{"id":5221,"date":"2016-12-09T07:22:20","date_gmt":"2016-12-08T22:22:20","guid":{"rendered":"http:\/\/www.poran.net\/ito\/?p=5221"},"modified":"2016-12-09T07:36:38","modified_gmt":"2016-12-08T22:36:38","slug":"%ef%bc%882of2%ef%bc%89alsmnd%e5%9b%bd%e9%9a%9b%e9%80%a3%e5%90%88%e3%81%ab%e3%81%a6%e5%b2%a1%e9%83%a8%e5%ae%8f%e7%94%9f%e3%81%95%e3%82%93%e3%81%8c%e7%99%ba%e8%a1%a8","status":"publish","type":"post","link":"https:\/\/www.poran.net\/ito\/archives\/5221","title":{"rendered":"\uff082of2\uff09ALS\/MND\u56fd\u969b\u9023\u5408\u306b\u3066\u5ca1\u90e8\u5b8f\u751f\u3055\u3093\u304c\u767a\u8868"},"content":{"rendered":"<p>Views: 750<\/p><p>\u4ee3\u7406\u767a\u8868\u8005\u306e\u5b89\u9054\u3055\u3093\uff08\u4e00\u6a4b\u5927\uff09\u304b\u3089\uff0c\u5ca1\u90e8\u5b8f\u751f\u3055\u3093\u306e\u767a\u8868\u30b9\u30af\u30ea\u30d7\u30c8\u3092\u63d0\u4f9b\u3057\u3066\u3044\u305f\u3060\u304d\u307e\u3057\u305f\u3002<br \/>\n\u3053\u3053\u306b\u5168\u6587\u3092\u63b2\u8f09\u3044\u305f\u3057\u307e\u3059\u3002<br \/>\n\u5f8c\u65e5\uff0c\u65e5\u672cALS\u5354\u4f1a\u3088\u308a\u6b63\u5f0f\u306a\u30ec\u30dd\u30fc\u30c8\u304c\u3042\u308b\u3068\u601d\u3044\u307e\u3059\u3002<\/p>\n<p>\u52d5\u753b\u3084\u5f53\u65e5\u306e\u6a21\u69d8\u306f\u3053\u3061\u3089\u3002<br \/>\n<a href=\"http:\/\/www.poran.net\/ito\/archives\/5203\">\uff081of2\uff09ALS\/MND\u56fd\u969b\u9023\u5408\u306b\u3066\u5ca1\u90e8\u5b8f\u751f\u3055\u3093\u304c\u767a\u8868<\/a><\/p>\n<hr \/>\n<p>Hello everyone. I\u2019m Hiroki Okabe from the Japan ALS Association. I would like to thank everyone from Ireland organizing this meeting. This is the second time I have been to this meeting after first attending in Sydney in 2011. I am very healthy ALS patient \u2013 I must be, to manage a 15 hour flight from Japan. And, please let me wearing my hat because I have a problem of my eyes, so, please. So then, let\u2019s start the presentation.<\/p>\n<p>\u306f\u3058\u3081\u307e\u3057\u3066\u3002\u65e5\u672cALS\u5354\u4f1a\u306e\u5ca1\u90e8\u3067\u3059\u3002<br \/>\n\u3053\u306e\u4f1a\u8b70\u3092\u958b\u50ac\u3059\u308b\u306b\u3042\u305f\u3063\u3066\u3054\u5c3d\u529b\u3092\u3044\u305f\u3060\u3044\u305f\u30a2\u30a4\u30eb\u30e9\u30f3\u30c9\u306e\u7686\u3055\u307e\u3068\u3059\u3079\u3066\u306e\u7686\u3055\u307e\u306b\u611f\u8b1d\u3092\u7533\u3057\u4e0a\u3052\u307e\u3059\u3002<br \/>\n\u79c1\u306f2011\u5e74\u306e\u30b7\u30c9\u30cb\u30fc\u3067\u306e\u30a2\u30e9\u30a4\u30a2\u30f3\u30b9\u4ee5\u6765\u3001\u3053\u306e\u4f1a\u8b70\u306b\u53c2\u52a0\u3059\u308b\u306e\u306f2\u56de\u76ee\u3067\u3059\u3002<br \/>\n\u7d50\u69cb\u5065\u5eb7\u306aALS\u60a3\u8005\u3067\u3059\u3002\u4f55\u3057\u308d15\u6642\u9593\u304b\u3051\u3066\u65e5\u672c\u304b\u3089\u6765\u305f\u306e\u3067\u3059\u304b\u3089\u3002<br \/>\n\u3067\u3059\u304c\u3001\u76ee\u306b\u9ec4\u6591\u5909\u6027\u75c7\u3092\u3082\u3063\u3066\u3044\u307e\u3059\u306e\u3067\u3001\u5e3d\u5b50\u3092\u304b\u3076\u3063\u305f\u307e\u307e\u304a\u8a71\u3059\u308b\u3053\u3068\u3092\u3069\u3046\u304b\u304a\u8a31\u3057\u304f\u3060\u3055\u3044\u3002<br \/>\n\u305d\u308c\u3067\u306f\u3001\u767a\u8868\u3092\u59cb\u3081\u307e\u3059\u3002<\/p>\n<p>I was born in Tokyo, 1958. Since childhood, I loved sports. I was in an equestrian club at university. After I graduate from university, I worked at a construction company. And then, I started my company, a construction consulting office.In 2006, I developed ALS. Today, I\u2019d like to show you a short film at first.