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The following testimony was given by Iowan Don Schneider, at Wednesday's Senate Appropriations LHHS Subcommittee Hearing on Parkinson's Disease. It may not have received much press coverage, if any -- but it should have. Don did receive loud and sustained applause from the PWP in the hearing room, grateful to him for telling his story (and our stories) so eloquently . Linda FROM: http://www.senate.gov/~appropriations/releases/record.cfm?id=182885 -- Testimony of Don Schneider, Parkinson's Patient, Clinton, Iowa TESTIMONY OF DON SCHNEIDER BEFORE THE SENATE APPROPRIATIONS SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN SERVICES, EDUCATION AND RELATED AGENCIES MAY 22, 2002 Thank you, Chairman Harkin, for holding this important hearing today on Parkinson's research. As a fellow Iowan, I am especially honored to be here today to speak to you about Parkinson's disease both the incredible toll it takes on its victims and their families and the great urgency of providing the federal resources necessary to cure this dreadful disease. Fifteen years after my diagnosis, Parkinson's is continuing to slowly but surely chip away at my quality of life. It has forced me to leave a job that I loved, placed a heavy burden on my family and at times each day renders me unable to walk, read a book or even dress myself. For someone raised as an independent farm boy, I cannot express the frustration that accompanies this disability. Let me begin by giving you a little background about myself. I was born in Clinton, Iowa and raised on a farm in Mt. Carroll, Illinois. After graduating from high school, I attended radio school at Brown Institute in Minneapolis, Minnesota. At age 19, I went to work as a night announcer for KROS radio in Clinton. After serving in a number of capacities at the station -- everything from Announcer to Program Director -- I purchased stock in the company and was named General Manager in 1987. Professionally, I was active in the Iowa Broadcasters Association and served as President of the Iowa Radio Network. I was also very active in the local community -- a member of the Kiwanis Club, helping the United Way's Board of Directors for the Clinton Substance Abuse Council and was involved in countless fundraisers for various worthwhile projects in the Clinton area. In addition, I have always enjoyed working with young people. I was inducted into the Junior Achievement Hall of Fame for serving as an Applied Economics Advisor. I have always had a deep love of sports, especially basketball. I tried to share that with youngsters by coaching junior football and basketball. Later, I even took up the stripes as a high school basketball official. It was in 1988, during a basketball game I was refereeing, I held out two fingers to indicate two shots when I noticed shaking in my left hand. My family had begun to notice a blank stare on my face and I began experiencing slowness of movement and pain in my neck. One visit to the clinic and I was diagnosed with Parkinson?s at the age of 35. For five years after my diagnosis, I hid it from all but my family. When people asked, I simply said, "I have a neurological condition". I could relate very well to the feelings expressed by Michael J. Fox when he was first diagnosed with Parkinson's. You don't want to believe this is happening to you and you certainly don't want anyone else to know what is happening to you. What would they think? How would they treat me? It was extremely difficult after being someone that was always in charge to be forced to depend on others to help me. At first, with the help of my medications, I was able to continue living a relatively normal life. As long as the medicine was working, I could do just about anything. But eventually, progression of the disease and side effects of the medications left me no longer able to count on being fully functional at work. My condition became so unpredictable that I was forced to end my broadcasting career in 1999. Today I reside in rural Clinton with my wife, Rita, and three youngest children, Joseph 17, Sam 14 and Anne 10. My two oldest children are now finished with school and living on their own. Katie, 21, is serving our country in the U.S. Army. She is stationed in Ft. Polk, Louisiana where she currently works with a mobile medical unit. Sarah, our oldest, recently graduated from the University of Iowa and is now at University Hospitals and Clinics working as a registered nurse in the Neurology Department , something that certainly takes on added significance given my condition. I am very lucky to have a strong, supportive family that has stood by me from the beginning. That's not to say it has been easy. I can still recall the profound sadness in the eyes of my family members and the uncertainty and sense of dread we all felt when word came of my diagnosis. I cannot deny that each day I worry about what our future will be like. On the one hand, great progress has been made and many new medications have become available in just the short time I have been affected. On the other hand, there is still no known cause and the possibility of being trapped with an alert, active mind in a body I cannot control is more frightening than I can describe. Since giving up my job, we have had to rely on my wife's income from her job at an accounting firm and Social Security to get by. Fortunately, she makes a good living, but there is no question that Parkinson's has taken an economic toll on our family. We are facing the prospect of soon losing our health insurance with prescription coverage. With a cost of over $700 a month for my prescription medication, we will certainly have to make do with a lot less. I often think about all that my family is missing because of Parkinson's Disease. I have tried to channel some of my anger over being diagnosed with Parkinson's into something positive. I started a Parkinson's support group in Clinton several years ago, which I still facilitate. This group of over thirty families has been a great help to me in facing the daily struggle of life with Parkinson's. No one knows why or how I got this terrible disease. Is it genetic? Two of my great uncles had Parkinson's but one was on my maternal side and the other was on my paternal side. Does the environment play a role? I grew up drinking farm water, but so did the rest of my family and no one else has Parkinson's. The bottom line is we just don't know what causes Parkinson's. But, I am hopeful that we will have answers soon. Scientists have made remarkable progress and with adequate funding could find new treatments and even a cure in my lifetime. I am not a quitter and I refuse to give up hope. I have always had a love of old cars, and have used as a motto a line from an old car movie "The Gumball Rally". In that movie as the race is about to start, a driver in a Ferrari turns to his co-pilot, tears off the rear view mirror, and says, "now the first rule of Italian driving -- what's behind me does not matter". I try to do the same. Keep looking ahead rather than worry about what I've lost and remember all I have to be thankful for , most importantly my wonderful family. I hope that by staying involved and active in the fight for a Parkinson's cure, I can make a difference in my destiny and that of the million other Americans suffering from this dreadful disease. Again, I thank you for the opportunity to be here today. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn