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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Here to Wherewolf

Parkinson’s manifests in a sort of delayed delivery of messages, from the brain to the hands for example. I go to pick up the toothpaste, but it takes just that little bit longer than normal. You walk down the stairs and your leg is a faltering cogwheel. Your foot lands differently than expected. Not quite […]

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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. […]

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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 […]

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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 always 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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That’s what I call comfort.

Summer 2013. Off to France for a family holiday. The boss of the holiday village is a straightforward Dutch guy. Pensionado, builder, fond of rough language. Boss says: why are you stressing about so much, relax, woman, you’re biking, swimming, walking – why for x sake? So I tell him why I need to get […]

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Gimme Hope

I was the undercover patient at the ParkinsonNet Jubileum Conference in the Netherlands, browsing the respective exhibition stands from the various providers of tools, applications, therapies, medicines and medical know-how. I spoke to health care professionals, listened attentively to Bas Bloem and other scientists, watched videos of patient testimonials, and read about the latest promising […]

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Movie

What do other people know, that I don’t? Everybody appears to have seen the movie, all of it, every scene. Even the parts that were later cut. And the bloopers. Ah, and the bonus material about what might happen if…. the audience shivers, brrrr, imagine having that condition! Can you pass the popcorn please, come […]

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