Sandra did a wonderful piece in capturing Lee, his family, his work, and his degeneration. Lee was a coworker and roommate of mine for years.
Some additional info that might be of interest to this crowd:
He was fantastic at video games (RTS and RPG) and chess. He had impeccable hand-eye coordination. He co-founded a gaming clan. None of that is relevant anymore.
There is nothing to be done. His condition can't be solved (within his timeframe) by medicine or technology. eastdakota offered to spend whatever it took, but the least worst option was to move him across the ocean and turn him into a test subject for tests that he probably wouldn't tolerate in his current state.
He was deliberate in "minimizing toil". His university projects morphed into patents and a job at UnSpam and Project HoneyPot. Project HoneyPot's technology unlocked the core value to CloudFlare, which he cofounded. His projects and stacks were deliberately chosen for maximal reuse and to minimize wasted effort.
I thank Matthew and Michelle for keeping the story of his journey alive. I can't imagine the tech periodicals are knocking down their doors to write stories like these. Connie Loizos had another piece on him at TechCrunch in 2019[1]
In September, after we'd released our S-1 but before Cloudflare's IPO, I took two weeks off and went back to my home town of Park City, Utah. (It's actually where Lee and I had been roommates many years before.) That two week period before you go public is known as the quiet period, so I was generally avoiding social media or answering my phone or doing anything other than resting and getting ready for the pre-IPO road show.
We hadn't talked much publicly about Lee's disease, but Michelle and I had written a bit about it in the S-1 Founders Letter:
"Finally, there are two of us signing this letter today, but three people started Cloudflare. Lee Holloway is our third co-founder and the genius who architected our platform and recruited and led our early technical team. Tragically, Lee stepped down from Cloudflare in 2016, suffering the debilitating effects of Frontotemporal Dementia, a rare neurological disease. As we began the confidential process to go public, one of the early decisions was to pick the code name for our IPO. We chose 'Project Holloway' to honor Lee’s contribution. More importantly, on a daily basis, the technical decisions Lee made, and the engineering team he built, are fundamental to the business we have become."
One evening my phone rang and the called ID came up as "Lee Holloway." I checked the number and it was his. I didn't answer and the caller didn't leave a voicemail. My first reaction was that somehow his phone had been hacked or his number was being spoofed and someone was using it to somehow screw with me. Figured someone had read about his disease in the S-1 and was being a jerk.
I reported the call to Cloudflare's security team to investigate. I also texted Lee's wife to let her know to be on the lookout. She wrote back: "No, that's Lee. Sometimes I think when he's feeling nostalgic he reaches out to old friends. He never says anything, but I think it's his way to let you know he's thinking about you."
So I still shoot him text messages from time to time to let him know I'm thinking about him. And I hope, somewhere inside his mind, there's a part of him that still knows that.
Can I ask you, when Lee’s personality began to change drastically, did he maintain the same level of technical proficiency (in coding or gaming)? It is a wonderful piece on a very sad story, and after reading it that’s one of the things that I’m interested to know more about, to understand the general condition.
> 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?
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.
>> 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?
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.
I posted this hours ago and then stepped away. The story captures so much about the Lee I knew so well. I'll add one piece of praise for Lee's early architecture of Cloudflare.
Everything was controlled by a single Postgres database that made very heavy use of stored procedures, that called other procedures, that called others. It was one giant program inside the database. It took me a while to comprehend what he'd done but it was really great. The database ran everything and all those functions made sure that audit logs were kept, that the calls were allowed for the user ID being passed in, and some of these procedures made external calls to APIs including getting things like SSL certificates.
It was a magnificent monolith inside a database.
I worked on the periphery of the database (it was truly Lee's domain) and he'd tell me what output to expect or API to create and I'd code to his spec. and we'd just hook it up.
If any single artefact represents what he did at Cloudflare, it's that database. And he used to code it on a laptop we called "The Beast" because it was so crazily heavy and overloaded with memory etc. that he'd carry around a mini, test Cloudflare wherever he went.
As a software engineer, shit like this scares me. I've felt like I'm on a steady, slow, decline for the last ~4 years.
Is it just burnout? Do I need a new hobby?
