occur at different times. In young

people with PD, a common initial symptom is cramping or curling of the
toes and feet after activity. Like dyskinesia, dystonia may occur at peak
dose (when the medication is working at its best), and it is sometimes
the earliest sign of dyskinesia. More commonly, dystonia occurs when
dopamine levels are the lowest (“off” periods) or when the medications
are just starting to kick in. This means some people experience dystonia
first thing in the morning, as nighttime medications are wearing off and
before they take their first daytime dose. Sometimes dystonia can persist
intermittently throughout the day, and may not correlate with timing of
medications at all.

It is important to keep track of when dystonia occurs, to figure out if there

is a relationship between the onset of dystonia and the timing of your
medication. Talk to your doctor. If there is a pattern (keep track using
the Parkinson’s Symptoms Diary on pages 18–19), adjusting the dose or
frequency of medication may help.
 PD MID-STRIDE 11

Freezing
As Parkinson’s advances, it may bring with it a variety of symptoms that
are uncommon in early stages, such as problems with walking (gait
abnormalities) and poor balance (postural instability). Some people
experience “freezing,” the temporary, involuntary inability to move. This can
occur at any time – for example, you want to walk forward but your feet feel
stuck to the ground (called “freezing of gait”), or you may be unable to get
up from a chair.

Some freezing happens when you are due for the next dose of dopaminergic
medication. This is called “off” freezing. Usually, the freezing episodes
lessen after taking your medication.
The first time I froze, I fell. I couldn’t believe it. It was like I had cement
boots on and couldn’t raise my feet. I reported it to my doctor, and she
added a dopamine agonist to my regimen. I still have freezing episodes
from time to time, but not as much. When I have an episode, I try to shift
my weight from leg to leg. This helps. Also, I always turn in a square
instead of trying to do a pivot turn. I also notice that I’m more likely
to freeze at doorways when the floor surface changes, so I’m extra
careful then.   — Erika

TIPS FOR CAREGIVERS

Freezing (feet glued to floor) is a significant cause of falls. TIP SHEET

Freezing often happens while turning around in close quarters.

Try to avoid tight turns whenever possible. Instruct the person with
Parkinson’s to make wider turns.

If the person has a freezing episode while trying to walk, encourage him or
her to stop, straighten posture, and shift weight to one foot before beginning
to step with the other.

To help with freezing, count or clap a rhythmic beat.

Some people who experience freezing episodes do better with a visual cue,
such as “step over my foot.”
12

CHAPTER THREE

Treatment
Motor fluctuations and dyskinesias tend to develop at about
the same time in the disease course. Early in the disease, the
benefits of levodopa can last for several hours. The length of
effect depends on the half-life of the drug (the time it takes
for your body to process the drug in your blood) and other
individual factors like body composition and dietary intake.
For carbidopa-levodopa, the half-life is about 60–90 minutes,
but “on” time can last much longer. This is most likely because
some levodopa is still stored in the remaining dopamine-
producing brain cells. So, when you first start on levodopa
therapy, you take it only a few times a day and can smoothly
transition from one dose to the next without a return of
symptoms in between doses.
 13

As Parkinson’s progresses, more dopamine-producing brain cells die,

and the benefits from a dose of levodopa do not last as long. Your brain
eventually reaches a point where it stops producing dopamine in any
significant amount, so it must rely on medicine to replace dopamine, such
as levodopa and dopamine agonists. When this happens, scientists think
that two things are going on:
• First, the cells in your brain lose the ability to store some of the levodopa,
and you don’t get a benefit when it is not present in your blood (i.e., after
60-90 minutes); and
• Second, the cells in your brain become more and more sensitive to both
higher and lower concentrations of levodopa, making you more likely to
experience “off” time when your blood levels are low and to experience
dyskinesia when your blood levels are high.

So, as these changes happen in your brain, you will have to take more
doses throughout the day to avoid the return of symptoms, such as tremor,
slowness, and shuffling gait.
For a few years, my medication was working great! People didn’t
even know that I had Parkinson’s. Then gradually my symptoms
started to come back sooner than the time I was supposed to take
my next pill. I was really anxious at first, but with some medication
adjustments and increasing my dosages, my doctor was able to
put me back on track.   — Ken

How Will My Doctor Work with Me

to Manage These?
The “therapeutic window” describes the period of time when a medication
is effective. There is enough medication in your body to control your
symptoms, but not too much so that side effects occur. Good medication
response occurs within the window – outside the window, you might get
motor fluctuations (not enough medication) or dyskinesias (too much). “Off”
periods and dyskinesias tend to increase in frequency and severity as the
disease progresses. See figures on next page.
14 MANAGING PARKINSON’S MID-STRIDE

The figures here, based on insights from NPF’s Parkinson’s

Outcomes Project, the largest-ever clinical study of Parkinson’s,
illustrate how levels of dopamine in your brain change and how
your body reacts to those changes as Parkinson’s progresses.

