Come spend the night with me.
Nights are the Worst.
They think its just the tremors and Michael J Fox has it.
Correct. However, there is much more to Parkinson’s Disease.
There is no cure. It is degenerative. No two PD’ers have the same symptoms. My nights come with the worst of symptoms.
Twice a year I go to Shands Movement Disorder Research Department where I spend several hours addressing and documenting my progression for research purposes and for my ongoing treatment.
Very few people associate pain with Parkinson’s.
**So….close your eyes and sleep with me, it’s nighttime …
Every night I climb in bed exhausted knowing that tonight’s the night that I will miraculously get 7-8 hours of restored sleep just like I used to. Ha! “Like hell that’s going to happen” PD nudges my left leg with a spasm that sends my leg uncontrollably out to the left.
My sleep comes in 3 hours slots which do not feed my broken brain nor heal my fading body.
Strangely though, I have slept enough to function during the day…of course with the help of medication however, not enough to flourish and thrive in todays world.
I tell people that I have accepted my new reality…I even say that I’m ok with it and in actual fact was given it for a purpose. In all honesty that such a crap lie. This level of sleep deprivation is not acceptable however much i have adjusted to it and use it to do my art, read and write…all the while wishing for the times that i could sleep for hours.
When my body does wake me up with restless joint jerking it means my previous medication dosage after 4 hours hours has worn off . Now I am in excruciating pain for the next 45 to 60min. It feels like a cement truck is pouring tons of cement over my body, starting at the tips of my fingers, slowly crushing every bone while working its way down to the tips of my toes.
Staying in bed waiting for the medication to kick in, is, in itself insufferable. My body feels as heavy as a ton of bricks, my right foot far from synchronized with the right I manage to get moving in order to stop moving. The pain is less when consciously moving. Mt body finds a place in my brain to stay at the level of discomfort which, thank goodness is less than pain. My mind though has escalated to such an extent that if I don’t do something consciously like rolling around on a hardwood floor crying while pounding music in my ears try with all their might to supersede the pain and uncontrollable movements. It is nights like these that I find myself wishing to cease existing.
Too often and, it is to no wish of my own, the medication and dopamine decide not to play together adding to what will be a long, lonely night full of daunting thoughts like..
This is a degenerative disease, the dopamine cells are dead…there is no hope to bring them alive…things are going to get worse. I will not take anyone down this road with me. How will I care for myself.
Out of the blue my body gives up and either succumbs to medication or sheer sweat drenched exhaustion, or the relief and release of painting, the intricacies of digital art or the repeated rhythm of music. I finally feel the soft wonderful sensation of calm. I thankfully fall asleep.
Dictated by my medication my body starts waking up letting me know its morning, the birds are singing, the squirrels are waiting for their breakfast of peanuts and of course NOW my morning meds will work perfectly and within minutes. The dreadful night is forgotten. My family and friends will not see the broken and detached Parkinson’s person of the night. They will see who they have always known.
Because of who I was and am I will refuse to let Parkinson’s get the better of me…every time it subtracts I will add.
Art has been my biggest addition win…its MY story. Every painting, every photograph every passage written is a reflection of me. With every emotion within the art is gratitude to my family, my friends, Dr. Isa, Advent Health Neuroscience.
To Ashleigh, Eva and CityArt thank you.
And to Gulliver…you make me smile.
CityArts Downtown Orlando.
November 6th 2021.
6pm - 10pm.
Note: Dr. Isa (Neurologist), Advent Health Neuroscience and myself will be there presenting “I don’t suffer from Parkinson’s we coexist” There will be open mic time for any questions.