The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless?
OBJECTIVE To evaluate prognosis and recovery in patients with locked-in syndrome (LIS) receiving early intensive rehabilitative care. DESIGN Consecutive sample and follow-up for 5 months to 6 years. SETTING Three rehabilitation centers in Italy. PARTICIPANTS Fourteen patients with LIS who underwent the same treatment and subsequently recovered. INTERVENTIONS Intensive nursing care and intensive and early rehabilitative program, including physiotherapy and respiratory, swallowing, and speech training. For 4 patients, occupational therapy was performed; 4 subjects also had oculomotor training. After discharge, rehabilitative maintenance care continued for each patient. MAIN OUTCOME MEASURES Motor recovery according to the Patterson and Grabois classification, functional improvement, and mortality rate. RESULTS A significant motor recovery was found in 21% of subjects, within 3 to 6 months of onset of the morbid event; complete swallow recovery in 42%; verbal communication in 28%; communication through devices in 42%; effective bladder and bowel control in 35%; and good breathing patterns in 50%. At follow-up, the mortality rate was 14% and only 2 complications were reported. CONCLUSIONS Intensive and early rehabilitation, begun within about 1 month of the morbid event, improved the functional recovery and reduced the mortality rate, which, as reported in the literature, had been 60% about 10 years ago. Further studies are necessary to confirm these data.