I used to love programming... Spent 12 hours a day jamming on it. Now, I struggle to keep my mind on a line of code for more than 5 minutes.
At what point is it just burnout, or at what point is it something more? That's what's terrifying to me. I imagine that was a challenge for those close to Lee.
We just know so little about the human body. Our ability to easily query the state of the body, to assess which functional components are working, and which need help, is dismal.
I just hope that Lee, in whatever state he is in, isn't suffering.
After reading this I had to do a quick self-assessment.
For the last few years or so (I'm 33, also a software engineer) I've noticed a pretty big decline in my mental state. I can't focus. I immediately forget what I just looked at, read or did. I completely zone out when people talk to me. I am just not present in any situation. What is strange is that I can actually notice it, not in real-time however. It's been worrying me for the last few months so much so that I started meditating which I've never done before. My wife mentioned seeing a therapist because she thought maybe I was depressed so I scheduled an appointment but it's been rescheduled due to the virus.
I keep hearing about other programmers experiencing similar issues (yourself included) and I wonder if the nature of what we do somehow damages our brain in some capacity and we just don't know it yet. Obviously Lee's case is different but it's certainly scary. I hope he doesn't suffer as well.
I bet there are some aspects to this that lots of people could self-identify with.
I have a bad habit of remembering a past that never was. I think, man, the code used to just flow so easily, and now it requires effort. But I'm just remembering the highlights; if I try a little harder, I can start to remember other days when it wasn't so easy. I forget my missed deadlines and remember my last-minute saves. Revisiting old code now and again helps to shake the illusion loose.
Arranging life to spend a little bit less time on things that feel like work and making a little more time for things that excite you is a good medicine for this feeling and probably something everyone should do anyway.
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.
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.
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.
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.
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.
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.
When I was a medical student on my psychiatry rotation we had a patient who was a history professor at a local college. He was actually admitted to the hospital after reporting himself for molesting his neighbor’s children, but this was investigated and turned out to be impossible. Nonetheless, he was convinced he had done it, and was very impulsive and saddened by it (he would tearfully confess over and over). In the end, we imaged his brain and diagnosed him with frontotemporal dementia. The most strangest aspect was that you could look on rateaprofessor.com and see how he gradually changed over the semesters. I remember a comment saying that he came in on day one, told the class they would all get A’s, and left without coming back for weeks.
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.
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.
Lee interviewed me at Cloudflare. At that time he was still quite active and very interested in his work. It was definitely a noticeable decline, but we all just attributed it to burn out.
I think everyone at Cloudflare was heartbroken when Matthew announced his diagnosis. It was hard to take in.
We love you Lee, you are a champ! You've left a legacy and made the world a better place. Thanks for the opportunity you and the team gave me to work at Cloudflare.
An old family friend was a brilliant engineer. He then had a stroke and recovered (early 50s), but within a few months started acting strange. He started making really inappropriate statements, and generally acting weird, started buying commemorative coins and not paying his bills. Then he started talking gibberish and couldn't understand people. His motor functions eventually deteriorated and he passed away a few weeks ago. Absolutely horrifying. By the time we all figured it out, it was a couple of years in.
I'd like to add to discussion [1] which shows relation between stress and autoimmune disease, [2] (Russian) case study of a Russian businessman who burned out (lost a part of cortex due to autoimmunte disease) and [3] encephalitis provoked by emotional stress.
It is also known that stress increases white blood cell count [1] which is essentially a mechanism behind autoimmune manifestations.
Overwork leads to a stress. No wonder useful body cells can be attacked producing a whole range of resulting diseases.
The risk of a heart attack also significantly increases when white blood cell count gets high as their presence fuels inflammatory processes in obstructed blood vessels. Eventually this may lead to a full occlusion which is essentially what heart attack is.
What an ignorant I was.
March last year (2019), I wrote an email to Lee Holloway asking him how he could bootstrap such a great company. Now I know why I haven’t received the answer.
EDIT: I found an email:
Dear Lee Holloway,
Excuse my curiosity, as an Engineer I am not writing this kind of emails a lot, but I have read the blog series by John Graham-Cumming about the company, and it would really help me if you can answer my question about the constant flow of engineering innovations from your company.
