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What
Is Parkinson's Disease
Parkinson's disease ! a degenerative
disorder of the central nervous system ! is diagnosed in 50, 000
Americans every year. In addition, more than a million people in the
United States currently live with the illness. Parkinson's disease
affects nerve cells (neurons) in the part of the brain that controls
muscle movement, leading to symptoms such as trembling, rigidity,
difficulty walking and problems with balance and
coordination.
In about 5 percent to 10 percent of cases,
Parkinson's disease begins before age 50. But for most people, the
first symptoms develop after age 50, and the likelihood of
developing Parkinson's disease continues to increase with
age.
Parkinson's disease is progressive,
meaning the symptoms become worse over time. Although the disease
may eventually be disabling, signs and symptoms usually develop
gradually and most people have many years of productive living after
a diagnosis.
Furthermore, unlike other serious
neurological diseases, such as Lou Gehrig and Huntington's disease,
Parkinson's disease is treatable. For decades, the drug levodopa,
commonly known as L-dopa, was the mainstay of Parkinson's disease
treatment. But now newer drugs, including dopamine agonist
medications, are also used ! either alone or in combination with
levodopa.
In addition, experiments using surgically
transplanted stem cells, fetal nerve cells or genetically engineered
cells to replace lost or damaged neurons are ongoing. In the past 10
years, some people with Parkinson's have regained their mobility
after receiving transplanted fetal neurons. But this procedure,
which is still in the experimental stages, only appears to benefit
people under age 60 and may cause severe side effects in some
people.
Deep brain stimulation (DBS) is another
form of surgical therapy for Parkinson's disease that has had
encouraging results. It involves implanting a brain stimulator,
similar to a heart pacemaker, in an area of the brain called the
thalamus. It has been used for the past decade to treat parkinsonian
tremor, and researchers believe that implanting this device in a
part of the brain called the subthalamic nucleus may help treat
other aspects of parkinsonism as well.
But for now, recognizing the signs and
symptoms of Parkinson's disease and seeking early diagnosis are
essential to beginning appropriate treatment and managing symptoms
for as long as possible.
Signs and
Symptoms
The earliest sign of Parkinson's disease
can be as subtle as an arm that doesn't swing when you walk, a mild
tremor in the fingers of one hand or soft, mumbly speech that's
difficult to understand. You also may have such symptoms as a lack
pep, depression or trouble sleeping. Or you may notice that it takes
you longer to shower, shave, eat or do other routine tasks.
Other signs of Parkinson's disease may
include:
- Tremors. Tremors often start with a slight shaking in
one finger that later may spread to your whole arm. Sometimes
tremors in your hand cause a back and forth rubbing of the thumb
and forefinger known as pill rolling. You also may develop tremors
in your head, lips or feet. These symptoms may occur on one or
both sides of your body and may be more noticeable when you're
under stress. Although tremors can be very distressing, they're
usually not disabling and often disappear during sleep.
- Slowed motion (bradykinesia). Over time people with
Parkinson's disease may develop a slow, shuffling walk with an
unsteady gait and stooped posture. They also may have a tendency
to fall. In the later stages of the disease, their muscles may
freeze up, making it hard to resume normal movement. This is
especially distressing because it can make performing the simplest
tasks difficult and time-consuming. Even the functioning of the
digestive tract may slow down, causing problems with swallowing,
digestion and elimination. In fact, constipation
is often a major problem for people with Parkinson's disease.
- Rigid muscles. Muscle stiffness (rigidity) often occurs
in the limbs and neck. Sometimes the stiffness can be so severe
that it limits the size of movements. For example, the handwriting
of people with Parkinson's disease often becomes extremely small.
- Loss of automatic movements. Blinking, smiling and
swinging your arms when you walk are all unconscious acts that are
part of human behavior. In Parkinson's disease, these acts tend to
be lost. Sometimes people may develop a fixed staring expression
and unblinking eyes ! the so-called facial masking of Parkinson's
disease. And instead of gesturing while talking, some people may
lack animation when they speak.
