Thursday, December 12, 2019

Things to Avoid Saying to a Person With Parkinson's Disease

 (Written originally for The Northwest Parkinson's Foundation.)

What can I say? It’s a free country. You can declare, utter, intone or even verbalize whatever you like (almost). But if you want to spare your friend/acquaintance/loved one who has Parkinson's some silent tooth-gnashing, here are a few things to avoid saying to them.

1.) “Boo!” Those of us with Parkinson's are more easily startled than those of you without it. This is probably has to do with the autonomic nervous system, its connection to the pre-frontal fizgig and the hemispheric laterality of the whoopsy response in our lizard brain. Whatever. I just know that I am more susceptible to being startled than I was before Parkinson’s set in. So, as charming as the novelty of seeing a Parkinsperson jump may be, try not to startle them deliberately. They are anxious enough as it is.

2.) "Parkinsperson" I thought this word up myself to avoid the constant repetition of the phrase “People with Parkinson’s” or the use of the dreaded term “Parkie” when writing about Parkinson's. But “Parkinsperson” identifies the individual as primarily defined by their disease. Parkies hate that, and who can blame them? Furthermore, it’s just a plain ugly word. What was I thinking? My apologies.

3) “Parkie” Some love this word, some hate it. Those who hate it really loathe it. Rather than risk more tooth-gnashing, surely you can think up something better. (Note: “Parkie” is also an Alaska term used by indigenous people to refer to their Winter coats. There is nothing potentially or actually offensive about the use of the word in this context. Isn’t language fun?)

3.) "Hurry up!” It’s hard not to say this, I know. But slowness of movement is one of the cardinal symptoms of Parkinson’s. It more than goes with the territory, it IS the territory. The person you are urging to make haste is probably already hurrying, at least, for them. When I hurry is when I am most vulnerable to falls. So weigh your immediate desire to get going against the time a trip to the emergency room will cost you, not to mention the cost in actual money. If you find this annoying, try silently gnashing your teeth.

4.) “You’re looking good” I understand this is meant as a compliment, however, there is an unspoken thought that goes with it. That thought: you have a dread disease and should look like absolute crap. Well, give it time, and someday we’ll all look that way, In the meanwhile, consider a simple “How nice to see you.”

 5.) “If anyone can beat this disease, you can.” again, I understand this is meant well. But what are you asking of the person who is sick here? For thousands of years, millions of people have had Parkinson’s, and as far as I know, not one has “beaten” it yet. So you are asking the impossible of someone who is already struggling. Furthermore you are burdening them with the obligation not to let you down. Instead you are putting them on notice that they are somehow special and therefore duty-bound to rise like a phoenix from the ashes. Even further, what does it mean to “beat” Parkinson's? To be symptom-free forever? To live as long as you can as well as you can?  To be made whole in flesh and spirit? How do we keep score? And who is the score keeper?
To sum up, let’s construct a sentence using all our unfortunate words and phrases in one grandly offensive tongue stumble, as an example of what to avoid when chatting with a person who has this disease.  (Caution, to those of you who have Parkinson's, the following may be triggering.) Here goes…

“Boo!... Hey, you’re looking good! But you better hurry up, Parkie! If any parkinsperson can beat this disease, you can, so get going!”

If that sounds awkward to you, think how it sounds to a person with Parkinson’s.