Parkinsons Disease Frequently Asked Questions
Parkinsons Disease Frequently Asked Questions
Parkinsons Disease Frequently Asked Questions
The information contained in this publication is provided for informational and educational
parkinson’s foundation resources purposes only and should not be construed to be a diagnosis, treatment, regimen or any
You can find more helpful tips for managing other healthcare advice or instruction. The reader should seek his or her own medical or
other professional advice, which this publication is not intended to replace or supplement.
Parkinson’s in the books, fact sheets, videos and The Parkinson’s Foundation disclaims any responsibility and liability of any kind in
newsletters in our PD library at Parkinson.org/Library. connection with the reader,s use of the information contained herein. ©2018
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If you have additional questions that you would like to discuss, please call
our Helpline at 800-4PD-INFO or email us at [email protected].
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Contents
Understanding
Parkinson’s 5
Overview 5
What Happens in Parkinson’s? 8
Motor Symptoms & Complications 11
Non-motor Symptoms 18 PD Mid-Stride
7
Living with
Parkinson’s 39
Finding Support 39
Staying Independent 40
The Family & Parkinson’s 42
3
Treating
Parkinson’s 27
Finding a Doctor 27
Medications & Surgical Treatments 28
Complementary & Alternative Therapies 35
Exercise & Nutrition 37
Parkinson’s Research:
The Future 44
Drug Discovery & Development 44
Playing a Part in Research 46
Finding the Cure 48
4
Design: Ultravirgo
5
chapter one
Understanding
Parkinson’s
Overview
What is Parkinson’s Disease?
Parkinson’s disease (PD) is a chronic and progressive movement disorder
that involves the malfunction and death of vital nerve cells in the brain,
called neurons. Some of these dying neurons produce dopamine, a chemical
that sends messages to the part of the brain that controls movement and
coordination. As PD progresses, the amount of dopamine produced in the brain
decreases, leaving a person unable to control movement normally.
With mild Parkinson’s, movement symptoms, often tremor, occur on one side
and may be inconvenient, but do not affect daily activities. Friends may notice
changes in a person’s posture, walking ability or facial expression. Regular
exercise improves and maintains mobility, flexibility, range of motion and
balance, and also reduces depression and constipation.
With advanced Parkinson’s, a person may have great difficulty walking; may
be in a wheelchair or bed most of the day. The person is not able to live alone
and will need assistance with all daily activities. Cognitive problems may be
prominent, including hallucinations and delusions. Balancing the benefits of
medications with their side effects becomes more challenging.
Scientists are also exploring the idea that loss of cells in other areas of the
brain and body contribute to Parkinson’s. For example, researchers have
discovered that the hallmark sign of Parkinson’s disease — clumps of a protein
alpha-synuclein, which are also called Lewy bodies — are found not only in the
mid-brain but also in the brain stem and the olfactory bulb. These areas of
understanding parkinson’s 9
the brain correlate to non-motor functions such as sense of smell and sleep
regulation. The presence of Lewy bodies in these areas could explain the
non-motor symptoms experienced by some people with PD before any motor
sign of the disease appears. The intestines also have dopamine cells that
degenerate in Parkinson’s, and this may be important in the gastrointestinal
symptoms that are part of the disease.
Genetic Factors
The vast majority of Parkinson’s cases are not directly inherited. About 15 to 25
percent of people with Parkinson’s report having a relative with the disease. In
large population studies, researchers have found that people with an affected
parent or sibling have about twice the risk of developing PD compared to
someone without an affected relative. However, even with a positive family
history, the risk of developing PD is less than 10 percent.
Researchers have discovered several gene mutations that can cause the
disease directly, but these affect only a small number of families. Some of
these mutations involve genes that play a role in dopamine cell functions.
Parkinson’s has developed at an early age in individuals with mutations
in genes for parkin, PINK1, LRRK2, DJ-1, and glucocerebrosidase, among
others. However, genetic testing is not currently recommended as part of the
evaluation of a person with PD.
