Have you ever seen that experiment of a mother looking at her a few months old baby?The baby sits in a baby chair, the mother sits opposite the child, very close and looks sweetly, softly, motherly and smilingly at her child. The child smiles back happily, wiggles its hands and feet and almost wriggles out of the chair with joy. Then the mother turns around for a moment. When she looks at her baby again, she keeps her face fixed and impassive. She doesn’t laugh. The child falls silent, is startled and starts screaming. Total despair in the child. Contact with the mother has been broken. She has become unreachable. World collapses.

I can relate to that. It’s a Parkinson’s symptom too. Mask face. Horrible word. I think it is one of the worst symptoms of Parkinson’s. It was one of the first things that, looking back, puzzled me the most. I had long noticed something about people’s reactions in 1-on-1 conversations. Something wasn’t right. They looked at my face and eyes just a tad too long because they missed something. They missed me. I missed me too.

Mask face. This means that the muscles in my face no longer correspond sufficiently with my feelings, with the message I want to convey or with the purpose of the interaction I have with someone. It is a result of ‘Hypokinesia of the facial muscles’. An unpleasant lack of movement of the facial muscles. Slowly but surely your facial expression, the expression of your identity, disappears. Your face is often tense and impassive. In photos I see that my eyes sometimes look fixedly into the world, weird even. Yet again, Parkinson’s breaks the automatic connection between brain and muscles, including eye muscles. Without even knowing it, I blink too little.

When you talk to me, you see someone in front of you who barely smiles, barely moves her eyebrows, blinks very little, and barely moves her head. You might just think that I’m not interested in what you’re telling me. I see you searching my face. I see the confusion. I have that myself too. I see that at the end of a question or comment, you linger with your eyes on my face for just a little too long, looking for a sign of life. Anyone home?

I think that’s bad. I try to compensate for it with my voice, or with some kind of unnatural head nod or plastic smile. But I feel like it’s not working. It’s not coming across. I don’t know what that means for my contact with others. I also don’t know if anyone else knows that something is missing and what it is. It cannot be measured.

I often have a moment of surprise myself, when that gray disheveled head with blue eyes and wrinkles stares at me from the mirror. I happen to know that it is me and I know what I am thinking and feeling at that moment, but my face doesn’t show anything. 

You know what’s also really odd? If you are talking to someone, without having a mask face, your facial expression is in line with your feelings. If you have a mask face, you know you are losing control over your facial expression – and you know it. I know that I am talking from behind a mask. So not only my conversation partner has lost me, I also lost me. I am aware of that, but someone I am talking to, may not be aware of what’s missing. May be now you are, after reading this blog.