| Choices:
Perspectives of a Patient With Parkinson’s Disease
By
HARVEY K. FRIEDLAND, J.D., B.E.E.
 It
started with a twitch in one of my fingers. It pulsated then quickly
abated. For reasons then beyond my comprehension, it started again.
This is what I told my physician half a decade ago. She immediately
told me “You have Parkinson’s disease. I’ll make an appointment
with our neurologist, a young physician who went to Harvard Medical
School. He’ll examine you, perform exclusionary tests, make an
official determination and put you on a schedule for medication.
Okay?”
It’s now four years later. I’ve been on the usual Parkinson’s
medications–Elderpryl and L-dopa. I recently entered the advanced
stage of Parkinson’s, which means that those hours of the day
when I become rigid and lethargic are arriving at increasing intervals.
During the cherished “on” times, when the medication is working
the way it’s intended, PD sufferers such as myself feel normal
and energetic, but these hours dwindle to mere moments and become
more elusive and fleeting as the disease progresses and the body
deteriorates. New symptoms have started occurring; I’ve now found
myself plagued with shuffling, dizziness and intermittent loss
of equilibrium.
When I was first diagnosed with PD, I read a tremendous amount
about the disease. As I familiarized myself with PD by following
cutting-edge research, attending lectures (such as those given
by Dr. Jeff Bronstein, Director of Motion Disorders at UCLA) and
going to support groups, I found that: there are really only a
few options available to the Parkinson’s sufferer. A patient can
opt to take medication and let the disease take its ineluctable
toll on his body, or he can elect to have DBS – Deep Brain Stimulation
– a serious surgical procedure that has shown promising results
but is still a far cry from a cure. DBS only lessens certain symptoms
(such as tremor) and still requires some patients to maintain
their regimen of drugs. Also, DBS sometimes requires patients
to undergo the procedure more than once.
There is a third choice – a third hope – on the horizon. “Spheramine”,
a procedure not yet authorized by the FDA (but on the fast-track
for approval and granted funds by the National Institute of Health),
utilizes cell-coated micro-carriers (CCM) to inject human retinal
pigmented epithelial cells into a person’s brain so that a patient
can begin regenerating the dopamine-producing cells that have
been dying since he began suffering from Parkinson’s. If and when
approved by the FDA, spheramine offers the best hope to patients
such as myself, since it is a site-specific, minimally invasive
procedure and has the potential of emancipating the PD sufferer
from both his symptoms and his dependence on side-effect causing
drugs. The true innovative genius of spheramine, which was pioneered
by the brilliant neurologist Dr. Ray Watts of Emory Medical School,
is that the replacement cells injected into a patient don’t eventually
wither and die. They maintain their potency for an extremely long
time. What’s more, as many as 10,000 patients could be treated
by a single batch of retinal cells!
My personal neurologist, the aptly-named Dr. Donna Masterman of
UCLA, firmly believes I am making the right choice in pursuing
spheramine therapy versus DBS or another form of treatment. Dr.
Masterman is expertly familiar with the tribulations of Parkinson’s
and feels that replacement cell technology is right for my body
and stage of the disease. Replacement cell technology bears such
unique promise that Michael J. Fox’s foundation has donated over
four million dollars to its furtherance.
During my intensive research in the last
few years, I learned that spheramine is the first product of a
company called Titan Pharmaceuticals. Though spheramine has yet
to complete the necessary clinical trials to attain FDA approval,
it has completed phases I and II of safety and efficacy and all
six patients in
the clinical trial of spheramine have demonstrated marked improvement.
In an April 18, 2002 news release, Alison Roselli, Titan’s director
of corporate communications, reported on the six individuals in
the pilot study, “Patients experienced an average of 48 percent
improvement in motor “Universal Parkinson’s Disease Research Score”
(UPDRS) over all other Parkinson’s medications. [They also experienced]
an average of 43 percent improvement in total UPDRS score. Improvements
were noted in quality of life and activities of daily living.
Half the patients also demonstrated a reduction of dyskinesia
[involuntary movement].”
As one for whom the very act of walking has become an extreme
trial akin to traversing a balance-beam, I read the news release
with great hope and optimism. I discussed Titan’s spheramine with
Dr. Masterman and believe the therapy procedure offers me the
best hope of living a high quality life. I’m bolstered in this
belief by the confidence of the drug company Schering AG, which
is pleased with spheramine’s intial trial results and looks forward
to further testing in the near future.#
Education
Update, Inc., P.O. Box 20005, New York, NY 10001.
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consent of the publisher. © 2002.
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