HELPLINE:

1.800.4PD.INFO (473.4636)
[email protected]

A Treatment Guide to Parkinson’s Disease

SE 1st Street, Suite 800 200 parkinson. org

Miami, Florida 33131
Broadway, Suite 1509 1359
New York, New York 10018
 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
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
About this book this book helpful, please consider a gift so that we may continue to fight
Parkinson’s on all fronts: funding innovative research, providing support
Glossary services and offering educational materials such as this publication.
Definitions for all words underlined in blue can Thank you for your support.
be found in the glossary starting on page 36. Donate online: Parkinson.org/donate
A comprehensive Parkinson’s disease glossary
Donate by mail: Parkinson’s Foundation
can be found at Parkinson.org/glossary.
200 SE 1st St, Suite 800
Miami, FL 33131
Index
An index of key words and topics can be Donate by phone: 1-800-4PD-INFO (473-4636)
found on page 40. Tax ID: 13-1866796

parkinson’s foundation resources

The Parkinson’s Foundation offers a variety of
resources to help you manage daily changes in
symptoms and other issues related to Parkinson’s.
The information contained in this publication is provided for informational and educational
In particular, check out the “Managing Parkinson’s purposes only and should not be construed to be a diagnosis, treatment, regimen or any
Mid-Stride” playlist at Parkinson.org/videos and 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.
the “How to Manage Parkinson’s ‘Off’ Time” The Parkinson’s Foundation disclaims any responsibility and liability of any kind in
podcast episode at Parkinson.org/podcast. connection with the reader,s use of the information contained herein. ©2022
 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 pointt, 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
Northwestern University
Feinberg School of Medicine
Yasaman Kianirad, MD
University of Illinois at Chicago

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

Lauren Hawthorne and Michael Jakowec, PhD
at Keck School of Medicine of the University of
Southern California, contributed information
on exercise and cognition.

This book has been made possible through

generous Parkinson’s Foundation donors and
a grant from Sunovion.

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 progressive
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, slow movements, stiffness
and muscle cramping 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 a neurologist, who asks you questions about your health
and medical history and observes your movement. Your doctor may
want you to have some tests or imaging; some, like an MRI, can help
rule out other conditions, while others, like DaTScan, may help confirm a
Parkinson’s diagnosis if there is uncertainty. The goal of treatment is to
help you manage your symptoms. Good symptom management can help
you to stay healthy, exercise, and keep yourself in the best possible shape.
Although at this time there is no way to correct the brain changes that
cause Parkinson’s, we know that exercise can help you maintain your ability
6 Managing Parkinson’s Mid-Stride

to fight the disease and that staying healthy can reduce setbacks that make
PD progress faster. Great care is an important part of living your best life
with Parkinson’s.

Lack of dopamine in people with Parkinson’s was first described in the 1960s.
Dopamine is a type of neurotransmitter
neurotransmitter, or chemical messenger, one of
several chemicals your brain cells use to send signals to one another. Soon
after, dopamine-replacement therapy using levodopa became – and remains
– the gold standard treatment. However, we know that the dopamine system
is not the only one affected by Parkinson’s. The disease process also disrupts
other brain networks, including those linked to mood, behavior and thinking
(cognition). You might also hear that Parkinson’s is linked to a protein in the
human brain called alpha-synuclein
alpha-synuclein. 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.

You and your family may have questions or fears about Parkinson’s and
genetics. While there are several genetic mutations that can increase your
risk, for the vast majority of people, Parkinson’s is not inherited. There is no
test that can accurately predict who will develop Parkinson’s. Extensive gene
and biomarker research is underway to uncover the possible factors involved
in – not necessarily causes of – disease development.
 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
healthcare 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 changes in your ability to move. They are also called
“on-off” fluctuations
fluctuations. When levodopa begins to take effect, you experience
periods of good symptom control (“on”“on” time),
time when you can move and function
well. As levodopa begins to lose its effect (“wearing
wearing off
off”), you may have
periods in which symptoms are suddenly much more noticeable and movement
becomes more difficult (“off”
“off” time).
time You might even have periods in which
peak medication levels produce involuntary movements (dyskinesias
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 dyskinesia is “peak
peak dose.”
dose This occurs 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,
dyskinesia or the dyskinesia-improvement-dyskinesia (D-I-D)
syndrome. Diphasic dyskinesias are associated with relatively low doses of
syndrome
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.

