7 ms·

> 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 i

by billti 7y ago

> 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?

williamscales 7y ago
I'm so sorry for your loss.
cryptica 7y ago
>> 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?
- DFHippie 7y ago
  It might be the anesthetic.
  - Wistar 7y ago
    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.htm https://www.sciencedaily.com/releases/2018/07/180719112024.h...
- billti 7y ago
  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/articles/10.1186/s13741-016-0032-5 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.
  - bawana 7y ago
    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.
- meowface 7y ago
wigl 7y ago
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-and-the-line-between-biology-and-destiny https://www.npr.org/2017/05/12/528097708/the-power-of-genes-...
- fossuser 7y ago
  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.
  - wigl 7y ago
    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.
Retric 7y ago
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-conditions/ 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.
- tcoff91 7y ago
  I don't know if we can count on the ACA staying around forever.
  - Retric 7y ago
    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.
    - Agathos 7y ago
      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.
      - Retric 7y ago
        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.
notabee 7y ago
CSF leaks/hypotension are also potentially implicated in frontotemporal dementia: https://journals.lww.com/neurotodayonline/Fulltext/2002/09000/Hypotension_May_Cause_Frontotemporal_Dementia.13.aspx https://journals.lww.com/neurotodayonline/Fulltext/2002/0900...
pyuser583 7y ago
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.
- jdm2212 7y ago
  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.
- zamfi 7y ago
  > 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. :/
GCSAQCMIYI 7y ago
>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.
- tilolebo 7y ago
  He's looking for health care, actually.
  - GCSAQCMIYI 7y ago
    Yes, and he's looking for it to be financed by other people while giving them nothing in return for it.
    - switchbak 7y ago
      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.
      - GCSAQCMIYI_2 7y ago
        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.
    - creeble 7y ago
      They get the exact same thing, actually. That’s how insurance works (or is supposed to): it spreads the risk among all subscribers.
kilpikaarna 7y ago
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.
- billti 7y ago
  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 :-(

by billti 7y ago

williamscales 7y ago

I'm so sorry for your loss.

cryptica 7y ago

>> 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?

DFHippie 7y ago
It might be the anesthetic.
- Wistar 7y ago
  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.htm https://www.sciencedaily.com/releases/2018/07/180719112024.h...
billti 7y ago
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/articles/10.1186/s13741-016-0032-5 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.
- bawana 7y ago
  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.
meowface 7y ago

wigl 7y ago

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-and-the-line-between-biology-and-destiny https://www.npr.org/2017/05/12/528097708/the-power-of-genes-...

fossuser 7y ago
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.
- wigl 7y ago
  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.

Retric 7y ago

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-conditions/ 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.

tcoff91 7y ago
I don't know if we can count on the ACA staying around forever.
- Retric 7y ago
  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.
  - Agathos 7y ago
    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.
    - Retric 7y ago
      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.

notabee 7y ago

CSF leaks/hypotension are also potentially implicated in frontotemporal dementia: https://journals.lww.com/neurotodayonline/Fulltext/2002/09000/Hypotension_May_Cause_Frontotemporal_Dementia.13.aspx https://journals.lww.com/neurotodayonline/Fulltext/2002/0900...

pyuser583 7y ago

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.

jdm2212 7y ago
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.
zamfi 7y ago
> 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. :/

GCSAQCMIYI 7y ago

>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.

tilolebo 7y ago
He's looking for health care, actually.
- GCSAQCMIYI 7y ago
  Yes, and he's looking for it to be financed by other people while giving them nothing in return for it.
  - switchbak 7y ago
    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.
    - GCSAQCMIYI_2 7y ago
      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.
  - creeble 7y ago
    They get the exact same thing, actually. That’s how insurance works (or is supposed to): it spreads the risk among all subscribers.

kilpikaarna 7y ago

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.

billti 7y ago
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 :-(