Well, as I told my specialist only a few weeks ago, my previous experiences with this popular PD medication which multitudes of People with Parkinson’s respond well to by all accounts, have been ‘Dante-esk’ to put it mildly.
‘A classical reference for me to start the week off with, Richard?’ he answered with a thankful smile.
Yes, it’s been truly infernal trying to go hot turkey in forcing my system to get used to this dreadful medicinal daimon. I don’t think I can keep going and luckily, by now an old hand at the YOPD game, he’d also told me to stop and revert to whatever else I had been used to previously in terms of self-medication, should the Madopar Rapid attempt again prove too onerous.
I hate the thought of having to raise the white flag again but I think there’s nothing for it. Once again the devilish nature of this bastard disease has left me flummoxed.
This is what I mean when I describe it as incredibly insidious, unbelievably crafty and eminently sinister. It’s like playing chess with the creator of the game and not having been afforded the courtesy of starting from a level playing field or even having a precis of any extant rules or guidelines.
It’s also very, very cruel.
When I use Madopar, my speech is beautifully clear and strong, and my confidence in addressing people is fabulous (or rather it’s just as it always was, like that of a civilian, so nothing spectacular really but just average).
However, it renders my mobility horrendously prone to insecurity, stress and anxiety and the freezing episodes can hit any time, anywhere, leaving me feeling like a Quasimodic moron – albeit a nicely spoken one – whenever I leave the safety of the most modest radius around my Wolf’s Lair.
In these times, travelling on trains, buses is a living hell. That’s why I’m grateful I was able to Go Get a shared hire car for a few days.
Conversely, when I decide on the trusted but far from satisfactory alternative, Kinson, my speech is crap and that impotent communication brings me down so low mentally and emotionally. Yet there is little freezing. The dyskinesia keeps the freezing at bay, it seems.
But what a choice ..
Yesterday, a warm gorgeous day, I was doing some washing and cleaning wearing just a smile. I previously told my upstairs neighbour, a middle aged lady who is equally infirm and also for the most part lives alone taking things one day at a time, about my nature loving ways.
Just to let her know that, at times I might be sunning myself in my own yard, which is quite private anyway. She said at the time she didn’t approve so I since have taken great care not to offend.
The last few days, however, I hadn’t heard a peep or seen anyone around so I assumed the (Central) coast was clear. Having been quite anxious as to how I would fare getting through these holidays, and feeling vulnerable at the best of times, I dreaded being without a car.
I also didn’t yet have any idea of the drunken moron factor in these parts during the seasonal mayhem. I was relieved to find the whole place an oasis of peace and quiet.
The sound of the waves rolling in through the wide open doors (the sound that is, not the waves) while I dreamt my yearning mobility dreams of being an Olympic gymnast, Wushu Master, Rudolf Nureyev, and/or Gene kelly was so soothing.
Yesterday all of a sudden, two paramedics came calling round urgently looking for my upstairs neighbour who it turned out had called an ambulance. When one them peered into my apartment, and saw me carrying a laundry basket dressed only in my best birthday suit, at least Madopar allowed me to say clearly, loudly and emphatically, ‘Hang on, one second please!’ while I found some shorts to put on quickly.
After all, at this stage I had as yet no idea as to the exact nature of this particular emergency. Additionally, my voice being so strong and clear also enabled me to simply but effectively notify them of my PD affliction.
This, then, meant that within five minutes, I had made damn sure I’d transformed that inevitable first impression of potential weirdo to poor bastard with terrible disease who’s probably fair dinkum (but likely still a bit of a weirdo ..)
Believe me, this process can be quite challenging. I’ve had to do this on several occasions in several languages on practically every continent. The fine art of surviving.
Which gives me an idea for new Channel Ten spin-off. Survivor, the Parkinson’s Trophy. Week One – Drool your way to the top. Week Two – Lost last week’s challenge? Shake if off and start again. Week Three – Survivor PD Love Island Repulsion at First Sight, did the earth move for you? Nah, just the usual tremors! [audience roars with laughter while Logie Baird turns over in his grave once more]
You get the idea.
I just can’t afford to keep freezing up. While I feel helpless and hopeless when I can’t speak, I feel it’s ultimately more dangerous not to be able to physically move when I need to. I just have to keep doing my voice exercises.
After all, a taciturn ninja can still save himself, his loved-ones, the village – all without the need to provide a running commentary. Trying to verbalise your frozen hulk out of the way out of a rampant runaway ten–ton truck is a bit more dicey, I feel.
PS. I might shelve that whole fundraising thing. Anything I put my mind to while the likes of Mad Opa, Killsong, Al Capone and Nazilect are battling it out in my poor old noggin is on a hiding to nothing.
I think I’m better off salvaging any remaining shred of credibility to kick off my PD crusade exposing the appalling lack of information around medications such as Sifrol and associated potential compulsive behaviour issues, rather than feel like I’m bound to keep making a fool of myself harping on about a pet project, as valid as I do believe that is as well.
First things first. Onwards and upwards. Que sera, sera.