DLB (dementia with lewy bodies) Forum 2015 in Tokyo, Japan 

　　　　　　　「”本人”になって初めてわかったこと」　　　樋口直美    “What I now know as a person with DLB”  Naomi Higuchi

               　　　　　　　　　Translated by Ms Nanami Akimoto　

2015年1月「レビーフォーラム2015」での講演を秋元七生さんが英訳して下さったものです。この講演をきっかけに『私の脳で起こったこと　レビー小体型認知症からの復活』（日本医学ジャーナリスト協会賞優秀賞受賞）を上梓できました。講演の全文とスライドはこの本に納められています。

資料：この講演で使用したスライドhttp://www.slideshare.net/naomihiguchi750/2015-44027704?related=2

資料：講演動画（認知症スタジアム）http://dementia.or.jp/library/8442/

資料：収録されている書籍　http://www.amazon.co.jp/dp/4893088432

資料：記事とリンク集　http://ninchisho-online.com/archives/13315/

みなさん、初めまして。樋口直美と申します。トム・クルーズと同い年の52才です。50才の時、レビー小体型認知症と診断され、治療を始めました。

Hello everyone, my name is Naomi Higuchi. I am 52, the same age as Tom Cruise. I was diagnosed with dementia with lewy bodies (DLB) and started to receive treatment when I was 50 years old.
　　　　　　　

　＜会場スクリーンの画像＞　これは、レビー小体型認知症の症状の一部です。病名が長いので、以後、レビーと省略させて頂きます。レビーは、人によって、出る症状も出方も違います。私は、よく超初期と誤解されますが、発症は11年前だろうと医師から言われています。しかし現在も記憶力、思考力の低下は、ありません。

　<Image shown on screen> These are a few of the symptoms seen in DLB. Individual symptoms as well as how they manifest differ from patient to patient.
People often make the mistaken assumption that I have very-early-stage DLB, but my doctor’s assessment is that I have had DLB from around 11 years ago.  Even so, my memory or intellectual capacity has not shown any signs of decline.

「認知症」という言葉は、元々、病名ではなく「認知機能の低下によって自立した生活が困難になった”状態”」を指す言葉です。

The word “dementia” is originally a word that describes a “situation” where it becomes difficult for a person to continue living independently due to the decline in cognitive functions, not a “name” for a disease.

その意味では、私の病名は、レビー小体型認知症ですが、私は、認知症ではありません。私だけが特別なのではなく、レビーと診断されて、私と同じ様な方は、大勢いらっしゃいます。この病気は、認知症ではなく、一種の「障害」だと、今は、受け止めています。

In that sense, my diagnosis is “DLB” but I do not have dementia.　I am not alone in this. Many people like me have a diagnosis of DLB but do not necessarily have dementia.  I think of this disease not as dementia but as a type of “disability”.

先月、まずタイトルを決めるように言われた時、自分のことを何と呼ぼうかと、ちょっと悩みました。患者？ 病人？ よく使われる当事者？　3つとも、かなり、変です。でも３択で「 本人」にしました。

Last month when I was asked to decide on a title (for this talk), I had trouble thinking how I should call myself.　Patient? Sufferer? Or the often used phrase “person with dementia” ?　All three are odd for me.

本人になって初めて分かったこと。沢山あります。「認知症の人」という呼び方が「おかしい」と感じるようになったのも本人になってからです。

There are many things that I have come to realise since being “a person with DLB”.　I only started to feel that calling someone a “person with dementia” is wrong when that “person” became me.

テレビで専門家が言います「認知症の人は記憶できません新しい事は覚えられませんでも感情は残っています」。病気の種類も、進行の度合いも無視して、十把一絡げに「認知症の人」です。

Dementia specialists say:“People with dementia can’t memorise things and can’t learn new things, but they do still have emotions.” They make these kinds of blanket statements where people are classified as just “a person with dementia”, ignoring the different types of disease and the varying stages of symptoms.

