Living With Parkinson's Disease
Last Updated: April 2, 2013
Karl Robb's first medical "diagnosis" was "to have a beer and
relax." Seven doctors and several years later, Karl received the
correct diagnosis: Parkinson's disease. He received
medication (Sinemet®, what Karl calls the "gold standard" of
Parkinson's drugs) and twenty-four hours later, his foot stopped
trembling for the first time in almost a decade.
Parkinson's disease (also known as Parkinson disease) is a
neurological disorder that occurs when certain neurons in the brain
die or become impaired. These nerve cells, located in a midbrain
structure that controls muscle movement, produce dopamine, the
chemical responsible for coordinated muscle function. Symptoms of
Parkinson's disease begin to appear when 80 percent of these
neurons become damaged.
"Parkinson's affects every person differently," Angela Robb,
Karl's wife, says. "For Karl, receiving the correct diagnosis
became the first step to living with Parkinson's disease."
Karl first viewed his Parkinson's diagnosis with relief: "I
thought that I had a brain tumor. So when I found out it was
Parkinson's and that I wasn't going to die in a few months, I knew
I had the time to learn about what I was up against and devise a
More often, newly diagnosed patients enter a period of denial,
unwilling to accept that their bodies have entered a limited
physical state and that they will never regain their physical ease
again. They often ask if they can focus upon one symptom and work
to eliminate it. Unfortunately, this is not how Parkinson's disease
works. At present, there is no known cure to slow or stop the
progression of the disease.
However, this does not keep Karl from following a strict
lifestyle regimen that he believes (and science is beginning to
prove) immensely improves living with Parkinson's disease.
"I think you should do whatever you can for yourself that is not
invasive and, of course, know your medication," he says. "Pace
yourself and know your limits, [and] pay attention to your body. I
receive weekly massage [and] practice yoga and Reiki. I have also
been a vegetarian for twenty years."
For Karl, knowledge is power, but a positive attitude endows
super powers: "I was so relieved to stand up straight, have full
balance, and not feel pain. But then my doctor suggested ramping up
my medication. Fortunately, I went on the Internet and learned that
such an increase could prove detrimental to my rehabilitation. So I
switched doctors. Again.
"Youhaveto take charge of your own well being. Especially when
your medicine's effectiveness changes all the time and your
condition can be quite different on Tuesday than it was even on
Monday. So on the days that I'm not doing what I should be doing,
at least I'm aware that I'm not doing it."
Karl considers the way he met Angela the best example of the
benefits of a positive outlook-he believes he would never have met
her if not for the disease. They met online, a method he never
would have considered before getting Parkinson's.
Angela calls herself a "Support Partner" and she and Karl are
active members of the Parkinson Action Network. They also work
closely with the National Parkinson Foundation and regularly visit
The Parkinson Institute in Sunnyvale, California. And they
facilitate a local support group in their community, and Angela
runs a local care partners group as well.
"But, let me be very clear," Angela asserts, laughing, "I
married Karl, not his disease."
The distinction, though obvious, is important. Living with
Parkinson's disease can quickly consume the spirit of the patient
and his or her family. This strain, a result of frequent physical
pain, inconsistent moods, and more practical adjustments like job
changes and lifestyle adjustments, can challenge the healthiest of
"If Karl wasn't a positive thinker we wouldn't be able to carry
it forward. And there are certainly days when his attitude works
for both of us. He's also determined to do most of his own work
with his condition. There may be small matters where I help like
buttoning his shirtsleeves or carrying a pitcher of water. And I
always drive, which was an adjustment."
Angela describes living with the disease as an exercise in
"It is good to have a Plan A with a backup plan and backup plan
for the backup plan all the way to Plan Z," she says. "Let's say we
plan to go shopping at the mall to buy a gift, then Karl wakes up
and is unable to walk well. We go shopping online instead. It makes
stricter scheduling like air
travel very interesting. You have to leave way in advance of
your flight in case of long lines or long walks through the
Angela suggests a range of options when asked what one should do
if diagnosed (or if a loved one is diagnosed) with Parkinson's:
"First, look into joining a support group to speak with others who
have walked in your shoes. Talking to people who have experienced
what you are about to go through provides a level of comfort that
you are not alone, that there are people to reach out to.
"Doing research online and looking into some of the national
organizations as well as reading some of the authors who have
written about this topic also helps. Also, going to conferences and
joining the community gives you a chance to meet others with the
disease and to learn more."
But she is quick to return to a recurring theme about this
neurological disease. "Everybody has a different disease path and
to realize that your path is different is quite important."
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