Smiling, not Smiling

For people with Parkinson’s, every day can be Halloween since we carry our masks with us. Due to bradykinesia, our facial features are slowed down. It’s hard for non-Parkinson’s people to understand this. They just think of us as “moody” or someone who “freaks people out.” It’s a daily struggle, and it’s something we’re conscious of. I know I am.

            It’s definitely something that makes it hard to want to work with people since everyone is really “touchy” nowadays. Everyone has an opinion. We want smiles. We want our way. If we don’t get it, we cry sexism, racism, or some other –ism instead of wondering, “What else is going on here.” Granted, it’s not easy to say, “I have Parkinson’s” for everyone. There’s also not always time to get into the whole rigmarole of bradykinesia, and not everyone is into just taking the, “Oh, it’s the PD thing” explanation.

            I get it.

            But see, much of it is the PD thing, so we have to accommodate and consider our futures based on people interaction or permission to put up a huge neon sign that says, “Even though I’m not smiling, I’m happy. I do show it with grumpy face when I’m moody (as opposed to straight faced and even keel). Thank you for your consideration. I’m happy to help you.”

            However, for the person with PD, it’s all about being the man or woman in the mask. While I never thought of myself as Quasimodo or the stinky kid (I do shower and use deodorant), this is an interesting quote on it from the Michigan Parkinson’s Foundation:

The person with Parkinson's disease doesn't project an approachable persona. The loss of some of the control of the face and head muscles creates a stare-like feature that is referred to as the "Parkinson Mask." The eyes don't blink as much; the smile, if there is one, appears forced or is of a short duration. The stiff neck and shoulders remind us of Frankenstein. There may be uncontrolled movements that vary from excessive to a Zombie-like absence. The hunched back is a reminder of the bell ringer from Notre Dame. There can be a funny gait, drooling, an unkempt appearance, and - heaven forbid - a body odor! This all adds up to an approachability that is uncomfortable, if not repelling.

If contact is eventually made, further dissonance is encountered. The voice of a Parkinson Person is often raspy and lacks volume that is not perceived by its owner. Any exchange of conversation is followed by a request to repeat what he has just spoken. Sometimes, no attempt to hear is resorted to. As the Parkinson one speaks, there is a tendency to run the words together, especially in a telephone conversation.

If a request is made to help communication by writing down the message or idea, then another Parkinson hardship is on tap: the lack of coordination causes handwriting that is barely legible.

…Yawning and loss of attention help to pile on the discord.

Fluctuation of moods can add to disruptions. Within the short span of time that medication wears down, a swing in feelings or any sense of well-being can change into a "joyless cranky wanting to withdraw" mood. This inconsistency adds a wariness to the relationship.

The focus in this presentation is not meant to detract from the lofty qualities that are companion to warm hearted people and their care givers. It is meant to raise the curtain on the predominant struggle that too often is buried under the "chin-up" rallying cry that can misdirect some well-intended cheerfulness.

            And so I sit here on December 1, 2017, exactly 10 years after my first date with my wife, thankful that she gets it. 

            I’m thankful for co-workers with PD-affected relatives who get that they need to see it in my eyes (though even that can be off) I’m thankful for all those people who still like me despite my PD issues, since they know I still care. I’m hopeful for the future, but I’m also wondering why so many people are too superficial to ask, “Why?” and who would rather think I just dislike them or am a moody grump.

            I guess I should start with myself and try to understand other people’s moodiness before judging, too. For now, I’m going to move me to the good places and push the haters aside. I've had enough of them for now.

            Life is for living to its fullest extent… even if we aren’t always smiling on the outside (because Parkinson's literally robs us of our ability to do that).