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Having Alzheimer’s at 38 (2015) (macleans.ca)
337 points by onuralp 43 days ago | hide | past | web | favorite | 139 comments



My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's.

It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues).

Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been there for most of the latter case (her mother is now 60).

Watching someone you love deteriorate before your eyes and become a different person week by week is one of the most harrowing experiences one can go through.

"You pick up the phone, you talk to your mom, you don’t have to say anything. It’s a mom". My wife had to go through discovering motherhood without that and she still can't adjust to the fact that her mother is not the same person anymore, it's a constant heartbreak.

I'm just glad there's a simple test for this and that both my wife and her one brother tested negative. So I'll never have to go through what Robin did but that possibly was something I had to contemplate for a while and just the thought of it (and those 2 months waiting for the test results) almost broke me


Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring that's all that I frequently suggest.


I think the issue you are probably running into is a lot more nuanced then you are portraying it to be. Whether you are religious or scientific or some mix of both, creating offspring is a pretty fundamental instinct that is very deeply ingrained into humans. Logic might say "If you have a genetic abnormality you should stop procreating for the greater good of society/your potential offspring/yourself". But we aren't wired to think that way. We think of procreating. The percentage of people who want absolutely zero offspring at any point in their entire life is really tiny. People want children and will put themselves into great levels of harm to have them. You can't really fight that. Children make us happy.

The reason people tend to think of eugenics and concentration camps and such is because they don't know where your slippery slope leads to. If someone with huntington's disease should not have children for the greater good, what about people with a family history of cancer, or a family history of heart disease. We find people with a tendency towards weight gain less desirable, should those people also not have children? What about people with baldness? It seems absurd but maybe they also aren't all that desirable. Where is the line where we say "You are desirable enough to have children"? And if we draw a line, do we need to enforce it? I mean people with huntington's disease certainly cost society a lot without bringing as much benefit. Should we force people like that not to have kids? Where do we lay that line in the sand and say "this is for the greater good!"

To me, I entirely understand why people give you scorn for your opinion. It is a slippery slope and it goes against a fundamental human instinct that brings joy and happiness regardless of the overall cost, pain, and suffering.


I think it's really dangerous to talk about we're wired to this or that. It does two things:

- give the thing an odd, unearned, protection status: lots of things people are wired to are frankly pretty terrible and we could do without them (hierarchical dominance dynamics);

- it's very hard to prove that we're actually wired to something vs it being cultural. Given that we can't even prove this, the above is extra strange: we might be giving special statuses to unnaturally developed processes, and the status quo.

Procreation is not special because people want it. It's special because of its effects on populations and politics. But that's neither here nor there in terms of whether or it makes sense for a given group of people to procreate. That question shouldn't be closed.

> Where is the line where we say "You are desirable enough to have children"?

If there is a process out there that already exists, and you find yourself really not wanting to make a decision that is relevant to the continuation of that process, here's a little secret: the decision nonetheless will be made, and always has been made, just not by you.

So there's no slippery slope here, because the selection process is already in place, we're just washing our hands of it, so it looks like an easy decision because it's not our fault when a child with a horrible disease is born. It similarly not our fault when some people are unable to develop relationships.

But it is real, it is true, and it happens. And we could make a difference.

This is the eternal question of whether humans are ready to actually take responsibility for the process of the world or if they want to continue let it flow freely hoping it works out...


You make a good point, although I have a reservation about you somehow knowing "we could do without" some wired instincts that at first glance seem destructive. It's hard to verify whether or not society would do better if people weren't wired that way, so it seems quite spurious to assume that that would be the case. If you do it from a purely ideological standpoint I can certainly see that, but then you have to recognise it's not a given: It's simply something that you wish was true.


Being wired to think that way doesn't make it right under any light whatsoever; and I never say anything about enforcing anything; that's where the slippery slope starts by you and everyone else who thinks the same, where people pretend you are talking about enforcing, but you are just bringing the _option_ of not having children as a valid way to end the suffering, because even talking about such option brings all the hatred when it should be seen as a logical way to avoid suffering without stepping on the rights of anyone to reproduce.


Sorry I might not have made it clear, I just understand the reason why people scorn you for your opinion. I think your opinion is at least somewhat valid and has merit. At the very least I think that it is worth debating and shouldn’t be met with scorn.

As a few have pointed out the slippery slope argument is a bad one. They are right. The slippery slope could be a logical fallacy. But logical fallacies often lead to scorning and anger and fights and such.


Your approach might reduce the rates of these genetic illnesses, but it would not eradicate them, as most commmon genetic illnesses have a non-negligible rate of spontaneous occurrence.


Do we know if latent precursors combine, or is it really spontaneous/random?


Great question! I would wager that both occur.

Each disease will have slightly different genetics, but Huntington's disease provides a good example. There, we know that some individuals have a predisposition to developing the disease - this bias results from having over a certain threshold of repeating DNA bases in the Huntingtin gene.

Here's an accessible discussion of Huntington's and similar diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175376/ .


The slippery slope argument is nonsense. By that logic taxes is a slippery slope to communism. Employment a slippery slope to prostitution :)

We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.


> We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.

Where does it end? My Aunt had cancer. My father high blood pressure. I think one uncle on my estranged mothers family was quite mad.

Am I allowed to procreate? Who draws the line on what is an acceptable level of hereditary risk factors?


>We should encourage people with rare genetic diseases

That is the line. It ends there.


I agree that the slippery slope could be a logical fallacy. It really just describes why the parent post gets scorn when he brings up his idea. Lots of people believe logical fallacies and get upset because of those fallacies. Heck, look at the current US presidential administration.

