Parkinson’s wants control of us.
That’s a great lesson I first encountered reading Thomas Graboys’ magnificent autobiography of his inner life with Parkinson’s and Lewy Body Dementia, “Life in the Balance.”
Bowels, bladder, equilibrium, balance,sleep,mood, memory, energy, intimacy.
Parkinson’s demands control of all we are and value.
Not just the Parkinson’s person is in this struggle. So are loved ones in countless ways.
The care partner might ask:
How do I engage this person who is different than before?
What about heir new mobility limitations? Their inwardness or outwardness? Their emotional disengagement? Their discomfort with showing their symptoms in public?
Their masked face? Their difficulty finding words to describe what’s happening to them? Their frustration with new limitations?
Their slowness? Their indecision? Their memory lapses? Their mood swings.? Their unpredictability in multiple ways.?
The Parkinson’s person is similarly conflicted:
How do I describe the life taken from me?
How do I adjust to a condition weakening my well-being?
How do I find common ground with my intimates who want the old me back?
What’s the new contract with them and can I meet it?
How do I live with daily changes in my condition–good days/bad days? What about on/off times with my meds?
Fighting for control, everyday and always.
Our greatest challenge.