I Can Remember It Well

Diagnosed at 33

Hello, my name is Larry, and I have been living with "the beast" for just over 14 years now. I'm 41 and it took six years and four neurologists to finally land a diagnosis of YOPD. Yes, that's right, if you just did the math you know that I was 27 when I felt my first "twitch." I can remember it well, not fondly but well, the instant my body was destined to be imprisoned by Parkinson's. It was an afternoon in November of '97 and I was on my way home from work. I reached for the turn signal as I was about to make my last turn and there it was ... a flutter in my left thumb. "What was that?!" I wondered but just as quickly as it was to appear, it disappeared. Over the course of the next couple of years I witnessed the dexterity in my left hand diminish. I was in a cover band playing bass 3 to 4 times a week so the movements, or lack thereof, were under a lot of personal scrutiny. My right hand still functioned normally, thank God, so I developed a way of playing so that my right hand could pick up the slack, so to speak. Imagine, if you will, teaching yourself an instrument and getting to the point where you are pretty much able to play whatever you want (I was far from being a master but I could certainly hold my own) then standing by as your precious gift was slowly taken away. When that started happening I immediately sought the attention of a neurological specialist. Then another and sadly, yes, there was a third. Not one of these "specialists" properly diagnosed me so, I put up with the lack of dexterity and hoped that it wouldn't get any worse. This was right around '98/'00 so until I was finally diagnosed in '03, I put up with that slow but steady progression. A person can only tolerate so much. By the winter of '02/'03 it was definitely apparent that there was something more going on than just a "pinched nerve" or "mild stroke." So, on suggestion from my little sister, I went to see a well known neurologist in Philadelphia. He performed the usual physical tests, checked my reflexes and asked a series of questions. He said it’s one of three things. The first was ET, no not the extra terrestrial, Essential Tremor, but he suspected that it was likely not this. The second was Wilson's Disease which he explained was a chemical imbalance in the blood caused by an improper percentage of copper. Oh, he also said that there was a cure for this disease ... the next one, he stated that there is no known cure. That third condition was Parkinson's. PD? What was that all about? I knew of only one family member who had it and he had passed away years before I could actually remember him. Michael J. Fox had announced a few years ago (at that time) that he had it, but I didn't know him and what I had seen of him was maybe not the image of perfect health but he certainly didn't look bad. So as soon as I could, I started gathering as much information from the Internet as possible. Sheesh, this story is getting long ... I'll start wrapping it up. After gathering research and trying out Sinemet for the first time, I just moved forward with everything in my life. I continued working, I still played in a band and I was also a husband/father to my family. Almost five years ago I had DBS (Deep Brain Stimulation) surgery in the STN region, then again this past March in the GPI area and although I have amazing relief from the everyday, confining symptoms of the disease, it is still not a cure. I can only hope that within my lifetime there is a medical breakthrough and maybe then, me and the millions of sufferers will finally get some relief. Cheers! LSJR