AKITA – Notes left by a farmer who lived for 33 years with the muscle-wasting disease known as ALS have been compiled into a book, giving voice to the personal experience of someone living with the affliction.
Shigeru Matsumoto, a former head of the Japan Amyotrophic Lateral Sclerosis Association, wrote his journal using a computer-aided writing system that transcribes characters by sensing electronic signals from slight movements of the jaw.
The notes, printed on more than 10,000 sheets of paper, were found in a box at his home in Ogata, Akita Prefecture, after he died in 2015 at age 83.
Matsumoto’s widow, Rui, 87, describes them as “the words of his life.”
The journal was privately published as a book titled “Ore wa Iki-nuita yo” (“I Got Through My Life”).
“I hope the book will be read by many (ALS) patients and their family members,” Rui Matsumoto said. “I want them to live and look forward without feeling discouraged about the future.”
The journal manages to maintain a positive tone despite the many challenges Matsumoto faced, including being forced to use a ventilator.
In one entry, the farmer writes: “I rode a combine for the first time in 10 years (today), cropped rice with groaning noise.”
He then goes on, “My arms and legs have lost their mobility, I cannot eat or talk, but I’m cropping rice with my heart. … I’m happy, happy, screaming banzai (to express the joy) in my mind.”
Matsumoto, a native of Kochi Prefecture, moved to Ogata in 1966 when he was 34. The area was at the time a model for large-scale rice farming.
In the early 1980s, he began feeling unwell and was diagnosed with ALS when he was 50.
“I fell and was unable to get to my feet in the middle of the rice paddy where I was spraying pesticides,” his wrote in the journal.
ALS damages the nervous system and causes a gradual decline in physical mobility, but patients retain full intellectual function. There are an estimated 9,400 ALS patients in Japan.
“I lamented that my life had ended and all I would be able to do from then on was rely on a machine,” he wrote.
But he did not lose his vigor for life.
“As I have become used to (the situation) I have expanded my range of activities and I’m now surprised with a new discovery that I still have joy in my life,” his journal says.
Seven years after his ALS diagnosis, he decided to forego hospital care and moved back to his home, a decision uncommon for ALS patients at the time.
In a show of great dedication, his wife learned all the necessary nursing skills in three months, such as how to change his nasal tube and how to run a respirator and the machine to remove sputum, according to his notes.
Despite his physical limitations, Matsumoto worked for the ALS association and became head of the body in 1987.
Serving in the post for 16 years, he took more than 50 trips across Japan to meet medical and municipal authorities to seek better treatment and public assistance for people with ALS.
Matsumoto also helped establish regional branches of the association.
“I want people to understand more about ALS,” he wrote.
His notes were painstakingly written, each taking days to complete.
Koichi Hirota, who was Matsumoto’s main doctor, wrote in the book’s introduction that his patient made a great contribution to improving the level of home care for ALS patients.
As for the longtime caregiver role that was faithfully carried out by his wife, she said it was bearable because she took it a day at a time.
When her husband first came home, she said there were financial difficulties such as purchasing a ventilator. But now such people can get some public support.
“Utilizing that, anybody can take care of an ALS patient at home,” she said.
To purchase a copy of the book, contact Noriko Araya at the ALS association’s branch in Akita Prefecture at 018-834-5077.
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