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. […]

Read More

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 […]

Read More

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 […]

Read More

Get up and go

He: What’s changed since last week and now? Nothing’s stopping you from going to that business meeting with the Chairman of the Board of Directors at this regional health care organization. He’s your client, isn’t he? Me: Yes, but I’m probably going to burst into tears, he’ll see what’s wrong and then I won’t be […]

Read More

voldemort and parkinson’s. face your demons.

Waiting for the tube in London, years back. Opposite on the wall was this great billboard, promoting lipstick. Which in itself is an alien concept to me, if it wasn’t for the powerful copy. It said something along the lines of: Face the Boss. Face your ex. Face the undertaker (ok, made that one up). […]

Read More

Sobsnivelsniff

You bump into a friend, they ask how you’re doing, and snap – you burst into tears. You don’t want to cry. Not again. Because it invariably prompts the question: you’re still having a hard time coming to terms with it, aren’t you – isn’t there someone you can talk to, a psychologist or something? […]

Read More

Gimme Hope

I was the undercover patient at the ParkinsonNet Jubileum Conference in the Netherlands, browsing the respective exhibition stands from the various providers of tools, applications, therapies, medicines and medical know-how. I spoke to health care professionals, listened attentively to Bas Bloem and other scientists, watched videos of patient testimonials, and read about the latest promising […]

Read More

Movie

What do other people know, that I don’t? Everybody appears to have seen the movie, all of it, every scene. Even the parts that were later cut. And the bloopers. Ah, and the bonus material about what might happen if…. the audience shivers, brrrr, imagine having that condition! Can you pass the popcorn please, come […]

Read More

Afraid

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 […]

Read More