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Living with Parkinson’s
Disease
Accepting the news
When patients first receive a Parkinson’s disease (PD)
diagnosis, it may be difficult to believe. Many people find
getting a second opinion a good idea, if only to help them
take the next step in acceptance. There is usually a lot to
consider following a diagnosis, from work options to lifestyle
changes to treatment methods. Eventually, patients will have
to choose whether or not to start taking medication for relief
of their Parkinson’s disease symptoms.
This section of our website offers
basic guidance on what to expect with Parkinson’s.
It is not meant to answer every question. Please refer to
the resources section for links
to websites and organizations that can help further.
Medication
Doctors often prescribe levodopa and
carbidopa. There are also
several other medications for PD that are available.
People are often pleasantly surprised
at the amount of relief they experience. Patients with more
advanced diseases or with
other medical conditions may have milder responses. Patients
should know about side effects, short-term and long-term, of
medications. Doctors can be a helpful source of information,
as can the internet or the Parkinson’s Disease Foundation
— (800) 457-6676.
"Adjusting to medication: ON and
OFF cycles"
Perhaps the biggest adjustment Parkinson’s disease patients
will have to make is learning to live with the "ON-OFF” cycle.
This is the back and forth between periods of time with symptoms
and periods of time without symptoms. It fast becomes the PD
patient’s new rhythm of life.
During ON times, patients report they feel relatively fluid,
clear, and in control of their movements. Often, symptoms of
PD may be invisible to all but professionals.
During OFF periods, patients experience
stiffness, lack of muscular coordination, pain, difficult
handwriting — the full
range of classic PD symptoms. Most patients have visible symptoms.
Typically, patients will cycle between ON and OFF periods three
to four times every day, although everyone’s experience
is unique.
Signals that OFF times are coming
Often, there are warning signs that
OFF time is approaching and it’s time to take medication.
If the signs, which can be subtle, are missed, patients can
be fully symptomatic
for 60 to 90 minutes of OFF time. Increasing dosage to make
up for lost time only results in more severe side effects like
dyskinesias when the drug finally does take effect.
PD patients will find it beneficial to arrange
life around ON and OFF rhythms. In consultation with their
doctors, patients
can learn to adjust their medication so that it becomes effective
when they want it to be.
Day-to-day living
These areas of life may require special
attention for people with Parkinson’s disease.
Diet. A good, balanced diet is recommended.
Eating more fruits and vegetables and drinking plenty of fluids
(at least eight
8-oz. glasses of water a day) will help relieve the constipation
that many patients experience.
Some people with Parkinson’s
disease have a poor appetite and find themselves losing weight.
Making appetizing, easy
to eat foods will be best, as will eating slowly in a pleasant
environment. People with swallowing difficulties will want
to make soft foods.
Some people also find that protein interferes
with the effects of their medication, and may want to limit
the amount of protein
in their diets. To be most effective, medications should
be taken on an empty stomach.
Exercise. It’s the last thing
patients may feel like doing, but exercise is essential to
managing PD. Mobility is
improved by staying active, and regular exercise and physical
therapy helps keep the classic symptoms of PD at bay. It also
helps secondary symptoms such as depression and constipation.
Bending and stretching (“restorative”, “gentle”,
or “senior” yoga
classes are ideal) fights the disease with the most success.
Driving. This is one of the most difficult
issues patients and their families may face. There are few
state guidelines
regarding PD and driving, and doctors are not required to report
PD to motor vehicle bureaus. However, patients with PD may
pose serious risks to themselves and others when they drive.
PD patients have slowed visuospatial processing, and could
find themselves unable to move if affected by an unpredictable “wearing-off” spell
behind the wheel. A general rule is, when there is reason
for concern, it’s
time to turn the wheel over.
Depression, discouragement and sadness. PD
patients may want to remember that these emotions exist everywhere
in everyone,
with or without PD. PD makes them more likely, as people find
themselves feeling shut out from life and connections to others.
In fact, this happens so often that depression and sadness
are considered co-occurring disorders with PD — in other words,
they go hand in hand.
Sometimes, doctors can prescribe anti-depressants or support
sources that offer relief.
Making an effort, being courageous and patient,
and doing something about it are excellent antidotes to feelings
of depression
or hopelessness. Practicing meditation has helped people with
depression for ages. A healthy diet and exercise combat depression
naturally.
Family. While the challenge of PD is to remain as independent
as possible, patients and family members soon learn that change
is sometimes the only constant with PD. One day patients may
be able to dress and feed themselves, another day they may
have difficulty getting out of bed.
Honesty, frequent communication, patience
and humor are the key to getting through PD with family.
Having fewer expectations
for themselves allows patients to be pleasantly surprised and
not angry when things don’t work out as expected. The
changing relationships that happen with PD can cause misunderstandings
and abrasive family conflicts, but these can be blessings in
disguise, real opportunities for healing relationships. With
or without PD, leaning to live with others takes time and effort,
but it is usually worth it.
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