Environmental Factors
Some scientists have suggested that Parkinson’s disease may result from
exposure to an environmental toxin or injury. Epidemiological research has
identified several factors that may be linked to Parkinson’s, including rural
living, well water, manganese and pesticides.
For a person who associates the onset of Parkinson’s with a fall, head injury or
an extreme stressor, the likely explanation is that this individual already had mild,
unrecognized Parkinson’s that became more evident in response to the stressor.
understanding parkinson’s 11
When these drugs are stopped, the dopamine system returns to normal and
usually all of the features of parkinsonism reverse. If a person who already
has Parkinson’s disease takes one of the drugs mentioned above, the PD
symptoms may worsen.
Resting Tremor
In the early stages of the disease, about 70 percent of people experience a
slight tremor in the hand or foot on one side of the body, or less commonly
in the jaw or face. A typical onset is tremor in one finger. The tremor consists
of a shaking or oscillating movement, and usually appears when a person’s
muscles are relaxed, or at rest, hence the term “resting tremor.” The affected
12 frequently asked questions
body part trembles when it is not performing an action. Typically, the fingers
or hand will tremble when folded in the lap, or when the arm is held loosely at
the side, i.e., when the limb is at rest. The tremor usually ceases when a person
begins an action. Some people with PD have noticed that they can stop a hand
tremor by keeping the hand in motion or in a flexed grip. The tremor of PD
can be exacerbated by stress or excitement, sometimes attracting unwanted
notice. The tremor often spreads to the other side of the body as the disease
progresses, but usually remains most apparent on the initially affected side.
Although tremor is the most noticeable outward sign of the disease, not all
people with PD will develop tremor.
Bradykinesia
Bradykinesia means “slow movement.” A defining feature of Parkinson’s, brady-
kinesia also describes a general reduction of spontaneous movement, which can
give the appearance of abnormal stillness and a decrease in facial expressivity.
Rigidity
Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles
normally stretch when they move, and then relax when they are at rest. In
Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and
does not relax, sometimes contributing to a decreased range of motion.
People with PD most commonly experience tightness of the neck, shoulder and
leg. A person with rigidity and bradykinesia tends to not swing his or her arms
when walking. Rigidity can be uncomfortable or even painful.
Postural Instability
One of the most important signs of Parkinson’s is postural instability, a
tendency to be unstable when standing upright. A person with postural
instability has lost some of the reflexes needed for maintaining an upright
posture, and may topple backwards if jostled even slightly. Some develop a
dangerous tendency to sway backwards when rising from a chair, standing or
turning. This problem is called retropulsion and may result in a backwards fall.
understanding parkinson’s 13
People with balance problems may have particular difficulty when pivoting or
making turns or quick movements.
Doctors test postural stability by using the “pull test.” During this test, the
neurologist gives a moderately forceful backwards tug on the standing
individual and observes how well the person recovers. The normal response is
a quick backwards step to prevent a fall; but many people with Parkinson’s are
unable to recover, and would tumble backwards if the neurologist were not
right there to catch him or her.
Stress does not cause PD, but stress of any kind can briefly worsen its
symptoms. The increase in symptoms experienced during stressful situations is
temporary and will resolve after the stress is relieved.
There are several ways to lessen the risk of falls. For example, sometimes a
simple medication change can help. Others may benefit from gait training.
Devices, such as canes and walkers, can be helpful for some people. Even
when a cane is unnecessary for balance, it sends a signal for crowds to allow
space for a person with PD. People with Parkinson’s should avoid climbing or
descending stairs while carrying packages in both hands. Certain treacherous
understanding parkinson’s 15
or pulling sensations that seem to involve their inner organs, and occur when
their medications wear off. Headache, a common cause of pain in the general
population, is rare in Parkinson’s.
People who suffer from pain should take note of any relationship between
their discomfort and the Parkinson’s medication schedule. If the pain occurs
mostly when medication has worn off, it is most likely a manifestation of “off”
rigidity or “off” dystonia.
