Saturday, November 12, 2016
Saturday, November 5, 2016
So buy the T shirt. Move to Keep Moving. I hereby claim the slogan as my own. Michael Young
Thursday, January 29, 2015
I dropped out of the blogosphere a year ago and retreated into a darker, smaller place that I did not want to write about. And yet, looking back over the year of 2014, I realize it was a year of personal growth, understanding and acceptance. Wonderful and wondrous things happened in my life and in the lives of my family and friends in 2014. Why be so glum?
Simple. I crossed the point where P.D. was a nuisance, and future disability. P.D., until then, was more concept than reality. I've now gone to a place where P.D. has gained the power to make decisions for me. Mordred (see post January 21, 2013) is my constant companion and I lost the will to do battle with him. I put a wheel chair on the first and second floors of my house and I use them. Ditto the walker. ( A jazzy, sports car red, shock corded folding beauty that I found at the Goodwill. I find everything at the Goodwill.)
And yet, LIFE GOES ON! I'm still expected to pull my share of the load. I'm still expected to be parent, son, husband, friend. I'm sick, and people are blind fools. Why won't they LEAVE ME ALONE!
And why should they. They are selfish and it is not in their best interest Despite my heroic efforts to give up, be sick, fade away, I can't. There is just too much love in this world. It swirls around like dust devils, seeping under the door jambs of my hidey hovels and chase me into the alleys where I try to disappear. So now after a year, I must re-access. Self pity is a lot of work, and I am tired. I surrender to loves force.
Love does not always heal, but it does sustain. So today, I will get up and do the next thing. What ever that is. Tomorrow I'll do the next , next thing. And so on until I do the last thing. And, mercifully, I'll never know it was the last thing.
Thursday, January 30, 2014
Wednesday, January 22, 2014
Which sounds better? I don't sleep well these days due to my sickness. OR It's my new normal to sleep less than I used to. I think you get my point.
It's difficult staying upbeat and enthusiastic all day if one must use words like sickness or disability. So, DON'T. I'm convinced we are what we focus on. I'm living today as if it's the new normal.
I fear that if you start with my last post " Progression" that you, the new reader, will get the impression that we People with Parkinson's are doomed to a future of disease and decay. (well, yeah, maybe, but no use in thinking about that yet.)
Please, start at the beginning. It will make me feel better.
Friday, January 10, 2014
OK, boys and girls. This might be the time to get out of your seats, go to the lobby and buy some popcorn. What you are about to witness is the scary part of the movie. Even though you have been told that there are flying monkeys in the story, you really are not prepared for them.
I hate the flying monkeys. I hate the word progression. Moving forward, advancing. When used in a sentence with the words " Parkinson’s Disease, it implies moving forward, DOWN HILL. My symptoms will inevitably get worse. I will slow down. The world continues to spin, but I am no longer synchronized with it. Sometimes when I am in an '"off" period(when the C/L is not binding to my brain cells in sufficient quantities) I feel like a lumbering bear with hummingbirds buzzing around me. They confuse me. I can not quite gauge their trajectories.. A confused bear is an angry bear and a confused Parkinson person is an immobile person. To continue, I must have a clear path .
I have had a P.D . diagnoses for five years now, with symptoms two years before that. The disease is progressing. Progression was once a word that was detached, academic. Now, I understand the concept on the deeper level. I am losing the ability to move through space that normal people take for granted. The meds I take do not work as reliably as they did, even a year ago. Now I must consider that, when out and about, I may become trapped by my immobility.
Progression means losing independence. It’s fall now in Pennsylvania and getting cold. Once, I thought nothing of layering up, grabbing my binoculars , stuffing a Hershey bar in my side pocket and spending an afternoon hiking in the woods. That has changed. Yesterday , for example, I “went off” and stood, immobile in the alley, 100 yards from my house. I thought “ Hell, I could freeze to death out here”.
I have fear of venturing out without a companion and a backup plan. With the perspective of five years of experience, I can gauge how rapidly my physical changes have occurred. I have enough data points on my internal graph to show an advancing decline in motor skills. I don’t need to chart it on an Excel spreadsheet.
The "off" times are more frequent. Still,when the C/L is at the right concentration in my body,I am more or less normal. I feel good.I may show some dyskinesia as a side effect of the meds, but I am not bothered by it. Others can see it , but I don’t care and never have.
A clear path is also essential for writing. I see a path now . I am trying to be brave and am inspired to continue with this blog. It will be a different story . I am no longer a newly diagnosed Parkie.
Book One was the first five years. I embraced P.D. and made it my own. The fun and funny, inspirational part of my adventure, however, is drawing to a close. Now, I am going into the deep woods where the flying monkeys and the confused bear live. It will still be Michaels Parkinson's Adventure, but I’ll be stepping into the unknown. Perhaps, I will not emerge on the other side. Things are getting more serious. If I do make it through , I may not recognize myself.
This revelation about progression did not occur suddenly. It has been bubbling up into my conscious mind for at least a year now. There is always something new to cloak in denial. Progression as a reality for me, needed a big blanket. As long as I denied the progression, I had trouble writing this blog . I know that newly diagnosed people are reading what I write and I have tried to find the positive in my experience so that you too , dear reader, can have optimism and hope. Is it my obligation to shield you from the truth as I see it now? Or, shall I blaze a path for you to help you discover your own truth.
I’m not really worried. Each of us already holds onto our own version of the truth about P.D. Our cloaks of denial are always as big as they need to be. For me, I’m ready to step into the forest, risk freezing to death and learn what can. I want to say “yes” to the experience and find meaning in the adversity ahead.
There is a good chance that you too, dear reader, are scared, but also want to know. With one eye closed, and the other eye squinting, you know deep in your heart you must look.
I will continue to tell my story . Ultimately, I hope that it will be a story of acceptance, gratitude, and joy.
In the end, to live a full life , denial is not an option.
Michael Spokane 11/21/2013