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Hideaki Masuda

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■Basic Information
Hideaki Masuda Year of Birth: December 26, 1943.
Living at home with my wife.

■Short History of Life with ALS
2004 Just after retirement at the age of 60, the signs of ALS came.
The Progress was quick, and arms and legs stopped moving after one year.
February 2006 Start using BIPAP (Bilevel Positive Airway Pressure) and Gastric fistula.
May Had tracheotomy surgery and started wearing a ventilator.
August Started living at home with a ventilator.


■Welfare Program
  • Personal Care (Bathing), Rehabilitation, Technical aids (Electric adjustable bed, lift, wheelchair, ramp, etc.): Nursing Care Insurance for the elderly
  • Visiting Care for Persons with Severe Disabilities (based on the Act on Comprehensive Support for Persons with Disabilities): 987.5 hours per month
    1) Personal Assistants, 2)Visiting Care from the home care agency:about 80 hours per month

    For more information about daily life, please refer to "Steps to life at home and independence".　http://www.arsvi.com/2010/201710mhe.htm


    ■Works
  • Yui Hasegawa ; Hideaki Masuda et al., 09/12/2017, "Achiving Independent Lives for People with ALS Connected to Artificial Respirators through the Process of Accepting Care from Non-Family Members" [PDF]

  • Hideaki Masuda, 06/12/2017, "At Boston" [PDF]

  • Hideaki Masuda, 01/12/2017, "Fighting against Difficulties with My Ventilator", East Asia Disability Studies Forum 2017　www.ritsumei-arsvi.org/en/news/read/id/330%22

  • "A step to independent living with personal assistants" Report of Japan Amyotrophic Lateral Sclerosis Association, Kinki Area No.74　http://www011.upp.so-net.ne.jp/alsosaka/Kaihou_00/k_74/5_Jyouhou/k74Kouen2Masuda.html

  • Hideaki Masuda and Ken Sato, 31/03/2012, "greeting" in GONDO Mayumi & NOZAKI Yasunobu (Eds.) March 31, 2012 Together with Medical Devices --In Order to Live Outside of Institutions, Symposium Report "How Did You Survive the Disaster and Power Outages?: Inviting People with Intractable Diseases. People with Ventilators Living at Home in Fukushima, Report Issued by Research Center for Ars Vivendi of Ritsumeikan University, Vol.18, pp.20-21　http://www.arsvi.com/2010/1203mh.htm

    ■Videos
    ◆Preparing for a power-cut by a ventilator user --setting (https://www.youtube.com/embed/6ZIknruMijA)
    		 ◆Preparing for a power-cut by a ventilator user --try out (https://www.youtube.com/embed/sAXPL-f7AeE)
    ◆Masuda Boston Challenge -1 (https://www.youtube.com/embed/VHToIbkDkug)
    		 ◆Masuda Boston Challenge -2 (https://www.youtube.com/embed/1QoNBSxb7H0)
    ◆Masuda Boston Challenge -3 (https://www.youtube.com/embed/CYB90le-_Tg)
    		 ◆Masuda Boston Challenge -4 (https://www.youtube.com/embed/UYkn5TLhwDQ)


    ■Medical Care at Home
    Weekly Schedule
    Sun Mon Tue Wed Thu Fri Sat
    09:00 Personal Care (Bathing) Nursing Care
    10:00 Personal Care (Bathing) Nursing Care Personal Care (Bathing)
    11:00 Nursing Care
    12:00
    13:00
    14:00 Nursing Care
    15:00 Circuit Exchange House Call
    16:00 Rehabilitation Dental Health Care Rehabilitation
    17:00～
  • House Call: 1 time per week
  • Cannula Exchange: 1 time for two weeks.
  • Balloon Exchange: 1 time in per month.
  • Gastric Fistula exchange: 1 time for two months.
  • Ventilator Circuit Exchange: 1 time for two weeks.
  • Home Rehabilitation: 2 times (2 hours) per week
  • Personal Care (Bathing): 2 times per week



    ＊Produced byChihoko Aoki
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