Pushing at the frontiers of Clinical Care
I am a scientist by training and, rather than just accept my deterioration, I want to use myself as a ‘human guinea pig’ to try to help not just other MND sufferers but many other people with physical disabilities, whether triggered by Nature or by Accident.
My plan is that, by staying ahead of the curve of my disease and at each stage harnessing cutting-edge technologies and medical knowledge as well as fresh thinking unconstrained by yesterday’s assumptions, I can not only optimise my own quality of life as I’m slowly trapped in my own body, but also provide an opportunity to test some interventions that may be relevant to all people with profound physical disability.
I’ve set myself the challenge of relentlessly pushing at the frontiers of Clinical Care for as long as I’m still around, even if I’m Locked In; for want of a better name, I think of it as my ‘Radical Disability Project’. It is a mission to apply to MND (and ultimately, to Disability in general) as much innovation – and common sense – as I can.
I suspect that revolutionising Clinical Care isn’t so much about research funding, it’s about attracting the right rebels with the right passion to Break the Rules and to make the impossible and the uncontemplated – practical. In that spirit, I’m perfectly happy to donate my body to science while I’m still alive!