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
Monday, September 30, 2013
I don’t subscribe to cable TV, nor do I own an antenna. A lonely CRT television vintage 1990 sits in our parlor. Occasionally it gets to process some electricity when Martha plays her yoga DVD’s. “I’m warming up the tubes!” she’ll call, hoping that I might join her as she stretches and contorts. (Smile dear reader, you remember waiting for the warm glow of vacuum tubes to bring your black and white television to life.)
So, I will be at my son’s apartment in front of his television at precisely 9 pm this Thursday night to watch Michael J launch his new comedy show.
MJF has done more than his share to raise awareness of the P. D . epidemic. His ability to raise money for research is phenomenal. Parkinson’s Disease needs a poster icon and MJF fills the role unselfishly.
I do , however, wonder if weeks of parky jokes and self depreciating humor will take the edge off explaining how really debilitating P.D. is? After all, Michael J Fox has P.D. . He has a TV show, how bad can P.D. really be?
Ask that question at a P.D. support group and you will find out. There is a lot of suffering out there, both for the patient and the caregiver. That cannot translate to a weekly TV sitcom.
I make no judgments. I will wait patiently for Thursday evening to arrive. I hope to laugh and be entertained for an hour. I just need to be careful that I don’t steal any of his jokes.
Tune in! More later….
More now. I do 't know why I worry. I watched the show and the pilot show. A few parky jokes.
Likable characters. MJF is still adorable. As sitcoms go, I didn't find it that funny or controversial. I have not watched many sitcoms since Cheers was on television. I don't know how to judge it.
It reminds me why I don't watch TV anymore. I've got too much to do and a short time to do it. ( Thank you Smokey and the Bandit, I hear Jerry Reed singing now. )
So you go MJFox! Keep raising that money and I'll keep signing up for your clinical trials.
Friday, June 7, 2013
The 800cc Suzuki cruiser motorcycle had to go. I made the decision when, after being out on a ride for way too long, I stiffened up and scared myself. I had my fun and made my point.
I was no longer “one with the machine”. I was not in control. I posted it on Craigslist as soon as I made it home.
The gentleman who answered the ad was named Raj. He told me he wanted to buy my motorcycle because he was “born to be wild.” I liked Raj.
After some negotiation, we settled on a price and drove to the title agency to change ownership. His wife would follow him home in the car.
“ First, I must get my safety gear from the trunk of the car,” he told me. “You know, a helmet is like a wife, you need her, but don’t necessarily like her.”
Happy trails Raj. You are a funny man.
Thursday, June 6, 2013
I just posted my promised part two of my clinical trial adventure. Somehow, three months have passed since I posted part one. I’ve been busy. but really, what do I do all day?
I keep a simple diary. Looking back I know that I do things. The important stuff gets done. The list of "want to dos", however, piles up.
What's my reaction? I commit to simplifying the things I own and do. I sold the motorcycle. Sorry. We are cleaning out the house in anticipation of moving to a smaller, flatter one.
I know where this disease is going. I am scouting ahead, preparing for when it comes around the corner. I’m retreating to a place where I can be firmly grounded to do battle on MY terms.
"Bring it on!"