Monday, January 10, 2011
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Living With Parkinson's Disease
By Alan D Busch
In the first in a series of essays, Chicago writer Alan D. Busch examines the nature of the relationship between his Jewish faith and Parkinson's Disease with which he has lived now for eleven years.
Living With Parkinson's Disease (A Jew of Faith Explores The Presence of Parkinson's in His Life)
A Series by Alan D. Busch
Living with Parkinson's Disease is like taking a ride on a pendulum but with two caveats: first, once you're on you can't get off unless you fall off and secondly, while one pendulous swing takes you back to your familiar past the other brings you closer to an uncertain future that begins to look more like today with each morning's sunrise.
A progressively worsening disease over time, I admit how wrong I was years ago shortly after my doctor diagnosed my Parkinson's to persist in the folly of denial, trying to fool myself and others that mine was a mild case and would eventually "max out" upon reaching a certain plateau and progress no further.
Well, it never happened and won't.
The simple truth of the matter is it's all uphill from here on and at an ever increasing angle of incline. In everyday terms, I feel good less often more frequently.
Now don't get me wrong. I do have good days when I feel like a "million bucks". I am neither adopting the "chicken little" approach nor any longer deluding myself that Parkinson's will not continue to play an important role in my life.
I seek nobody's pity, but I do want folks to pay attention to my message: there is no weapon more formidable in our psycho-spiritual arsenal than the alliance between old fashioned stubbornness and the power of prayer and devotion.
On the other hand, the "Parkinsonian" challenges I face every day have strengthened my resolve to live my life as best I can. I learned this approach from my late son Ben Z'L and his grandfather, my dad, Dr. Albert I. Busch, ZT'L both of whom doggedly fought off disease and disability.
As with diabetes management, given proper maintenance and lifestyle, Parkinson’s needn't prevent me from leading a relatively full life, but I ask readers to remember that the key to living well with Parkinson's Disease, as with other afflictions, is to live life purposefully.
The fact my body is not functioning properly as it did for so long is, indeed, lamentable, but that fact is never sufficient reason to throw in the towel.
Adopting a vacuous approach, the absence of belief and trust in G-d and the power of prayer or a simple negative approach of feeling sorry for myself would only hasten my demise, leaving me without the support of community, alone and lonely.
Did you ever have a lemonade stand when you were a kid? Do you remember what the old expression advises if you're ever handed lemons? Well, what are you waiting for? Get out there and set an example, become an inspiration to others, be able to say at the end of day: "I've changed a lot of lives for the better."
Physical strength is as fleeting as youth itself, especially if unwedded to "the spirituality of purposefulness". It simply is not enough to lift weights; a better use of your time would be to show folks who need help how to lift the weight of their affliction from their shoulders.
First though, I think it important to understand what we're dealing with here, of how it feels to pendulate from one extreme to the other while navigating the sometimes perilous waters of Parkinson's Disease.
Follow these instructions. And yes, you may and should try this at home. Okay, are you ready?
Step 1: Place an empty shoe box on the table in front of you. (If you haven't a shoe box, any box of similar size will do.) Position it on the table within arms’ reach so that you’ll be able to pick it up when I instruct you to do so.
Step 2: Place your hands in your pockets and do not remove them until I tell you, okay? Now, ready for the third step?
Step 3: Pick up the box. Uh uh, no, no, put your hands back in your pockets. Okay, try it again. Pick up the box.
Step 4: I see you're having some difficulty. Once again. On the count of three ...1, 2, 3 pick up the box.
Step 5: Are you alright? That wasn’t too bad, was it? Oh, you can remove your hands from your pockets.
You now have a "hands on" slightly hyperbolized understanding of what PD often feels like to me. Equally important is the awareness that symptomology varies among different PD sufferers. On the other hand, we do have some overlapping of disabilities and medications, but far more interesting is Parkinson's sufferers tend to look alike when our medication levels are low.
It’s the funniest thing. I’ve two friends who have Parkinson's who bear no resemblance to me whatsoever. Yet there are times when we do look alike. We shuffle instead of walk, our speech is slurred and we’re unable to raise the volume of our voices. Our posture is stiff and our faces are frozen as if to say: "Please don't look at me when I'm like this."
Waiting for medications to kick in can be frustrating. The waiting at times seems interminable. I view it differently by remembering how grateful I'll feel when my gait normalizes and my hands work again along with many other benefits.
You see? Good things do come to those who wait.
G-d grants each of us a finite number of days and a gift box of our unique strengths, weaknesses, talents, deficiencies and last but not least ... free will. What we do with the contents of our gift boxes is another matter but, as you probably are aware, so much depends upon how each of us uses his free will.
Remember that the next time life makes you grumpy. Take a look at the next fellow's situation. Now reevaluate your own and repeat after me: "Azayhu ashir?" (Who is rich?) "Hasameach b'chelko." (He who is happy with his lot.)*
*Chapter 4, Pirkei Avos, (Ethics of Our Fathers)
Alan D. Busch