Until the 1960s and the advent of L-dopa, the lot of a person diagnosed with Parkinson’s disease was a pretty miserable one. Typically six years from diagnosis to death, and six rather unattractive years at that. Progression was largely untouched by the drugs available which, in any case, carried a significant cognitive payload. Six years in which to put your affairs in order, squeeze the last pleasures from one’s former life and come to terms with one’s imminent extinction. No wonder my mother, who had nursed end-stage Parkinson’s patients in the 1940s and 1950s sobbed when I told her of my diagnosis.

But the introduction of L-dopa in the early 1970s changed that picture significantly. And although it did not cure the illness it delayed the deterioration to some extent. A life expectancy of six miserable years became 12 years, 18 years and beyond. Parkinson’s patients who anticipated a brief agonised exit suddenly found themselves with time on their hands. And although that single observation alone is not enough to explain the rise in advocacy over that timeframe, it is most certainly a contributor. It is my firm belief that medical conditions with relatively long post diagnosis lifespans are the breeding grounds for advocacy.

Let me explain. I believe that the best patient advocacy is the product of a relatively long post diagnosis lifespan and a poor and deteriorating quality of life. In essence two interacting facets. A rapidly terminal illness, such as one of the many cancers, affords the sufferer little time to do anything much beyond write their will, say goodbye to relatives and set their house in order. It certainly doesn’t allow sufferers to build a useful programme of patient advocacy. Conversely, conditions with a long lifespan but little deterioration, although providing the timeframe necessary for advocacy, to not have the necessary burden of illness.

Both a lengthy period of illness and a significant and increasing burden are necessary. In these conditions (Parkinson’s, Multiple Sclerosis, cystic fibrosis for instance), it is not surprising that patient advocacy flourishes. We should be grateful for that. And in many respects we are. Advocacy is our way of drawing people without the condition into our world, of helping people understand what we go through. Because otherwise “if you haven’t got it, you don’t get it” as a fellow patient once said to me.

Advocacy serves its purpose, if its purpose is considered to be that of raising awareness among the general public, attracting funding and thus increasing the amount of research. Laudable aims but somehow still not a very high bar. For many Parkinson’s advocates this is not enough. We expect to be involved in all aspects of the condition from diagnosis, through research and the lived experience, to quality-of-life and end-of-life issues. Nothing falls outside our perceived remit.

And, as outlined in the previous article, therein lies the problem. We have fought and achieved roles in most aspects of research and care. We have learned much along the way and have been inspired by many brave and imaginative people. But where we have failed, and perhaps it is simply a victim of our success to date, is in transferring that knowledge and understanding from one parky generation to another. Knowledge accrued by one generation seems somehow to be taken to the grave by that same generation. Either they have failed to communicate their learning to the youngsters with the energy to run with it or, equally likely, the newer generations simply never knew what had already been established. So much is lost, as Rutger Hauer memorably said “like tears in rain”.

We have to find a way to value the knowledge of the older generations. We have to find a way of recognising their value as, in essence, the giants upon whose shoulders we stood. I don’t believe we are currently doing so. I believe so much of that knowledge is lost. As the condition progresses, it inevitably diminishes our capacity to communicate. Whether we recognise it or not, eventually our diminished powers of communication somehow ossify the knowledge gained over a lifetime with the condition. The older generation watches as the youngsters make the same mistakes, hit the same brick walls.

Each new generation rediscovers past learning, often without realising. They fail to notice the giants watching their every move with interest. And the giants, paralysed with the burden of the years, let each firebrand pass without speaking up. This is a problem. If we do not, collectively and individually, pass on our knowledge as we approach the autumn time, that knowledge and learning will be lost. We need to find a mechanism of ensuring that the baton is passed in a systematic and helpful way. But how?

It would be warming to believe that it can be left to individuals to buddy up with advocates from different generations, mentoring the younger whilst still listening to our forebears. It’s an appealing notion but not one that is readily scalable. Relationships like that build organically – they cannot be imposed. Success is predicated on the basis of personal relationships. Ultimately this is insufficient to carry the baton forward in a meaningful way. What is needed are stories – the basis of a collective knowledge.

Let me explain. Many of the more ancient cultures still surviving today owe their culture to the oral tradition. In many cases, written language appeared later. But it was the oral tradition – spoken stories – that was passed from generation to generation.

Before the influx of voluntary (and some less voluntary) immigrants to Australia in the last 300 years, the country was populated, albeit sparsely, by aborigines for over 50,000 years. And during that time, the aborigines maintained a lot of their cultural identity through repeated stories of a mythical prehistory. This prehistory, The Dreamtime, was handed down orally from father to son over more than 1000 generations.

In North America, Native Americans lived under the eye of Wakan Tanka and practised animistic rituals to appease their multiple deities. Again these traditions were oral, passed among tribes and down lineages. Nothing was written down in anything we would consider written language.

Even in Europe, with its widespread intermingling of populations through trade and war, there are traditions. We owe our understanding of the great Nordic sagas to books. But it should be remembered that these stories predated their littoral transcription.

The point I’m making is that the oral tradition is a powerful means of communication and information transfer down the generations. The ancient peoples were unencumbered by the need to write down stories. Consequently their oral traditions are all the stronger.

This is telling us something. Something both informational and sociological. We have to be able to transfer knowledge of the elders to the youngsters. I take that as read. We have to find a way of passing the baton that negates the generational mistrust prevalent in modern society. We have to find a way in which the youngsters will wish to hear the wise words of the elders. Not only will this prevent us reinventing the wheel but it will also surely strengthen the sense of community amongst people with Parkinson’s.

In essence we need to find a way, a more modern means, of storytelling within our community. We need to create great blocks of knowledge and wisdom that can be recapitulated and built upon. This is how we pass the baton.

Better Patient Advocacy. 2: Passing the Baton