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

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

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

    Nick Chisholm, patient1, Grant Gillett, professor of medical ethics1

    1 Dunedin Hospital and Otago Bioethics Centre, University of Otago Medical School, Dunedin, PO Box 913, New Zealand

    Correspondence to: G Gillett

    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.

    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.

    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 times have eased slightly over the years because of physical and health gains I have made.

    If dying is as painless and peaceful as just drifting off to sleep, then there's plenty of really very frustrating times that at a particular point I wished I wasn't here any more.

    Still, with mind and memory at 100% (sometimes I wonder if it's a good thing or not), external feeling 100%, internal feeling about 30%, although just after the accident I had no feeling. All my senses are normal, if not enhanced (sight and hearing). I'm just left trapped inside this body. All my muscles wouldn't work. Basically I couldn't talk, which went first; then I couldn't walk, eat, or excrete.

    Through a tremendous amount of hard work and perseverance I have gained ever so slowly since my accident and still continue to make gains now (they seem huge gains to others, but they seem far too slow for me—I've got to live through it all), with the much appreciated help and support of others and a copious amount of extremely hard work and sometimes pain.

    It felt like I was in a really bad nightmare constantly for about the first three months. I could only just hear (I couldn't even open my eyes or breathe by myself); without them even knowing that I still could hear, the doctors and specialists in front of me said to my mum that I would die. They even asked my mum if she wanted them to turn the life support machine off after a few days.

    <much more>

  • #2
    treatment for LIS?

    Hi Wise, I was just wondering if there are any treatments for Locked-In-Syndrome? Have doctors become better at diagnosing it? Are there any clinical trials being done to try to help people with this condition?