> 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."
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.
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
> 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.
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
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.
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.
There's a really big gap between 'living so long' and 'living with a lovecraftian deteriorating and debilitating disease'
> 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.
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.
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...
why not try to cure alzheimer or other mental diseases that show up on the elderly instead?
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.
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.
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.
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.
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
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.
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.
There is a world of difference between removing an inhibitor and adding an enhancement.
> 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"
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?
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
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.
because assisted suicide is a bit more damn easy than “curing alzheimer”
why not cure cancer while you’re at it
well I didn't ask which one was easier but more worthy to pursue
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.
I've had cognitive decline over the past 6 years. I turn 41 this year. It's strongly (maybe solely) due to stress, anxiety, depression, migraines, and insomnia. This entire clusterfuck started 6 years ago because, while I had the skills to excel in school and career, I was sorely lacking in the skills to be a father, husband, and homeowner. When I got married and we began having children, my decline began. But it was slow enough and normal enough at first (new parents often don't get enough sleep, they often have extra stress and anxiety, etc) that I did nothing to combat it. It wasn't until 2021 with all the added awfulness of 18 months of a global pandemic that it become obvious things were unsustainable. I was barely able to function at work, I was being put on a PIP, and I was almost completely absent from my family. When I was with my family I was irritable, angry, constantly complaining.
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.
Hey. I also fell through the cracks during the pandemic, laid off at the height of the hiring market, but unable and unwilling to go back, developed tinnitus (gone, phew!), had cognitive issues too that really took a lot of time to improve, and I'm only in my 30s.
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.
Hey I think you might be me, this is basically me in most respects. I have nothing helpful to say except to say yeah, this is a real thing that I think many people are silently suffering through right now, 5-ish years post-pandemic.
I used to get this pretty regularly, I thought I just keep burning out. I have an unusually high IQ and noticed that my symptoms were very similar to the string of condensed matter physicists that committed suicide. Their descriptions of their health issues before they killed themselves mirrored my own and I too used the Flowers from Algernon to describe my difficulties to others. I shared other weird stuff like extreme sleep difficulty and extreme noise intolerance. I found out only relatively recently it was due to ME/CFS which was from undiagnosed hEDS, a condition nowhere near as rare as it’s thought to be. I had been to see a huge amount of doctors and none of them diagnosed me with this despite being a walking bag of symptoms and having extreme hyper-mobility. Anyway, I think tech, like physics, has a fairly strong IQ selection criteria bias so I’ve noticed a concentration of the same health issues here on HN.
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).
Interesting - your story of ME/CFS mirrors mine. Mine was triggered by a really mild cold a couple of years back, likely COVID. Thankfully a lot more research is going on into this, and im mostly back to full health now but the brain fog made me doubt myself at work a lot more than usual.
Beware with Ozempic, it can cause eye issues.
I am very sensitive to Ozempic and take a low dose of 0.5mg/week after 2 years. I started very carefully on 0.05mg and had the usual adverse reactions people experience at much higher doses. I assume my sensitivity increased with the prolonged absence of GLP-1 for a good portion of my life - as in the Ozempic is directly treating an absence. I'm not trying to lose weight with it so it's just a maintenance dose to help with the auto-immune stuff.
> 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?
Very much so, night and day. I’ve been pretty much issue free for 2 years, except for PEM which means I have to avoid cardio. I don’t know how to fix that. Instead of cardio I eat healthy and lift weights. I was one of those gifted kids which was a hell of an advantage but things slipped away from me as I got older, now I’m back and as good as ever.
> I’ve always identified with my thinking—I have value because I’m smart. Turns out, as with all attachment, this is a mistake.
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.
I was in a car crash and spent a month in the hospital where they gave me heavy-duty pain killers. I could tell I was having cognitive issues because I couldn't remember words that I knew I used before, but I wasn't curious about it.
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.
Heavy duty pain killers tend to do that but it's temporary.
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.
It is unclear to me is whether Kent recovered his cognitive ability or not. He says he has, "thanks to the genie" (which seems to be his name for coding LLMs). Does this mean that with a genie, he is now able to produce like he was before? Or that he used a genie to help "re-train" himself?
What is “the genie” that is referred to a few times? An AI coding copilot?
Yes. LLMs
If you experience temporary cognitive decline like this definitely pay attention to it, it can indicate serious stressors in your life that need to be dealt with immediately. It can get worse steadily if you ignore it!
I am actually just starting to go on medical leave from work due to this
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
This happened to me during the pandemic. High (insupportable) stress, plus a year or two of significantly too little sleep, plus social isolation.
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.
I am somewhat the opposite. The pandemic was great for me. Being able to work remotely is wonderful. Much less stressful than commuting daily, more free time, less scrutiny during work hours and I don't live alone so staying home isn't isolating
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
I think sleep is possibly the most important part. I also did a sleep study and started using a CPAP machine: might want to look into that if it’s a possibility…
Wishing you a smooth recovery! It'll take a while but recovery is possible
Good luck friend
Thank you, very kind of you
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
I have a fairly unusual genetic disorder, and quite rare to boot in this particular variant. The gold standard cocktail contains a medication which, while effective in dealing with one facet of the pain, absolutely turns down the dimmer switch on my mind in fairly particular ways. Gait is affected the next day, along with a mild aphasia. During the peak, however, I am dumb as a box of rocks. Math and spatial business seem fine. I can still program, however. Just do not talk to me, as communication is ... troublesome.
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.