Locked-in Syndrome

Welcome to my Website

If you are reading this, then either I sent you here or you know somebody in my condition. I had a stroke on the 21st September 2000 which resulted in a quite rare condition known as Locked-in Syndrome. It is rare because people don't usually survive - in my country (Malta - that has about 370,000 inhabitants) I am the only one and technically it is a thrombosis of the basilar artery. This artery supplies oxygenated blood to the brain-stem and as a result of a blood clot blocking the artery, the brain-stem dies. This part of the brain connects the brain to the spinal cord, so the end result is paralysis. In my case my heart kept beating but that's about it - even breathing had stopped.........I was kept alive by a respirator.

This is a bit like Spinal Cord Injury (SCI) but different..........usually people with Spinal Injuries can talk and eat normally......I can't. Also, I can feel everything, which can be a disadvantage : when my bottom hurts because I have been sitting for long, it can get pretty painful. Usually SCI patients (mercifully) don't feel a thing.

I made this site so anyone in my condition can learn how I perform everyday tasks and how I use technology to help me.
NOTE : if you left-click on most of the photos on this site, you will get a full-size version.

As from today (4th Oct 08) the past issues of the newsletter are in htm format and should be correctly displayed in any browser.

In 2007 a movie was made about the true story of Jean-Domenique Bauby who had a massive stroke when he was 43 and resulted in Locked-in Syndrome. In his case he could only blink one eye and yet he wrote a book called "The Diving Bell And The Butterfly" and this movie (directed by Julian Schnabel) has the same title and is based on the book. You can download the trailer or view it.