By the way, there are a ton of people who actually do believe that taxes are a slippery slope to socialism! The employment one is funny. But I think there are people who believe consumerism or capitalism is a slippery slope to criminal activity like prostitution. People are so funny.


One day soon, we'll probably be able to generate a hundred embryos, sequence their genomes, and just implant the ones that lack detectable genetic and chromosomal diseases. Same outcome, but without the ethical hurdles inhetent in choosing who gets to reproduce.

Embryo selection will still be hugely controversial, of course, but we have to overcome any reflex to ban the technique. Human genetic engineering is a technology that will profoundly reduce human suffering, and every year we delay it is pure misery.


I was under the impression that this was already being done?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306852/


Cool. We live in the future.

Unfortunately, based on some quick reading, the technique is regulated in many areas and used only in cases where some specific genetic disease is suspected. This artificial limitation is a disgrace.


Creating hundreds of human beings and then discarding them is the actual disgrace.


Embryos at the stage before you implant them into a womb are not human beings.


Yeah, well, you know, that's just like, uh, your opinion, man.


Do you think it is a disgrace to scrape your hand on some pavement? To take a poop? In both of those cases you lose a ton of cells, but I do not think it's reasonable to assume that they are some great loss. They are cells.


Isn't that currently just a matter of legality and cost? You can already test for trisomy syndromes by sequencing a bit of the mother's blood around week 10 and isolating the embryo's chromosomes statistically - that probably takes a very fault tolerant kind of sequencing, but throw in an order of magnitude more money or a couple more years of cost reductions and you're there.


Right, but at ten weeks, all you can do is abort, which means it's only practical to screen for a few different genetic flaws this way, particularly if you expect some of them to be bad Mendelian inheritance and not some kind of rare structural flaw. Suppose you want to screen out four recessive traits and each one is inherited with probability 1/4, the probability of rolling a good combination is (3/4)^4 = ~30%. If you want to screen out ten such genes, the probability of a good combination drops to ~5%. With embryo selection, you can perform all the trials in parallel instead of sequentially at ten weeks per trial.


You're still flushing all the other embryos down the drain. It doesn't seem as awful as lots of other shit that happens every day, but it's certainly sketchy enough that I wouldn't do it. Humans are not livestock.


Can you define what’s the moral difference against trisomy prescreeners? Or are you against these too? Honest question btw.


I'm not 100% comfortable with the trisomy thing, but I understand why people do it. The "moral difference" is primarily one of scale. Choosing to abort or not, in one particular case, is a human decision. That's even true of abortions motivated by "less moral" factors like economics or convenience. Those are still human decisions.

Deliberately aborting 99 out of 100 or 999 out of 1000 or whatever, that's not how humans interact with each other. That's the sort of decision-making I reserve for cattle or other livestock. (Although we wouldn't make much money if we were so Procrustean in our evaluation...) In that sphere, it's considered immoral by lots of perfectly sane people.

I'm not saying that this practice will never be normalized and accepted by most people. I am saying that if researchers try a little harder and develop methods with the same results but less abortion, the world will be a better place.


Good point about scale. Tbh. I doubt that more than an 1/10 ratio is going to be feasible due to limits given from female biology. If people start doing that, something like CRISPR will soon be employed to fix such issues directly - if the west doesn’t allow it, people will simply travel to a country that will. For families with severe disorders, the cost of doing so will be much lower than to just take the chances with nature, so I think there’s going to be sort of a price balance for each illness. The main risk IMO is a Gattaca-style dystopia.


Not all sunshine & roses. Here's a dark factoid for you- my memory is a bit fuzzy on when you chose mother's blood vs amniotic fluid sample for the test, but at the time I learned about all this, the odds of taking the amniotic fluid sample causing spontaneous abortion, were higher than the odds of the fetus having the more common trisomy conditions. For any particular fetus, the test was more risky than the disease.


That depends on how you weigh a spontaneous abortion against having a child that will never be independent.


It doesn't follow that the test is useless: you're still minimizing the number of people with genetic abnormalities, even if you're causing some spontaneous abortions along the way.


Yes, I don't claim the test is useless. But it was an unexpected moral quandary, as my spouse and I are not strict believers in either pro-choice or pro-life.


The test I’m referring to only uses blood from the mother, thus it should be risk free.


As others have said, HD is usually not diagnosed until well after you have children. Also, some people can be carriers without actually exhibiting symptoms. It goes like this:

1 - There's a particular sequence of bases that are repeated a certain number of times on a certain chromosome 2 - Below 25 repeats: normal, no HD 3 - 25~35 repeats: no HD but there's a risk of spontaneous increase when generating sperm/ovules 4 - 35+ you have HD with more repeats meaning earlier onset and faster progression

My wife's mother has 40 repeats so she's on the milder side of the spectrum(age of onset ~50 and progression is steady but somewhat slow compared to her brother who started at 38)

Individuals in the 25~35 repeats bracket can have children with HD(especially fathers since it seems that there's a higher incidence of increase for them, for some reason)

In our case, my wife tested for this specifically once we seriously started considering the possibility of marriage and children. I'd decided I'd marry her regardless of the outcome but children were a different question altogether, so in that way I do agree with you, but it's definitely not a solution to the problem in the broad case of HD, but in individual cases where it is known to run in the family some people may choose to not have children if they are diagnosed at an early enough age.

