Kiyoshi Sugano (alias)

Age:

49 years old (As of August 2019 interview)

Year of birth:

1971

Place of residence:

Chia City, Chiba Prefecture

Relatives living together:

なし

Occupation:

Former company employee / civil engineer

Age of onset:

About 47 years old

Age of diagnosis:

48 years old

Diagnosis:

Juvenile dementia (possibly due to cerebral infarction resulting from cerebral ischemia)

Past experiences

1989年(18)

After graduating from high school, I worked as a local government's technical engineer and was subsequently transferred to and worked for several public organizations.
I married a woman from my hometown and had a child. However, we divorced around the same time I was transferred to Hokkaido.
Over 30 years, I lived an irregular, work-centered life. For example, I usually had dinner after 1:00 a.m. and slept 3 to 4 hours a night.

2013年(42)

While working for a public organization, I collapsed and was diagnosed with transient cerebral ischemic attack (mild cerebral infarction). The doctor instructed me to take a rest, but I was unable to concentrate on resting and receiving treatment because I was engaged in reconstruction assistance work after the Great East Japan Earthquake. I returned to work immediately.
However, after returning to work, I began to feel something was slightly wrong in my daily life.

2018年(47)

I became a university employee through a public-private personnel exchange and left the technical position to take on my first human resources work. However, 3 months later, I contracted influenza. After that, I became unable to understand what the materials I created (e.g., in Excel) meant. Even after creating a manual for myself, I could not cope with it.
I was suspected of having dementia and was hospitalized to undergo an MRI and other examinations. I became completely unable to use numbers and increasingly forgetful.
I became unsure about my commuting route. Although I could take only one JR line to work, I would take the subway by mistake or get off at the wrong station on the way.
I became unable to even endure crowded trains and did not even know what symptoms I was having. I went back to the hospital affiliated with my workplace for examination.

Diagnosis

2019年(48)

In April, I completely retired from the university and the public institution. Unable to accept the diagnosis of juvenile dementia, I did Chinese character and numerical drills in the hope of stimulating the brain to function again.
Examinations revealed that my brain was not receiving enough oxygen. I will be treated with CPAP, and I am hoping that my brain will recover by taking in enough oxygen.
I am willing to work, and my doctor has not told me not to. However, due to my sense of responsibility, I am hesitant because I might not be able to fulfill my duties.
I applied for public assistance in June, and the application was approved in July. In addition, I have been consulting a social worker to see if I could receive a disability pension, but the situation continues to be very difficult.
In July, I was introduced to a community comprehensive support center. Living alone, I have been in contact with the center so that I will not cause any inconvenience if something happens to me.

Joy in life and living

1

Joy that remains with you even after onset

Listening to my favorite music (digitized records and their jackets)

2

Joy that has come to you after onset

Cooking (referring to Cookpad and 3-minute Cooking)

3

Joy that has come to you after onset

General household chores such as cleaning, laundry and cooking. The greatest joy is being able to have free time for myself.

4

Joy that remains with you even after onset

Having interests in many different things. Now that I have more time, I am more willing to take on new challenges.

Something you would like to do in the future

I would like to visit civil engineering structures that I have worked on.
I would like to rent an unoccupied house and live a self-sufficient life in the countryside.
When I recover from my illness, I would like to be able to repair and drive my car, which I have not been able to do because I have not had time.

Challenges in daily living

Physical and mental dysfunctions

Message to the society

It has been a little over a year since I was interviewed. Over the past year, the way I think has changed dramatically, and I am now able to enjoy my time and my life. By facing the disease squarely, I have accepted it and am living in accordance with the progression of my disease. I admit that I have a sense that the disease has progressed over the past year alone, but I am enjoying my life and thinking positively about it through creative ways of living. I always carry a notebook with me and take notes, and to keep up with the speed at which the disease is progressing, I try to increase my knowledge by reading books and editing texts for my former colleagues with a dictionary in my hand.

I feel that this illness has given me a broader perspective outside of work, and, even though I am no longer able to work, I am always thinking about how I can be creative in my daily life and how I can enjoy my life by transforming my way of thinking, even though it is difficult.

Since January this year, I have been keeping a diary to track the progress of this disease (dementia). I think it is important for me to feel what changes (progression?) have come about in the past several months by reading back and writing the diary. I think that one day I will forget to write my diary, but I would like to keep writing until that day comes.
I may be hoping that, after my death, when someone reads it, it would provide some support and help people in the same condition to me live positive lives.