I am a security engineer from Europe and would like to know how is it possible, that security team will start producing such a stream of innovative things like Keyless SSL, CFSSL, SIDH implementation, Red October key management server and many more your company already published?
When the "lift and shift" from the open source or vendor stops and internal building start to happen within an organization? Is it a cultural thing where only a small startup can succeed and scale later? Is it about the budget or is it a cultural shift that is non forcible upon them?
Is a prerequisite to the innovation, that almost everything is developed in house? That came to me as a contra productive strategy. I have read Skunk Works and other books, but I am still impressed how that happens regarding to the modern leading IT/infra companies.
I know someone with this disease as well. The saving grace seems to be that he doesn't seem to notice his own ongoing demise. He was fired from work and divorced from his wife before the diagnosis, so obtaining coverage from work has required lawyers and is still unresolved. His care is expensive. It's such a tragic story because this happened in the prime of life, and like the article said the adverse behaviors were initially thought to be a mid-life crisis.
Coming to this late, but wanted to offer my condolences and a friendly ear if anyone reading this is dealing with FTD in a friend or relative.
My dad was diagnosed in his 60’s with FTD and declined for years until he passed away in January. It has been really difficult, and even more so for my mom, as she had to deal with him becoming aggressive in later stages of FTD.
It’s an ugly disease, not well-known, and hits people younger than typical Alzheimer’s symptoms would. I’m so sorry to those who have to go through FTD with relatives. It’s just extremely difficult from all angles. :(
If you are dealing with this, whether with the person in the article or someone else, my contact info is in my profile.
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.
Late Dr. Oliver Sacks in his book "musicophilia" spent a chapter on Frontotemporal Dementia (FTD). That's chapter 28: "irrepressible: music and temporal lobes".
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.”
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.
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.
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.
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.
[+] [-] thephyber|6 years ago|reply
Some additional info that might be of interest to this crowd:
He was fantastic at video games (RTS and RPG) and chess. He had impeccable hand-eye coordination. He co-founded a gaming clan. None of that is relevant anymore.
There is nothing to be done. His condition can't be solved (within his timeframe) by medicine or technology. eastdakota offered to spend whatever it took, but the least worst option was to move him across the ocean and turn him into a test subject for tests that he probably wouldn't tolerate in his current state.
He was deliberate in "minimizing toil". His university projects morphed into patents and a job at UnSpam and Project HoneyPot. Project HoneyPot's technology unlocked the core value to CloudFlare, which he cofounded. His projects and stacks were deliberately chosen for maximal reuse and to minimize wasted effort.
I thank Matthew and Michelle for keeping the story of his journey alive. I can't imagine the tech periodicals are knocking down their doors to write stories like these. Connie Loizos had another piece on him at TechCrunch in 2019[1]
[1] https://techcrunch.com/2019/08/15/cloudflare-has-a-third-cof...
[+] [-] eastdakota|6 years ago|reply
In September, after we'd released our S-1 but before Cloudflare's IPO, I took two weeks off and went back to my home town of Park City, Utah. (It's actually where Lee and I had been roommates many years before.) That two week period before you go public is known as the quiet period, so I was generally avoiding social media or answering my phone or doing anything other than resting and getting ready for the pre-IPO road show.
We hadn't talked much publicly about Lee's disease, but Michelle and I had written a bit about it in the S-1 Founders Letter:
"Finally, there are two of us signing this letter today, but three people started Cloudflare. Lee Holloway is our third co-founder and the genius who architected our platform and recruited and led our early technical team. Tragically, Lee stepped down from Cloudflare in 2016, suffering the debilitating effects of Frontotemporal Dementia, a rare neurological disease. As we began the confidential process to go public, one of the early decisions was to pick the code name for our IPO. We chose 'Project Holloway' to honor Lee’s contribution. More importantly, on a daily basis, the technical decisions Lee made, and the engineering team he built, are fundamental to the business we have become."
One evening my phone rang and the called ID came up as "Lee Holloway." I checked the number and it was his. I didn't answer and the caller didn't leave a voicemail. My first reaction was that somehow his phone had been hacked or his number was being spoofed and someone was using it to somehow screw with me. Figured someone had read about his disease in the S-1 and was being a jerk.
