Narcolepsy

I'm going to Japan for 3 months in a few weeks. I was diagnosed with narcolepsy and cataplexy a few weeks ago and I'm worried about the reaction in Japan.

I fall asleep a lot, and I have no control over it. I can literally fall asleep when I'm walking.

Also, when I get a strong emotion, I collapse and get paralysed for 2 - 3 minutes. I'm aware of everything around me but I just can't react to it.

I'm going to be staying in a dorm because I'll be at a language school, and they couldn't find any host families that felt comfortable dealing with someone with special needs.

I know it's probably a bit too late to be worrying about it now, but I can't help it.

I was thinking of maybe taking a card like the ones you see for the food allergies, but explaining why I've collapsed and wear it around my neck or something, but I'm not sure how to write it in Japanese... does anyone here know?

Sorry for rambling on so much...

Not sure why this is in language, and would explain why I didn't think it had got through, I thought I'd posted it in Others, sorry. I just reposted in travel because I didn't think it got through eep

I was thinking of maybe taking a card like the ones you see for the food allergies, but explaining why I've collapsed and wear it around my neck or something, but I'm not sure how to write it in Japanese... does anyone here know?

Aren't you asking for a translation? Perhaps that is why it's classified in the language section.

Maybe, didn't think of that... sorry

no problem! Sorry I can't help answer your question but I'm sure someone better suited will be able to help you out.

I suppose all you can do is inform the school, the dormitory staff, and eventually your classmates about the condition you have, typical symptoms, and what to do when you do fall asleep suddenly... then yes, carry the same information on a card and keep it with you at all times.

The symptoms have come to be known in Japan (there have been a few cases of train operator having this sleeping disorder), but I for one would not know what to do if someone fell right asleep in front of my eyes, besides calling an ambulance, but maybe this is not necessary - all that needs to be done is that you can just rest for a while in a safe place?

If you describe in a few sentences what you want to say, I can give you that in Japanese, but as another participant of this forum who help a lot with allergy issues always says, please do not rely only on anonymous forum for such important information, but always be sure to have someone you can trust verify the translation :)

Thank you very much AK.

It would depend on the situation. When I fall asleep I can be woken up as it's just normal sleep.

When I collapse it's like total paralysis. My muscles go week and I fall to the floor for 2 - 3 minutes.

I guess something like...

"I have narcolepsy, if I have fallen asleep please wake me." for when I fall asleep in a public place (which is certain to happen)

For when I collapse maybe something like

"I have a condition called cataplexy. I am not unconcious. My muscles have weakened because of a strong emotion. I will wake in 2 - 3 minutes."

Feel free to change them if that doesn't sound right ^_^;

Thank you again.

私は睡眠障害（過眠症）をもっていて、時々睡眠発作を起こします。もし私が突然眠ってしまったら、起こして下さい。

Watashi wa suimin-shougai (kaminshou) wo motte ite, tokidoki suimin hossa wo okoshimasu. Moshi watashi ga totsuzen nemutte shimattara, okoshite kudasai.

(I have narcolepsy - sleeping disorder - and I sometimes fall asleep uncontrollably. If I have fallen asleep suddenly, please wake me up.)

情動脱力発作（カタプレキシー）という神経疾患です。強い感情をきっかけにして、筋肉の力が抜けてしまいます。意識はあります。2,3分で元に戻ります。

Joudoudatsuryoku hossa (katapurekishii) to iu shinkei shikkan desu. Tsuyoi kanjou wo kikkake ni shite, kinniku no chikara ga nukete shimaimasu. Ishiki wa arimasu. 2, 3 fun de moto ni modorimasu.

(I have a neural condition called cataplexy. My muscles go weak triggered by strong emotions. I am conscious. I will recover in two, three minutes.)


One question - sorry if it's a stupid one - the difference between those two conditions above are whether your eyes would be open or not?