For the most part, pain in PD is treatable. Depending on the cause of the pain,
treatment may consist of adjustments in anti-Parkinson medication, physical
therapy, anti-inflammatory agents or other types of pain medication. For
severe dystonia, injections of the muscle relaxant botulinum toxin (BOTOX®,
Myobloc®, Xeomin®) may be dramatically effective. For pain that occurs in the
unmedicated “off” state, the best solution is to increase “on” periods through
medication adjustment. All individuals who experience persistent pain should
inform their neurologist.
For more information:
Download our fact sheet “Pain in PD” at Parkinson.org/FactSheets.
View our Expert Briefing webinar: “Pain in PD” at Parkinson.org/ExpertBriefings.
You can also request more information by calling 800-4PD-INFO.
Non-motor Symptoms
What are non-motor symptoms of PD?
Most people with Parkinson’s experience non-motor symptoms, those that
do not involve movement, coordination, physical tasks or mobility. While a
person’s family and friends may not be able to see them, these “invisible”
symptoms can actually be more troublesome for some people than the motor
impairments of PD.
motor function is poorer and their medications do not work as well. They may
experience more mobility problems, wearing-off and dyskinesias and may
experience intolerable daytime drowsiness, a concern for those who drive.
Individuals who are taking sedatives may actually find that their sleep problems
worsen and so medication changes should be discussed with their doctors.
The first step to solving constipation is to increase fiber and fluid intake.
For some people, this means a major dietary overhaul, which requires discipline
and support. Efforts to become more active will help constipation. Stool
softeners are also useful. Laxatives are available if conservative measures
do not work, but it is important to use these agents correctly under the
supervision of a physician.
For nighttime frequency, it is wise to omit fluid in the evening and to avoid
caffeine in any form. It is important to note that many of the medications
for incontinence may cause memory difficulties, a factor that needs to be
considered in people with Parkinson’s with cognitive problems.
For more information download our fact sheet “Urinary Problems in Parkinson’s
Disease” at Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
understanding parkinson’s 21
Learn more about these side effects and medications on pages 30 and 31.
This condition can put people with Parkinson’s at risk of fainting, losing
balance, falling, and being injured. To reduce the risk of nOH, it is important
to avoid dehydration. People with PD should ask their doctor to identify
understanding parkinson’s 23
medications that may lower blood pressure, and see if a change in dose is
indicated. Also, avoid abrupt changes in position. Medicinal approaches may
include midodrine (ProAmatine®), fludrocortisone (Florinef®), pyridostigmine
(Mestinon®) or droxidopa (Northera®).
For more information, download our fact sheet “Neurogenic Orthostatic
Hypotension” at Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
Cognitive problems can have a major impact on quality of life, and should be
discussed with a neurologist. For some people, reducing the dose of Parkinson’s
medications can help to improve mental clarity. Engaging in mental games and
problem-solving can help to exercise the mind. There are several medications
available to treat dementia, mainly borrowed from the Alzheimer’s treatment
trials. For example, rivastigmine tartrate (Exelon®) is approved for treatment
understanding parkinson’s 25
chapter two
Treating
Parkinson’s
Finding a doctor
How can a person find a doctor who is knowledgeable
about Parkinson’s?
Finding the right physician is important. Treating Parkinson’s requires a team
approach involving not only the person living with Parkinson’s, but also family
members, the physician and other healthcare professionals. Every person has
different Parkinson’s issues, vulnerabilities and needs.
The Parkinson’s Foundation maintains that people with Parkinson’s are best
served by a movement disorder specialist who is an expert in all aspects of
the disease, knowledgeable regarding the full range of treatment options,
and familiar with the cutting edge of clinical and scientific research. The ideal
Parkinson’s physician is available to provide advice and care, and is responsive
during times of need.
Some people with Parkinson’s may not have a specialist in their immediate
geographic area. When a person cannot find a local expert, it may be
worthwhile to travel once or twice a year to see a specialist who can work
together with the local general neurologist to provide the best care possible.
To find a Parkinson’s specialist, a person can solicit recommendations from
other people living with PD, such as members of a local support group, or
28 frequently asked questions
can call his or her health care provider and ask for a list of specialists in
the covered network. The foundation also maintains a list of Parkinson’s
specialists around the US. Please call our Helpline at 800-4PD-INFO or email
[email protected] for assistance.
