This is directly from the book:
LESSON 11: IS THERE SOMEBODY IN THERE?
In Parkinson's disease, masking can develop as the progressive loss of motor control extends to the facial muscles as it does to other parts of the body. Masked faces can complicate an already difficult situation, alienating acquaintances who may be put off or disturbed by the apparent lack of emotional response.
-Patrick McNamara, "Facial Masking in Parkinson's Disease"
I took my husband to see a one-man comedy show. We were given seats in the front row of the small theater, because they were the only ones accessible to someone in a wheelchair. The comedian was pretty funny, but also a little high-strung and very aware of his audience, particularly those in the front row. At one point, he knelt down to my husband and asked, "Are you OK? You're not laughing." He quickly made another joke, and the moment passed. Had he been any more obnoxious, I would have said, "My husband has Parkinson's." That would have killed his act.
Most people think Parkinson's means tremors. They have no idea of the whole conglomeration of symptoms, both physical and mental, that result from PD. And, of course, Parkinson's affects each person differently. But for many, if not most, Parkinson's significantly impacts facial expression, speech, and body language. Facial masking means that you can't rely on what a Parkinson's patient looks like to know whether they are interested, happy, bored, depressed, paying attention, or out to lunch. Speech becomes quieter and harder to understand. PD patients may look like they're sleeping (open-mouthed, drooling, eyes closed) or the may just sit staring into space, seemingly oblivious to everything going on around them, when in reality their minds are fully functional, but their body language is all wrong.
This makes things harder all around. Do you ignore your spouse because they seem to be ignoring you? Do they then feel ignored and slighted becuase in their own minds they are alert and eager for your attention? Researchers have found that the facial masking caused by Parkinson's lends observers- including physicians- to see patients as more depressed, less sociable, and less cognitively competent then they really are. Flat affect, coupled with the negative impressions, leads people to avoid a person with Parkinson's. Toss in some apathy - another common Parkinson's trait- and you have a recipe for unhappiness.
Is my husband unaware that the reason I keep asking, "Are you alright?" and "Is something the matter?" is that he looks so miserable? Sherri Woodbridge, who has Parkinson's says "Believe me, a person with Parkinson's is aware of their lack of expression." So what is the Parkinson's spouse to do? Matt Townsend, a speaking coach and blogger, offers some insightful and practical suggestions for communicating with people who demonstrate flat affect. First of all, he notes that "when we're not getting feedback from others, we tend to take it personally," so the very first step is "Don't personalizes their indifference to be a reflection of you. Their lack of affect is no more your fault than your mother's love of strawberry ice cream is because of you." He reminds us that "everything isn't always about you" and that people are different, so just accept them as they are."
LESSON LEARNED
One of the least well-known Parkinson's symptoms is facial masking, leading people to significantly misread the emotional states of people with Parkinson's, mistaking their frozen face as depression, disinterest, or distress.
HOW TO COPE
- Once you understand that the forty-three muscles of the face are as affected by Parkinson's as other muscles, you have to revise the way you judge your spouse's emotional state. The best way to do so: absent smiles, winks, eyebrow motions, etc. is to ask. And rather than saying are you sad/mad/miserable" or "Are you depressed?", just ask "How are you feeling?"
- Because friends, strangers, and even doctors and other health professionals, tend to read people's moods and disposition by their faces, it is important to tell them discretely that your spouse's face may not be a good indicator of what they are feeling.
Russ' face has always been filled with expression. I think that's why, with facial masking now a part of our lives, I get a bit melancholy when I see young, healthy pictures of him float across my computer screen. We all rely on facial cues when we are talking to people and when we don't get feedback, the interaction can become uncomfortable or difficult.
But take heart and remember behind the mask is a loved and loving person!