Why consider a surgical procedure and why consider DBS? I am a living example that medication has its limits. The more medication you take as Parkinson's Disease progresses, the more side effects you experience. In my case, "the treatment is sometimes almost worse than the disease." I began to wonder how much more medication I'd have to take and how often. I read that many patients end up taking medication every hour or two. That sold me on the surgical alternative.
Only DBS surgery has resulted in a 92% reduction in tremor that persists past eight years. Recent studies with STN stimulation have resulted in an 80% reduction in the Unified Parkinson's Disease Rating Scale as well as a 65% reduction in Bradykenesia. Deep Brain Stimulation, when compared to other surgical procedures, has a much lower morbidity rate, estimated at 2%. I think that my Emory neurologist believed that he was giving me the best advice when he said that I was doing so well on medication and he couldn't understand why I would consider DBS at this point. I now believe that advice, well intentioned as it was, was wrong. Too many of us are putting off surgery and trying to control our disease with medication. Those patients taking levodopa drugs beyond the fifth year of diagnosis have an 80% chance of experiencing motor complications which include the medication wearing off prior to taking the next dose, dose failures, rapid changes in motor symptoms, so-called "on/off phenomena", land dyskenesias, involuntary chorea, and dystonia. Finally, deep brain stimulation surgery can be completely reversed when a solution is found for this crippling disease. So, this really was a no-brainer for me, no pun intended.
Again, the bottom line for me and for the thousands of others who would be excellent surgical candidates is the "quality of life" issue: surgery vs. an ever-increasing amount of medication with less effective results.
If you've stayed with me and read all of this, let me summarize briefly. Remember Buscaglia's description of the little old man whose worldly advice was to "keep your mind full and your bladder empty." Thank you, kind sir. You have given me a partial answer to my quest. I no longer fear for my future, whatever that may be.
Thank you, Michael and Kelly, and the medical staff at Shands. Special thanks to Laura Jane, Jennifer, and Allison for their special insights and their love. I hope they will be as blessed as I've been. My son-in-law, Seth, did a good job keeping my daughters in line in Gainesville. HA! I also knew that if something had gone wrong in surgery, he would take care of everything and everyone. Our best friends of 34 years, Linda and Hollis, offer us amazing love and care. You are always there for us and we are so thankful that you are in our lives. My siblings and their families offered me information and have encouraged me all the way. Our special friends- Anni, Oscar, Hinson and Evelyn, Bob and Cindy, Jim and Ann, Bruce and Julie, Carmen and Lori, Mark and Karen, Michael and Andrea, Bill and Pat have supported me since the beginning. I am ever so grateful. Elena, our massage therapist, Yoga instructor, and Eastern meditation expert has enriched our lives tremendously and has opened a new avenue for learning and understanding. Thank you. Our internist and his nurse have followed me from the beginning offering support, removing staples, cheering me on. Dr. Rodrigues and Dimple, you are great! Monta and Peggy Burt, owners and operators of the Laurel Oak Inn in Gainesville, have provided support beyond description. As I've said earlier in this narrative, they've become family in this process. Finally, my thanks to Nancy-no one could have been more supportive, caring, and, too often, forgiving.
For those of you who have followed this personal inquiry to the end, you know that my faith is still largly outside the institutional church (you probably won't see me in a synogogue or church on the Sabbath). I am more convinced than ever that Nancy is right. There is someone guiding my writing. I wish you success in your search for a better life.
Finally, I'm optimistic that a cure will come for Parkinson's Disease, but I will not pray for a cure for me. The God of the universe has been too good to me.
If any of you have DBS in the next months, somewhat as a result of reading this, I will feel that this has been successful. If one of my Parkinson's friends takes the plunge into the deep end of the pool, so to speak, I will be even more excited. Nothing to date, to my knowledge, has been so successful in improving Parkinson's conditions than DBS surgery.
So you can live in the present and fear the future or you can take the steps that may well improve your life. Timothy Leary is quoted as saying, "turn on, tune in, and drop out." My advice would be to turn on and tune in.
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