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I'd sent this to Alan Bonander sometime in 1994. Mary Yost reviewed the first draft of this and upon not hearing from me, called me to see if it looked okay to print. I told her that since my original draft, I had been "let go" by the band I was in and had retired on long-term disability from my day-job. After hearing the details, she made some changes and sent it back to me (she's an often overlooked "master of the written word"!). This was published 12/94 in the Movers and Shakers, the YOP magazine here in California. Here 'ya go............. ----------------------------------------------- Me and My Banjo "I always said I wanted to be somebody ... I just wish I had been more specific." Lily Tomlin I am David, 36 years old and diagnosed with PD for four years. Music is the brightest part of my life. I have been playing music since I was 13 years old, when I saw a kid about my age playing banjo on a local television show in Memphis. I've been hooked ever since. I have won banjo and guitar contests, played in a variety of bands across the United States, and have taught (formally) at least fifty people how to play the guitar or banjo. And then came Parkinson's. The symptoms of PD (first noticed in 1985) started to affect me significantly in 1988, a year after I moved to Santa Rosa. At first, they were a nuisance, but I was still able to function well enough for the most part. I joined a bluegrass band and found that my late-night banjo playing had a new twist. As the evening wore on, my dexterity and speed were greatly reduced. My fellow band members were as confused as I was since "David was playing fast just a while ago... what's up?" I also heard people remark that "you play the banjo really well, but you need to smile more." Not knowing then about the PD mask, I assured people that I was smiling inside (though it rarely made it to the outside of my face.) In 1988 I went to Kaiser Hospital to ask about these peculiar physical traits. The doctor, who was not a neurologist, checked me out and informed me "You're experiencing an isolated muscle tremor. They can come and go at any age. I wouldn't worry about it." That was a relief. I'd dealt with a degenerative bone disease _ perthes _ and walked on crutches from second to fifth grade. I'd spent the last third of eighth grade in traction after getting hit by a car and breaking both legs. An isolated muscle tremor I could handle! In 1990, after hiring on with the City of Santa Rosa, I went back to Kaiser. The doctor who saw me said "I'm not a neurologist, but that looks like Parkinson's... but you're awfully young to have Parkinson's!" (This remark would be repeated many times from that point on.) After seeing one of their two neurologists and going through the exam, MRI, etc., my journey began. My first neurologist (does anyone stay with their first one?) started me on three 25/250 Sinemet a day. As you can imagine, the roller coaster ride from tremor to incredible mobility began. The side effects from this drug put me through many changes. At this point, I was hard pressed to separate the emotions experienced dealing with knowing I had a chronic illness and the side effects of Sinemet. I said then, and continue to say, "If this disease would just stop progressing right where it stands now, I think I can handle it." (I despise pity and tire of hearing people tell me about something they read or saw on television pertaining to Parkinson's and the fact that "they" are coming closer to a cure each day.) The first PD support group I attended in Santa Rosa was disappointing and depressing. I walked in with a hope that this group of people and I could "connect", and greeted them with "What's shaking?". No one even smiled (masks?). Their presentation that day was about "living wills" and "using walkers". I wanted to talk about PD and its effect on dating and roller skating. After the presentations, everyone got up to leave. I asked, "Don't you talk about what it's like living with PD or the effects of different medicines?" I needed to connect with a younger age group of people dealing with PD. A local neurologist gave a talk at this same PD support group about the narrowing of the "window of opportunity" for Sinemet, the period when the medicine is effective, signaling the need to supplement stronger medicines with even more side effects. I was sitting in the front row with tears running down my face. I told him "I'm 32 years old and already taking 750 mg a day. What can I expect in the near future?" To which he answered, "What does modern medicine know? Check it all out: meditation, acupuncture, yoga..." I realized in retrospect that he'd had to switch directions seeing that he had a newly diagnosed "Sinemet junkie" with fear written across his face, hanging on his every word. I'd heard about Eldepryl and the promise of its slowing or even stopping the progression of the disease. My first neurologist refused to prescribe it for me. He felt the research was inconclusive and the side effects too risky. So I switched to the other Kaiser neurologist, who also didn't