Me an' Algernon – grappling with (temporary) cognitive decline(tidyfirst.substack.com) |
Me an' Algernon – grappling with (temporary) cognitive decline(tidyfirst.substack.com) |
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."
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
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.
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.
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.
Makes me glad that we're starting to look at assisted dying more seriously...
I got on antidepressants and that helped, though it came with it's own set of problems. I started seeing counselors, reading self-help books, I went through 6 months of cognitive behavioral therapy for insomnia (CBTi), working with a neurologist to get migraines under control, seeking help wherever I could. It has been a slow process but I'm doing a lot better. I'm still nowhere near where I was cognitively. In fact I don't know that has improved much at all. And it's only been in the past year that I've began to understand my decline as a result of jumping into marriage, fatherhood, and home ownership without the necessary skills to handle them. I'm hopeful things will continue to improve, I've learned an enormous amount about life, fatherhood, marriage, love, forgiveness, hope, and priorities.
If you are a young parent, or considering being a parent soon, work on yourself. Ensure you have the skills you need or your life (and the lives of those near to you) will become a bag of utter despair filled with shit.
The characteristic brain fog seems to be tied to dysautonomia and excess IL-1B pro-inflammatory cytokines. I treat the latter with a strict no sugar diet, and high doses of D3, TUDCA, and DIM. I treat the dysautonomia with LDN, modafinil, amitryptiline, and a low dose of semaglutide (ozempic).
Does it work?
I experienced a period of severe cognitive deficit while recovering from a medical episode. We didn't know whether it would be permanent or not. I also discovered - as a fellow my-IQ-is-my-identity person - that it didn't matter anywhere near as much as I'd have expected it would. I was still able to experience love, and joy, and humour. Some things sucked, and were frustrating, like not being able to retain enough information to read a moderately-complex piece of prose, but the point is that I still felt like myself, even at a very low cognitive level. I'm immensely comforted. I expect I'll experience that again, as I (hopefully!) age, but it holds no particular terror anymore.
After a while they halved the prescription and after a few hours I could feel my words returning. It was terrifying to feel my IQ rise substantially. Before I left eh hospital they gave me various cognitive and mental tests and it was reassuring to be told that I was in the 96 percentile of my peer group (college educated, engineers)
We deal with a parent with dementia and another with a stroke. The difficult part with all of these are not really seeing the decline from the inside, sometimes there are the acknowledgment of hints of decline but mostly you don't want to think about it and compensate as best as you can.
I remember having a particularly nasty dentist visit after which I kept myself stuffed with a painkiller i hadn't head of, on her instructions. Then going to the corner store and forgetting why I went there.
Permanent cognitive decline is another, much sadder, topic.
I usually skip this portion of the cocktail unless things are particularly bad. The disorder is progressive, so when it comes for my brain, well, that's when things are over. I do not have much going on for me in terms of personal value except for, well, solving problems.
A very close friend of mine has had two hospitalizations for gangrene, and the second one absolutely devastated his cognitive abilities. He has leveled off at about eighty-five percent of where he was before. If he is tired or feeling unwell, verbal perseveration begins.
My mother is fairly well-on in her years. She used to have a tremendous vocabulary, despite her very limited education. Now, she has begun to lose words and I end up "translating" for her because I know what she is getting at. She could do crosswords but refuses to, even the Monday selections, which are typically the easiest. Very recently, she has begun misplacing things. I had my suspicions, and during a routine head, neck, and brain imaging for something else, I checked out the results and, sure enough, some loss of volume in the right hippocampus.
My performance has been going down, my anxiety and stress are through the roof. Honestly you wouldn't know it from talking to me, other than the fact my memory is shot
I'm completely forgetting stuff minutes after it happens
I'm very unhappy with the feeling, and I hate going on leave for this, but I have to. I'm not even 40 and this is the second time in my life I've burned out hard like this
It was terrifying. I had just seen my mom taken by Alzheimer’s (or something similar) way too young, and thought my life was over.
All the tests coming back negative, making a point of hanging out with friends, returning to the office, and getting enough sleep seemed to help, and it slowly started getting better.
