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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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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★ It’s so not you!

This blog was selected as guest blog by the Michael J. Fox Foundation for Parkinson’s Research and by BBC World Service Radio.

It's so not you!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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