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?

From the comfort of your own chaos

Chaos dealing with parkinson'sWho 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…)

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Hairdresser

I’d been needing to go for two weeks. I’d tried salvaging it with a little mousse, gel and wax, but without much success. At the kitchen table the kids suggested: short isn’t necessarily the answer, mama. True, but neither is long. So, off I went to the hairdresser. She’s young, meticulous and doesn’t sport a trendy new hairstyle and colour every time I see her. She’s also polite. She knows exactly how to handle my oddly positioned crown and precisely where I’m going silver, or almost silver grey. And she instantly senses whether I’m in the mood for a chat or not. Yesterday, and not before time, I plonked myself back down in her chair. She immediately went to work with her scissors and every now and then, checked to ensure it was symmetrical. She cut a bit more and gave a careful blast of the hairdryer. Then I asked…

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The best doctor doesn’t know how I feel

Maatwerk ouderdomspakThank goodness! My neurologist doesn’t know what my sluggish hand feels like. He has no idea how it feels to crawl out of bed, stiff as a board. Neither does my occupational therapist. Yet, despite not knowing what it feels like to have parkinson’s, my neurologist does know how to help me. That’s why he’s a doctor. (more…)

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Interview Health Care Magazine

parkinsons real life storiesThank 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…)

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Coverstory of Parkinson Magazine, October 13, 2015

This is the EN translation of the coverstory of Parkinson Magazine, October 13, 2015

Thank you, Dutch Parkinson Society – for allowing me to share my story.
Thank you, Astrid Smits, editor of the Parkinson Magazine, for the interview, patience and for so carefully putting my story into words.
My friend Lesley Gunn translated the original NL version into EN.

For those who cannot write.
For those who can’t find the courage to write.
For those who, just like me, can be at a loss what to do with this Parkinson’s business.
For those who have a story to share, but are unable to do so.
It’s for you that I am sharing my story in Parkinson’s Magazine. Written (NL) by a careful editor, Astrid Smits.
This story is about me, about you perhaps, reader.
Thank you Dutch Parkinson’s Society, for allowing me to share my story. (more…)

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⭐︎ What to say to a person without Parkinson’s. 9 Tips.

Some of my best friends don’t have parkinson’s, but I still respect them. It can be hard though, to know exactly what to say at the right time without putting your foot in it. I mean, if you don’t have parkinson’s, what DO you have? Can’t be anything special, now, can it. But that’s where we are wrong, we, the people with parkinson’s. So to help you in your next encounter with someone who very clearly does not have parkinson’s, taking you quite off guard, I’ve drawn up a little list of things to say or ask.

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The worst parkinson’s prejudices are mine.

The worst prejudices are mine

The great thing about getting a nasty disease is that you start to appreciate the little things in life soooo much more than you used to. Isn’t it just wonderful to watch the sun rise, set, or whatever your sun does? To hear a bird sing, even if this particular little thing does keep you awake at 5 in the morning. (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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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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