<\/p>\n<p style=\"text-align: left;\">1958\u5e74 \u6771\u4eac\u306b\u751f\u307e\u308c\u307e\u3057\u305f\u3002<br \/>\n\u5c11\u5e74\u6642\u4ee3\u304b\u3089\u30b9\u30dd\u30fc\u30c4\u304c\u5927\u597d\u304d\u3067\u3001\u5927\u5b66\u6642\u4ee3\u306f\u99ac\u8853\u90e8\u306b\u6240\u5c5e\u3002<br \/>\n\u5efa\u8a2d\u4f1a\u793e\u306e\u52e4\u52d9\u3092\u7d4c\u3066\u3001\u81ea\u5206\u3067\u30b3\u30f3\u30b5\u30eb\u30bf\u30f3\u30c8\u4e8b\u52d9\u6240\u3092\u8a2d\u7acb\u3057\u307e\u3057\u305f\u3002<\/p>\n<p style=\"text-align: center;\"><iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/5euJhZLeF20\" width=\"640\" height=\"360\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p style=\"text-align: left;\">The movie showed to you is one day of my daily life. This movie was listed on the final choice of the \u201cMY RODE REEL\u201d, the competition of short movie all over the world. The director is Emi Kashiwabara, who is with me, one of my caregiver.<\/p>\n<p>\u3054\u89a7\u3044\u305f\u3060\u3044\u305f\u30b7\u30e7\u30fc\u30c8\u30e0\u30fc\u30d3\u30fc\u306f\u79c1\u306e\u751f\u6d3b\u306e1\u65e5\u3092\u7d39\u4ecb\u3057\u305f\u3082\u306e\u3067\u3059\u3002<br \/>\n\u3053\u306e\u30e0\u30fc\u30d3\u30fc\u306f\u3001\u30de\u30a4\u30ed\u30fc\u30c9\u30ea\u30fc\u30eb\u3067\u30d5\u30a1\u30a4\u30ca\u30eb\u307e\u3067\u3044\u3063\u305f\u3082\u306e\u3067\u3059\u3002<br \/>\n\u76e3\u7763\u306f\u3053\u3053\u306b\u3044\u308b\u67cf\u539f\u7d75\u7f8e\u3055\u3093\u3067\u3059\u3002<\/p>\n<p>In 2006, I developed ALS. In the following year, I started to receive care service at home by my caregivers. In 2009, I started to use PEG and had tracheostomy for using ventilator. In 2010, I established a corporation to start a home-visiting care office.In the following year of my establishment of my own office, I became vice-chairman of Japan ALS Association. In 2012, I also assumed the post of vice-president of ALS\/MND support center Sakura-Kai, a Non-Profit-Organization. And then, today I came here as the chairman of Japan ALS Association.<\/p>\n<p>2006\u5e74\u3000ALS\u3092\u767a\u75c7<br \/>\n2007\u5e74\u3000\u5728\u5b85\u7642\u990a\u3092\u958b\u59cb<br \/>\n2009\u5e74\u3000\u80c3\u763b\u9020\u8a2d\uff0f\u6c17\u7ba1\u5207\u958b\uff0f\u4eba\u53e3\u547c\u5438\u5668\u3092\u88c5\u7740\uff0f2010\u5e74 \u8a2a\u554f\u4ecb\u8b77\u4e8b\u696d\u6240\u306e\u8a2d\u7acb\u306e\u305f\u3081\u306e\u6cd5\u4eba\u3092\u8a2d\u7acb<br \/>\n2011\u5e74\u3000\u65e5\u672cALS\u5354\u4f1a\u526f\u4f1a\u9577\u5c31\u4efb<br \/>\n2012\u5e74\u3000\u3055\u304f\u3089\u4f1a\u526f\u7406\u4e8b\u9577<br \/>\n2016\u5e74\u3000\u65e5\u672cALS\u5354\u4f1a\u4f1a\u9577<br \/>\n\u73fe\u5728\u306b\u81f3\u308b<\/p>\n<p>Everyday I\u2019m packed with work and business just like today. Even using a ventilator, I came to Dublin. I\u2019ve been to abroad four times since I started using ventilator.In Japan, I go out two-third of month for my work. And when I\u2019m at home I welcome people who come to learn how to live with ALS at home or I work for my home-caring business or I\u2019m writing script like this presentation by using this letter board, communicating techniques or computer to instruct my caregivers.<\/p>\n<p>\u79c1\u306e\u751f\u6d3b\u306f\u6bce\u65e5\u4ed5\u4e8b\u306b\u8ffd\u308f\u308c\u308b\u65e5\u3005\u3067\u3059\u3002<br \/>\n\u3053\u3046\u3057\u3066\u547c\u5438\u5668\u3092\u3064\u3051\u3066\u3044\u3066\u3082\u30a2\u30a4\u30eb\u30e9\u30f3\u30c9\u306e\u30c0\u30d6\u30ea\u30f3\u307e\u3067\u6765\u307e\u3057\u305f\u3057\u3001\u547c\u5438\u5668\u3092\u3064\u3051\u3066\u304b\u3089\u6d77\u5916\u306b\u6765\u308b\u306e\u306f4\u56de\u76ee\u3067\u3059\u3002<br \/>\n\u65e5\u672c\u3067\u306f\u3001\u6bce\u670820\u65e5\u524d\u5f8c\u306f\u5916\u51fa\u3057\u3066\u3044\u3066\u3001\u5728\u5b85\u3057\u3066\u3044\u308b\u6642\u306f\u3001\u6765\u5ba2\u3068\u30d1\u30bd\u30b3\u30f3\u3084\u4ecb\u8b77\u8005\u306b\u3053\u3046\u3057\u3066\u53e3\u6587\u5b57\u3084\u6587\u5b57\u76e4\u3067\u4ed5\u4e8b\u306e\u6307\u793a\u3084\u539f\u7a3f\u306a\u3069\u3092\u4f5c\u6210\u3057\u3066\u3044\u307e\u3059\u3002<\/p>\n<p>I go to everywhere all over Japan by express train, and airplane.I go to day business trip to 5 or 6 hundred kilometers away. It\u2019s natural for me. Sometimes I go to a day trip about 1000 kilometers away for my work by airplane.When I developed ALS, I seriously thought that I would never go out from my home except to go to the hospital. So, I threw away lots of clothes and many pair of shoes.<\/p>\n<p>\u98db\u884c\u6a5f\u3084\u65b0\u5e79\u7dda\u306b\u4e57\u3063\u3066\u5168\u56fd\u3092\u99c6\u3051\u56de\u3063\u3066\u3044\u307e\u3059\u3002<br \/>\n500\uff5e600km\u306e\u79fb\u52d5\u306e\u65e5\u5e30\u308a\u306f\u5f53\u305f\u308a\u524d\u3067\u3001\u4ed5\u4e8b\u306b\u51fa\u304b\u3051\u307e\u3059\u3002<br \/>\n\u6642\u306b\u306f\u3001\u98db\u884c\u6a5f\u3092\u5229\u7528\u3057\u30661000\u30ad\u30ed\u304f\u3089\u3044\u306f\u306a\u308c\u305f\u5834\u6240\u306b\u65e5\u5e30\u308a\u3082\u3057\u307e\u3059\u3002<br \/>\n\u767a\u75c5\u3057\u305f\u9803\u306f\u3082\u30462\u5ea6\u3068\u75c5\u9662\u306b\u884c\u304f\u4ee5\u5916\u306e\u5916\u51fa\u306f\u3057\u306a\u3044\u3068\u672c\u6c17\u3067\u601d\u3063\u3066\u3044\u307e\u3057\u305f\u3002<br \/>\n\u305f\u304f\u3055\u3093\u306e\u670d\u3084\u9774\u3092\u6368\u3066\u3066\u3057\u307e\u3044\u307e\u3057\u305f\u3002<\/p>\n<p>However, as I said, now I go to several places and I am really busy at work everyday.Using the official medical and social welfare services makes my life possible.However, it\u2019s really important \/ crucial to arrange own my care plan by myself. That been said, caring ALS patient is much more difficult compared with caring other patients.It\u2019s because caregivers have to master special and individual ways to communicate with us and master some medical cares, like sucking phlegm, tube feeding and treating ventilator in addition to the whole physical caring.