Beyond the Terminal Stage:
For All Involved in ALS and All Intractable Diseases

■KAWAGUCHI Yumiko December 22, 2014　Beyond the Terminal Stage: For All Involved in ALS and All Intractable Diseases，Seidosha, 250p.　ISBN-10: 4791768388　ISBN-13: 978-4791768387　2,000 yen + Tax [amazon]／[kinokuniya]

■Contents

Don't worry--you can live a life.

ALS (amyotrophic lateral sclerosis), an intractable disease, has been told with severity and despair of "bedridden." However, there exist both a local care history of spinning ALS person's daily life, venturing so far away from death and resignation and wisdom toward the future of humanity.

The author, who has served as a supporter after caring her mother with ALS, has had conversations with people practising/supporting "lives" from various perspectives.

This book is for a person who has an intractable disease, his/her family members and his/her friends.
Moreover, this book is a guidebook for a person who does not know ALS and intractable diseases at all since it is useful for a way of living and choice in life.

■Table of Contents

Introduction

１ Will of a Man who Lived in the Predawn of Home Mechanical Ventilation

Hiroshi Nagaoka (ALS Person) & Yumiko Kawaguchi

Challenge--Ralationship with the Author
About Ease of Death　Hiroshi Nagaoka
Cannula Balloon and Aspiration
Pain of Bedsore
Eternal Sleep
Dear ALS　Hiroshi Nagaoka

２　Witnesses of Women Living in the Busy Season of Home Mechanical Ventilation

Misao Hashimoto (ALS Person) & Yumiko Kawaguchi

As an Ultimate Role Model
Resisting Euthanasia
Enlisting Science Technology as a Supporter
Freedom of Attaining the Self
Being Immobile Is not a Problem
Responsibility of Living in Difficult Conditions
I Will not Die Yet

３ Becoming a Supporter

Komei Okamoto (Supporter) & Yumiko Kawaguchi

Until I Meet ALS
From a Reporter to a Supporter--Meeting with Bea
Start of a Support Project--Meeting with Mr. Kotani
Compelling Words
Creating an Opportunity
Violence of Making "Stars" Movement Has
Anonymity of Patients and Confidentiality of Community
Transparency of Information
Gray Area

４ Girls' Night Out for Survival

Sarasa Ono (Person with Intractable Disease) & Yumiko Kawaguchi

From Cohesiveness to "Orchid"
Image of "the Terminal Stage" and Its Reality
Death with Dignity Act for whom?
For Confidence and Medical Care Based on Life

５ Recovery of QOL and Palliative Care

Takashi Nakajima （Doctor) & Yumiko Kawaguchi

QOL/SOL　What Measures/Cannot Measure
Palliative Care　A Road ro Reframe Either "Life-support Treatment or Death with Dignity"　Is Care for Intractable Diseases Palliative Care?
Sakura Model　What a Person with ALS Employs, Develops and Does a Business
German Medicine　Paradigm of the Modern Medicine
Death with Dignity　Strategy for Anti-living Will/Advance Directive
Cyborg Patient Theory　Temptation of Euphenics and Machine as Variation
Spritual Care　Eye for Existence

６ Genealogy of Care for Intractable Diseases

Sawako Kawamura （Nurse） & Yumiko Kawaguchi

Medically Underserved Areas
Social Work
Health Center/Health Nurse
Association for Subacute Myelo-Optico-Neuropathy
Open Space of Subacute Myelo-Optico-Neuropathy
Birth of "Intractable Diseases"　Welfare of Patients/Cooperation of Patient Groups
Construction of Health Sociology　Care Manage
Nursing/Care of "Watching"　Imrpovement of Effectiveness
Locality of Care

７ What Is Effective if the World Is not Changed by "what Is Right"?

Kohei Sadoshima （Editor）& Yumiko Kawaguchi

Universe Brothers and ALS
Works and Words Make the World Go around
What Is Necessary for Patient Groups/NPOs to Have a Business Perspective?
Asking a Person for Help
To Set a Goal

Conclusion