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

So what fun things have you been up to lately?So, what fun things have you been up to lately’  

The finest question a health care professional can ask. It also happens to be the finest question I can ask myself.

I’ve seen bigger moons than THAT!

moonI’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!

 

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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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⭐︎ 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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Ten things I’d tell myself if I were my friend

Mariette Robijn

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.

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Einstein, it took parkinson’s to understand you

hands

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.

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How to talk to my doctor. Ten tips


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?

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The New Cool when you’ve got Parkinson’s

Wim Rozenberg Photography
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.

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From the comfort of your own chaos

Chaos dealing with parkinson'sWho to call in the middle of the night, when you’re in despair? Who’s online even, at 03:00am? Now you know why I publish in your time zone, dear readers in the US, Canada and Australia. Joking.

I’m afraid there’s hardly anyone you can call. And you don’t want to be waking your partner for the 1000th time either. So there you are. Just deal with it, you keep telling yourself. Go to sleep, breathe, read or whatever. But just deal with it. (more…)

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⭐︎ What to say to a person without Parkinson’s. 9 Tips.

Some of my best friends don’t have parkinson’s, but I still respect them. It can be hard though, to know exactly what to say at the right time without putting your foot in it. I mean, if you don’t have parkinson’s, what DO you have? Can’t be anything special, now, can it. But that’s where we are wrong, we, the people with parkinson’s. So to help you in your next encounter with someone who very clearly does not have parkinson’s, taking you quite off guard, I’ve drawn up a little list of things to say or ask.

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The worst parkinson’s prejudices are mine.

The worst prejudices are mine

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. (more…)

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