<\/p>\n<p>\u79c1\u306e\u751f\u6d3b\u3092\u53ef\u80fd\u306b\u3057\u3066\u3044\u308b\u306e\u306f\u533b\u7642\u3068\u798f\u7949\u306e\u5236\u5ea6\u5229\u7528\u3067\u3059\u3002<br \/>\n\u3068\u308a\u308f\u3051\u4ecb\u8b77\u4f53\u5236\u306e\u69cb\u7bc9\u304c\u91cd\u8981\u306a\u30dd\u30a4\u30f3\u30c8\u3067\u3059\u3002<br \/>\nALS \u306e\u4ecb\u8b77\u306f\u4e00\u822c\u7684\u306a\u4ecb\u8b77\u306b\u6bd4\u3079\u3066\u683c\u6bb5\u306b\u96e3\u3057\u3044\u3068\u8a00\u308f\u308c\u3066\u3044\u307e\u3059\u3002<br \/>\n\u305d\u308c\u306f\u3001\u5168\u4ecb\u52a9\u306e\u8eab\u4f53\u4ecb\u8b77\u306b\u52a0\u3048\u3066\u3001\u533b\u7642\u7684\u30b1\u30a2\uff08\u75f0\u306e\u5438\u5f15\u3084\u7d4c\u7ba1\u6804\u990a\u306e\u6ce8\u5165\u3084\u547c\u5438\u5668\u306e\u7ba1\u7406\u306a\u3069\uff09\u3068\u7279\u6b8a\u306a\u30b3\u30df\u30e5\u30cb\u30b1\u30fc\u30b7\u30e7\u30f3\u624b\u6bb5\u306e\u7fd2\u5f97\u304c\u5fc5\u8981\u3060\u304b\u3089\u3067\u3059\u3002<\/p>\n<p>There are little care givers who have all these skills, so we need to train our own caregivers by ourselves. This system we promote is, was named \u201cSakura-Model\u201d.Some of you may have heard about this system because Yumiko Kawaguchi talked about it at the Alliance in Yokohama, in 2006.<\/p>\n<p>\u3053\u306e\u3088\u3046\u306a\u30b9\u30ad\u30eb\u3092\u6301\u3063\u305f\u30b1\u30a2\u30e9\u30fc\u306f\u6ec5\u591a\u306b\u3044\u307e\u305b\u3093\u3002<br \/>\n\u305d\u3053\u3067\u3001\u81ea\u5206\u81ea\u8eab\u3067\u80b2\u6210\u3059\u308b\u5fc5\u8981\u304c\u3042\u308a\u307e\u3059\u3002\u305d\u306e\u4f53\u5236\u3092\u3055\u304f\u3089\u30e2\u30c7\u30eb\u3068\u8a00\u3044\u307e\u3059\u3002<br \/>\n2006\u5e74\u306e\u6a2a\u6d5c\u306e\u30a2\u30e9\u30a4\u30a2\u30f3\u30b9\u3067\u767a\u8868\u3092\u3055\u305b\u3066\u3044\u305f\u3060\u3044\u305f\u306e\u3067\u3001\u3054\u8a18\u61b6\u306e\u65b9\u3082\u3044\u3089\u3063\u3057\u3083\u308b\u304b\u3082\u3057\u308c\u307e\u305b\u3093\u3002<\/p>\n<p>About this system, in short, we, the patient\u2019s or our families recruit and train our caregivers by ourselves.<br \/>\nBy doing that, it is possible for you to feel more free, like me.<\/p>\n<p>\u3053\u306e\u4e8b\u3092\u4e00\u8a00\u3067\u8868\u3059\u3068\u60a3\u8005(\u6216\u3044\u306f\u5bb6\u65cf)\u304c\u81ea\u3089\u30b1\u30a2\u30e9\u30fc\u3092\u63a2\u3057\u3066\u80b2\u6210\u3057\u3001\u96c7\u7528\u3092\u3059\u308b\u3068\u3044\u3046\u30b7\u30b9\u30c6\u30e0\u3067\u3059\u3002<br \/>\n\u3053\u308c\u3092\u5b9f\u73fe\u3059\u308b\u4e8b\u306b\u3088\u3063\u3066\u3001\u79c1\u306e\u3088\u3046\u306a\u751f\u6d3b\u304c\u53ef\u80fd\u306b\u306a\u308a\u307e\u3059\u3002<\/p>\n<p>And, I would like to share the idea about recruiting college students as part-time caregivers. There are some differences depending on the areas, but the lack of caregiver is a serious problem everywhere in Japan. So, to solve the lack of care givers, some Japanese patients employ college students as part-time workers.