Conversations soon became impossible. Lee started chattering in repetitive, unceasing loops. He would tell Kristin: “We met at Cloudflare. We got engaged in Rome. We got married in Maui, Hawaii.” He repeated it hundreds of times a day. Then the loops got shorter, more cryptic. He spoke fewer sentences, instead muttering sequences of numbers or letters.
At the same time, given the flashes of lucidity pointed out in this article, you have to wonder if others talking about his condition so much might make him feel like a walking corpse when those hit.
It was incredibly sad to watch. The last time I saw him while he was still speaking — he is still alive but doesn’t speak or seem to recognize me anymore — he would repeat the same questions from the same conversation in the same order on a 30-minute loop. Over and over.
I’ve really struggled to wrap my mind around his condition. I don’t think it’s frustrating for him. He seems to have lost the emotion to be frustrated.
I think we all have a sense of Alzheimer’s because we’ve all forgotten something. This isn’t that. Lee’s memory, if anything, seemed to improve and he’d bring up little details from when we first worked together I’d long since forgotten. What seemed to go away was his ability to process those memories into something more.
It’s hard to imagine losing the ability to imagine. And, as his friend and colleague, it was incredibly frustrating when we just thought he was checked out. And then devastating when we learned all this time he’d actually had a disease.
I do wonder if some of his genius came from his ability to shut down some of the other noise in his life. And if the disease, for some time before it became debilitating, was almost a superpower. I’ve never met an engineer like him.
Yes. Very. It was important to me and Michelle that it be a tribute to Lee’s genius and contribution to Cloudflare. We spent a long time looking for the right reporter and publication. Wired seemed appropriate given Lee’s love of technology. And Sandra was a total class act. We opened up fully to her, spending nearly a year letting her get to know us. Lee’s family was incredibly giving of their time. It takes a really talented and empathetic writer to have people feel safe and to open up to such a personal story like they did.
I got the advance copy of the article last night and it’s been an emotional 12 hours reliving a lot of the last 18 years I’ve known Lee. But I’m happy we helped create something Lee’s two sons will be able to read and see a little bit of what an incredible person their dad was.
Thanks for sharing that. It sounds like first and foremost, everyone wanted to do right by their friend. That alone is touching, and I'm glad that the final article was the tribute you all hoped for. It was heartbreaking and beautiful, and was an honor to be let into the lives of everyone involved.
My prayer is that while this time is emotional, the process and article also provide a degree of healing as well. Again, thanks for sharing.
Thank you for this post. It reminded me of the one line in “General Magic” where Marc Porat tells the documentary producer that the reason he agreed to make himself very available and open for the film was so that his (presumably somewhat estranged) children can get to know him and the story and the work they did, better.
Terribly sorry for you and your friends and colleagues’ loss. Thank you and everyone else for doing this for his children.
Had same reaction when I saw Marc in the General Magic doc. We’d already started working with Sandra when I saw it. But think it’s part of why Marc’s story was so emotional for me. Both stories of opportunity, genius, and loss.
Maybe it was the direction or the editing, but there was so much romance in it for me as a kid growing up in SV during that era. I had Misty eyes for an era mostly gone by.
Thanks again for your work, both on the company and the article.
This was one of the most incredibly tragic and moving pieces I've read recently, and serves as a reminder of the fragility of consciousness and being. Thank you for sharing his story.
The thought of someone I love (in the broadest sense of the word) being affected by this is horrific. I'm really sorry for his family and friends :(
I think that you're kind of right: I know one engineer who is like that and he it's his autism which makes him brilliant. He could operate in deep-thought mode all the time - he is extremely intelligent and extremely focused. There are other people who can hit it for patches - I could do it for 3-4 weeks at a time when I was 21. At 39 I struggle to do it for an hour a month (kids change you more than anything else).
We really know so little about how our minds and bodies work and that's something we need to change. We should be able to identify and fix conditions like this.
Makes me think that some of us here are wasting our abilities on start-ups and systems when we could be working on fixing much more complex systems.
Life is short and slips away quickly. Use your abilities to further the things that mean the most to you, not on a possibly misguided sense of what you "should" be doing.
Reminded me of this quote often misattributed to Plato[0]:
"Be kind; everyone you meet is fighting a hard battle."
and Patrick Farley's version from his series "The Spiders"[1]:
"Show kindness to every person you meet. No matter how ill-tempered a man may seem, you have no idea what private agony he may secretly be struggling with."
Lee bought a few material things, but he was mostly able to live out of his backpack for years at a time, at least before he got married. He didn't have many material desires (no fancy car, clothes, or big gaming computer). He periodically lived on other people's couches (including mine) between starting university and getting married.
I remember he drove through at least a few red lights because he was in the zone deep in thought processing some coding concepts / business plans in his mind while driving. Once I noticed this, I didn't let him drive me; instead he started to code on his laptop in my passenger seat.
When we were waiting in line to rent a UHaul-type truck, he was pacing the retail waiting area thinking through some coding for a future Unspam feature. I remember it because the guy standing behind me saw him as a stranger threat and started to get anxious that Lee was pacing in a hoodie nearby. I mention it because he never concentrated much on the small daily tasks like waiting in line and mostly overloaded those tasks to optimize his long term goals (eg. startup success).
He didn't write big architecture docs (possibly the part of his work that didn't scale much), but his mental capacity to juggle lots of small facts and tasks was pretty incredible. It worked great with a small team with very low turnover. I miss those days when I just checked in with him 2-3 times a day rather than having to spend a lot of mental effort to figure out how to serialize lots of trivial stories/subtasks into Jira.
That’s what I wondered too. If it was all part of a particular kind of brain. He reminded me too much of my ex-husband, also a high level programmer, and his sleep habits and growing apathy and irritability while we were together (though he might point to me as the cause). Not to say my software engineer ex has the same condition, but maybe he has a touch of it. So many of us have just a touch of something that is clinical in someone else.
His old college roommate met up with Lee when the "looping thoughts" symptoms first started to present and the roommate (who had been overseas for 10 years before that) commented that he almost called 9/11 because he thought Lee was having some sort of a stroke. Lee's short term memory seemed to wipe and he restarted the same conversation 3 times in an hour lunch (this symptom is pretty common in my experience with other dementia sufferers).
I met back with them a year later and he was very dependent upon his cell phone to look up people on Facebook, places on Google Maps, movies on IMDB, etc. (basically all nouns) in real time during the conversation to fill in the gaps in his memories. I lived with him for maybe 5-6 years and he had to look up my Facebook profile and pictures to try to pick up on any nostalgia that might catalyze a memory.
I suspect there is an underlying current of frustration, but probably not a high level cognitive realization (at least not a sudden one) that his mind is degrading.
It's a tragic story. In some way, he'll live on in his contributions to a better and safer internet, for whatever that's worth. Thank you for your contributions, Lee, and I hope you have the best life you can.
And people don't understand why I fell into a two week existential crisis after I saw 'The Notebook'
> many of the neurologists who study it believe it is underdiagnosed
This is a tragedy. Of course it's underdiagnosed. Everyone around you would just think you're an asshole. In the article, it sounds like so many people fought right and were patient and loving. How many cases do we never hear about, get fought abusively, and push the last shattered remnants of a person into drugs, suicide, etc.
Perhaps this is too philosophical, but for anyone who has dealt with someone with a long decline into dementia, it's very difficult for me to understand a belief in God after going through that (I certainly understand some people have the exact opposite reaction, so I'm in no way saying this belief is correct).
It's just difficult for me to envision a crueler God if that is indeed the case. A person who has died long before their body gives way, only to be a constant burden, with virtually no joy, and a constant reminder that your loved one is dead, yet still here.
In the worst cases I say unreservedly that it is a huge relief when the person's body finally joins their mind in death.
I'm sorry you had to watch that happen to someone on the long decline. Occuring alongside a number of other conditions, my mother's dementia only ran a brief course before she passed away. That brief window was terrifying and heartbreaking. I understand some of the relief you mentioned. It felt like a war had ended.
This is known as the "problem of evil" and has intrigued philosophers and theologians for centuries. There are quite a few responses to the problem[0] though it's up to you to decide if they're convincing or not.
I don't think anyone has the perspective to make a definitive judgement like that. The situation could be like a young child judging his parents to be cruel and uncaring for making him go to school, which he dislikes. There could be unknowns that would change the judgement if understood.
It feels a little bit condescending to compare the amount of suffering caused by things like dementia to an unruly kid who doesn't want to go to school.
> It feels a little bit condescending to compare the amount of suffering caused by things like dementia to an unruly kid who doesn't want to go to school.
It wasn't a comparison, but an attempt to illustrate how things may look different based on your knowledge and understanding. Obviously such an illustration is going to be trivial compared to the real thing, since you have to substitute something simple that everyone knows for something no one does.
The universe exists to give us the opportunity to be selfless caregivers for our fellow human beings or be callous or even predatory towards those we deem "other" or "lesser". This why we each are born with a sense of morality, however molded from culture to culture and manifest from person to person, except in the rare cases of people, like Lee, that have physical pathologies that hinder it.
The non-pathological of us each have the free will to choose to self-evolve ourselves during our lives towards greater compassion for all those around ourselves, or to selfishly gather as much material pleasure as we can for ourselves regardless of the cost to others, be it monetary, emotional, or physical.
We are all actively evolving ourselves every day of our lives, for better or worse, even if all it amounts to is repetitively strengthening one's already accepted habits and attitudes. The exception being when disease or tragedy takes away our ability to rationally choose, as happens with people such as Lee. That is where compassion from our fellow human beings is part of the potential we must each welcome, for such is the moral requirement of being a human being.
We have been given what is both a great gift and a great responsibility with our free will and the mind required to learn and wield it justly and for the benefit of the whole and not just some preferred sub-group.
God is not a white man (full-disclosure: white guy here); It didn't give us free will only to then take it back from us because that means we can become, for example, callous, self-serving, corrupt, power-seeking, hypocritical fake-Christian deceivers of men.
No. The polarity of our morality extends to whichever direction the person can imagine. That is why we are both treasured above all creation and capable of the most brutal of atrocities.
We are free to be good or evil and that means we are also free to not give a fuck.
I have no wisdom to share, and certainly no opinion on higher power that I would consider profound. What you describe is an unbelievably trying experience.
If you are hoping to make some sense of it all, I found Man's Search for Meaning by Viktor E. Frankl really altered how I see suffering and my place in the world. It's a very concrete book, and outlines a way to live with meaning without needing God (though totally compatible with faith).
Stay strong friend, I believe in a tragic optimism[0] like that outlined in Frankl's 1984 postscript.
I truly feel for your loss. Two of my grandparents have gone or are going through dementia.
I don't think that this has any bearing on the existence of God, however. Humans are the ones who have created such an overwhelming and toxic physical environment and disconnected social one. For God to truly endow us with free will, He had to allow us to fail, even this miserably, and to cause our contemporaries and descendants to suffer for our failures. We have the hope of Christ's return and eternal life but only after everyone has been given the opportunity to turn to God for hope on earth.
