Ah I know some with Parkinson's too...

Why it’s a good thing that a doctor doesn’t talk like a plumber. 

Right, love, let’s get this brain into the MRI….NOOO! Can’t believe you still know your own name. My goodness, whoever did your veins did not have the first idea what he was doing… Quack! Wow, I’ve seen a lot in my time…but honestly. You came by in the nick of time. Better get this sorted. It might take a few months to get you back on track, but hey, you want to function somewhat reasonably, right, love?

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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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 so smoothly. You want to walk, but your feet don’t seem to know it yet. (more…)

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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. 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.…

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Parkinson’s in plain car speak

So, love. It’s not changing gear quite like it once used to? Still a nippy little set of wheels - am a tiny bit worried about the transmission fluid though. Tell me, when did you first notice that there was something wrong with your car? Mechanic wants to hear it from you The mechanic looks like he already knows what you're about to say, but he prefers to hear it from you. So you dig deep, deep into your memory. Yes, I remember when, in France, on the motorway. I wanted to overtake, but the gearbox didn’t react quickly enough - I mean, I put my foot down on the clutch, indicated, glanced in the mirror, but nothing happened, at least not quickly enough. Fortunately I was okay, but that gearbox has never been the same since. Come to mention it, the steering is also a bit strange. Everything feels…

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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 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…

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Get up and go

cropped-DSC_0303.jpgHe: What’s changed since last week and now? Nothing’s stopping you from going to that business meeting with the Chairman of the Board of Directors at this regional health care organization. He’s your client, isn’t he?
Me: Yes, but I’m probably going to burst into tears, he’ll see what’s wrong and then I won’t be able to continue oooh what I am going to do it’s the end nooooo they say that you can get dementia and everything, and what if I can’t drive a car anymore?
And your husband repeats: What’s changed since last week, when we’d never even heard about this parkinsons business and now, now that we know that you have it? 

Come on. Get up and go. (more…)

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voldemort and parkinson’s. face your demons.

Waiting for the tube in London, years back. Opposite on the wall was this great billboard, promoting lipstick. Which in itself is an alien concept to me, if it wasn’t for the powerful copy. It said something along the lines of: Face the Boss. Face your ex. Face the undertaker (ok, made that one up). Face yourself. (more…)

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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 research and innovations. All the time looking for that one particular exhibition stand. As little/much/long/short as possible The conference focused on remaining as healthy as possible, for as long as possible, with as little help as possible. All to soften the inevitable. For parkinson's is a destructive disease - your suffering increases, your need for care increases over the years, decades even. It’s a costly affair, parkinson’s. Costly for the care provider and taxing on the patient. The day’s theme was: The Future of Health Care. "And they keep telling me to live in the…

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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 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…

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⭐︎ Afraid

Afraid. Wim Rozenberg Photography.I thought that I was scared, but it seems that others are every bit as scared as me. Scared of me, my Parkinson’s, my fear, my tears. How you notice exactly, I can’t quite put my finger on, but you do notice. An imperceptible, almost reverent expectation. And then comes the inevitable question, the question that I too would still dearly love to answer: how did you first spot it? There’s always another hidden question within, a sort of self-check. (more…)

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