- Impaired speech. Many people with Parkinson's disease
have some trouble speaking, and the voice often becomes monotonous
and very soft. This may be a special problem for older adults
because the soft voice of a person with Parkinson's disease may
not be audible to a spouse with poor hearing.
Causes
In the nearly 200 years since Parkinson's
disease was first described, researchers have come to understand
some of the processes of this complex disorder. They now know that
Parkinson's disease occurs when certain neurons in an area of the
brain called the substantia nigra are damaged or destroyed.
Normally, these nerve cells release dopamine ! a chemical that
transmits signals between the substantia nigra and another part of
the brain, the corpus striatum. These signals cause your muscles to
make smooth, controlled movements.
Everyone loses some dopamine-producing
neurons as a normal part of aging. But people with Parkinson's
disease lose at least 60 percent of neurons in the substantia nigra.
Just what causes this is a subject of intense research. Right now
scientists believe Parkinson's disease may result from a combination
of genetic and environmental factors. Certain drugs, diseases and
toxins also may cause symptoms similar to those of Parkinson's
disease.
Genetic factors
Until recently, scientists believed that
genes mainly played a role in an unusual type of Parkinson's disease
that affects young people. But new research also shows a strong
genetic component in older adults. In fact, studies have revealed
that people who have a first-degree relative with Parkinson's
disease ! such as a parent, sibling or child ! are at three times
greater risk of developing the disease themselves, regardless of
their age. Furthermore, one study found that having two first-degree
relatives with Parkinson's disease can increase risk as much as 10
times.
Environmental
factors
Studies show that people exposed to
herbicides and pesticides are three times more likely to develop
Parkinson's disease than people who don't have this exposure. The
problem, however, is that so far no one has been able to connect a
specific herbicide or pesticide to the disease.
In one recent study, a combination of the
herbicide paraquat and the fungicide maneb ! chemicals commonly used
together on crops throughout the United States ! was found to damage
the same part of the brain in mice that is affected in people with
Parkinson's disease. Unfortunately, this study doesn't provide
conclusive evidence that combined paraquat and maneb cause
Parkinson's disease.
Medications
A number of drugs can cause symptoms of
Parkinson's disease. These include medications such as haloperidol
(Haldol) and chlorpromazine (Thorazine), which are prescribed for
certain psychiatric disorders, and drugs used to treat nausea, such
as metoclopramide (Reglan) and prochlorperazine
(Compazine).
The epilepsy drug valproate (Depacon) also
may cause some of the features of parkinsonism. In fact, this drug
is notorious for producing tremors, although these tremors are a
little different from those seen in Parkinson's disease.
Toxins
Exposure to toxins such as manganese dust
or the chemical MPTP ! a byproduct of heroin production ! can lead
to parkinsonism. Scientists first became aware of MPTP-induced
parkinsonism in the 1980s when heroin addicts using a street drug
contaminated with MPTP developed all the symptoms of Parkinson's
disease. Still, toxin-related cases are extremely rare.
Risk
Factors
Age is one of the main risk factors for
Parkinson's disease. Although the disease can affect adults in their
20s, it ordinarily starts in middle or late life, and the risk
continues to increase with age. Some researchers theorize that
people with Parkinson's disease may have neural damage from genetic
or environmental factors that becomes worse with aging.
Heredity also appears to play a role in
Parkinson's disease. Recent studies have shown that people with a
parent, sibling or child with the disease have a three times greater
risk of developing the disease themselves. Those with two or more
close relatives with Parkinson's disease have a 10 times greater
risk of also developing the disease.
In addition, people who are exposed to
herbicides and pesticides are at increased risk. Studies also
suggest that people who are involved in farming, live in a rural
area or drink well water are more likely to develop the disease. But
these factors may ultimately be linked to herbicide and pesticide
exposure as well.
New studies also indicate that reduced
estrogen levels may increase the risk of Parkinson's disease. This
means that menopausal women who receive little or no hormone
replacement therapy (HRT) and those who have had hysterectomies may
be at higher risk. Menopausal women using HRT appear to have a
decreased risk.