I don't mean to prosthletize — this is how I understand the world and helps keep me hopeful in times of grief, and I hope it helps you too.
> Humans are the ones who have created such an overwhelming and toxic physical environment and disconnected social one
This argument isn't really theologically sound. If God exists, he's the one that created a biological system that allows for something as horrific as dementia. That literally has nothing to do with anything humans have done. It's pointless suffering.
> and to cause our contemporaries and descendants to suffer for our failures
If freewill is so sacred why does the OT and NT have so many examples of freewill being removed? Like in 2 Kings 1:10 and other places, if God is fine with freewill being ignored, and God never changes, then he can act, and if he can act would he not be considered unjust by Jesus words in Luke 18:1-8? Not a gotcha or academic question, just something on my mind recently.
I'm not positive that the 2 Kings example is exactly free will being removed, because Elijah asks God for what happens, and God does respond to prayer (praying with faith is another issue).
But I do see what you're asking — how God seems to step in more often in the OT. Thinking of all of human history from ~4000BC until now where Mankind "grows up" over time, the concept of God as Father works — parents put a lot of restrictions on their kids when they're young to keep them safe, and remove those restrictions over time. Even if the child does something unsafe at a certain point a parent just has to say "now that you know the consequences, you have to live with them."
I mean the people who got torched had their freewill removed without warning, death by direct action of God. The issue is not with boundary setting, the issue is with Jesus seemingly calling himself (God) unjust, since freewill doesn't seem like an inviolable issue, if God doesn't have a hard restriction on effecting freewill (which seems to be the case) then he is seemingly the same as the unjust judge? I understand the argument from Job that people aren't to question God because we are simple clay to him, or the argument that people are evil and deserve nothing less than eternal suffering, but since Jesus set the expectation and made the connection directly in Luke it seems like a non-upheld internal measure/standard of God's own?
Not to be cruel, but the preexisting, running total of human suffering and tragedy in this world points to the fact that transcendent reality, the realm of God or a God, must have an alternative interpretation for human events, one which humans cannot fathom.
So for example, the tragedies which occur in your nightmares, after you wake, are given a different interpretation- the interpretation of "non-reality", i.e. it didn't really happen in some basic way that puts them into the category of "life non-tragedy".
From God's (or "a god's", for our dedicated atheists) POV, there is some enclosing context to the events of our lives that makes this mess we call reality "make sense". We don't have that perspective, so we think we suffer, pointlessly.
Along the chain from amoeba to goldfish to humans the understanding of events in our shared environment by each species changes. We think of that change as progressively
achieving a "deeper understanding" of reality. The zinger in this recitation of prosaic facts is: your consciouness is not the last one in the chain.
This is what Christians experience (and think of) as "faith". Faith in the wisdom or sense-making of a transcendent God and His plans.
> the preexisting, running total of human suffering and tragedy in this world points to the fact that transcendent reality, the realm of God or a God, must have an alternative interpretation for human events
You're begging the question. It doesn't point to that at all.
Furthermore, I'd feel terrible accepting that "fact" if I were faithful. It would reduce my faith to that in a demiurge who can't (ergo impotent) or won't (ergo ignorant or malicious) build/maintain a reality that (1) makes sense in the enclosing context and (2) doesn't require the depth of horror and pain for its components/participants that this one does.
Exactly, unless one sees the suffering of others as suffering of NPCs or punishment for a former life, I cannot understand how one can believe in a benevolent omnipotent god. The cruelty that some have to endure is simply not explainable with a such a god. It cannot be benevolent AND omnipotent by definition. It becomes far far far more likely that there is simply no such a god. It's not like this dilemma is new so there should be a better explanation by now.
It's a deep problem with a long history of attempts at answering it, some more satisfying than others. One answer that appeals to many faithful is the idea that all this suffering will be "redeemed", or made to be worth it at the end. Augustine, for example, would take the "NPC" prong of your dilemma by saying that our earthly existence "in time" is not a full experience of reality at all. Indeed, you can find this view, that our conscious experience of reality-in-time is somehow illusory, in many non-Christian sources anywhere from Buddhism to Daniel Dennet. In Augustine's view it's only outside of time, with God, that human beings can fully exist - thus earthly suffering is nothing compared to the joy of being in Heaven. Obviously this is not a foolproof argument, but HN deserves to know the best answers Christian thinkers have come up with.
It always seems to me that faithful people just don't confront themselves with the suffering that is happening and has happened. When you know about such events it seems to me to be either a lame escape or maliciously ignorant to claim there might be a god who sees the big plan and is still omnipotent. When there is not even a glimpse of a reason for certain acts against children I refuse to accept any far fetched esoteric excuse.
All religions have a mystic branch which describes an awareness , usually transient, of a higher order to reality in which the suffering of people is "redeemed" or put into perspective or somehow negated.
One interesting thing is that the language and imagery used by the mystics of these different and separated religious traditions are often indistinguishable from each other- it's not clear if it was St. John of the Cross or Augustine or Zen Masters Ikkyu or Dogen who is saying them.
On thing they refer to in this transcendent reality is apprehension of "the coincidence of opposites". So for example, the obvious fact that a thing cannot both be and not be at the same time is itself contradicted or "resolved". In logic we say "not both A and not A" (or else a contradiction is permitted and from there literally anything can be proven).
If I were a goldfish, no matter how right the math you read to me was, I would not understand it, you or anything it referred to. Even as the atomic bomb it described exploded, I still would not understand the nature of reality which now quite literally impinged itself on my flesh.
What would it feel like to be confronted with that kind of knowledge? Would we recognize some formulation of it but reject it, as in: both A and not A?
Would it be something impossible, existing outside of what appears to us to be exhausted possibilities?
Not A
Not not A
Not both A and not A
Not not both A and not A.
etc?
We can feel the limits of our own thinking when we reach something which is logically impossible. We just can't get our thinking around these things; contraditions seem like an absolute dead end, leading everywhere and nowhere.
Are there things in our lives which we literally experience, like an atomic bomb disntegrating a goldfish, which even as they touch us and we feel them, we simply fail to comprehend the "real" meaning of them? The breeze? A look? A birth? Suffering?
Spirtual insight may be a thing like mathematicqal talent- some people have a talent for it and some people don't. Such a talent may be completely disconnected from normal intelligence. To people who don't have it, it seems like garbage, i.e. self-contradictory, self-pacifying wishful thinking.
How is the demiurge taking utility from humans if humans ending up in heaven is the optimal outcome for both humans and diety?
> Argument?
It’s an argument that a diety can both be omnipotent and benevolent if humans don’t know true pain or pleasure in their earthly lives. After all, both earthly pleasure and pain are temporary, so if you can conceive of eternal happiness it might render earthly suffering negligible in comparison.
I always hear this back from people, but it's a failure in understanding what's being said. You can't conceive of any future "knowledge" or state of being or most broadly, "configuration of reality" which could retroactively justify or "make right" proven and real human suffering already suffered. That is just not possible to you.
That is what you're saying. It's isomorphic to your argument; it is your argument's essence.
Expressed that way, the issue becomes apparent. We cannot conceive of something; it is inconceivable. But that inconceivability is exactly what the original argument is asserting - it's a thing beyond human conceptualization. Exactly.
All parties to the argument find agreement on this point.
Aren't there more than two explanations for "won't" beyond (1) ignorance or (2) malice? Perhaps we are the ones who are ignorant for why things are this way.
This is a question as old as religion, of course, with plenty of answers of all sorts: because He has a plan we cannot see, because He is punishing you/us/him, because He is testing you/us, because The Evil is really responsible, etc etc...
In the end, is it really that cruel, when compared to creating a universe that is effectively trying to kill us all every single day...? From animals and plants in the jungle, to solar flares and asteroids, everything in nature is to us what a garrison of armed Stormtroopers is to Han Solo: they might miss most of the time, but it’s not going to be for lack of cruelty or intent.
Shouldn’t have an expectation of god making everything well. Otherwise there’s be no war. If that is your requirement to believe in god, you will never
Every person is a door to your happiness, and you have the choice to serve their happiness or to treat them callously or even cruelly.
There is no religion without the person actively trying to be a better person to every single person around them. It doesn't matter what spiritual practices they do or don't do, we are each measured by our hearts with respect to how we treat every person we encounter.
Religion's only goal is to get us to work together cooperatively across all divisions of humanity (from form of religion, to gender identification or sexual preference, to ethnicity or culture) to create caring, accepting societies. Right now, our world's state is the result of our societies being based on competition. That is why there are so many destitute homeless people. The system itself doesn't give a shit about them because the system itself only cares about money.
And this is all the result of human making choices based upon their selfish desires, humans in their packs taking as much as they can for themselves while callously ignoring out-group members. That is not human, and is literally inhumane. For that same society to produce Jeff Bezos demonstrates its brokenness that is also its design.
The problem is that the vast majority of so-called religious folks are only doing so to be a member of the alpha group, instead of being interested in how they can be a better member of a better, all-inclusive society. We have mammalian bodies and those structures inform our potentials. To be human is to rise above that animal heredity and embrace the virtues of humanity: caring, active, effortful compassion being essential.
This is why a prominent Rabbi spoke at Muhammed Ali's funeral. They were both Men of God who spread love and unity amongst and between their different cultures. Anywhere you find universal love and respect for all others, you find God's Religion, whichever form it takes in its society.
And legion are those that selfishly deceive in the name of religion or even try to create their own religions. The child rapist Catholic Priest does not denigrate the Message of Love present in Jesus' form of God's Religion; he only proves his perfidy and that of the organization that hides his sins and felonies from his prey's society.
Well, correct me if I'm wrong, but words have meaning and, as a father-to-son Scotsman, I'm pretty fucking sure that a Scotsman has to have some branch of their ancestry come from Scotland.
Also, a priest can't honestly say they love you and serve Jesus if they're raping your children in the back room.
There is truth and there are lies and falsehoods. Nuance is required to discern between them. Most people are just too intellectually lazy to even try. That ignorance leads to many of the systemic problems of our world, not the least of which are religious groups like ISIS/ISIL and the Catholic Church deceiving people with their lies, hypocrisies and oppressions.
Dunning & Kruger, dude. I know where you land on the chart, and I know that you don't know where you land yet think you do.
The weirdest thing was when in one of Oliver Sacks' book (maybe The Man Who Mistook His Wife for a Hat), after countless stories of people losing their personality, their mind, almost their humanity in some cases, he talked about his continued belief of the existence of an immortal soul, when I precisely myself find his stories vivid evidences that such a thing as a "soul" is a complete absurdity and an illusion.
It's a very strange thing. For instance, the Bible is full of horrifying events, and the life of Jesus, a seemingly innocent, well intentioned man who is crucified in an excruciating death for no good reason, also seems to be in line with denying the existence of a good God. In fact, Jesus seems to agree with this in his last moments on the cross, saying "my God my God why have you forsaken me?" It is very mysterious why one of the world's largest religions has its foundation in such God denying aspects of reality.
