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

Dis-disruptive Innovation would be very welcome

parkinson's innovationsDisruptive is quite a good word. A word that actually sounds similar to what it means. Not quite like rupture, which is usually bad news. Disruptive is better. Any idea what it really means? Well, the verb disrupt means: to interrupt the normal flow of business, to prevent something from being able to follow its normal course.  (more…)

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How I missed Parkinson’s early warning signs

signsJust who, exactly, did get them right and in good time, those early warning signs of the latest earthquake? The scientists? Nope. The locals? No, unfortunately not them either. Did anyone even pick up on the Japanese tsunami in the first place, never mind in time? Right. So, in comparison, missing the early warning signs of Parkinson’s is an easy mistake to make. The early warning signs of Parkinson’s are but a tiny tremor to the system, when compared to the tectonic tremors of an earthquake. We tend to miss both. (more…)

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Campagne. 3 dingen.

Campagne is heftig. 1. Kun je nagaan hoe het zou zijn als er geen medicijnen & researchers bestonden. Daar is dus geld voor nodig. 2. Wat je ook van de campagne vindt, ze DOEN tenminste wat om een cure te vinden. 3. Hoofdrolspeler Joan, dank je wel voor de koffie en de complimenten op m’n nieuwe mountainbike. Want weet je wat het is: we kunnen dan wel parkinson hebben, maar dan wil je nog steeds lekkere koffie en een mountainbike met waanzinnige vering. Nog even los van die medicijnen en de hoop op A Cure.

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The best doctor doesn’t know how I feel

Maatwerk ouderdomspakThank goodness! My neurologist doesn’t know what my sluggish hand feels like. He has no idea how it feels to crawl out of bed, stiff as a board. Neither does my occupational therapist. Yet, despite not knowing what it feels like to have parkinson’s, my neurologist does know how to help me. That’s why he’s a doctor. (more…)

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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…

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