In 2014, I signed up for health insurance through the Affordable Care Act. I was given a subsidy so my monthly premium was within my budget. During that same year, I started to take the drug Pramipexole, a dopamine agonist which fools the brain into thinking its dopamine. My brain does not make enough of this neurotransmitter resulting in my having Parkinson’s. I take 150 MG a day and at the time I paid about $120 for a 90-day supply through my health insurance. Continue reading Mr. Parkinson and the Politics of Pharmaceuticals
In the winter of 2010, on a bright sun-drenched morning, while driving in the country through the chilly air, I saw an owl flying at my sight level, aside of my vehicle. What was this nocturnal bird, clearly out of its element trying to tell me? My mind wandered back to Native American mythology; how all’s connected in the stream of life; how animals are spiritual beings that guide us along the path. I thought of so many things that this owl could symbolize. With so many revelations that had eluded me never to return, I had to have the answer? Continue reading Signe
Words used in different form and measure tell the story of our lives. Such stories conjunct other stories creating a collective story, word by word. When perfected, and connected, they sound of music playing in perfect harmony. They dance to the rhythm of meter and time on the road to meaning and understanding.
*adapted into Echoes In The Dark /
Having Parkinson’s disease comes with its share of pain, from my right hand that shakes too much to my feet being sore from walking with my toes curling under. But some things are just a pain in the mental ass.
Parkinson’s is caused by the loss of dopamine which controls movement. I take the drug Pramipexole, a dopamine agonist that does not make dopamine but fools the brain into thinking it is dopamine. I also take levodopa which makes dopamine. Since my diagnosis, I have gone to see a neurologist every three months or so. One of the questions I’m routinely asked is; do I gamble, drink or shop excessively? It seems that both of the drugs I take have side effects of which impulsive and compulsive behavior is an issue. Continue reading Part 10- P is for Parkinson’s or Pain in the ….
To the beach tonight, I long for the salty air. The sun has completed its’ days’ work, so Helios rein in your trusted steeds; the moons dance with the clouds has just begun or is it a game of hide and seek? A storm is brewing, falling in off the gulf, rain in the distance, moving from east to west of the jetty which extends out from the coast, penetrating and dividing the waves. The lightning, a spidery web of energy, electric veins of the night sky, counting the seconds when the thunder roars, 1001, 1002… the miles it must sprint until illuminations arrival. The waves are wanting of my feet as they melt into the sand; I see a path of light on the surface of the water, guided by the moon’s reflection. It disappears, comes back into play, a lot like you, coinciding with the rhythm of the moon and clouds, the light and dark, the sacred and profane… wild heaven and all it will allow.
Some time ago whilst I was sitting in Starbucks, a woman noticed the tremor in my right hand and asked, “do you have Parkinson’s disease?” I looked at her a little surprised captured in my tremor and answered “yes.” She proceeded to ask questions of which I answered freely. Most of the questions centered on PD and the fact that she has is a distant relative who was just diagnosed.
I get this kind of attention a lot, which I don’t mind, either people ask questions or those too embarrassed to ask. However, they reveal a slight smile with a look in the eyes and you can tell they know. And rest assure, that whether you ask outright or you’re too embarrassed to ask, you have a few things in common; either you know someone with Parkinson’s or know somebody, whom you feel might have it. That someone might be you!
So the relative in question was a sister-in-law who upon hearing her diagnosed, stayed in bed for two weeks, too upset to get out of her room. And here is this woman looking at me and seeing two extreme reactions to the same diagnoses. I know in my mind I was thinking the same thing. Upon leaving, she told me she would pray for me of which I thanked her. This was probably the first seed of inspiration to write about Parkinson’s.
So the gist of my story is this: I am like these individuals and all others who know. And depending on what day it is, I can go to extremes. So my therapy is to write and share these words and just maybe this will give those with a close connection to this disease a rhyme or reason as to ‘why’ and move forward. As T.S. Eliot wrote in ‘Little Gidding’:
“We shall not cease from exploration,
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
I didn’t set out to write about Parkinson’s figuring there was enough being said and written. But the more I told my story to friends the more encouragement I received. It wasn’t enough that others have written about this disease and their relationship to it, what mattered was, my story wasn’t out there for I had a voice and an obligation to write it.
For their understanding I want to thank family and friends for being there and patience in the fact that my life had changed and I now moved a little slower. To my fellow bloggers who encouraged my creativity in the blogosphere and to Mirja who always had an unending faith in my abilities as a writer.
Thank you, JC