[cantor_S_drug]

> When I re-read Flowers for Algernon recently I was just sad. The second half of the story, where his mind is going away, is just brutal, especially when he can remember how smart he was but knows it's gone for good.

https://news.ycombinator.com/item?id=21544149

"Von Neumann would carry on a conversation with my 3-year-old son, and the two of them would talk as equals, and I sometimes wondered if he used the same principle when he talked to the rest of us." - Edward Teller

I watched a documentary from the 80ies a long time ago. A mathematician (can't remember his name) who worked with von Neumann in Los Alamanos was interviewed. He described von Neumann's last weeks in the hospital - the cancer had already metastasized into his brain. The mathematician said something along this lines (I am citing from memory): "von Neumann was constantly visited by colleagues, who wanted to discuss their latest work with him. He tried to keep up, struggling, like in old times. But he couldn't. Try to imagine having one of the greatest minds maybe in the history of mankind. And then try to imagine losing this gift. I was terrible. I have never seen a man experience greater suffering."

Marina von Neumann (his daughter) later wrote this about his final weeks:

"After only a few minutes, my father made what seemed to be a very peculiar and frightening request from a man who was widely regarded as one of the greatest - if not the greatest - mathematician of the 20th century. He wanted me to give him two numbers, like 7 and 6 or 10 and 3, and ask him to tell me their sum. For as long as I can remember, I had always known that my father's major source of self-regard, what he felt to be the very essence of his being, was his incredible mental capacity. In this late stage of his illness, he must have been aware that this capacity was deteriorating rapidly, and the panic that caused was worse than any physical pain. In demanding that I test him on these elementary sums, he was seeking reassurance that at least a small fragment of this intellectual powers remained."

[Workaccount2]

Watching my grandmother slide helplessly into the dark mental abyss of dementia and then be lost inside it for years made me realize that it is downright inhumane to not offer end of life assistance to people.

[bluefirebrand]

I have conflicting feelings on it

On one hand, I had a similar experience with my grandfather. He eventually couldn't even remember to speak English, he reverted to his childhood language. When we translated, he thought I was a childhood friend of his, not his grandson. It was awful

But sometimes he would be so lucid and remember everything. It was so awful thinking that "he is still in there" the idea of him choosing to end it and not have those last few times to talk.. I dunno

During one of those lucid times was the most deep and important conversation I ever had with him. He understood what was happening and it gave him the freedom (courage?) to talk about things he'd never talked to me about before. It was so important to me as a young man, I cannot imagine if he had signed an end of life form and I never got to see that side of him before he passed

Selfish of me I know. But still. Maybe this really just highlights how important it is for people to really talk to one another when they are alive

[squigz]

> I have conflicting feelings on it

As ardent a supporter of assisted death as I am, I really don't think there's any other way to feel about it. You illustrate exactly why these types of choices will never be easy.

[bluefirebrand]

Yeah, to clarify I do support it. I think reducing suffering is a noble goal and allowing people to choose not to suffer needlessly is overall a good thing

But it definitely is not cut and dry and I can see why some people are extremely resistant to the idea

[tanewishly]

Where I currently live, terminally ill nearing their end often fall in a pattern of eating and drinking less and less, to the point of having nothing (not even water). This process of dying takes 1-2 weeks(!). Longer if some liquid is still imbibed.

This is a common ending of a terminally ill process and apparently seen as humane. Though I think if anyone treated their dog like that, we'd report them for animal abuse.

I don't have good answers to most questions surrounding this topic. But I'd like to get to a point where people are treated as humanely as their pets in their final period. And I can't even tell you the current practice isn't, just that it does not at all feel that way to me.

[squigz]

> Where I currently live, terminally ill nearing their end often fall in a pattern of eating and drinking less and less, to the point of having nothing (not even water). This process of dying takes 1-2 weeks(!). Longer if some liquid is still imbibed.

Even just getting to this point is usually a brutal period of pain. Then you have to die like that? It's frankly barbaric.

[b00ty4breakfast]

bit ironic, all this effort to extend life but it turns out that living that long isn't always so great so we start euthanizing folks.

I'm not saying it's wrong or right (I don't have a full opinion on the matter yet) but it seems very indicative of human endeavors more generally. Like a big a cosmic joke.

[0_gravitas]

There's a really big gap between 'living so long' and 'living with a lovecraftian deteriorating and debilitating disease'

[kcplate]

> In this late stage of his illness, he must have been aware that this capacity was deteriorating rapidly, and the panic that caused was worse than any physical pain.

I watched my father go through this (due to Alzheimer’s) before he passed away. He would say “I don’t understand why I just can’t think like I used to”. It was heartbreaking. He was a brilliant mathematician before the disease put him in a mental prison. It was pure torture for him.

[animal531]

When I was 20 I could come up with an idea and just sit and my computer and code it over however many hours without experiencing any issues.

If I was reading a book as a teen my eyes would eventually get a little fuzzy, but we're talking margins here.

