I was diagnosed with Young Onset Parkinson’s Disease 12 years ago. It seems a lot longer than that, but no, it was 12 years ago. That’s not, however, when it all began.
I started noticing the symptoms at least a year prior to being diagnosed, more if you count the non-motor symptoms of the disease that I didn’t even realize were part of PD until after I was officially diagnosed.
The first thing I noticed was this annoying little twitch in my thumb when I was warming up at the piano, getting ready to accompany my church choir for a performance of a contata. It wasn’t there all the time to begin with. It would just appear here and there, kind of like a nervous little twitch. Which for some people might have made sense, but for me made no sense at all. At least the “nervous” part didn’t. Playing the piano in front of people has never made me nervous – truth be known, I lived for playing in front of people. So this stupid little twitch was mind boggling. Luckily it stopped right before I had to play, so I thought nothing more of it.
Until a day or two later when it reappeared, and lasted a few hours longer…
And the day after that, when it lasted longer still.
Then the next day, and the next one…
Until eventually the annoying little twitch decided to take up permanent residence.
I wasn’t sure what to make of it at first. Well, that’s not quite true. I’m an RN, and I had my suspicions, but I didn’t want to face that possibility, so I pretended not to know what to make of it. Being stubborn (and more than a little stupid when it comes to taking care of myself) I avoided going to the doctor about it until it got to the point where I really couldn’t ignore it any more. By that time I had started to notice my left foot shuffling at times when I walked, but since that wasn’t obvious to others at the time, I decided to keep that part of it hidden. Couldn’t hide the twitching thumb anymore, because it had spread to other fingers, and at times my entire left hand. Thankfully it wasn’t effecting my right hand yet.
After a while I had to break down and tell the doctor about it, and he promptly sent me to a neurologist who said it was all in my head. After all, I was too young to have Parkinson’s, despite the fact that it looked like PD, walked like PD, and by that time my arms had started to not swing when I walked.
I went through a year of testing; bloodwork, cat scans, MRI’s, and a PET scan, only to have that particular neurologist continue to claim that it was all in my head. When I explains that I was a nurse, and wondered about Parkinson’s, he more or less told me I was crazy and continued to say I was too young. Instead he tried me on a medication that they give people with familial tremors [familial tremors and PD are two very distinctly different things]. That medication gave me violent mood swings, and didn’t help any of my symptoms. And when I brought that up to him, he told me I should keep taking the medication and “just be aware that things like that might happen.”
I said nuts to that, and found a new neurologist. One that actually knew what he was talking about. He looked at all my test results, spent over an hour examining me, and almost another hour talking with my wife and I about what was going on, my options, and what to expect in the future. He started me on a low dose of sinemet, and that, as they say, was that. The tremors came under control. I didn’t shuffle as much when I walked, and my arms…well they still hung unmoving at my side when I walked, but hey, it was better than nothing.
That was 12 very long years ago.
I have gone from taking one small pill a day to taking three and a half different pills every three hours while awake. My tremors, while they aren’t 100% under control any more, they still aren’t so bad that I can’t stand it. My feet shuffle a little more than they used to, and I have developed an uncanny knack for tripping over lines in the floor when I least expect it, but hey, that’s okay – I am living proof that “bumbles bounce.”
There are other issues that I have, other symptoms caused by the Parkinson’s, but they are items to be discussed at a later date.
Parkinson’s has caused me to change a lot of things in my life, including my position at work. Physically I am no longer able to be a floor nurse – it was too exhausting. And luckily the facility where I work had a desk job for me.
All in all, life is good. Not because of PD, but despite of it. Like I have always said…I am too stubborn to quit, and too stupid to know when I’ve been beaten.
And oh, by the way – on the bright side, Parkinson’s has really improved my golf game – I still suck at it, but at least now I have something to blame it on!