Slipping Away: Jo Aubin Has Alzheimer's. He's 38(site.macleans.ca)
site.macleans.ca
Slipping Away: Jo Aubin Has Alzheimer's. He's 38
http://site.macleans.ca/longform/alzheimers/index.html
9 comments
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.
It makes me so angry, as instead of good memories of the person, you get this ~decade of someone else essentially destroying the memories.
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 myself in many years. Haven't seen a tube TV picture fade away in to a glowing dot in decades either. :/
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 myself in many years. Haven't seen a tube TV picture fade away in to a glowing dot in decades either. :/
The sky above the port was the color of television, tuned to a dead channel.
Is that just a complicated way of saying blue?
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?
jgramhamc is referencing a William Gibson line from a cyberpunk book. The line is dated because kids think an untuned TV channel is blue. Old people[1] like us recognise the metaphor[2] for what it is. Other perhaps anacronistic bits in the book include people in cabs getting faxes sent to the cab which are printed on cheap paper.
(Although I prefer to think that this is a description of an alternate future, not our own future extrapolated, which neatly does away with worries about fax paper).
This comment is a long way of saying ThatsTheJoke.png
[1] sorry jgrahamc!
[2] or analogy.
(Although I prefer to think that this is a description of an alternate future, not our own future extrapolated, which neatly does away with worries about fax paper).
This comment is a long way of saying ThatsTheJoke.png
[1] sorry jgrahamc!
[2] or analogy.
Agreed, the static was back in the good old CRT days:
https://www.google.com/search?q=tv+static&tbm=isch
https://www.google.com/search?q=tv+static&tbm=isch
>It's like a song fading to static...
Nicely put. These songs always sadden me. :(
Nicely put. These songs always sadden me. :(
> He visited his family doctor, looking for answers. He had been diagnosed with depression and anxiety in university, and now the doctor focused on that and prescribed anti-depressants.
This is the fall-back position for lazy doctors. I know because I've been through it with my wife and a different condition.
We knew at the time that the diagnosis of depression was bullshit, and immediately sought second (and third) opinions to get to the bottom of what was going on.
This is the fall-back position for lazy doctors. I know because I've been through it with my wife and a different condition.
We knew at the time that the diagnosis of depression was bullshit, and immediately sought second (and third) opinions to get to the bottom of what was going on.
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
There could also be a diagnostic factor. It's only since the 90's or so, when effective treatments for Alzheimer's started to show up, that doctors started to really differentiate between Alzheimer's and 'normal' senility and age-related dementia.
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.
It could be something trivial like Aluminum in bread and pastries because bakeries switched to faster (compared to iron) aluminum baking trays.
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 seeing something recently like thousands of chemicals are being used without FDA approval.
There's also the grandfather theory or whatever. The few generations before us are some of the first in the industrial revolution, and all of the new exposures in that are causing DNA changes that are propagating to offspring, and newer generations are feeling the negative after effects of it.
Yup, we're fucked.
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 seeing something recently like thousands of chemicals are being used without FDA approval.
There's also the grandfather theory or whatever. The few generations before us are some of the first in the industrial revolution, and all of the new exposures in that are causing DNA changes that are propagating to offspring, and newer generations are feeling the negative after effects of it.
Yup, we're fucked.
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 so on.
And I doubt other environmental pollutants are significantly higher than they were in the age before serious environmental legislation (for instance, before the EPA was created)
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 so on.
And I doubt other environmental pollutants are significantly higher than they were in the age before serious environmental legislation (for instance, before the EPA was created)
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.
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.
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...
[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. your beginning to experience a bit of "brain fog" all the time, such that you at your "best" is no longer as awake/alert/aware as it was previously.
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. your beginning to experience a bit of "brain fog" all the time, such that you at your "best" is no longer as awake/alert/aware as it was previously.
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.
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.
Oh geez. Don't worry about it. Classic "webmd hypochondria."
Shouldn't really assume that. I mean, yes, it's unlikely, but given that most of the research is around prevention of damage, surely it's better to get tested early if you even remotely suspect there is a chance of it being Alzheimer's.