That being said, most people would prefer not to know if they have it when a parent is diagnosed, only ~5% of people at risk actually test for it with the vast majority preferring to live in denial. Humans are weird like that, but having seen firsthand what this did to my wife and her family when her mother was diagnosed I don't think I can really blame someone for not wanting to know. You can't make judgements about something like that until you've been in their shoes


Huntington's normally first appears in a family when the carrier is late in life, so it's really not that simple. Not uncommon to already have grandkids before you know. The average age of onset reduces as the generations go on.

And FWIW it has a spontaneous occurrence rate, so even if all known carriers have no offspring it wouldn't eradicate it.


> first appears when a carrier is late in life

Not disagreeing with you I don’t think, I’d call it disease appearance to happen at middle age at best. Plenty have visible symptoms in their 20s though usually it’s in their 30s and 40s. Death is usually sometime around 20 years after onset of symptoms, though earlier onset often means earlier death. This is apart from the suicide risk, which is markedly increased. It’s about as awful a disease as one can have.


"people voluntarily using birth control..."

You do understand that some folks have few options for this, right? I have never wanted children. I'm female. I cannot take hormonal birth control. I would have been sterilized early in life, but most doctors won't do it to young folks. I'm nearly 40 now. Surgical sterilization is more of an option, but is still rather expensive. Additionally, it doesn't always prevent pregnancy and the option that would - a hysterectomy - isn't a healthy thing to do to an otherwise healthy person.

Condoms have their own downsides. Some of the lubricants make me itch. Plus the risk of breaking and all of that stuff. Sure, it is my option, but it sucks. Not to mention that they change the way sex feels for me, let alone the man. Luckily, my spouse is more than willing to be sterilized.

Even with various birth control methods, folks still become pregnant.

Abortion isn't always an option for folks - especially with states and entire countries restricting abortion for any reason. I'm not sure if doctors would test for these genes pre-birth either like they do for a few disorders, and the test itself has has some risks to the fetus.

I can only imagine the hell someone would go through that wants to have children, yet are simply too afraid of passed on some gene that might not be passed on - let alone that they might not even know it runs in the family. I'm not sure they'd be able to avoid having children simply by a combination of accident and happenstance. I've been lucky enough to avoid it, but many others have not and had few realistic options once it happened.


For most of human history, surviving childhood was 50/50. Growing old enough to see your kids start having kids of their own was also rare. When you have a short life span, later in life things aren't selected against. But never in our history have we had the tools and the knowledge that we have now. We will continue to understand and stop these diseases.


There is a lot of diseases that can't be cured and will not be cured; just like you can't separate two twins conjoined by the head there are many other things that can't be reversed; pretending every disease can be cured or will be cured is irrational and irresponsible, at least not with technology from this millennium.


Dude this is the third millennium, not the second.


We can 3d print ultrasounds now [1], so really the issue is how wide spread we can deploy the tech and what the mother wants. But in time we'll understand how conjoining happens and maybe prevent this example.

In 1918 doctors didn't know what a virus really was. It could just hijack a cell to reproduce. Measles were a much more real threat, so they focused on that. 18 months later between 3 and 6% of the world's population was dead.

The 21st century will see things we dream of. We can modify t-cells with crispr to attack childhood cancer. There's a HIV vaccine that was successful in human trials [2]. Have a little more hope.

[1] https://www.ge.com/reports/brazilian-doctor-3d-printing-baby... [2] https://www.bbc.com/news/health-44738642


The classical solution of preventing individuals reproducing doesn't have to the the only solution. Prevent by natural reproductive methods perhaps, but at some point, we're going to be able to genetically screen individual sperm and eggs. Though the latter will be a lot more difficult with the limited supply. The visceral opposition will be there, but the philosophical issue is partially sidestepped.

There is clearly a hierarchy of problem genes which will mean that the philosophical issue is not eliminated. Debilitating diseases is obviously something people are not opposed to eliminating. Eliminating the more subtle personality "defects" though will prove a lot more problematic where we start going into issues of homogenisation in a population.


Eugenics has two side - discouraging certain people to have fewer (or no) children and encouraging others to have more. We seem to be obsessed with the fewer side and don’t look much at the more side.

The most powerful eugenics force in history is the modern education system. It is extremely effective in identifying those with high levels of abstract reasoning and strongly discouraging them from having children. Gets very little attention outside of documentaries masquerading as comedies.


In East Germany university students were encouraged to have children in an attempt to do just that.


Immunotherapy could help here. Just declaring that those testing positive for Huntington should never have kids is a form of moral nihilism and skips over the moral conversation heading straight for the governance “solution”. There are plenty of times I’m glad for rights based constitutions and keeping “solutions” like this out of government is one of them.


Allow me to introduce you to CRISPR/Cas9

https://www.nature.com/news/crispr-fixes-disease-gene-in-via...


https://en.wikipedia.org/wiki/Woody_Guthrie

> Guthrie was married three times and fathered eight children

However, Huntington's also robs you of your impulse control, so simply resolving to never have children if you carry (or suspect you carry) the Huntingtin allele may not be enough:

https://www.ncbi.nlm.nih.gov/pubmed/28339399


And it would be very hard to argue that it would be better for Woody Guthrie -- or his children, or grandchildren -- not to have existed. Besides being one of the most influential musicians of the 20th century, two of his children and four of his grandchildren (and so far one of his great-grandchildren) are notable musicians in their own right.


Two thoughts: 1. It's likely that IVF will soon allow people to screen for conditions like Huntington's prior to implantation. 2. Your suggestion makes it sound like a life lived with Huntington's isn't worth living. If you had the choice, would you choose never having been born over 40 healthy years? Only 100 years ago, this was longer than the average lifespan.


