My father-in-law has FTD. I was just a few paragraphs into the article before I started wondering.
Search the NYTimes for "Frontotemporal Dementia", and you'll find several stories, all similar :-(
What Happened to Lee
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Re: What Happened to Lee
#22I 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.
Re: What Happened to Lee
#23Perhaps 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…
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.
Re: What Happened to Lee
#24The question that occurs to me is: if you knew that was in your future, would you spend your last 10 good years toiling at a startup?
Re: What Happened to Lee
#25> 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?
Re: What Happened to Lee
#26So sad and bleak to read. 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 Pa…
A cocktail of neural herbals, exercise, meditation, extra therapy - I hope he got all these early on.
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.
Re: What Happened to Lee
#27Perhaps 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…
Great question. Lots of history on this topic, here is an interesting overview in regards to the Lisbon Earthquake[1]:
Re: What Happened to Lee
#28I 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 s…
You are likely right, this is a fascinating insight.
Re: What Happened to Lee
#29Perhaps 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…
If God exists, they are cruel and uncaring.
Re: What Happened to Lee
#30> 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…
I'm so sorry for your loss.