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Neurology 2003;61:135-137
© 2003 American Academy of Neurology


Brief Communications

ALS patients on TPPV

Totally locked-in state, neurologic findings and ethical implications

Hideaki Hayashi, MD and Edward Anthony Oppenheimer, MD

From the Department of Neurology (Dr. Hayashi), Tokyo Metropolitan Neurological Hospital, Japan; and Pulmonary Medicine (Dr. Oppenheimer), University of California School of Medicine, Los Angeles.

Address correspondence and reprint requests to Dr. H. Hayashi, Department of Neurology, Tokyo Metropolitan Neurological Hospital, 2-6-1 Musashidai, Fuchu, Tokyo, 183-0042, Japan.

Seventy patients with ALS using tracheostomy positive pressure ventilation (TPPV) were evaluated for impaired communication. Severely impaired communication is divided into the totally locked-in state (TLS) and the minimal communication state (MCS). TLS occurred in 8 of 70 (11.4%). In the 33 patients on TPPV for more than 5 years, TLS developed in 6 (18.2%) and MCS in 11 (33.1%). Respiratory management for ALS allows long-term survival if mechanical ventilation is used.




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