レビーの症状は、アルツハイマー病とは、異なります。レビーでも、高齢の方で記憶障害が強い方はいますが、レビーの場合、進行しても記憶障害が軽い方が少なくないそうです。新しいことも覚えられます。このスライドも今回初めて作り方を覚えて、一人で全部作りました。イラストもです。

The symptoms of DLB are different from those seen in Alzheimers disease.　There are some elderly patients of DLB who suffer from severe memory loss, but it is said that many patients with advanced DLB do not have much loss of memory.　They can also learn and memorise new things.　I studied how to make a presentation and made these slides all by myself, including the illustrations.

②認知症と診断される意味 ② the meaning of a dementia diagnosis

今、色々な方々が、一生懸命正しい情報を発信して、少しづつ変わっては来ていますが、それでも「認知症恐怖症」は、日本中に蔓延しています。

These days many people speak publicly to share their stories and to spread correct information about what it means to live with dementia. Although this is helping to gradually change the public’s perception, there is still a wide spread “fear of dementia” in Japan.

認知症のイメージ（スライド参照）

How a lot of people (including doctors) perceive dementia
Brain cells continue to die off. Symptoms will only progress with no possibility of recovery, steady decline of abilities.
The person will lose their intellect and personality. They will start to act and say random things which will cause problems for those around them.
The person will not know who they are anymore - dementia is a terrifying illness that no one wants.
I realise that none of the above is true, only when I experience DLB first hand.

これら＜スライドNo8＞は、よく「偏見」と呼ばれますが、私は違うと思っています。これは、多くの医師の共通認識だと思います。それを私たちはメディアを通して教えられ、最近、また強化されているように感じます。

People say the things listed (on slide 8) are prejudices, but I think differently.
I actually feel this is what many doctors think about dementia.
These ideas are spread to the public through the media, and I feel that recently, this mistaken understanding is being reinforced.

認知症は、脳が萎縮する病気だと多くの方が思っていますが、レビー場合、脳は、ほとんど萎縮しません。最期まで、「その人らしさ」は、失われないと聞いています。

Many people think that dementia causes cerebral atrophy.
But actually, almost no cerebral atrophy is seen in DLB.
I hear that in DLB people never lose their “sense of self”, the “essence” of who they are.

「段々色々なことが出来なくなるのはどんな気持ですか？」とよく聞かれますが、私の認知機能は、去年からどんどん改善しています。できなかったことも、今は、できるようになっています。

I often get asked what it feels like to know that I will gradually lose many of my abilities.
But actually since last year, my cognitive function has been improving greatly.  There are things that I can do now that I could not before.       

スライド「私の経過」参照

My Personal Experience
For several years I experienced waves in my health, and sometimes unexplained excruciating pain
I went to a doctor with symptoms of insomnia, headache and fatigue was wrongly diagnosed with depression (2004).
The treatment I received for depression made things dramatically worse. For six years I experienced a decline in my cognitive functions due to the side effects of medication.
I stopped taking any medication for depression, and started to feel much better. However, once again I started to experience waves in my health. Start to recognise I was having hallucinations.
I had a full check-up and MRI scan, but anything particular showed up on the scans so I did not get a diagnosis or receive any treatment (2012).
Eight months on I was finally diagnosed with DLB based on my symptoms. I started to receive treatment and my health improves (2013).

I discover that there are things I can do to improve symptoms and start doing them, so my condition continues to improve. I stop having hallucinations and cognitive functions improve.

私が正しく診断され、抗認知症薬で治療を始めたのは、1年7ヶ月前です。　レビーと診断された時、「進行を遅らせるために私ができることは何ですか？」と聞きました。

「ないんですよ。ただ今までの生活を続けて下さい」と言われました。

It has been a year and seven months since I was correctly diagnosed with DLB and started to receive treatment with anti-dementia medication.　When I first received my diagnosis, I asked the doctor if there was anything I could do to delay the progression of DLB.　The doctor told me “There is nothing you can do. Just continue to live your life as before.”