For more information:
Download our fact sheet “Seeking Out a Specialist” at Parkinson.org/FactSheets.
Listen to our Substantial Matters Podcast #30: Team Care for PD:
Why It’s Important at Parkinson.org/Podcast.
You can also request more information by calling 800-4PD-INFO.
For many people, the choice of medication is dictated by side effects and
tolerability. While the ideal medication program is simple, for some individuals,
the medication schedule can become quite complicated, with multiple agents
taken around the clock. The goal of treatment — to keep a person functioning
and enjoying life at the highest level — is the same at every stage of the
disease. It is important to note that medications work best when they are
taken on a regular schedule, and when combined with exercise, good nutrition
and adequate sleep.
Levodopa
The most potent medication for Parkinson’s is levodopa. Its development in
the late 1960s represents one of the most important breakthroughs in the
history of medicine. Plain levodopa produces nausea and vomiting. It is now
combined with carbidopa to prevent this side effect. The well-known combined
carbidopa/levodopa formulation is called Sinemet®.
Dopamine Agonists
Dopamine agonists are drugs that stimulate the parts of the human brain
influenced by dopamine. In effect, the brain is tricked into thinking it is
receiving the dopamine it needs. In general, dopamine agonists are not
as potent as carbidopa/levodopa, and therefore are less likely to cause
dyskinesias. Dopamine agonists can be taken alone or in combination with
medications containing levodopa. The two most commonly prescribed oral
pill agonists in the US are pramipexole (Mirapex) and ropinirole (Requip).
A third, rotigotine transdermal system (Neupro®), is available in a patch form.
Bromocriptine (Parlodel® ) is available, but is less commonly used.
COMT Inhibitors
COMT inhibitors such as entacapone (Comtan®) and tolcapone (Tasmar®)
represent the newest class of Parkinson’s medications. These agents have
no direct effect on PD symptoms, but are used to prolong the effect of
levodopa by blocking its metabolism. COMT inhibitors are used primarily to
help with the problem of wearing-off, in which the effect of levodopa becomes
short-lived. People who take Tasmar must have regular liver function blood
tests. Entacapone is not only a COMT inhibitor, but is also one of the main
ingredients in Stalevo.
treating parkinson’s 31
MAO-B Inhibitors
The two MAO-B inhibitors — selegiline (also called deprenyl, with trade
names Eldepryl® and Zelapar®) and rasagiline (Azilect®) — block an enzyme
in the brain that breaks down levodopa. These drugs have a modest effect in
suppressing the symptoms of PD. They have been shown to delay the need for
Sinemet when prescribed in the earliest stage of Parkinson’s, and have been
approved for use in later stages of PD to boost the effects of Sinemet.
Amantadine
Generic amantadine medication is used for off-label treatment of Parkinson’s
dyskinesia. The only FDA approved extended-release amantadine treatment,
Gocovri™, was approved for treating Parkinson’s dyskinesia that occurs with
dopamine medication. Generic amantadine is a well tolerated drug, but its
potential side effect include dry mouth, constipation, bladder problem, ankle
swelling and skin rash.
Anticholinergics
Anticholinergics can be helpful for tremor and may ease dystonia associated
with wearing-off or peak-dose effect. They have little effect on other symptoms
of Parkinson’s. The drugs in this class include trihexyphenidyl (Artane®) and
benztropine mesylate (Cogentin®) among others. They do not act directly on
the dopaminergic system. Instead, they decrease the activity of acetylcholine, a
neurotransmitter that regulates movement. Potential adverse effects include
blurred vision, dry mouth, constipation and urinary retention. Older individuals
are susceptible to confusion and hallucinations on anticholinergics, so these
agents should be avoided in individuals over the age of 70.
For more information:
Request a copy of our resource book: Medications at Parkinson.org/Books.
Download our fact sheets “Medications On Time, Every Time,” “Maximizing PD
Medications” and “Medications and Schedule” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinars: “Medication Side Effects,” and
“Maximizing PD Medications: Get the Most Out of Your Treatment Plan” at
Parkinson.org/ExpertBriefings.
