Between 60 and 90% of human communication is non-verbal, and is based on facial expression, tone of voice, and posture. All of these are compromised in the case of Parkinson’s.
It is very common for people with Parkinson’s, (including me), to develop a sort of “mask-like” facial expression, caused by rigidity or perhaps lack of tone in the facial muscles. This can cause people (me!) to look disinterested, bored or angry, even when I'm not feeling that way at all. This can be a big problem in social situations.
Although I can explain this phenomenon to people it’s a hard thing to remember, since so much of our human reaction to facial expression and tone of voice takes place completely unconsciously. Everyone is communicating non-verbally, pretty much all the time. So it’s hard for other people, even if they know what’s going on, not to be unconsciously influenced by my lack of expression. A blogger from the Davis Phinney Foundation wrote: “It can be difficult to trust verbal communication when the facial expression doesn’t match the sentiment.” This sounds right to me.
The first time I saw real facial masking (I was walking around at a conference) I was instantly on the defensive. I was sure that the man I was looking at was hostile. I suddenly realized what I was seeing, and swore I would never make that mistake again. But I have made the same mistake again, and I wonder if some people make the same mistake with me.
The combination of blank face, soft and monotone voice, and difficulty with finding the right word can be a real dilemma for me. I do exercises and I try to smile, talk loudly and animatedly, and to be aware of my cognitive situation, but it's hard to keep it all going, and when I manage to do so, it sometomes takes enough mental bandwidth that I have a hard time remembering what I want to say! When I think about this combination of symptoms, I'm surprised (and grateful) that friends can still see the real person inside.
This may be one reason why I enjoy dancing Argentine tango so much: tango dancers don't look at each other's faces, and they don't talk when dancing. Connection, when it occurs, can go around these issues.
I've just recently started a new program of voice and cognitive therapy, and I'm excited about it. Hopefully I'll have an upbeat post about this soon!