THE BASIC MODEL

DOPAMINE LEVELS

TIME (hours) .5 1 1.5 2 2.5 3 3.5 4

Medication Effect Therapeutic Window Dyskinesia (dark blue area) “Off” Symptoms
(blue line) (white area) If you get too much dopamine, (light blue area)
The blue curve The goal is to get you may experience dyskinesia: After you take your
represents how we think dopamine levels into the writhing motions that are pill(s), as your body
the level of dopamine in “therapeutic window.” difficult or impossible to metabolizes the
the brain changes after When levels are here, you control. Usually we say that dopamine at the end
you take medication: don’t feel the absence these go away when you get of the dose, you may
levels rise, you of dopamine. However, back into the therapeutic experience “wearing off,”
metabolize the drug, you might still have window, but they might leading to “off” episodes.
then levels decline. symptoms, especially actually persist for a bit even This happens later in
later in the disease. after dopamine levels go down. the disease.

BEFORE PARKINSON’S Dopamine Levels (dark gray line)

Natural (or “endogenous”) dopamine
Wide Therapeutic Window levels stay within the therapeutic window.
DOPAMINE LEVELS

7am 9am 11am 1pm 3pm 5pm 7pm 9pm 11pm

 TREATMENT 15

EARLY PARKINSON’S
Some “off” before first dose, Second dose with lunch at noon, A late dinner results in some mild afternoon
with breakfast at 8 am. with no “off” experienced. “off” as the lunch dose is metabolized.
DOPAMINE LEVELS

7am 9am 11am 1pm 3pm 5pm 7pm 9pm 11pm

Natural dopamine levels (dark gray line) are below the therapeutic
window (white area), resulting in “off” (light blue) without medications.

MID-STAGE PARKINSON’S
Early morning “off” is bad before first dose at 8 am. Some people You might also use an alarm to keep on
set an early alarm to take pills before they get up for the day. schedule, which can work pretty well.

Mild dyskinesia
DOPAMINE LEVELS

7am 9am 11am 1pm 3pm 5pm 7pm 9pm 11pm

Natural dopamine levels (dark gray line) are well below the therapeutic window (white area),
resulting in pretty severe “off” state (light blue area) without medications.

ADVANCED PARKINSON’S
Some people need a fast-acting “rescue” Mid-day off Because the therapeutic window is so narrow,
medication to jumpstart their day. dosing intervals can be as short as 2 hours.

Mild dyskinesia
DOPAMINE LEVELS

7am 9am 11am 1pm 3pm 5pm 7pm 9pm 11pm

Natural dopamine (dark gray line) is low.
16 MANAGING PARKINSON’S MID-STRIDE

The goal of managing motor fluctuations and dyskinesias, like the goal for
treatment of any symptom, is to help you remain as active and independent
as possible. If your symptoms are mild and not bothersome, no changes
need to be made to the medication regimen. But if these symptoms start
to impact your daily functioning or quality of life, you can work with your
physician to adjust medications. When people first begin to experience
these complications, there is a relatively wide therapeutic window (see
“Early Parkinson’s” on the previous page). Motor fluctuations can often
be reversed by increasing the dose of levodopa or incorporating other
Parkinson’s medications without inducing troublesome dyskinesias.

Management of Motor Fluctuations

Depending on what medications you are already taking, there are several
approaches your doctor can take to help smooth out your response to
medications to avoid or minimize fluctuations.

Your doctor can adjust your dose of levodopa, either by giving you a higher
dose each time you take your medication, or by giving you the same dose or
a smaller dose more frequently. Your doctor may add different medications
to your current regimen. There are several medications that can be taken
along with carbidopa-levodopa. These help keep levels of dopamine more
consistent to avoid “off” time. All of these medications have the same end
goal – increasing dopamine in the brain – but they work differently on the
body and brain. For this reason, the options are not mutually exclusive and
often can be tried together.

Treatment options include the following (see Appendix on page 34 for a list
of typical Parkinson’s medications and a pronunciation guide):
• Increase the levodopa dose or frequency of administration
• Add a COMT inhibitor (i.e., entacapone or tolcapone)
• Add a dopamine agonist (i.e., ropinirole, pramipexole, rotigotine)
• Add an MAO-B inhibitor (i.e., selegiline, rasagiline)
• Switch from immediate-release (IR) carbidopa-levodopa to extended-
release (ER) carbidopa-levodopa or to a combined preparation

NOTE
For more information, order your free copy of the book Medications
from the National Parkinson Foundation by calling the NPF Helpline at
1-800-4PD-INFO (473-4636) or online at www.parkinson.org/books.
 TREATMENT 17

A controlled-release formulation of carbidopa-levodopa (Sinemet CR) is

available. It was designed to extend the benefits you get from the same
dose of carbidopa-levodopa and possibly decrease the number of pills
needed per day. However, studies have shown that people who take the
immediate-release version and those who take the controlled-release
form have about the same number and frequency of motor complications.
Furthermore, the CR version can take longer to take effect than regular
carbidopa-levodopa and it is not always well absorbed into the blood. For
these reasons, it is perhaps most valuable in treating wearing off effects
that occur overnight.

Extended-release carbidopa-levodopa capsules (Rytary) are a newer

attempt to deliver levodopa so that it lasts longer. These capsules contain
both immediate- and extended-release carbidopa-levodopa. This design
allows rapid absorption of part of the dose but slower absorption of the rest
and therefore maintains levodopa concentrations longer than immediate-
release levodopa alone. This form of levodopa may reduce “off” time while
requiring fewer medication administrations.

