What Happened to Lee

> 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?

I'm so sorry for your loss.

>> 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?

It might be the anesthetic.

I researched it at the time (I'd not heard of it when it occurred) and it is apparently quite common.

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.

My suspicion would be that the general anesthetic is the primary cause.

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.

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.

https://www.sciencedaily.com/releases/2018/07/180719112024.h...

I'm so sorry for your loss.

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-...

FYI, preexisting conditions stopped being a major issue with heath insurance after the Affordable Care Act (Obama Care) got passed: https://www.policygenius.com/health-insurance/pre-existing-c...

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.

I don't know if we can count on the ACA staying around forever.

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.

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.

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.

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.

CSF leaks/hypotension are also potentially implicated in frontotemporal dementia: https://journals.lww.com/neurotodayonline/Fulltext/2002/0900...

I find the Obamacare rule about preexisting conditions confusing.

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.

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.

Ask me how I know. :/

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.

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.

He's looking for health care, actually.

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.

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.

> 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.

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.

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.

Omg. I've been under 4 times. I think the last two had similar impacts, and I still have a hard time finding proper words from time to time.

They get the exact same thing, actually. That’s how insurance works (or is supposed to): it spreads the risk among all subscribers.

I just wanted to say that I'm sorry you're going through this. It must be very difficult. I hope you do recover. Best of luck!

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.

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.

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.

  the 5-4 majority that saved Obamacare last time will not survive a few more Republican appointments

You seem unaware that Chief Justice Roberts authored the opinion upholding ACA.

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.

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.

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.

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.

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.

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 you're going through this too.

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 :-(

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

> 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.

https://en.wikipedia.org/wiki/Phineas_Gage

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.

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.