[Home support for ALS patients--a new method of communication]

The motor nerves are selectively damaged in amyotrophic lateral sclerosis (ALS), and motor paralysis progresses, but the sensory and intellectual levels remain normal to the end. However, the mean survival time after the onset is said to be 3 to 5 years, and we are faced with the question of what support is needed for ALS patients to spend their remaining days at home in a meaningful way and maintain their human dignity. This report concerns a case of ALS in which we have been providing home care for 5 years and still are aiming to improve the patient's QOL. The patient is male and was 57 years old at the time of diagnosis. A tracheostomy was performed in September 1994, and use of a mechanical ventilator was started. The patient was capable of phonation at the time home mechanical ventilation was instituted, but beginning around August 1998, 24-hour mechanical ventilation became necessary, and phonation became impossible. Communication deteriorated as a result, even between husband and wife, and the patient sometimes even became frustrated and panicky. When communication with a personal computer was started in November, 1999, the patient began to write numerous messages, and an improvement in QOL was observed.