It is worth mentioning that carbidopa-levodopa can be obtained as an orally

disintegrating (melt in your mouth) form (Parcopa). This can be useful if
you struggle to swallow pills. As an alternative, Sinemet may be chewed
(immediate-release only; do NOT chew controlled-release).

Another option, rather than adding more medications or taking medications

more frequently, is to use an on-demand or as-needed approach. There are
several short-acting dopamine replacement medication options available or
in development that can be used as “rescue” therapy in people experiencing
“off” episodes. They are designed to take effect quickly: within 15 minutes
or less. Typically, the response is short, maybe an hour or two. It is called
“rescue” therapy because it bridges gaps in other medication effectiveness.
“Rescue” medications can be effective for people who struggle with
morning akinesia (inability to move or slowness of movement) or who
experience an unexpected or inconvenient “off” episode. At the time of this
writing, there is only one such medication approved in the U.S., but others
are on their way (see page 20).
18 MANAGING PARKINSON’S MID-STRIDE

WORKSHEET

Parkinson’s Symptoms Diary

Many symptoms of Parkinson’s can be bothersome and
interfere with day-to-day quality of life. Patient and family
observations can help the medical team make a care plan.
Fill out this worksheet and share it with providers to see if
there is a pattern to when Parkinson’s symptoms occur.

TIME MEDICATION MEAL SLEEP

 TREATMENT 19

List the symptoms you want to track - e.g., tremor, dyskinesia, anxiety - in the top row.
When those symptoms occur, fill in the number that corresponds to the severity at that time.
Write medication names and doses next to the times at which you take them.
Put an X (or list foods) in the “Meal” column at mealtimes.
Put an X in the “Sleep” column when you sleep.

0 = NONE
1 = SLIGHT OR MILD
2 = MODERATE, BOTHERSOME
3 = SEVERE, VERY BOTHERSOME

SYMPTOMS List 3

NOTES

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3

0 1 2 3 0 1 2 3 0 1 2 3
20 MANAGING PARKINSON’S MID-STRIDE

Current and potential “rescue” medications:

• Apomorphine (Apokyn) is an FDA-approved, short-acting dopamine
agonist that can be used as “rescue” therapy. It is delivered via a
subcutaneous injection, similar to an insulin shot or EpiPen, which
allows for it to take effect quickly: within 3.5 to 12.5 minutes.
•A
 sublingual (absorbed under the tongue) strip of apomorphine is
currently being studied.
 powder aerosol inhaled formulation of levodopa (similar to inhalers
•A
used to treat asthma) is also being studied.

Management of Peak-Dose Dyskinesia

Peak-dose dyskinesias occur at the time when levodopa is working best –
when levodopa is at its highest concentration in the blood. In the earliest
stages, they are usually not bothersome, and you may not even notice these
extra movements. Because they tend to occur at peak concentrations of
levodopa, one management strategy is to reduce dopamine levels. This
can be done with small decreases in levodopa dosage or by removing other
dopaminergic medications (e.g., dopamine agonists, COMT inhibitors, or
MAO-B inhibitors).

However, as Parkinson’s progresses, if you reduce the levodopa dose,

your Parkinson’s symptoms will not be well controlled. Amantadine is
a medication that may be added to your medication regimen to reduce
dyskinesias without worsening “off” periods. At the time of this writing,
there are several medications in development with the goal of improving
management of dyskinesia.

Management of Dystonia
Depending on when dystonia occurs, your doctor may try different
approaches to treatment. If you have morning dystonia, which occurs before
your first dose of levodopa kicks in, your physician may add a bedtime dose
of controlled-release carbidopa-levodopa or a long-acting dopamine agonist.

If dystonia is related to diphasic dyskinesia (i.e., as the medications are

wearing off or before they begin working), increased doses of levodopa
or smaller doses more frequently may be useful. On occasion, oral
medications to treat spasms, such as anticholinergic medications, can be
 TREATMENT 21

tried, but these can cause significant mental and physical side effects, so
their use should be carefully considered.

If other measures fail and your dystonia doesn’t correlate with levodopa
timing, you and your health care provider may consider botulinum toxin
injections. Botulinum toxin weakens muscles. By targeting the overactive
muscles, your physician can improve both the abnormal position and the pain
caused by dystonia. It can take several injections to optimize benefit and may
not always be effective, but when it works the benefit can last for several
months before it wears off and re-injection is necessary. Botulinum toxin A
(Botox) is sometimes used to decrease saliva production for people who have
issues with drooling; botulinum toxin B (Myobloc) is used to treat dystonia.

What Next?
With advancing disease, there is a further narrowing of the therapeutic
window. For some people, it can become increasingly difficult to find a dose
of levodopa that is both effective and does not cause dyskinesia. As we
learned above:
• If you increase medications in an attempt to improve “off” time, it may
lead to worsening dyskinesia.
• If you decrease medications in an attempt to improve dyskinesia, it
may result in worsening of parkinsonian symptoms or more frequent
“off” periods.

When faced with this paradox, your physician might suggest alternatives
to better manage your symptoms. Fortunately, more options are becoming
available for people who are significantly bothered by these fluctuations.

