Tag: advocacy

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.

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.