Complications
Many people with Parkinson's disease
experience some degree of depression ! both because of the emotional
toll of living with their illness and brain chemical deficiencies
that are a part of the disease. In addition, as many as a third of
people with Parkinson's disease eventually develop dementia, a
condition that can include memory loss and impaired judgment as well
as personality changes.
Medications for Parkinson's disease also
may cause a number of complications, including involuntary twitching
or jerking movements of the arms and legs (dyskinesias),
hallucinations, sleepiness and a drop in blood pressure when
standing up (orthostatic hypotension).
Other complications of Parkinson's disease
include:
- Difficulty chewing and swallowing. In the later stages
of the disease the muscles used in swallowing may be affected.
- Urinary problems. Some people with Parkinson's disease
may experience urinary incontinence while others may have trouble
urinating. Certain medications used to treat the disease,
especially anticholinergic drugs, also can cause urinary
retention.
- Constipation. Many people with Parkinson's disease
develop constipation because the digestive tract works more
slowly. Constipation may also be a side effect of medications used
to treat the disease.
- Sleep problems. People with Parkinson's disease often
have no problem falling asleep, but they may wake up frequently
throughout the night. They also may experience restless sleep and
even act out their dreams (REM sleep behavior disorder).
- Sexual dysfunction. Some people with Parkinson's
disease may notice a decrease in sexual desire (libido). In some
cases this may result from a combination of psychological and
physical factors. In others, it may be a direct result of the
disease.
Treatment
No standard treatment exists for the
earliest symptoms of Parkinson's disease. Some doctors may begin
drug treatment at the first signs of the disease. Others may delay
this form of treatment until symptoms become more pronounced.
Depending on your symptoms, your doctor first may try lifestyle
changes, such as diet, exercise and physical therapy.
Physical therapy can be extremely helpful
for people with Parkinson's disease ! both in the early stages and
later, as the disease progresses. It can help improve mobility,
range of motion and muscle tone. Although specific exercises can't
stop the progress of the disease, improving muscle strength can help
you feel more confident and capable. A physical therapist also can
work with you to improve your gait and balance and can help
strengthen muscles to make speaking and swallowing
easier.
When lifestyle changes are no longer
enough, your doctor will likely recommend certain medications,
either alone or in combination.
Medications
Medications are primarily used to help
manage problems with walking, movement and tremors by increasing the
brain's supply of dopamine. But drug therapy can have serious side
effects, and the dosage and timing of medications need to change as
your symptoms do. For these reasons, you and your doctor will work
together to design a program that best suits your needs, especially
as the disease progresses. The medications used to treat Parkinson's
disease include:
- Levodopa. Since it's introduction in the 1960s,
levodopa has been considered the gold standard drug therapy for
Parkinson's disease. Levodopa is the formulation of a chemical
found in plants and animals that is converted into dopamine by
nerve cells in the brain. The increase in dopamine may reverse
many of the disabling symptoms of Parkinson's disease, but as time
passes, side effects may increase and adjustments of the doses
will be necessary.
Treatment with dopamine itself isn't
possible, because dopamine doesn't cross the body's blood-brain
barrier. This is a meshwork of tightly packed cells in the walls
of the brain's capillaries that screen out certain substances.
Levodopa, on the other hand, does cross this barrier, but only a
small amount actually reaches the brain. Combining levodopa with
another drug, carbidopa (Sinemet), causes more levodopa to get to
the brain and helps reduce some of the side effects of this
therapy. Sinemet CR is a prolonged-release version of this
drug.
During early treatment side effects from
levodopa therapy are usually not a major problem. But as the
disease progresses, the drug works less evenly. As a result some
people may experience involuntary movements (dyskinesias),
especially when the medication is having its peak effects. Waxing
and waning of the response to the drug (wearing off effects) is
also common. This means that the period time that each dose is
effective begins to decrease, leading to more frequent doses.