Deep Brain Stimulation (DBS)

There are several neurosurgeries that have been used to treat the
symptoms of Parkinson’s. Today, the most common is deep brain
stimulation. During DBS surgery, a special wire, called a lead (pronounced
“leed”), is inserted into a specific area of the brain responsible for
movement. The lead is connected to a pacemaker-like device that is
typically implanted in the chest region, below the collarbone. This device
(the neurostimulator, or pulse generator) creates electrical pulses that are
 22 MANAGING PARKINSON’S MID-STRIDE

sent through the lead, which “stimulates” the brain and regulates abnormal
brain cell activity. Stimulator settings can be adjusted periodically both by
the DBS programmer (a doctor, nurse, physician assistant, or other qualified
staff member) and by the person with Parkinson’s, within the parameters
that the programmer sets.

The best candidate for DBS is someone who has a good response to
levodopa, but experiences disability because of motor fluctuations and
dyskinesias that cannot be satisfactorily controlled by oral medications.

Carbidopa-Levodopa Intestinal Gel (Duopa)

If frequent administration of oral medications doesn’t smooth out blood levels
enough, your carbidopa-levodopa can be delivered in gel form, which is slowly
and continuously pumped through a tube inserted surgically through the
stomach into your intestine, similar to an insulin pump for diabetics. You wear
the pump, and it smoothly delivers medication for up to 16 hours at a time.
This may be an option for people who are not candidates for DBS because of
mild cognitive impairment or other issues. Lifestyle factors must be taken into
account when choosing this therapy, as you must consider carrying the pump,
potential for the tube to get dislodged, and other factors.

Advanced Parkinson’s with Continuous Dopaminergic Stimulation

This example shows using a fast-acting A steady supply of medication delivered via a
“rescue” medication in the morning to get started. pump helps target the right dopamine levels.
DOPAMINE LEVELS

7am 9am 11am 1pm 3pm 5pm 7pm 9pm 11pm

Natural dopamine (dark gray line) is low.
 TREATMENT 23

I was diagnosed with Parkinson’s in 2008 and underwent deep brain

stimulation surgery for disabling dystonia in 2013. After the DBS surgery,
I was able to walk without the need for a wheelchair or cane. In early
2015, with progression of the disease, my dystonia got worse and I
needed a higher dose of levodopa. My doctor suggested that I was ready
for the Duopa pump. Since levodopa is pumped directly into the small
intestine, bypassing the stomach, I’ve found that there is less interaction
with food, less wearing off, and less “off” time! I didn’t realize how much
of an adjustment it would be getting used to the tubing that carries the
levodopa from the pump to the small intestine, but after a couple months,
I got used to it. I feel a bit stronger than before, to the point that I actually
feel like exercising and getting together with others again. Do I still need
to budget my energy? Yes, I have Parkinson’s. But I can be less strict
about it. The pump and DBS have been a great blessing to me and my
husband, each in its own time and for its own reason, in this fight against
Parkinson’s disease.   — Pam

On the Horizon
As we think about what’s next, your doctor will be aware that dopamine is
not the only neurotransmitter to be affected by Parkinson’s. The disease
process also disrupts other brain chemicals like serotonin, norepinephrine,
and acetylcholine, and this can cause changes in mood, behavior, and
cognition. Researchers are studying the impact of PD on the cholinergic
system (the system of cells that use acetylcholine to send messages).
There is some evidence that gait impairment (problems with walking) and
falls in PD are related to dysfunction of the cholinergic system, and there
may soon be treatments to help with this. The cholinergic system is also
involved in controlling memory and sleep, and problems in these areas may
respond to the same treatments. The cholinergic system is affected after
the dopamine system, and ways to treat its dysfunction – from exercise to
medications to electrical stimulation – are still being researched.
24

CHAPTER FOUR

Non-Motor
Fluctuations
Parkinson’s is a progressive disorder – this means that
symptoms develop slowly over time – and the disease
progresses differently from person to person. There is a
saying, “If you’ve met one person with Parkinson’s, you’ve met
one person with Parkinson’s.” While there are many common
experiences, each individual’s symptoms, progression, and
overall journey with the disease will be unique.

Most people with Parkinson’s also have non-motor symptoms,

though each person experiences them a little differently. No one
has every symptom; you may experience them, or you may not.
Like motor fluctuations, you can eventually have fluctuations in
the frequency and severity of your non-motor symptoms.
 25

Your doctor and other members of your care team can help you manage
non-motor symptoms, which can include the following:
– Anxiety
– Apathy (lack of motivation or drive)
– Changes in speech and swallowing
– Cognition changes, such as slower thinking, difficulty keeping
track of time, or difficulty focusing
– Constipation and other problems with digestion
– Depression
– Dyspnea (shortness of breath)
– Excessive sweating
– Hallucinations or paranoia
– Impulse control problems, or compulsive behaviors, which can
appear as problems with shopping, gambling, or hypersexuality;
anger management issues can also be a problem of impulse control
– Orthostatic hypotension (lightheadedness upon standing)
– Pain
– Seborrheic dermatitis
– Sexual dysfunction
– Sleep problems
– Urinary incontinence: having to go more frequently, having little or
no warning before needing to urinate, or loss of control of urine
– Vision problems

In addition to non-motor symptoms of Parkinson’s disease itself, over time

you may become more susceptible to certain side effects of medication.
For instance, orthostatic hypotension may by worsened by certain
medications, and cognitive side effects or hallucinations can be aggravated
by medications that have been tolerated in the past. This change in
susceptibility can influence which medication combinations work best and
may drive the need to change medications, add medications (to combat
hypotension, for example), or simplify your regimen to just carbidopa-
levodopa in some cases.