<\/p>\n<p>\u3082\u3046\uff11\u3064\u7686\u69d8\u306b\u304a\u8a71\u3057\u3057\u305f\u3044\u4e8b\u306f\u3001\u5b66\u751f\u306e\u6d3b\u7528\u3067\u3059\u3002<br \/>\n\u4ecb\u8b77\u8005\u4e0d\u8db3\u306f\u5730\u57df\u306b\u3088\u3063\u3066\u5dee\u306f\u3042\u308b\u3082\u306e\u306e\u3001\u65e5\u672c\u5168\u56fd\u306e\u8ab2\u984c\u3067\u3082\u3042\u308a\u307e\u3059\u3002<br \/>\n\u305d\u3053\u3067\u3001\u5b66\u751f\u306e\u6d3b\u7528\u306b\u3088\u3063\u3066\u4ecb\u8b77\u529b\u3092\u78ba\u4fdd\u3057\u3066\u3044\u308b\u60a3\u8005\u3082\u3044\u308b\u306e\u3067\u3059\u3002<\/p>\n<p>Most of my fellows were part-time care givers for me or other ALS patients when they were college students. During the dinner time, I\u2019ll introduce them to you. They have practiced to introduce by themselves in English. So please ask them about the merits and demerits of working as student caregivers.<\/p>\n<p>\u3053\u3053\u306b\u6765\u3066\u3044\u308b\u79c1\u306e\u540c\u884c\u8005\u3082\u304b\u3064\u3066\u5b66\u751f\u3067\u79c1\u3084\u4ed6\u306eALS\u60a3\u8005\u306e\u3068\u3053\u308d\u3067\u4ecb\u8b77\u306b\u643a\u308f\u3063\u3066\u30a2\u30eb\u30d0\u30a4\u30c8\u3092\u3057\u3066\u3044\u305f\u4eba\u3067\u3059\u3002<br \/>\n\u82f1\u8a9e\u306e\u81ea\u5df1\u7d39\u4ecb\u3092\u7df4\u7fd2\u3057\u3066\u304d\u305f\u306e\u3067\u3001\u30c7\u30a3\u30ca\u30fc\u30bf\u30a4\u30e0\u306b\u4e00\u4eba\u305a\u3064\u81ea\u5df1\u7d39\u4ecb\u3057\u3066\u3082\u3089\u3044\u307e\u3059\u3002<br \/>\n\u5f7c\u3089\u306b\u5b66\u751f\u30b1\u30a2\u30e9\u30fc\u306e\u4ed5\u7d44\u307f\u3084\u826f\u3044\u3068\u3053\u308d\u30fb\u60aa\u3044\u3068\u3053\u308d\u306a\u3069\u3092\u76f4\u63a5\u805e\u3044\u3066\u304f\u3060\u3055\u3044\u3002<\/p>\n<p>When I developed ALS, I was often asked \u201cWhat would you like to do if you completely recover from ALS?\u201d I always answered that I really would like to work again. Well, I didn\u2019t recover from ALS, but I\u2019m busy with my work, so it means I fulfilled my wish. Actually, I have so many works to do, that I have to work whether I want or not.<\/p>\n<p>\u79c1\u306fALS\u306b\u7f79\u60a3\u3057\u305f\u3068\u304d\u306b\u826f\u304f\u8cea\u554f\u3092\u3055\u308c\u307e\u3057\u305f\u3002<br \/>\nALS\u304c\u6cbb\u3063\u305f\u3089\u4f55\u30921\u756a\u3057\u305f\u3044\u3067\u3059\u304b\u3068\u3002<br \/>\n\u79c1\u306f\u4ed5\u4e8b\u304c\u3057\u305f\u3044\u3068\u8a00\u3046\u4e8b\u304c\u5e38\u3067\u3057\u305f\u3002<br \/>\n\u73fe\u5728\u306e\u751f\u6d3b\u306f\u3001ALS\u306f\u6cbb\u3063\u3066\u3044\u307e\u305b\u3093\u304c\u3001\u81ea\u5206\u306e1\u756a\u3084\u308a\u305f\u3044\u4ed5\u4e8b\u3092\u3057\u3066\u3044\u308b\u8a33\u3067\u3059\u3002<\/p>\n<p>In conclusion, I really would like to tell you is that, every patient has each life style.And, we have the right to choose our life freely as same as ordinary people.This is not a original culture of Japan or something relating to Orientalism. It must be the same thing all over the world.