Are there any remotely promising paths to treating or preventing neurodegenerative diseases like these in the future? Or at least to slow down the progression? Are there any experimental drugs? Will we likely just need to wait until targeted in vivo genetic engineering is understood and mastered?
I know those are broad questions, but suffering from something like dementia, Alzheimer's, or Parkinson's, or having a loved one suffer from it, seems like one of the cruelest fates imaginable. The helplessness of the doctor saying there's basically nothing you can do other than to try to eat healthy and exercise... If I was given such a diagnosis while still lucid, I think I would want to try every experimental treatment available, if any exist. I'd accept almost any risk over that horrifying, inevitable outcome.
That's basically what the doctor said, though. I personally doubt those slow it down very much. I also think the science is still so poorly understood that certain supplements or foods could potentially even worsen things. (Just to throw out a totally made up scenario, maybe some compound found in some plant, and its metabolites, cause a small increase in monoamine release. This may be perceived as a mild stimulating effect in healthy people, but could hypothetically potentially speed up some feedback loop which leads to faster neuron death in people with certain neurodegenerative diseases.)
Exercise and healthy eating is probably still a good idea, but basically it just seems like hoping for the best without real knowledge of what may or may not be helping or hurting.
I have a chronic neurological condition that may eventually affect my ability to walk (though it is stable and the current prognosis is good and the drugs work for the pain) but when I was going through the process of finding out what it was and how bad it was the one question at the front of my mind was "will this affect me mentally?", I could live with the thought I may one day need a wheelchair but I don't think I could live knowing I was going to lose my essential sense of self.
This is a beautifully written article but it hit me pretty hard, I can understand the terror having faced it for a few months, I think if I got a diagnosis of dementia I'd head to Switzerland at the point where I still could.
Losing your mental faculties is a profound fear especially for smart people. After falling down stairs in the early stages of his ALS, Stephen Hawking went to his local Mensa center to take an IQ test to make sure he was still "all there" and smart enough to do physics.
Neurodegenerative diseases scare me out of my wits. All I can hope is whatever takes me is swift, or at the very least leaves my mind intact. Regardless of who you were and how rich and famous you might be, all what matters is what you'll be.
I come from a family of extremely gifted visual thinkers (PhDs from MIT/Stanford/etc) and in the last year one of us had a heart issue that coincided with a month long bout of psychosis, where dream-like real visualizations were overlaid onto the real world.
I’m convinced that the genetic effects that provide us with extreme visualization and problem solving skills are related to this particular failure mode, where schizophrenia is also common in the family tree.
Yes, evolution often seems to result in these sorts of trade-offs. It seems pretty rare to get a genetic "free ride", so to speak. It's like different ways of balancing the same equation using the same resources.
The ability to make strong abstract connections transforming into misassociations?
I think about this one a lot, how easy it is for pattern recognition to misfire and synthesize conclusions and connections that are partially rational and correct, but with one bad piece of input data skewing them into fantasy. Sometimes the conclusion may be right, but its magnitude, impact, or applicability are grossly overestimated. Part of what makes such gifted people is the ability to imagine, hypothesize, and use hypotheticals. This giftedness often coincides with the ability to make many parallel what if thoughts and identify the most probable. At some point, hypotheticals morph into faith and what was once a thought experiment becomes belief. What ifs break down into belief "this is actually happening, this is reality." It becomes its own compounding feedback loop, as faulty conclusions layer on top of each other over time.
My father is an entrepreneur, with multiple successful companies under his belt. He's got a knack for seeing opportunities others don't, synthesizing those connections. Anybody who's had a conversation with him can tell you that.
His younger brother, my uncle, was diagnosed with schizophrenia at age 20 after becoming severely erratic while away from home on an LDS mission. The diagnosis devastated their family, and has been followed by decades of difficult treatment and heartbreak.
What is it about my uncle that pushed him over the edge? Environment? Genetics? Pure chance? I wish I could know. My dad says that there's not much left of him except for a few moments here and there.
My dad had a big family, and he's said that his younger brother always showed the most promise, growing up. Smart, charming, super friendly. 30 years on he continues to greet everybody with a smile and hug, even if he doesn't know them!
It's sobering to see it in my own family, and it keeps thoughts like the one you articulated so well in the back of my mind constantly.
One idea mentioned in the article that I've seen elsewhere is this:
"The gist, then, is that someone is “himself” because countless mental artifacts stay firm from one day to the next, anchoring that person's character over time."
I have read reports that latent schizophrenia is often revealed when people travel abroad. Maybe if your environment and surroundings change drastically, your mind loses its sense of "self" that was based around anchors to the rest of the environment.
This journal article touches on this:
"Long distance travel has long been known to aggravate pre-existing psychosis.... Travel can be a destabilizing life event7 with many potential hazards to mental health, from the effects of drugs used for prophylaxis against infection, to homesickness, to disrupted circadian rhythms, to culture shock."
http://www.ijtmgh.com/article_33029_738f7bb0f6124261891cf610...
I don't know if abstract problem solving is related to schizophrenia but genes that increase schizophrenia risk are generally correlated with lower iqs.
Saying this as someone whose mother scored in the top 1% on the SAT and was schizophrenic.
Indeed, I believe IQ is found to be protective for development of schizophrenia (hence lower IQ correlation) -- if you have the genetic disposition but high IQ chances of developing the disease are lower I believe.
Schizophrenia is different that it is at least partially behavioral. The brain is more like an adaptive neural network, so it's sometimes hard (or impossible) to disentangle hardware from "behavioral configuration". In the case of schizophrenia I think (not a doctor!) there is a (perhaps structural) disposition toward modes of thinking, psychosis, delusion etc. -- thought and behavioral patterns that develop if there is inadequate self-assessment in place (which is how I would explain identical twins differentially developing the condition), and experiences of stress and trauma that can disrupt benign thought.
It is a terrible condition... I have close family members with psychosis too (that's somewhere in the spectrum of bipolar to schizophrenia). For me it appears quite clear why intelligence has a protective effect (and one of the many reasons I value, and cherish, intellectual activities of all kinds so much).
Counter to opinions elsewhere (where you shouldn't live in the "shadow of the disease" through genetic screening, family history, etc.), I personally do think it's important to be mindful of it. That way at least symptoms may be recognized early and treatment can be more effective (since it is at least partially treatable and has a large behavioral aspect). Here's hoping we never develop it.
10 good years is a long time. As a founder I would guess he truly believed in the mission, at least before FTD took hold, and I think that kind of pursuit would be more fulfilling than a 10 year vacation.
That's the answer to "Would you spend your last 10 years securing a guaranteed multi-million dollar payout?" not "Would you work your tail off for a gamble?"
In Lee's case, at least when he started his career; the answer to that is definitely "yes". He didn't "toil", and he was working on something he believed in and was passionate about.
While Lee's personality changed a lot over time, he was always the guy who got more out of hanging out in a garage building something than someone touring France/Italy/etc.
I don’t think Lee ever toiled. He was a “maker” in the best sense of the word. And, to this day, when he expresses himself in the limited ways he still does, he searches Google or YouTube for “Cloudflare.”
> The neurologists delivered their verdict: He appeared to have a textbook case of frontotemporal dementia—known by the shorthand FTD
Oh man, was that a kick in the guts when I got to that bit. My Dad was diagnosed with that in the past year, (after obviously struggling for a while), and declined rapidly. He had a different variant, and indeed the one thing that DIDN'T change was his personality. In fact, that's what kind of fooled me for a while. He would still trot out his usual bad jokes and regular phrases, but after a while you realize these are almost like reflexes, and often wouldn't really make sense in context.
It was interesting to see for Lee how this seemed amplified after heart surgery. My Dad had really bad "post-operative delirium" for about a month after major heart surgery, and while he recovered somewhat, that was definitely the start of his major decline.
Sadly, after moving into a care facility in mid-March, within a couple weeks he was in hospital after contracting Covid-19. He passed away on the 4th of this month from it. The only good to come out of all this was that I'd visited him many times over the past couple years and said "goodbye" many times thinking it might be the last time, even if just mentally and not physically, I'd get to see "my Dad", as I knew him.
Apparently it is often a genetic disorder that can be hereditary, and you can get tested for the genetic markers. As a coder/manager myself who depends on my mind for work, and enjoys being mentally challenged and active, (and I also have young kids), something like this scares the crap out of me. I'm not sure I want to know if I might have it. For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a "pre-existing condition" I'd have to disclose?
>> It was interesting to see for Lee how this seemed amplified after heart surgery. My Dad had really bad "post-operative delirium" for about a month after major heart surgery, and while he recovered somewhat, that was definitely the start of his major decline.
That is a strange coincidence. Could changes in bloodflow have an impact on brain cells?
There has been, for several years now, concern that general anesthesia may have a negative impact on the brain and, in particular, Alzheimer's Disease but also general cognitive damage.
Here's a 2018 piece discussing research from the Mayo Clinic focused on apparent anesthetic damage in patients older than 70.
> Delirium is associated with negative hospital outcomes including a tenfold increased risk of death, a fivefold increased risk of nosocomial complications (Inouye 2006), poor 1-year functional recovery, and postoperative cognitive decline (Saczynski et al. 2012). The long-term cognitive decline seen in some patients after the development of delirium is similar to that of Alzheimer’s patients (Pandharipande et al. 2013). With reports of up to 50 % of patients over 60 years old developing postoperative delirium following cardiac surgery (Rudolph et al. 2009), this patient population poses a major burden for healthcare.
When you go on bypass(needed if the heart is stopped to replace a valve) air emboli (very small air bubbles) go into the brain and can get lodged in capillaries cutting of blood flow. Personality changes are documented to occur after bypass and correlate with areas of the frontal cortex that die. Typically though this kind of injury is not progressive.
I think cardiac surgery is the worst offender because they often have to bypass the heart while performing the surgery, and this can result in blood supply issues while diverting/restoring flow through the heart.
I have been sedated a few times for minor procedures, propofol, I think, with no issues, and I’ve had a general once, for a laparoscopic cholecystectomy - about as trivial as abdominal surgery comes, only a few hours under.
It had side effects.
For the better part of a year afterwards, I kept finding myself unconsciously substituting completely incorrect words into written correspondence, I was irritable almost constantly, my short term memory was shot, and I had hallucinations and attacks of aphasia - I’d be walking down the street, or in the shower, or in a damn meeting, and I’d not only forget where I was but I’d lose object permanence and recognition - couldn’t tell taps from cats, cars from shoes.
It got better, over time, but there was very definitely a long mental hangover from it. I do have medical quirks, like I can’t tolerate opioids (they worsen pain and make me vomit), and I’m a carrier of a whole bunch of degenerative diseases (thanks, inbred aristo dad), and when I had surgery I was weakened from years of still mysterious illness - they thought my GB was the root cause, but no - stress - leaving tech fixed me.
Anyway. I can readily see how, with someone with a poised avalanche of genetic mental disorder, it can be enough to completely push them into the abyss.
I've experienced this too. I had a tumor removed from my head. It was pretty serious. I'm not sure if it's due to the anesthesia, physical stress of the operation, changes to brain blood flow or radiation that my brain was hit with.
