I don’t believe in Parkinson’s

Obviously I know I’ve got Parkinson’s. But I don’t believe in it. You tend to believe in things that you don’t have or cannot grasp. Things that are intangible. You need faith, in other words, to keep believing. I believe in the child that we lost – I can never hold her again, but I […]

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Planet Researcher to Planet Patient (by Simon Stott)

Simon Stott is a researcher who makes the unusual effort of explaining the science and research that is currently being conducted on Parkinson’s disease in plain English. He made an even more unusual effort by writing an answer to my blog “Planet Patient vs Planet Researcher.” From his site The Science of Parkinson’s About Simon Stott […]

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Planet Patient vs Planet Researcher

If you’ve got Parkinson’s, you tend to think that all those researchers should just get a blooming move on and find a cure. Or an effective therapy at the very least. I trust you researchers think the same. Yet, patients are on a totally different planet to researchers. From a distance, you could be forgiven […]

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Don’t. Patientise. Me.

So, we’re finally ready to start boxing, and then they go and patientise it. Does a therapist really need to come and check if I can handle it? That I won’t do myself a mischief? As if a therapist has more idea about boxing or Parkinson’s than I do. Or, more importantly, myself. I mean, […]

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Try and make it look at least a bit like Life!

I do boxing, Parkinson’s boxing. Our coach often says: “Come on you lot, try and make it look at least a bit like boxing, eh.” Those are powerful words. They convey a bit of everything: humour, challenge, reality. Because, let’s face it, if you’ve started boxing in your 50s and you’ve got Parkinson’s, it doesn’t […]

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British Medical Journal, Onderzoek naar Parkinson moet vernieuwen

Dit is de Nederlandse samenvatting van de blog die we met onze Parkinson’s Research Advocacy Group hebben geschreven voor de British Medical Journal. “Als Parkinson patienten en research ‘Advocates’, belangenbehartigers, blijven we hoopvol dat de wereldwijde overvloed aan research naar parkinson binnen afzienbare tijd zal resulteren in behandelingen die onze kwaliteit van leven structureel verbetert. […]

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Listing the Impossible

Parkinson’s is a disease of loss. At first, you only lose the small things. Then you lose a few more until it eventually becomes quite a lot. You can see this coming, even if you don’t exactly know what you’re going to lose and when. The things that you lose – writing with a pen, […]

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Did I tell you the one about the basketball player, the neurologist and the blogger?

If you’re the greatest basketball player in the world, then you consistently score in 450 out of every 500 shots. In other words, you’ve got a 90% success rate. Not bad, huh? But when that same basketball player appears on the news, it’s all about those 450 baskets and not the 50 failed attempts. Meanwhile, […]

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Finishing what I didn’t begin.

The title says it all. You could skip the entire blog, because you already get it. It feels great to finish something that you began. Something that you chose for yourself, something that’s truly yours. I finished my education, chose my husband (and husband chose me), bought a house, had some children (not that there’s […]

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

I didn’t see that coming. Imagine visiting your neurologist and, when you get there, they can’t wait to hear what fun things you’ve been up to since your last appointment. “So, Mrs. Robijn, tell me, what fun things have you been up to? What?!! Only two? In those four months since our last appointment? Hm, not […]

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