Understanding How Parkinson's Feels
Last updated: February 2022
Many people who mingle with Parkinson’s wonder how it feels. Here, I’d like to take you on a trip from top to bottom to give you my feels.
The challenges of movement
My toes curl and hurt when I’m sitting at a computer typing. I’m literally sore from being motionless. My fingers are permanently curled. I call it the claw. Also, having rusty fingers when I want to type is awful. It’s hard to get repetitive back and forth motion like brushing teeth going without frequent pauses.
Parkinson’s feels like I’m always finding a new way to compensate how I walk like a stiff legged Frankenstein. The rigidity makes us feel like a jacked up action figure, who needs a massage regularly. Each of my ankles feels twisted. My left ankle hurts worse. Contemplating balance and holding onto handrails is a real thing.
Tremors, in and of themselves, don’t hurt. Sometimes, they’re excessive, and this leaves my arms feeling like I was pushing weight in the gym. If only. Tremoring increases with excitement, worry, or anger. There is also the explosive anxiety bomb of tears, nausea, and self-loathing.
When standing at a urinal, body shaking, stumbling through opening a zipper, I'm wondering if someone is going to come in and have a talk with the pervert. It's really a concern.
Then, there is that moment when you pull a rib muscle you never knew you had. Not being able to smell our own flatulence isn’t a bad thing, but losing the smell of cinnamon rolls is. And finally, constipation: Wondering if today is multi-poop day. You asked.
Sleep and fatigue
There’s no such thing as relaxing Parkinson’s sleep. No amount of time slept is better than another time. I’m always exhausted. Having an "object at rest" body when I want to do anything productive is awful. Having to choose naps over fun sucks.
Sometimes you get a charley horse in your sleep. And you know that punching, kicking, and talking during sleep means that you are sleeping alone.
Impact on relationships and communication
Sometimes when I talk, my tongue twists and tremors, so I slur my words. There's that whole lack of facial expression thing. And having an angry outburst is likely with dopamine fluctuations.
Nothing spoils intimacy quite like constantly feeling the need to "piddle," crazy leg cramps, and tremoring excitement leg.
In my teaching days, I didn't call on soft talkers in the back of the room becuase I couldn't hear them. I didn't want to ask them to repeat themselves. I'm sorry. It's not you; it's me.
It was also horrible to hear multiple conversations at once. My Parkinson’s would create a cacophony in my head. To avoid this, I gave many angry requests for one conversation at a time. Now I know why it was aggravating. I'm sorry.
My goals and the future
Thinking about a time when I’m no longer working feels like I’m a horse going to the pasture until I go to the glue factory. Getting old young means nothing we do feels, looks, or works like it once did.
Having one final trip to a favorite place and breathing in the moment is more relaxing of a feeling than you would think. It definitely feels better than not going
Losing places and actions from the bucket list can suck unless I replace them with solid options. Old hobbies are equal to new hobbies (if we accept their potential).
Yep ... Parkinson’s is the gift that keeps giving!
Do you experience issues with spatial awareness?