Right, love, let’s get this brain into the MRI….NOOO! Can’t believe you still know your own name. My goodness, whoever did your veins did not have the first idea what he was doing… Quack! Wow, I’ve seen a lot in my time…but honestly. You came by in the nick of time. Better get this sorted. It might take a few months to get you back on track, but hey, you want to function somewhat reasonably, right, love?
You promised me a lot, Life. Happiness, success, a touch of fame, even if I didn’t know exactly what form that would take, a family with the love of my life, living to 100. Sooooo, can we take just a little moment to discuss, Life? That’s if you can tear yourself away from lining up yet more surprises? (more…)
Every year, on 4th May, we go to the ‘Eerebegraafplaats Bloemendaal’, to visit the grave of my grandfather, Hilbert van Dijk. Shot in the dunes on 16th July 1944, along with the Post boys and a number of other young men. Up until 2008, I could still call my grandmother, when standing at Opa's grave - she lived to almost 102. She was, just like her husband, a brave, extraordinarily brave, member of the Resistance. And when you make that silent march through the dunes to the 'Honorary Cemetery' and stand shivering slightly by the grave, then it’s almost as if you too are just a little bit brave. Not that our pain is anywhere near their pain or fear. Let's face it, you jump in your car, pop on some music, bar of chocolate for the journey. Pompidom, wonder who’ll turn up this year? How very different from what…
I remember it so well - what it was like before, when we were not yet – when I was not yet – and before they, before anyone. Others have long since forgotten what it was like before and might think I’ve always been like this. They’ve got used to it, they hardly ever think of what you were like before. Before and After You do. You think in terms of Before and After. Problem is: there’s nothing in between that 'Before and After.' It happened just like that, all they said was a hasty: "Here ... catch!" and that was that. You suddenly landed into the world of ‘After’, too scared to even open your eyes in that entirely new world, cautiously peeking through one eye, to make sure that your family was still around, a bit later you dare to check who else is there. Huh?…
Did I tell you about this lady who had a baby in a tree? Goodness me! I’ve got such terrible pack pain. Oh yeah, I suffer from that too. But in my case it’s a suspected double hernia. Nothing they can do for it. At least you can still walk, I see. I feel awful. Such a bad head! Must be that hay fever again. Oh yeah, I know someone with that. They can’t step foot out of the house these days, not unless they’re wearing a sort of space suit. Now that is bad. Have you any idea just how much homework and exams I’ve got this week? Oh yeah? Well I heard that there were no school holidays in the UK at all any more. You have to study all year round. Without any grant by the way. And you think you’ve got it bad! Do you realise…
I once said to someone who gave me unsolicited advice on how to deal with Parkinson’s: look, I might be losing my health, but I’m certainly not losing my mind. So if I need advice, I’ll ask for it, okay? And you might or might not be on my preferred shortlist of advisors. That was a bit harsh.
It fell apart. I truly believed, felt even, that the world had fallen apart. Heard it rumbling throughout the night, louder and louder and then! Then what? Worlds do tend to fall apart from time to time. Ours did when one of our children died. In fact, it was her world that fell apart, her future. But our world and our future were forever tied to hers, so our world fell to pieces too. The word Acceptance is out of the question. Nope. Not me. Picking up the pieces to rebuild a cracked and broken world, absolutely. You have to build a world, in order to be able to face the future, a world for your family of 5 + 1. And somehow you manage, you get back on your feet. Stumbling over the rocks and stones of your previous world, carefully picking them up, carrying them with you wherever…
Whaaaat??? It’s true. I want to give up that whole ‘control’ thing. Especially when it comes to the health care that I receive. Control is a word that doesn’t belong in the world of health care. At all. When I studied Health Care Management and Administration, a long time ago, it was trendy to talk about demand-driven care. More than 20 years on and it has yet to be successfully implemented.
This time round we’re organising the Parkinson’s Awareness Super Cure Games. The whole world is taking part, so millions of people. We’ve divided the Games across a number of different countries. Every country has its own team of players, its own audience and is vying for the same trophy: The Super Cure Trophy. To make things a little trickier though, each country can only win 1 small piece of that Trophy. And you don’t know before hand which piece it will be or, indeed, with which other country it will fit. (more…)
I had such a good laugh the other day! You? No? Why ever not? Never been through the mill? Strange. Nothing serious on the horizon either? Granted, you never know of course, but you really mean to say that there’s nothing even remotely unpleasant on the cards? So, what do you use for joke material? (more…)
For some reason, the thought of losing my freedom of movement fills me with particular dread. Why, I can’t quite put my finger on. When I try to imagine it, I picture myself in a room clad with dated wallpaper, sitting in a grimy chair with a not-so-fresh glass of water. With a straw. And, I’m waiting you see, just waiting.
Disruptive is quite a good word. A word that actually sounds similar to what it means. Not quite like rupture, which is usually bad news. Disruptive is better. Any idea what it really means? Well, the verb disrupt means: to interrupt the normal flow of business, to prevent something from being able to follow its normal course. (more…)
ID card? Where’s my hospital ID card? And socks, am I wearing clean socks? What if I have to undergo an examination for one thing or another, on that paper-covered couch in my whiffy socks. And he’ll naturally assume (I have a he) that I’m not looking after myself properly anymore. You bet he’ll ask: are you having difficulties getting dressed?
They don’t drink enough. It’s strange, but I often see that with Parkinson’s patients. Haven’t done any research into it, but I really think you should drink more. Or don’t you have any problems with constipation? No?! (more…)
I was 4 years old and made a Decision. The photo captures the moment perfectly. I might have been young, but I decided that the photographer was stupid, along with his studio, the backdrop and everything else. And with that decision came a vision: in my life, I was going to do things very differently.