Thursday, January 30, 2014

Quote for Today

Wellness is not related to the condition of one's body but to one's state of mind
We become healthy when we accept our mortality and begin to live our life.

Bernie Segel

Wednesday, January 22, 2014

I'm Not Sick, I'm Experiencing a New Normal !

Whenever I think I'm being clever, I'm just a Google search away from confirming that I've not had an original thought in my life. So it is with the concept of "New Normal". It's a well established phrase that sounds cool, and I'm using it. Sue me.

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.

Are you new to Parkinson's?

If you are newly diagnosed as a Person with Parkinson's, may I suggest that you go to beginning of my blog and read chronologically. If I say so myself, I tell story of discovery that is both optimistic  and  entertaining.

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