What then must we do?

Last week I attended the world Parkinson’s Congress (WPC) in Barcelona. These meetings in general inspire me but this one particularly so. In the past my response has typically been to increase my output in my regular job. That applied when I had a job. But for the last few years I have been functionally and spiritually perhaps in retirement. This particular WPC meeting has lit a fire. But how should I respond to this fire? What is an appropriate means? As was adequately discussed at the recent WPC, there are many different ways of helping and many of those would be considered to be advocacy in one form or another.

I have been an advocate in one form or another for much of the last decade and perhaps a little beyond. I was one of the cofounders of the late PARKINSON’S MOVEMENT, this organisation representative of its time but now largely part of the fossil record, swept away by PD Avengers. I jointly founded a group entitled PARKINSON’S INSIDE OUT, a think tank of specialists all of whom had Parkinson’s. A good, if short lived idea. I made a series of videos with Eros Bresolin, PARKINSON’S MOVEMENT WEBINARS or pod casts before such terms were bandied about. I made another darker set of videos entitled THE DARK SIDE OF PARKINSON’S, with prize-winning cinematographer Anders Leines, addressing some of the more taboo subjects within Parkinson’s. Well received critically but still awaiting funding to produce a second series. And I’ve recorded or been recorded a number of Interviews on matters parkinsonian. I have published a half-dozen or so papers on patient -related research in addition to my papers and reviews in my former life in the laboratory. And I have written, for many years now, a blog, at least in part relating parkinsonian matters. These, in turn, have formed the backbone of the book series entitled SLICE OF LIFE.

Okay, I haven’t found a cure for Parkinson’s yet and, no longer working in the laboratory context, am unlikely to. But I have been a member of several patient advisory panels on new therapeutics, and so on. I also review papers as well for various journals and I’m on the editorial board for a couple of them. So I’ve not been idle! I can do stuff. I’m still, in part at least a scientist
This reads a bit like my curriculum vitae or résumé. I suppose in a manner of speaking it is. Because I’m presenting myself here to you and I want you to help me to help you. Does that make sense?
I want to help, I really do. And I’m emerging from a comfortable retirement to throw myself again into advocacy in some form.
But what form? I don’t know yet but it seems to me that it must be somewhere where I can make a difference. Somewhere that plays to my strengths. Although I can rattle a tin as well as the best of them, I don’t think this is my best use. Okay, what is?

Let’s be honest – you saw this coming, right? My reflexes are a little slow these days and I will doubtless have some ring rust to clear before I’m able to be helpful. So let’s step forward. I would like to ask you to tell me where you think I can best help. For instance there are some examples:

1) write a major book on Parkinson’s, for a patient audience or wider. You tell me.
2) audiovisual aids on Parkinson’s?
3) a major motion picture? Featuring Mel Gibson as me.
4) a newspaper column detailing the day-to-day vicissitudes of Parkinson’s
5) making a nuisance of myself in a laboratory again
6) helping people without experience to write high quality grant applications.

These are just a few ideas of the top of my head. I’d be perfectly happy if you weren’t interested in any of these but have other plans that I could help you execute. To return to what I said above briefly, whatever I do has to be impactful and effective or I might just as well go back to watching afternoon television. So think of it as a mercy mission, saving me from endless reruns of Supermarket Sweep.

So please email me with your ideas to re-purpose me! The email address below should be obvious but I have quoted it in this form simply to avoid being auto-spammed by Filipino brides, llama sanctuaries and dodgy stem cell vendors.

j underscore a underscore stamford at yahoo dot co dot u k. If you read it aloud it makes sense

“What then must we do?” Asked Tolstoy in his book of the same name.

You tell me.

Words of a WPC veteran

I have attended all except the first WPC meeting in Washington. I went to Glasgow in 2010, Montréal in 2013, Portland in 2016 and Kyoto in 2019. And, barring the unforeseen, I shall be in Barcelona in a month’s time. Each meeting has provided me with new information (both as a scientist and as a person with Parkinson’s). Each has stimulated new trains of thought, new ideas, new projects and passions. In some way or other, each has been enriching for me.

But this year more than any other, as I have felt the weight of old father time on my shoulders, I feel I have an obligation to try and pass on what I’ve learnt as a patient over the years.

WPC is overwhelming. If this is your first such conference attended, it is easy to be thunderstruck by the sheer scale and breadth of science on offer, the number of different approaches to self-management, and the friends you will make along the way. I met people in Glasgow 13 years ago that I value among my closest friends to this day. It is no exaggeration to say that I am still here because of their friendship and support. And I hope, in some small way, I have helped them. So how do you get the most out of your time at WPC? You can’t do, see or hear everything (more’s the pity). You have to be selective to get the best out of the meeting. And believe me you want to get the best! So here are some thoughts in no particular order.

1) DO YOUR HOMEWORK! You will get much more out of the meeting if you put an element of planning in place beforehand. Work out when you will arrive and leave and how the programme maps to those timings. The problem with parallel sessions is that you often want to be in two places at the same time. You have to prioritise and the first day of the conference is not the time to do it. Work out as much as possible the key sessions that you really want to attend. Don’t be distracted. Mark up your program.

2) TAKE NOTES. I have often relied on my memory but, over the years, it has become apparent that this is unreliable. Besides, by the end of the conference, there will be so many ideas swirling around in your head that you will not remember who said what when and why. Even if you just jot down the name of speakers and the odd line about what they said, it will make all the difference in the weeks that follow.

3) GO BEYOND YOUR COMFORT ZONE. Sometimes it makes sense not to attend the obvious sessions with familiar titles. Challenge yourself some of the time to learn about areas that are new to you. Not all the time, obviously. But try to factor in some time for the unfamiliar.

4) ASK QUESTIONS. It can be daunting to put your hand up to ask a question. But don’t be put off. This is exactly the kind of conference where you can ask questions without fear. Speak up and be heard! But don’t personalise. This is not a forum for addressing your own treatment. Keep the questions general.

5) QUEUE FOR COFFEE. You will be surprised how much people talk in the coffee queue! The science and the ideas do not stop when the applause dies away! Always keep your ears open.

6) LAY OFF THE SANGRIA! Don’t forget, jetlag and alcohol are a poor combination. Try and hold back during the opening reception! You’ll thank me later!

7) COME AND TALK TO ME. One of the very best parts of these conferences, for me, has been making new friends, hearing what makes them tick and exchanging views.

8) ENJOY YOURSELF. If you do nothing else, this will justify your attendance and fuel your attendance at future WPC meetings. Go for it.