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Shigeyuki Shimamori

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last update:20170928

■Background
Cover of the Monthly J-novel Born in 1967, Kushiro-shi, Hokkaido.
After graduating from Kyoto University, worked at the Ministry of Foreign Affairs. Diplomatic career includes Japan-US relations and the United Nations.
In 2001, the year when terrorist attacked in the U.S. on September 11, I was belonging to the office in charge of Afghanistan, and took part in the International Conference on Reconstruction Assistance to Afghanistan in Tokyo.
At the age of 41, during mission in India, the sign of ALS came out. After working as a head of Central Asia and Caucasus Division during the conflicts in Georgia, I quitted the job.
April 2016, wrote a short mystery novel "Intelligence Cooperation" using the eye-gaze input system, and wined the Special Jury Prize of Tokyo Kita-ku, Uchida Yasuo mystery award.
In 2016, became director of the Japan Amyotrophic Lateral Sclerosis Association.
Believing that "ALS will be treatable in the future," I endeavor to promote research to find a cure for ALS from a patient's point of view.

■Medical History
2008 There was the sign of ALS. After coming back to Japan, diagnosis was confirmed.
Left office ten days after the diagnosis, began to stay home with wife receiving home care.
November 2009 Recorded my voice to preserve.
The spring of 2010 Learned the outline of the way to use of the alphabet board from a staff at home nursing agency.
The summer of 2010 A home-visiting rehabilitation therapist rent a piezo pneumatic sensor switch.
2011 Had tracheotomy surgery. Wearing a ventilator 24 hours, I lost my voices.
Summer of 2011 Asked the lab named Hearty Ladder to make the connector between a switch and a personal computer.
Autumn of 2012 Learned the way to ring a nurse call with a foot pad.
Summer of 2015 The fingers stopped moving and I began using biting switch.
Winter of 2015 Began using eye-gaze input system.
* At the present, I am relying on a caregiver who had been a pinball game programmer about computer-related matters.

■Life at Home
One day
23:00 to next morning 7:00 Night shift of a caregiver
7:00 to 10:00 Stay with my wife
10:00 to 11:00 Personal Care (bathing or bed bath)
11:00 to 13:00 Stay with my wife
13:00 to 18:00 Stay with a caregiver
18:00 to 23:00 Stay with my wife

・This is the example of a day of which caregiver stay longer (Friday). Other days of the week, caregivers stay shorter.
・More than 10 hours, I stay only with my wife.
・The main partner of communication is my wife. Next are caregivers who stay in the afternoon about 5 hours.
・I use Nursing Care Insurance for the elderly: level 5, and Visiting Care for Persons with Severe Disabilities (based on the Act on Comprehensive Support for Persons with Disabilities): 508 hours per month. I began using Visiting Care for Persons with Severe Disabilities after having tracheotomy surgery, but I now think I should have used earlier.
・At the beginning, the hours for Visiting Care for Persons with Severe Disabilities were 248 hours. I negotiated with local government and gained extra hours.
・Basically, the care manager contacts with the home care agency (under Nursing Care Insurance for the elderly), and coordinates assistants.
・In addition, university students come from the agency which is managed by ALS patient during the weekend. They had learned one-day training course to get qualified for suctioning and visiting care for persons with severe disabilities, and take care of me at the weekend.
・Once a year, I stay hospital for my wife's respite.

The communication method
Low-tech High-tech
Method Combining signs like mouth movement, eye blinks and the alphabet board. Personal computer
My burden The highest concentration is needed and get tired easily. It is possible to input at one's rhythm.
Reader's burden Also the highest concentration is needed for collaborative work. Just check the screen.
Convenience Use no equipment to convey messages The setting takes time (If get used to, it is around 15 minutes).
Usage At the time of going out or when a personal computer cannot be used, like bathing at home. At the time of being home, or when going out and participating in a meeting.

The communication method 2
using personal computer
 the biting switch
1. At home, I put the personal computer on the bed table, without using special equipment. It is easy to set up. 2. I move a cursor by the eye-gaze input system, and click by the biting switch. In the photo, I put two tubes. The left tube is biting switch and the right tube is saliva ejector.
the foot pad
 the swith on the brow
3. In addition to the personal computer, I use the foot pad to turn on call sounds. 4. During the night, I remove the foot pad and put the switch on the brow, to turn on call sounds.
communicating in hospital room the photo taken by ORIHIME
5. I had participated in a party with my friends using a robot ORIHIME as another self, during a hospital stay for family respite. The photo on right side is taken by the robot ORIHIME. I flew over the hospital room.

■Works
  • Shigeyuki Shimamori 20160415 "Intelligence Cooperation." The Monthly J-novels, May 2016, Jitsugyo No Nihon-Sha.
  • Shigeyuki Shimamori 20161122 "For the society where ALS patients can live with" at National Meeting of Patient and Family 2016.
  • Shigeyuki Shimamori 20170513 "Patient's point of view: Expectations for multidisciplinary care" at ALS Symposium “For the multidisciplinary clinic in Japan” in Toho University.
  • Shigeyuki Shimamori 20170614 "Reasonably happy life and expectations for nursing and health care." Training Courses for home nursing care of c patients with intractable disease
  • Shigeyuki Shimamori 20170722 "Toward laughter and a dispute…" at the Seminar of communication support for chronic illness patients in Miyazaki.
  • Shigeyuki Shimamori 20170730 "Regaining myself through robotics--possibility is infinite." at The Japanese Association of Home Care Pharmacies.


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