In this workshop we sought to deepen understanding of this issue while presenting the narratives of their own experiences people who are actually living with LIS painstakingly spelled out letter-by-letter in response to our survey. This calls into question whether living on a mechanical ventilator with LIS is truly worse than dying. In his introduction to LIS, Professor Mima Tatsuya presented contrasting data showing that while 70% of survey respondents who were unable to move their limbs but could communicate using their eyes (LIS) answered that they were happy when surveyed, 56% of healthy medical students and healthcare providers answered that they would prefer to die if they were going to have long-term LIS. In the explanation of purpose that followed, I touched on the fact that in some Western countries the rate of use of mechanical ventilation with tracheostomy by ALS patients is very low, and ALS patients do not live very long. In her opening remarks at the start of the workshop, Ritsumeikan University Vice President and Professor in the Graduate School of Core Ethics and Frontier Sciences Matsubara Yoko introduced the research group for technology for living with ALS she herself had established in 2007 and positioned this workshop within the broader context of Ars Vivendi studies. Image 2: Snapshots of workshop participants. We received responses from eighteen people with LIS and presented some of our results at a workshop entitled “Locked-in State as Everyday Life: Interim Results of the Society-with-Coronavirus Program” on March 28th. In the survey, in addition to questions about the everyday experiences of people with LIS, in light of the spread of COVID-19 we also asked how this everyday life was being affected by the pandemic. To enable the smooth participation of people with LIS who operate a computer or tablet with line-of-sight input or a piezo switch, the page set up for the survey on the Institute of Ars Vivendi’s website (see Image 1) was designed to allow for everything from the giving of consent to the submission of answers to be done with one click (apart from entering names and addresses). For this online survey, we disseminated a link through social media such as ALS groups on Facebook and put out a broad call for participants who recognize themselves as having these sorts of symptoms. In some cases LIS is caused by something that has happened in the brain, while in others it is the result of a motor neuron disease such as amyotrophic lateral sclerosis (ALS) or Guillain-Barre syndrome.
Here I will introduce some of the research related to one of the selected topics, “Sustainable Care in a Society with COVID-19” (project leader: Mima Tatsuya, Professor in the Graduate School of Core Ethics and Frontier Sciences).įrom February 3rd to March 7th of 2021, our research group conducted an online survey on the experiences of people with a condition called “Locked-in Syndrome (LIS).” LIS refers to people who have severe quadriplegia and communication disabilities but retain unaffected cognitive function. Twenty-one topics were selected from among eighty-one proposals from a wide range of fields within the university ( ) and research on each of these topics began in September of that year.
Shut in syndrome japan full#
In 2020, a year full of chaos caused by the spread of COVID-19, Ritsumeikan University launched “Society-with-Coronavirus Research Program – Visionaries for the New Normal -” to look at society after the COVID-19 pandemic.
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