A is for Awareness, but that is only the beginning.

To those who have sent me short video clips so far, as recently as yesterday were so timely; having also just last night watched a BBC documentary about a hugely funny, intelligent and talented man who’s remarkable ability to tell well the stories of his youth and of his adult life, of his successful career, in the wider context of his surroundings, of the community he grew up in and from the perspective of an older man at his ‘time of life’ with Parkinson’s, today.

This video remains unfinished. I have left out what each letter means (for now). Can you help?

Watching your short videos add to what I have described as the ‘Parkinson’s Appendix’ (a collection of images and words to try to demonstrate how diverse the population of people it affects as much as it is in the way people respond to it in different ways) knocked me off my feet, it turned my head, in fact it raised it.. because for the last six months I have half-hidden away and perhaps shamefully held my flag at half-mast, not as high as I know where it has should be. My method, my craft, my ‘shaky ability’ and passion in the creative media and it’s application to PD may be viewed by some as melancholic, dramatic or awareness for awareness sake — but it is what it is.. honest.. and for me.. what you guys just demonstrated individually in 10 seconds (to me at least) is what I’ve been denying myself all these recent lost hours, days, weeks and months as I hit my crossroads, change of course and phase of adjustment after what has been a tough time for me with PD (but not for the first and most definitely not the last time) — and that is to open my eyes and see things better; to continue to think that I can and should openly, realistically but responsibly continue to portray to those newly diagnosed (and equally to the unknowing) that we can still flourish and contribute, still do, still go, still become, still meet, still engage, still collaborate, still have the ability and drive to make something from what others might describe as inspiring or brave from seemingly ‘not much’ (but may I also note here my immense thanks and gratitude for all of those words of support and encouragement I so often receive from readers and subscribers to my posts — genuinely so — it means a lot and it often carries me somedays more than the fake dopamine drugs I have no real choice but to swallow all day and every day just to function properly). My point here is that we still try, we still meet new people, make new friends, we still get married, have children, get jobs, get busy living and face the future unknowns (the good and the bad) that life will present. We do what we may be advised or swayed to gradually but surely retreat from, that is to believe ‘at the start’ that we can’t, that we should expect this and expect that.. well no! We choose to defy the expectations or existing connotations of what we should be doing or where we will be or should be planning for, or how it will look after diagnosis, after 6 months or 6 years with Parkinson’s. Instead we choose to show publicly, openly and with some pride in our indifference to their perceptions of us. We can see their point; we are still human! yes we have a degenerative brain condition, yes we have been diagnosed and we can realistically (but and at an undeniably inappropriate and inconvenient point along the way) expect our grip on this thing we call life and the way we go about it; how we interact with it and the other people living with us on this planet (each fighting their own individual and often invisible battles of existence, by methods of some choice and means to get by, to survive) to get harder, more difficult to physically move and to live like them..but by the very fact that we are given this unwanted information, a diagnosis, evidence and a conformation of our disease should not be seen as final and neither should, for example, some of the media’s choice of words, the slim pick of crusts from the ground, in a way they may perceive to be as a responsible and accurate, gritty or realistic light simply to sell their grubby papers or to generate a days supply of click-bait — by showing the obvious but short-lived inaccuracies of what is a multi-faceted, incurable condition that millions of people live with well each and every day of the year. We are very much still here and do what you do — and that is a fact.

So here I am. This is our community and yes.. we also have Parkinson’s— so adjust your gaze a little higher, look a little bit longer than you just did, think again, because that person you see is me.

I recommend this chap, before I go:

“Parkinson’s is shite.

I’m fully aware of that fact. I hate that it’s part of my life, and I’d rather not have it.

But life is often about how you react to adversity, appreciating what you have and making the best of the hand you are dealt.”

Martin Taylor


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