Other side effects may include hallucinations, a drop in blood
pressure ! especially in the standing position ! and nausea.
Still, levodopa often allows people with Parkinson's disease to
extend the time they're able to lead relatively normal lives and
in many cases is effective for a number of years.
- Dopamine agonists. Unlike levodopa, these drugs aren't
changed into dopamine. Instead, they mimic the effects of dopamine
in the brain and cause neurons to react as though sufficient
amounts of dopamine were present. Dopamine agonists are primarily
used as adjuncts to levodopa therapy, but they are sometimes used
initially in early Parkinson's disease, especially in younger
adults. The side effects of dopamine agonists are similar to those
of levodopa. This class of drugs includes the older dopamine
agonists, bromocriptine (Parlodel) and pergolide (Permax) and the
newer drugs, pramipexole (Mirapex) and ropinirole (Requip). You
should not use dopamine agonists if you already have experienced
hallucinations or confusion.
- Selegiline (Carbex, Eldepryl, Atapryl). This drug, used
as an adjunct to levodopa therapy, helps prevent the breakdown of
both naturally occurring dopamine and dopamine formed from
levodopa. It does this by inhibiting the activity of the enzyme
monoamine oxidase B (MAO-B) ! the enzyme that metabolizes dopamine
in the brain. At one time it was thought that this drug might slow
the progression of Parkinson's disease, but this now appears not
to be the case. Toxic reactions have occurred in some patients who
took selegiline with the narcotic drug, meperidine (Demerol).
- COMT inhibitors. A newer class of drugs, COMT
inhibitors prolong the effect of levodopa therapy by blocking an
enzyme that breaks down dopamine in the liver and other organs.
Tolcapone (Tasmar) is a potent COMT inhibitor that easily crosses
the blood-brain barrier and in clinical trials reduced the amount
of levodopa needed by 25 percent. But because Tasmar has been
linked to liver damage and liver failure, the drug is normally
only used in people who are not responding to other therapies.
Entacapone is a milder COMT inhibitor that may help manage
fluctuations in the response to levodopa in people with
Parkinson's disease.
- Anticholinergics. These drugs were the main treatment
for Parkinson's disease before the introduction of levodopa. In
general, they help control tremors in the early stages of the
disease. Even so, they are only mildly beneficial and sometimes
the benefits are offset by side effects such as dry mouth, nausea,
urine retention ! especially in men with an enlarged
prostate ! and severe constipation. Anticholinergics can also
cause mental problems, including memory loss, confusion and
hallucinations. A number of anticholinergic drugs, such as
trihexyphenidyl (Artane) and benztropine (Cogentin), are currently
available. The antihistamine diphenhydramine (Benadryl) and
antidepressants such as amitryptilline (Elavil) work much like
anticholinergics and may be used in older adults who can't
tolerate anticholinergics themselves.
- Amantadine (Symmetrel). This antiviral drug may be
prescribed for people in the latter stages of Parkinson's disease,
especially if they have problems with involuntary movements
induced by levodopa (dyskinesias). Side effects include swollen
ankles and a purple mottling of the skin.
If you're using medications for
Parkinson's disease, it's extremely important not to stop taking
them on your own. If you're troubled by side effects or any other
problems, talk to your doctor.
Surgery
Surgical procedures were once commonly
used to treat Parkinson's disease, but fell out of favor with the
advent of levodopa and other drug therapies. Now, surgical
approaches are being re-evaluated. The following procedures may be
an option when symptoms can't be controlled with medications:
- Thalamotomy. This procedure has been used for years to
reduce tremors in people with Parkinson's disease. Thalamotomy
involves the destruction of small amounts of tissue in the
thalamus ! a major brain center for relaying messages and
transmitting sensations. But because the surgery can cause extreme
weakness and slurred speech if it's performed on both sides of the
brain, the benefits are usually confined to one side of the body.
- Pallidotomy. There has been renewed interest in
pallidotomy since improved imaging techniques have allowed
surgeons to pinpoint the areas to be treated with greater
precision. In this procedure, an electric current is used to
destroy a small amount of tissue in the globus pallidus, a part of
the brain responsible for many symptoms of Parkinson's disease.
