Although this story is about parents of children with disabilities, the sentiment could also apply to people with Parkinson’s and their caretakers.
Needed: New Parkinson’s Vocabulary
Friday February 26, 2016
One of the less noticed challenges of Parkinson’s Disease is mastering the arcane vocabulary that describes the particulars of the disorder. If we want to speak clearly with our doctors and others about what ails us, we have to use strange words like “dyskinesia,” “festination,” “dystonia,” and “bradyphrenia.” Words that are fun to say on their own, but even more fun to rattle off as part of a sentence. “In spite of severe dystonia, she managed to festinate across the room.”
I like showing off my vocabulary as, much as the next person, (ok- I like it even more than the next person) but why do the doctors get to have all the fun making up the words? Plus, there are many word-worthy phenomena related to PD that they have overlooked! Who controls language controls how we think about about whatever it is we are talking about. Time for a little patient empowerment.
With that in mind, I offer some new PD words for us to consider adding to the current store.
“Pinballing” this one was coined by my wife to describe the tendency I and other people with PD have to walk erratically, knocking into shelves, signposts, and one another as we lurch through life.
“Bladderdash” adapted from the free-wheeling speech of Alaska Rep. Don Young, describes the desperate process of finding a bathroom, frantically fumbling to unbutton and unzip your pants, and whipping down your underwear in time (you hope) to empty your urgent bladder.
A “Murmur” of PD patients. A collective noun for a bunch of people with PD.
“Parkanoia” the feeling that people are covertly observing your PD symptoms. And judging you for them.
“No Parking Area” A place or circumstance where you feel uncomfortable exhibiting Parkinson’s symptoms, like in a restaurant, on a plane, in a park, at school, in church, at the grocery store, in a barber shop, on the subway, at a movie, attending a concert, at work, in the gym, at the library, buying shoes, on a date, at the pool, in court, at the ball game, in a bar, at a museum, with your neurologist, etc… etc… etc…
“Depillitated” Caught without access to your pills when you need them.
“Repillitated” To have access to your pills restored.
“Ghost Dose” Skipping a pill by accident, then grinding to a halt.
“Parkinstoned” To appear to be drunk or high due to PD symptoms such as lurching, falling, and slurred speech.
“Dopameanie” A perfectly nice person with Parkinson’s Disease who is mistaken for an anti-social jerk because they don’t smile due to facial muscle freezing.
“Parkinspotting” The habit of mentally diagnosing random strangers who lack arm-swing, have soft, hoarse voices, and/or walk slowly, but are clueless about the tell-tale symptoms of PD they are exhibiting.
Think how much easier these new words will make life. When someone asks what you did today you can say “I went to the mall to do a little Parkinspotting, and suddenly realized I had ghost-dosed my last pill. Wouldn’t you know, I was depillitated, I’d left them on the nightstand at home. Naturally parkanoia kicked in, and on top of that, I had to bladderdash to the restroom. Of course, by then I was totally parkinstoned and pin-balling all over the place. Security eventually threw me out, but I’ve been repillitated, and I’m fine now., except for a few bruises.”
See how easy and fun that is? If you have any custom-made PD words you think others would find helpful, don’t be stingy, please share them via the comments field below!
Rob Mermin, founder of Circus Smirkus, trained with legendary mime Marcel Marceau before embarking on a 40-year career in the theater and circus world. He will talk about how he adapts basic pantomime and circus techniques to help people with Parkinson’s cope with movement limitations. Mime techniques include visualization, body language, nonverbal communication, articulation of gesture, and creative use of imagery and space. Mime is a valuable method to enhance perception of one’s immediate movement problem, visualize a better result, and overcome the limitation through focused action. Come and put your Mime Over Matter!
Premiere Performance by the PD Players directed by Rob Mermin: The Parkinson’s Performance Troupe in “Mime Over Matter!” At the Unadilla Theater in E. Calais, Vermont – June 17, 2017
Read more from the New York Times
How to Be Happy https://nyti.ms/2hAjn5H
Mitch Faile was diagnosed with Parkinson’s Disease at an early age. But that didn’t stop him from the pursuit of his dreams and helping to bring worldwide awareness to this life changing affliction.