Either way my memory has not been great since. My wife is disappointed when I forget meaningful conversions from a week ago. I struggle at times to notice trivial errors, really struggle. I can look over the same email and miss several mistakes. Other days I'm clear, I don't make many mistakes and I can spot them easily.
I still managed to get an Engineering degree and hold down regular employment as a software developer. But there are periods of time where my focus and productivity are just not there. I suspect this will hold me back in my career. But I'm thankful I can function as well as I can and have survived to this point.
I'm sorry, that sounds awful. I think it definitely could be any combination of those things. The brain is a very delicate and sensitive machine.
I don't have specific recommendations, but I think that the potential for recovery should be much higher than what people with neurodegenerative diseases suffer from, like what was described in this article.
There're a lot of risk and uncertainty trade-offs, and everyone reacts to things differently due to their genetics and what they're suffering from, but nootropic substances could potentially help here. They could possibly help as a short-term aid that improves memory and attention to detail while the nootropic is in effect, and some can actually potentially create long-term improvements.
They're very under-studied, and they definitely require a lot of careful research, gradual self-testing, and acceptance of some risk (some nootropics have almost no risk, and some have a moderate level), but it could be worth looking into.
> The brain is a very delicate and sensitive machine
Something as simple as a prion can completely destroy it and then there's Phineas Gage, someone whom all neurobio students learn about on day one of their course. Neuroplasticity can be quite amazing.
Yep. A lot of it is personal biology and a lot is also chance. You can be shot in the head and survive with not much cognitive impairment, or you could hit your head against something and be unable to speak or feed yourself for the reset of your life. We are very pliable but it's sad that we're also still so fragile, at the level of the "mind" / "soul". Hopefully there'll eventually be a day where consciousness can be hosted in a much more safe way, for both biological and total immortality.
I don't think it's exactly correct to say "a prion" can destroy it. One single prion I don't think would cause significant damage in most cases, if there could somehow be only a single one. The issue is that it's believed a prion will gradually cause nearby proteins to misfold and also become prions, and then it probably starts recurring exponentially like a pathogen infection, and your brain physically deteriorates and falls apart with no way to stop or reverse it. A very similar deterioration process appears to happen with other disorders like Alzheimer's and the form of dementia discussed in this article, though the root cause still isn't understood.
Neuroplasticity is an extraordinary thing. With proper consistent mental exercise and training, you can improve your working memory and focus back to what it used to be if not better.
Inspirational messages are good, and there's certainly a good chance that you're right in this case, but I also don't think it's a great idea to speak with such certainty.
I mean, they had a brain tumor which could've been causing damage itself, plus radiation to the brain, invasive brain surgery, altered brain blood flow during the surgery, general anesthetic... That's serious stuff affecting the most complex machine we're aware of.
The brain can be capable of amazing feats of recovery, but it's always going to vary based on someone's pre-existing genetics, environment, age, and the specific damage they might have incurred. Recovery back to baseline absolutely may be possible for them, but there's really no way to know that for sure when dealing with something so serious and without knowing many other factors. Hope is good, but sugarcoated false hope isn't.
Sorry, I didn't see this until just now. I wish HN had some kind of notification feature (cough dang save us please cough).
I don't think I'm sugarcoating, at least not in the sense of how the word is usually defined. We know neuroplasticity is real. It isn't just some placebo. Regardless of what part of the brain was affected, because of neuroplasticity, he/she can recover functionality through exercise and training. I agree with you that this won't always be the case, and at some point, brain dead is pretty much brain dead like in the case of survivors of gunshot wounds to the head for example. But given the eloquence of the poster's comment, I think the kind of situation we're looking at here is of a different class.
It could be something physical. My sense was it was something else in Lee's case: a change in his routine. I think the routine of coming into work kept him in a pattern that kept him from deteriorating quickly (or, at least, kept us from recognizing his deterioration). When he had heart surgery, he took several months off to recover. When he returned, he seemed dramatically different. I also noticed a dramatic change immediately after he took time off for his wedding/honeymoon. And, after he left Cloudflare, the article talks about how it seemed like the effects of the disease accelerated. I'm not a doctor, and there very well may be some other connection, but my sense in this case was the routine of work actually allowed him to hold the effects of the disease off and, at those times when he didn't have it, those effects accelerated.
Serious medical interventions can make a patient "age" quite a bit and this exacerbates other medical conditions they may have, I doubt there was any direct connection between the two conditions
Dementia and schizophrenia are present in my family as well and caring for those in the later stages has been really hard.
I found myself torn by the same question of whether to test for genetic predisposition. After reading The Gene by Siddhartha Mukherjee, whose author is in a similar position, I have found some comfort in deciding not to test for now. As he says in an NPR interview:
> There's no one-to-one correspondence between a genome and the chances of developing schizophrenia. And until we can create that map - and whether we can create that map ever is a question - but until I - we can create that map, I will certainly not be tested because it - that idea - I mean, that's, again, the center of the book. That confines you. It becomes predictive. You become ... a previvor (ph). A previvor is someone who's survived an illness that they haven't even had yet. You live in the shadow of an illness that you haven't had yet.
Schizophrenia seems like a tricky one given that its triggers are less well understood and trauma seems to be part of it (so maybe knowing would lead to increased anxiety/stress which could make onset more likely?).
Otherwise it seems like whether or not you test the reality is set independent of your knowledge of it. I'd like to think that I'd want to test given that, but I suppose it's hard to know how I'd act without really being in that position.
I loved his book, but I think I disagree with him on this - feels like a rationalization of an irrational thing.
My experience was similar to the author's in that I grew up around family members who were in advanced stages. The possibility of inheritance stares you in the face whenever they're around.
If there was a conclusive test, I would definitely take it for the sake of future offspring. Otherwise, it would likely give me more anxiety than useful information.
It survived both political parties in power. It might get chipped away over the next 30 years or replaced with public option etc, but bringing back the preexisting condition issue would be extremely unpopular. Also, it does not actually cost insurance companies much money as they can all just raise premiums.
So you're confident that the Supreme Court will overturn the 5th Circuit's decision to throw it out? The Supreme Court will be hearing the case this autumn.
And you must be confident that Trump will lose, since the 5-4 majority that saved Obamacare last time will not survive a few more Republican appointments.
In terms of appointments, republicans have had control of the Supreme Court for years. In terms of the actual judges and their rulings that’s anybody’s guess. They could easily remove the tax while keeping the rest of the law unchanged or do just about anything.
I don't really know what to make of "republicans have had control of the Supreme Court for years." Overturning Obamacare was their number one priority during the Obama administration. The Supreme Court chose not to. The five justices who chose not to are still seated. Some control.
Scalia and Kennedy where both republican appointments and replaced with Republican appointments. So if you’re saying they have 5-4 control now they also had 5-4 control then.
So what? The Chief Justice can write the minority opinion next time. That 5-seat majority includes some who will almost certainly retire in the next four years.
The Obamacare rule about preexisting conditions was specifically to fix the individual insurance market. The pre-Obamacare individual insurance market was really broken -- you need the "three-legged stool" (pre-existing condition coverage, universal mandate, subsidized premiums) to have a functioning individual market, and that didn't exist until Obamacare.
> Regardless I many people who had preexisting conditions pre-ACA, and it never affected coverage.
This mostly affected the individual and small-group markets, in which a pre-existing condition either disqualified you for coverage, made it prohibitively expensive, or explicitly excluded coverage for that condition (sometimes, the exclusion was only for a set period of time).
Typical failure modes were: individuals unable to get coverage on the open market; small businesses and non-profits that offered employees health insurance being forced to fire people because they got expensive illnesses and their insurance providers threatened to 10x their premiums; etc.
It made entrepreneurship and freelancing a much harder choice for many (typically older-than-30) folks, especially since you risked getting fired & losing insurance if you worked alone or for a small-ish firm.
Some states had remedies for these issues -- either through a high-risk pool for people who were rejected in the individual market (though often these policies had coverage limits that made them not ideal), or through guaranteed-issue insurance in the small group market (i.e., if you and a partners start a business, insurance companies in your area who serve small groups HAVE to a) insure you, b) not charge you more than 10% the average rate, and c) renew your insurance when it's up for renewal, usually annually).
California in particular had both these in place pre-ACA.
>For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a "pre-existing condition" I'd have to disclose?
I'm sure the people who pay premiums for health insurance would hope so. If you already know you have a condition that's going to cost a lot of money to treat, you're not looking for insurance. If you can't pay for it yourself, you're looking for charity.
I live in a country where we gladly finance the health care of other people without looking for anything in return.
I really don't understand the lack of compassion that can ground such an ideology.
I never suggested there was anything wrong with financing health care that way. I don't bring up that he's looking for charity to criticize him or anyone else in his position. I bring it up to point out that in our ridiculous health care system, health insurance companies are making a fortune acting like charities, and it's coming out of their customers' pockets.
Not paid for by him, though, because his premiums wouldn't even cover his own medical expenses. That is the whole reason why health insurance companies would charge much higher premiums to people with pre-existing conditions or would turn them down.
>it spreads the risk among all subscribers.
Some people are much more likely than others to need expensive medical care. If you charge low risk and high risk people the same amount of money, then on average, the low risk people are going to be paying for a lot more medical care than they consume, and the high risk people are going to be consuming a lot more medical care than they pay for.
> If you can't pay for it yourself, you're looking for charity.
I hope you don't believe in Karma, because you're tempting fate. I doubt you'd strike the same tune if you or your loved ones had a severe and/or chronic illness that threatened to bankrupt you through no fault of your own.
Also, in the US, your health insurance is probably tied to your employment. Expecting someone to stay at the same job (on the same insurance) for the rest of their life after learning about some illness, and calling anyone who isn't able to do this a charity-seeker, is asshole behavior.
And I hope you'll take this exchange as a wake-up call to how your sensitivity on the topic is affecting your ability to think about it clearly. I'm not criticizing anyone. I'm stating a fact. Someone in the position I described is looking for charity. How you feel about the situation doesn't affect that.
>Expecting someone to stay at the same job (on the same insurance) for the rest of their life after learning about some illness, and calling anyone who isn't able to do this a charity-seeker, is asshole behavior.
Suggesting that needing charity due to circumstances outside of your control is shameful seems like the real "asshole behavior", which, if you think about it, is exactly what you are doing. I'm not criticizing anyone for needing charity. I'm pointing out that's what it is.
I'm pointing it out to demonstrate that health insurance companies are acting like charitable foundations and filling their pockets while doing so, and their customers are getting robbed to pay for it.
Sorry about your loss! My father got diagnosed with this about a year and a half ago, and the first paragraph of your post sounds very familiar. Not a clear (or rapid anyway) change in personality, but certain aspects of it seem to somehow become amplified. He's still able to do a lot of the same things as always, but they seem to turn into reflexes and mannerisms.
