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"Steps to life at home and independence"

Hideaki Masuda
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last update:20171127

* This is a text data of the slide material I usually use at a lecture. PDF slide data is here.

Slide 1
増田英明   Steps to life at home and independence


Slide 2
  Introduction

Hideaki Masuda
Living together with my wife (and henpecked).
October 26, 1943 Born in Nagoya
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.


Slide 3
口元周辺の写真   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.


Slide 4
  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.


Slide 5
  My combat outfit ;) -3

The tube branches off from cannula is connected with the Automatic Phlegm Extractor Device.


Slide 6
  Automatic Phlegm Extractor Device
定量自動吸引器 定量自動吸引器
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.


Slide 7
  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.


Slide 8
  Immovable human.

No moving.
No feeding.
No voices.
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.


Slide 9
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.


Slide 10
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.


Slide 11
  That is a terrible story.

"I will not use respirator."
I indicated.
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.


Slide 12
  Rehospitalization

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.


Slide 13
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.
But......


Slide 14
増田さんと孫(赤ちゃん) When my energy and will was failing, my daughter gave me a letter.
Please survive.
Live and watch over your grandchildren’s growing up.


Slide 15
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.


Slide 16
  May 2006, Wearing Respirator
気管切開した箇所
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?


Slide 17
  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.


  Slide 18
Scenery of rehabilitation
リハビリの様子 リハビリの様子

スライド19
  "My daily life" came back to me little by little.
病院スタッフと外出する様子
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.


Slide 20
The cheerful staff
病院スタッフ
犬(病院スタッフ?)


Slide 21
Christmas concert
コンサートの様子
増田さんとサックス


Slide 22
When I began to go to rehabilitation...:'(
げっそりと疲れ切った様子の増田さん
Present ...:D
満面の笑みの増田さん


Slide 23
The wedding of my ex-girlfriend (actually, she was one of my helpers.)
結婚式の様子
Jazz live
薄暗いジャズ会場
Gion festival
駒形提灯が飾られた山鉾と増田さん


Slide 24
Pilgrimage --realizing my dream
御朱印を見せる女性と増田さん。顔をくしゃくしゃにしている。
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).


Slide 25
  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.


    Slide26
      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〜


    Slide 27
      Nursing Home Visit
    訪問看護師が吸引している様子 訪問看護師が口腔ケアしている様子
    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.


    Slide 28
      Bathing
    訪問入浴の様子

    お孫さんが訪問入浴を見学?


    Slide 29
      Home-visit rehabilitation
    訪問リハビリの様子

    お孫さんがリハビリをしているように…見える
    My grandchild is my PT!?


    Slide 30
      Personal assistant's care
    PAがリハビリをする様子 PAが胃ろうに注入している様子 PAが口腔ケアをしている?様子 PAがリハビリをする様子 PAと文字盤で会話する様子
    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.


    Slide 31
      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.


    Slide 32
      Operating a personal computer on a bed.
    ベッドでパソコンを操作する様子 車いすでタブレットを操作する様子
    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.


    Slide 33
    リフトで移乗する様子
    I use a lift when I move from bed to wheelchair.


    Slide 34
      Let's go out with a respirator.

    車いすに備え付けられたトレイ
    Before carrying a respirator.
    人工呼吸器を乗せた様子
    You can see the metallic tray on the bottom of the backside of my wheelchair.
    I put a battery and a respirator on it.


    Slide 35
      October 2015, I had the surgery to separate the glottal closure.
    声門閉鎖分離手術を受けた後
    The purpose of the surgery is the earnest wish for 12 years: I would like to taste again, and to prevent aspiration pneumonia.


    Slides 36.37
    Although having separating surgery...
    飲んでます!
    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!


    Slide 38
      My lifework

    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.


    Slide 39
    A scenery of the lesson at a high school or a junior college (2016)
    授業の様子

    Slide 40
    The symposium on communication support for incurable disease patients and the alphabet board lesson.
    文字盤で会話する様子1 文字盤で会話する様子2

    Slide 41
    Where am I? ;)
    ALS協会30周年記念式典での集合写真

    Slide 42
    My grandchildren had grown up.
    増田さんと孫たち1 増田さんと孫たち2

    *作成:青木 千帆子
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