These and other treatment and lifestyle adjustments can be made to

successfully manage your symptoms. Make sure to tell your doctor if you
are experiencing anything out of the ordinary, as early recognition and
treatment can help you minimize symptoms. (You can use the Parkinson’s
Symptoms Diary on pages 18–19 to track non-motor symptoms, too.)
26

CHAPTER FIVE

Exercise
Because of how Parkinson’s impacts movement, it is natural
to move less and do less as the disease progresses. However,
it’s a troubling cycle: PD itself causes symptoms like slowness
and stiffness that make it hard to move, and a decline in ability
to move may be due to reduced physical activity! For people
with Parkinson’s, exercise is medicine.
It is well-known that exercise is good for the body: it can prevent problems
due to inactivity and muscle weakening; help maintain joint flexibility, muscle
strength, and tone; reduce inflammation; and improve circulation to the heart
and lungs. In people with PD, there is clear evidence that exercise helps with
both the motor and non-motor symptoms. Studies have shown that people
with Parkinson’s who exercise fall less often and have fewer falls resulting in
injury, and exercise leads to improvement in flexibility, strength, and balance.

Findings from the National Parkinson Foundation’s Parkinson’s Outcomes

Project, the largest-ever clinical study of Parkinson’s, show that increasing
physical activity to at least 2.5 hours a week can achieve what we can’t yet
do with medicine: slow Parkinson’s progression. We don’t know for sure
what is happening in the brain, but people who exercise experience a milder
disease course and better quality of life, and people who start exercising
 27

find that their health improves. If you are not exercising at least 2.5 hours
a week, start now!
I’ve always been active, and two years prior to my diagnosis, I began
working out regularly, lifting weights and cardio training three to five
days a week. I felt good. Exercise gave me the strength and energy I
needed to keep up with my toddler. After I was diagnosed, I was put on
a trifecta of PD drugs. Then I read how exercise was THE ONLY THING
proven to slow the progression of PD. So, I began training much harder
than I ever had. I’ve experienced the benefits of exercise in my sleep.
My PD therapy is doing weights or running the track. I have more energy,
stamina, and strength than many men my age. — Alison

Exercise Effects on Cognition

There is also evidence that regular exercise is good for the mind: exercise
has a positive effect on mood and overall sense of wellbeing, reducing
stress and increasing a sense of control over your Parkinson’s symptoms.
Now, we understand that these benefits go even further: exercise can
increase brain adaptability. NPF-funded studies show that exercise
facilitates neuroplasticity (the adaptability of your brain to new challenges)
and might even be able to reverse executive function deficits (e.g., problems
with focused attention and planning) in people with PD. All exercise is good
for Parkinson’s, and researchers are studying if any one exercise approach
is better than another for improving cognitive function in people with PD.
Researchers are also studying the effects of novelty – trying new exercises –
as there is some evidence that learning new exercises can actually lead
to brain cell growth.

Types of Exercise
Research has shown that people with Parkinson’s often need to work on the
sequencing or timing of motions and on compensating for the effects of the
disease (and the effects of aging!) on the brain’s ability to accurately judge
distances. Doctors refer to this as improving temporal and spatial accuracy.

So, while all exercise programs should include aerobic, strengthening

(resistance), and stretching activities, you should talk to your neurologist
and work with a physical therapist to design an exercise program that
focuses on practicing skills linked to rehabilitation of or compensation for
common PD motor deficits. These skills might include walking, along with
28 MANAGING PARKINSON’S MID-STRIDE

maintaining good posture and balance. Your care team will help ensure that
the exercise program you design together includes the following elements:
Feedback: So that you will know if you are doing the motion correctly;
Correction: Adjustments of your motion to improve performance;
Problem-solving: Exercises and activities that challenge your limits
and require thought;
Intensity: You should challenge yourself with goals for improvement
and repetition.
You can get to the problem-solving element by mixing up the way you are
learning a motor skill and trying different exercise types. Such variability
helps push your brain as well as your muscles. Different types of exercise
that have been found to help people with PD include biking, running, tai chi,
yoga, weight training, non-contact boxing, dancing, and more.

The most important recommendation is this: Choose an exercise

program that you will actually do! Don’t design a great, Parkinson’s-
optimized exercise program and then skip it because it is too hard or not fun.

The second most important recommendation is that you should do

something new and different. Pushing yourself to improve is like doing
something new, so that is okay, but don’t stagnate. Don’t just do the same
exercise at the same intensity in the same way all the time.

It is always important to check with your health care team to make sure the
type of exercise you are considering is safe and appropriate for you.

Don’t forget the emotional aspects of exercise. You need to both find
fulfillment in it and believe you can do it! If you are struggling with motivation
or with believing in your own ability, ask your care team, friends, or family for
help. You will likely feel a great sense of accomplishment after each session.

