Spinal-Fluid Test Is Found to Predict Alzheimer’s
August 10, 2010 2:47 AM Subscribe
Spinal-Fluid Test Is Found to Predict Alzheimer’s "Researchers report that a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease."
My spinal test showed that I am 100% likely to get Alzheimers.
Also, my spinal test showed that I am 100% likely to get Alzheimers.
I had a test done, and based on that test, I'm pretty sure I'm going to get Alzheimers.
The latest word is that I do not have Alzheimers yet, but I probably will soon.
I'm pretty sure I don't have Alzheimers, but if I get it, I'll let you know.
posted by twoleftfeet at 3:17 AM on August 10, 2010 [5 favorites]
Also, my spinal test showed that I am 100% likely to get Alzheimers.
I had a test done, and based on that test, I'm pretty sure I'm going to get Alzheimers.
The latest word is that I do not have Alzheimers yet, but I probably will soon.
I'm pretty sure I don't have Alzheimers, but if I get it, I'll let you know.
posted by twoleftfeet at 3:17 AM on August 10, 2010 [5 favorites]
Sorry. When you can't laugh, you die.
posted by twoleftfeet at 3:29 AM on August 10, 2010 [3 favorites]
posted by twoleftfeet at 3:29 AM on August 10, 2010 [3 favorites]
All snark aside, this is actually potentially pretty important. The amyloid hypothesis has been one of a few hypothesis for the cause of Alzheimer's disease (AD). If elevated amyloid beta peptides are strongly correlated later development of AD, then it a.) adds another piece of evidence, and b.) lends additional support to the potential for a couple of new classes of drugs that can reduce the generation of amyloid beta peptides - the gamma secretase inhibitors and the BACE inhibitors. As one could imagine, the ability to potentially identify those patients at high risk for development of AD, and the ability to delay the progression of amyloid plaque formation with a pill, is very intriguing.
posted by scblackman at 3:30 AM on August 10, 2010 [5 favorites]
posted by scblackman at 3:30 AM on August 10, 2010 [5 favorites]
I hope you're right scblackman --- but this predicts Alzheimers for people who already have "significant memory loss". I ask this sincerely-as a family member, do I care about the exact underlying disease causing the dementia? If it leads to meaningful treatment, I guess I do. But that treatment needs to be meaningful.
posted by vitabellosi at 3:41 AM on August 10, 2010 [2 favorites]
posted by vitabellosi at 3:41 AM on August 10, 2010 [2 favorites]
My grandmother died of Alzheimer's. During her last days she couldn't recognize her own children.
Alzheimer's scares the shit out of me. I don't mean to be flippant about that. If I'm going to lose my mind I want to do it in a controlled fashion; taking a blue pill or a red pill. I'd like to make a rational choice about it before I go crazy.
The thought that some brain disease will sneak up on me and I wouldn't even notice it coming is terrifying.
Any potential cure is good news to me.
Sorry to make a joke out of it, but again... when you can't laugh, you die.
posted by twoleftfeet at 3:43 AM on August 10, 2010 [15 favorites]
Alzheimer's scares the shit out of me. I don't mean to be flippant about that. If I'm going to lose my mind I want to do it in a controlled fashion; taking a blue pill or a red pill. I'd like to make a rational choice about it before I go crazy.
The thought that some brain disease will sneak up on me and I wouldn't even notice it coming is terrifying.
Any potential cure is good news to me.
Sorry to make a joke out of it, but again... when you can't laugh, you die.
posted by twoleftfeet at 3:43 AM on August 10, 2010 [15 favorites]
The new study included more than 300 patients in their 70s, 114 with normal memories, 200 with memory problems and 102 with Alzheimer’s disease. [...] every one of those patients with the proteins developed Alzheimer’s within five years. And about a third of people with normal memories had spinal fluid indicating Alzheimer’s. Researchers suspect that those people will develop memory problems.
