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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Parky Pies

myths about parkinsons diseaseI’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 me thinking that once was enough. This particular parky pie is actually correct, although it is quite easy to misinterpret. Another commonly consumed parky pie is that “only old men in grey cardigans get parkinson’s”. And they only get tremors, nothing else”. (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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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 how much you’re inevitably going to suffer. (more…)

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