Listen to Substantial Matters Podcast #6: New Levodopa Delivery Methods for
Parkinson’s at Parkinson.org/Podcast.
You can also request more information by calling 800-4PD-INFO.
32
Some experts advocate early treatment with levodopa because the drug is the
most effective at suppressing the symptoms of Parkinson’s. Others contend
that dopamine agonists are nearly as effective as levodopa in improving
quality of life, especially in the early stages of PD. Dopamine agonists appear
less likely to provoke fluctuations and dyskinesias, two long-term complications
of treating PD. Still others argue that the wearing-off spells and fluctuations
would occur anyway because they reflect the progression of disease.
During DBS, electrodes are inserted into a deep brain region, using MRI and
neurophysiological mapping to ensure accurate placement. DBS can be
directed to different parts of the brain, including the subthalamic nucleus,
globus pallidus and thalamus, all crucial regions for mobility and tremor
control. The choice of target depends upon a person’s symptoms.
34 frequently asked questions
DBS Targets
In recent years, the subthalamic nucleus has become the preferred target
in the majority of people with Parkinson’s. For those who have symptoms
on both sides of the body, the surgery must be performed on both sides of
the brain. A device called an implantable pulse generator or IPG (similar to a
pacemaker) is inserted under the collarbone to provide a continuous electrical
current to a part of the brain involved in motor function. After the surgery is
performed, the person must return to the medical center at regular intervals
for programming of the implanted device. Individuals are given a hand-held
device, similar to a television remote control, which allows them to check the
battery and to turn their device on or off. An IPG battery lasts for about three
to five years and is relatively easy to replace under local anesthesia.
Effects of DBS
As with medications, surgery for Parkinson’s is not a cure. But, when used on
eligible individuals, it is very effective in suppressing some symptoms, including
tremor, bradykinesia and rigidity. Wearing-off spells and dyskinesias can also
be significantly reduced. Some people with PD can decrease medication intake
by 50 percent or more. Unfortunately, surgery does not help balance or gait
freezing and has limited effects on speech or posture — all symptoms that
may worsen as the disease progresses.
Who is a candidate for DBS?
Not every person with Parkinson’s is a good candidate for surgery. The ideal
candidate is responsive to individual doses of levodopa but has reached a
stage associated with wearing-off spells or dyskinesias. The individual should
have no cognitive or emotional impairment and must be in good general
health. People with forms of parkinsonism that respond poorly to levodopa
or who experience cognitive or emotional difficulties, such as dementia,
depression, apathy or anxiety, will not benefit from surgery.
Surgery for PD is best performed at a center with established expertise in
these advanced techniques. The ideal center is one that has neurosurgeons
who are trained in DBS surgery and a dedicated team of personnel available
for screening, post-operative care and programming of the deep brain
stimulator. It is important that a person with PD who is considering surgery
be well-informed about the procedures and realistic in his or her expectations.
An effective support system of family or friends is essential to help the person
cope with the emotional demands of the surgery.
For more information, request your copy of our resource book:
Guide to Deep Brain Stimulation at Parkinson.org/Books.
You can also request more information by calling 800-4PD-INFO.
treating parkinson’s 35
Speech therapists can help with vocal training programs including certain
programs that are tailored to the needs of people with Parkinson’s. For
example, the Lee Silverman Voice Treatment® (LSVT®) technique is aimed
36 frequently asked questions
None of these techniques have been rigorously tested in treating PD. There
is no scientific evidence that acupuncture, hypnosis or massage therapies
have any effect on the disease itself, although people with PD report they can
temporarily provide relief from aching muscles and certain PD symptoms.
Alternative physical activities, such as yoga and Tai Chi, encourage disciplined
movements and rigorous posture, and like conventional forms of exercise,
appear to be of benefit to individuals who can practice them.
vitamin D, which is essential for bone health. Some research has indicated that
vitamin D levels are low in people with PD.
People who stretch, bend and move about during the day achieve consistent
results. New research suggests that intense, complex exercise (walking on a
treadmill or running) also has benefits for PD symptoms.