自分でレビーを疑って、レビーについて詳しく調べ始めたのは３年前ですから、診断された時は、冷静でした。でも、当時、若年性レビーの情報は、ほぼ皆無でした。唯一見た症例は、どんどん悪化して、衰弱して・・という絶望的なものでした。

Because I had already suspected that my symptoms might be from DLB, and had started to research DLB three years ago, I was able to stay calm when I received my diagnosis.　However, at that time there was hardly any information about DLB.　The case studies I did find painted a very bleak picture of worsening symptoms, deterioration of heath and …..

たった２年前のことですが、まだ「ためしてガッテン」でレビーを紹介する前で、ほとんどの人にとって、レビーは「聞いたこともない病気」でした。私は、この病名を、人には話せないと思いました。誤解はされても理解されることはないだろうと思いました。

This was just two years ago, but before the NHK (Japanese Broadcasting Corporation) had broadcast a programme on DLB, so DLB was an illness that almost no one had heard of.　　　　　　　　　　　　　　　　　　So I felt that I could not tell people that I have DLB.　I did not think people would understand, and that they would get the wrong idea.

深い渓谷に一本の長い平均台が続いていて、その上に一人で立っている気がしました。自分さえ気をしっかり持って、上手く歩けば大丈夫と思うんですが、圧倒的な恐怖感と孤独感を感じました。逃げ道はどこにもなく、進むか、落ちるか、どちらかしかないのだと、毎日思っていました。

It felt like I was standing alone on a very long balancing beam set across a deep valley.　I tried to tell myself I will be alright as long as I stay strong and walk across carefully, but I felt tremendous fear and loneliness.　There was no escape.  I would either have to walk on alone or fall into the deep valley.

でも、その後、家族会「レビー小体型認知症介護家族おしゃべり会」の加畑さんからアドバイスを頂き、話を聞いてくれる人と出会い、同病の人と出会い、友人に病名を伝え始め、家族に支えられ、渓谷なんて最初からなかった、私が一人で作り上げた幻想だったとわかりました。

But after a while I met Ms Kahata who started a support platform for carers and families of people living with DLB. She gave me valuable advice and I met people who would listen to my story and others people living with DLB. From there I was able to tell my friends about my diagnosis and be supported by my family, and I realised that the deep valley I had imagined for myself had never really existed.

一時期は、簡単な計算ができないとか、1度に２つのことを同時にできないとか、色々な症状が次々と出ましたが、今は、ほとんどありません。

　
There was a period where I experienced various symptoms like not being able to calculate the easiest of sums, or do two different things at once, but the phase passed and now I hardly ever have such symptoms.

③自律神経障害と意識障害
③ disorders of the autonomic nervous system and consciousness

今困っている症状は、この病気の特徴である自律神経障害です。血圧、心拍数、体温などを一定に保てません。

One of the things troubling me at the moment Dysautonomia (autonomic nervous system disorders), a characteristic symptom of DLB.　My blood pressure, heart rate and body temperature is all over the place.

「体調に波があって…」と言うと「誰でもあるよ」とよく言われますが、血圧の上が、80を切ったり、夏でも汗が出ずに発熱したりして、日常生活に支障をきたします。汗が出過ぎる人もいますし、失神を繰り返す人もいます。暑さ寒さや気候の変化等にとても弱くなります。

If I say “some days I feel good, and some days bad…” people often reply “everyone has that”. But what I am experiencing is my systolic blood pressure falling below 80, or my body overheating in the summer from anhidrosis, which makes it difficult to lead a normal everyday life.　Some people experience hyperhidrosis, others have recurring fainting.　The body becomes more vulnerable to changes in the temperature and seasons.

レム睡眠行動障害といって寝言を叫んだりする初期症状がありますが、それ以外にも不眠や無呼吸や医師もよく分からない様々な不思議な睡眠障害があります。

There are early stage symptoms such as Rapid Eye Movement Sleep Behaviour Disorder (RBD) which cause very loud sleep talking, but also other strange sleeping disorders such as insomnia and sleep apnea which even doctors cannot explain.

でも、「見えない障害」ですから電車の中で辛くなっても、高齢者のようには、席を譲ってもらえません。

But because DLB is an “invisible disability”, even if you are feeling unwell on the train, people will not offer you their seat as they would for an elderly person (who can be recognised visibly).