Forcing people to do things because they were diagnosed will only make people avoid being diagnosed.


embryo gene editing or sperm/egg screening could work too.


>Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to

Perhaps because not having existed can be equally as tragic as having existing but having a disease?

Lots of people are living today who were born blind, or with this or that genetic tendency. And they live their lives as best as they can.

Is the argument that these people better they weren't born at all?


Doesn't that same argument (about not having existed at all) apply to all forms of birth control, including abstinence? Almost every time a woman menstruates the 'tragedy' of someone not existing has potentially occurred. To call this a tragedy at all seems absurd to me, and no, it is nowhere near equally tragic as living with many hereditary diseases.

I think there are arguments to be made that not every hint of imperfection should be eliminated (who gets to decide what imperfection means?), but your argument isn't one of those.

If I had never existed (for any reason) nobody would be able to miss me, least of all me. My parents would have tried again a month later and gotten someone else. Perhaps someone better, we'll never know.


>Is the argument that these people better they weren't born at all?

This statement is true for all people.


According to whom? Not to the persons themselves if you ask them.

Some will agree to that, most wont. So hardly "true to all people" except if qualified ("according to my philosophy of life and not their actual sentiments on the matter").


Your solution might be worth discussing if the genetic mutation leads to a birth defect. But for later onset (like >35 years in this case), we'll be in 2050s. Even with a pessimistic view of things, we might find a cure for many/most of the diseases that affect us today. Honestly, I can't even imagine what the 2050s are going to look like.

The problem with the suggestion (or that conversation) is that it creates guilt in people carrying that disease for no fault of theirs. No I am not religious.


Ill do you one better mandatory genetic testing as a kid illegal to pass on the disease. Penalty is a permanent tax of up to 10% of your income for life.

No more disease in one generation.


There are a lot of obvious upsides to this, but the downsides are pretty dire.

There are very few human beings (if any) that don't have something lurking in their genetic history. An elevated risk factor for this or that.

It's potentially a great way to suppress particular groups of people since there are a lot of heritable diseases that are typically only carried by certain ethnic groups i.e. African Americans and sickle cell anemia.

Also where do you draw the line? Outlaw people from procreating if there's a 100% chance of inheritance? 50%? 1%?

What about nonfatal, inheritable stuff like obesity or blindness? Or fallen arches?

Even the "easy" case (a 100% inheritable, 100% fatal disease) is maybe more complicated than we want to think. What is "fatal?" Fatal in < 1 year? Fatal before adulthood? Fatal in one's 20s? What about a disease that is "fatal" in the sense that it just subtracts 5, 10, or 20 years from one's expected lifespan?

     Penalty is a permanent tax of up to 10% of your income for life.
Even this is problematic. What about very poor people without any money to tax, or what about very rich people who simply don't care and/or have so many tax loopholes that they pay no taxes despite living comfortably?


If you have no money to tax or so little you can barely survive you would be immune if you have so much its not painful enough let it scale up and allow no deductions.

Limit the ruling to conditions which can effectively be prevented with genetic testing which substantially burden society, and which society is willing to gratis help you prevent.

If its a 1% chance of transmission you have a 1% chance of a burdensome tax if its a 100% chance you have a 100% chance no need for us to worry personally about the chance of transmission.

Its not really a slippery slope as nobody is being denied the right to procreate it's just that if they know they have a genetic burden and choose to pass it on anyway they will have to help shoulder some of the financial load they put upon society.

It makes perfect sense to help people for free figure out what skeletons they have in their genetic closet. We all have some but some have a 1 in 100,000 chance of being born blind and some have a 50 50 chance of a painful ugly expensive death and should probably adopt.


How many genetic diseases are there and what percentage of people have them.


This is a very good question and puts the situation well into a perspective.

My cut feeling is that if we count every genetic disease then two digits are necessary to express this number.


The overshadowing argument against this, is the "slippery slope" argument. Today you can reliably screen for Downs, and most of the developed world do. Tomorrow it might be for Huntingtons (btw, we're making progress on testing a fetus for all kinds of genetic markers with a simple blood sample from the mother). But when will we stop? Predisposed for depression? Anger issues? Dwarfism?

I agree that for simple things such as Downs and Huntingtons it's fine. I'd prefer to know as a parent, but we need to have a deep and reflective discussion about the ethics and agree on the guiding principle for the future.


It's not tomorrow, some people already screen for dwarfism or deafness to give them to their child.

https://www.nytimes.com/2006/12/05/health/05essa.html


Sorry you had to go through that. It really sucks. My mom died from hd, and I have it too.


My Mother started experiencing dementia at 57 and it has been difficult to see such a brilliant, adventurous worldly woman change. She is still the person whom she was but now she is a creature of habit and does the same thing and the same time everyday of the week. Leaving her neighborhood and visiting new places including restaurants and parks makes her uncomfortable. She used to love traveling to places like Kenya, Portugal and Indonesia but now she just wants to stay local. She was quite a sculptor too but gave that up to raise five children and now that all of us are out of the house she doesn’t have the capacity to peruse her old passion any longer. Moreover our conversations have progressively become shorter and shorter over the years and lost a lot of depth. As her son it’s very difficult to deal with. Moreover I’m in constant fear I will be afflicted too as my grandmother had Alzheimer’s as well. Maybe AI or some other tool will be utilized to develop medications and treatments to halt and reverse the disease in the future, fingers crossed.


