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Budapest is fast asleep. So late is the hour that even the castle and basilica, so beautifully illuminated earlier, seem also to be dormant. And when a city like Budapest sleeps, so should you.

By Jon Stamford on Oct 29, 2012

It's 4:30 on a Friday morning and a time when all God-fearing types should be tucked up in warm beds. And, if not asleep, then doing nothing more than counting sheep or waiting for the dawn chorus. They certainly shouldn't be on Skype. But here I am, at the Marriott, and despite what must be the most comfortable bed in the world, I am wide awake. And on Skype.

Okay, I'll back up a bit. I've been invited to give a plenary lecture on innovations in e-health at ISOQOL 2012. And my role here is quite specific -- to deliver a patient perspective on health monitoring, quality of life and the tools that patients use to manage chronic illness. There are four of us on the bill -- Jan Geissler (@jangeissler), Paul Wicks (@PaulLikeMe), Martha Grootenhuis and me.

Jan Geissler was the founder of the European Patients Academy on Therapeutic Innovation, or EUPATI (@eupatients) as it is rather more commonly abbreviated. EUPATI Paul Wicks is the research and development director of Patients like Me (@patientslikeme) while Martha Grootenhuis is a head of psychosocial research at the Emma Children's Hospital in the Netherlands. These are big hitters by any standard, at the forefront of patient engagement, e-health, participatory medicine and quality of life research. And each are clearly backed by legions of other team members.

And then there's me. Awake at 4:30 AM and trying to knock my slides into some semblance of coherence. Do I talk about the difference between research instruments and patient friendly apps? Where do I put the Willie Sutton joke in the running order? And what do I think their response will be when I tell them, the great and the good of quality of life research, that they need to listen to their patients more. How is that going to go down? Especially coming from one patient. No wonder I'm awake wondering when the organisers will finally realise their mistake, discreetly usher me aside and explain that there has been a misunderstanding. They were expecting somebody different. They were expecting somebody altogether more high-powered. My LinkedIn page seems to support this, with several views from the conference organisers in the last few days.

Actually, I'm pretty confident of the material and my reason for being there. This early-morning paranoia has more to do with last night's overexuberant courtship with the minibar. My brain is still trying to unravel the earlier competing charms of Hungarian Pinot Noir and a weapons grade espresso from room service. Note to self: this is not how to start the day.

Skype is busy -- the Parkinson's world never sleeps. We are shadowy insomniac figures, drifting from chat room to chat room in the early hours. I share my screen with Sara in Stockholm while I run through the presentation. She likes the Willie Sutton joke but thinks I'm too gentle on the neurologists. Another friend messages me on Facebook agreeing with Sara and, before you know it, my laptop is tweeting more than a budgerigar on Benzedrine. I turn the sound down. It's still dark outside.

A shave and a shower and the world is a better place. I even look halfway human. A quick scan through my e-mails sorts out my agenda for the day. The page proofs from a letter to Lancet Neurology require my immediate attention. The journal editor wants to put it in the December issue, but only if I can have the proofs back to them within 24 hours. No problem. Sorted.

I've neglected my blog Slice of Life recently. It's all very well having a blog about life with young onset Parkinson's, but sometimes I just don't have the time. And blogging should always be fun. To be honest I have got as much from my blog as it is taken. I enjoy writing and it is a huge pleasure when an e-mail from Outer Mongolia -- no, really -- plops onto the electronic doormat, telling me that the latest blog about earwax had somehow made their day.

Joking aside, blogs are important. Traditional means of communication between physician and patient were unidirectional. Physicians neither invited nor expected comment. They provided a service. You were the recipient of that service. End of relationship. For some physicians, patient blogs can be unsettling, a challenge to their traditional patrician models of health care delivery. A reminder even that patients will be heard one way or another. Of course, I've never really been a "banging on the door" sort of advocate. My blog is not a soapbox as such. Ranting about access to medicines is not really my forte. Just telling the readers about daily life with chronic illness is a tightrope itself.

But the blog will have to wait. Parkinson's Movement is broadcasting its first webinar on Wednesday and there is still the small matter of editing it. And filming it. And scripting it for that matter. We have five days and I will be in Hungary for half of those. The advertising material has gone out through our networks and I quickly check that the Facebook page and Health Unlocked pages are up-to-date as well. It's all systems go.

And it's all systems go here in Budapest, as that second espresso works its way through the system. The phone rings. It's the concierge with my early-morning call at 6:30. I'm just about ready for bed.

The plenary goes down well in the afternoon. They listen receptively to my message -- that patients are the ultimate stakeholders in health care and that informed, educated patients have a place in participatory medicine. After all, if you want to know about a patient's quality-of-life, just ask them. Or, as the bankrobber Willie Sutton put it, when asked why he robbed banks "Because that's where the money is".

 

About Jon:

Jon is a scientist and writer living in Kent, with his family, two hens, a dog, a tortoise and eighteen guinea pigs (don't ask). He was diagnosed with Parkinson's in 2006 at the age of 49. With a mortgage to pay, a job to hold down and three teenage children to bring up, it would be fair to say that Parkinson's was a spanner in the works. After the initial shock, Jon set about making the best of it. Facing a much less certain and comfortable future, he reacted in the best way he knew -- with humour. Jon writes a blog called ‘SLICE OF LIFE’ -- it is a journal and a journey - of family life, with all its challenges, triumphs: joys, sorrows and laughter. Above all laughter and a determination to find humour in each day, Parkinson's or no Parkinson's. So, what of the Parkinson's? The bad news is that Parkinson's is incurable at present. The good news is that it won't kill you. So let's get on with life! That’s Jon’s philosophy.