NOTE
For more information on the benefits of exercise and guidance on
exercises you can do, visit www.parkinson.org/exercise and request
your free copy of the publication Parkinson’s Disease: Fitness Counts
by calling the NPF Helpline at 1-800-4PD-INFO (473-4636).
 29

CHAPTER SIX

Talking about PD
In the early days after your diagnosis, you likely were able
to continue with your activities – work, hobbies, errands,
travel – as you did before “Parkinson’s disease” entered your
vocabulary. But as time goes on and symptoms start to break
through, it is common for people with Parkinson’s to stop
socializing as much as they used to. Sometimes the person
with Parkinson’s and the primary caregiver isolate themselves,
withdrawing gradually from participation in the community
and prior social life. This can happen for a variety of reasons
including fear of stigma or a lack of confidence to interact
with others or perform in social situations. It can be hard to
get around, or you may feel uncomfortable about attracting
attention and having to explain your Parkinson’s. It is normal
to feel that way, but if you are open to talking about it, you’ll
find out you are not alone.
30 MANAGING PARKINSON’S MID-STRIDE

It’s sad to see people with Parkinson’s struggling to get the care
and understanding they need. It’s why I strive to be the best
caregiver possible. I saw firsthand how my mother hesitated
to go out in public because her tremors and dyskinesia caused
people to stare.   — Emilia

Sharing about Parkinson’s can make it easier to comfortably socialize.

Talking about it is easy for some people but can be difficult for others.
You do not have to tell everyone – start with a few trusted family members
and friends, and get ahead of the questions through education.

First, it is important to understand the disease yourself. The National

Parkinson Foundation offers several options to help you and your
family learn all about Parkinson’s disease, from warning signs and
diagnosis through symptoms, treatment, and living well. Explore
www.parkinson.org for information on any PD topic, and call the NPF
Helpline at 1-800-4PD-INFO (473-4636) with any questions. You may even
share this book to help people understand what you’re going through.
 31

CHAPTER SEVEN

Hope
You have many reasons to hope for a bright future
with Parkinson’s. You can find hope in at least three
important places:

RESEARCH Every day, scientists are discovering new things about

Parkinson’s and new therapies and strategies that we hope will make
a difference for everyone affected by PD. Research doesn’t just mean
developing new drugs: over the past decade, our understanding of the
importance of exercise has helped change lives. New developments in deep
brain stimulation and other approaches to quieting harmful signals in the
brain or enhancing helpful ones are being tested every day. Many new drugs
are on their way to becoming part of day-to-day treatment, and researchers
are studying the most effective way to organize a Parkinson’s clinic to
ensure you get today’s best care.
Launched in 2009, the National Parkinson Foundation’s Parkinson’s
Outcomes Project, the largest-even clinical study of Parkinson’s, is leading
the way in many of these and other research areas. With almost 10,000
patients and 6,000 caregivers enrolled from four countries, we are looking
at patterns in treatment and care to change the course of the disease.
32 MANAGING PARKINSON’S MID-STRIDE

YOUR PARKINSON’S CARE TEAM You are in charge of putting together

a care team that works for you! First of all, it is important to see a
neurologist: people with Parkinson’s who seek expert care have better
outcomes. Each year in the U.S. alone, neurologist care saves about
4,600 lives, and better access to care could prevent the deaths of
another 7,000 people with PD. Neurologists who have extra training
in Parkinson’s and similar conditions are called movement disorder
specialists. The best neurologist for you might be someone from your
community, or it could be a scientist who has a clinic at the university
hospital. Your neurologist will make sure that you are taking the right
medications and have access to physical, occupational, and speech
therapists who have experience treating people with PD.

While seeing a neurologist is important, it is likely your primary care

provider who will manage your overall health. Find the health care
professional who is the best fit for you – this might be a knowledgeable
gerontologist, internal medicine doctor, family physician, or nurse
practitioner – and work with that person to get the very best care. Your
primary care provider or neurologist should be able to help you find a social
worker, counselor, or other mental health professional who can help you
with problems often associated with having a chronic illness. All these
members of your care team can help you develop strategies for what to do
if you have an urgent problem or an emergency: who to call, who to notify,
and what to tell any doctor who helps you. Don’t forget that you and your
care partner, if you have one, are also integral members of the care team!

YOUR OWN SELF-CARE Most important of all, and likely your greatest
source of hope, is what you and your family can do. You take your
medications, you exercise, you challenge yourself, and you achieve your
own victories. Get engaged in the fight against Parkinson’s! Look to other
people living well with Parkinson’s for inspiration. Set goals that you can
achieve, and then achieve them! Many people with PD recognize that a
Parkinson’s diagnosis is not the end of their life, but a turning point. Work
with your loved ones to figure out what this change means for you. Many
people find that the hope they gain from taking charge of their own life with
Parkinson’s is more visceral and tangible than the hope that a researcher
somewhere will achieve a breakthrough. There are things you can do today
to give yourself a better life with PD. Empower yourself to take charge!
 HOPE 33

Your Partner in Care

Over its history, the National Parkinson Foundation, a division of the
Parkinson’s Foundation, has invested millions of dollars in research,
education, and services, with a central focus on improving the lives of
people with Parkinson’s today. The foundation never focused on the distant
future, but instead ushered in revolutions in therapy, social work, and team
care. NPF was there for the launch of levodopa in the 1960s, and NPF was
supporting the care teams who said, days after the breathtaking power of
levodopa had sunk in, “Let’s get moving on the next breakthrough!”
Today’s best care is far superior to today’s average care, and NPF believes
that every person with Parkinson’s deserves the best. You deserve the
best. Through efforts such as the Parkinson’s Outcomes Project, NPF is
investing in pushing the limits of what we can do to help everyone affected
by Parkinson’s.

