The Mask of Parkinson’s

“I wear the mask. It does not wear me.” Man in the Iron Mask

“See to it, then, that the light within you is not darkness.” Luke 11:35

Précis: The simplest way to describe Parkinson’s is that it’s a movement disorder due to the reduction of dopamine production. Sometimes one of the more obvious places this absence of dopamine is noticed is the reduction of facial expressions (also referred to as masked facies or hypomimia). The “mask of Parkinson’s” is further described below.

Loss of facial expression: There are 43 muscles in the face, which are all mostly controlled by the seventh cranial nerve. Johann Kaspar Lavater said “…The human face is nature’s tablet, the truth is certainly written thereon.” We view the smile as a sign of friendship, happiness, and acceptance; while we view the frown as a sign of sadness or unacceptable. The Parkinson’s face is somewhat less expressive than before; somewhat more rigid than before. Many people-with-Parkinson’s also have chronic stiff necks; however, that doesn’t make us Frankenstein.

Scenario #1: You’ve played 17 holes of golf, and you approach the 18th hole to finish the round. This is a long par three with a lake between you on the tee box and the putting surface. Your three golf buddies have already safely hit their balls over the lake; you launch the ball over the water and safely onto the green (this is a big deal). Without Parkinson’s, your facial expression and your exuberance are so obvious. With Parkinson’s, your joy and exuberance are still over-flowing inwardly yet it is displayed in a more muted manner.

‘Life is a mask through which the universe expresses itself.” Frank Herbert

“You wear a mask for so long, you forget who you were beneath it.” Alan Moore

Changes in your voice: The loss of dopamine in your brain leads to reduced volume in your voice along with your voice becoming flatter/softer in tone. The same process affecting your face is happening in your voice. If you think of dopamine as a “messenger service”, the brain uses it to send orders/messages to nerves. When dopamine-producing cells die, all muscles are affected and diminish, including muscles involved in speaking, swallowing, facial motion, legs and walking, and hand/arm movements.

Scenario #2: You and your partner are attending a college basketball game; your home team is 3-points ahead of your biggest rival, and it’s near the end of the second half. Game over, your team wins, let the fun begin. Like everyone else in the arena, you are standing, jumping around, high-five’s all near you, and you are shouting (and singing) your lungs out. Such happens during great college basketball rivalry games. Without Parkinson’s, all of this is a reality, a dream come true. There is a feeling of satisfaction and there is a huge positive feeling from the game. With Parkinson’s, there is the same positive feeling of happiness but with a diminished ability to clap continuously and you’re less able to shout and sing along loudly with everybody.

Two famous masks:

“Without wearing any mask we are conscious of, we have a special face for each friend.’ Oliver Wendell Holmes

“A mask tells us more than a face.” Oscar Wilde

Consequences of the ‘Parkinson’s Mask’: The change is subtle over time. Mostly, there is a softness to your voice, your smile is not as big, and you don’t blink your eyes as much.

Subtle differences in the before/after pictures (I’m also younger in the without PD pictures):

Because I do a lot of teaching, I get a lot of teaching evaluations and critiques. Here are two comments from two medical students regarding my lecturing in Immunology (one of the medical school courses I co-direct and teach in):

“Dr. Church is a wonderful lecturer! Not only is he easy to follow during lectures as far as explaining concepts is concerned, but his dedication to his students, their questions, and their general well-being never ceases to amaze me.

“Dr. Church should take it as a huge compliment that he was able to convey enthusiasm about the topic and inspire passion in students despite his expression often being limited by Parkinson’s.”

LSVT LOUD® can certainly help boost the volume and tone of your voice. If you use it and practice, it will make a difference. My Speech Pathologists told me that we think we’re speaking at a normal volume but we’re really not. Your goal is to train your brain to really speak loud (almost shouting). You can also practice making accentuated facial motions, trying to accentuate what’s going on with your face. You can practice smiling large, and other facial exercises (try practicing your vowels). I have never had a loud voice and I’m not an overly expressive person; having Parkinson’s has softened everything. When you listen to someone speaking, you also listen with your eyes; thus, the reduction in visual cues makes it harder to understand you. To continue to get these positive comments shown above, I need to be constantly practicing on speaking louder and working on my facial exercises.

“Take the emotional temperature of those listening to you. Facial expressions, voice inflection and posture give clues to a person’s mood and attitude.” John C. Maxwell

“People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.” Elisabeth Kubler-Ross

Resist the evolving Parkinson’s mask: The worst-case scenario to what I’ve been describing is the total outward masking/blocking of your inner self and its expression. We must resist that change, we must really work hard to speak louder and to over-accentuate our facial motion to show the emotion that’s within us. Change may be subtle but change is inevitable for most of us regarding this mask. Stay vigilant. Let’s keep working on talking louder and being more expressive. The inner you is still there, it’s functioning and still wanting to get out. Keep working.

“When we can let go of what other people think and own our story, we gain access to our worthiness—the feeling that we are enough just as we are and that we are worthy of love and belonging. When we spend a lifetime trying to distance ourselves from the parts of our lives that don’t fit with who we think we’re supposed to be, we stand outside of our story and hustle for our worthiness by constantly performing, perfecting, pleasing, and proving. Our sense of worthiness—that critically important piece that gives us access to love and belonging—lives inside of our story.” Brené Brown

Cover photo credit: http://7-themes.com/6793576-free-pacific-ocean-wallpaper.html