Prior to diagnosis, I started to notice that smiling had begun to require a lot of effort. Over time, this has become more and more noticeable. Smiling is no longer a spontaneous occurrence. There is a time lapse from my wanting to smile until my facial muscles respond. To compound matters, when my facial muscles do respond, they do so in a slow, sluggish, half-hearted way. The end result can sometime resemble a grimace more than a smile. This lack of facial emotion or facial masking is a well documented symptom of Parkinson’s.
‘Parkinson’s Mask’ (Hypomimia)
‘A symptom of Parkinson’s that limits the accurate expression of emotion in the face due to a decrease in the speed and coordination with which the facial musculature is activated’
This inability of my face to accurately convey emotion has an impact on many of my social interactions. For example, if I am out walking and meet a friend I haven’t expected to see. Pre Parkinson’s, my response would have been to break into a broad smile and clearly and confidently, say what a pleasant surprise. There could be little doubt that my friend would know that I was genuinely pleased to see them and my intention was to stop and chat.
Now, after five years of living with Parkinson’s, if I am out walking and meet a friend I haven’t expected to see, my response is very different. By the time I realise I am approaching someone I know and my slightly wonky brain has sent a request to my face to smile, some time has already passed. My slow and stiff facial muscles take their time to respond in their limited capacity, and so, I often miss the opportunity to greet my friend with a warm smile, or indeed any smile at all. At this stage, my slightly wonky brain hasn’t even begun to think about the need to speak! My friend would have no idea whether I was pleased to see them or not and whether my intention was to stop and chat or walk on by.
Initially, I thought that I might compensate for the absence of a smile, by using the tone and volume of my voice to communicate some positive emotion and interest. However, one step ahead, Parkinson’s has changed my once clear, confident and intonated voice, to a much quieter, slower, monotone. I sound as uninterested as I look! I can therefore no longer rely on my voice to communicate my emotions accurately either.
I fear these factors combined can make me appear stand offish, aloof, miserable or downright rude. To add insult to injury, if my medication is wearing off, my ability to string a fluent, coherent sentence together can evade me and I stumble to find the right words or forget what I am saying mid-sentence.
I confess that on occasions, when I’m not at my best, I have pretended not to notice a friend and to try pass them by without acknowledging them. If unsuccessful at this, then, once I have acknowledged them, I have pretended that I am in a hurry and can’t stop to chat. This is so out of character for me but frustration and embarrassment have conspired to change my behaviour. At times like these it feels preferable to do this than to have to try to explain or excuse my monotonous, expressionless, rambling attempts at conversation!
Wearing a mask like, expressionless face can impact on any relationship, even with those who know me best. When one of my son’s could no longer tell if I was teasing him or not, we started to use a hand signal. This hand signal told him what my face no longer could. I’m having fun with you, I’m teasing you, I want you to join in and laugh with me.
Worse than an expressionless face is one that looks cross or angry when at rest. My family noticed this first and when I mentioned it to a friend, she enlightened me that this is commonly known as a ‘Resting Bitch Face’. It is not unique to Parkinson’s but is not the look I want to portray either!
‘Resting Bitch Face’
‘An unkind, annoyed or serious expression that someone has on their face when relaxed, without intending to’ Cambridge (Dictionary)
My ‘Resting Bitch Face’
(In my head, I too was laughing at the joke!)
There are many hidden challenges to living with Parkinson’s that I wouldn’t expect other people to have any knowledge of. I certainly didn’t before I was diagnosed. I love a challenge and as with most things, they are much more fun and much more likely to be successful when others are involved. So sharing my experience with others and raising a little awareness feels like a positive step in the right direction.