Recently I went to Oxford for the day to teach a training course to a room of about 30 industry professionals. As I stood at the front of the room presenting slides, facilitating discussion and writing on the flip chart, I noticed several times people looking at my right hand.
When I present I gesticulate with my left arm and hand but my right hand typically sits close to my body in a claw-like position unless I consciously move it. It’s a similar story when I walk: my left arm swings naturally but my right arm just hangs down vertically unless I consciously instruct it to move.
These are classic Parkinson's symptoms.
As I was presenting I started to become self-conscious and questions began running through my mind.
Do they know what’s wrong with me?
Is my posture distracting them from what I am saying?
Do they think I’m a freak?
Should I tell them I have Parkinson’s?
Similar things happen to me sometimes in meetings, more frequently in client meetings where I am a bit more on edge. Towards the end of the day I am very tired and start to fumble my words – do they think I’m an idiot, I wonder. Or from time to time my right hand tremors slightly – they must think I’m a nervous wreck, I tell myself.
I think about just coming right out with it and telling them what I have, but of course I never do.
Then there are interactions with people when out and about: I take a little longer on the stairs than many others at the tube station; I’m sometimes a bit out of it at the cash till; and I have the Parkinson’s expressionless face which can be a bit creepy.
There’s no easy answer to the question of when to tell people you have Parkinson’s.
On the one hand transparency makes things a lot easier and people are mostly understanding and supportive.
On the other hand, I don’t want to come across as an attention-seeker, or a bit of a moaner, or someone expecting special privileges. And of course, probably most of the time whoever I am speaking to hasn’t actually noticed anything anyway – my mind is just creating an issue that isn’t there.
So I tell people selectively and over time.
First I told family, including Rosa, and close friends. I also told my boss at work early on. Then, bit by bit I told all my friends. In addition to my boss and HR, I have told perhaps half a dozen people in the office – those I know well and trust.
Surprisingly when I have said to people in the office, “do you know about my disease?” they all claimed they had no idea. I have no reason to doubt them but I assume that, by now, eight months after I broke the news to my boss, that word must be slowly spreading.
Sometimes, as I walk to the coffee machine or head to a meeting room with my right hand hanging limply, I catch the gaze of someone I've worked with.
I think to myself: "Do they know?”