Research is making really big step, we all hope for a cure of this and other plague that are ruining our lives.

I often ask myself if the nature of the disease itself make it even worse: AIDS was the worst in its age, people went in streets asking for a cure, now we made huge steps, the same it's happening with cancer, but Alz make everything different: the sick can't make his voice heard, he has no knowledge of what's happening, family, with an enormous economic sacrifice, try to take care of the sick, and their voices become silent.

I'm seeing this for the second time in my family and I can say that I can fully understand who rely in special clinics - Switzerland is famous for this - to stop their life once the disease make them not self-sufficient. A nice view of this situation is given by "Terry Pratchett: Choosing to Die".


Very little is spent on Alzheimer’s research compared to other diseases:

https://www.aarp.org/health/brain-health/info-2015/alzheimer...

I suppose if we made more of an effort now, we’d make considerable progress in 10-20 years.


Maybe a sign of positive change? I have noticed Alzheimers disease lately getting more attention from the US legislative body, via C-SPAN:

From March 23, 2018: https://www.c-span.org/video/?442595-4/washington-journal-dr...

From June 19, 2018: https://www.c-span.org/video/?447278-1/marcia-gay-harden-tes...


Absolutely; I don't know what type of effort we could do though. I think that sharing stats like these [0] can help. "Scaring" people with numbers can be a path.

[0] https://www.alz.org/alzheimers-dementia/facts-figures


Hmm, a while ago I was looking into medical research nonprofits accepting donations and one of them I gave to was Alzheimer's Association. No family history here, was just feeling altruistic about helping out for various causes. Seeing your comment makes me feel good that this is one of the ones I chose.

https://alz.org if anyone else is so inclined.


Goddammit. I am going to cry.

This was a wonderful piece. Empathy in every detail, while still being open enough to satisfy a reader's curiosity. It read like a book and I accidentally began to feel a kinship with the characters.


Yup me too.

Both my grandfathers had Alzheimer's. I don't talk to my mother anymore (who is 68) so I don't know how she is doing, and my father (70) seems to be OK so far, but he's always been a bit 'scatty', so early signs would probably be hard to detect. I'm in my mid 40s but I've long had a lingering fear that Alzheimer’s will get me at some point. I find it absolutely terrifying at the prospect of losing who I am. On and off I tinker with ways of capturing who I am in some way, or regularly think of ways I could invent support devices to assist me when my brain goes to mush. I am definitely preoccupied with this topic. I doubt though, that I'll ever come up with anything to help; I'm simply not clever enough. I am less intelligent today, than I was yesterday. The anti-depression drugs probably don't help in that regard either.

This is why I come to HN every day... The richness of the topics covered, and the knowledge that the comments section is a safe place to share...

Please pardon my self-reflection.


Dr Rhonda Patrick and Peter Attia are two very prominent researchers that I follow in longitivity and neural degeneration. they discuss APOE4 as being a strong indicator of Alzheimer’s susceptibility. If you have It in your genome it’s scary but also a lot of research goes into preventative means. For example anti inflammation diet is a strong factor because any diseases especially Alzheimer’s is triggered by chronic inflammation. They swear by tumeric (curcumin) extract and probiotics. Also a lot of biomarkers are good for measuring as well as some activittieis like of course exercise but also saunas.

Alzheimer’s is definitely terrifying but leaps and bounds have been made in prevention.

I’m working on a tool to help monitor and track some of these preventative measures: Meports.com


It's difficult to find any scientific paper's by these prominent researchers. Where would one find those?

As far as I know, there is no concrete evidence that proves any causal relationship between inflammation and neurodegenation.


Maybe no evidence of a causal relationship, but AD is characterized by neuroinflammation, as are many other neurodegenerative diseases.


For those who want to interpret their own results:

Search your report for rs429358; also reported as gs246.

(T; T) is the normal variant.

(C; C) or (C; T) is estimated to increase your chances by "12x for late-onset Alzheimer's and 61x for early-onset disease"


Have you looked into the phenomena of grounding (making the electric potential between your body and the earth 0) as a mechanism for reducing inflammation?


There is an excellent German ZDF documentary about Alzheimer/Dementia at young people: https://www.zdf.de/dokumentation/37-grad/37-das-grosse-verge...


Diseases which affect your brain are quite bizarre in terms of quantifying the effects. I have some lesion damage from multiple sclerosis, but there's very little information available on what effects, if any I'd be able to identify. It's quite a bizarre experience to have physical damage that manifests in such a way that the entire outcome is subjective (was not putting clothes in the dryer an effect of Alzheimers? maybe), though clearly in this case the results are later measurable as the disease progresses. Nerve damage lower in the spine is easier to make judgements about, but still not perfect (for me this manifests as sensation loss, which is only measurable by stabbing me with a needle and asking how it felt).

Though obviously unobtainable, I wish there was better ways of measuring cognitive damage than drawing overlapping pentagons, though I seem to be able to pass that one with my own evaluation despite lack of drawing skills.


The Brain has a fair amount of redundancy and adaptability, but you use that to deal wide a huge range of issues. So, up to a point you simply get worse side effects from aging, concussions, drug use etc. Making a list of symptoms hard to generalize.


Yep. For MS in particular you can get very specific damage that can't be mitigated by other parts of the brain, but in general the amount of malleability hides a lot of impact until later.


This is the kind of stuff that keeps me up at night. I really hope we can make breakthroughs with these sorts of things soon.


Bonus: sleep deprivation is thought to cause brain damage.


If one of the functions of sleep is to remove toxins in the brain then this essentially follows.


