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Larry Schneider Photo

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

13 Comments

I wish you the best of luck, while I may not know whats its like to have parkinson's it must be very hard and this story was very inspiring.

Rakip, Oct 3, 2011

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this story is so similar to mine, right down to the musician part. would you at all consider posting the name of the doctor you saw in philly? i'm not sure if that's allowed on here.

michael, Oct 11, 2011

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Anyone interested in contacting me can do so with the following info - LSJR at MACintosh dot COMputer

Larry Schneider Jr, Mar 12, 2012

I am 24 years old and have two boys ages 2 and 3. When I got Pregnet with my oldest I started to notice twitching in my body, tingling, stiffness, muscle cramps, and sometime I lose the feeling all together in certain part. I thought it was from being pregnet, three years later I still have the same symptoms and they have gotten worse. These feeling are keeping me awake a night, I cant sleep so I wentto see the doctor, my doctor said I may have PD but she isnt ready to diagnose me with it, whatever that means? I am suppose to see specialist to see what they say. Its comferting to know If I do have PD that I would be able to go on with my life like other have. I just wondering if I will still be able to do Nursing???

Milissa, Oct 13, 2011

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Get dissability Insurance NOW! dont wait untl you are officially diagnose ..I wish I had we also had small children when my husband was diagnosed at 27...move in closer to extended family ..you will need their support.

hope, Oct 19, 2011

You are amazing! Keep fighting the fight and keep being you!
I love ya my rockin' friend!!!!

BARB HAINES, Mar 2, 2012

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was you thumb flutter violent, fast and constant? or was a slow single twitch with several seconds in between the twitches? iam 22 years old and scared about PD. email me at kevinnash87@hotmail.com

kev, Jun 2, 2012

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It really does take a while for neurologists to identify PD.
I traveled a similar road but I thought I had PD (internet)before going to any doctors. Several would not make that diagnosis but when one did and I started Meds and was very relieved that they worked. I felt better than I had in aabout thirty years.

Barb, Jun 17, 2012

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6 years to dx me 2

Suzanne, Jul 10, 2012

I have had PD for the past 30 years. I was diagnosed at age 30. My PD worsens and then gets better. I take Sinemet and Amantadine. anyone lese taking one step back and two forward?

Teshie, Jan 15, 2014

Hello, everyone!

This past year was a tough one for me ... I'm still here though ... Alive and kicking. If anyone would like to reach out to me, you can send a message to me ~ LSJR@MAC.COM

Hang in there!

Larry Schneider Jr, Jan 21, 2013

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To make a very long story short...My 14 year old daughter was diagnosed this past summer with Juvenile Parkinson's. It took the Doctors over two years and several false diagnosis and finally UCSF figured it out with a DaTscan. We are currently going through the testing process to see if she qualifies for DBS to help with the typical Parkinson's symptoms.

Does anyone know of a website or a group that younger people and their families go to for support? It would help Jamie's spirits if we could fine someone her age that she can at least be a pen pal with. We were told that only a handful of kids under the age of 18 have been diagnosed...

Dan Block, Mar 3, 2014

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My son was diagnosed with Parkinson's Plus Syndrome in 2011 at age 35 after his sister noticed the tremors, poor posture, inability to walk correctly, get food to his mouth with a fork, or judge distances. He had passed out a few times and he often joked about his falls. As a parent without any prior experience or exposure to this disease, I wanted the the CO levels in his home heating system checked. I was concerned his continual alcohol consumption and daily pot smoking may have also been contributors to his symptoms. After reading about "drug induced" Parkinson's I was suspicious ( and in denial )that there may have been a chemical cause for his symptoms.

He also takes a combination of Sinemet and Amantadine, and has gone through a battery of tests, brain scans, and a series of evaluations and re-evaluations, and after nearly three years his condition has gotten worse.

The medication doesn't seem to last more than a few hours.
He still hallucinates on occasion about pets he once had. ( he sees dogs, snakes,) He is very impatient, argumentative, and laughs sometimes for no reason. His long-term memory works fine, and there's only hope for items in Stanley Steamer than.
I'd like to see comments by others regarding any experiences falling.
I would also want to know if Parkinson's can make someone cry?. . .or laugh? . . . does anyone have a someone else
to be bedside, or as a companion ( caregiver ) for a few hours per day.
He perspires easily and still believes he has the same toughness as 10 years ago.
Does anyone know of misdiagnosed Parkinsons, or can someone tell me about what my son might have going forward to

Rich, Mar 25, 2014

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