Can you get used to Parkinson’s Disease?
After 20 years with a Parkinson’s diagnosis, it seems like a reasonable question. Can you get used to Parkinson’s Disease? Does the passage of time soften the blows? Does memory of your prior self fade, and are the wounds inflicted by the disease healed by time? Does the unsteadiness, the quietness of speech, the loss of fine motor skills and the host of other symptoms ever become the “new normal,” replacing the old normal?
Well, I hope not.
I hope you don’t become accustomed to falling when exercising your right to pass freely through a room or a doorway, or, heaven forbid, down the aisle of an airplane. I hope that such falls always come as a surprise, the last thing you expected. I hope you never become resigned to the freezing of gait that arises seemingly without prompt as you walk with your friends or family, requiring you to summon up the energy and focus to simply begin walking again. (Only to be overtaken by another freezing episode.) I hope you don’t take as normal your inability to sign your name legibly, or to compose a shopping list that won’t require an extensive and intensive decoding effort when you reach the store. I hope you retain your ability to stand tall and straight, un-stooped by the heavy hand of PD. I hope that the tremor in your hand never gets seen as an intrinsic part of you, just a curious peculiarity, a quirk to be thought of as part of the package of traits that make up the unique person that you are. I hope that you never become reconciled to the damage that Parkinson’s inflicts on your ability to speak clearly and coherently, without hesitation, or those awful gaps that come as you desperately attempt to fill them with either the precise word you are looking for, or another that at least will logically sustain your train of thought, instead of bringing the momentum of that train to a screeching halt. I pray you never feel that the number of pills you must take are just an everyday part of life in the early part of the twenty-first century, just something to be expected and endured, like robocalls and mosquito bites.
There is surely wisdom in Reinhold Niebuhr’s “Serenity Prayer”. It’s the one that goes “God, Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference…” But does that mean we have to accept Parkinson’s as beyond our power to change, and somehow find a way to co-exist with this most unwelcome guest? Or is one of the things you cannot change the essential unacceptability of Parkinson’s Disease? I vote for the latter. Parkinson’s Disease is a thief and a bully, and it singles out innocent people at random for abuse and ill-treatment without reason or justice. Twenty years into my diagnosis I can’t get accustomed to that, and I hope I never will.
by Peter Dunlap-Shohl
NW Parkinson’s Blogger