Locked-in Syndrome

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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 - I was only 38 - 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 400,000 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.

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.

Over the years, some people (4) have made LIS the subject of their Thesis. Unfortunately these people are all Italian and therefore their work is all in Italian....I was going to translate their work to English, but then abandoned the idea, so if you don't understand it, maybe you could use one of the many on-line translation services.

The first was Francesca Forgione back in 2009 followed by Domenica Capuano, Anna Galbo and Sonia Guerrieri. I was involved (via email) together with Severino Mingroni - an Italian man also in my condition. You can read their thesis by downloading it - Forgione, Capuano, Galbo or Guerrieri. All are in pdf format and if you don't have a pdf viewer, you can get it here.

For now this website is only in English but I will be doing the Italian translation and will put it online as soon as it is ready. It will no longer be available in French or German.

Per ora questo sito e' solo in Inglese ma faro'la traduzione in Italiano e la mettero appena e' pronta. Non sara' piu' in Francese o Tedesco.

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