I reported the call to Cloudflare's security team to investigate. I also texted Lee's wife to let her know to be on the lookout. She wrote back: "No, that's Lee. Sometimes I think when he's feeling nostalgic he reaches out to old friends. He never says anything, but I think it's his way to let you know he's thinking about you."
So I still shoot him text messages from time to time to let him know I'm thinking about him. And I hope, somewhere inside his mind, there's a part of him that still knows that.
[+] [-] Tycho|6 years ago|reply
[+] [-] xenihn|6 years ago|reply
[+] [-] billti|6 years ago|reply
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?
[+] [-] wigl|6 years ago|reply
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-...
[+] [-] Retric|6 years ago|reply
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.
[+] [-] notabee|6 years ago|reply
[+] [-] cryptica|6 years ago|reply
That is a strange coincidence. Could changes in bloodflow have an impact on brain cells?
[+] [-] williamscales|6 years ago|reply
[+] [-] kilpikaarna|6 years ago|reply
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.
[+] [-] GCSAQCMIYI|6 years ago|reply
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[+] [-] pyuser583|6 years ago|reply
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.
[+] [-] jgrahamc|6 years ago|reply
Everything was controlled by a single Postgres database that made very heavy use of stored procedures, that called other procedures, that called others. It was one giant program inside the database. It took me a while to comprehend what he'd done but it was really great. The database ran everything and all those functions made sure that audit logs were kept, that the calls were allowed for the user ID being passed in, and some of these procedures made external calls to APIs including getting things like SSL certificates.
It was a magnificent monolith inside a database.
I worked on the periphery of the database (it was truly Lee's domain) and he'd tell me what output to expect or API to create and I'd code to his spec. and we'd just hook it up.
If any single artefact represents what he did at Cloudflare, it's that database. And he used to code it on a laptop we called "The Beast" because it was so crazily heavy and overloaded with memory etc. that he'd carry around a mini, test Cloudflare wherever he went.
[+] [-] rubicon33|6 years ago|reply
As a software engineer, shit like this scares me. I've felt like I'm on a steady, slow, decline for the last ~4 years.
Is it just burnout? Do I need a new hobby?
I used to love programming... Spent 12 hours a day jamming on it. Now, I struggle to keep my mind on a line of code for more than 5 minutes.
At what point is it just burnout, or at what point is it something more? That's what's terrifying to me. I imagine that was a challenge for those close to Lee.
We just know so little about the human body. Our ability to easily query the state of the body, to assess which functional components are working, and which need help, is dismal.
I just hope that Lee, in whatever state he is in, isn't suffering.
[+] [-] dimxasnewfrozen|6 years ago|reply
For the last few years or so (I'm 33, also a software engineer) I've noticed a pretty big decline in my mental state. I can't focus. I immediately forget what I just looked at, read or did. I completely zone out when people talk to me. I am just not present in any situation. What is strange is that I can actually notice it, not in real-time however. It's been worrying me for the last few months so much so that I started meditating which I've never done before. My wife mentioned seeing a therapist because she thought maybe I was depressed so I scheduled an appointment but it's been rescheduled due to the virus.
I keep hearing about other programmers experiencing similar issues (yourself included) and I wonder if the nature of what we do somehow damages our brain in some capacity and we just don't know it yet. Obviously Lee's case is different but it's certainly scary. I hope he doesn't suffer as well.
[+] [-] thaumaturgy|6 years ago|reply
I have a bad habit of remembering a past that never was. I think, man, the code used to just flow so easily, and now it requires effort. But I'm just remembering the highlights; if I try a little harder, I can start to remember other days when it wasn't so easy. I forget my missed deadlines and remember my last-minute saves. Revisiting old code now and again helps to shake the illusion loose.
Arranging life to spend a little bit less time on things that feel like work and making a little more time for things that excite you is a good medicine for this feeling and probably something everyone should do anyway.
[+] [-] kick|6 years ago|reply
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.
[+] [-] eastdakota|6 years ago|reply
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.