My grandfather is 79 and got his alzheimer's diagnosis this fall. He's lived a long, absolutely amazing life and inspired me to become an engineer. He's the kind of man that if he wants something done, he learns what to do and does it.

My grandfather lived his life, so I understand it's very different from the people who develop the disease in their 30s when they were supposed to raise children, start businesses, find their career niche and maybe their lifelong hobby. My grandfather did all that but I'm still very sad. He will forget everything he did, all the jobs he created with his successful businesses, all the laughs from me and my brother when he shared his blunders in life, all the math he learned and loved ... really everything he holds dear.

I remember reading the Wikipedia article about Claude Shannon and crying a few years ago. He also died of alzheimer's and in his last days, he'd forgotten the profound impact he made on the world. I just can't imagine a worse fate, your body shutting down and all your achievements and experiences fading from memory. It would be worse to experience it as a young man, but no matter when it strikes, it's a way to go that nobody deserves.


This topic is touched upon briefly in the excellent game / walking simulator "Firewatch".


Thank you, the trailer looks fantastic.


I don't work for Steam or the creators of Firewatch, but here's the link: https://store.steampowered.com/app/383870/Firewatch/


“He’s still my family,” she says. “If your family is in trouble, you take care of them. There isn’t another choice. You don’t just walk away.” Robin has contemplated , made me cry. Family means we are there to support and not run away. Great piece and hope there is some breakthrough soon for this and no one face this anymore.


My wife's friend lost both her mother and father to alzheimer's. She is absolutely terrified about it.

It's an awful disease. We should make it a top priority to put an end to it.


Common theme in Science is showing how gut bacteria etc... is affecting inflammation and alzheimers. If we "knew" that eating refined sugars/processed foods in our diets was contributing to our chance of getting alzheimers. How many people would actually stop eating refined sugar... probably not as many as we hope



I see someone is subscribed to Peter Attia's Newsletter.

On topic, this was seriously a very good read and I seem to have a strange obsession of reading about afflictions of the brain and how they manifest in different people.


How very sad. I don't have the same genetic issue he does, though I do worry about this disease and it's frequency in my family tree. Frankly, I hope for a cure.


This sounds insane to say, if you haven't lived with a parent or family member with dementia, but if that happens to me I really hope I have the nerve to kill myself.


Not insane at all. I’m with you on this. I grew up with my grandma, who lived with my family. She was a cool, collected, highly stable person who worked her whole life as a doctor. I guess this sounds really heavy thinking about it now, but it didn’t seem so at the time when she told me once when I was a teenager that if she ever had dimentia that I should kill her somehow. She was of course to some extent trying to articulate her feelings on the severity of the condition, but I did get the concrete sense that she was also being literally serious. Fortunately she got cancer around the same time she got dimentia, because I’m not sure I could have done it.


I have told my partner that if I get dementia, I would like to die. I didn't say he should kill me, but I hope that he wouldn't have to.


In the end stages, the body looses the ability to regulate temperature.

Strange idea though, can one speed up dementia? Accelerate it?


There are a lot more humane methods to kill.


Jesus, thank you haha.


I fervently believe its just a matter of time (hopefully the next 10 yrs) til we add "end-of-living power of attorney" to the list of documents that govern how we get old.

This legal document would lay out instructions to implement assisted suicide upon reaching a (difficult I know) threshold of mental/physical impairment.

With the exponentially increasing health care burden that aging baby boomers are inflicting on gov't purse strings it shouldn't receive much resistance.


This gets insanely complicated legally and ethically, because there has to be independent proof of loss of mental competence (which happens when...?) - but paradoxically, assisted suicide legislation to date assumes a person is competent to make the decision for themselves.

Clearly both can't be true. So at best you end up in a brief window where someone can be assumed to be competent enough to understand their situation while also understanding that the competence may disappear in the near future - possibly by the time they've travelled to a clinic - and someone else will be making a life-ending decision on their behalf.

There also has to be no suspicion that anyone will benefit from accelerating the suicide option - which is not always as straightforward as it sounds, and would ideally have to be investigated explicitly on a case by case basis.

My mother had middle-stage Alzheimer's at 90, although - perhaps mercifully - cancer killed her before Alz could.

We had issues with power of attorney, because she was very clear she wanted to go home and live on her own, and it was absolutely obvious that she wasn't able to do so without endangering herself.

Aside from the emotional heartbreak of having to tell someone over and over every time you meet that they can't have something they really want - because she couldn't remember a conversation from minute to minute, never mind day to day or week to week - there were also a formal legal process involving two oversight bodies (local services, and the national Court of Protection) to make sure that keeping her in a home against her will was actually in her interests.

It would have been far harder if she'd left a living will saying "Please make arrangements for assisted suicide when it gets to this stage" and then apparently changed her mind as the disease progressed to the point where there was no possibility at all of mental competence.


Moreover many of us have seen people slowly disappear to Alzheimer.


I have tears. I fear this more than I realized before.

I think I just need to say a few things. So they exist somewhere, because of that fear, anger and sadness brought to me by this story.

I remember the day I woke up, and by that, I mean the difference between being that kid, experiencing, and who I am today.

It happened for me in 2nd grade. End of year, and I realized I could no longer choose to read, it just happened. And I was angry, and excited at the same time.

Was never the same.

That year was the beginning of me, and while I remember a lot from my very early years, those memories aren't like the ones I have later on.

I would fear going to sleep. Would I be the same again, or someone new, or would I forget those realizations I had at the end of that second school year?

