The Misunderstood Mask of Parkinson's

I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s.

No matter how hard I try to smile and look pleasant, my expressionless Parkinson’s mask persists. Sure I can smile when someone is taking my picture, but it’s too much multi-tasking to remember to smile all day.

My dead-pan Parkinson’s face and stare are frequently misinterpreted. I have been accused of being angry when happy, sad when gleeful and bored when passionate. People think I’m in chronic bad mood with “that frown on your face.”

Normal people just don’t get it. But Peter Dunlap-Shohl does get it. A cartoonist with Parkinson’s, Peter’s blog, Off and On, describes living with Parkinson’s Disease in Anchorage, Alaska. Peter generously granted me permission to post the following article and cartoon from his blog. You can enjoy more of his postings at: http://offandonakpdrag.blogspot.com

The Mask

Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008

Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.

With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.

Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(

Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.

Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.

The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|

 

Related Story:

The Frozen Mask of Parkinson's at:

http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.html

 

 

 

Comments

[parkinson illness]

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

[Larry Callaway]

I have been working with PD patients for quite some time now. The top 5 things that I have heard from my patients at the specific chiropractic center are
1) They wish they could smile more often
2) They wish obstacles (chairs, tables etc) did not slow them down
3) They wish their voice was not hoarse
4) Wish they could sleep more
5) With they could shake hands when the wanted to
I would imagine that these are universal. I like your blog because it puts humor into the truth.
Thanks for a great blog.
Larry Callaway

[supra shoes]

Your blog is very nice & informative. I always appreciate your work. Thanks to the sharing.I am so glad to hear that you are settling in and enjoying your new surroundings. I love Arizona!

[Hypnotherapy London]

Very informative. Thank you for sharing, it is really good to read such an intreasting article on it all.

[Susan E. Beaulieu]

Having read your comments concerning the Parkinson's Mask and viewed the article and cartoon by Peter Dunlap-Shohi, I am beginning to realize how far back in time the onset of my Parkinsons goes. I am seeing your blog for the first time and I'm so happy to have found it. I look forward to taking full advantage of your website!