Communication, in any form, is a two-way process. Even a monologue requires a degree of reciprocation. Without this it is meaningless, just words drifting out into space. The monologue requires reciprocity, an acknowledgement that it has been heard even if it has not found favour from a receptive audience. It is still communication and it is still two-way.
Parkinson’s is a multifactorial neuropsychopathological condition. No, it’s not simply a movement disorder – let’s put that one to bed once and for all. Parkinson’s is an extraordinarily complex condition or series of interlinked conditions depending on whether one takes a holistic or reductionist position. But the reality of the condition, whichever philosophical stance one adopts, is an arduous day-to-day grind. We can philosophise all we like but the truth is simple. Parkinson’s is a nightmare condition, sapping our strength and gnawing at the very sinews of our resilience.
We all know how the story ends. And for many of us, the end of the story is so distant that we may put it aside or prefer not to think of it. We all, to some extent perhaps, mortgage our futures for better todays. The future is unpredictable, the present is at least partly under our control.
But in the same way that the condition has a beginning and an end so too does advocacy. There are few advocates before diagnosis (obviously) and, at the end, equally few. In between, the nature of an individual’s advocacy shifts and changes like the sands. In part this is a dynamic woven out of the individual’s internal disposition, personal circumstances and the wider community.
There have been several attempts to map advocacy roles as a function of time with some models claiming distinct stages in advocacy. Personally I would stop short of that myself but I do acknowledge that they can, to some degree, be helpful in an academic sense. But let me tackle the issue of advocacy at a slightly more visceral level, viewing how it projects onto the post diagnostic lifespan of a person with Parkinson’s. These are generalities and generalisations so please bear that in mind before putting pen to paper on whether I really meant three years and not 33 months. Chances are I didn’t.
Diagnosis, the starting point of the journey (and know that I really don’t like the word “journey” with its connotations of destination) sets the clock running. And often it sends the patient running. To the Internet. To Google and Wikipedia. Fear is swiftly replaced by terror, anxiety by panic, the doldrums by despair. In an afternoon searching on the Internet, one’s future is mapped out. And for the most part it’s an entirely inaccurate picture, conjured of our darkest imaginings.
Some never get beyond this point, abdicating any future pleasure in an orgy of self pity. And it is easy to do. Indeed most of us have probably been there at some point. And if the Internet were the only source of information, that would be the end of it. Fortunately there are other sources of knowledge, much more positive and creative to help guide the newbies. I am talking of course about patient advocates, role models for the community.
And so it begins. Gradually panic, despair and blind terror are replaced by the purifying sunlight of experience, both personal and collective. Patients terrified by the diagnosis at time zero, learn that they can control some aspects of the illness by accrued knowledge. As time goes on, their own knowledge becomes something bigger, something to be shared. This is the transition from passive recipient of information to informer, from freshman to sophomore.
And before long, the informers become critical informers, no longer simply imparting received knowledge but questioning its authority and forming their own wider view of the condition and its manageability. These critical informers often become opinion leaders, taking their views onto a wider national or even global platform. Often they look back on their former bewildered lives in the year or two post diagnosis with a sense of distance.
Opinion leaders set the tone for communities. Their perspectives on the condition and its context can have huge influence for good or bad.
As time progresses, apathy, the most pernicious of all parkinsonian symptoms, takes its toll. Gradually the informers and opinion leaders fall away. You have to remember of course that the position and status of the opinion leaders is often a reflection of the timespan of their own illness. By its very nature, the condition will have progressed much further in these individuals than in the newbies. The giants may still be there but their voices are quieter. Where once they roared like lions, now they whisper.
As I said before, herein lies the conundrum. The point at which advocates have most to impart is the point at which their capacity to do so is most compromised by the simple day-to-day struggle for survival. And that’s not an exaggeration. No matter how brilliant, persuasive and important, it’s hard to do anything much use when it takes an hour to get dressed, to eat breakfast and to answer emails. Then it’s lunchtime followed by physiotherapy, exercise or whatever. There simply aren’t enough hours in the day.
I should declare my perspective at this point. I have had the condition 13 years. I don’t regard myself as a newbie any more. Nor do I regard myself as one of the giants with broad shoulders. I’m somewhere in the middle. I look up to the giants with the same admiration as ever. But now I have to cup my hands to my ears to hear what they’re saying. And I watch the brightest and best of the young sophomores building their own communities.
It was ever thus.
The most enthusiastic, the most energised and driven are the ones building the future for Parkinson’s advocacy. And they are building it in their own image, a young image. This is all well and good but neglects the vision and knowledge of the giants. And although the numbers are changing, the needs of the older Parkinson’s patients are just as important as those of the young onset Parkinson’s patients (YOPD). As someone with YOPD (I was diagnosed at 49) but now older (nearly 62 since you ask), I am acutely aware of the separation of the two schools. I’m not sure whether I have 1 foot in each camp or no feet in any camp.
As I said earlier, it’s all about passing the baton. And I believe that oral testimonies may well be the route by which the baton is passed. But if it was that simple, I wouldn’t be writing. But there are more than one baton. And it’s not always clear who is holding But of course the real question is which baton and who is holding it.
Many readers the first two pieces in this series have felt that I am disparaging of their efforts and blame them for the number of wheels being reinvented. Actually, I don’t. I don’t believe that they are singly to blame. I feel that the giants are every bit as culpable. Although their voices may be fading, they still have a wealth of knowledge to impart. And like Rumsfeld’s unknown unknowns, only they can know the full depth of knowledge.
It is time for them to rage against the dying of the light.