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rlpowell13y40

It says: 14.2 out of 100 men of European ethnicity who share Robin Powell's genotype will develop Alzheimer's Disease between the ages of 50 and 79.

Apparently, according to 23andMe, the normal incidence in european men in that age range is 7.2%, so it's "only" twice as likely.

JoshuaZ13y40

In that case, your current age matters a lot. If you are substantially below that age then there's a high likelyhood that before you hit that age range we will have some effective treatments for Alzheimer's (although I think people are generally overly optimistic about a lot of the current treatment suggestions).

4gwern13y

So your 14% is for a range that overlaps with a 19% range... Might want to investigate your risk a little more carefully, eg. what's your total lifetime risk with that info compared with the base-rate lifetime risk for people with your life expectancy?

See in context

19 What deserves cryocide?

by rlpowell

19th Apr 2012

1 min read

19

So being signed up for cryonics shifts my views on life and death, as might be expected.

In particular, it focuses my views of success on the preservation of my brain (everything else too, just in case, but especially the brain). This means, obviously, not just the lump of meat but also the information within it.

If I'm suffering a degenerative disease to that meat or its information, I'm going to want to cryocide to preserve the information (and the idea of living through slow brain death doesn't thrill me regardless).

What I don't know is: given the current state of science, what sorts of things do I need to be worried about?

In particular, I'm wondering about Alzheimer's; does it appear to be damage to the information, or to the retrieval mechanism?

But any other such diseases interest me in this context.

Thanks!

-Robin

Personal Blog

19

Mentioned in

35An exercise in really going through with it

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[-]rlpowell13y190

WRT the actual method of cryocide, "lie down in a tub full of ice water" seems the obvious choice, but has important legal complications, so I'll point people to http://www.alcor.org/magazine/2011/01/14/options-for-brain-threatening-disorders/ , which provides a legal alternative.

[-]Multiheaded13y330

Goddamn! "Dying of thirst to avoid laws on suicide that'll screw with your body" is something our grandchildren might well think to be made up if someone told them; who'd believe our society could really be that insane?

[-]RomeoStevens13y200

it's worse than you think. We routinely torture people behind the veneer of medicine just so that healthy people don't have to feel icky about death.

[-]MixedNuts13y40

Do we? We make people stay alive a long time and in a lot of pain unless they ask really loud not to. Even if you think that's torture, adding morphine solves that. (It does not solve the sacrifice of resources that buy more QALYs.) What are you thinking of?

[-]JenniferRM13y150

I think a lot of times they can't "ask really loud" because they're mentally impaired and sick. Also, it sometimes happens that people have pension benefits that stop or substantially decrease when they die, such that their spouse (who is likely to have legal control over medical decisions) has a giant financial incentive for them to be kept "legally alive" but stored out of sight and mind in a inexpensive facility somewhere. In such cases, if you're being uncharitable by imagining the capacity to calculate on the part of seemingly stupid people, then "feeling icky" is just an emotionally plausible cover for "pursuing money despite the moral horror involved".

Legal bright-lines combined with tragic and unforeseen circumstances can produce kind of bizarre and horrible outcomes that no one has much incentive to talk about when they personally find out about them. Since they aren't much discussed, they don't enter into people's calculations very much... which helps them remain "unforeseen" for many people (and thus potentially increases the tragedy, due to lack of advance planning). Its like an ugh field, except functioning at the interpersonal level where epistemic hygiene starts to be relevant, rather than being a matter of confused stuff going on in a single person's head.

[-]rlpowell13y100

If you think that morphine solves that, you have had the very good fortune to never experience severe pain. I've watched my father bellow in pain for hours while he was on several times the maximum recommended dose of every pain medication a hospital could provide.

We are very bad at controlling severe pain; any belief to the contrary is simply mythology believed by people who have never been there (I have as well, and I can assure you this is true).

My father was in severe pain, every day, for the last decade or so of his life. It happens to be the case that he wouldn't have chosen suicide were it offered, but what if he had wanted to choose that? WTF is wrong with our culture that a person in such a situation cannot get help? He certainly couldn't handle it himself; he could barely walk, and many days couldn't function at all. RomeoStevens is quite correct here.

[-]NancyLebovitz13y30

I've seen claims that doctors know how to control pain, and no evidence that it's true in general. (One of my friends has severe neuropathy from no known cause, and heavy duty meds, electrical stimulation, and I forgot what other medical methods have been tried leave her barely able to walk.)

I would like to have a method of recognizing it when someone makes a comforting generalization ("it will get done soon" is a small scale example) to check for evidence. There's a temptation to accept the comfort too fast.

Another angle on doctors and pain control is that you don't always know where to find competent help. A friend who had a major cancer and was picky about being able to think clearly didn't get decent pain control until he was in a hospice.

Some people find that having access to suicide makes a hard life easier to endure.

[-]NancyLebovitz13y70

Because of fears about addiction and odd cultural beliefs about the value of pain, the morphine isn't always available.

[-]David_Gerard13y30

Yes. In the UK and US, medical authorities treat opiates as inherently evil and give doctors prescribing them a hard time. (This is worse since Harold Shipman.)