そして自律神経の影響だと思いますが、脳の血流が突然低下するために、意識障害を起こします。急にひどい疲れや、だるさや、眠気を感じます。脳貧血とか風邪で発熱した時の感じによく似ています。熱くはないです。熱と同じで段階があります。ひどい時は、倒れるように眠ってしまいます。

There are also symptoms of disturbances to the consciousness.  I think it is caused by sudden reduction in blood flow to the brain, which is to do with the autonomic nervous system.　I experience acute fatigue or drowsiness.　It feels similar to cerebral anemia or having a cold and running a high fever, although there is no rise in body temperature.　Just like a fever, there are stages. When it is really bad, I will just collapse into a deep sleep.

意識障害を起こしている時は、注意力が、ガクッと落ちます。誰でも高熱の時に筆記試験なんて受けたくないですよね？それと全く同じことが意識障害の時に起こります。頭が上手く回転しないんです。

When I am experiencing disturbances to my consciousness, my levels of attention fall drastically.
I do not think anyone would want to sit an exam when they are running a high fever.
That feeling people have when they have a fever, is exactly what I am feeling like when they are experiencing disturbances to their consciousness. The brain just will not work as usual.

治療直前は、それがひどくて、寝たり起きたりの生活でした。その頃も記憶障害は、特にありませんでした。抗認知症薬を使うようになってすぐ、体調が改善しました。

Before I started to receive treatment, I had these symptoms almost all the time everyday.   But even during that time, I did not have much memory disorder.　　As soon as I started taking anti-dementia medication, there was an immediate improvement in my health.

医師にも分からないと言われましたが、
これは、レビー特有の「認知の変動」ではないかと私は思っています。「とてもしっかりしていた人が、突然ぼーっとする」と説明されます。でも本人は、かなり苦しく、不快だということが、なってみて、初めてわかりました。

Even the doctor could not explain the sudden change, but I am coming to think that this “fluctuation in cognition” is characteristic of DLB.　　People describe the symptom as “people who were bright suddenly turn into zone out”.　But now that I have experienced it first-hand, I know that for the person actually going through it the feeling of zoning out is a very horrible and distressing experience.

そして、高熱がある時と同様、そんな時でもちゃんと、周囲で起こっている事も、そこにいる人の気持ちも全部わかっています。ただ、朦朧としていて、受信はできても、発信用の回線がオフになっている感じで、反応できません。

I would describe it as being just like when people feel spaced out with a high fever but are still aware of what is happening around them as well as what other people are thinking.
But the grogginess makes it difficult to respond. It is like a switch has been turned off so I can receive but not transmit.

周囲からは、なんだか魂がどこかに行っているように見えるので、＜顔の前で手を振るジェスチャーをする。＞……っという感じだと言われます。これは、治る時も突然治ることが多いです。パッと体が楽になって、元に戻ります。停電が終わって、回線が繋がった感じです。

The people who have been around me in that state say that it looks as if my soul has left my body, so they wave their hands in front of my face to see if I show any signs of response.　　The funny thing is, just as it is impossible to predict when the grogginess might come on, recovery from the state is sudden too. All of a sudden I feel well again as my cognition returns.

私は、自分の体の中に「飼い虎」がいるとイメージしています。
それが暴れ回っている間は、ぐったりして何もできません。でもトラはネコ科です。上手く付き合えば、ゴロニャ〜ンとしている時も多いんです。そういう時は、体調も良く、頭も何の問題もなく、回転しています。自分は、健康で、全く正常な人間だと感じられます。

I think of it as having a pet tiger in my body.
When the tiger is raging around, I feel exhausted and cannot do anything. But a tiger belongs to the cat species.
If you can get along, a lot of the time it will act friendly and playful.　　At those times I feel physically very well, have no cognitive problems and am fully alert.　I feel that I am a healthy and completely regular person.

④に続く。（④幻覚はどう見えるのか。幻覚はなぜ起こるのか）
Continues to ④ (④ what do hallucinations look like? why do they happen?)