Now I'm close to 50 and a confluence of things have hit me. I figured out that I have a crippling case of ADD (who knew?) and the medication has been amazing. I really want to code more and have so many ideas and things I want (and financially speaking need) to work on, but my eyes are taking a tremendous amount of strain, so in the end a whole portion of the gains feels as if they're being wasted.

The old brain is at least still firing, when that begins to go I'm not sure what I'm going to have left.

[squigz]

Now keep in mind that that frustration - the absolute torture of losing who and what you are - applies to everyone going through something like this, not just the greatest minds of their time.

Makes me glad that we're starting to look at assisted dying more seriously...

[tough]

why not try to cure alzheimer or other mental diseases that show up on the elderly instead?

[mrshadowgoose]

Do you genuinely believe that this is a binary decision, or is this just anti-euthanasia rhetoric disguised as concern trolling?

Offering humane end-of-life options to people suffering today does not prohibit ongoing disease research towards potentially helping people in the future.

[sinenomine]

It's not entirely binary, but there is an obvious unpleasant tendency in e.g. Canada, to soft-push MAID onto potentially treatable patients who don't even seek medically assisted death.

I wouldn't want my government to have an option of dealing with the problem this way, and if I needed MAID, I'd just self-administer.

[tough]

Yes, it's a slippery slope once a state providing assistant to suicide is law imho.

It just doesnt seem something a state should be charged with.

[bryanrasmussen]

I doubt you can cure these diseases, you can perhaps prevent them, but to cure would mean removing their effects, and if you could remove their effects and say, bring a seriously deteriorated Von Neumann back to his previous mental heights it seems like you should be able to make anyone the equal of Von Neumann - which I agree would be a great thing to be able to do but seems to be a much further along than the words cure or prevent would indicate.

[squigz]

> I agree would be a great thing to be able to do but seems to be a much further along than the words cure or prevent would indicate.

If the words "cure" or "prevent" don't indicate that, why did you bring it up? :)

I think this is being needlessly pedantic. Keeping in mind that one of HN's guidelines is to respond to the strongest plausible interpretation of a comment, I think we can assume that GP meant, essentially, "learn enough about these diseases so as to detect and prevent them from causing irreparable damage"

[bryanrasmussen]

sorry but the strongest plausible interpretation of the word cure is obviously not "prevent", it is to undo the damage.

>If the words "cure" or "prevent" don't indicate that, why did you bring it up? :)

the strongest plausible interpretation of my comment would be I brought it up for the reason I said - that if you could cure the disease you would have to be able to give anyone the capabilities the disease destroyed (because these diseases seem to destroy parts of the brain so even if you "brought back" the brain it would be a different brain with different data in it)- and that, although I did not state it, I felt that the original poster had not considered this when they expressed a wish to cure.

on edit: obviously if you have experienced minor damage you can get back to what you were before because the brain has a lot of redundancies and it can recover if decline is halted, but if you have experienced major damage you're probably not getting back and asking for a cure there seems unlikely to work.

[ElevenLathe]

The "disease" we're talking about here is death. Von Neumann was losing his mental capacity because he was dying. I know some in the silicon valley set think that "curing" death is both feasible and desirable but I disagree on both points.

[sinenomine]

A voice from outside SV (mine): We can extend life and prevent disease in animals and should do the same in human beings. As much as the West has exclusive access to biomedical R&D, it's an ethical imperative for the West to pursue this goal on behalf of humanity as a whole.

You invented noblesse oblige and should measure up to it.

[tough]

no death is just part of life, there's no life without death.

the disease would be alzheimer, and curing it would mean probably preventing it / being able to edit the genome to nullify whatever gen is making it come up in the first place (if its genetic)

[tough]

Yeah tbh english isn't my first language, and I meant more into -finding the causes- and eradicating alzheimer, aka preventing it, much like we have done with polio, or whatever.

Not really curing people already in advanced state of the maladie...

anyways, they're not mutually exclusive, but enhanching life should preceed ending it in the order of priorities imho

[bryanrasmussen]

Ok sorry about the mistake, I just made the observation as a small aside, thinking perhaps you did mean cure as in totally revert damage.

[globnomulous]

You shouldn't apologize. You didn't make any mistake that I can see, and your comment is kind and patient.

[tough]

yeah no worries at all, i appreciate your comment and the conversation it opened up!

[sinenomine]

With all due respect, you didn't even try at anything resembling full effort. There are 2, maybe 3 societies in the world, which have (or had) the capacity to try implementing a serious R&D effort to prevent the diseases of aging. The effort has been meager so far, and ultimately, compared to other major R&D directions (no, I'm not talking about AI, AI is fine), it's a testament to how much we value ourselves and our loved ones.

As an adult who already lost a few of my relatives, and will probably lose a few more: if we truly loved them, we'd have put at least 10% of GDP into eventually curing all degenerative diseases, while implementing a simple scalable cryopreservation infrastructure for those who won't be there in time.

It could be done, The West and Asia could achieve this. But didn't, due to all too well known web of aversion & coping mechanisms.

In your small-mindedness you failed humanity.

[bryanrasmussen]

>With all due respect, you didn't even try at anything resembling full effort. There are 2, maybe 3 societies in the world, which have (or had) the capacity to try implementing a serious R&D effort to prevent the diseases of aging.

exactly who do you think I am? It sounds like you think I am some sort of avatar of one of these societies, and for some reason I am here posting on HN.

