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Ian's Story

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At the age of 19, Ian had a bout of severe gastric flu. During this his body produced antibodies to the infection which then attacked his nerves. Though still able to feel temperature and pain and with normal movement or motor nerves, he lost – permanently – all touch and sense of movement and position sense below the neck. Without seeing where his body was he had no idea where it was. And without peripheral feedback from the limbs, his movement brain could not coordinate movement. He could not move in a controlled way at all, and was effectively paralysed not by weakness but by an absence of any ability to make an ordered movement.

He learnt after a few weeks that if he looked at, say, his arm and thought about moving it then it could move, but that the mental effort to do this was huge. He spent the next 17 months as an inpatient learning to think about movement again. Subsequently he has worked as a statistician and more recently as a disability access audit consultant www.accessmatters.com. More recently he has also set up, with his partner, a company conserving traditional varieties of turkeys www.heritageturkeys.co.uk.

There has been no improvement in his condition, but he has learnt to live with it. He is one of only a few people in the world with this selective sensory loss; through research and filming he knows many of them by name.

He met Jonathan nearly 25 years ago, 12 years after the onset of the neuropathy. They have done many research projects together, as well as cooperating on Jonathan’s biography of Ian Pride and a Daily Marathon (Duckworth, 1991, The MIT Press, 1995). They have also collaborated on a BBC Horizon 'The Man Who Lost His Body' and on Peter Brook’s play, 'L'Homme Qui.' At present they are working on an account of Ian’s life over the last 20 years or so, particularly on his experience of performing neuroscientific experiments in Europe and the US.

Ian Waterman describes his experience of proprioception

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What is proprioception?

Jonathan Cole explains Proprioception.