A few months ago I was contacted by a young woman who had recently been diagnosed with Parkinson’s. She was keen to meet and I was keen to support her in the way that I had been supported in those early, very difficult days.
We arranged to meet in a local cafe. I remember doing the same when I met a young woman who was diagnosed four years before me. I remember wondering if I would be able to tell she had Parkinson’s from how she looked or how she acted. Would she be able to drive? Would she be able to walk normally, eat normally, talk normally? As it was, she drove to my house, she walked to the cafe (in heels), where she ate for England and talked the hind legs off a donkey and I was remarkably reassured by all of this! But there were other more subtle things that I noticed. The same things that I now see in myself and recognise are part of having a neurological condition. The struggle to find the right words at times, or forgetting what I am trying to say mid sentence, holding my cutlery in a slightly clumsy way and dropping things easily. Slow clumsy movements when trying to get money or credit cards out of my bag, doing most things left handed because my right hand refuses to do what I ask of it.
I was sure the young woman I was meeting would have similar thoughts about how I might be and I desperately wanted her to have that same sense of reassurance when she met me. And so, I was on my best behaviour. I took my medications exactly on time so I could perform at my best. We met in the morning as I’m usually more on the ball in the morning. I wore flat shoes so that I had less risk of tripping over my own feet (a regular problem with Parkinson’s). I left the house in plenty of time so I would arrive cool, calm and collected and not get flustered and shaky the way I do when under time pressure. I wanted to go all out to show this young woman that five years on from diagnosis I could act, feel and look reasonably normally.
I arrived at the cafe (a new one I hadn’t been to before). I opened the cafe door and immediately spotted my coffee companion. I can spot someone with Parkinson’s from a mile away with pinpoint accuracy. It’s easy when you know what to look for.
Deep breath, best behaviour….. I made a real effort to put a big smile on my slightly frozen face, waved a friendly wave with my slightly wonky hand and moved towards her. The smile was quickly wiped from my face, when I failed to notice the step, tripped over it, knocked over a vacant table, chair and coffee mug, all of which went crashing to the floor. Everyone in the cafe stopped what they were doing and turned to look at me as I too fell crashing to the floor.
I could not have made a more dramatic, less composed entrance if my life depended on it! I don’t think Parkinson’s was to blame, it was just one of those things that could happen to anyone but it couldn’t have happened to me at a worse moment. If I was trying to look cool, calm and collected, I had failed miserably and my pride was severely dented.
It did act as a great ice breaker and I think my coffee companion was reassured by the end of our meeting, that five years on, although my Parkinson’s was indeed evident if you knew what to look for, if I’d only spotted the step on the way in, I may have passed as being almost ‘normal’ in other ways by most people’s standards! Reassuring for her, reassuring for me, although lately I’ve been pondering about this concept of appearing ‘normal’ but that’s for another blog……