Yes, actually one should assume that; not doing so is irrational. There are many other diseases that one might have without even knowing they exist. It would be extremely foolhardy to get tested for them if/when you become aware of them.
"given that most of the research is around prevention of damage"
Given that aren't any preventative treatments, you're barking up the wrong tree.
"surely it's better to get tested early if you even remotely suspect there is a chance of it being Alzheimer's."
No, it's surely not.
"given that most of the research is around prevention of damage"
Given that aren't any preventative treatments, you're barking up the wrong tree.
"surely it's better to get tested early if you even remotely suspect there is a chance of it being Alzheimer's."
No, it's surely not.
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)
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.
I think my point stands that it doesn't make sense to test for extremely rare diseases because of a self diagnosis.
Depends on the cost/benefit of being tested. Often non clinical early screening is a much better option.
For Alzheimer's that could be as simple as getting enough sleep for a solid 2-4 weeks. As the disease progresses really slowly waiting that time period has minimal impact, but A the pre-test is cheap and good for you, and B you rule out a lot of false positives.
For Alzheimer's that could be as simple as getting enough sleep for a solid 2-4 weeks. As the disease progresses really slowly waiting that time period has minimal impact, but A the pre-test is cheap and good for you, and B you rule out a lot of false positives.
There is no real test for alzheimer yet. It takes a while to establish a diagnosis. The closest thing that comes to qn actual test is the recently approved Amyvid, but then it simply shows the accumulation of Tau proteins and is not 100 percent predictive of Alzheimer.
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
https://en.wikipedia.org/wiki/Peanut_butter_test
Before someone freaks out over peanut butter, note that according to Wikipedia an attempt to duplicate these results has failed.
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I feel like everyone has those symptoms from time to time
List helpfully also has "What's a typical age-related change?" under each - those are normal manifestations of each point.
Early onset Alzheimer's is extremely rare. Even if you perfectly showed all the symptoms on that list it's still unlikely you have Alzheimer's. Read up on Bayes' theorem ;)
My grandmom probably had Alzheimer's because she would always forget what my name was (she'd think she is talking to my little brother) or she would ask the same questions every 5/10 minutes.
I can see slight similarities with my dad now. He might repeat the same question within 5 minutes-- this happens when he's really tired.
I remember there was a discussion here about preventative drugs? Anyone one had experience with them?
I can see slight similarities with my dad now. He might repeat the same question within 5 minutes-- this happens when he's really tired.
I remember there was a discussion here about preventative drugs? Anyone one had experience with them?
> He might repeat the same question within 5 minutes-- this happens when he's really tired.
This could be perfectly normal age related deterioration: https://en.wikipedia.org/wiki/Memory_and_aging
There are things you can do to reduce the effect, but it will affect most of us to a certain extent eventually if we live long enough. Heck, I show such symptoms when tired at 37, have done for years, and suspect everyone does too. Also, my late grandmother had problems with names (she'd sometimes run through a couple before getting the right one, even flipping genders part way through the list) but otherwise seemed to have a fairly complete and pretty well polished set of marbles until the end.
Of course if you have any concern you should broach the subject of consulting a relevant doctor. It might be nothing (well, nothing unusual) but it is worth being slightly paranoid with such matters in case it is something significant for which there are treatments to delay, mitigate, or possibly block, more serious ramifications.
One key seems to be remaining active, both mentally and physically. Staying mentally active is a no brainer here (sorry...), and recent studies seem to indicate that the old wisdom of staying active prolongs not just physical fitness but mental awareness and other abilities too (https://www.newscientist.com/article/dn28001-why-choosing-th...).
This could be perfectly normal age related deterioration: https://en.wikipedia.org/wiki/Memory_and_aging
There are things you can do to reduce the effect, but it will affect most of us to a certain extent eventually if we live long enough. Heck, I show such symptoms when tired at 37, have done for years, and suspect everyone does too. Also, my late grandmother had problems with names (she'd sometimes run through a couple before getting the right one, even flipping genders part way through the list) but otherwise seemed to have a fairly complete and pretty well polished set of marbles until the end.
