12/05/2001 - Updated 04:38 PM ET
USA Today
Debra Jo Rupp shares hope for Parkinson's disease
By W. Reed Moran, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

Debra Jo Rupp says people with Parkinson's need
lots of help from their friends and loved ones.

As the mother in the Fox hit That 70's Show, actress
Debra Jo Rupp knows how to draw humor from her
often-difficult family. But finding the laughter in crisis
is also what Rupp does in real life. That's because her
mother is battling Parkinson's disease (PD).

"Several years ago, my mother started suffering from
symptoms of what turned out to be Parkinson's disease,"
says Rupp. "Part of what was so frustrating and frightening
was that her condition was so hard to diagnose.

Rupp says that mother, Margaret, who is now 72, began
falling repeatedly, had minor traffic accidents, and eventually
began struggling for words. "When we brought her to a doctor,
we initially thought she had experienced a stroke," says Rupp.

But after being referred to a specialist through Rupp's friend
and fellow actress Lisa Kudrow, the proper diagnosis was
finally determined.

Rupp's mother was diagnosed with cortical basal ganglionic
degeneration, a rare disorder characterized by Parkinson's
disease and cortical degeneration.

Because the symptoms were already severe and progressed
rapidly, Rupp's mother is now in a nursing home.

"At this point, my mother can't talk, walk, or use her hands ...
but the miracle is that she is cogent and can still laugh,"
says Rupp.

And it is the balm of laughter that has buoyed the spirits
of the family members as well. "People ask, how do we all get
through this experience day by day?," says Rupp.
"The answer is we all understand the basic absurdity of the
situation, and laughter's a way of communication that can go
deeper than words."

Rupp says that adversity has also brought her family closer.

"We simply found we had to readjust our expectations,
but we were all in this together," says Rupp.

And while Rupp has accepted the reality of her mother's
late-stage symptoms, she is an ardent advocate of hope
for others. "Parkinson's is a condition that's seen enormous
advances in treatment. Early diagnosis allows patients and
their families to enjoy a greatly enhanced quality of life."

Getting the facts
Parkinson's is a chronic, slowly progressive neurological
condition that affects a small area of cells in the middle brain
known as the substantia nigra. Gradual degeneration of these
cells causes a reduction in the vital chemical dopamine.
This decrease in dopamine can produce one or more of the
classic signs of PD:

Resting tremor on one side of the body

Generalized slowness of movement (bradykinesia)

Stiffness of limbs (rigidity), and Gait or balance problems

According to the National Parkinson Foundation (NPF),
up to 1.5 million Americans are affected by PD, more than
those suffering from multiple sclerosis and muscular dystrophy
combined. PD affects approximately one out of every 100
persons over 60 in the USA.

The cause of PD remains a mystery. It is not contagious,
and at present there is no conclusive research that identifies
an actual gene linked to Idiopathic Parkinson's Disease —
the most common form of PD.

Since there is no definitive lab test or brain scan to verify
the clinical diagnosis of PD, the NPF strongly recommends
that patients seek a verification of this condition from a
board-certified neurologist who specializes in movement
disorders.

While there is as yet no known cure or prevention for PD,
progressive treatments allow many patients to maintain a
high level of function throughout their lifetimes. But the NPF
emphasizes it would be a mistake for newly diagnosed patients
to drift from doctor to doctor looking for a "magic bullet"
or miracle drug to completely eliminate all symptoms of PD.

Living well with PD
Many early PD symptoms can be controlled with currently
available medications such as Sinemet. The best results are
obtained in the first few years. However, with long-term use
some patients notice a shorter duration of action from each
dose. Other drugs, called dopamine agonists, are often used
in conjunction with Sinemet to prolong its duration and action.

Surgical procedures such as thalamotomy for tremor, and
pallidotomy for overall disability, have also been shown to
enhance the quality of life for many PD patients.
Most physicians agree that brain surgery is a reasonable
option only for patients who are no longer responsive to
optimal medication management.

One of the latest advances in neurosurgery is deep brain
stimulation (DBS), wherein an electrode is planted deep within
the brain and controlled by the patient with an on/off magnetic
device.

Dr. Michael Dogali, professor of neurosurgery at the University
of Southern California, is a pioneer in the development of a new
procedure called simultaneous bilateral deep brain stimulation.

"The advantage of bilateral DBS is that we are able to address
many Parkinson's symptoms on both sides of the body with
one surgery," says Dogali.

Thanks to an exemption from the FDA, Dogali and his colleagues
working at Good Samaritan Hospital in Los Angeles are one of
few surgical teams in the nation currently able to provide
bilateral DBS.

"No other therapy has shown to dramatically suppress
symptoms of advanced Parkinson's," says Dogali.
Recent results indicate that bilateral DBS can reduce rigidity,
slowness or absence of movement by as much as 60% and
reduce tremors by more than 90%."

Dogali reports that unlike other surgical procedures such
as pallidotomy, DBS does not destroy brain tissue, and the
electrical stimulation can be adjusted to a patient's changing
needs.

"There is also clinical evidence that early intervention with DBS
can be neuroprotective," says Dogali. "It has been shown to
actually shield brain tissue and prevent the disease from
progressing."

Dogali emphasizes that while a cure for PD is at least 10 years
away, bilateral DBS can make a huge difference in the lives of
people currently dealing with the advanced stages of the illness.

Meanwhile PD patients and their families cope the best
they can, one day at a time. "It is what it is," says Rupp.
"For now, we can't stop it, but we can always seek the best
medical advice and give much-needed emotional support to
our loved ones."

And as Rupp reminds us, when times are toughest, don't
forget to laugh.

SOURCE: USA TODAY
http://www.usatoday.com/news/health/spotlight/2001-12-05-rupp-life.htm

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