* This is a text data of the slide material I usually use at a lecture. PDF slide data is here.
Steps to life at home and independence
Living together with my wife (and henpecked).
My combat outfit ;) -1
The white tube around my neck is connected with the respirator.
Usually I put my respirator at my bedside. Today it is under my wheelchair.
My combat outfit ;) -2
One tube in my mouth is a saliva ejector and another is a biting switch.
I put the mouthpiece to prevent biting my tongue.
My combat outfit ;) -3
The tube branches off from cannula is connected with the Automatic Phlegm Extractor Device.
Automatic Phlegm Extractor Device
Usually, suction of phlegm is required every 20 to 30 minutes for 24 hours.
It is the burden of care.
After began using an automatic phlegm extractor, the number of suctioning had decreased.
Furthermore, there is no pain of suctioning.
My disease is an incurable disease called ALS.
It is motor neuron disease and I gradually lost my arms and leg movement.
Since my tongue is also paralyzed, I cannot speak or eat.
Eventually my muscles control breathing is also paralyzed, and breathing becomes impossible. ... and I will die.
However, I feel itchiness and pain. I feel joy, anger, humor and pathos.
No cure for ALS is known.
Resulting immovable body throughout life, it is a merciless incurable disease.
It was at the age of 60, the signs of ALS came.
I lived healthily until then.
But 12 years ago, my arm collapsed and became impossible to use chopsticks.
When I walked, I was teetering and fell down.
I was told the name --ALS.
This is a doctor's explanation:
ALS is an incurable disease. There is no way to do.
When illness reaches an advanced stage, the body stops moving at all.
You become bedridden.
As for the last, breathing also become impossible.
Although there are some people who wear a respirator, most people do not.
That is because, you have to be bedridden throughout life, and you can't work. It is also cost a lot and burden for someone who take care of you.
Nevertheless, once you wear a respirator, it cannot be removed.
That is a terrible story.
"I will not use respirator."
I thought that it would be quite a future.
However, the progress was quick, and within half a year, I had difficulty swallowing and eating food, and at the same time I felt like stifling.
In order to ease breathing, I wear BiPAP.
BiBAP is non-invasive positive pressure ventilation. It helps breathing from a nose and a mouth without carrying out a tracheotomy.
However, even though wearing BiPAP, the degree of suffocation getting severe day by day, and I became nervous under the terror of stop breathing.
At such time, the doctor remined me "you will not use a respirator, won't you".
That made me deeply depressed.
The pain of stuffiness was more than imagined.
It was so hard.
I am going to die?
So painful. But I would like to live.
When my energy and will was failing, my daughter gave me a letter.
Live and watch over your grandchildren’s growing up.
All of my family encouraged me to use a respirator to live longer.
I decided and told my doctor that "I will have tracheotomy surgery and use respirator."
It had been one year since the diagnosis of ALS.
May 2006, Wearing Respirator
At last, I was released from stuffiness.
But the joy of living did not last longer.
Do I have to be bedridden all of my life?
A fateful meeting
The person who changed my life with respirator was a director of a rehabilitation hospital.
When I asked "I would like to take a walk, not just be bedridden all the time",
The doctor answered, “come to my hospital and rehabilitate to be able to use a wheelchair!"
At that time, I noticed that one can use a wheelchair even though you are connected to a respirator, and the tear of the joy came into my eyes.
Although there was a pain in the whole body at the beginning of rehabilitation, the joy of going out is greater than that.
Furthermore, the nurses, physiotherapists, and occupational therapists were very cheerful, and I became able to smile again since the diagnosis.
Scenery of rehabilitation
"My daily life" came back to me little by little.
I cannot move by myself,
but if my helper puts me in a wheelchair, I can take a walk and going out.
I cannot talk by myself,
but If you use the alphabet board, we can communicate each other.
Pilgrimage --realizing my dream
One year after leaving the hospital, I became able to take part in social activity and travel.
The first three-day trip was to Nachi Seiganto-ji (Wakayama prefecture).
My daily life at home.
Personal Care (Bathing): 3 times per week
Nursin home visit: 4 times per week
House Call: 1 time per week
Home Rehabilitation: 2 times (2 hours) per week
Dental Health Care: 1 times per week.
Ventilator Circuit Exchange: 1 time for two weeks.
Delivery of medicines: 1 time for two weeks.
Cannula Exchange: 1 time for two weeks.
Balloon Exchange: 1 time in per month.
Gastric Fistula exchange: 1 time for two months.
Helpers stay 9-21, every day.
||Personal Care (Bathing)
||Personal Care (Bathing)
||Personal Care (Bathing)
||Dental Health Care
Nursing Home Visit
4 times per week, I have nursing home visit.
1 or 1 hour half for one time.
Vital check, suction, cuff maintenance, mouth care, personal care, condition management, etc.
It is more than ten years since a matured home visiting nurse began coming to my home.
In this way, I owe my everyday life to my doctor and nurses.
Personal assistant's care
Personal assistants do most of the things of my everyday life.
They also provide medical care (suction and gastric fistula care), after taking a training course to get qualified for.
What is personal assistant?
They are helpers specially trained for me.
In order to make their care suitable for me, they are attending to me exclusively.
Generally, it is called "Jisui helper" in Japanese, which means self-recommendation helper.
There are 15 personal assistants for me and most are university students.
Since they are students, they finish the work as my personal assistants when they graduate from their school.
Therefore, I always look for someone who will be my personal assistant.
I always miss them when they graduate, but I believe that the experience they had during being my P.A. would have a positive effect on their future, in their social life.
Operating a personal computer on a bed.
The tube around my mouth is a biting switch to control my computer.
I write E-mail and documents like PowerPoint with it. I can control net surfing or TV channel also.
Of course, I can call someone with the buzzer, and talk.
When I'm in a wheelchair, I use a tablet device.
October 2015, I had the surgery to separate the glottal closure.
The purpose of the surgery is the earnest wish for 12 years: I would like to taste again, and to prevent aspiration pneumonia.
Although having separating surgery...
I taste differently compare to before, because I feel sweetness, salty acidity, bitterness, but I can't smell.
I can't swallow, so I just taste slightly and wash down.
The most favorite is Brandy!
I usually work as an evangelist to let young people know more about ALS.
The most serious problem for ALS patients is being unable to communicate.
Many patients who cannot speak and move, also experience difficulty to communicate.
I have given the patient and the family consultation about communication, the information on a new communication device, and etc. as a member of Japan Amyotrophic Lateral Sclerosis Association.
A scenery of the lesson at a high school or a junior college (2016)
The symposium on communication support for incurable disease patients and the alphabet board lesson.
Where am I? ;)
My grandchildren had grown up.