<\/p>\n<p>\u6700\u5f8c\u306b\u3001\u79c1\u304c\u7686\u69d8\u306b\u304a\u4f1d\u3048\u3057\u305f\u3044\u306e\u306f\u3001ALS\u306a\u3069\u306e\u60a3\u8005\u3067\u3082\u69d8\u3005\u306a\u4eba\u751f\u304c\u3042\u3063\u3066\u3001\u305d\u308c\u306f\u60a3\u8005\u306e\u6a29\u5229\u3068\u3057\u3066\u9078\u629e\u3067\u304d\u308b\u3088\u3046\u306b\u306a\u3063\u3066\u307b\u3057\u3044\u3068\u3044\u3046\u3053\u3068\u3067\u3059\u3002<br \/>\n\u305d\u308c\u306f\u6c7a\u3057\u3066\u65e5\u672c\u72ec\u7279\u306e\u6587\u5316\u306b\u3088\u308b\u3082\u306e\u3067\u306f\u306a\u3044\u3053\u3068\u3001\u4e16\u754c\u3067\u5168\u304f\u540c\u3058\u3088\u3046\u306b\u8003\u3048\u3089\u308c\u308b\u3082\u306e\u3060\u3068\u3044\u3046\u3053\u3068\u3092\u3001\u308f\u304b\u3063\u3066\u307b\u3057\u3044\u306e\u3067\u3059\u3002<\/p>\n<p>I have a friend, she is German and she is a researcher of sociology.She accept my idea and life style. So this time, I asked her to how I should explain my idea to the participants of this alliance.She said, it is the best way to show you myself and my life style, so I decided to have presentation today.<\/p>\n<p>\u79c1\u306e\u53cb\u4eba\u306b\u3001\u30c9\u30a4\u30c4\u4eba\u306e\u793e\u4f1a\u5b66\u8005\u306e\u5973\u6027\u304c\u3044\u307e\u3059\u3002<br \/>\n\u305d\u306e\u4eba\u306f\u79c1\u306e\u751f\u304d\u65b9\u3092\u8a8d\u3081\u3066\u304f\u308c\u3066\u3044\u307e\u3059\u3002<br \/>\n\u305d\u308c\u3067\u4eca\u56de\u306e\u30a2\u30e9\u30a4\u30a2\u30f3\u30b9\u3067\u3001\u4e16\u754c\u306e\u65b9\u306b\u79c1\u306e\u60f3\u3044\u3092\u4f1d\u3048\u308b\u306b\u306f\u3001\u3069\u3046\u3057\u305f\u3089\u826f\u3044\u3067\u3057\u3087\u3046\u304b\u3068\u5c0b\u306d\u307e\u3057\u305f\u3002<br \/>\n\u5f7c\u5973\u306f\u3001\u79c1\u306e\u59ff\u3068\u751f\u6d3b\u3092\u898b\u305b\u308b\u3053\u3068\u3060\u3068\u3044\u3063\u3066\u3044\u307e\u3057\u305f\u3002<br \/>\n\u305d\u3053\u3067\u3001\u79c1\u306e\u751f\u6d3b\u3092\u304a\u898b\u305b\u3059\u308b\u3053\u3068\u306b\u3057\u3088\u3046\u3068\u3001\u4eca\u56de\u767a\u8868\u3059\u308b\u3053\u3068\u3092\u6c7a\u3081\u307e\u3057\u305f\u3002<\/p>\n<p>Please come to talk to me. Please come to ask me everything you want to know. This is the best way to understand me.I\u2019m not a special patient. Every patient can choose each life style based on our each value. Of course\u00a0we need to get official welfare system and enough caregiver. However, if we could do that, it\u2019s possible for every patient can choose to live, alive.I really wanted to tell you this.