Locked-in Syndrome

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Locked-in Syndrome (LIS)........probably (like most people) you never heard about it. It is (usually) caused by a stroke, which is a blood clot and in this case, in the basilar artery and this artery supplies oxygenated blood to the brain stem. Since no blood means death of cells, this rather important part of the brain stops functioning. The brain stem is the "connection box" between the brain and the spinal cord, so the end result is total paralysis.
In a fully locked-in patient the only movement left is the vertical movement of the eyes. In my case I can breathe without a respirator, I have some (non-functional) movement in my right arm and hand and (most importantly) I can move my head.

Total paralysis means also that I cannot talk and I cannot chew either, so anything I eat must be soft food or liquidised or soluble in saliva (like chocolate, for example).

When this happened I was in Italy, which further complicated matters - an air ambulance was necessary to bring me back to Malta, my country.

This condition leaves all the senses intact, so until I went in coma (which lasted 4 days), I was hearing what was going on around me. When I arrived to the hospital in Cremona, one of the doctors said "this one is gone" !! Here are some things to keep in mind about me :

My body temperature control does not work 100% and I cannot shiver but it doesn't mean I don't feel cold - if my body hair is on end, then I am feeling VERY cold. To control temperature, the body contracts the blood vessels in the arms and legs and the extra blood is used to keep the vital organs warm. To do this the brain uses special muscles around the blood vessels and in my case these don't work.

Naturally communication is rather difficult (but not impossible) and over time we (me and my wife) perfected it - for a full explanation click on communication. I also use my head movement to drive my wheelchair and to use my computer.

My inability to talk does not mean I am deaf or forgetful....yes, I do recognize people and there's no need to shout. Also, there is no need to wave your hands around as if I am deaf - I can hear perfectly well.

Being quite a rare condition (I imagine) not much research is being done on it - there are much more people with (for example) Spinal Injuries and research with stem cells looks promising, plus there are a host of other diseases that (for now) are incurable.

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