The New Cool when you’ve got Parkinson’s

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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Which disease shouts the loudest?

Parkinson’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, […]

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Parky Pies

I’ve come across a lot of urban parkinson’s myths. So many in fact that I made up a name for them – parky pies. The first parky pie I had the pleasure of sinking my teeth into, was “that people with depression get parkinson’s more often than those who are not depressed”. And there was […]

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It’s so not you!

Previously published as guest blog by the Michael J. Fox Foundation for Parkinson’s Research. 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 […]

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Minions in waiting room

That’s what it should say. No entry for those with a nasty, incurable disease. On Twitter, news sites, newspapers and, most importantly, magazines in the waiting room. Even the most widely read women’s magazines can be an absolute minefield. When you least expect it, they might run a special on your specific illness, and just […]

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Sobsnivelsniff

You bump into a friend, they ask how you’re doing, and snap – you burst into tears. You don’t want to cry. Not again. Because it invariably prompts the question: you’re still having a hard time coming to terms with it, aren’t you – isn’t there someone you can talk to, a psychologist or something? […]

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