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.

Pretty good idea’s

Falling back to sleep at 06:00. Waking up again at 07:00 to fire up the domestic engines, getting ready for work – don’t forget those exercises – you start to run through all of the advice that you’ve recently been given. Come to think of it, you’ve actually been handed some pretty good ideas on dealing with parkinson’s. Here are the most popular:

  • Enjoy (1)
  • Enjoy (2)
  • Eat more carrots/pills/horse beans/bio-food
  • Eat less of them
  • Drink more water
  • Don’t sit for long periods of time, get up and move every 5 minutes
  • Relax
  • Exercise
  • Enjoy (3)

Unsaintly chaos

Right. Well, what can I say? “Thanks for your great advice? Wow, I’d never have thought of that – can I call you at 03:00 am in case I forget?” Naaah, I’d honestly never say, let alone think, that. You know me; I love a little exaggeration just to make a point.

What’s more, I know that most of these suggestions are sound. I know that I should live by them too. But hey, having parkinson’s hasn’t made me a saint. And I might be losing my health, but not my mind. So I deal with it from the comfort of my own chaos. A chaos of future, past, present, despair and optimism. Punctuated with work, family, friends, food shopping and the uphill laundry struggle. And of course: exercise. Great, love it, but it certainly doesn’t come naturally. I’d much rather write a blog, work or simply do nothing at all. But: 6 times a week I hit the gym, go for a run or take a long walk.

Classic advice

Can it be out of concern then that I still get so much unsolicited advice? I definitely think so. It’s an honest attempt to help. A classic example: “I know someone with parkinson’s and he’s so much better since he started doing yoga!” My neurologist smiles at the mere thought of Ms. Robijn on a yoga mat. Plus, how about this one: “Why don’t you join a parkinson’s network, to share experiences?” Tempting, but no. Or, in my case: “Isn’t it fantastic that you’re able to write blogs, must be so therapeutic!” Well, the thing is: I am a copywriter, this is what I do. Hobby blogger? Nope. I write because I hope to help my readers and because I enjoy writing.

Unsaintly chaos

So there you have it. I’m dealing with parkinson’s from the comfort of my own chaos. An unsaintly, yet comfortable chaos, day and night. As a family, we’re making the best of it. We’re fully up to speed with all of the latest research, developments and breakthroughs. I’m usually the first to know about a parkinson’s related item on TV too – and I usually give it a miss. I’m afraid I’ve become quite the expert.

We simply deal with it. And every now and then we simply don’t deal with it at all.
All in our own good time. In the middle of the night, with no one to call. Hoping to get some sleep before a new day begins. My tired mind ponders the chaos of it all and thinks:

There’s no house without chaos – take the average kitchen drawer crammed with Things. Doesn’t keep you from being a great cook. You’re comfortable in your own slightly chaotic kitchen.
There’s no mind without chaos. Doesn’t keep you from grabbing a peaceful moment to read this blog. Comfortably, and in your own time.
There’s no person with parkinson’s, who lives the life of a medical saint, following doctor’s orders at all times. There’s no person with parkinson’s without at least some minor chaos in a kitchen drawer, in their mind or wherever. That’s okay. Stick to it. It’s the comfort of your own chaos.


My tired mind suddenly clicks. Epiphany! Okay, that’s another exaggeration, but it’s close:
From the comfort of my own chaotic duvet, I dream of my response to the next person who delivers great advice. Relax, reader of this blog, it’s not meant for you, but rather for your friend, your therapist (oooh yes!) or that lady you keep bumping into, the one who keeps giving you that fabulously useless advice. This is what we’re telling them:

Thanks. But I’m dealing with this from the comfort of my own chaos.
By the way, when was the last time you tidied your kitchen drawer? Last year?! You must be joking! Well, don’t let me keep you then. Bye!