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Participant Information

Larry Schneider Jr

City:
Gibbsboro
State:
NJ
Country:
USA
Essay:

Hello, my name is Larry Schneider Jr and I have been living with "the beast" for just over 13 years now. I'm 40 and it took 6 years and 4 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?!Ē 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 Dx'd 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 itís one of three things. The first was E.T., 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.

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 4 years ago I had DBS (Deep Brain Stimulation) surgery 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, I and the millions of sufferers will finally get some relief.

Since I have been an artist my entire life, I wanted to use my skills to make a difference for a very personal cause. Recently, I found a way to do so through the Parkinsonís Quilt Project.

I decided to create a lighthearted quilt panel that would reflect my positive attitude and the enjoyment I find in creative activities. My contribution is entitled, ĎPark N Sons Martini Bar and Lounge (Always shaken, never stirred).í To spread the word about the Parkinsonís Quilt Project and its purpose, I posted news and photos about my panel on Facebook. The positive response from nearly 100 friends and family members was touching.

Shortly after creating this first quilt, I saw a posting asking for musicians to submit quilt panels to be displayed at PDFís 2010 annual gala, Bal du Printemps, in New York City. The event was focused on the power of music, in large part because it honored Bob Benjamin of the Light of Day Foundation, who has raised over $1 million for PD by hosting concerts all over the world. My love of music motivated me to create another panel. This one features an image of me playing bass guitar, with a quote by Henry David Thoreau, ďI know of no more encouraging fact than the unquestionable ability of man to elevate his life by conscious endeavor.Ē

With the support of friends and family, I was able to get my project off the ground. Iím an artist, so if I can provide images, quilt pieces, or electronic art, that will help this cause, Iíll do so. I will load some song samples soon. I feel positive about anything I can do to help raise awareness about Parkinsonís disease.

Cheers!
LSJR

Contact Larry:
lsjr@mac.com
(856) 701-7861