At this point he often falls into the verbal loops described in the article, and hasn't really been able to hold a conversation for quite a while. Exacerbated by his poor hearing. He's also extremely restless, and wants to run the washing machine and dishwasher and go for groceries many times a day. When my parents still owned a dog he'd take of for a three minute walk every hour, and he drives my mother nuts by constantly wanting to help out with housework but then being unable to comprehend the simplest of instructions.
He currently spends about a week every month in an assisted care facility, and my mother seems to have finally let herself be talked into looking for a permanent spot for him, though with Covid-19 is hard to tell what will happen and when.
It was a relief when we finally got the diagnosis after he was repeatedly hospitalized for unrelated stuff in late 2018 though. It had been obvious to everyone that knew him for at least five years prior that something was wrong, but he didn't display any of the obvious signs of Alzheimer's. I guess it took extended time spent around medical professionals and a thorough checkup for them to see that something was wrong.
Also to all the young people freaking out about the inability to concentrate: Relax! From everything I've seen and heard a telltale sign of FTD is complete obliviousness on the part of the patient.
The gradual decline slowly conditions you, like the proverbial frog in the pot of water. It was strange going back and reading some of his old emails and letters recently to try and find some info I needed. It was like, "Wow! He used to be really articulate and lucid and funny". I almost forgot that guy by the end :-(
If this story moves you, and you have the means, consider donating to CSF Leak research at Stanford.
Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carrol of Stanford's research has indicated, they seem to be highly misdiagnosed/undiagnosed as well.
I know HN has had posts about CSF Leaks before. I truly believe they're one of the worst things we face in this age that can actually be treated with 100% recovery in some cases. However, for far too many, that really means nothing as they'll be sent to a psych facility, nursing home, or become homeless, and die as a whithered husk of what was once a human before they have the slightest indication of what is actually wrong with them, let alone make their way to one of the few places that truly treat the condition.
No idea why I currently can't find a non walled version of the first link. It's important - and general googling would be "when to suspect a CSF Leak Ian Carroll"
Secondary to Dr. Carroll
Dr. Wouter Schievink at Cedars-Sinai also has good information... He's actually the pioneer of research IIRC.
Saved a dude from a diagnosis of dementia and spending the rest of his deluded days in a nursing home.
IIRC - in the end, based on decades of patient history, he just opened this guy up as a last resort and nearly missed - but did find the leak. Near full recovery.
It seems to be that there are some very high risk groups, like those with connective tissue disorders - specifically, Ehlers Danlos. Also, from Carroll's findings, a lot of people diagnosed with POTS are often misdiagnosed and truly have some small CSF Leak. Ehlers Danlos and POTS often go hand in hand as well...
I had a CSF leak repaired by Dr. Schievink at Cedars-Sinai. My diagnosis happened after I had an acute attack of intracranial hypotension shortly following a long and bumpy session of riding mowing. This attack involved a 'worst headache of my life' that was somewhat relieved by being horizontal. Getting to the hospital seemed too painful, so I stuck it out at home and the headache went away. A couple days later I developed a left sixth cranial nerve palsy, which persisted for around two weeks before I finally went to the ER. After a few days in the hospital and tons and tons of tests for infections, MRIs, lumbar punctures, etc, they decided that I had idiopathic hypertrophic pachymeningitis. That was the working diagnosis for about a week, when my neurologist called me back and told me that they thought they had found CSF leaked into the spinal canal, and so they believed I had a CSF leak.
So, the short answer is that diagnosis will be difficult, and there isn't really a test, but MRI with gadolinium contrast will show enhancement of the dura, and hopefully someone looking at it can see a leak if it is obvious. There are also cases of leaks being caused by a venous fistula, which does not image well.
For what it's worth, I had back-of-head-and-neck headaches intermittently for a while before this, most notably when riding rollercoasters (which I do miss). That is the only long term subtle 'sign' I can remember.
Hope this helps.
Edit: I should also probably add that my case is somewhat weird, caused by a bone malformation in my thoracic spine and difficult to localize with imaging. I had a T1 laminectomy to correct this. However, I'm not sure there are really 'standard' cases, except those that are iatrogenic due to LP or epidural in delivery.
If you don't mind answering, how old were you at the time and what was your proximity to Cedars-Sinai?
I have slight regret with not double booking an appointment with Schievink when he personally called me. For some likely completely unreasonable reason, I feel like Dr. Carroll is a bit better of a choice having had a child with a leak. Had an appt with Carroll a small ways out - was in San Diego for strange reasons at the time - was going to be gone by the date of the appt and have to fly in. Schievink very much thought I had a leak from history and others diagnosis (EDS & POTS) - but thought I may be in better hands with Stanford as I already had an appointment - the main reason I went after Schievink was because I was hoping to be seen before I left SD. For some reason, I made the choice to agree with him and stick with only Carroll.
Anyways... A ton of unfortunate things fell thru with some misscheduling at Stanford, and I'm still on a list to be seen by Carroll :(
While both doctors think it's likely that I have one, which is something they've both said they typically don't say over the phone, either way - I see Dr. Carroll as an absolute hero in these strange times we seem to be living in. As selfish as it sounds, I can only hope that man pioneers research into this for the rest of his life. Being on the receiving end of at least one (possibly two with CSF) medical diagnosis in which there's less quality researchers/surgeons in the Western World than can be counted on one hand, you grow to have very strange ideals as to what's truly important in life.
I was 30 when all of this transpired initally (I had my surgery at the beginning of last September). I actually live quite far away from Cedars, in Illinois, but forwarded my local medical records to Dr. Schievink after a lot of online research. Post-surgery I stayed with a friend from college who lives in Santa Monica, which was an enormous help, but it also wouldn't be so bad to post up in a hotel. From initial inquiries to the surgery took ~2-3 months, which surprised me.
I haven't interacted with Dr. Carroll, but my general impression of Dr. Schievink was very positive. Everyone in the whole process at Cedars was awesome. That said, I do still have some lingering issues recently that superficially seem spine-related, despite being assured that my saga was over. It has definitely been an improvement, though, relative to pre-surgery.
I'm sorry to hear to you're going through all of this, but there really is light at the end of the tunnel, and I hope you get there sooner than later.
If you have other questions, you can email me at my HN handle @ gmail and I will try to help as I can.
The way they describe this disease and his behavior, bending over backwards to keep him alive is just going to draw out the suffering of him, his family, his friends, etc. There's nothing bad on the other side of existence/nonexistence anyway, so why not just mercy kill what's left of the poor guy? It's either a quick and painless death or painful, slow disintegration from here on out.
Could it be that Lee's productivity frenzy eventually led to this disease?
I tend to practice the same style of getting things done during crunch time. I have the same behavior afterwards. Sometimes I can sleep a few days in a row after making a software release. And yes, taking a vacation with my girlfriend sometimes took the same shape: she was running circles in a new city while I was chilling at the hotel room trying to enjoy a few rare moments of rest.
I'm so sorry for your loss. This hit especially close to home because my grandmother has been suffering from degenerative mental disease for the last few years. I don't live in the same country as her anymore and every time I return, it's horrifying to witness just how fast a person loses their sense of "self".
I think degenerative mental disease like the one here is especially traumatizing since to most of the world, you're physically/visually still the same person. Also, the characteristics that formed your personality often morph into these harrowing alternations - in the case of my grandma - she was always immensely active and always on her feet. She now cannot sit for more than 30 seconds at a time and attempts to run away from home (with no particular destination in mind). She was (it feels strange to write past tense here) a great cook but now she enters the kitchen and has no idea what she's cooking or what step she is on. It is extremely difficult to keep her mind at ease at all. Her mind is so unable to focus or string thoughts together that she has resolved to loud abject shouting of gibberish (much like a toddler) since she has no idea how to convey what or how she got somewhere. But then for the briefest of moments she has complete lucid clarity and will ask me about my job and life, and offer to cook me my favorite dish.
Much like Lee's wife, I don't really know when my grandma's last "real" day was and what my next trip is going to bring sadly. It's a sad and slow torment.
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[ 4.7 ms ] story [ 414 ms ] thread>Holloway received his death sentence with pure calm. While his family cried beside him, he complimented a doctor for having a nice wedding ring.
xD
Conversations soon became impossible. Lee started chattering in repetitive, unceasing loops. He would tell Kristin: “We met at Cloudflare. We got engaged in Rome. We got married in Maui, Hawaii.” He repeated it hundreds of times a day. Then the loops got shorter, more cryptic. He spoke fewer sentences, instead muttering sequences of numbers or letters.
At the same time, given the flashes of lucidity pointed out in this article, you have to wonder if others talking about his condition so much might make him feel like a walking corpse when those hit.
I’ve really struggled to wrap my mind around his condition. I don’t think it’s frustrating for him. He seems to have lost the emotion to be frustrated.
I think we all have a sense of Alzheimer’s because we’ve all forgotten something. This isn’t that. Lee’s memory, if anything, seemed to improve and he’d bring up little details from when we first worked together I’d long since forgotten. What seemed to go away was his ability to process those memories into something more.
It’s hard to imagine losing the ability to imagine. And, as his friend and colleague, it was incredibly frustrating when we just thought he was checked out. And then devastating when we learned all this time he’d actually had a disease.
I do wonder if some of his genius came from his ability to shut down some of the other noise in his life. And if the disease, for some time before it became debilitating, was almost a superpower. I’ve never met an engineer like him.
I miss him every day.
Do you feel like the article was accurate and fair to the people involved?
I got the advance copy of the article last night and it’s been an emotional 12 hours reliving a lot of the last 18 years I’ve known Lee. But I’m happy we helped create something Lee’s two sons will be able to read and see a little bit of what an incredible person their dad was.
My prayer is that while this time is emotional, the process and article also provide a degree of healing as well. Again, thanks for sharing.
Terribly sorry for you and your friends and colleagues’ loss. Thank you and everyone else for doing this for his children.
Thanks again for your work, both on the company and the article.
I think that you're kind of right: I know one engineer who is like that and he it's his autism which makes him brilliant. He could operate in deep-thought mode all the time - he is extremely intelligent and extremely focused. There are other people who can hit it for patches - I could do it for 3-4 weeks at a time when I was 21. At 39 I struggle to do it for an hour a month (kids change you more than anything else).
We really know so little about how our minds and bodies work and that's something we need to change. We should be able to identify and fix conditions like this.
Makes me think that some of us here are wasting our abilities on start-ups and systems when we could be working on fixing much more complex systems.
This can go in the wrong direction. Nobody wants to be McNamara, though being Zuckerberg isn't that bad.
"Be kind; everyone you meet is fighting a hard battle."
and Patrick Farley's version from his series "The Spiders"[1]:
"Show kindness to every person you meet. No matter how ill-tempered a man may seem, you have no idea what private agony he may secretly be struggling with."
[0] https://quoteinvestigator.com/2010/06/29/be-kind/
[1] http://www.electricsheepcomix.com/spiders/3.5/01_hospital.ht...
Yes. I can think of a few examples of this.
Lee bought a few material things, but he was mostly able to live out of his backpack for years at a time, at least before he got married. He didn't have many material desires (no fancy car, clothes, or big gaming computer). He periodically lived on other people's couches (including mine) between starting university and getting married.
