Ah I know some with Parkinson's too...

Why it’s a good thing that a doctor doesn’t talk like a plumber. 

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?

The worst Parkinson’s prejudices are mine

Mariette Robijn

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.

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Poor people’s ParkinsonNet

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…

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use it or lose it

what some docs tell youUse 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…)

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Parkinson’s. Escape from Parkatraz.

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…)

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Dear Parkinson’s, take your hands off my cake. Now.

If you’d told me four years ago that we’d be having a new veranda erected in the garden today, I’d never have believed you. Or that we’d both still be working and I’d have put on 8 kilos despite having exercised more over the past 4 years than I ever did in the previous 46. Nope, I’d never have believed you back then. I mean, when the neurologist tells you that you have Parkinson’s disease – a difficult diagnosis to swallow, Mrs Robijn – you’re pretty much certain that your life is over. And yet, here I am tapping away on my keyboard as usual. Now that’s what I call a wonderful anti-climax. Okay… just for a minute or so.
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Young words of wisdom

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.

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Fantastically Un-therapeutic

MR gardenYou might have guessed that I’m not fond of dealing with Parkinson’s a.o.m. (and other misery) in life. Thing is, not-dealing with stuff will most definitely benefit our evolution. Not-dealing means nót settling for second best. Take monkeys. Monkeys are extremely good at settling for second best, which is why they’ve been eating raw leaves for yonks. No monkey has ever come up with the idea of boiling its leaves, thankfully so, as cooking food is the ultimate key to an accelerated evolutionary path. They simply deal with raw leaves, even though it will keep them up in those trees for yet another million years. (more…)

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It’s been 50 years since 6/6/66, Life, so can I have a word?

  You’ve stuck by me for 50 years now Life. And you’ve given me a lot. A healthy and playful youth, two degrees, a couple of foreign forays in London and Tokyo, a career, the lot. Thank you, Life. You’ve given me 2600 weeks, the last 1200 of which the ‘we’ has embraced the ‘me’. Life - I want to thank you for changing ‘Me’ into ‘We’. For the husband in a thousand, no, a million, the one and only. For the happiness our children bring. Words fail me, Life. You’ve given parents, brothers and sisters, Life. Thank you. And, Life, you’ve given us friends, because you knew only too well how much we, okay, I in particular, love to talk with friends. Ah, remember that imaginary contract of mine? Well, let’s forget all about it. What’s the point of contracts when they don’t even exist. Between you and me, Life: you're a real…

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⭐︎ Sorry. You’re the 50.000th visitor.

Bergamo, poort
Fotografie Wim Rozenberg

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?

 

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⭐︎ Oy, Life, you and I need to have a little talk

Zeg LevenYou 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…)

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Yes or No. Remembering WWII.

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…

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S’nosnikrap

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?…

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StripeyDressy never had a baby in a tree.

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…

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