Clinical Review

The patient's journey: Living with locked-in syndrome

BMJ 2005; 331 doi: http://dx.doi.org/10.1136/bmj.331.7508.94 (Published 07 July 2005) Cite this as: BMJ 2005;331:94
  1. Nick Chisholm, patient1,
  2. Grant Gillett, professor of medical ethics1 (grant.gillett@stonebow.otago.ac.nz)
  1. 1 Dunedin Hospital and Otago Bioethics Centre, University of Otago Medical School, Dunedin, PO Box 913, New Zealand
  1. Correspondence to: G Gillett

    Introduction

    This is the story of Nick, who has lived with locked-in syndrome since 2000. His narrative is interspersed with information on his condition and a commentary on the clinical and ethical issues that arise in locked-in syndrome.

    Nick's story, in his own words

    This is a story of my experiences since a terrible accident. I started the story in hospital and then added to it over the years. I had my accident on the rugby field on 29 July 2000 about 2 00 pm, just before the ball was thrown into a line-out. It just felt like a simple case of concussion (everything went blurry). I staggered to the sideline, the coach asked me “What's wrong”? He said I told him I just felt sick and to put me back on the field in 10 minutes. Then I collapsed and was rushed to hospital (unconscious) in an ambulance with the staff struggling to keep me alive.

    After three days, doctors thought I was all right and were going to send me home. Then it started: I nearly collapsed again, taking a shower (I became extremely dizzy and lost my balance). For days, the specialists didn't know what was wrong with me. My girlfriend at the time went mad at the specialists to do something.

    The diagnosis

    After six days of going in and out of seizures, after what seemed like all the tests known to man, they said I had had several strokes of the brain stem and then one major one, which left me with the extremely rare condition known as locked-in syndrome (box 1), not able to do anything.

    Start of the journey

    Words can't describe the situation I have been left in—but this is as close as I can get it: an extremely horrific experience that I wouldn't wish on my worst enemy. The incredibly immense frustration levels at …

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