In some people, dyskinesias can have a big impact on activities of daily living,
making it more difficult to get dressed, eat, perform hygiene tasks, exercise
and participate in your favorite hobbies. Dyskinesias can also have a social
and emotional impact. However, most people with PD prefer to be “on” with
some dyskinesias rather than “off” and unable to move well.
10 Managing Parkinson’s Mid-Stride

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

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
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

Tip Sheet
Freezing (feet glued to floor) is a significant cause of falls.

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

BEFORE PARKINSON’S Dopamine Levels (black 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 A late dinner results in some mild

Some “off” before first dose, Second dose with lunch at afternoon “off” as the lunch dose
with breakfast at 8 am. noon, with no “off” experienced. is metabolized.
DOPAMINE LEVELS

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

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

MID-STAGE PARKINSON’S You might also use an alarm

Early morning “off” is bad before first dose at 8 am. Some people to keep on schedule, which
set an early alarm to take pills before they get up for the day. can work pretty well.

Mild dyskinesia
DOPAMINE LEVELS

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

Natural dopamine levels (black 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 (black 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
 treatment 17

Controlled-release carbidopa-levodopa (Sinemet CR) is designed to release

over a period of four to six hours. The CR formulation 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 often used to treat wearing-off symptoms
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 beads. 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 formulation of levodopa may reduce “off” time
while requiring fewer doses.
There are several short-acting medication options available that can be used
as “rescue” therapy for 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. They do not replace your other Parkinson’s medications.
Instead, they can be used to treat unexpected, intermittent (sporadic) “off”
symptoms in between your regular Parkinson’s medication doses. “Rescue”
medications can be particularly effective for people who struggle with morning
akinesia (inability to move or slowness of movement).

Medications for the Treatment of Intermittent “Off” Episodes

Product Type of Medication Delivery Method
Apomorphine HCl Dopamine agonist Subcutaneous injection (needle under
injection (Apokyn) the skin)
Similar to an insulin shot or EpiPen
Apomorphine HCl Dopamine agonist Sublingual (under the tongue)
sublingual film Similar to breath freshening strips
(Kynmobi)
Levodopa inhalation Levodopa Inhaler (breathed through the mouth
powder (Inbrija) Similar to inhalers used to treat
asthma

NOTE
For additional information about dosing and side effects, read or download
our book Medications at Parkinson.org/Store.
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

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. The U.S. Food and Drug Administration has approved
an extended-release formulation of amantadine (brand name Gocovri)
specifically for the treatment of levodopa-induced dyskinesia in people with PD.
Other amantadine formulations are sometimes used off-label for 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 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 healthcare 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. Xeomin and Dysport are
two other brand name forms of botulinum toxin that can be safely used in the
treatment of dystonia.
 treatment 21

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.
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 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.
22 Managing Parkinson’s Mid-Stride

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 “rescue” A steady supply of medication delivered via a
medication in the morning to get started. pump helps target the right dopamine levels.

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

Natural dopamine (black 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
serotonin, norepinephrine and
acetylcholine, and this can cause changes in mood, behavior and cognition.
acetylcholine
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
O
 rthostatic 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 Parkinson’s 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 the experience of Parkinson’s progression. We don’t know for sure what
 27

is happening in the brain, but people who exercise experience a milder disease
course and better quality of life, and people who start exercising 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. Studies funded by the Parkinson’s Foundation 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
28 Managing Parkinson’s Mid-Stride

PD motor deficits. These skills might include walking, along with 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 healthcare 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 Parkinson.org/exercise and request your free copy of the
publication Parkinson’s Disease: Fitness Counts by calling our 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 Parkinson’s

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 Parkinson.org for information
on any PD topic, and call the Parkinson’s Foundation 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 Parkinson’s 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 more than 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.
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 healthcare 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 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. The Parkinson’s Foundation was there for the launch of levodopa
in the 1960s, and 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 the Parkinson’s Foundation believes that every person with Parkinson’s
deserves the best. You deserve the best. Through efforts such as the
Parkinson’s Outcomes Project, the Foundation 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 Parkinson’s Foundation Aware in Care kit

contains information to give to hospital
providers about Parkinson’s and what medications
are safe for people with PD. Call our Helpline at
1-800-4PD-INFO (473-4636) to request your free
Aware in Care kit, or order one online at Parkinson.org/store
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 or in another in-patient setting, 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)

Agonists 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)

COMT Inhibitors entacapone (Comtan)

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

Other amantadine (Symadine, Symmetrel),

extended-release amantadine (Gocovri, Osmolex ER)
 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

