Parkinson's and DBS: the skinny

It's a funny thing - agendas, motives. Something I ask myself a lot; 'what is my agenda here?' I don't know about you, but I have a great deal of struggle even finding the real motive behind whatever I'm doing. I confess to being honestly fearful of my 'hidden agendas'. Whom do they serve? Am I 'righteous'? Or am I self-serving, egotistical...'just wanna be in pictures' as the song goes. It really bugs me - a lifetime of questioning myself. There again, I have friends that will say I 'think' too much....ha!!

With that in mind, I feel the need to 'fes up to the story behind my Parkinson's posts. Why? Because sometimes you need to bounce ideas like a sonar...see what comes back. Like everybody else here on LinkedIn, I need accountability. If you're one of those people who think you're immune to cause and effect, culpability and responsibility for your actions, I'm tempted to say 'good on you'! Except it's not good for you, eh? Okay, maybe you don't care about my motives. Fair enough. But you should - I care about yours, after all....it's what defines your integrity. And I can smell bullshit a mile away...expect you can too.

So, after exposing myself as the furious ball of angst I am (oh, and quite conceivably schizophrenic, as I jump between joyful abandonment, ire, language, pith and empathy) , I deliberately leave myself unguarded for the pickin'. I invite you to go ahead and take your best shot.

If you happened to read my two PD posts, you'll have seen that I display a certain 'bias'. I propose that this is based on all the homework I did, and not on the fact that my husband's noggin' was blessed with the 'best' devise as happen-stance.

I 'touted' Neuro-Everybodies shamelessly, I admit. At the time, I merely wanted to hear what they had to say about my posts. Now I realize that their kudos have given me a large degree of credibility that I didn't have before. That's heady....no doubt about it! My 'agenda antenna' was now on full alert. And for you, my Neuro-Noggins? God love ya - every one of you! I'm not saying that to be nice or slithery; I really mean it. Lemme tell you why; or let me give you two variations of the same reasoning:

1. That's what you do with each other: exchange ideas.

2. You've shown me something remarkable: the higher you are, the less hubris you have.

Man alive....I hate hubris, conceit and other forms of mental masturbation. And I sure as hell can't be dealing with no big fat ego here (except my own??). Actually - and I accept I may be wrong in this summation - I don't think I have an ego. Tell you what I DO have; indignation. Rather hope that it's 'righteous', is all. I honestly applaud all you peeps for keeping your cool, for finding another path when it all goes wrong, for never allowing for defeat - how you do that, I don't know; but you do - you must. I read about you - your passions. And is clear that all you have discovered is painstakingly (and, no doubt, painfully) gained. It's truly inspiring and a little unnerving to really, finally understand that is what you do...never mind how!

BTW? Nor do I suffer from vanity - yup: that's a shot to you guys (only a couple but, you know who you are...) who have mistaken LI for some dating site. I'm old enough to be your grandmother, silly boys!

My sole raison d'être to begin with was (and still is) to somehow get this information to the patients. That much is clear....to me, at least! Interestingly, one of the 'incumbents' I refer to has asked me to present myself to them...very nicely asked. My immediate reaction is to say that I know a turkey-shoot when I see one, but I also am ambivalent : - should I, in fairness, give them the right-of-reply? Pondering that still, I think I shouldreally except for one, tiny thing: my brain. Or should I say my lack, of brain. I may be savvy on an intuitive front, but I'm in no way stupid enough (oxymoron, I know) to put myself under the glare of a load of peeps from the other side of the warring-faction and expect anything good to come out of it. I know my limits. Hell, if I were as mentally-blessed as they are, I'd be one of my Neuro-Noggin's, no?

Back to my mission. I touted PD Foundations, Institutes, Associations etc. Clarity was not too far behind - I knew that they couldn't publish verbatim my stuff, but I hoped...

So now, I'm stuck. Come to a complete stand-still. As in all things medtech, this is time-sensitive stuff. BSC is trialling currently in the US, where patients know next to nothing about their choices. Even less than their global counterparts - I humbly leave the third-world out of this, like they haven't got enough misery. And being ultra-conservative (I know - I'm a Yank and I've split my time between the UK and Stateside), the mere idea that they have a voice if they work collectively is akin to a foreign language. So used to the status-quo are they, that they shy away at the mere thought of questioning their own Neurologist. Of course, I'm being melodramatic in that last line, because there's always a few wayward ones - God love 'em!

Now I have to talk a little about a less understood side-effect of Parkinson's. Why? Because it's pertinent. I do wonder what percentage of all PDers are active in even so much as email, in their local PD group or Association? To me, that's another oxymoron. I bet my not-so-sweet ass that the numbers involved no way reflect the true totality of PD patients. The reason? Parkinson's is a BUSY business...all the way 'round. For the family, for the carer, for the sufferer. There really ain't a whole helluva lotta time to'break' from it. Certainly for us, because PD makes you poor (depending on what you did for a living previously), so we spend time trying to cover our bills. Aw....poor us, eh? Yeah. TMI? Bite me. But I'd be fairly certain there's a lot more out there in our position, and that's the point; and that's why it's so very hard to reach them!

Here's where I reach my dilemma: media & Publishers....Newspapers, mainly. I've been hustling them, but outside of a Belgium broadcast station, Radio Parkies - who said they'll be reading my posts over the air, where do I stop? When do I admit defeat? Have I already over-stepped the mark of walking that fine line between altruism and self-serving? Or am I now just 'venting'?

Just to finish, let me tell you what I found in this amazing world of LinkedIn. Unbridled passion (as in the origins of the word: 'to suffer for'). My faith in humanity has been renewed - far beyond what I ever believed. Sure, I've bumped into a couple of jerks, but the sheer LACK of tiresome and cumbersome baggage like hubris is such a blessed relief, it's outstanding. I'm finding myself egging so many on all on me lonesome like a seriously over-aged cheerleader. Their fervour is contagious, courageous, thrilling and so bleedin' smart it makes my brain hurt...but hell - that particular organ of mine has been seriously starved all it's pathetic little life - I'll put up with it gladly!!

So if I question my agendas, motives and actions; can't imagine how 'you' must feel about your own? Maybe it's more evident in me because I simply ain't as smart as you - dunno. You tell me. Double-dare ya.