[+] [-] thephyber|6 years ago|reply
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.
[+] [-] mensetmanusman|6 years ago|reply
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.
[+] [-] basch|6 years ago|reply
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.
[+] [-] meowface|6 years ago|reply
[+] [-] JamesBarney|6 years ago|reply
Saying this as someone whose mother scored in the top 1% on the SAT and was schizophrenic.
[+] [-] bobblywobbles|6 years ago|reply
[+] [-] phaedrus441|6 years ago|reply
[+] [-] noir_lord|6 years ago|reply
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.
[+] [-] bitwize|6 years ago|reply
[+] [-] dhruvarora013|6 years ago|reply
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.
[+] [-] caust1c|6 years ago|reply
I think everyone at Cloudflare was heartbroken when Matthew announced his diagnosis. It was hard to take in.
We love you Lee, you are a champ! You've left a legacy and made the world a better place. Thanks for the opportunity you and the team gave me to work at Cloudflare.
[+] [-] 7thaccount|6 years ago|reply
[+] [-] thesz|6 years ago|reply
[1] https://www.health.harvard.edu/blog/autoimmune-disease-and-s...
[2] https://www.forbes.ru/karera-i-svoy-biznes/392253-kukushechk...
[3] https://www.shmabstracts.com/abstract/stress-is-the-enemy-a-...
And he was clearly overworked, by my guess.
[+] [-] garganzol|6 years ago|reply
Overwork leads to a stress. No wonder useful body cells can be attacked producing a whole range of resulting diseases.
The risk of a heart attack also significantly increases when white blood cell count gets high as their presence fuels inflammatory processes in obstructed blood vessels. Eventually this may lead to a full occlusion which is essentially what heart attack is.
[1] https://carrington.edu/blog/researchers-discover-link-mental...
[+] [-] viralpoetry|6 years ago|reply
EDIT: I found an email:
Dear Lee Holloway,
Excuse my curiosity, as an Engineer I am not writing this kind of emails a lot, but I have read the blog series by John Graham-Cumming about the company, and it would really help me if you can answer my question about the constant flow of engineering innovations from your company.
I am a security engineer from Europe and would like to know how is it possible, that security team will start producing such a stream of innovative things like Keyless SSL, CFSSL, SIDH implementation, Red October key management server and many more your company already published?
When the "lift and shift" from the open source or vendor stops and internal building start to happen within an organization? Is it a cultural thing where only a small startup can succeed and scale later? Is it about the budget or is it a cultural shift that is non forcible upon them? Is a prerequisite to the innovation, that almost everything is developed in house? That came to me as a contra productive strategy. I have read Skunk Works and other books, but I am still impressed how that happens regarding to the modern leading IT/infra companies.
Thank you for your time,
...
[+] [-] devenson|6 years ago|reply
[+] [-] ericabiz|6 years ago|reply
My dad was diagnosed in his 60’s with FTD and declined for years until he passed away in January. It has been really difficult, and even more so for my mom, as she had to deal with him becoming aggressive in later stages of FTD.
It’s an ugly disease, not well-known, and hits people younger than typical Alzheimer’s symptoms would. I’m so sorry to those who have to go through FTD with relatives. It’s just extremely difficult from all angles. :(
If you are dealing with this, whether with the person in the article or someone else, my contact info is in my profile.
[+] [-] eastdakota|6 years ago|reply
[+] [-] vikramkr|6 years ago|reply
[+] [-] raincom|6 years ago|reply
[+] [-] daenz|6 years ago|reply
[+] [-] eastdakota|6 years ago|reply
[+] [-] thebusby|6 years ago|reply
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.
[+] [-] reuben_scratton|6 years ago|reply
[+] [-] djohnston|6 years ago|reply
[+] [-] ratww|6 years ago|reply
[+] [-] renewiltord|6 years ago|reply
[+] [-] Igelau|6 years ago|reply
> 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.
[+] [-] mh-|6 years ago|reply
Thank you. I watched that movie with my wife 15 years ago, now, and it remains the scariest, saddest movie I've ever seen.
[+] [-] meowface|6 years ago|reply
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.
[+] [-] antonzabirko|6 years ago|reply