For anyone with Parkinson’s:
I am witnessing, and have experienced too much _additional_ suffering, because there is a general lack of awareness. I don’t expect to change that and I’m not here to “save the day!” but I’m fascinated by denial, even from metal health professionals. Astounding… the complete lack of awareness and further damage incurred by peanut galleries who have no direct experience.
I’ve had to made drastic changes in my lifestyle and communications. This includes a much smaller circle of those I’m regularly in contact with, and a lighter schedule.
This is not a choice.
People you know (and strangers too) may mistake your changes and unusual habits for bad choices, without realizing your experience is drastically different than theirs. You are slowly losing everything in a cruel and unrelenting way, but they only see you shake and call you a martyr. It’s the cognitive/non-motor symptoms of PD that are destroying my sense of well-being, not the chronic physical pain, or tremors, or any other crappy motor symptoms.
Most of us don’t know what to do in absence of experience, but true empathy and compassion are invaluable, and rare. My circle includes beings who put their empathy and compassion to use. Remember to pay attention to the behaviors of those who preach and promote, but do not offer much of, this verb we call compassion.
Under no circumstance should anyone who does not specialize in, or have a keen understanding of Parkinson’s be allowed to touch you.
I offer these reminders after close observation, research, and ridiculously unnecessary and painful personal experience- to be filed under things I wish I had known. Though ignorance can be willful or unintentional, both types damage people in close quarters- often at the worst possible times.
This idea can be expanded to intimate relationships. This is so important:
A normal template and set of expectations will NOT fit the behavior, routine, habits or activities of a PwP. Your loved ones will be disappointed and confounded, if they expect you to act and react just like everyone else or presume you are just being difficult, (or slow, or disinterested.)
It is not easy to be around Parkinson’s, this rude and uninvited guest tagging along, messing up plans and blurring intentions.
If an intimate with high expectations starts blaming or shaming you for symptoms and side effects they assume you can control, I suggest you back away.
Likewise, if you have to explain the unpredictability of this health issue repeatedly, and are treated with suspicion instead of support, just leave. It won’t get any better.
To add to the confusion, various social circles who choose to scrutinize without information will only keep the negative feedback loop going. What gets projected upon PwP can add an aspect of persecution to the overwhelming challenges. Not because anyone is being meanspirited, but they fail to acknowledge the iceberg effect of this disease.
When a relatively healthy friend says they’re exhausted, it’s a little different. Or if I say, “I’m not OK,” it probably means that I’m locked up and cannot walk or function, even in the most basic ways.
I used to take these things for granted. Before dx, upon waking I knew I’d be able to get out of bed and get going quickly. Now? The bod says, “Nope, not today!” Some days I’m gifted with movement and clarity- and on those days you might catch me singing or dancing, just because I can.
I’m no martyr. I’m a bada$$ with wings, and an infinite heart not everyone can (or should) see. Right now I’m just exhausted.
We are all doing what we can, with the resources available to us each moment, and it would benefit all to cut ourselves, and everyone, a bit of slack.
Thank you for reading. We all want more life.