I am also 30 years old PD patient & have been working with Senator Larry
Craig concerning these same issues.  It is nice to see the effort put into
this problem with funding.  Thank You.

"shakee" Dave Cox

Richard L. Pikunis, Jr., J.D. wrote:

> 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.