The Invisible Side of Parkinson’s Disease

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By Maria De Leon

“If you are a dreamer, a wisher, a hope-er, a prayer-er come sit by my fire…. Shel Silverstein

Poem Invitation

Unlike the magical place described by Shel Silverstein in his poem that starts off with “There is a place where the sidewalk ends and before the street begins….” those of us who live with Parkinson’s disease know an entirely different realm one that does not always lead to childlike joy and heaven like peace rather to a reality of struggle and frustration that may be dark and dreary at times. Nevertheless, I continue to strive each day to find happiness and gratitude in the mundane even as I watch my Parkinson’s advance just a tad each day.

 “You look great!”  echoes in my mind, as I struggle to get dressed and start the day. If I could only feel as I look. I sigh getting both of my legs caught on one pant leg nearly causing me fall to the ground flailing my arms all about and with that motion all the clothes on the hangers next to me come tumbling down. I stare at the mess on the floor beginning to perspire as I am still struggling to put on my pants. I attempt to pick up the clothes on the ground with my feet since I am too stiff to bend down and have a frozen shoulder preventing me from raising it fully to grab the hangers dangling on the rack. I inhale deeply and blow out a loud exhale in frustration as I contemplate the mess all around me wondering when I am going to be able to put the pile fast accumulating, on the island by now, from all the fallen clothes back on its hangers. I Definitely need more dopamine! If  only it was as simple as that.  I know that’s the answer.  But how do I make my body understand what my brain needs to function and not fight it as if it was some foreign toxin. Half-jokingly I exclaim,  this fight is not over!  I am in charge here and smile inwardly to myself thinking: “well, at least I look good.”  I find comfort that at least I still can pull it together and appear ‘normal.’

Never mind I can’t sleep until the wee hours of the morning or that I can’t function until nearly noon because it takes me at least an hour after I wake up to get my bearings on. That any attempt to communicate with me prior to this will be met with great resistance and in- cohesive mumbling. Forget  making any crucial decisions before the brain fog lifts. Until that happens, I cannot tolerate loud sounds nor bright lights. A drop of sunshine makes me retrieve as if the light touching my skin would make me spontaneously combust as we have all seen in the old vampire movies. So I wear my Jackie -O shades everywhere only fueling the image of the “Parkinson’s Diva” and I laugh as I retrieve into a dark area of the house where I can relax and take off my shades and wait for medications to kick in and side effects to wear off before I can tackle the day and so it goes… yet despite the daily challenges, struggles, and mishaps I still think of the beauty of life and all the friends I have made along the way and all the firsts I have lived as a result of PD.  I stop and wonder how far I would be able to travel in this path?  I say to myself that if  I purposefully continue to “walk with a walk that is measured and slow” I think one day despite all my invisible struggles I too will reach the site “where the chalk white arrows go” and “where the moon-bird rests from its flight.”

Poem by Shel Silverstein – Where the side walk ends

copyright @2022

all rights reserved by Maria L. De Leon

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