I remember he drove through at least a few red lights because he was in the zone deep in thought processing some coding concepts / business plans in his mind while driving. Once I noticed this, I didn't let him drive me; instead he started to code on his laptop in my passenger seat.
When we were waiting in line to rent a UHaul-type truck, he was pacing the retail waiting area thinking through some coding for a future Unspam feature. I remember it because the guy standing behind me saw him as a stranger threat and started to get anxious that Lee was pacing in a hoodie nearby. I mention it because he never concentrated much on the small daily tasks like waiting in line and mostly overloaded those tasks to optimize his long term goals (eg. startup success).
He didn't write big architecture docs (possibly the part of his work that didn't scale much), but his mental capacity to juggle lots of small facts and tasks was pretty incredible. It worked great with a small team with very low turnover. I miss those days when I just checked in with him 2-3 times a day rather than having to spend a lot of mental effort to figure out how to serialize lots of trivial stories/subtasks into Jira.
I met back with them a year later and he was very dependent upon his cell phone to look up people on Facebook, places on Google Maps, movies on IMDB, etc. (basically all nouns) in real time during the conversation to fill in the gaps in his memories. I lived with him for maybe 5-6 years and he had to look up my Facebook profile and pictures to try to pick up on any nostalgia that might catalyze a memory.
I suspect there is an underlying current of frustration, but probably not a high level cognitive realization (at least not a sudden one) that his mind is degrading.
> many of the neurologists who study it believe it is underdiagnosed
This is a tragedy. Of course it's underdiagnosed. Everyone around you would just think you're an asshole. In the article, it sounds like so many people fought right and were patient and loving. How many cases do we never hear about, get fought abusively, and push the last shattered remnants of a person into drugs, suicide, etc.
Thank you. I watched that movie with my wife 15 years ago, now, and it remains the scariest, saddest movie I've ever seen.
It's just difficult for me to envision a crueler God if that is indeed the case. A person who has died long before their body gives way, only to be a constant burden, with virtually no joy, and a constant reminder that your loved one is dead, yet still here.
In the worst cases I say unreservedly that it is a huge relief when the person's body finally joins their mind in death.
https://youtu.be/vx8ZMkWL8hw
[1] https://en.m.wikipedia.org/wiki/1755_Lisbon_earthquake
[0] https://en.wikipedia.org/wiki/Problem_of_evil#Responses,_def...
I don't think anyone has the perspective to make a definitive judgement like that. The situation could be like a young child judging his parents to be cruel and uncaring for making him go to school, which he dislikes. There could be unknowns that would change the judgement if understood.
It wasn't a comparison, but an attempt to illustrate how things may look different based on your knowledge and understanding. Obviously such an illustration is going to be trivial compared to the real thing, since you have to substitute something simple that everyone knows for something no one does.
The non-pathological of us each have the free will to choose to self-evolve ourselves during our lives towards greater compassion for all those around ourselves, or to selfishly gather as much material pleasure as we can for ourselves regardless of the cost to others, be it monetary, emotional, or physical.
We are all actively evolving ourselves every day of our lives, for better or worse, even if all it amounts to is repetitively strengthening one's already accepted habits and attitudes. The exception being when disease or tragedy takes away our ability to rationally choose, as happens with people such as Lee. That is where compassion from our fellow human beings is part of the potential we must each welcome, for such is the moral requirement of being a human being.
We have been given what is both a great gift and a great responsibility with our free will and the mind required to learn and wield it justly and for the benefit of the whole and not just some preferred sub-group.
God is not a white man (full-disclosure: white guy here); It didn't give us free will only to then take it back from us because that means we can become, for example, callous, self-serving, corrupt, power-seeking, hypocritical fake-Christian deceivers of men.
No. The polarity of our morality extends to whichever direction the person can imagine. That is why we are both treasured above all creation and capable of the most brutal of atrocities.
We are free to be good or evil and that means we are also free to not give a fuck.
If you are hoping to make some sense of it all, I found Man's Search for Meaning by Viktor E. Frankl really altered how I see suffering and my place in the world. It's a very concrete book, and outlines a way to live with meaning without needing God (though totally compatible with faith).
Stay strong friend, I believe in a tragic optimism[0] like that outlined in Frankl's 1984 postscript.
[0]: https://www.goodreads.com/quotes/6807951-i-speak-of-a-tragic...
edit: corrected the quote and added a link
I don't think that this has any bearing on the existence of God, however. Humans are the ones who have created such an overwhelming and toxic physical environment and disconnected social one. For God to truly endow us with free will, He had to allow us to fail, even this miserably, and to cause our contemporaries and descendants to suffer for our failures. We have the hope of Christ's return and eternal life but only after everyone has been given the opportunity to turn to God for hope on earth.
I don't mean to prosthletize — this is how I understand the world and helps keep me hopeful in times of grief, and I hope it helps you too.
This argument isn't really theologically sound. If God exists, he's the one that created a biological system that allows for something as horrific as dementia. That literally has nothing to do with anything humans have done. It's pointless suffering.
> and to cause our contemporaries and descendants to suffer for our failures
Who's failures caused dementia? Certainly wasn't our ancestors fault.
Personally, I gain more comfort from the idea of an impartial universe, than a God who thinks this level of suffering is necessary.
But I do see what you're asking — how God seems to step in more often in the OT. Thinking of all of human history from ~4000BC until now where Mankind "grows up" over time, the concept of God as Father works — parents put a lot of restrictions on their kids when they're young to keep them safe, and remove those restrictions over time. Even if the child does something unsafe at a certain point a parent just has to say "now that you know the consequences, you have to live with them."
So for example, the tragedies which occur in your nightmares, after you wake, are given a different interpretation- the interpretation of "non-reality", i.e. it didn't really happen in some basic way that puts them into the category of "life non-tragedy".
From God's (or "a god's", for our dedicated atheists) POV, there is some enclosing context to the events of our lives that makes this mess we call reality "make sense". We don't have that perspective, so we think we suffer, pointlessly.
Along the chain from amoeba to goldfish to humans the understanding of events in our shared environment by each species changes. We think of that change as progressively achieving a "deeper understanding" of reality. The zinger in this recitation of prosaic facts is: your consciouness is not the last one in the chain.
This is what Christians experience (and think of) as "faith". Faith in the wisdom or sense-making of a transcendent God and His plans.
You're begging the question. It doesn't point to that at all.
Furthermore, I'd feel terrible accepting that "fact" if I were faithful. It would reduce my faith to that in a demiurge who can't (ergo impotent) or won't (ergo ignorant or malicious) build/maintain a reality that (1) makes sense in the enclosing context and (2) doesn't require the depth of horror and pain for its components/participants that this one does.
One interesting thing is that the language and imagery used by the mystics of these different and separated religious traditions are often indistinguishable from each other- it's not clear if it was St. John of the Cross or Augustine or Zen Masters Ikkyu or Dogen who is saying them.
On thing they refer to in this transcendent reality is apprehension of "the coincidence of opposites". So for example, the obvious fact that a thing cannot both be and not be at the same time is itself contradicted or "resolved". In logic we say "not both A and not A" (or else a contradiction is permitted and from there literally anything can be proven).
If I were a goldfish, no matter how right the math you read to me was, I would not understand it, you or anything it referred to. Even as the atomic bomb it described exploded, I still would not understand the nature of reality which now quite literally impinged itself on my flesh.
What would it feel like to be confronted with that kind of knowledge? Would we recognize some formulation of it but reject it, as in: both A and not A?
Would it be something impossible, existing outside of what appears to us to be exhausted possibilities?
Not A Not not A Not both A and not A Not not both A and not A. etc?
We can feel the limits of our own thinking when we reach something which is logically impossible. We just can't get our thinking around these things; contraditions seem like an absolute dead end, leading everywhere and nowhere.
Are there things in our lives which we literally experience, like an atomic bomb disntegrating a goldfish, which even as they touch us and we feel them, we simply fail to comprehend the "real" meaning of them? The breeze? A look? A birth? Suffering?
Spirtual insight may be a thing like mathematicqal talent- some people have a talent for it and some people don't. Such a talent may be completely disconnected from normal intelligence. To people who don't have it, it seems like garbage, i.e. self-contradictory, self-pacifying wishful thinking.
Now the demiurge is a utility monster.
> this is not a foolproof argument
Argument? It's an admission.
How is the demiurge taking utility from humans if humans ending up in heaven is the optimal outcome for both humans and diety?
> Argument?
It’s an argument that a diety can both be omnipotent and benevolent if humans don’t know true pain or pleasure in their earthly lives. After all, both earthly pleasure and pain are temporary, so if you can conceive of eternal happiness it might render earthly suffering negligible in comparison.
That is what you're saying. It's isomorphic to your argument; it is your argument's essence.
Expressed that way, the issue becomes apparent. We cannot conceive of something; it is inconceivable. But that inconceivability is exactly what the original argument is asserting - it's a thing beyond human conceptualization. Exactly.
All parties to the argument find agreement on this point.
In the end, is it really that cruel, when compared to creating a universe that is effectively trying to kill us all every single day...? From animals and plants in the jungle, to solar flares and asteroids, everything in nature is to us what a garrison of armed Stormtroopers is to Han Solo: they might miss most of the time, but it’s not going to be for lack of cruelty or intent.
There is no religion without the person actively trying to be a better person to every single person around them. It doesn't matter what spiritual practices they do or don't do, we are each measured by our hearts with respect to how we treat every person we encounter.
Religion's only goal is to get us to work together cooperatively across all divisions of humanity (from form of religion, to gender identification or sexual preference, to ethnicity or culture) to create caring, accepting societies. Right now, our world's state is the result of our societies being based on competition. That is why there are so many destitute homeless people. The system itself doesn't give a shit about them because the system itself only cares about money.
And this is all the result of human making choices based upon their selfish desires, humans in their packs taking as much as they can for themselves while callously ignoring out-group members. That is not human, and is literally inhumane. For that same society to produce Jeff Bezos demonstrates its brokenness that is also its design.
The problem is that the vast majority of so-called religious folks are only doing so to be a member of the alpha group, instead of being interested in how they can be a better member of a better, all-inclusive society. We have mammalian bodies and those structures inform our potentials. To be human is to rise above that animal heredity and embrace the virtues of humanity: caring, active, effortful compassion being essential.
This is why a prominent Rabbi spoke at Muhammed Ali's funeral. They were both Men of God who spread love and unity amongst and between their different cultures. Anywhere you find universal love and respect for all others, you find God's Religion, whichever form it takes in its society.
And legion are those that selfishly deceive in the name of religion or even try to create their own religions. The child rapist Catholic Priest does not denigrate the Message of Love present in Jesus' form of God's Religion; he only proves his perfidy and that of the organization that hides his sins and felonies from his prey's society.
Also, a priest can't honestly say they love you and serve Jesus if they're raping your children in the back room.
There is truth and there are lies and falsehoods. Nuance is required to discern between them. Most people are just too intellectually lazy to even try. That ignorance leads to many of the systemic problems of our world, not the least of which are religious groups like ISIS/ISIL and the Catholic Church deceiving people with their lies, hypocrisies and oppressions.
