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

Which disease shouts the loudest?

microfoonParkinson’s. Without a shadow of a doubt. Indeed, we 50,000 Dutch parkinson’s patients are responsible for literally dozens of blogs. If you Google the search term ‘Parkinson’s blogs’ you come up with a whopping 249,000 hits in the Netherlands alone – that’s roughly 5 per patient. The 450,000 Dutch cancer patients on the other hand, are responsible for only 700,000 hits on ‘cancer blogs’, which equates to less than 2 per patient. And, it would seem that diabetics are even less into blogging. In fact, despite the one million or so diabetics in the Netherlands, there are only 425,000 hits for ‘diabetes blogs’, or just half a blog per diabetic. Do diabetics simply make less of a song and dance about things? Or do they have they less time for writing? Perhaps it’s because they’re able to continue working or because diabetes just isn’t as bad as Parkinson’s? No idea. Then there’s the ‘heart disease’ group. You can’t really compare, but I did so anyway. Of the one million people with heart problems in the Netherlands, a mere 8% appear to blog on the topic. Weird.

Hypothesis: those with Parkinson’s shout the loudest.

So, what do we shout about, exactly?

Let’s take a look. I chose a few of my favourite verbs: accepting, fighting, struggling, letting go and dying.

Accepting

I googled ‘accepting your illness’ for each of the four diseases. The results for the Netherlands were as follows: Parkinson’s came out top with 23,300 hits for 50,000 patients, or 47%. In contrast, the one million or so Dutch diabetics were responsible for only 90,000 hits on the word ‘accepting’. Which might mean one of two things: either diabetics aren’t bothered about accepting their condition, or they’ve already gone through that whole acceptance business. Couldn’t be more different to the parkinson’s patient. Cancer sufferers apparently shout less loudly about accepting, with just 161,000 hits made by the one million cancer sufferers in the Netherlands. Acceptance might be too hard?

Fighting and battling

I also threw fighting and battling into the mix. Let’s start with parkinson’s. Man, what a war zone! Some 100,000 hits. Or two per patient. I’m not exactly sure what all that fighting and battling actually achieves, but I’m assuming that these fighters and battlers also to include researchers and healthcare professionals, which gives me some hope. Fighting and battling are not my favourites, because for me, when it comes to fighting and battling; it’s myself that I need to conquer. You have to constantly exercise, train and rest, even if you don’t always feel like it. That’s a fight and a battle in itself. You also sometimes find yourself fighting against your actual illness, against the very concept of a chronic disease that just doesn’t suit you. And, what if I die, in all likelihood still suffering from Parkinson’s – will that mean that I’ve lost my battle?

Diabetics don’t mention this fighting and battling significantly less. Whilst this reveals nothing about the attitude of diabetics, it does suggest that you needn’t be an inherently combative fighter, which saves a lot of unnecessary aggravation. Cancer patients, however, appear to do their fair share of fighting and battling: indeed ‘fighting cancer’ or ‘battling cancer’ results in some 400,000 hits. Still less than us Parkinson’s patients though. Those with a heart problem? Looks like someone else is fighting or battling on your behalf. Tricky, because you cannot compare the disease progression of one illness to another, and well, I’m no scientist on the subject. Not even for the British Medical Journal Christmas Edition.

Letting go

Next comes the out and out winner in terms of disease jargon. Letting go. If you Google ‘letting go of parkinson’s’, you get almost 40,000 hits. Why am I not surprised? Letting go – I’ve got my own personal views on this. They keep insisting that you have to let go. I don’t agree. Letting go just doesn’t exist. Letting go and diabetes? You can count the number of hits on 1 google hand. Those with cancer? According to Google letting go is an important subject for them, but, to be honest, I often wonder if letting go is something the patient actually wants, or whether it’s a caregiver driven thing. Back to parkinson’s: letting go is a popular subject, but hey, I suspect that we Parkinson’s patients have had that whole letting go business drummed into us. Thanks for that.
What is puzzling though, is that not only do heart patients not need to fight; they apparently don’t need to let go either. Could be the all or nothing character of the disease. Anyone got any idea?

Dying

Let’s move onto ‘dying’. Yep, you’ve guessed it – we Parkinson’s patients positively excel in content about dying: 67,500 hits out of 50,000 patients. Not that you actually die from parkinson’s. You do die with it though. A cheerful lot, the parkinson’s community. I don’t suppose it’s because we’ve got 9 lives.
Diabetics and dying is not a frequent flyer on google – despite all sorts of possibly life threatening cardiovascular complications. Understandably and sadly, those with cancer are much more preoccupied with it. Which is terrible enough, without further analysis. A google search on cancer and dying yields 269,800 hits. Heart patients conversely, tend not to shout about dying, neither do their support networks or caregivers. Perhaps it’s all just a little too close to home?

Blog

Now back to that word ‘blog’. Wow – Parkinson’s patients eclipse all others! Why? Is it the endless list of ever changing symptoms and no cure in sight? In itself enough material for a lifetime of blogging. I’m quite partial to it myself, although naturally I consider myself an exception, because I’m a copywriter by trade. And because I sometimes net a particularly big scoop, thanks to a specific topic or word. Such as ‘Escape from Parkatraz’. Definitely not funny, but a scoop nonetheless. Or because that British poet – who I’ve never met and who also has parkinson’s – occasionally writes a poem inspired by one of my blogs. Which automatically prompts yet more writing on my part. But I digress. Where were we? Oh, yes – figures. Type in ‘Parkinson’s blogs’ in the Netherlands and you’ll get an eye-watering 249,000 hits, or 5 per patient.
Diabetes and blogs surprised me: 425,000 hits out of one million patients. Someone should really investigate the causal relationship between the duration of a disease and the number of blogs.
There are also a relatively high number of blogs about cancer. Makes sense. Sharing your personal misery, or perhaps even a triumph over your personal misery, can be important.
Those with heart problems though, clearly don’t blog about it. Their scant 83,800 hits could never beat the Parkinson patient.

Back to the hypothesis on digital parkinson’s decibels

In terms of digital decibels those with (or connected to) Parkinson’s definitely shout the loudest. I was unable to make a distinction between patients and healthcare professionals, so the figures might be misleading. But what if you were only to include actual patients? What would the numbers look like then? Half? The majority of doctors refrain from blogging and tend to avoid social media. It could also be that parkinson’s or parkinson’s medication triggers a lust for writing. Or that we simply crave attention for something that’s been invisible, yet palpable, for so long. I don’t know. Despite having a scientific background, I cannot get to the bottom of it.

All I do know is that Parkinson’s attracts a disproportionate amount of internet attention. All I can hope is that there’s a proportional relationship between digital decibels and a cure. And, if, one day, it ever should become just an ‘ordinary’ curable disease, then we’ll no longer have to blog ourselves silly or shout ourselves hoarse. Would that this was my last ever blog as a parkinson’s patient.

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