They don’t drink enough. It’s strange, but I often see that with Parkinson’s patients. Haven’t done any research into it, but I really think you should drink more. Or don’t you have any problems with constipation? No?! (more…)
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.
Ever been to a medical specialist? Ever had a plumber in your house?
After reading this blog you will be able to distinguish between doctor-speak and plumber-speak. Let’s start with the plumber.
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…)
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…
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…)
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…)
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.
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…)
This blog was selected as guest blog by the Michael J. Fox Foundation for Parkinson’s Research and by BBC World Service Radio.
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!
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…)
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…)