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.
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, are responsible for only 700,000 hits on ‘cancer blogs’, which equates to less than 2 per patient. (more…)
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…)
Who 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…)
Thank you, Zorgvisie Magazine, for the interview
(Dutch Health Care Management Magazine)
Mariette Robijn: ‘healthcare providers, be careful what you say’
Three years ago, Mariette Robijn (now 49) received her Parkinson’s diagnosis. In hindsight, and like so many other Parkinson patients, she realised that she’d probably been suffering from the disease for a number of years. ‘I felt that something wasn’t quite right with my right hand and foot movements’. “Nothing to worry about”, said the GP. (more…)
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 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…)
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!
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.…
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…
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 on, let’s watch another movie, this one’s not cool. The thing is, I’m the only one who’s not in the audience. Even though the movie is all about me and the 60,000 other parkinson’s patients in the Netherlands. Even though it’s about the scenarios already laid out for us. I never ever ask myself who wrote that scenario. Never. But I do continually wonder: what did all those people see, that I haven’t seen yet? I mean, they must have seen more than I have, or why else would they keep saying: stay strong, live…