Dave’s Parkinson’s Diagnosis APDA Story Dave’s Parkinson’s Diagnosis “Sentencing” DIAGNOSED WITH PARKINSON’S AT 46 My sentencing took place on March 25, 2005 a Friday, in a neurologist’s office in Lake Geneva, Wisconsin, when it was made official, as Dr. Buoyini, in his Peter Sellers as Dr. Strangelove accent, told us that all the test results suggested a diagnosis of Parkinsonism, most likely Parkinson’s disease. It was one of those dream-like moments where time seemed held suspended and left the words hanging motionless in the air, without impact, without surprise, without meaning, as I looked around the room at the blood pressure instruments, the mirrors, the exam table, Dr. Buoyini, in his white lab coat, seated across the room and to my left, and finally to my right, where my wife sat, tears silently streaming down her face. This took me by complete surprise, and still in that split moment where everything had slowed down and was seemingly standing still, I asked myself, why is she crying, and then time kicked back into gear, rushing forward and on its way picking up reality as a passenger, shattering the dream trance, and we sat there, the five of us, the neurologist, my wife, time, reality and myself. I remember saying thank you to Dr Bouyini and shaking his hand. I was 46 years old when I officially became a “Parkie”. My diagnosis of having Parkinson’s disease ended about a two month series of tests and exams to figure out what if anything was wrong with me that began with a visit to my family physician for a routine physical in the previous January. I was a typical overweight and out of shape middle aged man (I’m also bald – not that that has anything to do with anything, but you may as well get the complete picture now), and was motivated to make the appointment by fears of high cholesterol and heart disease and prostate problems. Any concerns I had going in to the physical centered on the need for that most dreaded of all procedures, the rectal exam. Parkinson’s disease wasn’t even remotely on my mind at the time. Dr. G. was new, the latest in what had become a revolving door of physicians at the practice “I occasionally have an involuntary twitch with my index and middle finger on my left hand.” He began the physical, doing the stethoscope, the eyes, ears and nose, talking to me and asking me questions the whole time. He asked me if I had any concerns about my health, and I told him I was worried about my cholesterol, and oh, by the way, I’ve noticed in the past three or four months I occasionally have an involuntary twitch with my index and middle finger on my left hand. He nodded, and said “Essential tremor, in all likelihood.” Then out came the rubber gloves and the dreaded procedure, and suffice to say, Dr. G. was thorough and would take no short cuts. No perfunctory exam here. He talked to me throughout, told me he knew this was uncomfortable, then added, lightheartedly, “relax.” Relax? For a moment, I felt like the wooden dummy in a twisted ventriloquist’s act. Read more about tremor in Parkinson’s Afterwards, as I got dressed, the late afternoon sun crept through the blinds of the examining room much the same way it creeps through the blinds of a cheap motel room. Across the room, the doctor, who for one split second I imagined was sitting back smoking a cigarette, watched, when he said, “Has your wife said anything about you moving slowly? Or having a blank expression on your face?” “No”, I said, thinking, of course I have a blank expression and am moving slowly after what just happened in this office! “It’s probably nothing”, he said. “It’s just that these things along with the tremor in your fingers are sometimes an indication of Parkinson’s disease.” He said it was likely nothing to worry about, but he wanted to make an appointment with me and my wife in a couple of weeks and get her perspective. I left thinking less about the tremor and the Parkinson’s possibility than being relieved that I had survived the exam and wouldn’t have to go through that for at least another year. I mentioned the follow up appointment to Deb and we talked a bit about it but neither one of us was real concerned. At some point in the next day or two, with the physical still on my mind, I performed a simple test: I rapidly drummed the three middle fingers on my right hand on the table where I was sitting, starting with my fourth finger, then my middle finger, then my index finger, just like, being the famous life-long fidgeter my Mother used to complain I was, I had done thousands of times before. After doing this a few times, I tried to repeat the sequence with my left hand, and much to my surprise, I couldn’t do it – the three fingers weakly made contact with the table, and the fourth and middle finger were unable to move independently from each other, and the index finger spasmodically went up and down twice before the other two fingers were able to make contact once with the table. I showed this to my wife, and we agreed that maybe there’s something to this Parkinson’s stuff. Then came the first appointment with the neurologist, Dr. Bouyini, followed by the series of tests to rule out Multiple Sclerosis, Lou Gehrig’s disease and even Lyme disease. Deep Brain Stimulation Deep Brain Stimulation is a surgical procedure in which thin electrodes are implanted into parts of the brain that control movement. Learn more about surgery Deep Brain Stimulation, and looking back after seven years That was seven years ago, and looking back at a couple of other events, I know now that I had the disease at least two years prior to my diagnosis. My instance of Parkinson’s Disease is of the rigidity variety; although I occasionally have some tremors, they aren’t too pronounced, and my primary symptom during “off” periods is a rigor-mortis like stiffness that spreads through my body until my Stalevo (the form of levadopa/carbidopa I take) kicks in. In January 2010, I underwent Deep Brain Stimulation surgery, and it has helped prolong the “on” periods, the time between taking my meds, and has helped me sleep much better at night. There have been some side effects to the surgery, impacting my speech and my handwriting, and I still experience periods of intense fatigue during the day, but overall I am doing much better since the surgery than I was before. Sometime after being diagnosed I started experiencing frequent and intense insomnia, awake for several hours during the night. Eventually, with nothing else to do, I started writing during these episodes, writing about what I was experiencing, what I had been dreaming about, whatever was on my mind, and now, all these years later, I haven’t quit. Writing has provided for me a tremendous outlet for dealing not just with my disease but also all the challenges and rewards that are a part of being middle aged. I have combined many of these writings into a book-length memoir that I am still shopping around in search of an agent. I am also working on a novel, and have a website (djgourdoux.wordpress.com) where I post whatever is on my mind at the time. APDA helps thousands of people each year live life to the fullest in spite of a Parkinson’s Disease diagnosis––and we depend on the generosity of donors like you. If you’d like to lend a helping hand, join our cause and donate today.