Advocacy and caring

Who is an advocate? Is it the middle-aged man, at the height of his professional career, on the stage talking in stark, certain terms of Parkinson’s and all its ramifications? Is it the older woman, standing outside the railway station shivering in the rain, while rattling her collection tin for her daughter? Is it the initially reluctant teenager, going door-to-door with literature and collection tins, trying to square his own actions with his conscience pricked by his shaky granny?

Are these advocates? Do they tick the boxes? Do they increase awareness? Do they support research? Do they help relieve the burden of people with Parkinson’s and their carers? Let me ask you again – who is an advocate? In their own small way each is an advocate. But also none. Because until you understand Parkinson’s, you will always be a surrogate. As a good, now sadly more distant, friend of mine once said “if you haven’t got it, you don’t get it”.

Do I sound ungrateful? Yes, I suspect I do. The man on the stage, the shivering rainsoaked woman and the teenager in his hoodie are all vital cogs in the machinery. Raise money for research because without it, there will be none. No research means no treatment or cure. It means that we will have to explain to our children why people still suffer from a condition we have known for more than 200 years. We will have to say that we did not do enough. And we did not do enough because we did not care enough.

And why did we not care enough? Because, when you bring Parkinson’s home and personalise it, it’s unappealing. It’s granny, fixed expression on her face, dribbling her soup down her smock hearing nothing and contributing as much. Why? Because nobody thought to check the batteries in her hearing aid. It’s the smelly old man in the corner of the nursing home playing solitaire with his pack of cards and quietly sobbing. His daughter no longer visits, declining to change his pads and robbing him of those last shreds of dignity.

Advocacy is easy. And we, the delegates at the 6th World Parkinson’s Congress are a world removed from these dark spaces. While we drink sangria over tapas, renew old friendships and listen to the latest thinking, it’s easy to believe that Parkinson’s is a pussycat and not the ravening beast clawing at our very being. Yes, Parkinson’s is congresses, science and learning. These are still essentials. But let us not forget those other darker realities. Because these are as much a truth as any other.

Spare a thought, amid the hubbub, for those who are not with us in Barcelona. Let’s make a point of remembering why we are here in that great Catalan capital. We are here for one reason only – to alleviate suffering and hasten an end to this pestilence. Remember granny, talk to Granddad, help all.

Leave the conference brimming full of ideas. Ideas that will help expedite the end of Parkinson’s. Think of all those things that could reduce suffering and improve quality of life. Because the reality for many is a quality of life so blighted as to be barely a life at all. And do it with the others firmly in mind.

Never let it again be said that we did not care enough. Never.

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.