Pallidotomy may improve tremors, rigidity and slowed movement
(bradykinesia) by interrupting the neural pathway between the
globus pallidus and the thalamus. It may also counter the
involuntary movements (dyskinesias) caused by drug therapy.
But although pallidotomy has been
helpful for some aspects of Parkinson's disease in certain people,
it's not a cure, and in many cases benefits may not last. In
addition, the surgery carries a number of risks, including slurred
speech, disabling weakness and vision problems, especially when
performed on both sides of the body.
- Deep brain stimulation. In 1997, the Food and Drug
Administration approved a new brain implant device that can help
control the disabling shaking and trembling caused by Parkinson's
disease. The deep brain stimulator (DBS) consists of a
pacemakerlike unit implanted in the chest that transmits
electrical pulses through a wire to an implant in the thalamus.
The pulses appear to interrupt signals from the thalamus that may
play a role in causing tremors. Potential risks exist with the
DBS, including infection caused by the wire connecting the
electrode to the stimulator and the need to perform minor surgery
to change the unit's battery.
More recently, deep brain stimulation
has been extended to other brain areas, particularly the
subthalamic nucleus. Simulation within this brain center may
markedly improve many aspects of parkinsonism.
Experimental
treatments
Although researchers continue to work to
develop new drug treatments for Parkinson's disease, great interest
also exists in finding a way to replace the dopamine-producing cells
in the substantia nigra. One approach has been fetal cell
transplantation ! a procedure in which fetal cells are implanted
into the brains of people with Parkinson's.
Unfortunately, one large study, published
in the March 8, 2001, issue of the New England Journal of
Medicine, suggested that fetal cell implants only benefit people
under age 60. Furthermore, about 15 percent of study participants
later developed severe involuntary movements (dyskinesias) as a
result of too much dopamine.
In addition, the use of fetal cells raises
a number of moral and ethical issues that will not be easily
resolved. The answer, many researchers believe, is the use of
embryonic stem cells.
Stem cells are the parent cells of all
tissues in the body. To date, researchers have been able to capture
and culture undifferentiated human stem cells in the laboratory. The
hope is that they may one day be able to direct these cells to
become specific types of cells ! such as dopamine-producing neurons
! that can be used to treat disease. Stem cells used in research are
derived from embryos that were produced in a laboratory to treat
infertility, and they are used only with the informed consent of the
donors.
Researchers are also investigating genes
that code proteins responsible for producing dopamine, drugs that
block the action of glutamate ! an amino acid that destroys nerve
cells ! and the role of the antioxidant coenzyme Q-10 in stopping
the progression of Parkinson's disease.
Self-Care
If you've received a diagnosis of
Parkinson's disease, you'll need to work closely with your doctor to
find a treatment plan that offers you the greatest relief from
symptoms with the fewest side effects. Certain lifestyle changes
also may help make living with Parkinson's disease
easier.
Eating a healthy
diet
It's important to eat a nutritionally
balanced diet that contains plenty of fruits, vegetables and whole
grains. These foods contain natural antioxidants that help protect
against free radical damage. They're also high in fiber, which is
important for helping prevent constipation.
If you take a fiber supplement, such as
psyllium powder, Metamucil or Citrucel, be sure to introduce it
gradually and drink 8 to 10 glasses of fluid daily. Otherwise, your
constipation actually may become worse. If you find that fiber helps
your symptoms, use it on a regular basis for the best results.
In addition, avoid drinking caffeine and
alcohol and try to reduce your consumption of fats ! especially
saturated fats. Foods that contain saturated fat include red meat,
milk, cheese, ice cream, and coconut and palm oils. Try to restrict
your total fat intake to less than 30 percent of your daily
calories, with no more than 10 percent coming from saturated
sources.
