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1298 points jgrahamc | 2 comments | | HN request time: 0.407s | source
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billti ◴[] No.22879807[source]
> 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?

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1. kilpikaarna ◴[] No.22890188[source]
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.

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2. billti ◴[] No.22896652[source]
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 :-(