Slipping Away: Jo Aubin Has Alzheimer's. He's 38 • Hacker News Board

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#41

Post by Madmallard » Mon, Sep 07, 2015, 12:38 PM UTC

Brakenshire wrote: post #36

Madmallard wrote: post #27

Earlier quoted context omitted.

Let's see: Psychotropics and bacteriocidal antibiotics are both linked with diseases like alzheimers because they are cytotoxic and can lead to oxidative stress and mitochondrial damage. They are also being more and more commonly prescribed. Air's less and less clean. God knows how many chemicals are being added to foods, water, construction, and the environment that are unregulated or poorly studied. I remember seei…

If there's an environmental chemical cause, the 2006 REACH legislation in the EU should provide an interesting comparative study with the US: https://en.wikipedia.org/wiki/Registration,_Evaluation,_Auth... I don't think I'd agree that air is less and less clean, incidentally. There have been big improvements in clean technology for cars and other vehicles, big reductions in the use of coal in developed countries, and…

I think you put too much trust in the government's ability to regulate pollutants and chemical exposures. Governments are like using using an imperative programming paradigm to address a massively parallel system with innumerable amounts of state. Googling "unregulated contaminants" brings up quite a lot of articles.

You might be right about the air cleanliness thing. I recall my father saying how the air was disgusting where I live now, 40 years ago.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#42

Post by jgrahamc » Mon, Sep 07, 2015, 1:05 PM UTC

mgkimsal wrote: post #37

petercooper wrote: post #21

I have had two grandparents die after having Alzheimer's for long periods of time. It's odd because it's like watching someone die in slow motion and when the body does eventually die people often look on it as a relief because the "person" you knew inside had actually faded away a long time ago. It's like a song fading to static versus just stopping.

"It's like a song fading to static versus just stopping." Great analogy, yet also one which may eventually be lost to the mists of time. Much like "disk" icons for "save", younger folks today may have no reference point for what 'radio static' is, or may certainly not in a few years. Between internet radio, self tuning radios, spotify/ipods and satellite radio, "radio static" isn't something I've actively heard mysel…

The sky above the port was the color of television, tuned to a dead channel.

Is that just a complicated way of saying blue?

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#43

Post by nsxwolf » Mon, Sep 07, 2015, 1:15 PM UTC

jgrahamc wrote: post #42

mgkimsal wrote: post #37

Earlier quoted context omitted.

"It's like a song fading to static versus just stopping." Great analogy, yet also one which may eventually be lost to the mists of time. Much like "disk" icons for "save", younger folks today may have no reference point for what 'radio static' is, or may certainly not in a few years. Between internet radio, self tuning radios, spotify/ipods and satellite radio, "radio static" isn't something I've actively heard mysel…

The sky above the port was the color of television, tuned to a dead channel. Is that just a complicated way of saying blue?

No, it's black/white/grey and cloudy. Maybe you're thinking of modern televisions that cut out to a solid color screen, usually blue by default?

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#44

Post by anjc » Mon, Sep 07, 2015, 1:27 PM UTC

feintruled wrote: post #35

anjc wrote: post #16

Earlier quoted context omitted.

I could be totally wrong but, I'm pretty sure that that's just a normal aspect of aging. Every single person I know has experienced some level of cognitive decline with age. The name thing is especially common, I find. So I wouldn't go around thinking you have Alzheimers in your family unless you have more reason to think it.

A function of age and number of children, perhaps. My mother sometimes manages to cycle through all my siblings' names before she gets to me. One time she even threw in the dog's name.. a sad reflection on my position in the family pecking order, perhaps!

Agh same here. First my mother's mother did it when I was a child, then my own mother, and now I'm at it. I've often wondered if there's a learned-behaviour aspect to it, because I've been anticipating it happening to me since I noticed my mother doing it.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#45

Post by coldcode » Mon, Sep 07, 2015, 1:28 PM UTC

There is no disease that scares me more than this: to lose control of my mind. As a programmer besides my hands it's what makes me go. I watched my father fall apart from Hemochromatosis (iron overload), which is easy to treat these days, and especially when his once brilliant mind couldn't even pay for things anymore without being confused. In his case it was due to the iron deposits in his brain but the effect was similar to Alzheimers. It's hard to see the person you knew become someone else.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#46

Post by TheOtherHobbes » Mon, Sep 07, 2015, 2:14 PM UTC

derefr wrote: post #5

trentmb wrote: post #2

I'm only in my 20's- but reading through this 'early indicator' list [1] has me somewhat concerned about myself. But I don't know how much of that is it just being late and me being convinced I have every neurological disorder I happen to read about. [1] http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers...