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
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

 iphasic dyskinesia Dyskinesia that occurs as you are beginning to turn

D
“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

 opamine A chemical messenger (see neurotransmitter

D 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

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

D
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

 ystonia A disorder in which your muscles contract uncontrollably,

D
causing parts of your body to twist, resulting in repetitive movements
or abnormal posture; can be very painful

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

F
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 Changes in the ability to move;

also called “on-off” fluctuations

 otor symptom A symptom of Parkinson’s that affects

M
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  eurodegenerative disorder A disease characterized by the loss of

N
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

 europlasticity The brain’s ability to reorganize itself by forming new

N
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
acetylcholine
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

 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

Orthostatic hypotension The tendency for blood pressure to decrease


significantly when you rise from seated or lying to standing, causing
dizziness, lightheadedness, blurred or dimmed vision, headache or fainting;
called neurogenic orthostatic hypotension when it is the result of
a neurologic disorder such as Parkinson’s
 39

P  eak-dose dyskinesia The most common kind of dyskinesia in Parkinson’s;

P
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

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

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

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

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

Index
Acetylcholine 6, 23 Motor fluctuations 1, 8, 12–16, 22, 24, 37
Amantadine 20, 34, 35 Myobloc 21
Apokyn 20, 34 Neupro 34
Apomorphine 20, 34, 35 Non-motor symptoms 9, 24–25, 26, 38
Artane 34 “Off” time 8–10, 13, 16–17, 20–21, 23, 38
Aware in Care kit 33 “On-off” fluctuations 8–9, 38
Azilect 34 “On” time 8–9, 12, 38
Botox 21 Osmolex ER 20
Botulinum toxin 21 Parcopa 17, 34
Cogentin 34 Parkinson’s Outcomes Project
Cognition 6, 23, 25, 27 14, 26, 31, 33

Comtan 34 Parsitan 34

COMT inhibitor 16, 20 Peak-dose dyskinesia 9, 20, 39

Deep brain stimulation (DBS) Pramipexole 16, 34, 35

21–23, 31, 36 Rasagiline 16, 34, 35
Diphasic dyskinesia 9, 20, 36 Requip 34
Dopamine agonist 11, 13, 16, 20, 34, 37 Rescue therapy 39
Duopa 22–23, 34, 35 Ropinirole 16, 34, 35
Dysport 21 Rotigotine 16, 34, 35
Dystonia 10, 20–21, 23, 37 Rytary 17, 34, 35
Eldepryl 34 Selegiline 16, 34, 35
Entacapone 16, 34, 35 Sinemet 8, 17, 34, 35
Exercise 5, 7, 23, 26–28, 31 Sinemet CR 17, 34
Extended release carbidopa-levodopa Stalevo 34
16, 34 Symadine 34
Freezing 11, 37 Symmetrel 34
Gocovri 20 Tasmar 34
Immediate release carbidopa-levodopa Therapeutic window 13, 14–16, 21, 39
16
Tolcapone 16, 34, 35
l-deprenyl 34
Xeomin 21
MAO-B inhibitor 16, 20, 34
Zelapar 34
Mirapex 34
 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
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
About this book this book helpful, please consider a gift so that we may continue to fight
Parkinson’s on all fronts: funding innovative research, providing support
Glossary services and offering educational materials such as this publication.
Definitions for all words underlined in blue can Thank you for your support.
be found in the glossary starting on page 36. Donate online: Parkinson.org/donate
A comprehensive Parkinson’s disease glossary
Donate by mail: Parkinson’s Foundation
can be found at Parkinson.org/glossary.
200 SE 1st St, Suite 800
Miami, FL 33131
Index
An index of key words and topics can be Donate by phone: 1-800-4PD-INFO (473-4636)
found on page 40. Tax ID: 13-1866796

parkinson’s foundation resources

The Parkinson’s Foundation offers a variety of
resources to help you manage daily changes in
symptoms and other issues related to Parkinson’s.
The information contained in this publication is provided for informational and educational
In particular, check out the “Managing Parkinson’s purposes only and should not be construed to be a diagnosis, treatment, regimen or any
Mid-Stride” playlist at Parkinson.org/videos and 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.
the “How to Manage Parkinson’s ‘Off’ Time” The Parkinson’s Foundation disclaims any responsibility and liability of any kind in
podcast episode at Parkinson.org/podcast. connection with the reader,s use of the information contained herein. ©2022
HELPLINE:
1.800.4PD.INFO (473.4636)
[email protected]

A Treatment Guide to Parkinson’s Disease

SE 1st Street, Suite 800 200 parkinson. org

Miami, Florida 33131
Broadway, Suite 1509 1359
New York, New York 10018