Posted by: PD Warrior | April 9, 2016

The Invisible Man

Sometimes that’s exactly what I feel like –

Invisible.

You see, there are so many aspects to the Parkinson’s disease that are not noticeable, not readily observable, that people don’t realize they are there. There is pain involved. Aches in stiff muscles that I didn’t even realize I had – sore, not because I have over worked them, but because at times that’s just the way it is with PD, And because I don’t like to draw attention to it, I say nothing and it goes unnoticed .

Then there is the word search, a symptom of PD that is so insidious that most people don’t even realize it is a part of the disease. It’s when you are having a perfectly normal conversation and you have o stop, for what seems like forever, to find the word you are looking for. And to confound matters, the word is usually something simple, an ordinary verb, a common noun, a person’s name. People that know me well are so used to it that they have at times become accustomed to finishing sentences for me

Next there is the changes in depth perception. Personally, I find this to be extremely annoying. Some people with Parkinson’s have difficulty judging distances when reaching for objects, knocking over beverages at dinner because they looked farther away than what they really were. For me, I have problems going down stairs. I need good light in the stairway, and even then I will often stop at the top of the stairway and stare downward for what seems like an eternity, trying to judge the distance from one step to the next. And if the stairs are carpeted with a busy print pattern – forget it. I will cling to the railing for dear life with every step I take. Print rugs are an especially confounding thing for me. The patterns seem to jump out of the wrong, giving things an almost 3-D effect.

I could go on listing the unseen symptoms of Parkinson’s, but I think you get the idea.

Yet that is not what makes me feel invisible.

What makes me feel unseen are the parts of me that seemingly no longer exist because of PD.

Intrinsic parts of my life, things that mean so much to me that they define my personality, but because of limitations that Parkinson’s has put on my ability and agility, I can no longer do them.

For example, I am first and foremost a musician. Or at least I used to be. Piano was my forte (pun intended), and even though I still play, I do not play up to my own expectations. I used to be good…really good…scholarships to Chautauqua Institution in my teenage years good. Now, despite what my friends and family say, I am mediocre at best. The same goes for my guitar playing. Oh, I still play. I just don’t play as often, or as long.

Next is my artwork. I used to draw and pant fairly well. Nothing professional, but still pretty good. Now, I just don’t have the dexterity. Especially during the “off times” when the medications aren’t working as well as they should.

But perhaps what I miss the most is my motorcycle. I love to ride. I was born to ride. I no longer ride. I just don’t have the balance. I probably would be okay for a little while, but Parkinson’s has greatly affecting my balance. Where most people, if the start to lose their balance, they can easily recover. When I start to lose my balance, even a little bit, I am pretty much a goner. And since “road rash”, or worse yet, “road kill” are not on my list of things I want to do today, or any other day, I don’t ride.

Then there are house repairs. There are certain things around my house that need to be done. Things I normally wouldn’t have thought twice about doing myself – outside repairs on my house that involve using a ladder to reach the 2nd and 3rd stories. And since using a ladder requires a certain amount of balance and/or coordination, along with a modicum of depth perception thrown in, those things will go undone until I hire someone else to do them.

Don’t get me wrong. I’m not writing this to get an “oh, boo-hoo” response. I do not want pity from anyone. I am writing this so that the next time you look at someone with Parkinson’s, or any other disease, perhaps, just perhaps you will look past what you see, and recognize the invisible man living within.

I still play the piano and guitar, and will continue to do so until the last breath has left my body.

I am still an artist, I’ve just changed my focus from drawing and painting to woodworking.

As for the motorcycle…well what can I say. Ask anyone that has ever ridden. Once a biker, always a biker. I still have my motorcycle license, and once I can afford a “trike” or a Spyder, I will be back on the road. Until then, I have an Irish blessing for my biker friends –  May you always ride in blue skies and sunshine. But if you can’t do that…may you still always ride.

 

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