This is the testimony I gave on Jan 12, 1999 before the Senate
Appropriations Subcommittee on Labor, Health and Human Services....
Unlike the scientific/legal argguments that were made, my testimony
was of a personal nature, discussing my life, so far, with PD at age 30.
Rich Pikunis, Jr.
TESTIMONY OF RICHARD L. PIKUNIS, JR
Parkinson's Disease Patient
Hearing of the Senate Appropriations Subcommittee
Labor, Health and Human Services
January 12, 1999
I wish to thank Senator Specter and the other members of this committee
for allowing me the opportunity to discuss my experiences with
Parkinson's disease with you. I am not a scientist nor do I hold myself
out as an expert in the field of stem cell and fetal tissue research.
What I can share with you today is my perspective, as a young person,
with the terrible debilitating disease known as Parkinson's.
Parkinson's disease is a progressive neurological disorder caused by
the degeneration of brain cells that produce dopamine, a neurochemical
that controls motor function. By the time symptoms of stiffness, tremor
and slowness of movement begin to exhibit themselves, the brain has
already lost about 80 % of its dopamine producing cells. Of course, I
didn't know any of this for a long time; dopamine meant as much to me as
planning for my retirement, and science had no bearing on my life.
However, today I look to science, praying it will be able to save my
life.
When I was 24 years old, my symptoms were apparent, but because of my
age and general overall good health I went undiagnosed. I had the
symptoms associated with a typical Parkinson's patient; slowness and
loss of movement, postural instability- resulting in frequent falls, a
distorted gait and muscle rigidity. I remember not going on a family
vacation because my body ached so bad and I was so stiff and rigid that
walking consumed all my energy.
Because of a common misconception that Parkinson's Disease is a
geriatric disorder the diagnosis wasn't as obvious as it should have
been. Besides, I don't exhibit the most prominent, tell-tail symptom of
Parkinson's- the tremor. In fact, according to the American Parkinson's
Disease Association tremors only occur in about 70% of patients. It is
usually the tremors that brings the patient to the doctor.
However, after years of knowing something was wrong but not quite able
to put my finger on it, my mind was finally put at ease when the doctor
told me I had Parkinson's. Yes, at the ripe old age of 27 years, and
after three medical opinions, it was conclusive--I did have Parkinson's
Disease. I was just starting out in life. The same age as my friends
who were getting married and buying houses. They were enjoying life as
I felt life was slowly being drained from my body. Not knowing what
Parkinson's was is probably why I wasn't as upset as my parents upon
hearing the diagnosis. I remember my mother abruptly leaving the
doctor's office, only to find her moments later in the car sobbing.
Since then, I have learned a lot about Parkinson's and I am here to
tell you that I hate it with a passion. Parkinson's has robbed me of my
youth. Parkinson's has been there for every major event of my adult
life and overshadows everything I do and fights me every chance it gets.
Parkinson's walked down the aisle with me at my wedding, it made my life
hell as I attended law school, as if the stress of law school wasn't bad
enough I had to constantly be reminded by my stiff, aching body that
Parkinson's was still with me. I had always hoped to have a career in
federal law enforcement when I graduated from law school, but know I am
finding it difficult to even enjoy a walk with my family. I can accept
all this, but what scares me most about Parkinson's Disease is that it
holds my future in its hands. My son just celebrated his first birthday
and is learning to walk as I am slowly losing my ability to do so. I
wake up every morning barely able to move until my medication kicks in.
I am currently taking L-dopa to replace the dopamine that my body can
no longer produce, but it is becoming less effective at the current
dosage. I know L-dopa will not be able to adequately treat my symptoms
forever. It really scares me when I think about how my life will be in
a few years if we don't find a better treatment or cure for
Parkinson's. I wonder if I will be able to teach my children how to
ride a bike or dance at their weddings. I am scared about forced
retirement before I am financially stable. I just graduated from law
school, believe me, I can't afford not to work. But I know the choice
may not be mine to make, because with an increase in L-dopa comes
debilitating side effects, such as involuntary body movements and motor
fluctuations. Sometimes the side effects are just as bad as the
disease.
It is imperative that now, right now, we expand the research into
Parkinson's Disease. Preliminary scientific evidence indicates that an
investment in Parkinson's research into areas involving stem cells and
fetal tissue have the potential to produce viable treatments and cures
not only for Parkinson's disease, but for heart failure, diabetes,
stroke, Alzheimer's, and spinal cord injuries to name a few.
Researchers are on the cutting edge of discoveries that will change
immeasurably the lives of millions. Please make it possible for the
scientific community to explore these avenues of research.
Congress has taken steps in the right direction through the enactment
of the Morris K. Udall Parkinson's Research Act, but my government is
still falling short in the eyes of the millions who desperately need
their help. We want the money authorized by the Udall Act to actually
be spent on research. Start investing the millions it will take to cure
us rather than billions to care for us.
Please help me and others like me live our dreams and maintain our
dignity. Only you can help put an end to the human suffering associated
with Parkinson's disease. Don't let me become a burden to my loved ones
and society. Let me live my dream of an optimistic future with my wife
and family.