But it got better, and I'm in a better place now. It felt like I'd never get there; always tiny improvements but not quite there. Last year I finally felt the burnout gone. I stopped being so cynical. My life was better already, but still my mind was not quite there yet.
Now just this year I've rekindled my curiosity, using my free time again for little projects, not leaving piles of unfinished stuff around the house, it's something that's even noticeable from the outside - the little things. So now, moving forward, I take it easy, forgive myself, try again and don't subject myself to unattainable benchmarks.
Offering humane end-of-life options to people suffering today does not prohibit ongoing disease research towards potentially helping people in the future.
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.
It just doesnt seem something a state should be charged with.
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"
>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.
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
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.
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.
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
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?
why not cure cancer while you’re at it
You invented noblesse oblige and should measure up to it.
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)
> 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.
I mostly wanted to share my current state so if other people reading also recognize themselves in it, hopefully they realize it isn't normal and they also go seek help
As for me I will be okay. I've been through this before on my own and managed. This time I have a partner to help me through too
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.
How did you do this? Have you been able to solve the PEM issue?
sorry, I thought we were talking about Alzheimer's because Alzheimer's was what was mentioned in the post I responded to but now I see it is in fact every ailment that affects the brain, and not just Alzheimer's.
>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.
this might be what was meant here, https://news.ycombinator.com/item?id=44277444 - when I said that the brain has a lot of redundancies and of course caught and stopped early enough then it wouldn't be such a big problem
but hey, what do I know, I didn't even know what we were talking about evidently, thanks for correcting me.
>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.
OK well I guess I am taking a more stringent meaning of cure than you are, you are taking the relieve meaning, which is of course to help, but I am taking the revert meaning. I believe mine is a pretty common meaning, at least in the vernacular. I mean when they say we cure cancer they don't mean it will make the pain less intense and maybe you can live twice as long as otherwise.
Certainly I believe the pains and problems of a disease can be relieved, but in the case of Alzheimer's (sorry for going back to the disease I was discussing since you have informed me I was not discussing that but since I was, actually, discussing that I am just going to have to stick with it) it can not necessarily be reverted - it can potentially be reverted as I indicated earlier if not too much damage is done (because of redundancies), but if for example you have late stage Alzheimer's I don't believe you are going to get to cure (revert) all damages.
In such cases you can manage to stop it and rehabilitate the patient to a less damaged earlier state perhaps, but otherwise I would think there was too much damage to revert it, because if brain tissue is too damaged I suppose (perhaps again due to a naive model of how I suppose memories and knowledge are maintained in the brain) that the data that was held by these damaged sections is now unrecoverable.
on edit: removed some verbiage.
You're hung up on the binary cure or not cure. It would be like doing a machine learning problem with a binary loss function, might as well try to make it better and you'll learn things on the way that could lead to a cure i.e. you'll have a smoother gradient that'll make advancements easier.
Most doctors know next to nothing about ME/CFS and I suspect they know a similar next to nothing about Alzheimer's so when they say there are no treatments I don't believe them. It's a dysfunctional industry backed by a dysfunctional academic system combined with a dysfunctional political system. If you do the similar research that I did on ME/CFS you'll find that many of the same rules apply to Alzheimers which suggest to me that it's likely auto-immune related, I don't need to know the actual mechanism for it for me to see that empirically it presents in a way that looks like auto-immune. Then empirically it appears that GLP-1As are really good for auto-immune so transitively I highly suspect GLP-1As will helpful here and in-fact the FDA has approved a GLP-1A for the treatment of Alzheimer's so I'm not the only one who thinks this.
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.
where your point 1 is concerned, again, since the brain has many redundancies one can totally have brain tissue destroyed and with some slight therapy get back to normal functionality, but when Alzheimer's is too advanced I suppose you will not be able to fully revert, but maybe revert to some earlier stage - sure.
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...
> He added that his daughter suffers from mental problems with suicidal tendencies and constant changes of heart, and therefore needed psychological treatment, not assisted death.