>while implementing a simple scalable cryopreservation infrastructure for those who won't be there in time.

ok, well as long as its simple.

>In your small-mindedness you failed humanity.

okey-dokey, well I can definitely see you are going through something right now, hope you get better.

[cjbgkagh]

There is a world of difference between removing an inhibitor and adding an enhancement.

[bryanrasmussen]

since these diseases destroy parts of the brain not just inhibit the functioning of the brain you would need to add an enhancement and not remove an inhibitor to bring back lost functionality.

[cjbgkagh]

Depends very much on the disease, for my specific type of brain fog from dysautonomia (via ME/CFS and hEDS) it may feel like a gradual and permanent degradation but it is largely completely reversible and when you know what you're doing it's actually pretty easy to do so. This is only known by a very small minority of doctors so the chance a specific patient meets such a doctor is incredibly low which is why most people still think it's some great big mystery. I was able to remove the inhibitor and bounce back better than ever. I think the brain fog in my case was caused by excess IL-1B pro-inflammatory cytokines and directly targeting that with medication did result in the brain fog near permanently lifting.

It’s also likely that even if the degradation is permanent it is also likely multifaceted and one of those facets is likely to be treatable such that the impact of the degradation could be greatly reduced. I think it’s incumbent on us to try as much as possible even in the seemingly lost causes because learnings from such attempts could yield insights for those who are not lost causes.

It’s a ridiculous conflation to suggest that the inability to take a regular person and give them Von Neumann intelligence means that we can’t help Von Neumann stuffing an ailment even if a component of that ailment is clearly permanent.

[sinenomine]

1. As other commenters point, many cases have intact memory and circuits for what would be considered "lost", which activate from time to time. So it's likely a question of SNR and tissue vitality (e.g. basic capillary function) for these cases.

2. You wouldn't believe what feats of neuroplasticity lie behind a few receptors properly pushed by molecular keys. We just don't have experience to describe it. Adult neuroplasticity and (disproven btw) neurogenesis is a rigid sad joke compared to what's possible.

[squigz]

Are these mutually exclusive ideas? Can we not pursue research in this area while not forcing families to watch their loved ones slowly lose their mind and wither away?

[tough]

I guess we can explore both, but I'd ask you to research how these laws are already affecting families too in new ways on places where eutanasia is already legal.

It's easy on older -about to die-, people, but what about not such clear cut cases, some families are actually against their beloved ones taking their lifes, and the state allowing it, (Parents suing their offspring, to try and not have them do it, for example)

and yes, a judge rules out on such cases, but to me, well, i dont see why the state should -sanction- taking your own life, when is something that shouldn't be natural, there's medical cases for sure, but laws sadly aren't perfect, i'd rather have no one wrongly off themselves

[squigz]

> I guess we can explore both, but I'd ask you to research how these laws are already affecting families too in new ways on places where eutanasia is already legal.

Can you provide some reading? Because this doesn't really mean much by itself.

> It's easy on older -about to die-, people, but what about not such clear cut cases, some families are actually against their beloved ones taking their lifes, and the state allowing it, (Parents suing their offspring, to try and not have them do it, for example)

Then those families can talk about it and the person dying can make their choice. The families who don't like it can do what they want, just like those who do want it.

> when is something that shouldn't be natural,

Almost nothing about our modern life is "natural", including most of medicine. That said, how is death unnatural?

[tough]

> Almost nothing about our modern life is "natural", including most of medicine. That said, how is death unnatural?

only meant having to bear the death of your child before you, usually a parent dies first, although i guess infant mortality rates where much higher until recent times...

this recent case what i was thinking specifically https://www.elconfidencial.com/espana/2025-03-17/justicia-av...

[1123581321]

It will be mutually exclusive along some class line if we try to pursue both. Additionally, without the desire to preserve life and value of the advantages of aged minds, we will not make as much progress on the disease.

[squigz]

Well, we are not "trying to" pursue both - we actively are. Anyway, there certainly is much discussion to be had about class discrimination in medical care, but that seems out of scope for this thread - not least because of very simple things like some country's healthcare systems being radically different than others.

> Additionally, without the desire to preserve life and value of the advantages of aged minds, we will not make as much progress on the disease.

I'm not sure why you think that easing end-of-life suffering would lead us to stop preserving life?

We're also not talking about "aged minds," we're talking about damaged minds - and even if we were, we're not talking about de-aging or anything like that.

[1123581321]

I appreciate the response. I said “trying” because neither the disease research or the policy change has broadly succeeded yet, and I don’t think either are certain.

[yapyap]

because assisted suicide is a bit more damn easy than “curing alzheimer”

why not cure cancer while you’re at it

[tough]

well I didn't ask which one was easier but more worthy to pursue

[Forgeties79]

We haven’t yet and likely won’t for a lot of people who, to be blunt about it, would quite literally rather die than lose their mental faculties. Ultimately it’s their choice. Honestly it doesn’t strike me as all too different than a DNR.