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I know that you have heard all about Parkinson's Disease from Michael J. Fox, Muhamud Ali, Janet Reno and Joel Haveman. These are all prominent people that suffer from this insiduious, stinkin', robber disease and we are quite grateful to them for bringing the spotlight of awareness to our condition. Would you please take the time to listen to someone who isn't prominant...someone who is just a wife and mother and 51 years old and lives in Chillicothe, IL? That someone is me-i'm married to a great guy and the mother of two quite active teens. They don't remember their mom as anything else but a "parkie. Their lives have always been circumvented by my own; out of necessity. I have been diagnosed for almost 13 years now and if you have a moment, I will tell you a story. In 1987, after the birth of my darling baby girl, I was thrilled to be able to nurse her. She would fall asleep in my arms, nursing; we would fall asleep in chairs, in bed, and she nursed! I remember jokingly telling my La Leche League friends that my "tingly" left arm was caused by excessive nursing. Some days, my arm wouldn't move, but life was "wonder-full" - watching my baby grow and flourish - and then the news that I was pregnant again! I knew that I was truly blessed! Life was proceeding according to my time-table. I was too busy to pay any attention to the whispers of my body - I could only hear what it was shouting at me as I carried my ten-pound-three-ounce "kick-boxing" son to term! He was born on Valentine's Day, 1990. Now, we began to hear another kind of whisper - murmurings at first, and then stories of a madman in Iraq. My husband, Stan, was in the Navy Reserves - a Seabee - and my brother, Jeff, was in the Army Reserves Transportation Unit. But surely this crazy man would not cross the line that the USA had drawn in the sand?! In September 1990 (just after Ali turned 3) my brother was activated and sent to Saudi Arabia. Stan was activated in November and sent to Okinawa, Japan. He would go on to Saudi as soon as the ground war began. Meanwhile I was left at home with two babies, trying to make ends meet on a military paycheck. I had no choice but to return part-time to the work that I loved - bartending at the Country Club. Now I really had no time to listen to the ever-more-demanding whispers from my body. But I knew that something was wrong; that I was having serious problems counting back change, carrying drinks, and lifting and hauling heavy bar supplies. Someone said that it was probably just a pinched nerve. I promised myself that when things got back to normal ... In February 1991, we celebrated Mitch's first birthday - complete with a cake decorated with yellow ribbons. My girlfriend made a video tape to send to Dad and later remarked about how strange I looked with my left arm immobile and hanging limp at my side. One day soon after, I was horrified to notice that I was limping - my left leg wouldn't work! I went straight to my doctor, who immediately ordered an MRI of my head. The results came back normal so I continued to fool myself - to hush those noisy old whispers. I had too much else going on in my life... In April 1991 Stan came home; his mother was dying of cancer. The doctors gave her two months - she lasted 3 weeks. My brother came home right after the funeral. At last, spring was a reality: my family was together again, none the worse for wear! And then that Sunday, we were having a family stroll through the mall and Stan stopped me, looked me in the eyes and asked when I was going to deal with my health problems. Believe me, I was back at the doctor's office the next day! He recommended a neurologist whom I was able to see later that week. Dr. Lee immediately put me in the hospital to run tests. As he ruled out disease after disease, I began to wonder just what the hell was going on inside of me. He concluded that I had all the symptoms of PD, but said that I was "too young". He started me on the main PD medication, Sinemet (generic levodopa/carbidopa). I realize now that he was reluctant to diagnose me to a life sentence, so I had to be content with "letting the symptoms more fully manifest themselves". We decieded that we needed a name for this enemy; for this dirty fighter so we went to Mayo Clinic in Rochester, MN and heard what I had expected to hear: "You have Parkinson's Disease." Maybe it was a good thing that I was so stupid about pd. Maybe it was a classic case of "ignorance is bliss." Because if I had a good idea of what was in store for me...things might have turned out very differently. For the first three or four years after my diagnosis, I was in what is called "the honeymoon" span of my disease. My symptoms were very much controlled by my medicine and I remember thinking that if this was the worst PD had to throw me-it was gonna be a cakewalk. WRONG! I mentioned before that this disease is a robber disease. I say that because as I look back, I can see the little inroads that it made on my life, my personality, my family and my very being. There is not one spot that you could point to where a big chunck of myself fell by the wayside, but there it all is-spread out behind me-the crumbeling pieces of my life. In 1995, I became aware of just how powerful an opponent I was facing. It had the abiltiy to change my life virtually overnight. One day, I woke up and my meds quit working-they just stopped-no warning, no by your leave-nada. I coud not get out of my bed. I could not walk, or eat or go to mother's club; I felt weak and very betrayed. By the time that I called my neuro-thinking that I was loosing my mind, he told me that this was the first of my medicine adjustments-something that we would have to feel our way through because each person responds to treatments and drugs in different ways. This was called the snowflake disease for a reason! For the rest of the year, I was tried on every drug that came down the highway. One made me throw up, one didn't do anything at all, another kept me awake all night, another made me fall asleep. For days on end, I couldn't get off of the couch and I began to think of the unthinkable. The news on the TV told about a marvelous new procedure being done called a pallidotomy. In this operation, a metal halo was screwed to your skull and you needed to be awake for the 8-10 hour surgery while a doctor