believe in the drug but felt I was entitled to try it. He lowered my Sinemet dosage to 300 mg/day _ which was not enough. He told me, "David, there's a number between 300 and 750 that will enable you to continue working and to still play your music at night. Find out what that number is and stick to it!" I worked four years for the City of Santa Rosa in the Traffic Department. I was primarily involved in traffic signal timing and data collection. It became increasingly harder for me to be as productive as my fellow employees. I worked with my union representative to write that "I am a disabled employee and wish to be accommodated in my job under the new ADA law." My employers did not accommodate me. They chose instead to document any and all shortcomings, and set up a system of harassment that was cruel. For instance, the typical length of an annual employee evaluation is one to two pages. My last evaluation was ten! After I threatened to file suit for discrimination and harassment, the City Manager and the head of Personnel quickly proposed that I leave immediately on long-term disability. So, at age 36, I retired on disability. This choice was definitely the best choice since staying any longer would have produced stress that I was no longer capable of handling. However, they missed an opportunity to learn how to deal fairly and productively with someone with a degenerative neurological disease. Since my initial diagnosis, I stopped attending music festivals due to the unpredictability of my Parkinson's and my desire to avoid displaying my new disease to old friends who had played with me in the past. Gone was my ability to play my music whenever I wanted (night or day) at any tempo anyone might choose. The thought of playing well one minute, then feeling my musical (physical) ability slip away the next, while people looked on not understanding what Parkinson's is or how it is affected by the medicine, was intimidating. I still teach guitar and banjo lessons a bit. Though when I show my students, "Hold your hand this way" and look down to see my trembling hand, I quickly tell them, "But not that way!" I often describe the tremor in my right hand and leg as "channeling the San Andreas Fault". One person responded with, "You use humor to disguise your pain, don't you?" Yes, I do. Because it works! I joined another bluegrass band two years after I'd been correctly diagnosed. I told them right off about my Parkinson's and how it affects me. I explained the effects of my medicine and the need to "sit out" or let someone else take my part when the medicine isn't working. My worst-case scenario happened with this group at a small cafe in Sonoma. When I was called upon to start a song, I couldn't hold my right hand still. My fingers were sporadically brushing the strings. I turned away from the microphone as if my instrument were out of tune, and another person started the song. The band asked me to stop performing music with them due to the unpredictability Parkinson's had on my playing and my inability to play faster songs. This was only a few weeks after I had retired from my job. I've found that music, which I love with all my heart, has now become a physical and mental challenge for me. Though I have more time to play now, that seems a "cruel trick of nature" since my dexterity is limited to those times of "windows of picking opportunity" throughout the course of any day. It's VERY SCARY at times, and I would gladly trade my free time for an opportunity to win banjo contests again, or even to play music with others without worrying if I can "keep up" or if the side effects are going to throw my timing into a dither. I've had to let go of my dream of being a famous musician, and set my goals in another direction that is physically attainable for me. Changes that I have initiated since September 4, 1994, my retirement date, have included buying a new bed (top-of-the-line, pillow-soft), trading my five-speed Toyota for a newer car with automatic transmission and cruise control, and getting a headset (free) for my phone through Pacific Bell. The improvement of my days from just these three things has made all the difference in the world for me. I'm currently working with the Parkinson's Action Network in Santa Rosa on some typesetting projects concerning ADA and employees with Parkinson's disease, as well as helping disabled friends to do things they can no longer do themselves. This type of service is very fulfilling to me, and allows me to let go of much of the fear I've held on to about the disease and its impact on my life. I'm constantly amazed at peoples' varied reactions to my situation. A coworker once told me, "David, if I were in your position, I'd probably be mad." To which I replied, "Yeah, but then what?" Others have told me, "David, I just want you to know that I think you're very brave going through this". To which I replied, "What's the other choice?". With an unknown quantity/quality of life ahead of me, I live each day to the fullest. I want to burn brightly while I still have the chance. David Boots 1532 Brookside Dr. Santa Rosa, CA 95405