IS IT WRONG TO BE “PERKY” WITH PARKINSONS’s … A RECENT REPLY TO A POST OF MINE ON FACEBOOK MAKES ME WONDER.
Recently I commented on the determination of a fundraiser who is three and half years into diagnosis, but my words of what I considered to be uplifting encouragement was met with the following comment of me, “The perkiness I hear is another form of denial … jmo (just my opinion)”. I’m unsure, whether the author has seen:
a) straight through me and I don’t know it yet!
b) or, doesn’t believe that perky is a true characteristic that should be portrayed by a sufferer?
At first, I was cross but as I thought about my symptoms and compared them against those of others I did wonder if it was not the author but me.
As even today a colleague with whom I had worked for many years, sat this morning stunned as I revealed my condition. The reason for this being that for the majority of the time my symptoms are very stable and for the most part I can be funny, perky and sunny. But since coming to terms with my diagnosis and reading so many more forums, articles and posts I now understand that for the majority, no two days are the same and because of the spasmodic up’s and down’s, finding the correct level of medication is an ongoing battle and probably leaves them feeling not in control. Therefore I admit that retaining a sense of light heart, sense of humour or “perkiness” can be tough. So am I too perky with my writing. And inadvertently unsympathetic about the mindset that some fellow sufferers struggle with day by day.
I liken this to an incident in my last role in London. I was described by one of my younger female colleagues as the Fairy Godmother, who swept into the office sprinkling her fairy dust and with an infectious smile, sunny disposition and a strap line to which I only ever laughed; somehow managed to cheer up an office of heavy hearts and often heads! But to be honest, not all who sat in the openness of the floor wanted to be cheered up. The nature of what was happening in their lives meant they didn’t want Miss Sunshine bouncing about all day. It wasn’t how they were feeling and for them, it was hard to keep up. So is my upbeat “perkiness” being perceived in this same way by those with my condition who are not able to enjoy life as much as myself?
It’s a tough question for me to ask and I’m not sure I am keen to hear the answers, but I would genuinely be very interested to hear as many opinions as possible. On reflection I think it’s about balance and yes, of course, I truly believe that to beat Parkinson’s head on this must be done with a smile and many giggles and laughs but I also recognise that it’s OKAY to lose yourself in your duvet and once in a while just pronounce … you know what, I’m just having a bad day!