The idea of "me" being a fragile state, a pattern that tends to endure, provoked a sense of guardianship. I am in charge of me, nobody else.

That caused me considerable grief growing up. Others, wanting to help, were dofficult to let in. How can I tell that, the human teasing out of who we are becoming, from manipulation rooted in self-serving, toxic ends, not mine, me?

Took years to resolve, and with it came a joy in knowing me, seeing me happen, grow. And others. People of all kinds. It is fun to meet them, see who they are.

That should explain the fear. I am very aware of me, that identity I felt congeal into a thing made aware, to grasp, and guard lest it fase, shift, be lost.

To have it just degrade, fade away despite ehat I know must be a painful struggle...

We need to do the work on this thing. It could be any of us, and ours facing this quiet horror.

Jo is a lucky person. He has someone who knows his story, who can take him back, connect.


Have you read “Buddhism, plain and simple”?

We share many ideas and have gone through a similar awakening. As most of the people commenting here, I wish we could all gather around a coffee table to discuss that book and others...

Please, if you haven’t read it, consider doing so :)


I will. Have not. Thanks.

That gathering would be epic, very high value.

I was touched by this. Made me think of things I had set aside.

A little dismayed I got negative votes. Was just sharing. Maybe unwise, but like I said, Jo and what he is experiencing...

Yeah, a gathering to just chat, share, good, bad, would have high value.


I have also just put a (used) copy in my Amazon basket.

@ddingus - ignore the haters. I also shared elsewhere on this thread and fully expect to take a vote hit. Sharing shouldn't be about other people, it's about you. If there's anything this whole thread and linked article should tell us, it's that we are all individual people with our own histories and personalities, and each one of us is just as precious as every other.


Really, it's a signal. A simple query: am I alone in this? Have you experienced this?

And it is sent, not requiring a response. More like just that signal, Others May hear, get something from.


Indeed we are. And oh so fragile!

:D


Reading this will rightfully scare the bejeezus out of us. The question is, what can we do? Alzheimer is sometimes referred to as diabetes type 3. Cutting out sugar and eating a low carb diet is a good precaution. It likely wouldn't have helped Jo, but it might save quite a few of us from this scary outcome.


> Alzheimer is sometimes referred to as diabetes type 3.

Just because it is referred to that way doesn't mean that it is actually the case.

The hypothesis that AD=Diabetes has been around for at least ten years [1]. If it were true, I would have expected to see some results by now about how diabetes interventions can slow the advance of AD, if not prevent and/or reverse it entirely. AFAICT there have been no such results. That casts the hypothesis into serious doubt IMHO.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/


We're only now just waking up to the reality that type-2 diabetes can be reversed w/ carbohydrate restriction, even though the data to support that has been around for decades. I don't think a decade is an unusual latency for the medical institution to lay idle on.


>We're only now just waking up to the reality that type-2 diabetes can be reversed w/ carbohydrate restriction

I don’t think this is a new/recent revelation at all (and in fairness, I cut the next part of your quote that acknowledges decades old research).

And while not all cases of type 2 can be reversed (most can) but maybe more importantly 100% of cases can be prevented through diet/exercise.


>100% of cases can be prevented through diet/exercise.

Is that accurate? Honest question. I know adult onset diabetes is strongly linked to obesity, but would have thought there are other potential causes as well.


This is 100% wrong. There are cases of monogenic type 2 diabetes (e.g MODY) which has a similar inheritance as the Alzheimer's case in the story. Though rare, it certainly refutes the 100% assertion.


Ugh, I did my PhD work in a lab that did both Alzheimer's and diabetes research, and the "type 3 diabetes" label drove me up the wall. Especially considering type I and type II have totally different etiologies anyway (athough there were totally crazy attempts to unnecessarily strongly connect those, by PIs looking to justify grant money)


I found this study that a ketogenic diet improved some cognitive scores in some patients with mild alzheimer's [1]. The diet is also sometimes prescribed for intractable epilepsy [2]. There is also a link between epilepsy and alzheimer's, with some AD patients having seizures as the disease progresses (like in Jo's case).

1. https://www.ncbi.nlm.nih.gov/pubmed/19664276

2. https://www.epilepsy.com/learn/treating-seizures-and-epileps...


Diabetes type 3!?!?! I have never heard this but I'll sure as he'll keep this in mind now.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045545/

"Epidemiological and basic science evidence suggest a possible shared pathophysiology between type 2 diabetes mellitus (T2DM) and Alzheimer's disease (AD). It has even been hypothesized that AD might be ‘type 3 diabetes’. The present review summarizes some of the evidence for the possible link, putative biochemical pathways and ongoing clinical trials of antidiabetic drugs in AD patients."

If they are linked by a common factor, it makes me scared to think of how many alzheimer's patients there will be in 40 years.


You really need to cite such a claim. Thanks.


The term 'type 3 diabetes' has been around for at least a decade and has been written about in some of the most mainstream publications around. It's hardly a term that needs to be cited. If you were to use Google, you could find well cited articles like this.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/

Or, here's some more current research being done at the Mayo clinic.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-mi...


I've now googled it and learned it's a controversial term not embraced by the medical community. Thanks.


I'm in the medical community, and one of the largest Alzheimer's research centers. It's embraced by many.


He only seemed slightly overweight. I think this is only to be considered when a patient is significantly overweight or obese. Dementia rates are certainly higher in the Obese population.

In any event--this man had a confirmed genetic condition that was the definite cause of his dementia. He was going to get it, no matter what actions he took.

While it may be true that some dementia in obese people may not have manifested if that person did not overeat, that is not the case here.