Although studies have not found that
specific vitamins, including antioxidants such as vitamin E, help
slow the progression of Parkinson's disease, some doctors may
recommend vitamin or antioxidant supplements. If you're interested
in supplementing your diet, talk to your doctor or
pharmacist.
Eating and swallowing
carefully
You may have difficulty swallowing in the
later stages of Parkinson's disease. To help make eating and
swallowing easier:
- Take small bites of food and chew each mouthful thoroughly.
- Swallow each mouthful before putting more food into your
mouth.
- Try chopping food in a food processor or blender to make it
easier to eat.
- Take your time eating. Use a warming tray under your plate so
your food doesn't get cold before you're done.
Exercising
Regular exercise is extremely important
for people with Parkinson's disease. It helps improve mobility,
balance, range of motion and even emotional well-being. Your doctor
or physical therapist may recommend a formal exercise program, but
any physical activity, including walking, swimming or gardening, is
beneficial. In fact, some studies have shown that weight-bearing
exercises, such as walking, jogging and dancing, may be more helpful
than physical therapy for people with Parkinson's disease.
Keep in mind that your energy level may go
up and down, and you'll sometimes need to pace yourself. If you're
tired, try doing one part of your routine at one time of day, and
adding another segment later. Also, choose a time to exercise when
your medicines are working well and you feel strong.
Be sure to stretch before and after you
exercise. Stretching warms up your muscles, helps prevent stiffness
and improves your flexibility and balance.
Walking with care
Parkinson's disease can disturb your sense
of balance, making it hard to walk with a normal gait. These
suggestions may help:
- If you notice yourself shuffling, slow down and check your
posture. It's best to stand up straight with your head over your
hips and your feet 8 to 10 inches apart.
- Buy a good pair of walking shoes. Avoid running shoes.
- Practice taking long steps and exaggerate lifting your legs
and swinging your arms.
- If you become stuck in place ! known as freezing ! rock gently
from side to side or pretend you're stepping over an object on the
floor.
Avoiding falls
In the later stages of the disease, you
may fall more easily. That's because Parkinson's disease affects the
balance and coordination centers in the brain. In fact, you may be
thrown off balance by just a small push or bump. The following
suggestions may help:
- Ask your doctor or physical therapist about exercises that
improve balance, especially tai chi. Originally developed in China
more than 1,000 years ago, tai chi uses slow, graceful movements
to relax and strengthen muscles and joints. To find a tai chi
class in your area, contact your local senior center, YMCA or
health club.
- Wear rubber-soled shoes. They're less likely to slip than
shoes with leather soles.
- Remove all area rugs from your home and make sure carpeting is
secured firmly to the floor.
- Install handrails, especially along stairways.
- Keep electrical and telephone cords out of the way.
- Install grab bars around your tub and beside the toilet.
- Make sure you can reach the telephone from your bed and carry
a cordless phone with you during the day.
Dressing
Dressing can be the most frustrating of
all activities for someone with Parkinson's disease. The loss of
fine motor control makes it hard to button and zip clothes, and even
to step into a pair of pants. These suggestions may help:
- Allow plenty of time so you don't feel rushed.
- Lay clothes nearby.
- Choose clothes that you can slip on easily, such as
sweatpants, simple dresses or pants with eleastic waistbands.
- Look for clothes and shoes with Velcro fasteners, or replace
buttons on clothes you have with Velcro.
Speaking
Even in the early stages of Parkinson's
disease your voice may become very soft or hoarse. To communicate
more easily:
- Face the person you're talking to, and deliberately speak
louder than you think is necessary.
- Practice reading or reciting out loud, focusing on your
breathing and on having a strong voice.
- Speak for yourself ! don't let others talk for you.
- Consult a speech-language pathologist who is trained to treat
people with Parkinson's disease.
Coping
Strategies
Living with any chronic illness can be
difficult, and it's normal to feel angry, depressed or discouraged
at times. Parkinson's disease presents special problems because it
can cause chemical changes in your brain that make you feel anxious
or depressed. Medications used to treat the disease also can cause
depression and other mental changes. Furthermore, Parkinson's
disease can be profoundly frustrating, especially in the advanced
stages when ordinary tasks take longer to accomplish and walking,
talking and even eating become more difficult.
