Larry Schneider Jr. of
Gibbsboro used to work 40-hour week, play guitar in a rock band and worked as an artist in his spare time.
He wrote music and performed with several bands three to four nights a week. He also enjoyed fishing, appeared in two movies and finally married Jennifer, the love of his life, and started a family.
Then, 16 years ago, at the age of 27, he felt a tremble or “flicker” in the thumb on his left hand.
“So, from 1997 to about 2001, that space of about five years, was when I started questioning my body’s performance,” Schneider said.
It took six years before a neurologist finally diagnosed Schneider with
Young Onset Parkinson’s Disease.
“That tremor in my thumb came and went,” he said. “What stuck around was the decreasing dexterity in my left hand, my fretting hand for bass guitar, and moments when I’d move, overall, slower.”
With a young family to care for, the diagnosis hit Schneider hard. However, his family has supported him from the very beginning.
“My entire family is very supportive, not just my wife and kids. My parents, who live a short distance away, come by four or five times a week to help me with dinner and putting the children to bed,” he said. “My father takes me to a lot of doctors appointments. And the other side of my family, my wife Jennifer’s side, are putting together an addition, complete with ADA approved access and rooms including a bathroom and outside deck.”
In an effort to honor his family and friends who have helped him throughout his journey, Schneider recently created a video for the World Parkinson Congress 2013 Video Competition.
There were 113 submissions from 18 countries. Schneider’s video, titled, “To the Givers of Care,” received second place overall.
“Without a doubt, it was my way of saying thanks to everyone close to me who gives in so many ways and doesn’t think twice,” he said.
The video is a slideshow of images and text played over a recording of Scheider’s acoustic song, “End Thing II.”
“It’s a short acoustic guitar song that I actually wrote close to 20 years ago,” he said. “I guess I created the music way ahead of time as if I knew it would be used for something like this. It fits so perfectly.”
Since his diagnosis, Schneider has been prescribed Sinemet, which he describes as the “golden rule drug,” which is usually the first medicine prescribed. It actually determines whether or not the patient actually has Parkinson’s Disease, he said. “If it works for you, it’s considered a good indicator,” he said. “I started out taking Sinemet and it wasn’t too long before I developed dyskinetic movements (the type that Michael J. Fox has been seen suffering from.)”
In 2006, he underwent his first Deep Brain Stimulation surgery during which the surgeon placed a device that administers a steady, controlled, electrical impulse to the brain in his Subthalamic Nucleus, which is typical for Parkinson’s patients.
“Having DBS can mean that the need to take medicine is lessened because the surgery administers a steady, controlled electrical impulse to the brain,” Schneider said. “An impulse that can mitigate the debilitating symptoms.”
Four short years later, Schneider developed Dystonia — a neurological movement disorder in which sustained muscle contractions cause twisting and repetitve movements or abnormal postures — on top of his Parkinson’s.
“It was suggested by the programmer of my (first) device that I could have DBS surgery all over again, this time getting bi-lateral implants that would target the GPi (Globus Pallidus interna) region of the brain,” Schneider said. “This is very uncommon, to have more than one set of DBS devices, however, I agreed to it because the first operation went so well.”
Schneider is currently off all dopaminergic medicines like Sinemet.
“I can’t tolerate the ‘on/off’ roller coaster,” he said. “My speech is effected, which could be the progression of the disease, the two DBS surgeries or a combination of both. My biggest concern is my gait and my mood, though both of those areas are currently being addressed by my physicians.”
But thankfully, Schneider is still able to play music and draw.
“I play music, not as frequently as I’d like, however,” he said. “When I do get the chance, I play better than I did 13 some odd years ago. I’ll always be connected to art in some way, shape or form. I have my sketch book filling up with curious, pencil and pen-and-ink selections of what I see around me.”
He said the most difficult part of living with Young Onset Parkinson’s Disease is the burden he feels he can be to his family. “My wife says that all five of us live with PD,” he said of his family including their three children. “I may be the one who has it, though, they also live with it. Even though what I’m dealing with is a progressive neurological disease, I feel optimistic that with the help of my doctors, soon I’ll be able to get to some more quality living with my family and friends.”