Dunning & Kruger, dude. I know where you land on the chart, and I know that you don't know where you land yet think you do.
Also he lost a lot more than his self here. Terrible condition.
Are there any remotely promising paths to treating or preventing neurodegenerative diseases like these in the future? Or at least to slow down the progression? Are there any experimental drugs? Will we likely just need to wait until targeted in vivo genetic engineering is understood and mastered?
I know those are broad questions, but suffering from something like dementia, Alzheimer's, or Parkinson's, or having a loved one suffer from it, seems like one of the cruelest fates imaginable. The helplessness of the doctor saying there's basically nothing you can do other than to try to eat healthy and exercise... If I was given such a diagnosis while still lucid, I think I would want to try every experimental treatment available, if any exist. I'd accept almost any risk over that horrifying, inevitable outcome.
Exercise and healthy eating is probably still a good idea, but basically it just seems like hoping for the best without real knowledge of what may or may not be helping or hurting.
This is a beautifully written article but it hit me pretty hard, I can understand the terror having faced it for a few months, I think if I got a diagnosis of dementia I'd head to Switzerland at the point where I still could.
My heart goes out to Lee and his family.
Search the NYTimes for "Frontotemporal Dementia", and you'll find several stories, all similar :-(
I’m convinced that the genetic effects that provide us with extreme visualization and problem solving skills are related to this particular failure mode, where schizophrenia is also common in the family tree.
I think about this one a lot, how easy it is for pattern recognition to misfire and synthesize conclusions and connections that are partially rational and correct, but with one bad piece of input data skewing them into fantasy. Sometimes the conclusion may be right, but its magnitude, impact, or applicability are grossly overestimated. Part of what makes such gifted people is the ability to imagine, hypothesize, and use hypotheticals. This giftedness often coincides with the ability to make many parallel what if thoughts and identify the most probable. At some point, hypotheticals morph into faith and what was once a thought experiment becomes belief. What ifs break down into belief "this is actually happening, this is reality." It becomes its own compounding feedback loop, as faulty conclusions layer on top of each other over time.
His younger brother, my uncle, was diagnosed with schizophrenia at age 20 after becoming severely erratic while away from home on an LDS mission. The diagnosis devastated their family, and has been followed by decades of difficult treatment and heartbreak.
What is it about my uncle that pushed him over the edge? Environment? Genetics? Pure chance? I wish I could know. My dad says that there's not much left of him except for a few moments here and there.
My dad had a big family, and he's said that his younger brother always showed the most promise, growing up. Smart, charming, super friendly. 30 years on he continues to greet everybody with a smile and hug, even if he doesn't know them!
It's sobering to see it in my own family, and it keeps thoughts like the one you articulated so well in the back of my mind constantly.
"The gist, then, is that someone is “himself” because countless mental artifacts stay firm from one day to the next, anchoring that person's character over time."
I have read reports that latent schizophrenia is often revealed when people travel abroad. Maybe if your environment and surroundings change drastically, your mind loses its sense of "self" that was based around anchors to the rest of the environment.
This journal article touches on this:
"Long distance travel has long been known to aggravate pre-existing psychosis.... Travel can be a destabilizing life event7 with many potential hazards to mental health, from the effects of drugs used for prophylaxis against infection, to homesickness, to disrupted circadian rhythms, to culture shock." http://www.ijtmgh.com/article_33029_738f7bb0f6124261891cf610...
Saying this as someone whose mother scored in the top 1% on the SAT and was schizophrenic.
Schizophrenia is different that it is at least partially behavioral. The brain is more like an adaptive neural network, so it's sometimes hard (or impossible) to disentangle hardware from "behavioral configuration". In the case of schizophrenia I think (not a doctor!) there is a (perhaps structural) disposition toward modes of thinking, psychosis, delusion etc. -- thought and behavioral patterns that develop if there is inadequate self-assessment in place (which is how I would explain identical twins differentially developing the condition), and experiences of stress and trauma that can disrupt benign thought.
It is a terrible condition... I have close family members with psychosis too (that's somewhere in the spectrum of bipolar to schizophrenia). For me it appears quite clear why intelligence has a protective effect (and one of the many reasons I value, and cherish, intellectual activities of all kinds so much).
Counter to opinions elsewhere (where you shouldn't live in the "shadow of the disease" through genetic screening, family history, etc.), I personally do think it's important to be mindful of it. That way at least symptoms may be recognized early and treatment can be more effective (since it is at least partially treatable and has a large behavioral aspect). Here's hoping we never develop it.
Startup != assured success.
While Lee's personality changed a lot over time, he was always the guy who got more out of hanging out in a garage building something than someone touring France/Italy/etc.
Oh man, was that a kick in the guts when I got to that bit. My Dad was diagnosed with that in the past year, (after obviously struggling for a while), and declined rapidly. He had a different variant, and indeed the one thing that DIDN'T change was his personality. In fact, that's what kind of fooled me for a while. He would still trot out his usual bad jokes and regular phrases, but after a while you realize these are almost like reflexes, and often wouldn't really make sense in context.
It was interesting to see for Lee how this seemed amplified after heart surgery. My Dad had really bad "post-operative delirium" for about a month after major heart surgery, and while he recovered somewhat, that was definitely the start of his major decline.
Sadly, after moving into a care facility in mid-March, within a couple weeks he was in hospital after contracting Covid-19. He passed away on the 4th of this month from it. The only good to come out of all this was that I'd visited him many times over the past couple years and said "goodbye" many times thinking it might be the last time, even if just mentally and not physically, I'd get to see "my Dad", as I knew him.
Apparently it is often a genetic disorder that can be hereditary, and you can get tested for the genetic markers. As a coder/manager myself who depends on my mind for work, and enjoys being mentally challenged and active, (and I also have young kids), something like this scares the crap out of me. I'm not sure I want to know if I might have it. For one thing, being in the U.S. healthcare system, if I did have the markers, would that then count as a "pre-existing condition" I'd have to disclose?
That is a strange coincidence. Could changes in bloodflow have an impact on brain cells?
Here's a 2018 piece discussing research from the Mayo Clinic focused on apparent anesthetic damage in patients older than 70.
https://www.sciencedaily.com/releases/2018/07/180719112024.h...
A quick search finds a few hits, e.g. from https://perioperativemedicinejournal.biomedcentral.com/artic...
> Delirium is associated with negative hospital outcomes including a tenfold increased risk of death, a fivefold increased risk of nosocomial complications (Inouye 2006), poor 1-year functional recovery, and postoperative cognitive decline (Saczynski et al. 2012). The long-term cognitive decline seen in some patients after the development of delirium is similar to that of Alzheimer’s patients (Pandharipande et al. 2013). With reports of up to 50 % of patients over 60 years old developing postoperative delirium following cardiac surgery (Rudolph et al. 2009), this patient population poses a major burden for healthcare.
It had side effects.
For the better part of a year afterwards, I kept finding myself unconsciously substituting completely incorrect words into written correspondence, I was irritable almost constantly, my short term memory was shot, and I had hallucinations and attacks of aphasia - I’d be walking down the street, or in the shower, or in a damn meeting, and I’d not only forget where I was but I’d lose object permanence and recognition - couldn’t tell taps from cats, cars from shoes.
It got better, over time, but there was very definitely a long mental hangover from it. I do have medical quirks, like I can’t tolerate opioids (they worsen pain and make me vomit), and I’m a carrier of a whole bunch of degenerative diseases (thanks, inbred aristo dad), and when I had surgery I was weakened from years of still mysterious illness - they thought my GB was the root cause, but no - stress - leaving tech fixed me.
Anyway. I can readily see how, with someone with a poised avalanche of genetic mental disorder, it can be enough to completely push them into the abyss.
Either way my memory has not been great since. My wife is disappointed when I forget meaningful conversions from a week ago. I struggle at times to notice trivial errors, really struggle. I can look over the same email and miss several mistakes. Other days I'm clear, I don't make many mistakes and I can spot them easily.
I still managed to get an Engineering degree and hold down regular employment as a software developer. But there are periods of time where my focus and productivity are just not there. I suspect this will hold me back in my career. But I'm thankful I can function as well as I can and have survived to this point.
I don't have specific recommendations, but I think that the potential for recovery should be much higher than what people with neurodegenerative diseases suffer from, like what was described in this article.
There're a lot of risk and uncertainty trade-offs, and everyone reacts to things differently due to their genetics and what they're suffering from, but nootropic substances could potentially help here. They could possibly help as a short-term aid that improves memory and attention to detail while the nootropic is in effect, and some can actually potentially create long-term improvements.
They're very under-studied, and they definitely require a lot of careful research, gradual self-testing, and acceptance of some risk (some nootropics have almost no risk, and some have a moderate level), but it could be worth looking into.
Something as simple as a prion can completely destroy it and then there's Phineas Gage, someone whom all neurobio students learn about on day one of their course. Neuroplasticity can be quite amazing.
https://en.wikipedia.org/wiki/Phineas_Gage
I don't think it's exactly correct to say "a prion" can destroy it. One single prion I don't think would cause significant damage in most cases, if there could somehow be only a single one. The issue is that it's believed a prion will gradually cause nearby proteins to misfold and also become prions, and then it probably starts recurring exponentially like a pathogen infection, and your brain physically deteriorates and falls apart with no way to stop or reverse it. A very similar deterioration process appears to happen with other disorders like Alzheimer's and the form of dementia discussed in this article, though the root cause still isn't understood.
I mean, they had a brain tumor which could've been causing damage itself, plus radiation to the brain, invasive brain surgery, altered brain blood flow during the surgery, general anesthetic... That's serious stuff affecting the most complex machine we're aware of.
The brain can be capable of amazing feats of recovery, but it's always going to vary based on someone's pre-existing genetics, environment, age, and the specific damage they might have incurred. Recovery back to baseline absolutely may be possible for them, but there's really no way to know that for sure when dealing with something so serious and without knowing many other factors. Hope is good, but sugarcoated false hope isn't.
I don't think I'm sugarcoating, at least not in the sense of how the word is usually defined. We know neuroplasticity is real. It isn't just some placebo. Regardless of what part of the brain was affected, because of neuroplasticity, he/she can recover functionality through exercise and training. I agree with you that this won't always be the case, and at some point, brain dead is pretty much brain dead like in the case of survivors of gunshot wounds to the head for example. But given the eloquence of the poster's comment, I think the kind of situation we're looking at here is of a different class.
Dementia and schizophrenia are present in my family as well and caring for those in the later stages has been really hard.
I found myself torn by the same question of whether to test for genetic predisposition. After reading The Gene by Siddhartha Mukherjee, whose author is in a similar position, I have found some comfort in deciding not to test for now. As he says in an NPR interview:
> There's no one-to-one correspondence between a genome and the chances of developing schizophrenia. And until we can create that map - and whether we can create that map ever is a question - but until I - we can create that map, I will certainly not be tested because it - that idea - I mean, that's, again, the center of the book. That confines you. It becomes predictive. You become ... a previvor (ph). A previvor is someone who's survived an illness that they haven't even had yet. You live in the shadow of an illness that you haven't had yet.
https://www.npr.org/2017/05/12/528097708/the-power-of-genes-...