Everyone has experienced an Alzheimer's- like state at some point. Alzheimer's strongly resembles the effects of the sort of "brain fog" people get when they're overtired (or experiencing caffeine withdrawal), just without the simple remedy of rest. The onset of Alzheimer's itself is recognizable more by 1. your begining to experience such "brain fog" states more and more often (when otherwise well-rested), and 2. yo…

There's a bit more to it than that. I had a relative die of cancer recently, and it was a relief in a way because if they cancer hadn't got them, Alzheimer's would - and it would have taken much longer and been even worse for everyone.

The loss of memory in Alzheimer's simply means you stop remembering stuff. There's no brain fog so far as I can tell. You just - stop remembering.

It has a lot of unexpected practical effects. You can't give someone new stuff, because they won't recognise it as their's, or remember you gave it to them, and they'll think they've lost the old stuff (or someone has stolen it - which is a common delusion.)

You have to be careful about medication and feeding because they won't remember either. It becomes incredibly easy to overdose on meds by accident, or to forget to eat, or to eat too much.

Likewise shopping. When someone's memory is so poor they can't walk around a store and check things off a list, they need professional help.

After a while conversations become incredibly repetitive. In middle stage AS sufferers literally forget what you said at the start of a sentence before you've finished it. They forget they've already asked the same question six times in the last ten minutes - literally.

You can't teach them anything new at all. So if you try to buy various memory aids or anything that needs a bit of thought or learning, they won't find them useful.

Worst of all is the prospect of personality change. Some people become very agitated, abusive, and even violent - which can be a devastating surprise if they showed no signs of that before.

Eventually they stop recognising people or showing much awareness of their surroundings.

My relative actually became more settled and friendlier, which was a very good thing. But there were a couple of support meetings where we are all wondering which way things were going to go.

If they'd gone the other way, it would have been horrible - well, even more horrible - for everyone.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#47

Post by kpmah » Mon, Sep 07, 2015, 2:23 PM UTC

Phemist wrote: post #39

kpmah wrote: post #20

Earlier quoted context omitted.

The incidence of dementia for those aged 30-64 is about 54 per 100000. If you have a test that is 90% accurate and someone tests positive, according to Bayes you have 0.5% chance of actually having it. Testing like that seems pointless to me. Working: (0.9 * 0.00054) / (0.9 * 0.00054 + 0.1 * 0.99946)

Except that you are not picked from the whole population at large, but from a subset of it. Namely the subset that (weakly) believes they have dementia. This changes the incidence rate (or likelihood function) probably by at least an order of magnitude.

You're right. You have to update the probability with all the knowledge you have. Although I would say self diagnosis has a very, very high false positive rate, and if you know you're a hypochondriac that would make the probability drop, plus we don't even have a test for this that is 90% accurate. I'm not sure the difference is an order of magnitude :)

I think my point stands that it doesn't make sense to test for extremely rare diseases because of a self diagnosis.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#48

Post by tptacek » Mon, Sep 07, 2015, 2:39 PM UTC

dsego wrote: post #23

carbide wrote: post #11

Earlier quoted context omitted.

The peanut butter test is interesting. For sufferers of early onset Alzheimer's, the range at which you can detect a smell is different between your left and right nostrils. They used Peanut Butter in this test done by the University of Florida. https://en.wikipedia.org/wiki/Peanut_butter_test

Now you have me worried.

At long last, the fabled credible Google symptom search result revealing that your stuffy nose is a smoking gun indicator of a fatal illness!

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#49

Post by reasonattlm » Mon, Sep 07, 2015, 3:10 PM UTC

thomasrossi wrote: post #25

My father is a neurologist and he always tells me that until the 90s or so, Alzheimer was mush rarer than other diseases (although the life expectancy was not that much shorter than today). There must be some environmental cause to it and it should be pretty simple to get. We only need some control population with similar life-span, one has no exposition to tv, one hasn't something else.. etc

Alzheimer's disease risk is correlated with the amount of visceral fat tissue you carry and how long you carry it for. Like type 2 diabetes the prevalence is very much a result of the increasing degree to which people are overweight.

Re: Slipping Away: Jo Aubin Has Alzheimer's. He's 38

#50

Post by MichaelGG » Mon, Sep 07, 2015, 3:55 PM UTC

bhrgunatha wrote: post #14

A friend of mine suffering from Huntington's disease died last year of complications. I always think of Alzheimer's similarly to Huntington's, although I think the prognosis for Alzheimer's has a shorter average life span from diagnosis. It's unspeakably distressing seeing people you know degenerate in seemingly random ways, knowing full well there's literally no chance of improvement, just temporary pauses in the in…

I have seen this happen, too, and it's terrible for everyone involved. Even when a patient has previously expressed a preference for death versus this decay, medical personnel and family don't always go along. It's akin to torture really - the patient is unable to take their own life in such a state, even though a healthy previous version of them requested it.

It makes me so angry, as instead of good memories of the person, you get this ~decade of someone else essentially destroying the memories.