Earlier this fall, my parents came to visit me in Sun Valley, Idaho. During their visit, we had some of my new friends over for dinner. These friends had never met my parents, and they also had never met a person living with Parkinson’s.
Thanks to my recent work with the Davis Phinney Foundation, I’ve come to understand that it is important to be able to talk about the different sides of Parkinson’s with those close to you. With this in mind, I realized that the main thing I needed to tell my friends before dinner was that one of the more notable symptoms of my dad’s Parkinson’s is facial masking.
My dad has an amazing smile, makes goofy faces and gets that sparkle in his eye when he talks about something he’s passionate about. While those things haven’t disappeared with years of Parkinson’s, they unfortunately can be subdued. Particularly when he is tired, his face can appear to be “masked.”
The Effects of Facial Masking
My dad’s face, like many people with Parkinson’s who experience facial masking, is less expressive and more neutral than one would expect, given the content of his conversation.
Facial masking causes a loss of facial expressivity. The muscles of the face lose muscle tone, leading to a seemingly blank expression.
For people who don’t know facial masking, the blank expression can be misconstrued as a lack of interest, displeasure, low sociability or low cognition. We’re accustomed to a person’s face shifting and changing regularly with the conversation. With a masked face, there is often slowness and stillness in the muscles of the face.
The primary thing I notice is less blinking and less reaction, positive or negative. However, when someone with a masked face is passionate about a story or topic, you can often see the most genuine and beautiful smile!
Even though I know what facial masking looks like, having a conversation with a person with facial masking can feel confusing. We expect facial responses in conversation. A simple smile, nod, eyebrow raise or crinkle of the eyes makes the person who is talking feel heard. With facial masking, these small movements are not so simple.
It is easy to take for granted our ability to subtly communicate through our face and movements. It can be challenging to gauge how someone should react to our own facial expressions and stories. We may disregard someone with facial masking because their facial expressions, or lack thereof, go against our social expectations. Also, it can be difficult to trust verbal communication when the facial expression doesn’t match the sentiment.
From my dad’s point of view, I imagine it is incredibly frustrating to not be able to effortlessly express himself.
Listen to Kelsey’s Podcast
I wanted to know more about the implications of facial masking and the importance of facial expressions in social interactions, so that we can all better understand how to respond. I interviewed Professor Linda Tickle-Degnen, Director of the Health Quality of Life Lab at Tufts University. Listen to my podcast to hear about her research on the effects of facial masking, what it is and how it impacts how people are perceived by healthcare professionals as well as their own care partners.
Click to listen to the podcast below
Check out the second podcast
Dr. Tickle-Degnen had a lot of interesting information to share, so part two of my interview focuses on her current research along with ideas and tactics for people who experience facial masking.
Read More Research on the Effects of Facial Masking
Kelsey Phinney’s dad, Davis Phinney, was diagnosed with Parkinson’s when she was five years old and she has been interested in learning more about the brain and ways to help people living with Parkinson’s ever since. Kelsey graduated from Middlebury College in May of 2016 with a degree in neuroscience and is currently cross country skiing professionally in Sun Valley, Idaho. Learn more about Kelsey at www.kelseyphinney.com.