<\/p>\n<p>\u79c1\u3068\u304a\u8a71\u3092\u3057\u306b\u3044\u3089\u3057\u3066\u304f\u3060\u3055\u3044\u3002<br \/>\n\u76f4\u63a5\u306a\u3093\u3067\u3082\u77e5\u308a\u305f\u3044\u3053\u3068\u3092\u304a\u805e\u304d\u304f\u3060\u3055\u3044\u3002<br \/>\n\u76f4\u63a5\u4ea4\u6d41\u3059\u308b\u3053\u3068\u3067\u3001\u7406\u89e3\u3057\u3066\u307b\u3057\u3044\u3068\u601d\u3063\u3066\u3044\u307e\u3059\u3002<br \/>\n\u79c1\u306f\u6c7a\u3057\u3066\u7279\u5225\u306a\u60a3\u8005\u3067\u306f\u3042\u308a\u307e\u305b\u3093\u3002<br \/>\n\u3069\u306e\u60a3\u8005\u3082\u3001\u81ea\u5206\u306e\u4fa1\u5024\u89b3\u306b\u57fa\u3065\u3044\u3066\u3001\u751f\u6d3b\u306e\u4ed5\u65b9\u3001\u751f\u304d\u65b9\u3092\u9078\u3076\u3053\u3068\u304c\u3067\u304d\u307e\u3059\u3002<br \/>\n\u3082\u3061\u308d\u3093\u305d\u308c\u306b\u306f\u793e\u4f1a\u5236\u5ea6\u3068\u4ecb\u8b77\u8005\u306e\u78ba\u4fdd\u304c\u5fc5\u8981\u3067\u3059\u304c\u3001\u305d\u308c\u304c\u5b9f\u73fe\u3067\u304d\u308c\u3070\u3001\u3053\u306e\u3088\u3046\u306a\u751f\u6d3b\u304c\u3001\u751f\u304d\u308b\u3053\u3068\u3092\u9078\u3076\u3053\u3068\u304c\u3001\u53ef\u80fd\u306b\u306a\u308a\u307e\u3059\u3002<br \/>\n\u3053\u306e\u3053\u3068\u3092\u3069\u3046\u3057\u3066\u3082\u304a\u4f1d\u3048\u3057\u305f\u304b\u3063\u305f\u306e\u3067\u3059\u3002<\/p>\n<p>Please come and talk to me freely after today\u2019s conference and dinner time. I can communicate with you because I have good interpreter and caregivers.Thank you for listening.<\/p>\n<p>\u3069\u3046\u305e\u3001\u3053\u306e\u5f8c\u3084\u30c7\u30a3\u30ca\u30fc\u30bf\u30a4\u30e0\u3067\u3001\u79c1\u306b\u6c17\u8efd\u306b\u58f0\u3092\u304b\u3051\u3066\u304f\u3060\u3055\u3044\u3002<br \/>\n\u79c1\u306e\u30b3\u30df\u30e5\u30cb\u30b1\u30fc\u30b7\u30e7\u30f3\u306f\u7279\u6b8a\u3067\u3059\u304c\u3001\u5fc3\u5f37\u3044\u901a\u8a33\u8005\u3068\u30d8\u30eb\u30d1\u30fc\u304c\u3044\u308b\u306e\u3067\u3001\u5168\u304f\u81ea\u7531\u306b\u30b3\u30df\u30e5\u30cb\u30b1\u30fc\u30b7\u30e7\u30f3\u304c\u3067\u304d\u307e\u3059\u3002<br \/>\n\u3054\u6e05\u8074\u3001\u3042\u308a\u304c\u3068\u3046\u3054\u3056\u3044\u307e\u3057\u305f\u3002<\/p>\n<p>\u3010\u8cea\u7591\u5fdc\u7b54\u3011<br \/>\nQ1\uff1aHi, thank you. Do you know the persentages of those ALS patients in Japan who say yes ventilation?<br \/>\n\u3053\u3093\u306b\u3061\u306f\u3001\u3054\u767a\u8868\u3042\u308a\u304c\u3068\u3046\u3054\u3056\u3044\u307e\u3057\u305f\u3002<br \/>\n\u4eba\u5de5\u547c\u5438\u5668\u3092\u88c5\u7740\u3059\u308b\u65e5\u672c\u306e\u60a3\u8005\u306f\u3069\u306e\u304f\u3089\u3044\u306e\u5272\u5408\u3044\u308b\u306e\u304b\u3001\u3054\u5b58\u77e5\u3067\u3059\u304b\uff1f<\/p>\n<p>A1\uff1aAbout 30%.<br \/>\n\u4e09\u5272\u304f\u3089\u3044\u3067\u3059\u3002<\/p>\n<p>Q2\uff1aVery good your (speech). How many in your team for own dairy basis? How many to employ?<br \/>\n\u826f\u3044\u767a\u8868\u3067\u3057\u305f\u3002\u3042\u306a\u305f\u306e\u30b1\u30a2\u306b\u306f\u6bce\u65e5\u5e73\u5747\u3067\u3069\u306e\u304f\u3089\u3044\u306e\u4eba\u304c\u5165\u3063\u3066\u3044\u307e\u3059\u304b\uff1f<br \/>\n\u3082\u3057\u304f\u306f\u3001\u4f55\u4eba\u96c7\u7528\u3057\u3066\u3044\u307e\u3059\u304b\uff1f<\/p>\n<p>A2\uff1aWe have seven professional caregivers and many many students as part-time workers.<br \/>\n\u30b1\u30a2\u30e9\u30fc\u306f7\u4eba\u306e\u30d7\u30ed\u3068\u30018\u4eba\u306e\u5b66\u751f\u304c\u62c5\u5f53\u3057\u3066\u3044\u307e\u3059\u3002<\/p>\n<p>Q3\uff1aDo you know the difference between Sakura\u2026 (which is now) independent living and in Euro or America.