I have them in both romanized version and in kanji & kana (Japanese writing), and since medical terms like "cataplexy" and "narcolepsy" are more easily understood when written in kanji, if your PC is not Japanese-font capable, please have your school or someone print it in full kanji text.

Once again, please have it verified by someone you know and trust - maybe by your school upon arrival in Japan.

I fully agree with AK. Ask someone you really know the disease what you should do. A quick search on the disease told me that most of the symptoms are either controlled/eased by taking a medicine regularly. As I assume that you're seeing a doctor, specializing in the disease, discuss with him/her on your strategy. It would be hard to get necessary medicine in Japan, though it is not completely impossible. Or/and contact a support group on the disease and get info on how other members do/did when they are away from home country.l
There also is a support group in Japan, called ''Naruko-kai,'' based in Seiwa Hospital in Shinjuku, Tokyo. It may be a long shot but you may be able to get advices if you send an e-mail to them.
Naruko-kai:http://www2s.biglobe.ne.jp/~narukohp/
email:masatkuw (at) mtj.biglobe.ne.jp
Seiwa Hospital: http://www.seiwa-hp.com/
Unfortunately, the webpage is written only in Japanese but it has a list of hospitals which had/have narcolepsy patients. We can check it for you if you let us know which part of Japan you're coming.

Ask someone "who" really know...
Sorry for mistypo.

JLady,
you misunderstood my intention when I said please have it verified by someone she knew.... What I meant was to have the *translation* verified by someone she knew and trusted, not relying completely on anonymous online forum for something as important as this :)

And of course, yes, there are experts on this matter in Japan, so asking for assistance (maybe they have some information cards available too, who knows) would help too.

Oh! Sorry for my misunderstanding.

Thank you so much AK and everyone!

It is controlled by meds, but it can take a while to find the right combination that works. It's also hard to find some for me, as I have unrelated heart problems and one of the normal medications is dex anphetamine (sorry can't spell it) which I obviously can't take.

Hopefully it will have been figured out a bit more by the time I go though, it would be nice to expirience my trip to Japan and not just sleep through it hehe.

Also, the difference between the two attacks is, with one I'm asleep, and it's obvious that I'm asleep.

The second one I'm paralysed for 2 - 3 minutes and nothing will bring me out of it. I look like I'm unconcious, but in actuality I can hear, smell, feel etc everything going on around me, but I can't react to it until it wares off. So it does look different.

I hope you find a good combination of medicines before you come - I'm sure you're not going to sleep through the trip but even if the medicines don't help to stop having such symptoms, it would be good for your peace of mind :)

The reason I asked about the difference between the two is because I was trying to find some way to describe it so that a passerby could tell if you were "asleep" or "paralyzed"... maybe it might be an idea to just write "if you try to wake me up and if I don't, that means I am having the other kind of attacks which I am prone to...." and describe the second one. Sorry, I personally have not encountered anyone with these symptoms, so I'm probing around for a good description... I will come back later.

Thank you so much AK :-) I'm sure I won't sleep through the whole trip, but I'm hoping I don't miss anything too important hehe.

Before you go to Japan, consider seeing a doctor - there are some good medications for this condition - especially narcolepsy -that may help - I've know someone whose narcolepsy is under control now - If you can find a sleep disorders specialist they may be able to help.

For the two conditions, please add the following as the headers of the descriptions I've given earlier:

私が突然眠ってしまったら：
Watashi ga totsuzen nemutte shimattara:
(If suddenly I fall asleep:)


私が突然倒れて意識を失っているように見えたら：
Watashi ga totsuzen taorete ishiki wo ushinatte iru you ni mietara:
(If I suddenly fall and look as if I'm unconscious:)

Thank you so much AK :)

Not sure. But it makes sense to learn the illness in katakana as it isn't a Japanese word. Then say illess and apologise. byooki. If need be explain like 'fall asleep during day accidentally' in Japanese. But probably better to carry a picture & advice from a doctor that is translated.