Tag: advocacy

Signing off

For the last seventeen years I have had Parkinson’s (PD). Yes, I know I probably had it before diagnosis. It’s not a competition. There are no yardsticks to compare each other’s suffering. Simple fact – some get it worse than others. I consider myself one of the luckier ones. But it has been one of the enduring agonies of this condition that I have watched friends fall by the wayside. The journey is littered with the lost, comrades in arms who drew a weaker hand than I. Few things are more heartbreaking than to see close friends tortured beyond repair, their voices fading into the long silence.

Some shade into darkness quicker than others. Some are tortured by the private agonies of dystonia, others dance to that ridiculous self-parody of walking that we call dyskinesia, forced to endure the cruel laughter and humiliation, ultimately too weary to explain to the disinterested. Even for those untouched by such vicissitudes, there are still further miseries in store.

Okay I have had some of these in moderation – by which I mean sufficient to recognise the symptoms but too little to gauge their current path or project a future trajectory. I fall into that category – I have the full range of symptoms, but expressed at a relatively low level such that, beyond a general low-level malaise, none of the symptoms of PD have taken top billing, nor even a starring role. Like I said, I feel lucky. I feel empathy, sympathy or whatever for those in the majority who suffer more than myself.

The last seventeen years of PD have yielded some eight books, loosely based around life with the condition, but often veering into less focused tracts on politics (sorry, I can’t apologise enough), music, philosophy and so on. Some of you bought my books and I thank you for that. Writing is, both at its best and worst, a lonely way to occupy yourself. Short of book signings, press releases, chat show interviews and so on it amounts to solitary aeons at the keyboard. Those sequinned soirees among the glitterati are the province of the JK Rowlings of this world, not hacks like myself. Anyone who was ever going to read my books has done so by now. They will also probably have noticed the same features of my writing, appearing like leitmotifs throughout. And there’s the rub. I have said everything I wanted to say, offered every crumb of advice I could conjure, and cracked every joke I know.

I could carry on, re-treading and re-purposing old ground for what may be a new audience. Not a bad way to spend my time. And, with a little effort, I could easily delude myself that this still represented a service to our PD community. Truth is it doesn’t.

For me, PD is a journey but not in the way you might think. It is no mere progression and intensification of symptoms, though those are a parallel path. No, the journey as such is the transformation of blind optimism into realism. The journey essentially of acceptance.

For many within the PD community, acceptance is a dirty word. I know plenty who might argue that acceptance amounts to an admission of defeat. I don’t see it that way. To my mind, acceptance is the realisation that I cannot change everything. Some things will be beyond my ability to alter, whether by healthy eating, medication, exercise and so on. Acceptance for me represents the acknowledgement that energy spent railing against the injustice of PD is not energy well spent. Fighting PD is sapping. In my book, acceptance is a redeployment of one’s resources where one can reasonably expect benefit. In the same way Russia burnt its cities ahead of the Wehrmacht’s approach, prepared to concede ground and better use the resources they had to preserve the country. So it is with PD. Don’t fight the battles you can’t win.

It has taken me some seventeen years to grasp this fundamental truth, to reach this personal nirvana. Acceptance is the path to survival not to defeat. I don’t want to ‘fight’, kicking and screaming against this unseen enemy. There are better ways of spending that energy.

I have written books, given lectures, been part of panels, workgroups and advisory boards. I’ve advocated till I’m blue in the face. I have been a neuroscientist, a researcher, writer and adviser. Sure, others have done more. But I have done all I can. And at the end of the day I’ve put in my shift. I’ve given all I had. And now I want to turn away from writing about PD. It’s time for younger men and women to spell out their agenda, to raise their banners and and to lead their armies.

This, such as it is, is my baton to pass on to you. Run. Run like the wind. There is a whole world out there. Life is the ultimate journey and we never pass the same way twice. Thank you for reading. My watch is ended.

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.