音声ブラウザご使用の方向け: ナビメニューを飛ばして本文へ ナビメニューへ

  

From the Perspective of Higher Brain Dysfunctions

Etsuko Higashikawa
President, Japan Traumatic Brain Injury Association

Introduction

On March 11, 2011, I was attending a meeting on various issues such as problems that arise for persons living with sequela of traffic accidents after the death of family members or carers, and on promoting short-term stays at facilities for these people. The meeting was being held in a meeting room on the eighth-floor of the Ministry of Land, Infrastructure, Transport and Tourism (MLIT).

A little after 2:30 p.m., I felt as if I was being pushed up, and then the shaking began. Yuji Kuwayama of Zenkoku Senensei Ishikishogai Kazokukai Rengokai (the National Federation of Families of Persons with Persistent Disturbance of Consciousness) screamed, “this is bad,” and darted out of the room. He had experienced the Hanshin earthquake and has a son who uses a respirator at home.

I thought for an instant that the clock above my head might fall and looked up, but it appeared to be securely fastened. The room was shaking right to left, but I remained calm, cracking jokes such as, “if the MLIT's building collapses, Japan is probably done for.”

The meeting was cancelled, and we all watched the TV in the Guarantee Department of the Road Transport Bureau, and as time passed, footage of the serious damage in the various areas of the Tohoku region were shown, and I became concerned about how my friends who lived there were doing. I heard ambulance sirens outside and became concerned about my family, but I decided that making a fuss would not be productive. That night, I placed some card board boxes on the floor of the meeting room, lay down, and waited for morning. Although the MLIT staff of some bureaus may have been in a flurry of activity, they handled things calmly.

I returned to my home in Kanagawa the next day, but there was no real damage, and I found out that other members of my family were safe although it had been impossible for them, too, to get home the previous night, and they had been forced to stay at their workplace and school gymnasiums. The families of persons with brain injuries in the various areas also probably frantically tried to confirm the safety of love ones; there were concerns about member organizations in Iwate, Miyagi, and Fukushima, but since there was nothing we could do until communication was restored, we refrained from taking any action.

1. Work and response by the Japan Traumatic Brain Injury Association

The Japan Traumatic Brain Injury Association (the “Association”) is a young organization, and we had to reflect on the fact that we had made no arrangements, such as the best way to respond to this type of disaster, since we had our hands full with daily activities.

First, thinking that it was important to confirm the safety of members, their families, and related parties, we sent emergency mail notifications throughout Japan. The messages got through to Iwate that night, and we were ultimately able to make contact with Miyagi and Fukushima, but detailed conditions after the disaster were still unknown.

In particular, the Tohoku Koseinenkin Hospital in Miyagi and Southern Tohoku General Hospital in Fukushima, support hub medical facilities for people with higher brain dysfunction, sustained damage, and there were reports that the Chiba Ryogo Center and the Kohnan Hospital in Sendai, treatment centers for patients with persistent disturbance of consciousness after brain trauma, were also damaged. We were deeply concerned about how these vulnerable patients - many of them dependent on life-support machinery - were doing.

On the other hand, we strongly felt that since the area was likely to recover, until then, it was necessary to ascertain issues related to sequela of head injuries that were missed during the Great Hanshin Earthquake.

We decided that we must properly undertake relief activities and ascertain actual conditions.

However, the Association does not have much experience and lacks personnel, money, and supplies. Although it was impossible to dispatch staff or provide cars to the support center established by JDF later, the Association worked to at least solicit donations from member organizations throughout Japan and contribute those.

In a very short time we received a lot of relief funds and were able to work with JDF. In addition, immediately after the bullet train was operating again, we headed to Miyagi and Fukushima and were able to hand over the donations to organizations related to higher brain dysfunction and ascertain conditions.

Iwate-based Nogaisho Tomo-no-Kai Ihatobu called for donations of relief supplies from throughout Japan, and the director and deputy director themselves delivered the numerous donated supplies to the coastal area hit by the disaster, which made it possible to provide large amounts of supplies to not only those with some form of connection with higher brain dysfunctions but also emergency shelters in municipalities such as Yamada-machi and Rikuzentakata-shi.

I disseminated information on the local area gathered by the director and deputy director, which was useful for fund raising drives by tomo-no-kais in areas throughout Japan. Some even continue to donate all the proceeds from the monthly charity bazaars they hold now.

There was even one member in Kagawa who sent several tens of kilograms of rice that he had harvested himself.