Popular options for exercise include dancing, Tai Chi, walking, boxing and
swimming. Individuals with gait difficulties or balance impairment can be
helped by performing specific exercises. A physical therapist can help design
an appropriate program. Strategies to break out of freezing episodes and
to prevent backwards falling can be developed. There are also many classes,
books and videos on exercises for PD. In order to have physical therapy covered
under Medicare or insurance, a doctor must “prescribe” it. It is essential to
practice physical activities after a course of therapy is finished.
For more information:
Download our fact sheet “Exercise and Parkinson’s” at Parkinson.org/FactSheets.
Request your copy of our resource book Fitness Counts at Parkinson.org/Books.
You can also request more information by calling 800-4PD-INFO.
38 frequently asked questions
The best plan is to maintain a full diet with all of the daily nutritional
requirements. Certain habits may help with this goal. Some people who take
levodopa, for example, may find that a protein meal will inactivate a dose of
medication. Limiting protein intake or staggering the medication dosing to
avoid conflicts with meals can help solve this problem.
Other tips:
• To be most effective, levodopa preparations should be taken up to an hour
before meal- times on an empty stomach or with a dry cracker or toast.
• To prevent constipation, it’s important to eat fresh fruits and vegetables,
which provide fiber, drink plenty of fluids and get regular exercise.
• For people who experience difficulty swallowing, a diet of soft foods that
supplements nutrients may be recommended. Adding thickening agents to
thin liquids may also be recommended.
• People with Parkinson’s who progressively lose weight for no clear reason
should bring this symptom to the attention of their physician, and undergo
a thorough medical evaluation.
For more information:
Download our fact sheet “Nutrition and Parkinson’s” at Parkinson.org/FactSheets.
View our Parkinson’s Expert Briefing webinar: “Nutrition and Parkinson’s Disease”
at Parkinson.org/ExpertBriefings.
Listed to our Substantial Matters podcast #4: The Importance of Good Nutrition
for People with Parkinson’s at Parkinson.org/Podcast.
You can also request more information by calling 800-4PD-INFO.
39
chapter three
Living with
Parkinson’s
Finding Support
How can people with Parkinson’s find a local support group?
Support groups can provide a place to share similar experiences and tips for
living with Parkinson’s. Some groups provide general support, while others
focus on special populations, such as those living with young onset PD or care
partners. Support groups may provide educational programs and organize
members to raise awareness on a local level.
Staying Independent
Is special equipment recommended to help people with Parkinson’s?
For those who have problems with mobility and balance, a walking device, such
as a cane or walker, can help to avoid a fall. These devices provide support and
serve as a reminder to step deliberately. There are many models of walkers
available, differing in the number and size of wheels, the type of brakes, the
amount of support, seats and baskets. Some walkers have a laser beam
display to “cue” stepping for people who experience freezing.
Another suggestion is to find the closest Area Agency on Aging office through
the Eldercare Locator Service at www.eldercare.gov or 800- 677-1116. This
resource links seniors to financial aid and related programs. Such programs
include assisting individuals with referrals and/or applications for food
stamps, Meals-on-Wheels, Medicaid/Medicare, Low Income Energy Assistance
programs, low cost senior housing options and more.
The general rule is that when family members feel concerned about their loved
one’s driving, it is time to evaluate the situation. Doctors are not required
to report the Parkinson’s diagnosis to motor vehicle bureaus, but they can
insist on a driving test. If everyone agrees that an individual with Parkinson’s
is a potential driving risk, it is time to turn over the keys to a spouse, family
member or friend.
For more information, download our fact sheet “Driving and Parkinson’s” at
Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
Some people may no longer wish to perform tasks of daily living and may
actually be suffering from depression and apathy. It is important that this
be recognized as separate from the physical challenges of Parkinson’s and
discussed with the neurologist, since medication or therapy may be necessary.
