most often the onset is sudden and usually without any awareness signal, and the pathology is focused in the basilar tronc ( stroke or trauma. ) , the mortality is very high. the caracteristics of this syndrom
1- motor quadriplegia except eye movement
2- mute
3- conscious markedly awake
4- sensibility present in all the body
5- cognitive skills are normal
6- lesion of lower cranial nerves especilly X, XI, XII.
there are some accessory signs less caracteristic
1- unvolontary respiration
2- unvolontary deglutition
3- inefficiency mastication
4- atrophy of neck muscles
5- gastric dilatation
this state isn’t simple and leaves the patient in tragic situation, I call the tétraplégic state “super handicap” but the locked-in syndrome “poly-super handicap”, and if the first state demands a great service daily and needs four assistants permanently at home the second one needs eight assistants which means it’s much more complicated than tetraplegic state.
when we see a victim of LIS, immediately the diagnosis is made even before the paraclinic’s results, it’s similar a hurricane destroying and swallowing everything leaving behind a desert land in disastrous state.
the words of any language are incapable to fully describe this state, in one word “I live hell on earth since january1985 ” !
I remember, the priest who still visit me, when he came for the first time ( in february 1990 ) and saw me he was shocked and the words were strangulated in his throat, then he run away to his home where he cried for several hours.
If we take an example “the meals”, tetraplegic patients can eat normal foods because they have a well controlled muscle tongue, but patients with LIS have a paralysed one and the mastication is ineffective and need semi-mixed foods ( because mixed foods loose their taste! ) three times every day? ! in the begining it seems too simple and fast but after twenty years it’s very hard and too heavy, especilly if the assitant is ill without any one to take his place.