<br \/>\n\u3082\u3046\u304a\u3057\u307e\u3044\u306e\u6642\u9593\u3067\u3059\u304b\uff1f\u3014\u3044\u3044\u3048\u3002\u3015<br \/>\n\u65e5\u672c\u3068\u30e8\u30fc\u30ed\u30c3\u30d1\u3001\u82e5\u3057\u304f\u306f\u30a2\u30e1\u30ea\u30ab\u306e\u81ea\u7acb\u3057\u3066\u3044\u308b\u60a3\u8005\u306e\u9055\u3044\u306f\u4f55\u3060\u3068\u304a\u8003\u3048\u3067\u3059\u304b\uff1f<\/p>\n<p>A3\uff1aI heard about this life style from my senior patient. The most important thing is we know this way or not. So then, next thing how we\u2026 how to live.<br \/>\n\u79c1\u306f\u3053\u3046\u3057\u3066\u66ae\u3089\u305b\u308b\u3053\u3068\u3092\u5148\u8f29\u306e\u60a3\u8005\u304b\u3089\u77e5\u308a\u307e\u3057\u305f\u3002<br \/>\n\u4e00\u756a\u306e\u9055\u3044\u306f\u77e5\u3063\u3066\u3044\u308b\u304b\u3069\u3046\u304b\u3060\u3068\u601d\u3044\u307e\u3059\u3002<br \/>\n\u305d\u306e\u6b21\u306b\u5177\u4f53\u7684\u306a\u30b7\u30b9\u30c6\u30e0\u3092\u77e5\u308b\u3053\u3068\u3060\u3068\u601d\u3044\u307e\u3059\u3002<\/p>\n<hr \/>\n<p>\u4ee5\u4e0a\u3067\u3059\u3002<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Views: 750\u4ee3\u7406\u767a\u8868\u8005\u306e\u5b89\u9054\u3055\u3093\uff08\u4e00\u6a4b\u5927\uff09\u304b\u3089\uff0c\u5ca1\u90e8\u5b8f\u751f\u3055\u3093\u306e\u767a\u8868\u30b9\u30af\u30ea\u30d7\u30c8\u3092\u63d0\u4f9b\u3057\u3066\u3044\u305f\u3060\u304d\u307e\u3057\u305f\u3002 \u3053\u3053\u306b\u5168\u6587\u3092\u63b2\u8f09\u3044\u305f\u3057\u307e\u3059\u3002 \u5f8c\u65e5\uff0c\u65e5\u672cALS\u5354\u4f1a\u3088\u308a\u6b63\u5f0f\u306a\u30ec\u30dd\u30fc\u30c8\u304c\u3042\u308b\u3068\u601d\u3044\u307e\u3059\u3002 \u52d5\u753b\u3084\u5f53\u65e5\u306e\u6a21\u69d8\u306f\u3053 [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"sns_share_botton_hide":"","vkExUnit_sns_title":"","_vk_print_noindex":"","sitemap_hide":"","_veu_custom_css":"","veu_display_promotion_alert":"","vkexunit_cta_each_option":"","_lightning_design_setting":[],"footnotes":""},"categories":[1,5],"tags":[],"class_list":["post-5221","post","type-post","status-publish","format-standard","hentry","category-blog","category-research"],"aioseo_notices":[],"veu_head_title_object":{"title":"","add_site_title":""},"_links":{"self":[{"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/posts\/5221","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/comments?post=5221"}],"version-history":[{"count":13,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/posts\/5221\/revisions"}],"predecessor-version":[{"id":5237,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/posts\/5221\/revisions\/5237"}],"wp:attachment":[{"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/media?parent=5221"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/categories?post=5221"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.poran.net\/ito\/wp-json\/wp\/v2\/tags?post=5221"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}