For more information, download fact sheets “Adding Family, Friends &
Volunteers to Your Caregiving” and “How to Talk With Your Family About
Parkinson’s” at Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
living with parkinson’s 43
chapter four
Parkinson’s
Research:
chapter xx
Title
The Future
Drug Discovery & Development
Are there any new drugs on the horizon for Parkinson’s?
Research into new treatments for Parkinson’s is part of the fight against this
disease. There are always several promising new pharmaceutical compounds
“in the pipeline” of discovery or development. New surgical approaches and
gene therapies for Parkinson’s are also currently being tested. Unfortunately,
it takes a very long time for new therapies to go through the testing and
approval process, and not all novel treatments prove successful.
The Research Process begins with development of a new compound in the lab,
continues with the three phases of clinical research, and concludes with approval by the
US Food and Drug Administration
Average 14 years from discovery to drug store
RESEARCH IDEAS
CLINICAL TRIALS
SCIENTIFIC RESEARCH NEW
PHASE I, II, III, IV
Laboratory Studies TREATMENTS
Studies in Humans
6.2 Years 1.5 Years
6.5 Years
FDA Approval
Sometimes, the FDA requires more extensive drug testing than the
manufacturer anticipated, which can delay the process by years. For people
who live with Parkinson’s, the pace of new advances in treatment is never
fast enough. But safety is a top priority, and the FDA’s painstaking efforts to
ensure that a new treatment is effective and safe are justified.
NIH Clinical Research Trials and You, found at www.nih.gov,
is an online resource to help people learn more about clinical trials,
why they matter and how to participate.
What is neuroprotection?
Neuroprotection is the term used to describe treatment that may slow down,
stop or reverse the progression of a brain disease by repairing brain cells and
preventing them from being lost, or encouraging new ones to grow. Although
researchers are attempting to develop neuroprotective agents for Parkinson’s
disease, no such therapy is currently proven to be clinically effective.
46 frequently asked questions
Selegiline and rasagiline have been studied for neuroprotective effects but
the evidence to date has not been conclusive. Some people with PD have used
over-the-counter antioxidant vitamins, such as vitamin C, with the goal of
slowing the progression of PD. Recent studies of coenzyme Q10 and creatine
conducted by the National Institutes of Health (NIH) found low likelihood that
the substances delay the progression of Parkinson’s. There is also interest
in the potential of exercise to be neuroprotective for PD. Researchers are
studying forms of exercise (dance, running, walking) to learn more.
In the majority of trials, the medical care and study medication is provided to
participants for free. People who participate in clinical research tend to receive
closer attention and more frequent evaluations than people with PD in routine
clinical practice. Participating in clinical trials provides people with Parkinson’s
with the opportunity to receive excellent care while helping to bring drugs to
the market more quickly.
Parkinson’s Research: The Future 47
Brain donation is a lasting contribution to science. Yet, for some people it may
bring up many difficult questions and concerns.
Additionally, finding the right donation program is not always easy. There are
several programs that accept donations from people with Parkinson’s, but
each has different requirements regarding eligibility and participation.
If a person with Parkinson’s decides that brain donation is the right decision,
it is best for him or her to contact the closest brain donation program to ask
more questions. A list of local brain donation programs may be available from
an individual’s treating neurologist. Call the Parkinson’s Foundation Helpline
at 800-4PD-INFO for a list of organizations that accept brain tissue and their
program information.
For more information, download our fact sheet “Brain Donation”
at Parkinson.org/FactSheets.
You can also request more information by calling 800-4PD-INFO.
48 frequently asked questions
For people living with Parkinson’s disease and their families, the progress
is always too slow. But there are reasons to be optimistic. It is anticipated
that many scientific advances will be translated into benefits for people
with Parkinson’s, and so the hope for a cure is linked with true promise and
great optimism.
About the Parkinson’s Foundation
The Parkinson’s Foundation makes life better for people with Parkinson’s
disease by improving care and advancing research toward a cure.
In everything we do, we build on the energy, experience and passion
of our global Parkinson’s community. A wealth of information about
Parkinson’s and about our activities and resources is available on our
website, Parkinson.org.
The information contained in this publication is provided for informational and educational
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A Guide to Parkinson’s Disease