Receiving a diagnosis of Parkinsonís disease (PD) can
be devastating for families. Even more devastating is
not understanding the disease, how to live with it, how
it can be treated, or anything else about this
debilitating disease. Families can be desperate for
information on PD and what to expect in the coming
weeks, months, and years.
PD is a movement disorder affecting more than one
million people in the United States. According to
Science News, more than 50,000 people are diagnosed with
PD each year. There is no cure, yet there is treatment
available and options vary greatly depending on how soon
the diagnosis made.
Causes of Parkinsonís:
In order to understand what the disease is, it is
helpful to understand what causes the disease. There is
some evidence to suggest that the disease has a genetic
component, although not all individuals who have the
disease also have a family member with the disease.
Environment also plays a role, although scientists have
not determined to what extent environment interacts with
genetics to cause (or not cause) Parkinsonís.
Some environmental theories include exposure to
pesticides or some other environmental toxin. One
interesting piece of research sponsored by the
Parkinsonís Foundation suggests that there are several
factors along the environmental track that may
contribute to PD. These factors include ďrural living,
well water, and herbicide use and exposure to
In order for Parkinsonís to develop, a part of the
brain, the substantia negra, begins to malfunction and
eventually dies. This part of the brain is responsible
for producing dopamine, a neurotransmitter that acts as
a message relay for coordinated movement in the body. As
the substantia negra dies, dopamine production
diminishes greatly, causing further and further
disruption to the movement centers within the brain.
Finally, the person is unable to voluntarily control
movement of the body.
Symptoms of Parkinsonís:
Before going to the physician for answers, many
people start experiencing symptoms of PD that cause some
concerns. These usually start in individuals older than
60 years of age, although people who are much younger
have been diagnosed with PD. For example, Michael J. Fox
is one of the most famous individuals with PD with news
of his diagnosis announced in 1998. Up until his
diagnosis at age 30 (in 1991, although his diagnosis was
not made public for seven years), the disease was
relatively unknown and received little funding or
research directed toward its symptoms, diagnosis,
causes, and treatment options.
Some of the symptoms that you can expect include:
Bradykinesia Ė slow walking or other movement related
activities (walking, standing, or sitting down).
Bradykinesia can also be seen in stiff facial muscles,
often resulting in a
ďmask-likeĒ appearance where facial expressions seldom
- Trembling in the hands, fingers, forearms, feet,
mouth, or chin
- Rigid or stiff muscles, including muscles that
suddenly freeze for no reason
- Muscle pain, usually accompanied by the rigid or
- Unsteady gait and balance.
Parkinsonís is usually characterized by a shuffling
walk. The person usually looks down at the ground, not
swinging their arms, keeping their shoulders drooped.
The person can lean unnaturally forward or backward as
they move. Some people have trouble starting to walk and
often find their stride frozen as they try to move.
While the movement issues are paramount in helping
physicians start the diagnosis process, there could be
smaller (although no less significant), secondary
symptoms that accompany the disease. A person may or may
not exhibit these symptoms, and the disease varies
widely from person to person depending on a variety of
Secondary symptoms include:
- Difficulty swallowing or chewing
- Small, cramped handwriting
- Constipation or loss of control of bowels and/or
- Depression, fear, and/or anxiety
- Decreased cognitive functioning, including slower
processing of information and thinking abilities
- Fatigue and muscle pain
- Dry skin on the face and scalp
- Changes in speech, including talking in a low, soft
- Sleep disturbances
Making the Diagnosis:
While there is no definitive diagnosis for PD,
doctors often run a battery of tests in order to rule
out other causes of the patientís problem. In other
words, PD is a diagnosis of exclusion, with physicians
making the final determination of PD after other avenues
have been exhausted.
Some of the tests you might expect are blood tests,
urine tests, CT and MRI scans, as well as neurological
tests. A thorough neurological exam is needed in order
to rule out other areas that could be causing the
Seeking out Treatment Options:
Depending on how soon the disease is diagnosed, your
physician may have several options. Since there is no
cure, treatment is provided in order to manage symptoms.
Doctors will often prescribe a medication to help
replace the dopamine that the disease attacks, although
this is not the only method of treatment you should
Patients can help themselves at home through
consistently exercising affected muscles, keeping them
as flexible as possible. As the disease progresses, the
exercise methods may change in order to provide a new
level of comfort for the patient. In addition, there are
diet considerations that can help; for some people,
losing weight will help ease muscle pain and symptoms.
There are also surgical options for a limited set of
patients who need more aggressive treatment. Your
physician can discuss these options with you and
determine if your case is a candidate for this type of
Recent studies have revealed that supplements, such
as vitamin E and others like it, have no real role in
treating PD. Families who may have once been instructed
to try supplements in order to strengthen someoneís
overall health, muscle tone, and other areas are finding
that these assumptions have not born scientific fruit.
In other words, save your money when it comes to
supplements. There are other more effective treatment
methods available to you and your loved ones.
Research concerning treatment and possible cures is
ongoing. More patients are needed for clinical trials in
order to develop additional lines of research and decide
whether or not existing theories need more study. The
Parkinsonís community has been under-represented in
clinical trials, resulting in less advances in treatment
options and causality of the disease. To find out more
about clinical trials, visit www.pdtrials.org.
Living with Parkinsonís:
It is possible to lead a fulfilling life despite PD.
The disease may change the way a patient views their
activity level, yet it is possible through treatment to
continue many of the same hobbies and even work on
career choices. Your familyís doctor is the best place
to start when asking questions about the level of
activity that you can expect with each stage of the
disease. Exercise, for example, is one area that should
be discussed clearly with your physician. Finding out
the areas where you may need more assistance is critical
so you can plan and be prepared for them.
In addition, caregivers need to be prepared with
questions for physicians to find out some of the aspects
of the disease that can affect them. Traveling with
someone who has PD can be challenging, for example, but
that doesnít mean that you need to shelve ideas of the
familyís vacation. Making minor modifications may be all
that is necessary. Including a physical therapist in the
planning process may also be extremely beneficial since
there are mobility concerns that need to be addressed as
Families need to be aware of the latest research,
treatment options, and additional symptoms that could be
experienced as the disease progresses. The disease may
advance slowly, especially if caught early and treatment
begins quickly; however, it may take its toll on someone
quicker if he or she is in poor health and chooses not
to take steps toward living a healthier lifestyle.
Parkinsonís may not be curable, but it is manageable
with help from a good family support system, solid
medical advice, and advance planning.
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