Monday, May 23, 2011

Life is Short

I finally watched the television show about the poor unfortunate  hoarders.   If you watch cable TV, you have probably seen it, or at least heard about it.  It is a show that lets us watch dysfunctional people who can’t throw anything away.
I have known people like this. I have worked in their homes, navigating goats trails through their possessions. The hope of the afflicted homeowner is that the carpenter’s repairs, alterations and additions will finally bring order to their chaos. I learned from experience that it will not. Any new space will soon fill with the physical manifestations of their aspirations.
I realize that the hoarders dilemma is not the inability to organize their possessions, it is their unwillingness manage their dreams. The accumulated stacks of newspapers that will never be read, the books never loaned, the perfectly good odds and ends for imaginary craft projects are all physical evidence that the hoarders dreams are too big.  They refuse to acknowledge one simple truth;  life is short.
I think this is what fascinated me about the show.  After the shock of the gross disorganization, (and the disbelief that a person would agree to be filmed and humiliated) I found sympathy for the hoarder. I realized the I share some of their  traits. My dream life is full of possibilities, all wonderful and valid. But there is not enough time to do it all.
So now I take the trip to the psychic dumpster on occasion to sort out what is truly important.
As Henry David Thoreau put it, “The price of anything is the amount of life you exchange for it.”

Tuesday, May 17, 2011

Moving for the Joy of It


I’ve stated the obvious before, move to keep moving.  I keep moving even if I’m not improving.  If  I can slow the physical decline of Parkinson’s  for yet another day, I call that success.  This notion is measured with a self-deluding sliding scale, of course.  Do I move today as well as I did yesterday?  If I can say, “you bet!”,  I’m happy.

I learned how to measure physical movement when I was in my 30’s.  I took up running  and discovered that I enjoyed it.  I timed and recorded my workouts.  With greater effort I showed improvement.  I participated in competitions, where, although I was a middle of the pack runner, I raced against my own record and won. I had fun.

Inevitably, I posted a personal best that I never reached again. I aged. I didn’t stop running. I revised my goals to fit my capabilities.  The joy of moving was reason enough to continue.

We  know we’re going to have a personal best that we’ll never achieve again.  All athletes pass their prime.  I never mourned the passing of my fastest time.  I accepted  it as the natural progression of life.

I continue to define new challenges, and strive for new personal bests. Life is a mysterious adventure.  P.D. does not change that.

Wednesday, May 11, 2011

Pharmaceutical Fulminations


Carbidopa –Levodopa 25-100 mg tabs, generic for Sinemet; two tablets, three times a day.  Pramipexole 1 mg. tabs, generic for Mirapex; one tablet, three times a day.  Amantadine; one 100 mg capsule, two times a day. Paroxetine HCL, 30 mg tablets, generic for Paxil, once a day. Clonazepam 1 mg. tab, as needed.

This list is the background noise of my life.  I have had to learn to remember to consume the above list at the proper time, in the proper dose.  I have to anticipate and  pack enough pills to last during my travels, when I am away from the mother supply.

I need to order the pharmaceuticals, calculating the lag time involved with mail order refills.  Plus, prescriptions need to be renewed on occasion, so communication with the physician is part of the matrix of complexity.

Now, add the fact that I am supposed to be proactive in evaluating the efficacy of the drugs, using Excel spreadsheets to produce graphs and charts that I can E-mail to Dr. A.  It is no wonder that I feel unproductive in my life, taking a day to do a half  a days work.

Let us not forget that all of this modern chemistry costs money; a lot of money.  I can’t count on my insurance provider to pick up the tab.  And forget about shopping around for other insurance. I’m branded with a pre-existing condition.  I keep the policy that I have and am thankful that I have it.

The need to attend  to the details of modern medicine, although time consuming and confusing, is still worth the effort.  The fact that I can enjoy a somewhat normal day, actually feel good during most of my waking hours, and be productive at some level is a marvel.   We PWP’s  are fortunate to live in a time when drug therapies are available, plus we can have optimism that new discoveries will advance our chances to live long and fulfilling lives.

Thursday, May 5, 2011

Dreaming of the Melbourne Shuffle

My guilty pleasure is surfing YouTube. There’s a fine line between taking a break and wasting time; a line I usually cross.  I may start with a legitimate purpose in mind, such as finding out what  Billy Joe threw off the Tallahassee Bridge.  (Yes, inquiring minds want to know).  So, with a few keystrokes, I can be listening to Bobbie Gentry sing “Ode to Billie Joe”... all eight versions.  Then I‘ll check out other suggested viewing options which ultimately devolve until  I’m watching people do stupid things with motorcycles. Before I know it, instead of writing a perfectly poignant post for you, Dear Reader, I have wasted away yet another morning.

I had the best of intentions  when I typed “Shuffling” into the YouTube search window. This was to be solid  PD research for the citizen scientist.  Instead, I discovered the Melbourne Shuffle.

It is a dance: fluid,yet twitchy. It looks like a cross between the Michael Jackson Moonwalk and Irish Folk dancing, performed to thumping techno music. I was mesmerized. The hook was the dozens of  posts that promised to teach me how to move like the people in the videos. It’s all there, broken down into what seems like an easy collection of movements. "Do this, then that, then do this again." I had visions of showing up at my next doctor's appointment, walking to end of the hallway during my usual  “how’s he walking now?”exam, and breaking into an “I’ll show you” Melbourne Shuffle extravaganza.  Dr. A would be so proud.

I can dream, but its not gonna happen. I have practiced. Really. The dance steps make sense, and if I could string them together with some fluidity, I might just pull it off. Unfortunately, as I concentrate on my feet, I end up with my right arm curled up and my upper body twisted, Quasimodo style.

I guess that’s my dance. Next time you're at my gym look for me. I’ll be the one putting on the Quasimodo Shuffle.

Melbourne Shuffle done right!