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

⭐︎ 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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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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How I missed Parkinson’s early warning signs

signsJust who, exactly, did get them right and in good time, those early warning signs of the latest earthquake? The scientists? Nope. The locals? No, unfortunately not them either. Did anyone even pick up on the Japanese tsunami in the first place, never mind in time? Right. So, in comparison, missing the early warning signs of Parkinson’s is an easy mistake to make. The early warning signs of Parkinson’s are but a tiny tremor to the system, when compared to the tectonic tremors of an earthquake. We tend to miss both. (more…)

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Which disease shouts the loudest?

microfoonParkinson’s. Without a shadow of a doubt. Indeed, we 50,000 Dutch parkinson’s patients are responsible for literally dozens of blogs. If you Google the search term ‘Parkinson’s blogs’ you come up with a whopping 249,000 hits in the Netherlands alone – that’s roughly 5 per patient. The 450,000 Dutch cancer patients on the other hand, are responsible for only 700,000 hits on ‘cancer blogs’, which equates to less than 2 per patient. (more…)

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Comedy is Tragedy plus Time

Although you might not normally put it quite like that. Not unless you’ve been absorbed in your own personal tragedy for a very long time. Tragedy + Time. That’s exactly how Michael J. Fox put it in an interview, and he certainly knows what he’s talking about. He makes light of it; he’s not going to dwell on his tragedy. Not anymore. (more…)

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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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Hairdresser

I’d been needing to go for two weeks. I’d tried salvaging it with a little mousse, gel and wax, but without much success. At the kitchen table the kids suggested: short isn’t necessarily the answer, mama. True, but neither is long. So, off I went to the hairdresser. She’s young, meticulous and doesn’t sport a trendy new hairstyle and colour every time I see her. She’s also polite. She knows exactly how to handle my oddly positioned crown and precisely where I’m going silver, or almost silver grey. And she instantly senses whether I’m in the mood for a chat or not. Yesterday, and not before time, I plonked myself back down in her chair. She immediately went to work with her scissors and every now and then, checked to ensure it was symmetrical. She cut a bit more and gave a careful blast of the hairdryer. Then I asked…

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Coverstory of Parkinson Magazine, October 13, 2015

This is the EN translation of the coverstory of Parkinson Magazine, October 13, 2015

Thank you, Dutch Parkinson Society – for allowing me to share my story.
Thank you, Astrid Smits, editor of the Parkinson Magazine, for the interview, patience and for so carefully putting my story into words.
My friend Lesley Gunn translated the original NL version into EN.

For those who cannot write.
For those who can’t find the courage to write.
For those who, just like me, can be at a loss what to do with this Parkinson’s business.
For those who have a story to share, but are unable to do so.
It’s for you that I am sharing my story in Parkinson’s Magazine. Written (NL) by a careful editor, Astrid Smits.
This story is about me, about you perhaps, reader.
Thank you Dutch Parkinson’s Society, for allowing me to share my story. (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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★ It’s so not you!

 

mariette robijn

 

And she was right. She casually hit the nail on the head as we chatted by the meat counter in the supermarket. That’s the thing with: illness, tragedy, loss…it’s so not YOU. Neither is a Parkinson’s diagnosis at 46. It’s just not how you envisaged your future. Fair enough, it’s not really anyone, my friend continued, but you…? No way, you’re so funny, you always make me laugh!

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Can I have that disease in English, please?

When I was working in the City of London, I found it perfectly acceptable to shout to my colleague across the dealing room: I’m not your dotdotdot secretary! Answer your own dotdotphone. I do admit though, that kind of language was par for the course there. So, it didn’t really feel that bad. At all. Liquid lunches were also the norm. When I was about to quit my job at a Japanese investment bank, my girlfriends and I naturally headed to the pub for a gin and tonic and a bag of salt & vinegar crisps to line our stomachs. At midday. I was already plastered after the first swig - yeah, you tend to make strange choices when you’re deliberating in English about how to tell your Japanese boss - in Japanese - you want to resign. But quit that job I did. And it was a good decision.…

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Power of the patient

Undercover patient A few months ago I was an ' undercover' patient at the ParkinsonNet Jubileum Congress (2014). Man, that was stressful. Imagine taking a tour in your future of less less less smaller smaller smaller. I made a point of finding the Gimme Hope handouts. They were there, but not exactly in a goody bag. I bumped into quite a few people I knew, who were mostly surprised to see a real patient at a therapists and researchers event. And they exclaimed: oh, you still look great. I’d probably say the same thing; it's also nice to hear, but just suppose it was the stunningly beautiful Angelina Jolie? You wouldn’t walk up to her and gush: wow, you still look amazing! Would you? I wouldn't. I must admit, I often greet people (people with one serious problem or the other): You look fantastic! Don’t ask me why I do…

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