As of the end of September last year, the Association had collected 3.60 million yen in donations. All of the donations were given to the people affected by the disaster and each kazokukai (a group consisting of family members of persons with higher brain dysfunctions) in the local area. The Iwate organization opened the new Seisei Gakusha Adajo in Morioka-shi, which is a type B employment support workshop, and the 1.6 million yen in donations was effectively used for making products that the workshop would sell. A reconstruction support project was launched to provide long-term continual funding to the disaster area by allocating 10% of the proceeds from the sale of these products.

I hear that they made various products including miso pickles and kimchi of wakame and kelp root grown in Otsuchi-cho, and recently received a large order from an organization in Toyohashi. I also worked at a local bazaar and took orders.

NPO Hoppu no Mori, which actively provides employment support, manages the restaurant Bisutari in Nagamachi, Sendai-shi, operates the Food Market, a sales outlet for organic vegetables, and in June of this year launched the Donmai Netto for providing support for higher brain dysfunctions throughout the prefecture after moving offices closer to the station.

2. Issues that have come to light

In both prefectures, new partnerships and projects were launched to transform difficulties into chances.

Unfortunately, the Association has never been very active in Fukushima, where the nuclear accident had a major impact. There are few members, and the hub organization is Southern Tohoku General Hospital in Koriyama-shi, a private hospital which is unable to cover the extensive area of the prefecture. Furthermore, hub hospitals sustained major damage, and family members of hospital staff died in the disaster. The handling of the nuclear accident, a major obstacle to reconstruction in Fukushima, will also have a substantial impact on the lives of persons with higher brain dysfunctions. Of the families of the thirteen members, one evacuated to Aomori and it is difficult for them to return to the prefecture. None of the problems have been resolved.

As for problems that came to light during efforts to ascertain conditions in the three prefectures impacted by the disaster, there were “calls for help” saying that once they arrived at the emergency shelter, some people there blamed the young member for not helping others, that they could not line up for supplies, or that someone had taken their place when they went to the bathroom, all of which put substantial stress on persons with traumatic brain injuries and their families. With the cooperation of the Rihabiriteshon Shinrishoku-kai (Association of Professionals in Rehabilitation Psychology), we dispatched clinical psychologists from Iwate and provided counseling services to families.

Families in Tokyo and Kanagawa have also voiced the opinion that preparatory measures for future possible disasters should be taken.

Fortunately, the Association was selected for a grant from the Japanese Physical Therapy Association, which started to receive applications in April last year, and this made it possible to conduct the survey “What were you doing when the Great East Japan Earthquake hit?” We received the support of Rihabiriteshon Shinrishoku-kai for creating the survey questionnaire. The survey was distributed to five hundred persons with higher brain dysfunctions and their families in Kanagawa and northward, and the goal was to ascertain the psychological state and distinctive behavior of these people. The effective response rate was 52.3%.

The survey questions, survey objective, and results were compiled into a report issued in March 2012, which then was submitted to the Japanese Physical Therapy Association. People should feel free to refer to the report as it has also been posted on the Association's website, and released through the Rihabiriteshon Shinrishoku-kai's website.

3. Proposals regarding the future

This fiscal year we were fortunate once again to receive grants, and we will work to create:

1) an emergency security card and

2) an emergency response manual

They are getting close to being completed as the drafts have been written.

As for 1), Related people will always carry the emergency security card in their wallet or notebook. If there is an emergency or similar situation when the person is away from home, information, such as contact details, medicine being taken, and the medical facility they normally visit can be provided to supporters.

As for 2), there is the issue that it is difficult to communicate the distinctive features of higher brain dysfunctions, which are not visible. This is a response manual that calls on people to give special consideration for dysmnesia, aprosexia, executive function deficit, dysphasia, social behavior disorders, and the leaflet will be distributed to entities such as kazokukais (family associations) and hub medical facilities that provide support for people with higher brain dysfunctions throughout Japan.

Both will also be posted on the Association's website and the Rihabiriteshon Shinrishoku-kai's website as soon as the related report is submitted to the Japanese Physical Therapy Association. The items will be freely available as downloads and will probably be helpful for the families and supporters of persons with higher brain dysfunctions who are not members.

I would like to express my appreciation to all related parties for their cooperation and hope to receive their advice in the future. While praying for a quick recover in the disaster area, I want to keep in mind that disasters strike when we forget about them and to strengthen our network in anticipation of any future events of this kind.