poked and prodded around inside your brain. It seemed like Star Wars to me. Like a oyster that gets a piece of dirt in it's shell, the idea slowly turned in my head, taking form and becoming smooth like a pearl. After about 6 months of polishing and finishing, it became clear that it was by far more acceptable to me to face the pallidotomy than to continue life as it had become. I found a man who was my age and had the operation. He and I became friends and with my husband, we decieded to go for it. My friend called the neurosurgeon that had changed his life and he agreed to see me immediately. We decieded that I would have just one side done-the surgeon would go in on the right side of my brain to try to undo the damage that the symptoms had done to my left side: my left hand was frozen into a claw, I suffered from tremors and rigidity on both sides but predominatly on my left side. I had the classic look of a parkie-no animation in my face-the pd mask. I prepared for my surgery the way I do everything in my life: I prayed and sought the strength and courage that I would need through my faith, my family and my friends. Not once did my determination falter. And the surgery was an unbelievable success!! My strength had returned, I was so much improved that I looked forward to each day again...and I got greedy. I had to continue to medicate my right side which meant that I was overmedicating my left side. I felt great but a bit lopsided-kind of like Dolly Parton with half a boob job...and I thought to myself, if once worked so well, what would it be like to have both sides done. Then came the rumours that Medicare would quit paying for the procedure and insurance companies would follow suit by the next year. We made a leap of faith and scheduled another operation just 5 months after the first. I should have listened to my inner voice that told me to get out of the car at the light on the way to the hospital. I should have figured that this wasn't my day when they lost me in pre-op for an hour and a half without meds. I should have thought twice when the nurses had a spat over which came first-the halo or the mri. I told them that the halo comes first and then the mri. The second operation seemed to go on forever, I couldn't remember the pain during the first one but this time it was almost unbearable. I was hurting and had all that I could take when mercifully, the surgeon said: "Would you like something to put you to sleep? We've done as far as we can go for this time." I whispered yes. When I finally woke up, much later, it was with a deep sense of dread and foreboding. I didn't feel right and not only did I have a wicked headache, my head seemed to be so thick and full of padding. I feel back asleep crying without knowing why. We learned the next morning when I was given an mri that the intern who was to close my head up had inadvertantly touched a blood vessel in my globus pallidus causing a bleed. I will never know how close I came to stroking on the table. All that I knew was that my husband carried home a shell of a person-that I was unable to feed myself or bathe myself or talk or even to think entire thoughts. I was totally dependant on others to care for me. As I sat on the back porch with my dad (who had alzheimer's), watching the birds fly to the feeder in the back yard, I retreated into myself. Somewhere, somehow, deep inside I found the strength to fight my way out of the oblivion that had overtaken my mind and my soul and i came to take back my life. My neurosurgeon said that he was glad that he was not a betting man because he wouldn't have given me 1 chance in 50 that I could make my way back. I will never be the same physically...that part I have accepted, but I am still Joan and I am an activist for parkinson's awareness. Since that scarey time in my life, I have come to understand myself and my fellow Parkies in a way that has taken me through some of the thorniest paths of my life. I am a Catholic and I have spent hours going round and round about the issue of embryonic stem cells. I have met and become friends with hundreds of people with parkinson's, and I feel that I have a ministry on line to help others face their disease. I have had opportunities that I would never have thought possible. I have been to New York twice, I have co-authored, co-edited a book with my best friend Dennis Greene from Perth,Australia. The book is called "VOICES FROM THE PARKING LOT-parkinson's insights and perspectives." And it is a beautiful book-written by over 30 PWP's or their caregivers with an introduction by Helen Gurley Brown. I am the Creative Communications Director for the Parkinson Alliance which raises and distributes money for research. I am on the Board of Directors for PLWP.org (People Living With Parkinson's) an on-line support group that deals with the day to day problems of getting meds, finding housing and paying bills. With my friend and fellow PWP, Holly Angus, I have a shop called Jitterbug, which is in donated space and is stocked with things made by pwp's and the people who love them and the money goes to PLWP. This last year, I had a walk that raised $15,000 for the Alliance, with a portion of it going to help fund a researcher at the University of Illinois College of Medicine who has a patent on a procedure to use a patient's own blood to grow dopamine-producing cells. I also had a fund-raiser for Democratic Representative Lane Evans, a fellow parkie and all around great guy-he's the first politician that I have trusted since Senator Paul Simon. And I just finished a fundraiser that was held for us by Preston Jackson-a well-known area artist and jazz player. Please, please, Mr. Donahue, if you are still with me, please think about doing a show about the stories that I could tell you...about pain and suffering and the indominable human spirit and joy and anguish over each new medical breakthrough; of a life filled with seemingly insurmountable trials and overwhelming successes. Let me tell you about the hundreds of people who aren't famous but who have inspiring stories to share with the world. Please give us an opportunity. LINKS: http://www.pwnkle.com/jes/jes_web/index.htm -- Joan E. Blessington Snyder 50/11 http://www.pwnkle.com/jes/jes_web/index.htm <[log in to unmask]> "Hang tough...........no way through it but to do it." 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