By reading this book, you are taking a step towards achieving your best life
with Parkinson’s.

The NPF Aware in Care kit contains information to

give to hospital providers about Parkinson’s and
what medications are safe for people with PD.
Call the NPF Helpline at 1-800-4PD-INFO (473-4636) to
request your free Aware in Care kit, or order one online at
www.parkinson.org/store. Review the materials when you receive the kit, so you
will be ready to advocate for yourself or your loved one if he or she is hospitalized,
whether it’s a planned visit or an emergency.
34

Appendix
TYPICAL PARKINSON’S MEDICATIONS

L-DOPA carbidopa-levodopa (Sinemet® or Sinemet CR®)

carbidopa-levodopa orally disintegrating (Parcopa®)
carbidopa-levodopa entacapone (Stalevo®)
carbidopa-levodopa extended-release capsules
(Rytary™)
carbidopa-levodopa enteral solution (Duopa™)

Dopamine ropinirole (Requip®)

Agonist pramipexole (Mirapex®)
rotigotine (Neupro®)
apomorphine (Apokyn®)

MAO-B Inhibitors rasagiline (Azilect®)

selegiline (l-deprenyl, Eldepryl®)
selegiline HCL orally disintegrating (Zelapar®)

Anticholinergics trihexyphenidyl (formerly Artane®)

benztropine (Cogentin®)
ethopropazine (Parsitan®)

COM-T Inhibitors entacapone (Comtan®)

tolcapone (Tasmar®)
carbidopa-levodopa-entacapone (Stalevo®)
has L-DOPA in formulation

Other amantadine (Symadine®, Symmetrel®)

 35

PRONUNCIATION KEY

Levodopa lee-voe-doe-pa
Carbidopa Car-bee-doe-pa
Sinemet Sin-uh-met
Rytary Rih-tar-ee
Duopa Due-oh-pa
Ropinirole Row-pin-er-ole
Pramipexole Pram-ih-pex-ole
Rotigotine Row-tig-oh-teen
Apomorphine Ae-poe-more-feen
Rasagiline Rah-saj-ah-leen
Selegiline Sell-edge-ah-leen
Entacapone En-tah-cuh-pone
Tolcapone Toll-cuh-pone
Amantadine Uh-man-ta-deen
36

Glossary
Glossary terms are identified with a blue underline the first time
they appear in this book.

A Acetylcholine A chemical messenger (see neurotransmitter) released by

cholinergic nerves; involved in many brain functions, such as memory and
control of motor activity

Akinesia Inability to move or slowness of movement



Alpha-synuclein A protein in the human brain that is associated with the


development of Parkinson’s; it is the main component of Lewy bodies

Anticholinergic The earliest medications used in Parkinson’s, these


medications block brain receptors for acetylcholine; they can cause
significant mental and physical side effects, so they are most useful in
young people with tremor-predominant PD; some antihistamines and
sleeping agents (e.g., Benadryl) are anticholinergics

C Cholinergic system The system of cells that use acetylcholine to

send messages

D Deep brain stimulation (DBS) A surgical option for treatment of

some Parkinson’s symptoms

D
 iphasic dyskinesia Dyskinesia that occurs as you are beginning to turn
“on” and again as you begin to turn “off”; associated with relatively low
doses of levodopa and tend to improve with higher doses of levodopa

D
 opamine A chemical messenger (see neurotransmitter) that is primarily
responsible for controlling movement, emotional responses, and the ability
to feel pleasure and pain; in people with Parkinson’s, the cells that make
dopamine are impaired or die
 37

Dopamine agonist (DA) A class of drug used to treat motor symptoms

of Parkinson’s; DAs are chemicals that have been manufactured to act
similarly to dopamine – that is, attach to the same cells in the brain
(receptors) that dopamine activates to produce its effect

Dyskinesia Abnormal, involuntary movement of muscles



Dyskinesia-improvement-dyskinesia (D-I-D) syndrome


See diphasic dyskinesia

D
 ystonia A disorder in which your muscles contract uncontrollably,
causing parts of your body to twist, resulting in repetitive movements or
abnormal posture; can be very painful

F Freezing Temporary, involuntary inability to move; frequently “freezing

of gait,” where the person with Parkinson’s wants to walk forward but their
feet feel stuck to the ground

H Half-life The time taken for the concentration of a drug in the

bloodstream to decrease by one half; drugs with a shorter half-life must
be taken more frequently

L 
Levodopa The medication most commonly given to control the motor
symptoms of Parkinson’s; it is converted in the brain into dopamine

M Motor fluctuations Sudden, unpredictable changes in the ability to move;

also called “on-off” fluctuations

M
 otor symptom A symptom of Parkinson’s that affects movement,
including tremor, rigidity, bradykinesia (slow movement), and postural
instability

Movement disorder specialist A neurologist with extra training (usually


a one- or two-year fellowship) in Parkinson’s and other movement disorders
38

N Neurodegenerative disorder A disease characterized by the loss of

cells of the brain or spinal cord, which over time leads to dysfunction
and disability; Parkinson’s disease, Alzheimer’s disease, and Lou Gehrig’s
disease are all examples

