Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

Life on the inside as a ‘locked-in’ patient

theguardian.com

Post reply on HN
Print view View original

11–20 of 52 posts

Re: Life on the inside as a ‘locked-in’ patient

#11

Post by dr_dshiv »

aborsy wrote: post #8
lordnacho wrote: post #6

I've been coming to terms with both my parents dying this year, and one of the eye opening things is how much worse it could have been. Seeking a bit of comfort, I went to different friends who I knew had lost a parent to speak about the experience. I hadn't expected it, but a couple of friends had truly traumatic losses. One of them was due to locked-in syndrome. After a stroke, my friend's dad had this happen to hi…

Having seen a similar case, this is truly a traumatic ordeal for the patient’s family (and possibly the patient too, though we don’t know how they feel in that state). Keeping such person alive is a huge project. A team of experts is needed, not to treat the patient, but to help prevent his/her situation getting worse. I mean, you need several people just to move the patient. Eventually, the support wears down and th…

My father passed away from a rare small cell prostate cancer last year. I didn't know at the time, but the median survival rate was 9 months -- and the rate hadn't changed since the 70s.

So, he had a little less than a year to get his things in order -- and then passed swiftly from complete liver failure. I look back and feel very blessed -- he had a really beautiful passing, which i didn't even know was possible.

Re: Life on the inside as a ‘locked-in’ patient

#12

Post by xwdv »

When you’re locked in, how do you know you’re locked in and not just dead, and this is what eternity will be like for you forever? Sure you might think you’re alive at first, but then what if you get a crazy idea that you died and you’re just a Boltzmann brain right now or something. Any way to prove you’re alive?

Re: Life on the inside as a ‘locked-in’ patient

#13

Post by yostrovs »

dctoedt wrote: post #10
throwaway_pdp09 wrote: post #7

Earlier quoted context omitted.

Please let adults evaluate the risks and make up their own minds. Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?

> Please let adults evaluate the risks and make up their own minds. I imagine Ellen would have appreciated the same opportunity to decide how she would spend that part of her life. (Ellen is the now-estranged wife of the locked-in guy; she spent months helping to care for him.) Ditto the taxpayers of Massachusetts, who had to foot the bill for millions of dollars of medical care for the locked-in guy. Those dollars c…

Other adults decided that they're going to take care of this guy. Whether the wife or the society of Massachusetts. That was their choice. That choice should not automatically impose limitations on 3rd parties that would like to make their own choices.

Re: Life on the inside as a ‘locked-in’ patient

#14

Post by nkrisc »

throwaway_pdp09 wrote: post #7
jtsiskin wrote: post #3

Earlier quoted context omitted.

Yes but make sure one of those things isn’t heroin

Please let adults evaluate the risks and make up their own minds. Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?

If they live out in the woods on their own, sure. Otherwise I'm fine being part of a society that has some restrictions we impose on ourselves.

Re: Life on the inside as a ‘locked-in’ patient

#15

Post by [deleted] »

nobrains wrote: post #9

I sympathize with Ellen. She knew she could not abandon him at his time of need, but when he started getting better, she knew her job was done and it would not be unfair if she moved on. She sounds like a good person. I would like to know more about the conversations that went on around their getting distant, and perhaps it was all in silent actions and not words.

[deleted]

Re: Life on the inside as a ‘locked-in’ patient

#16

Post by jquery »

xwdv wrote: post #12

When you’re locked in, how do you know you’re locked in and not just dead, and this is what eternity will be like for you forever? Sure you might think you’re alive at first, but then what if you get a crazy idea that you died and you’re just a Boltzmann brain right now or something. Any way to prove you’re alive?

I have the same fear. I think this is where social interaction would be absolutely key, even if as a vegetable I’m not responsive. Isolation would lead to insanity.

Regardless, if I was in such a state, I would like the option to self-euthanize. Assuming I had the ability to hear, they could use brain-scanning to figure out my ultimate desire in that area, and ask me on a regular basis if I wished to continue living as a locked-in patient.

Re: Life on the inside as a ‘locked-in’ patient

#17

Post by throwaway_pdp09 »

nkrisc wrote: post #14
throwaway_pdp09 wrote: post #7

Earlier quoted context omitted.

Please let adults evaluate the risks and make up their own minds. Otherwise it sounds like MPTP https://www.acsh.org/news/2017/01/12/frozen-addicts-garage-d... but that kills dopamine producing cells, so did he regrow these?

If they live out in the woods on their own, sure. Otherwise I'm fine being part of a society that has some restrictions we impose on ourselves.

Are you from the US? If so do you agree with US gun culture which "2017, [...] the [the CDC's] National Center for Health Statistics reports that gun deaths reached their highest level since 1968, with 39,773 deaths by firearm" (https://en.wikipedia.org/wiki/Gun_violence_in_the_United_Sta...)

One person paralysed by a contaminant (not heroin itself) = bad, but tens of thousands of deaths otherwise = ok.

I agree with laws and social restrictions if they are good ones that reflect the proportionate level of harm.

But you know this will go nowhere, unlikely you'll reply but this'll get downvoted because people aren't willing to face up to maybe being wrong.

Edit: none of this is about drugs or guns. It's about common sense and thinking for yourself. Drugs particularly are where aberrations in these show up.

Re: Life on the inside as a ‘locked-in’ patient

#18

Post by forgotmypw17 »

xwdv wrote: post #12

When you’re locked in, how do you know you’re locked in and not just dead, and this is what eternity will be like for you forever? Sure you might think you’re alive at first, but then what if you get a crazy idea that you died and you’re just a Boltzmann brain right now or something. Any way to prove you’re alive?

I experienced this briefly a decade ago, give or take.

Not much of a drinker or toker, I did a bit of both in the company of a friend.

I then vomited all over the bar we were in, passed out, and was taken by ambulance to a hospital.

You may know that it is typical for EMTs to assess and keep patient's mind active by asking questions, such as what is your name, today's date, during this type of situation.

Well, high as a kite and simultaneously blackout drunk, I experienced this as a detached consciousness in an endless black void, being questioned about my existence by the voice from the void about who I am.

It was something that stuck with me...

Be nice.

Cultivate positive thinking and keep fear in its place.

Re: Life on the inside as a ‘locked-in’ patient

#19

Post by amelius »

xwdv wrote: post #12

When you’re locked in, how do you know you’re locked in and not just dead, and this is what eternity will be like for you forever? Sure you might think you’re alive at first, but then what if you get a crazy idea that you died and you’re just a Boltzmann brain right now or something. Any way to prove you’re alive?

Isn't it so that the brain, merely by thinking, can still evoke physiological responses (heartbeat going up, respiration, transpiration) even when locked in? I can't imagine if you're very upset about something, the body wouldn't react in any way.

Re: Life on the inside as a ‘locked-in’ patient

#20

Post by morelisp »

throwaway_pdp09 wrote: post #17
nkrisc wrote: post #14

Earlier quoted context omitted.

If they live out in the woods on their own, sure. Otherwise I'm fine being part of a society that has some restrictions we impose on ourselves.

Are you from the US? If so do you agree with US gun culture which "2017, [...] the [the CDC's] National Center for Health Statistics reports that gun deaths reached their highest level since 1968, with 39,773 deaths by firearm" ( https://en.wikipedia.org/wiki/Gun_violence_in_the_United_Sta... ) One person paralysed by a contaminant (not heroin itself) = bad, but tens of thousands of deaths otherwise = ok. I agree wit…

This is a weird comparison. Most Americans both reject casual heroin use and support additional measures restricting gun sales.
Post reply on HN