Otherwise it seems like whether or not you test the reality is set independent of your knowledge of it. I'd like to think that I'd want to test given that, but I suppose it's hard to know how I'd act without really being in that position.
I loved his book, but I think I disagree with him on this - feels like a rationalization of an irrational thing.
If there was a conclusive test, I would definitely take it for the sake of future offspring. Otherwise, it would likely give me more anxiety than useful information.
Insurers cannot deny health coverage, cannot charge higher costs, or subject people with pre-existing conditions to a waiting period
You may be better off getting life/long term care insurance before getting tested, but other than that there is little reason to avoid being tested.
And you must be confident that Trump will lose, since the 5-4 majority that saved Obamacare last time will not survive a few more Republican appointments.
https://en.wikipedia.org/wiki/List_of_justices_of_the_Suprem...
That said, many justices have not voted as expected. In other cases political parties have swapped positions on various issues etc.
I’ve been managing a chronic condition for decades, and I’ve never had coverage denied because it was “preexisting.”
Maybe it was only if you were buying coverage outside a group it would be an issue, but I don’t know.
Regardless I many people who had preexisting conditions pre-ACA, and it never affected coverage.
For disability insurance, or life insurance, it’s probably a different story.
This mostly affected the individual and small-group markets, in which a pre-existing condition either disqualified you for coverage, made it prohibitively expensive, or explicitly excluded coverage for that condition (sometimes, the exclusion was only for a set period of time).
Typical failure modes were: individuals unable to get coverage on the open market; small businesses and non-profits that offered employees health insurance being forced to fire people because they got expensive illnesses and their insurance providers threatened to 10x their premiums; etc.
It made entrepreneurship and freelancing a much harder choice for many (typically older-than-30) folks, especially since you risked getting fired & losing insurance if you worked alone or for a small-ish firm.
Some states had remedies for these issues -- either through a high-risk pool for people who were rejected in the individual market (though often these policies had coverage limits that made them not ideal), or through guaranteed-issue insurance in the small group market (i.e., if you and a partners start a business, insurance companies in your area who serve small groups HAVE to a) insure you, b) not charge you more than 10% the average rate, and c) renew your insurance when it's up for renewal, usually annually).
California in particular had both these in place pre-ACA.
Ask me how I know. :/
I'm sure the people who pay premiums for health insurance would hope so. If you already know you have a condition that's going to cost a lot of money to treat, you're not looking for insurance. If you can't pay for it yourself, you're looking for charity.
Not paid for by him, though, because his premiums wouldn't even cover his own medical expenses. That is the whole reason why health insurance companies would charge much higher premiums to people with pre-existing conditions or would turn them down.
>it spreads the risk among all subscribers.
Some people are much more likely than others to need expensive medical care. If you charge low risk and high risk people the same amount of money, then on average, the low risk people are going to be paying for a lot more medical care than they consume, and the high risk people are going to be consuming a lot more medical care than they pay for.
I hope you don't believe in Karma, because you're tempting fate. I doubt you'd strike the same tune if you or your loved ones had a severe and/or chronic illness that threatened to bankrupt you through no fault of your own.
Also, in the US, your health insurance is probably tied to your employment. Expecting someone to stay at the same job (on the same insurance) for the rest of their life after learning about some illness, and calling anyone who isn't able to do this a charity-seeker, is asshole behavior.
>Expecting someone to stay at the same job (on the same insurance) for the rest of their life after learning about some illness, and calling anyone who isn't able to do this a charity-seeker, is asshole behavior.
Suggesting that needing charity due to circumstances outside of your control is shameful seems like the real "asshole behavior", which, if you think about it, is exactly what you are doing. I'm not criticizing anyone for needing charity. I'm pointing out that's what it is.
I'm pointing it out to demonstrate that health insurance companies are acting like charitable foundations and filling their pockets while doing so, and their customers are getting robbed to pay for it.
At this point he often falls into the verbal loops described in the article, and hasn't really been able to hold a conversation for quite a while. Exacerbated by his poor hearing. He's also extremely restless, and wants to run the washing machine and dishwasher and go for groceries many times a day. When my parents still owned a dog he'd take of for a three minute walk every hour, and he drives my mother nuts by constantly wanting to help out with housework but then being unable to comprehend the simplest of instructions.
He currently spends about a week every month in an assisted care facility, and my mother seems to have finally let herself be talked into looking for a permanent spot for him, though with Covid-19 is hard to tell what will happen and when.
It was a relief when we finally got the diagnosis after he was repeatedly hospitalized for unrelated stuff in late 2018 though. It had been obvious to everyone that knew him for at least five years prior that something was wrong, but he didn't display any of the obvious signs of Alzheimer's. I guess it took extended time spent around medical professionals and a thorough checkup for them to see that something was wrong.
Also to all the young people freaking out about the inability to concentrate: Relax! From everything I've seen and heard a telltale sign of FTD is complete obliviousness on the part of the patient.
The gradual decline slowly conditions you, like the proverbial frog in the pot of water. It was strange going back and reading some of his old emails and letters recently to try and find some info I needed. It was like, "Wow! He used to be really articulate and lucid and funny". I almost forgot that guy by the end :-(
Cerebrospinal Fluid Leaks are something that can completely mimic a large amount of FTD symptoms, and even in the care of utmost professionals, can be near undetectable - and somehow, treatment can be as beautifully simple as a one and done injection... to a hellish guessing game and years of attempts. As Dr. Ian Carrol of Stanford's research has indicated, they seem to be highly misdiagnosed/undiagnosed as well.
I know HN has had posts about CSF Leaks before. I truly believe they're one of the worst things we face in this age that can actually be treated with 100% recovery in some cases. However, for far too many, that really means nothing as they'll be sent to a psych facility, nursing home, or become homeless, and die as a whithered husk of what was once a human before they have the slightest indication of what is actually wrong with them, let alone make their way to one of the few places that truly treat the condition.
Dr. Ian Carroll is arguably the best resource in the world. Starting here is probably a good choice.
https://profiles.stanford.edu/ian-carroll
https://www.mdedge.com/neurology/migraineresourcecenter/arti...
https://youtu.be/QyvWxobqKrc
https://youtu.be/g5lsFIDzazc
No idea why I currently can't find a non walled version of the first link. It's important - and general googling would be "when to suspect a CSF Leak Ian Carroll"
Secondary to Dr. Carroll
Dr. Wouter Schievink at Cedars-Sinai also has good information... He's actually the pioneer of research IIRC.
Saved a dude from a diagnosis of dementia and spending the rest of his deluded days in a nursing home.
https://www.nytimes.com/2017/11/02/magazine/why-was-their-br...
IIRC - in the end, based on decades of patient history, he just opened this guy up as a last resort and nearly missed - but did find the leak. Near full recovery.
It seems to be that there are some very high risk groups, like those with connective tissue disorders - specifically, Ehlers Danlos. Also, from Carroll's findings, a lot of people diagnosed with POTS are often misdiagnosed and truly have some small CSF Leak. Ehlers Danlos and POTS often go hand in hand as well...
https://www.mdedge.com/neurology/migraineresourcecenter/arti...
So, the short answer is that diagnosis will be difficult, and there isn't really a test, but MRI with gadolinium contrast will show enhancement of the dura, and hopefully someone looking at it can see a leak if it is obvious. There are also cases of leaks being caused by a venous fistula, which does not image well.
For what it's worth, I had back-of-head-and-neck headaches intermittently for a while before this, most notably when riding rollercoasters (which I do miss). That is the only long term subtle 'sign' I can remember.
Hope this helps.
Edit: I should also probably add that my case is somewhat weird, caused by a bone malformation in my thoracic spine and difficult to localize with imaging. I had a T1 laminectomy to correct this. However, I'm not sure there are really 'standard' cases, except those that are iatrogenic due to LP or epidural in delivery.
I have slight regret with not double booking an appointment with Schievink when he personally called me. For some likely completely unreasonable reason, I feel like Dr. Carroll is a bit better of a choice having had a child with a leak. Had an appt with Carroll a small ways out - was in San Diego for strange reasons at the time - was going to be gone by the date of the appt and have to fly in. Schievink very much thought I had a leak from history and others diagnosis (EDS & POTS) - but thought I may be in better hands with Stanford as I already had an appointment - the main reason I went after Schievink was because I was hoping to be seen before I left SD. For some reason, I made the choice to agree with him and stick with only Carroll.
Anyways... A ton of unfortunate things fell thru with some misscheduling at Stanford, and I'm still on a list to be seen by Carroll :(
While both doctors think it's likely that I have one, which is something they've both said they typically don't say over the phone, either way - I see Dr. Carroll as an absolute hero in these strange times we seem to be living in. As selfish as it sounds, I can only hope that man pioneers research into this for the rest of his life. Being on the receiving end of at least one (possibly two with CSF) medical diagnosis in which there's less quality researchers/surgeons in the Western World than can be counted on one hand, you grow to have very strange ideals as to what's truly important in life.
I haven't interacted with Dr. Carroll, but my general impression of Dr. Schievink was very positive. Everyone in the whole process at Cedars was awesome. That said, I do still have some lingering issues recently that superficially seem spine-related, despite being assured that my saga was over. It has definitely been an improvement, though, relative to pre-surgery.
I'm sorry to hear to you're going through all of this, but there really is light at the end of the tunnel, and I hope you get there sooner than later.
If you have other questions, you can email me at my HN handle @ gmail and I will try to help as I can.
I tend to practice the same style of getting things done during crunch time. I have the same behavior afterwards. Sometimes I can sleep a few days in a row after making a software release. And yes, taking a vacation with my girlfriend sometimes took the same shape: she was running circles in a new city while I was chilling at the hotel room trying to enjoy a few rare moments of rest.
Reading the whole story rang a few bells to me.
From what I remember, he was also born prematurely and spent weeks in a NICU.
Also worth noting that the disease didn't ease up after he stopped working, so the suggestion that "working less" might have avoided it is not clear.
I think degenerative mental disease like the one here is especially traumatizing since to most of the world, you're physically/visually still the same person. Also, the characteristics that formed your personality often morph into these harrowing alternations - in the case of my grandma - she was always immensely active and always on her feet. She now cannot sit for more than 30 seconds at a time and attempts to run away from home (with no particular destination in mind). She was (it feels strange to write past tense here) a great cook but now she enters the kitchen and has no idea what she's cooking or what step she is on. It is extremely difficult to keep her mind at ease at all. Her mind is so unable to focus or string thoughts together that she has resolved to loud abject shouting of gibberish (much like a toddler) since she has no idea how to convey what or how she got somewhere. But then for the briefest of moments she has complete lucid clarity and will ask me about my job and life, and offer to cook me my favorite dish.
Much like Lee's wife, I don't really know when my grandma's last "real" day was and what my next trip is going to bring sadly. It's a sad and slow torment.