I recommend you read the article.


I literally said "It likely wouldn't have helped Jo" in my comment.


That Diabetus 3 theory does not correlate with the actual data.

https://www.researchgate.net/figure/Fig-1-World-map-illustra...

Note that the data is obviously tainted by the reduced average lifespane in some countrys.

There is a nice list of theorys allready:

- If sleep deprivation was the source, then citys with a wild nightlife should show more cases then countryside citizens.

- Diets exist in all forms and colours, if one would exclude the alzheimer component- the ethnic group would stand out. Instead they seem rather more prone then the default groups.

https://www.researchgate.net/publication/278789418_Prevalenc...

- Blood-Brain Barrier crossing viral Infections introduced DNA-Damage http://coconutketones.com/wp-content/uploads/2016/10/JAD_ene...

-Genetic Disposition http://www.scielo.br/pdf/dn/v9n3/1980-5764-dn-9-03-00219.pdf

- The usual noise. People condemning any behavior they dislike of any group they dislike as the source.

I can only add speculation of dubious value:

- What if dementia was the result of the memory storage process being finite? But wouldn't a sensory value deprived mice for example then be save from the effects? Has anybody seen a experiment, where high cognition loads and stress/ sleep deprivation where driven against low cognition, stress and sleep deprivation?


There is a link between Alzheimer and fungal infections in the brain and a compromised blood/brain barrier.


http://news.bbc.co.uk/2/hi/health/8492918.stm

Tldr:- Didn’t find any specific gene linkage. Less stress, low cholesterol and the other standard healthy metrics seems to make a difference.


The Pentagons really drove home what it is like to have this. It must be so hard...


There's a lot of scientific evidence that medical marijuana can remove beta-amyloid build up in the brain. There is also evidence that unknown spirochete diseases can cause Alheimer like symptoms. There is also cause for concern that bio-pesticides that are GMO based are can infect the brain and cause symptoms like this as well. I would definitely never give up if this happened to me. Antibiotics, antiparasite, diet changes, small microdosages of CBD/THC based marijuana strains, neuroprotective compounds, etc --- all through a process of elimination with a journal. I hope Jo or somebody like Jo reads my comment and tries these things.


> There's a lot of scientific evidence

I would like to see this. Do you have a link to a peer reviewed study?



It's the food. Alzheimer looks like a form of arteriosclerosis of the brain.

In autopsies to Alzheimer patient brains we can see the small arteries of the brain clogged with fat and colestrol, here is a video showing this with pictures - https://youtu.be/WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7...

If plaque building in main arteries can cause heart atacks, the exact same blood is getting to the brain - imagine what it will do there.

If anyone here has Alzheimer in the family and would like to preventively change their diet, have a look at this other video from that playlist - https://www.youtube.com/watch?v=t-noCw4LsY4&list=PL5TLzNi5fY...

In summary, there are strong indications that a whole food plant based diet low in fat is the best-known way to prevent Alzheimer's and even alleviate the symptoms.

Hope for Alzheimer Patients: https://nutritionfacts.org/2017/12/26/hope-for-alzheimers-pa...

It's important that the diet is not only plant based, but low in fat as for example there is a lot of Alzheimer's in India where a large part of the population is vegetarian.

This has been linked to ghee (clarified butter), as per this video:

Oxidized Cholesterol as a Cause of Alzheimers Disease - https://www.youtube.com/watch?v=Y15yI5LLlNY


Your conspiracy theory approach to science backed by Youtube videos is obnoxious. The cause of Alzheimer's is still unknown, but most likely related to amyloid plaques. Diet may contribute. Or it may not. In a 38 year old, it's genetics. Period.


Please don't post flamewar comments to HN, regardless of how wrong someone is or you feel they are.

Breaking the site guidelines with throwaway accounts eventually gets your main account banned as well, so please don't.

https://news.ycombinator.com/newsguidelines.html


The videos are summaries of scientific studies, and in the description of each video there are links to a text article on the topic, and from there we have the links to all scientific papers.

For example in the video "Oxidized Cholesterol as a Cause of Alzheimer’s Disease", the sources cited are summarized here in this article - https://nutritionfacts.org/video/oxidized-cholesterol-as-a-c...

If you scroll down and click on the tab "Sources", the linked studies are there.

38 years is a long time, I don't see why the age makes you immediately conclude that it can only be genetic and not influenced by diet.

Getting obese is also genetic, some people can still be slim with the standard western diet, while others start gaining weight at a certain age.

Yey, if you eat right you will likely never get obese, even though you have an obesity-prone genetics.

If some people can get heart attacks at 38, why is it so surprising that they can also get Alzheimer's if they have been eating foods very high in fat and cholesterol multiple times a day non-stop since birth?

If Alzheimer's is triggered or strongly linked to dietary choices, at least we should be informed of that while the studies continue.


Period. So ignorant. At least give those videos a look. There is actual science behind it. Diet contributes big time.


> Period. So ignorant. At least give those videos a look. There is actual science behind it

You may want to post peer-reviewed research papers backing those videos instead. It’s a lot easier to review.


Here are the studies that those videos summarize, I would love to hear your opinion on the validity of the information:

https://nutritionfacts.org/video/oxidized-cholesterol-as-a-c...

You can see the sources by scrolling down and hitting the "Sources Cited" tab. Do you have reasons to believe that the information has been misinterpreted?


I don’t have any opinion on the validity of that information, I’m just suspicious of "evidence" exclusively presented as YouTube videos. Thanks for the sources.




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