"Everyday Life with a Home Ventilator and Communication Aid Devices: A Case of Japanese Patient with ALS"
Yoko Matsubara
Workshop on The Mechanization of Empathy in Health Care
January 24, 2009 Ritsumeikan University
last update: 20160118
I'm now carrying out a project of simple and low-cost real-time communication web conferencing using an instant messenger with ALS patients. Mr. Wanaka, who is a leader of the regional association for ALS patients, was diagnosed with ALS in 1992 and chose tracheostomy mechanical ventilation in 2000. It was not until he had suffered from ALS that he began to use his PC on his wife's advice (He was a fish dealer before he had suffered from the disease). Now Mr. Wanaka makes best use of his PC and Voice Output Communication Aid (VOCA) and joins the patients' advocacy movement.
A touch switch on his head was made by Mr. Hisazumi who is also an ALS patient and suffering from numbness of hands and legs. Mr.Hisazumi was an engineer and now he voluntarily supports many patients visiting their bedside and makes a variety of switches for controlling assistive technology device in do-it-yourself fashion. In the future BCI/BMI may replace these switches. However close support to users of assistive technology will continue to be necessary because of the changeable conditions of the patients and their home care.
REV: 20160118