“I couldn’t talk – but I could feel, hear and smell”

This week in The Guardian, Graham Miles discussed his experience of ‘Locked-In Syndrome’, a rare neurological condition that leaves individuals ‘trapped’ in their own body (http://www.guardian.co.uk/lifeandstyle/2010/oct/23/locked-in-syndrome-body).

Locked-In Syndrome occurs when a specific part of the brain-stem is damaged – often by stroke or haemorrhage. The person is left almost entirely paralysed, but is entirely aware and awake. Some individuals retain minuscule movements, such as deliberate/conscious twitches in a lip or eyelid. These tiny movements can allow doctors and therapists to ascertain that the individual is not in a vegetative state and can help them to establish a rudimentary means of communication.

The prognosis for Locked-In Syndrome has nearly always been extremely poor. Graham explains that he was expected to die and that nurses were told not to prioritise him. His recovery astounded medical professionals.

There have been some notable cases recently of individuals with the syndrome being able to recover some of their pre-injury abilities. In Graham’s case, he defied the odds and 6 months post-stroke was walking with a Zimmer frame. After a year he was deemed to be fit and well enough to look after himself. He notes that, to the best of his knowledge, he has “made the most complete recovery of any locked-in syndrome sufferer”.

Graham talks about several issues in the article that would have required input from a speech and language therapist specialising in neurological conditions. Due to his paralysis, Graham could no longer swallow, speak or breathe unaided. His initial attempts at communication consisted of blinking, and he then moved onto an alphabet board: “I’d blink in response to a finger passed along the letters, and likely responses were listed as a short cut”.

Graham feels strongly that his sheer dedication, persistence and motivation led him to recovery. He mentions concentrating solidly on his big toe for months, willing it to move – and feeling hugely triumphant when it finally flickered. When sensation began returning to his face, he was finally able to find his voice and speak – only one word at a time initially. He also states that at the time of his stroke, the brain’s extra capacity for re-learning skills and the possibility of it developing new nerve connections wasn’t recognised in medicine or neuroscience. His case – and those of other individuals who have made partial recoveries from the syndrome – will hopefully mean that the condition is better understood and treated in the future.