Of course if you have any concern you should broach the subject of consulting a relevant doctor. It might be nothing (well, nothing unusual) but it is worth being slightly paranoid with such matters in case it is something significant for which there are treatments to delay, mitigate, or possibly block, more serious ramifications.
One key seems to be remaining active, both mentally and physically. Staying mentally active is a no brainer here (sorry...), and recent studies seem to indicate that the old wisdom of staying active prolongs not just physical fitness but mental awareness and other abilities too (https://www.newscientist.com/article/dn28001-why-choosing-th...).
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.
My wife's grandmother has a traffic accident induced Alzheimer, she showed signs, after taking medication, she was slowly going back to normal, after a couple of months the deterioration of memory started again and now the normal dosages do not help anymore.
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.
Do people usually remember the current date? I can almost never tell it and it was like this since forever.
I don't, unless I'm working for someone else. I was in Macy's once, and this angry salesperson was having a bad day, and I just wanted to avoid the dude. Moved to another counter. Well, Mr. Happy came over to ring me up.
I started to write my check and couldn't remember what date, and even what year, we were in.
Actually, why rushed, or don't like a person I interacting with; my memory fails me, or I say things I don't mean. This one car hussler was trying to buy my car, and doing the "dance"--it's just worth this much to me--dance, and I'll half your advertised price. Well he took me by suprised, with the hard bargaining/bad manners in my garage. I just wanted the guy to go. When he walked out he noticed a '68 Karman Ghia(no rust-complete--good orig. condition). He asked how much. I told me $200.00 I told him I mistook his question later, but to this day I wonder why I said 200.00. I sometimes wonder if I'm that guy who that's not too savy, and gave always to much over the years? I remember giving away my inheritance, and look back and regret it. It seemed like the right thing to do at the time, but I have a feeling this particular family member manipulated me when I wasen't felling well psychologically?
Anyway, I think stress can play with judgement, and memory. To those that prey on weak individuals, or capitalize on someone's misery; you're not a good person--no amount of denial will take the truth away?
I started to write my check and couldn't remember what date, and even what year, we were in.
Actually, why rushed, or don't like a person I interacting with; my memory fails me, or I say things I don't mean. This one car hussler was trying to buy my car, and doing the "dance"--it's just worth this much to me--dance, and I'll half your advertised price. Well he took me by suprised, with the hard bargaining/bad manners in my garage. I just wanted the guy to go. When he walked out he noticed a '68 Karman Ghia(no rust-complete--good orig. condition). He asked how much. I told me $200.00 I told him I mistook his question later, but to this day I wonder why I said 200.00. I sometimes wonder if I'm that guy who that's not too savy, and gave always to much over the years? I remember giving away my inheritance, and look back and regret it. It seemed like the right thing to do at the time, but I have a feeling this particular family member manipulated me when I wasen't felling well psychologically?
Anyway, I think stress can play with judgement, and memory. To those that prey on weak individuals, or capitalize on someone's misery; you're not a good person--no amount of denial will take the truth away?
These test aren't really about just getting the answer right or wrong, but also about how you react when you can't remember the answer. There's a big difference between going "oh I can never remember that", "...wait...I used to know that" and confidently getting the answer wrong.
Me neither, probably because it's rarely useful to me in day to day life.
I wonder if in a while the world will move to something like cryonics for people about to die a slow and unpleasant death. I'm not sure it could be any worse than the current situation.
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 inevitable.
My friend was quite open when speaking privately in the early days and said things like "It's OK my mind is still there" when you saw him shaking or unable to walk properly.
Later though his mental capacity deteriorated and one time when I asked whether he was aware of his diminishing function he said "No". He understood the question and for me it was a minor consolation, as heartbreaking as it seems, for him to be unaware of that. To think that you are aware of your situation when your body an mind are basically failing would be that much more horrific. Still it's small consolation. His wife also suffered tremendously, as strong and stoic as she is. Living with these diseases takes a toll on everyone around you too.