> "The patient's capacity to make decisions has also been verified," the ruling states, "by the attending physician and the psychologist at the Hospital Residencia . The plaintiff has not presented any evidence that could refute the conclusions of these reports. They show that Noelia retains her capacity to make all types of decisions, including, therefore, the decision to undergo euthanasia."
This is a terribly sad situation all around, but I don't see this as evidence for why euthanasia laws are bad. The best I can see is that this highlights that we shouldn't push euthanasia as a solution to every lifelong disability, but that s a social/cultural issue, not a legal one - and one that we will certainly have to adapt to as assisted dying becomes more socially accepted. There will likely be more stories where, arguably, it goes too far, but I don't think there will be an epidemic of people offing themselves for relatively minor things.
> only meant having to bear the death of your child before you
Of course this is sad, but given the context of the conversation, the other choice being watching a child lose their mind or suffer in a world that is extraordinarily hostile to disabled people, I don't think saving the parents one type of pain (while subjecting them to another) is a really great idea either.
Also, isn't it better to have a way for people to kill themselves "cleanly", rather than kill themselves at home (or worse, in public)? Presumably finding one's child like that would be far worse?
(Of course, none of this is to say that we shouldn't e.g., make the world more accessible to disabled people, or help people learn to live with their disabilities, or try to cure Alzheimer's and the like - but as said, we can do all of these things at once. In the meantime, before we cure Alzheimer's and make everyone perfectly mentally healthy, we should also deal with the harsh realities that not having done those things entails.)
IMHO a state shouldn't give individuals the right to off themselves.
Nature and physics already do, providing laws and a framework around it perverses it to push that people that feels out of society to bad decisions some times
Maybe its better to have them be able to do it -cleanly- and legally, but that also means more of them do?
I don't see mental health, or disabilities, as granting ending your own life, my worry is this discourse around euthansia is actively against that view and detremines the experience of humans that are considered not optimal to society as they where a throw away toy
This is a really terrible way of putting it (another way of putting it might be "the right to end their suffering"), not to mention that a state needs a good reason to deny its citizens of rights, not the other way around. I don't see any good reason why we should deny people the right to end their suffering when they choose.
> Maybe its better to have them be able to do it -cleanly- and legally, but that also means more of them do?
I don't think assisted dying being accessible is going to cause more people to become suicidal, no.
> I don't see mental health, or disabilities, as granting ending your own life
The thing is, you don't get to decide that for me either, on a legal basis. You're welcome to feel this way yourself, of course, and encourage your friends and family not do so, but you don't have the right to decide that for others.
> my worry is this discourse around euthansia is actively against that view and detremines the experience of humans that are considered not optimal to society as they where a throw away toy
The thing is... we already do. Disabled, elderly, neurodivergent... There are large groups of people that society has been failing for a long time. Giving some of those groups (like the elderly) the option to not have to endure that seems to me a good thing.
But you're right it is not my right to decide for others either, and i abide to the laws and will respect others choosing to enact and follow this one, I just don't love the fact I guess
I definitely do need to spend more time out of the house with friends and such though
Most of my current stress is due to AI fears, layoffs looming, uncertain about the future job market for my skills, and such. Definitely too little sleep
I think I'm too young for Alzheimer's to be a serious concern but it does run in the family so it might be worth asking my doctor about it. I hadn't thought of that
I really do think that it's mostly a combination of my company having like 6 rounds of layoffs in the last couple of years, plus them turning up the pressure to use AI as a daily driver now.
I've been trying but I just cannot get the productivity out of it that other people are claiming. Makes me feel obsolete
Edit: I also can't really wrap my head around my coworkers who are gleefully embracing AI tools after watching the company cut literally half of our development team over the past couple of years.
It makes me feel like I'm watching chickens sharpen the farmer's axe
But it does not help me get to sleep in the first place unfortunately. Too much anxiety
I appreciate the suggestion though and if anyone else struggles to sleep, wakes up randomly out of breath, I do strongly recommend a cpap. It is great for me when I actually can sleep
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.
But it definitely is not cut and dry and I can see why some people are extremely resistant to the idea
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.
Even just getting to this point is usually a brutal period of pain. Then you have to die like that? It's frankly barbaric.