[-]juliawise13y20

Hmm, I'd heard that dying of dehydration was not a bad way to go, but now I read that's not true. There goes my hospice plan.

[-]NancyLebovitz13y20

That source should probably also be checked.

The claim I'd heard was that people who are close to dying can't feel that they're thirsty, but now that I think about it, that could easily be one of those comforting generalizations.

[-]juliawise13y00

This indicates the process may not be so bad if you're old and sick already.

[-]NancyLebovitz13y90

I don't know how weird this is, but I care more about the continuation of my temperament than (most of?) my particular memories.

[-]JenniferRM13y60

I've never heard someone say this before and would be interested to hear more :-)

[-]NancyLebovitz13y130

Part of it is that my memories aren't particularly vivid. There wouldn't be any point in building a sense of self around them.

On the other hand, some things like the sense of what I'm hunting when I do calligraphy are quite clear and stable (I guess I think my memory is good enough to make that sort of generalization) and important to me. It would be a huge loss to me if that were gone, especially if it weren't replaced by something at least as good.

Also, I love watching waves come in, and if it had to be a choice I'd rather be the sort of person who loves watching waves come in than have particular memories of the experience.

There have been.changes in my temperament over the years, but not enough for me to feel as though any of them were a death. I did have the weird experience of taking d-phenylalanine some years ago, and while it improved my mood and energy, I didn't feel like me, didn't like that, and didn't continue.

On the other hand, when I tried lexapro, I felt good, had better mood and energy, but found I was getting into head-banging arguments. That last is something I think is bad enough that I didn't continue with the drug.

On the other hand, When I say my memories aren't vivid, I'm talking about sensory memories of events in my life-- emotions and moments of kinesthesia are more likely to be remembered, and I've got a fairly good memory for facts, my internal monologue, and science fiction, perhaps especially the science fiction I read before the 80s (when there was little enough available (not to mention that I didn't get online till the 90s)) that I was doing a lot of rereading.

I found out that wellbrutrin (just a few small doses) knocked out my long term memory for months, and I cared more about my memory for golden age (pre 1960, more or less) sf than I realized.

And now we get to why reading some Less Wrong might have made sense even when I was at Esalen. I was thinking about your question, and it hit me that I have some pain associated with accessing memories of events in my life, even if the event wasn't painful. (I'm not sure I would have been sensitive enough to have noticed this if I hadn't been doing a lot of qi gong, getting good massage, and generally being in a good environment.)

This could have something to do both with why my memories aren't that vivid and why I don't build my sense of self around them.

Since that realization about pain and memory, my sensory memories have become a lot less accessible-- in fact, sometimes I can access a memory once, and then it fades out. This strikes me as seriously weird.

I'm hoping that I can find some way to eliminate the association between pain and sensory memories-- therapy is on the agenda. My guess is that they will become more accessible and vivid.

[-]rlpowell13y00

FWIW, I have a lot of what you've described in terms of non-vivid sensory memories; the primary difference is that my factual memories ("I once did X", without sensory context) are very important to me, and I don't have the pain response.

Having said all of that, it may help you to know that my access to childhood memories has improved significantly after therapy, and this was not a therapy goal at all. If you are in the SF bay area, I would be ecstatic to recommend my therapist: http://mylesdownes.com/ (site looks much more newage then he ever behaved with me).

[-]NancyLebovitz13y00

I live in Philadelphia, and it doesn't seem likely that Myles Downes does phone sessions. It doesn't surprise me a bit that your access to childhood memories has improved.

[-]A1987dM13y10

Huh. My temperament is quite different than it was a few years ago, but I wouldn't consider my 2009 self to be dead.

[-]MichaelVassar13y20

Mine is very different too, most of the time, and definitely not dead, but I've never understood why people care distinctly about death rather than just doing the obvious integration of utilities. (understood evolutionary reasons, just not philosophical ones). Gone.

[-]BlazeOrangeDeer13y00

I would tend to agree, maybe because I don't have much of value in my rear view mirror at this point (I'm still young, and yes there are exceptions to this). Basically as long as I remembered my best friend I wouldn't have any particularly strong attachments to the rest of my memories of events, though it would be an inconvenience to lose them. My general knowledge is fairly important to me, though.

[-]rlpowell13y90

As a side comment, part of the reason I asked is that 23andMe says my chance of Alzheimer's is 14+%. So it's something I really need to factor into my plans.

-Robin

[-]gwern13y60

What age is that 14+% for? Looking at Wikipedia I see http://en.wikipedia.org/wiki/Alzheimer%27s#Epidemiology

In the United States, Alzheimer prevalence was estimated to be 1.6% in 2000 both overall and in the 65–74 age group, with the rate increasing to 19% in the 75–84 group and to 42% in the greater than 84 group.

So depending on what age that is for, 14% might actually be great news...

[-]rlpowell13y40

It says: 14.2 out of 100 men of European ethnicity who share Robin Powell's genotype will develop Alzheimer's Disease between the ages of 50 and 79.

Apparently, according to 23andMe, the normal incidence in european men in that age range is 7.2%, so it's "only" twice as likely.