N
 europlasticity The brain’s ability to reorganize itself by forming new
connections; this allows the brain to compensate for injury and disease
and to respond to new situations and changes in the environment

Neurotransmitter A chemical messenger, such as dopamine or


acetylcholine, that transmits nerve impulses from one nerve cell to another,
allowing them to communicate with each other

 on-motor symptom A symptom of Parkinson’s that affects

N
something other than movement, such as sleep, mood, behavior, sensory
function (sense of smell, vision, pain), or autonomic function (urinary,
gastrointestinal, and sexual function); typically does not respond to
dopamine-replacement therapy

Norepinephrine A chemical messenger (see neurotransmitter) that is


released in response to stress; known as the “stress hormone,” it raises
blood pressure; it is also involved in regulation of mood

O “Off” time When medication is not working as well; symptoms become

more noticeable and movement becomes more difficult

“On-off” fluctuations
 See motor fluctuations

“On” time When medications are working and you experience good

symptom control
 39

Orthostatic hypotension The tendency for blood pressure to decrease


significantly when you rise from seated or lying to standing, causing
dizziness, lightheadedness, headache, blurred or dimmed vision, or fainting;
called neurogenic orthostatic hypotension when it is the result of a
neurologic disorder such as Parkinson’s

P Peak-dose dyskinesia The most common kind of dyskinesia in

Parkinson’s; happens when the concentration of levodopa in the blood is at
its highest, usually one to two hours after you take it

R “Rescue” therapy Fast-acting (<15 minutes) but short-lasting

(1–2 hours) dopamine replacement medication used by people experiencing
“off” episodes to bridge the gap in other medication effectiveness; may be
delivered as an injection, orally, using an inhaler, or other techniques

S Serotonin A chemical messenger (see neurotransmitter) that is involved

in regulation of mood, pain perception, gastrointestinal (digestive) function,
sleep, and other physical functions

T Therapeutic window The period of time when a medication is effective,

when there is enough medication in your body to control symptoms, but
not too much so that side effects occur

W Wearing off The time period when levodopa begins to lose its effect and
symptoms start to become more noticeable
40

Index
Acetylcholine 6, 23, 36, 38 Myobloc 21
Amantadine 20, 34, 35 Neupro 34
Apokyn 20, 34 Non-motor symptoms 9, 24–26, 38
Apomorphine 20, 34, 35 NPF Aware in Care kit 33
Artane 34 “Off” time 8–11, 13–17, 20–21, 23, 38
Azilect 34 “On-off” fluctuations 1, 8–9, 37–38
Botox 21 “On” time 8–9, 12, 38
Botulinum toxin 21 Parcopa 17, 34
Cogentin 34 Parkinson’s Outcomes Project 14, 26,
31, 33
Cognition 6, 22–23, 25, 27
Parsitan 34
Comtan 34
Peak-dose dyskinesia 9, 20, 39
COMT inhibitor 16, 20, 34
Pramipexole 16, 34–35
Deep brain stimulation (DBS)
21–23, 31, 36 Rasagiline 16, 34–35
Diphasic dyskinesia 9, 20, 36–37 Requip 34
Dopamine agonist 11, 13, 16, 20, 34, 37 “Rescue” therapy 15, 17, 20, 22, 39
Duopa 22–23, 34, 35 Ropinirole 16, 34–35
Dystonia 10, 20–21, 23, 37 Rotigotine 16, 34–35
Eldepryl 34 Rytary 17, 34–35
Entacapone 16, 34, 35 Selegiline 16, 34–35
Exercise 5, 7, 23, 26–28, 31–32 Sinemet 8, 17, 34–35
Extended-release carbidopa-levodopa Sinemet CR 17, 34
16–17, 34
Stalevo 34
Freezing 11, 37
Symadine 34
Immediate-release carbidopa-levodopa
Symmetrel 34
16–17
Tasmar 34
l-deprenyl 34
Therapeutic window 13–16, 21, 39
MAO-B inhibitor 16, 20, 34
Tolcapone 16, 34–35
Mirapex 34
Zelapar 34
Motor fluctuations 1, 8, 12–16, 21–22,
24, 37–38
About the National Parkinson Foundation, a division of the
Parkinson’s Foundation
At the National Parkinson Foundation (NPF) we make life better for people
with Parkinson’s through expert care and research. Everything we do helps
people with Parkinson’s actively enjoy life. We continue to bring help and
hope to the estimated one million individuals in the United States, and
10 million worldwide, who are living with Parkinson’s disease. A wealth
of information about Parkinson’s and about NPF’s activities and resources
is available on our website, www.parkinson.org.

Your feedback matters!

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Please take a few moments to fill out our online feedback form.
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Thank you for your support.
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The information contained in this publication is provided for informational and educational purposes
only and should not be construed to be a diagnosis, treatment, regimen, or any other health care
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. NPF disclaims any responsibility and
liability of any kind in connection with the reader,s use of the information contained herein. ©2017
200 SE 1st Street, Suite 800
Miami, FL 33131
1-800-4PD-INFO (473-4636)
[email protected]
www.parkinson.org