In part one (standing on the shoulders of giants), I suggested that, although we had unalienable rights to represent ourselves and our interests, we often fell short of our scientific colleagues by failure to build upon existing knowledge in the way that scientists do routinely. I suggested that we needed to take a leaf from their book. In part two (passing the baton), I speculated that we, as a community undervalued and underutilised learnings of past generations and I made the case for storytelling and the oral tradition. Part three (the dying of the light) presented a major conundrum in the sense that wisdom and knowledge gained through experience was at its strongest in the community least able to express that knowledge. In part four (a new model Army), I tried to clarify what I understood by advocacy and some kind of expanded future role for advocates.
As will been abundantly apparent by now, I don’t have all the answers. But, like the old scientist that I am, I am nonetheless aware that wisdom lies not in knowing the answers but in knowing the questions. In the words of Charles Caleb Colton, a 19th-century English cleric and writer, “examinations are formidable even to the best prepared for the greatest fool may always ask more than the wisest man can ever answer”.
In some respects I am no closer to the answers or the questions. Writing these pieces has been an exercise and an exorcism. I have felt for a long time that patient advocates have important roles to play but that we frequently fail to match qualifications and skills with desired outcomes and objectives.
We stand at a crossroads. Our scientific and clinical colleagues increasingly recognise the value of our input. Whether that is indicative of a seachange in philosophy or simply enlightened pragmatism in the face of such demands by research boards is moot. Ultimately it doesn’t matter. For whatever reason, we have been offered these opportunities and we would do well to grasp them.
But to be of greatest service to our community, we need to bring our “A” game. We need also to expand our definition of advocacy. That’s always assuming we can define it in the first place. Advocates are powerful instruments of influence. All of the research charities in Parkinson’s have advocates in one form or another. Often their roles are focused by the charities themselves but there is a degree to which their roles have a wider, more philosophical dimension. As advocates grow into their roles, they recognise their place in the universe so to speak and evolve into it.
The freshfaced newbies struggling to come to terms with a crippling lifelong diagnosis are, over the span of time, the veterans and broad shouldered giants upon which our knowledge base and understanding are built. We should treasure them. They come in many forms – fighters to philosophers, thinkers and doers, movers and shakers. Each in their own way fitted into the larger jigsaw. Some saw the value of evolution, others of revolution. There were those who wanted to build while others saw demolition is necessary. Some sought to persuade, others to sweep aside. Some become bright beacons to others, rallying points in the darkness. Others flickered and burnt like wildfire, their brilliance sparkling for a brief few moments. Some focused on their own strengths, building edifices of knowledge and experience. Others flitted from flower to flower like butterflies. Some lights are dimmed, while other stars are in the ascendant. I won’t name names. For the most part you know who you are. But I will make one exception.
Of all the advocates who have influenced the Parkinson’s world, none has had greater influence than Tom Isaacs. No, I don’t propose to deify him. He was, and he would admit this himself, an ordinary man driven to extraordinary actions by his illness. In many respects it gave him a purpose in life that he probably felt was missing. I had the pleasure and privilege of working with him for several years. He was inspiring and exasperating. He drove himself hard, aware that he was running out of time (like all of us). He made light of his lack of qualifications when surrounded by highflying academics. But his greatest strength was his ability to get people talking to each other. Oh I nearly forgot to mention – he founded a charity to cure Parkinson’s. He always believed in direct action.
Above all, people listened to Tom. They wanted to hear what he had to say. And I think that therein lies the challenge to all of our senior Parkinson’s advocates. We need to somehow capture what made Tom so compelling. The senior advocates whose voices are quietly fading away are a resource too easily lost for good. They are like the old Jedi, knights of an older order. They knew about non-motor symptoms years ago. But still, each generation rediscovers them for themselves, reinvents that wheel. We talk about young onset Parkinson’s disease as though it was something new. But there were YOPD groups 20 years ago. They came, they went. In the UK, there was Tina Walker, an inspirational leader. She passed on a couple of years ago. And if it were not for voices still alive passing that information on, we would be starting from scratch with yet another wheel.
It’s time for these voices to be heard again. They should never have been forgotten. It’s time if you will for the return of the Jedi.
I want to end with a list. It’s a list of those people with Parkinson’s who have influenced me over the years. Sometimes it can be in small ways, maybe a single thing I remembered. Sometimes these are huge influences in my life. I make no distinction in the list below. There is an inherent danger with lists. A danger that one will upset or antagonise those not on the list. It’s a bit like a wedding. There will always be some relative who fails to make the cut and trumpets their displeasure widely. Nevertheless, I’m going to take that chance and list those patient advocates who I feel have influenced me over the years. I place here the usual caveat that this list is not complete. Nor is it in any order. Some of show me their inspiration on a single issue. Others have run like a leitmotif through my life. All have contributed something to shape my philosophy of what an advocate is, could be and should be. If you’re not on the list, it’s probably my fault not yours. Or you may not have Parkinson’s.
Tom Isaacs, Jean Burns, Anders Leines, Jill Carson, Shel Bell, Gaynor Edwards, Colleen Henderson Haywood, Eros Bresolin, Simon Laverick, Peggy Willocks, Pete Langman, Linda Ashford, Bob Kuhn, Matt Eagles, Vicky Dillon, Claire Lindley, Martin Taylor, Dilys Parker, Brian Toronyi, Omotola Thomas, Jordan Webb, Andy McDowell, Steve DeWitte, Claire Jones, Emma Lawton, Georg Sternberg, Samuel Ng, Soania Mathur, Larry Gifford, Leslie Davidson, Richard Windle, David Jones, John Humphreys, Reidar Saunes, John Rooney, Les Roberts, Stefan Strahle, Ben Stecher, Karen Raphael, Philip Beckett, David Lohr, Jo Collinge, Ryan Tripp, David Sangster, Heather Kennedy, Tom Gisby, Tim Brandt, Laurie Mischley, Sara Riggare, Elizabeth Ildal, Sara Lew, Mariette Robijn, Rune Vethe, Brian Lowe, Dale Sherriff, Madonna Brady, Jenny Nelson, Phil Bungay, Maria de Leon, Nan Abraham, Niki Oldroyd, Michael Peachey, Alison Anderson, Ian Meadon, Tim Hague, Catherine Oas, Rachel Gibson, Mark Whitworth, Alison Smith, Karen Rose, Kelly Sweeney, Hedley Cox, Bryn Williams, Tina Walker, Nan Little, Sheila Roy, Mags Mullarney , Israel Robledo, Alan Lewin, Margaret Owen, John Silk, Karen Green, Ron Rutkowski, Connie Elliott, Perry Cohen, Kirk Hall, Fulvio Capitanio, Bruce Jockelson, Rachel Clarke, Ray Wegrzyn, Tim Bracher, Kevin Krejci, Briony Cooke and Steve Shea.