Saturday, June 12, 2010

Parkinson's Disease Means Constant Calibration.

My right arm has been worse these days. Whenever I straighten my arm, pain shoots up from my seemingly knotted forearm muscles, through my elbow to my shoulder, striking home just inside my shoulder blade with the same affect as a lightning bolt. This occurs whenever I try to lift even light objects. A towel from the rack to dry off after my morning shower. A binder from the bookshelf over the credenza. Lifting up PJ my grandson as he raises his arms for a hug. As a result of these limited daily feats of strength my arm muscles jam and screech to a halt. It is like when in Typing 9 I would "accidentally" press a handful of typewriter keys at once, requiring that I reach in and pry the letters from their jumbled collision with each other so that I could continue with the speed exercise.

As a result I find myself pleading with my booked up physiotherapist to fit me in more often. I promise him that I will increase my contribution to his retirement savings plan, or his next vacation to Italy. He tells me that this muscle-twitching mayhem is my body's way of reacting to the endless Morris Code-like mixed up messages from the brain to my muscles. The tremor, he says, is the muscles’ confusion in trying frantically to discern what the brain is shouting: “Stop! No, go! Stop! Go!” No wonder the dopamine cells lead a rebellion and, like lemmings, heedlessly run over some cognitive cliff, falling to their deaths. My physio kneads my aching arm like noncompliant clay. Then he applies ultrasound. And finally, he resorts to shock therapy (low voltage, but my right ring finger still involuntarily curls into my hand as if to hide there until the voltage goes away).
How do I measure the speed of Parkinson’s progression? How fast am I getting worse? When will I lose the ability to function nearly normally? Are the storm troopers laying siege to my tired body that so often seems at risk of being toppled? What is normal? How do I calibrate this body to keep track of the degeneration happening?
Wikipedia, the seeming authority on all things sublime or substantial, says, "Calibration is a comparison between measurements - one of known magnitude or correctness made or set with one device and another measurement made in as similar a way as possible with a second device. The device with the known or assigned correctness [our once-upon-a-time normal body and brain] is called the standard. The second device is the unit under test [our PD bodies], test instrument, or any of several other names for the device being calibrated."
When it comes to PD and the people with Parkinson’s (PWP), we are forced to acknowledge the idea of the new normal. We must recalibrate our thinking to find out our new normal and live accordingly. Some PWP find their once strong voice softening and slurring, while others find it hard to move, or sometimes stop moving. Sometimes there is depression and other times distonia. What is the standard against which to calibrate the “unit under test”? What is normal? Or is it as one of my friends says, “Normal is just a setting on a dryer.”
Right now it is the constant ache of my right arm that I need to recalibrate and forget the standard set by my pre-PD self. I need to redefine “normal” for my arm and its ability, at least for now. And keep doing so lest I become defined by the progression of this unrelenting disease. But, given that we are all aging, perhaps each person needs to recalibrate their own definitions for what is “normal”.

1 comment:

  1. Wow, very eye opening for me, a non-PD. At 62 I do get stiff after pickleball, and after a long 9 hr car trip last year, and a week of carrying a heavy purse on my shoulder, I suffered a tremendous back problem for 2 weeks, but nothing like what you are describing. Thanks for the clear description of what you are facing. Prayers being sent.