One of the first things I noticed having Parkinson’s is the massive impact it has on self confidence and how you socialise with others. I fully admit, in the early days, I just really wanted to be able to step off the carousel, compose myself, then step back on, but life just doesn’t work that way, does it? We all have our own way of dealing with difficulties we face; mine is to face everything head on, no compromise. My family clan motto is nemo me lacessit, ‘I do not yield to anyone’, and as far as Parkinson’s is concerned, it is my motto for life.
One of the more annoying symptoms you can potentially get lumbered with is a lack of ‘drive’, general apathy, and anxiety brought about by interacting with large groups. When I was first diagnosed (quite a long time ago), I found that I gradually started to withdraw from what was an active social life- we used to go nightclubbing and to local pubs; nothing could phase me, and I was really enjoying it. I first noticed it one New Year’s Eve- I just couldn’t get ready because I was getting anxious about people perhaps spotting I had ‘something wrong’, and the classic “why do you look so sad?”. This went on, believe it or not, for a good few years- mostly during my ‘retirement period’, where I believed everything I was told, and at that point Parkinson’s could have got me. Thankfully, it didn’t, which is why I’m here today and sharing my thoughts and experiences with you. Anyway, one day during my (enforced) retirement, I realised that I hadn’t been really that easy to live with, due to my miserable demeanour. I was, to turn a phrase, a ‘grumpy old man’. Things had to change…
Summer of 2016 saw us in Florida (still my favourite holiday destination) and I had applied for a couple of jobs to relieve the boredom I was feeling- I got two interviews out of two applications (one was a guaranteed interview due to ‘disability’). One I clearly didn’t have much chance with (the guaranteed one), but I absolutely smashed the other one out of the ground!
I was back at work! Over the next few years, 6 years to be exact, I gradually rehabilitated myself into dealing with face to face contact, the daily walk to work, and interaction with others. The biggest influence on my coping with crowds and gradually getting back into society has been my darling wife; she has dragged me, at times, to places where crowds will be present. I now go to football matches (home AND away sometimes), we go to a music festival every year (Kendal Calling- which isn’t actually in Kendal…), we go camping (yes, in an actual tent), and we have recently even been to a concert where we stood near the front (there was no ‘mosh pit’ at a Paul Heaton and Jacquie Abbott gig!). It was absolutely fabulous- I really hadn’t realised how much fun I was missing out on. I now have no fear, I have managed to get over it- I think you just have to go for it. If you want to do it please don’t let the Parkinson’s voice in your head say “No , you can’t possibly do that”, because yes, you can. Every time someone tuts loudly (always when they’re behind you?), every time you get a funny look as they think that you’re drunk, due to the staggering about? Every time someone won’t give up their seat on the train/bus? Can you see where this is going yet? Every time you see someone in a flash car (why is it almost always someone in a Porsche, Ferrari or even, on one occasion, a Bugatti) parking in a disabled bay because it’s closer to the door? Or using the disabled toilets at a venue (because there’s often little or no queue) and every time someone or something tries to tell you that… you can’t do that because “you aren’t a disabled person” (not all disabilities are external), just take a deep breath and do the right thing. People are, I find, normally very kind and thoughtful; I know there are some people who you couldn’t describe as friendly, but the majority will help. Don’t let Parkinson’s take you and turn you into a recluse- the world is full of crowds, they’re everywhere; you simply can’t get away from them. Embrace them. You can walk, even though you may, like me, descend into a shuffle; you are still there, a part of the crowd. You are not ‘in the way’, or ‘holding everyone up’; you will find that if you can explain what’s wrong, people will understand- I know, I’ve been there…
Stand up, stand up straight, stand up for yourself.
Nemo me lacessit.
Peace out- Dave L