‘Just purse your lips and whistle, thats the thing.’

So that was London. A month earlier than planned but such a great amount of progress made.

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Why did I visit? What’s the point of all this? What am I trying to achieve?

Well, like any person setting out to do something new, out of their comfort zone or unfamilar – I had the usual doubts, second thoughts and basically worried that I had set myself up to fail or look silly. Luckily, I didn’t, and the next leg will take place in early February.

Several months ago I started the ‘Parkinsons Map’ – one of many ideas that tend to materialise, once in a while, managing to escape the confines of my ‘leaky brain’. At the time the map seemed like a good idea, even though I wasn’t fully aware of what its potentaial benefits might have become. Even though ‘#1in20Parkinsons’ and the ‘#youngpdnetwork’ are quite new and still very much developing; the map and what it stands for shows that we (working age people) are very much active, as patients.

Now I know what some people might say: “Parkinson’s for life, but it’s not terminal or it could have been much worse..”. I would agree that it could well be.. What strikes me the most about this often used comparison is why say it in the first place? Saying that its not that bad, means I will be somehow reassured. Or, rather, is it a tool used to avoid further discussion or to expose an understandable ignorance to the condition.

To help explain I quote Martin Taylor, dx barely into his thirties just over a year ago:

Dropping The P-Bomb, Location: Local Co-op

Martin: ‘Just the beer, orange juice and a lucky dip please mate’ takes wallet out dislodging 50p to the ground from jeans pocket
Cashier: ‘That’ll be £8 Mate’
Martin: Bends down very stiffly to pick up 50p
Cashier: ‘Are you in pain mate?’
Martin: ‘nah mate I’ve actually got Parkinsons’
Cashier: ‘oh have you? I’ve never liked the taste of Becks ‘
Martin: ‘Yeah it’s a bit of an acquired taste, catch you later ‘

I also recently read about the number of ‘decibels’ the Parkinson’s community arguably generates in blogs, social media etc – basically as a ‘patient voice’.

This got me thinking about my part in the collective ‘noise’ that is ‘Parkinson’s awareness’ and the reasons why I have invested so much of my time, effort and energy (1000kw of kinetic energy to be precise – generated solely by the ‘disco-needs-ya).

As I type this blog, on the train home from London, I am hitting all the right keys but not necessarily in the right order – attracting the odd look as I appear to be attempting to re-enact the opening credits of ‘Murder She Wrote’. Still (ha!), like with my approach towards the many other motor and non-motor symptoms with which I generally go to battle with at some point in the day (I don’t just shake!)- I just find a way to work with it – or accept that for maybe 30-45 minutes at unexpected periods I will just have to sit it out and wait for the wind to change, come around and fill my sails once more. For example, it is my bladder that usually has the final say on which seats I should best choose to sit on this weekends train journey, and it is my constant worry of rampant Dyskinesia and (equally) the then quite sudden ‘off’ periods (Bradykinesia) which often influence my thought process when heading to the shops or when to set off from work or indeed attempt to even get to work in good time!

What point am I trying to make? Well, its quite simple really. With every condition, chronic or otherwise, we as ‘patients’ can (to some degree) help ourselves and, I would hope, others (in the future or those who may be fearful of what could or would possibly happen if they were more open). So by being open about their ‘condition’ such as Parkinson’s Disease and, if they can and wish to, should find a way to channel the noise generated into some sort of tune that the general public might hear, entertain to and possibly experience that ‘momentary awareness’ that us ‘parkies’ hope the leading Parkinson’s organisations will capture or achieve across the country (and globally) one solitary week out of 52.

As my fingers are now begin to lose speed and dexterity, as my sinemet wears off, and as my train approaches Manchester, I shall leave you with one last point:

If one Parkinson’s organisation’s main focus is working towards a cure or better treatments, and another to providing patient support and services which are vital to patients (accessed at some point in their journey with this chronic disease) – then what’s our role as the patient?

Our role as the ‘patient’ is to engage with our Parkinson’s (while we physically CAN), to talk about it with other patients (to support and to educate) and most important: to shout, sing or just whistle your part in what is, and always will be, the collective noise that is raising awareness to make life easier for us all and to encourage more patients to join us.

“The next stop will be Manchester Piccadilly..”

David
#1in20parkinsons