When I was diagnosed with Parkinson’s, I was relieved to be told that it was not terminal and that it was possible a cure could be identified before too long. Fifteen years later, there has been no real marked improvement in the treatment of the condition let alone a cure. Parkinson’s may not be a “killer” but it can destroy lives. It advances unremittingly, slowly retracting the gift of movement and rendering you ever more incapacitated and dependent on others. It becomes, in a sense, more akin to a life sentence in the solitary confinement of your own inert body; a vigil of tortuous waiting until the full stop.
The start of the Parkinson’s journey does not seem so dramatic. The medications seem amazingly effective and for a while you cling to the hope that this efficacy can be sustained; that you will be the one who can pull off the Parkinson’s equivalent of “The Great Escape“, Ultimately though, all are ensnared in the barbed wire and returned to the “cooler”. No-one recovers their freedom.
When you live with Parkinson’s from day-to-day and the medication honeymoon period is over, the stakes become higher. The impact of the condition is all-encompassing, such that for many it can call into question the very reason to exist. When power of communication and control of movement are lost, so are dignity, sense of purpose and identity. The rate at which the bottom of the Parkinson’s chasm is reached depends largely on one external variable: medication. To the person with Parkinson’s, medication can assume the same value as water. The very ‘stuff’ of life.
Unlike water, a drug therapy is not a naturally occurring phenomenon. It is a product invented by scientists, manufactured by pharmaceutical companies, regulated by government agencies and distributed by doctors. As someone with PD, I depend on the performance of these groups. My future is quite literally in their hands. Yet despite an umbilical link to the progress made by such agencies, I have found that as a patient it has taken a very long time to break through the barriers of language, credibility, knowledge and prejudice to become accepted within such circles. Communication with patients, it seems, is the domain of the clinician alone. The impression is sometimes that the old-fashioned rule for children has been adopted for the patient population; they should be “seen and not heard “.
The absence of the patient voice is a silence which exists to a greater or lesser extent across the board in the health sector, but is perhaps no better illustrated in Parkinson’s. Parkinson’s predominantly afflicts people who are inclined, or compelled because of symptoms, not to air their misgivings, publically at least, about past, present or future treatment of their illness. We all too often either choose to live in ignorance or place our absolute faith in the medical community to provide an exemplary service. In doing so, we are condemning ourselves to a life over which we have little influence. We are reduced to having no control over our bodies, no means to regain it and no voice to make an impact on the single most important element affecting how we feel from day to day.
The medicinal products we use are not retail goods purchased for frivolous personal enjoyment. They are instruments of survival. It is surely ludicrous then that we have markedly more control and influence in the manufacture, distribution and use of things that are relatively meaningless to us. I find it astonishing how circumstance and convention have conspired to render the patient’s role so passive in a matter so fundamental to quality of life. It seems we now live in a world where the minor details have become so important as to blind us to what really matters.
Health is the principal constituent of our ability to live our lives. Common sense suggests that a complete transfer of all responsibility for its management is distinctly unhealthy and, in fact, defies all reasonable logic. Without our participation in the process, those involved in the development of new medicines are bereft of some essential ingredients relevant to any product. Without the inputs of experience, focus, passion and user feedback the very concept of effective supply and demand is undermined. People with Parkinson’s are the only true stakeholders of drug development and yet their stake remains out of reach for some and completely remote for the majority.
Progress in science should flow organically. Fine wines are inspired as much from a connoisseur’s enthusiasm as from the grape itself. In the same way, it is the patient’s voice which is missing to focus, to invigorate and to instil urgency into the research agenda.
Perhaps this is part of the reason that scientific progress itself seems to suffer the same incapacity for forward motion as we do. Perhaps if the process of drug development itself has Parkinsonian symptoms then it is us, the people with Parkinson’s, who can break its shackles and set it free.
Access to the world of drug development is not so easy for us patients though. It is an exclusive club and one which historically has been an uncomfortable arena for patients to communicate their views. To some, patients are perceived as an amorphous group characterised by their desperation and emotional outbursts. We are perceived as being too close to the subject to be objective. But for me, it is our proximity to our illness which makes it both proper and essential for our views to be taken into consideration. Why should the levels of risk and efficacy associated with new medicines be determined by those who are not stakeholders in either? Should a parched man in the desert be denied water at the oasis for fear of water-borne disease? Who then should evaluate the risks in the determination of whether or not to proceed with a particular drug treatment through to the clinic? There has to be a happy medium where both points of view can and should be taken into account.
Of course, I accept that there are other forces at work here and that the patient voice is only one small part of the jigsaw. All the parties involved in drug therapy provision have their own set of risks to assess. Pharmaceutical profits, litigious patients, over-analytical and expensive clinical trials with poor outcome measurements, transparency of information and inordinate amounts of red tape all combine to straight-jacket the endeavours of the pioneers of medical science.
The consequence of these and other factors is the word “safe” having ever more stringently defined parameters; parameters which make a mockery of the seriousness and risks involved of having the illness itself.
The medical world needs to wake up to the information revolution. Its paternal stance has no place in 2010. It must recognise the voice of its consumers or it will become an industry festering in bureaucracy, politics and stagnation.
But we the patients are equally culpable. We need to challenge the perception that we are passive entities to be instructed not consulted. No patient should be patient. We can be a significant force – a resource empowered to influence our own destiny.
Those of us who can still act must do so. It is our duty not only in terms of our own lives but also those of the wider community. We have to discard our misconceived perceptions of inferiority and promote a seamless transition between science and society. For this to be achieved, we must break down the barriers of language, perception and medical convention by collectively embracing the rest of the Parkinson’s community. Change will not be quick but it can only happen if we have a seat at the table to express our insights, experiences, hopes, determination and sense of focus.
Drug development in Parkinson’s is not simply a question of efficacy and safety. There is a third dimension: URGENCY!! Only we can inspire this 3-D vision and now, at last, there is a momentum which suggests that our involvement will be welcomed by a new generation of healthcare professionals in the Parkinson’s community.
I have learnt from personal experience and in working with ‘The Cure Parkinson’s Trust’ that there is no more compelling method of focussing scientists and pharmaceutical companies; of cutting through regulatory red-tape; of changing perceptions among the general public and of galvanising medical institutions, than to be someone out there who not only knows about Parkinson’s but can also brazenly flaunt it and convey, clearly, what it really means to have it. There is no better driving force for progress in Parkinson’s than us, the people who live with it. Together we can accelerate the pace of progress and ensure the wealth of promising science that is out there does not flounder haplessly in the mire of due process but is allowed the necessary space to flourish, to fulfil its potential so that it can be propelled forward to make a significant impact on our lives.
An urgent warning about rytary...
GREAT NEWS! Intra-Nasal FGF-1 Human Trials have started! WATCH video! Tremor reduced!
Perspective on the Gut and Parkinson's Disase
Three distinct brain circuits in the thalamus contribute to Parkinson’s symptoms
