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

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 research and innovations. All the time looking for that one particular exhibition stand.

As little/much/long/short as possible

The conference focused on remaining as healthy as possible, for as long as possible, with as little help as possible. All to soften the inevitable. For parkinson’s is a destructive disease – your suffering increases, your need for care increases over the years, decades even. It’s a costly affair, parkinson’s. Costly for the care provider and taxing on the patient. The day’s theme was: The Future of Health Care. “And they keep telling me to live in the here and NOW”, I quipped to the care professional next to me. Yet – I still believe that I can do exactly that, simply because care profs spend their days improving my future. Come to think of it, it’s quite overwhelming to find yourself amongst 1500 care profs doing their utmost best to make your ‘Now’ a happy Now.

Gimme Hope

But where was that one particular stand – the Gimme Hope exhibition stand? I couldn’t find it. Although, I understand why. I am well aware of the latest hopeful developments. From stem cell, to vaccinations, to dbs. But, next year, why not bundle all of these ‘hopes’ into one upbeat exhibition stand? Presenting the ‘top-10 hopes’. Or even the top-20, for that matter. With nice music, yummy chocs, great coffee and a fun movie. Of rollercoasters, for example. And hand out Dutch heart shaped sweets, you know, the ones adorned with inspirational texts. Guess what word I would like on mine.

And then: Power

Parkinson’s care focusses on remaining as healthy as possible, for as long as possible, with as little help as possible. As a patient, it feels rather like an impending doom, a fast-approaching hurricane. Well, in fact: it is just that. Yet there’s so much more to it than that: if you have parkinson’s you’re forced to look at the world with fresh eyes. There’s nothing else for it. You have to search for your (sorry for the cliché) ‘primal power’. Your disease propels you into survival mode and you can do one of two things. Either hide under your duvet and cry – and stay there. Or get up and find your (here it comes again) primal power. Which will allow you to take on the world, including ‘petty’ parkinson’s. That’s what we’re going to show at the Power Stand next year. A couple of friendly faces, showing upbeat films of how we get on with things, what was it again, ah right, life, and off we go. Showing what you can achieve and how to harness that primal power (you’re getting used to it by now, eh?) within.

Savouring/Saddening

The tweets that followed the conference were so positive! Many ‘Savoured Moments’ Tweets. Of the conference itself, as well as of the latest advancements. And of our King’s attendance. I thought it was very brave of our King to attend, especially as his own father suffered badly from parkinson’s. Nowadays there’s so much more help available which could have helped his father – that must have been sad for our King to see. But back to those tweets. ‘Savoured Moments’ was trending. Which was nice. After all, that’s what it’s all about. That’s what we need. I personally wouldn’t have sent a Savoured Moments Tweet though, rather a Sad Moments Tweet. Sad, because there is no escaping parkinson’s. Yet. But now, a few days after the conference, my tweet would say:

#parkinsonnet10jaar 1500 healthcare professionals committed to patient care. Next year 2 new exhibition stands: 1. Gimme Hope and 2. The Power of the Patient.

P.S. A couple of days after writing this column, the MJFF released this short film. Pay particular attention to Michael J. Fox’s closing statement…

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