Patients with amyotrophic lateral sclerosis (ALS) can lose all muscle-based routes of communication as motor neuron degeneration progresses, and ultimately, they may be left without any means of communication. While others have evaluated communication in people with remaining muscle control, to the best of our knowledge, it is not known whether neural-based communication remains possible in a completely locked-in state. Here, we implanted two 64 microelectrode arrays in the supplementary and primary motor cortex of a patient in a completely locked-in state with ALS. The patient modulated neural firing rates based on auditory feedback and he used this strategy to select letters one at a time to form words and phrases to communicate his needs and experiences. This case study provides evidence that brain-based volitional communication is possible even in a completely locked-in state.
Persons in the completely locked-in state (CLIS) suffering from amyotrophic lateral sclerosis (ALS) are deprived of many zeitgebers of the circadian rhythm: While cognitively intact, they are completely paralyzed, eyes mostly closed, with artificial ventilation and artificial nutrition, and social communication extremely restricted or absent. Polysomnographic recordings in eight patients in CLIS, however, revealed the presence of regular episodes of deep sleep during night time in all patients. It was also possible to distinguish an alpha-like state and a wake-like state. Classification of rapid eye movement (REM) sleep is difficult because of absent eye movements and absent muscular activity. Four out of eight patients did not show any sleep spindles. Those who have spindles also show K-complexes and thus regular phases of sleep stage 2. Thus, despite some irregularities, we found a surprisingly healthy sleep pattern in these patients.
Patients in the transition from locked-in (i.e., a state of almost complete paralysis with voluntary eye movement control, eye blinks or twitches of face muscles, and preserved consciousness) to complete locked-in state (i.e., total paralysis including paralysis of eye-muscles and loss of gaze-fixation, combined with preserved consciousness) are left without any means of communication. An auditory communication system based on electrooculogram (EOG) was developed to enable such patients to communicate. Four amyotrophic lateral sclerosis patients in transition from locked-in state to completely locked-in state, with ALSFRS-R score of 0, unable to use eye trackers for communication, learned to use an auditory EOG-based communication system. The patients, with eye-movement amplitude between the range of ±200μV and ±40μV, were able to form complete sentences and communicate independently and freely, selecting letters from an auditory speller system. A follow-up of one year with one patient shows the feasibility of the proposed system in long-term use and the correlation between speller performance and eye-movement decay. The results of the auditory speller system have the potential to provide a means of communication to patient populations without gaze fixation ability and with low eye-movement amplitude range.
Patients in completely locked-in state (CLIS) due to amyotrophic lateral sclerosis (ALS) lose the control of each and every muscle of their body rendering them motionless and without any means of communication. Though some studies have attempted to develop brain-computer interface (BCI)-based communication methods with CLIS patients, little information is available of the neuroelectric brain activity of CLIS patients. However, because of the difficulties with and often loss of communication, the neuroelectric signature may provide some indications of the state of consciousness in these patients. We recorded electroencephalography (EEG) signals from 10 CLIS patients during resting state and compared their power spectral densities with those of healthy participants in fronto-central, central, and centro-parietal channels. The results showed significant power reduction in the high alpha, beta, and gamma bands in CLIS patients, indicating the dominance of slower EEG frequencies in their oscillatory activity. This is the first study showing group-level EEG change of CLIS patients, though the reason for the observed EEG change cannot be concluded without any reliable communication methods with this population.
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