I am writing this sat in the tranquil setting of my hotel balcony in Lanzarote. It’s barely 5am, if I’m honest, and I’ve not slept very well. This aside, I’ve been meaning to sit down and write this for weeks now. So here goes..
With a limited view of the sea from where I sit, my two young children and wife Jane are still sleeping in the the hotel room for a little while longer yet. As the warm night is soon to turn
into another gloriously sunny day, it will feature more eating, drinking, lots of suncream, fun by the pool, children’s entertainment and a mandatory walk to the nearest town where you find yourself searching for a bargain- as you’re still convinced that things are cheaper abroad, even in this current economic climate.
Of course, all of the above will (like the certainty of the sun itself set to rise as I type this) be surely preceded by the daily ‘sun bed steeple chase’ around 8.00am!
Anyway, like I say, the view is limited and even if I had paid more for a better ‘sea view’ room I would surely still only see as far as the horizon. This got me thinking that, as with my own life, the same perspective could be applied.
Currently, in this July day 2015, no scientific research or scientist of any kind could tell me for certain what is beyond the horizon I see ahead of me. My point here is that all I will ever have, besides a sometimes useful source of reference which is my past, is ‘now’.
Since my diagnosis back in 2011 it is the present day, in terms of what I can do today and tomorrow, which I have certainly come to value more than ever because of Parkinson’s. That is the only thing which I really feel Parkinson’s or another similar life-altering happening gives you; which is a weird sense of ‘knowing what’s coming’. Obviously, this is a myth. But internally, like a religious belief or something else, it is a ‘real thing’. If you use it in the right way it can be an empowering gift to utilise to better your life in terms of perspective.
When you get given the gift you never wanted, which is Parkinson’s Disease, it arrives unannounced at your door, flat-packed in a box labelled ‘P’ and without any instructions whatsoever to refer to as to how the finished construction will look. At this point, the natural thing to do would be to take the unwanted gift back to the shop and exchange it for something which you really would like. But this item is non returnable, non refundable and certainly can’t be exchanged for something ‘better’.
Call it fate, destiny or just plain old bad luck – whatever this is its most definitely your box. The contents are yours to keep and to start piecing together without any instructions or guidance on how best to go about it.
So this is the crucial point, like any construction project.
You can choose one of two paths:
(1) Go blindly onwards and almost fool yourself into thinking that you are fine with it and blatantly ignore the small print on the box stating: ‘Chronic and Degenerative- handle with care’.
(2) You can step back, ask questions, fact-find and talk it out with those who matter most or, alternatively, you may have someone who has been through this before.
After all, this isn’t just your disease; it will affect your nearest and dearest more than you will ever know. Even if you don’t have many people around you when you unpack the box, it’s really important that you have a good relationship with your Neurologist, email their secretaries, sort out your prescriptions so that they run smoothly between GP and pharmacy without any shortfalls (trust me, it will happen!) and, most importantly, that you hopefully find you have the God given gift of a Parkinson’s Specialist Nurse in your vicinity. Trust me, they are wonderfully helpful and knowledgeable about the disease and it’s realities.
Before I go any further, you must take what I have just said in the last paragraph with an open mind and please don’t read it as gospel. Being four years down the line gives you the luxury of hindsight and a developed sense of perspective. However, I can genuinely say that around the time of diagnosis, and the short-term initial period which follows, you can go down either of the two paths I mention. At times I certainly, and on many occasions, strayed onto the other path and then hopped back again with mixed results.
I am currently in a good place with my Parkinson’s. After four years it is not getting any better and I am a very different person as a result. But I am generally a positive person and happy with my lot – even if it has extra baggage attached. Everyone in life will have their own personal struggles, health related or otherwise, to contend with and I am no different.
It’s how you react to the things in life which ‘happen to you’ that’s important. With the bombshell of Parkinson’s, flat packed and lacking instructions, it will be down to you the way in which the foundations, supporting beams etc are all positioned and bolted in place, which is going to have a knock on effect further on down the road – in terms of how the building is used and also in its internal strength and longevity.
At this pivotal stage, the way in which you choose to unpack the unwanted gift, lay it’s contents out in front of you, or how you think you might use it once built – not forgetting who you have around to help you at that time in this lifelong building process, are all crucial factors.
Being diagnosed four years ago this very month, and without knowing it at the time, I can truly and unashamedly tell you how proud I am of the way myself and those closest to me have managed to keep my ‘build’ mainly constant and moving in an upward trajectory. Proud, yes. But I would also be lying if I failed to mention here the times when it was ‘tools down’ on more than one occasion in the four years since diagnosis.
I have cried alone, together with Jane, had long supportive discussions with work colleagues and spent what must now be by now countless hours accumulated just ‘thinking’.
I have so much more in my life than Parkinson’s and, in the most part, some of my proudest achievements and personal accomplishments have happened since July 2011.
Anyway, that’s my ‘Perspective’.
When I was diagnosed with Parkinson’s I knew nothing (I am still learning). Of course, life is a road of discovery. It just so happens that I know, for a fact, my journey down that long and winding road (thanks Paul McCartney) will feature Parkinson’s and I am gradually adjusting my life and my physical ability in accordance with ‘it’. I have no choice in the matter but I can choose now how I plan to to use its powerful influence over my body, family and career.
I hope you manage this too.
Lastly, you may have wondered why I am up so early in the morning? Well it’s the usual Parkinson’s night-related problems (which I will explore in another post).
Anyway, a restless nights sleep has its own unique benefits, particularly whist on holiday.
I may be slow and behind the everyday pace of my fellow ‘dopamine rich’ humans but one advantage to having a pretty rotten nights sleep is that I always get my towels on the sun bed of choice by 7am! 😎
Anyhow, I’m off to wake the kids..
I hope my words here make sense and offer a perspective on the disease which helps to explain what it’s like to be me. If you are reading this and you have the disease, then I hope that you find the obvious similarities in my experiences in your own personal journey with the disease.
Until next time, keep on the sunny side of life!