Parkinson’s. Big data, small problem.

big data small problemEveryone wants to remain healthy. If you – heaven forbid – suddenly become unexpectedly sick, then you naturally want regain your health as quickly as possible. Surely your doctor, therapist or goodness knows who can do something? Surely all those pharmacists can rustle up some effective pills? If you visit your GP with a throat like sandpaper, then it’s a trifle disappointing when he says that there’s nothing he can give you – it’ll clear up all by itself. No cough mixture, no antibiotics, no nothing. Hm.

Healthcare is a right, after all.

You expect quite a lot from your healthcare service, your doctor, your therapist. Healthcare, medication, therapy are basic human rights after all. Not that I’ve personally done much to contribute. Well, except for that Master’s in Health Care Management. Oh, and by religiously paying my health insurance premiums on time of course.

But I seem to have pulled the short straw. Just like all those other 50,000 Dutch citizens lumbered with Parkinson’s. There is no cure, and the only way is backwards, not forwards.

 

The Big Data Einsteins of neuroscience

I often find myself thinking: why don’t they just invent something, those Einsteins of neuroscience? How long have they been working on it, for goodness sake? It’s about time they got their skates on, otherwise it’ll be too late for some of us. I assume the neuroscientists think the same. I mean, they’ve trained for it. I haven’t.

 

Wait a minute… I’ve also trained for it in a way! I’ve been following my personal Parkinson’s course 24×7 (without so much as a coffee break) for several years now. I know all there is to know. And when a healthcare professional points out a typical Parkinson thing, because they think that I don’t know about it yet, believe me, I KNOW. It’s no more than giving a name to something that I was already well aware of and had even incorporated into my life.

 

I don’t know – the neurologist’s famous last words

But I know plenty about my particular Parkinson’s variant. It’s unique, there’s only 1. Which means that there’s another 50,000 variants in the Netherlands alone. Its course is rarely predictable. Or so we think. Yet we don’t actually know – the patients don’t know, the neuroscientists don’t know. Indeed, all those neurologists with dozens of Parkinson’s patients under their care are repeatedly forced to admit: I don’t know.

 

How about some big data research?

So, some scientists thought, how about doing some big data research? Yeah, good one. Let’s skip the validity of the research questions for now, or the impossibility to measure how brave the average Parkinson’s patient is. That’s if you can find 650 willing participants in the first place. If you can maintain their privacy. And verify that your test methods are scientifically sound. That requires some serious thought. But please don’t ponder too long, because we’ve got nothing until you make a start. Neither the researcher nor the patient.

 

I haven’t signed up …yet

So why haven’t I signed up for that RUMC research yet? Well, I’ll tell you why: because I would so dearly love to take a coffee break from my 24×7 Parkinson’s every now and then. Because carrying a Verily device with me 24×7 for two years on the trot would constantly reinforce my Parkinson’s. That that thing would record my brain and heart activity, fair enough. Runkeeper also does more than you think. But the fact I’d visibly be confronted with that Verily wristband, when they’re constantly telling me to try and forget Parkinson’s once in a while… well, I consider that a small problem with big data.

 

But perhaps I’ll sign up after all. Because I wouldn’t want to think it’s down to me that those scientists can’t find anything. And, if they do find something? Then at least I’ll know that I’ve personally given big data a small nudge.

 

One thought on “Parkinson’s. Big data, small problem.

  1. Well said, Mariette….I empathise, truly! It’s like the ‘wearables’ – every PwP may have a ‘unique’ variety, but is this just another distraction to deflect from the truth that our Neuronoggins can’t find a cure? As least half the reason for that is they can’t collectively join forces, sad to say.
    But I applaud your courage – need more of this!

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