Please don’t be premature with your improvement expectations of patients presenting with locked in syndrome.

As explained in Part 1 of my story, it was like waking up inside my own coffin. I could feel, think, hear and see normally, but can move absolutely nothing. Even more frighteningly, imagine not being able to give a physical signal or blink to show that you are completely aware of yourself and your environment. I suffered a massive, sustained stress migraine, according to the junior doctor but ended in a huge brainstem stroke and ‘locked-in’ syndrome.
That was my hell at just 39 years of age in February 2010. Nine weeks in ICU unable to do anything. The indignity; the pain; the boredom; the anxiety; the fear of dying; the separation anxiety from my young children which almost destroyed my ‘fight’ completely. Not knowing the next time a therapist or nurse would ‘look into my eyes’ to see if I was trying to communicate something, which gave me so much chest pain, I wondered if it was a heart attack?
If only the medics knew how much I wanted to be back at home with my three children, to walk and run again. (I had been a 70-mile a week fell runner.) I was written-off, which spurred me to prove the negative-thinking, expectation-lowering medics wrong. My neuro physiotherapist was incredible and I will always thank her much for working so hard with me.  I was a very challenging, rule-breaking patient like Marilyn Monroe famously once said, ‘If I’d observed the rules, I would never have gotten anywhere!’
Over 450 times, seven-days-a week as part of my rehab I would ‘will’ a different part of my body to move, move further and for longer than it had ever done. I was obsessed with my own predetermined daily, bite-sized goals. I allowed myself a 10-minute break after each set of 40 repetitive exercises. I did my exercises in addition to my three hours a day therapy sessions. This applied to my dysphagia, limb movements, swallow, speech, eating, walking upstairs etc. So absolutely everything!
Left toe
In fact, therapists at my rehabilitation unit said that I pushed them harder than they pushed me. I was the ultimate self-management case study, even before it became an NHS buzz term! It was, in effect, Teasell’s repetitive, frequent and intensive approach put into practice. But I would also emphasise the need for early treatment (after my subsequent charity advocacy work). I could not always communicate my drivers, my needs, my goals, so friends and family needed to try to fill in the gaps on my behalf.
Grid II communication system

Grid II communication system

Your job as a therapists is to ‘know’ your patient, and that can be hard with this condition. Rather than give up on someone like me, please equip them to be the best version of themselves.  Whatever you do, don’t lower patients expectations of improvement!


Running Free Breaking Out Of Locked in Syndrome