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?
I’ve seen bigger moons, declared my friend on our girlies’ night out in London. The distance between the earth and the moon was tiny that night. And it was a full moon, so it looked massive. My husband called from the Netherlands, to insist that we pop outside and take a peek. A once in a lifetime event, he said. He was right: it was colossal! Quite intimidating. Spooky, in fact. My friend was less impressed. She glanced at it nonchalantly, and declared: I’ve Seen Bigger Moons Than THAT!
You sometimes find yourself wondering: What would it be like if I didn’t have Parkinson’s? Which is why I’ve listed the top 10 differences between having and not having Parkinson’s below.
The great thing about getting a nasty disease is that you start to appreciate the little things in life soooo much more than you used to. Isn’t it just wonderful to watch the sun rise, set, or whatever your sun does? To hear a bird sing, even if this particular little thing does keep you awake at 5 in the morning. You know, you’re just so happy to be alive, that not even a bird singing the same song over and over and OVER again, can change that.
The Dutch ParkinsonNet is an online platform for Parkinson's care providers that evolved from a joint initiative between the Radboud University Nijmegen Medical Centre and the Dutch Society of Neurology’s ‘Movement Disorders Working Group’. The concept is simple: build a comprehensive portfolio of healthcare professionals, provide and share knowledge and expertise, and organise events. The primary target audience is health care professionals, the secondary men and women with Parkinson’s. Quality Parkinson's care (regardless of whether that’s fragmented and split between neurologists, occupational therapists, speech therapists etc.) is a prerequisite for such a platform. Yet, even though ParkinsonNet is now relatively well known within the Netherlands, most patients don’t even pay a weekly or monthly visit to the site. If ever. It’s not necessary either. ParkinsonNet costs money ParkinsonNet costs money. Think people, offices, education and congress. For an idea of the associated price tags (the following figures have been extracted…
Use it or lose it – The doctor tells the guy who is losing his dopamine and his mobility and his freedom along with it.
The guy exercises like mad, takes his medication on time and sticks to a healthy diet. The guy is using everything he has to avoid losing his mobility and his freedom along with it. (more…)
Okay, fair enough: there is no escape. Or is there? Upon diagnosis a substantial percentage of your dopa producing cells will have already packed in. Irreversibly. By that time dopamine production will have usually reduced to at least 30% or 40% in one of your substantia nigra. Which to me is dark matter in itself. Mind you, I once asked a neurologist what a neurotransmitter looks like. “Well, he said, I’ve never actually seen one.” Right. (more…)
We all know children, we were all once children ourselves. Perhaps you still are. Or maybe you’ve got one or more children of your own. When you think about it: a large proportion of the world’s population consists of children. Those of us who are no longer children ourselves call those who are: our future.
Soooo, Mrs Robijn, tell me, what seems to be the problem? Went there on my own, obviously, I’m perfectly healthy, aren’t I. So I reply: Well, doctor, er yeah, I have a feeling that my right hand’s not quite okay, neither is my right foot and I er, I dunno, it’s like the messages are not getting through quickly enough or something. Silence. Hm. Too slow you say? Can you still smell properly?
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…
I’ve seen bigger moons, declared my friend on our girlies’ night out in London. The distance between the earth and the moon was tiny that night. And it was a full moon, so it looked massive. My husband called from the Netherlands, to insist that we pop outside and take a peek. A once in a lifetime event, he said. He was right: it was colossal! Quite intimidating. Spooky, in fact. My friend was less impressed. She glanced at it nonchalantly, and declared: I’ve Seen Bigger Moons Than THAT!
Use it or lose it – The doctor tells the guy who is losing his dopamine and his mobility and his freedom along with it.
Okay, fair enough: there is no escape. Or is there? Upon diagnosis a substantial percentage of your dopa producing cells will have already packed in. Irreversibly. By that time dopamine production will have usually reduced to at least 30% or 40% in one of your substantia nigra. Which to me is dark matter in itself. Mind you, I once asked a neurologist what a neurotransmitter looks like. “Well, he said, I’ve never actually seen one.” Right. 
We all know children, we were all once children ourselves. Perhaps you still are. Or maybe you’ve got one or more children of your own. When you think about it: a large proportion of the world’s population consists of children. Those of us who are no longer children ourselves call those who are: our future.
