Rich, your personal testimony speaks more eloquently than reams of
scientific documents.  Thanks.

Rayna Gillman
cg/Marty/69/69/68
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-----Original Message-----
From: Richard L. Pikunis, Jr., J.D. <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Wednesday, January 13, 1999 11:53 PM
Subject: Pikunis Testimony: Senate Appropriations Committee


>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.
>