¡Basic Information
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
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 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
ŸPreparing for a power-cut by a ventilator user --setting (https://www.youtube.com/embed/6ZIknruMijA)
ŸPreparing for a power-cut by a ventilator user --try out (https://www.youtube.com/embed/sAXPL-f7AeE)
ŸMasuda Boston Challenge -1 (https://www.youtube.com/embed/VHToIbkDkug)
ŸMasuda Boston Challenge -2 (https://www.youtube.com/embed/1QoNBSxb7H0)
ŸMasuda Boston Challenge -3 (https://www.youtube.com/embed/CYB90le-_Tg)
ŸMasuda 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.