- Sex: M
- Data Quality: 2 stars
- Parkinson's: 19 yrs
- Hoehn-Yahr 2 Type: Parkinson's disease On
- Mouth/throat: mild
- Arms: mild
- Chest: none
- Legs: mild
- Male, 45 years
- Mount Laurel, NJ
- Primary Condition
- Parkinson's disease
- First symptom
Father of two young boys. I am an attorney who has not been in practice for several years due to my disability.
This testimony was given by Richard Pikunis, Jr., a 30 year old lawyer with Parkinson’s Disease. He presented this on Jan 12, 1999 before the Senate Appropriation Subcommittee on Labor, Health and Human Services. Unlike the scientific/legal arguments that were made, his testimony was of a personal nature, discussing his life so far with PD.
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-tale 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.
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