Some of the following suggestions may help
you deal with the stress of living with Parkinson's
disease:
- Learn all you can about your illness. Find out how the
disease progresses, your prognosis and your treatment options and
their side effects. The more you know, the more active you can be
in your own care. In addition to talking to your health care team,
look for books and information on the Internet, including the Web
sites of various Parkinson's disease organizations.
- Be proactive. Although you may often feel anxious or
discouraged, don't let others ! including your family and your
doctors ! make important decisions for you. It's vital that you
take an active role in your treatment.
- Maintain a strong support system. More and more studies
show that strong relationships are crucial in dealing with chronic
illnesses. Although friends and family can be your best allies,
the understanding of people who know what you're going through can
be especially helpful. Support groups aren't for everyone, but for
many, they can be a good resource for practical information about
Parkinson's disease. You may also find that you develop lasting
bonds with people who are going through the same experiences as
you. Support groups also exist for the families of people with
Parkinson's disease. To learn about support groups in your
community, talk to your doctor, a Parkinson's disease social
worker or a local public health nurse.
- Minimize work-related stress. A diagnosis of
Parkinson's disease doesn't mean you have to stop working. In
fact, 25 percent to 35 percent of people with the disease continue
to hold either full- or part-time jobs. But you may need to
approach work differently. Start by breaking your job down into
individual tasks. Then consider whether your symptoms will affect
your ability to perform each task.
Next, try to create a schedule that
allows you to do the most challenging assignments when you're at
your peak. In some cases, you may consider telecommuting, working
part-time or even changing jobs. Keep in mind that the Americans
With Disabilities Act (ADA) requires your employer to make
reasonable accommodations to help you function more easily on the
job. These accommodations include modified work schedules,
reassignment to vacant positions, job restructuring and the use of
special equipment or devices. For more information about the ADA,
call the toll-free ADA information line at 800-514-0301.
Although you may not feel comfortable
talking about your illness, in many cases it's best to be candid
with your supervisor. That way, he or she can work with you to
make the adjustments necessary to meet your needs. On the other
hand, you're under no legal obligation to disclose your condition
to your employer as long as you can do your job.
- Maintain good communication with your partner. It's
extremely important for couples to be open about their feelings,
especially when it comes to living with Parkinson's disease. The
disease may change your life and the lives of your loved ones in a
number of ways. It's best if you can talk honestly about these
changes. For instance, if you're no longer able to work full time,
there may be financial issues that need to be resolved. The amount
of care a person with Parkinson's disease needs is also often an
issue. Because it may take you longer to do ordinary tasks, your
partner might want to help. But most people with Parkinson's
disease like to remain as independent as possible. You'll need to
let your partner know when you need help and when you don't.
Sometimes couples also experience sexual
problems. Parkinson's disease makes it more difficult to move
easily, which can affect intimacy. In addition, some men with
Parkinson's disease may have problems with impotence
and women may experience decreased desire (libido). This may be
the result of antiparkinson medications or of the disease itself.
But these problems can often be helped. For instance, medications
such as sildenafil (Viagra) have proved beneficial for many men
with Parkinson's disease.
In addition, try to schedule time
together when your medications are at their peak and you're less
likely to be troubled by symptoms. And keep in mind that
intercourse is only one way to be intimate. Just cuddling or
holding each other often can deepen a relationship and make it
more emotionally satisfying.
Most important, try to talk frankly
about your feelings and concerns. Repressed feelings can be
harmful to your immediate well-being and long-term health. If
necessary, discuss your problems with your doctor or
counselor.
- Be honest with children. If you have younger children,
don't try to hide the diagnosis from them. Children can usually
sense when something is wrong in the family, and the anxiety and
fear of not knowing is often harder on them than knowing the
truth. In addition, children need to be reassured that their
mother or father will be all right and will still be there for
them. Answering your children's questions honestly can help them
cope.
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