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Rich, your personal testimony speaks more eloquently than reams of scientific documents. Thanks. Rayna Gillman cg/Marty/69/69/68 [log in to unmask] -----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. >