[-]JoshuaZ13y40

[-]rlpowell13y10

I'm 35, and I'm worst-casing this, and as I said Alzheimer's is, I presume, only one such thing to be worried about.

[-]gwern13y40

[-]rlpowell13y80

I'm noticing that no-one has actually tried to answer half of the question: besides Alzheimer's, what sorts of degenerative brain awfulness is out there?

[-]JenniferRM13y40

Sorry to neglect your question. I intended to write something initially and then didn't get around to it. I can think of two brain diseases off the top of my head that spare various brain structures that might be thought to implement and store "the self". This suggests that you at least need to do a case by case analysis?

A probably self-sparing disease is Encephalitis_lethargica which causes (or caused?) physical catatonia (probably by damaging some components of the brain that use or produce dopamine) while seeming to spare other things for long periods of time, such that they can be temporarily "mentally recovered" by the administration of L-DOPA even decades after the onset of catatonia. This was done experimentally in the 1960's and is reasonably accurately documented in vivid form by "Awakenings", a doctor's memoir turned into a Williams/DeNiro film). The symptoms are similar to Parkinson's which, from what I understand, can also sometimes be temporarily treated to "bring the person back for a while" using things like stem cell treatments.

The second thing I can think of that potentially "spares the person's soul" is amyotrophic lateral sclerosis. This is what Hal Finney and Stephen Hawking. Hal Finney has been signed up with Alcor for decades and announced being diagnosed with the disease here on LW in 2009, in his essay Dying Outside.

In contrast, trying to think of a disease off the top of my head that probably doesn't spare the soul, I would expect CJD to take out everything. My understanding is that it basically involved exponentially progressing conversion of "nearly all brain matter" into misfolded protein that catalyzes misfolding of protein that catalyzes misfolding of protein...

Maybe with nanotechnology something could be recovered from what's left after CJD? But my rough impression is that brain tissue is being thermodynamically scrambled. Its probably a matter of degree but at some point you might be "making up" what the brain was like, rather than "measuring" it... and my poorly informed shoot-from-the-hip guess is that CJD leaves behind stuff where you'd be making things up more than measuring them.

About 3 minutes of googling and clicking around trying to find lists of diseases to check into produced Wikipedia's relevant category and a document with one paragraph per disease but no simple list that could be ordered by importance and checked one at a time. Such lists might be fodder for an article if someone were feeling enterprising?

[-]rlpowell13y40

That's great stuff; thank you.

I think you're right that case-by-case analysis is almost certainly necessary, which I suppose isn't surprising once I think about it.

Also, prion diseases are creepy. -_-

[-]RobertLumley13y80

See also this thread, which basically asks the same question.

[-]rlpowell13y00

Thanks, good stuff, that's how I found the alcor article I link below.

[-]MixedNuts13y50

While I feel for you, I would like you not to do something that cause cryonics to be banned.

What Alzheimer's does seems to be unknown, but at least it the late stages it seems implausible that it wouldn't destroy information, it shrinks the support too much.

The stage at which you have to maybe-die seems less determined by how much of your personality has been destroyed by the disease, and more by how much people stop deeming you competent for choosing it. Moderate dementia doesn't seem to be anywhere near enough to kill you but can definitely be used against your choice to e.g. starve.

[-]rlpowell13y70

I will keep the whole "don't get it banned for other people" thing in mind should this ever actually come up, but as I can't predict ultimate outcomes I can't make any promises.

Choosing not to eat or drink doesn't seem likely to provoke that response, especially if I only explain it as "I don't want to live through [whatever]".

I would make such a choice long before I was considered legally incompetent; the Russian roulette of "any day a fond memory could disappear" is to horrible for me; unlike other people in this thread, I consider my memories a central part of who I am.

[-]GLaDOS13y90

the Russian roulette of "any day a fond memory could disappear" is to horrible for me

You do realize this is true to a surprisingly large degree even for perfectly healthy human brains right?

[-]TheOtherDave13y20

I'm pretty sure I used to know that.

[-]rlpowell13y00

Of course, but I can help preserve the memories I choose by remembering them, reinforcing the connections. I dunno about Alzheimer's, but with, say, CJD, anything could disappear at any time, reinforced or not. It's not the same, to me.

-Robin

[-]gwern13y50

Have you been reading Mike Darwin's posts on Chronopause.com? I know it's a huge corpus, but if you read it, you'd either have answered your questions or be in a position to ask much better questions.

[-]rlpowell13y00

That is, indeed, huge. With two babies and a full time job and some moonlighting, I don't think it's feasible for me to read it, but I appreciate the link none the less.

[-][anonymous]13y20

I think it's likely that Alzheimers does irreparable information damage. If I'm diagnosed, suicide would certainly be my choice before it begins to severely impair my cognition. There are ways to kill yourself that resemble natural death and leave only minimal evidence of any kind (I am thinking specifically of nitrogen asphyxiation). You'd need co-conspirators and some careful timing, but I think it might be achievable.

That said, I do think there's a huge demand for a cryonics organization that gets rid of ridiculous, barbaric things like death by dehydration as a legal route to suicide. Perhaps something in international waters, or a nation more friendly to medical suicide?

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