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

So what fun things have you been up to lately?So, what fun things have you been up to lately’  

The finest question a health care professional can ask. It also happens to be the finest question I can ask myself.

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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⭐︎ 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!

 

mariette robijn

 

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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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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⭐︎ 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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