Wait. So one-third of the healthy test subjects had amyloid beta clumps - precursors to the "Ice-9" chemical sheets that characterize prion disease and (ostensibly) Alzheimer's - floating around in their spinal fluid? Horrifying.
posted by kid ichorous at 3:49 AM on August 10, 2010
Wait. So one-third of the healthy test subjects had amyloid beta clumps - precursors to the "Ice-9" chemical sheets that characterize prion disease and (ostensibly) Alzheimer's - floating around in their spinal fluid? Horrifying.
posted by kid ichorous at 3:49 AM on August 10, 2010
The question is whether these proteins are a cause or a side-effect of the disease.
posted by delmoi at 3:50 AM on August 10, 2010
posted by delmoi at 3:50 AM on August 10, 2010
Article in question here.
Technically, AD can't be truly diagnosed until after you die as it requires an autopsy and histological examination of the brain. By this criteria, the "β-amyloid protein 1-42/phosphorylated tau181P biomarker mixture model" was 94% sensitive, not 100%. Still pretty impressive.
posted by kisch mokusch at 4:20 AM on August 10, 2010 [1 favorite]
Technically, AD can't be truly diagnosed until after you die as it requires an autopsy and histological examination of the brain. By this criteria, the "β-amyloid protein 1-42/phosphorylated tau181P biomarker mixture model" was 94% sensitive, not 100%. Still pretty impressive.
posted by kisch mokusch at 4:20 AM on August 10, 2010 [1 favorite]
Or is the disease really just measured by intensity: everything above a certain threshold of dementia is Alzheimer's, everything below "just gettin' slow, I s'pose..."?
posted by Civil_Disobedient at 4:39 AM on August 10, 2010
posted by Civil_Disobedient at 4:39 AM on August 10, 2010
Not peer reviewed, and they draw some conclusions that aren't supported by the research. Call me when an independent team verifies the results.
posted by blue_beetle at 5:15 AM on August 10, 2010
posted by blue_beetle at 5:15 AM on August 10, 2010
Until there's a cure for Alzheimer's, predictive tests just make nightmares.
Suppose you could know ten years ahead that you were going to lose the memories of most of your life. Would you want to know that?
posted by twoleftfeet at 5:15 AM on August 10, 2010
Suppose you could know ten years ahead that you were going to lose the memories of most of your life. Would you want to know that?
posted by twoleftfeet at 5:15 AM on August 10, 2010
twoleftfeet: Yes, I would.
It would directly influence my decisions about doing dangerous things that might result in premature death.
posted by Pallas Athena at 5:28 AM on August 10, 2010 [9 favorites]
It would directly influence my decisions about doing dangerous things that might result in premature death.
posted by Pallas Athena at 5:28 AM on August 10, 2010 [9 favorites]
Until there's a cure for Alzheimer's, predictive tests just make nightmares.
Unless you're in the situation of trying to get a loved one to move from denial into taking action, like deciding on durable power of attorney, etc. Having a more "scientific" test (i.e., less subjective from the patient's point of view) could help.
posted by digitalprimate at 5:39 AM on August 10, 2010 [2 favorites]
Unless you're in the situation of trying to get a loved one to move from denial into taking action, like deciding on durable power of attorney, etc. Having a more "scientific" test (i.e., less subjective from the patient's point of view) could help.
posted by digitalprimate at 5:39 AM on August 10, 2010 [2 favorites]
I'd definitely want to know, twoleftfeet. I'd make a point to properly record worthwhile things, to communicate with people who would be caring for me my wishes, and so-on. To a certain extent I think that everyone should be doing that, regardless of loss of memories, but if I had the misfortune of being fated to Alzheimer's, I'd want to know that for sure. Then I would have ten years to put into place certain measures for myself and my care in the future.
posted by Mizu at 5:44 AM on August 10, 2010 [4 favorites]
posted by Mizu at 5:44 AM on August 10, 2010 [4 favorites]
Early and accurate detection of Alzheimer’s disease would be important for discovering new AD therapeutics for a couple of reasons. First, in clinical trials, a hurdle can often be accurately identifying the patient population. For instance, including non-AD patients in a trial for an AD drug could change the outcome of a trial from significant to non-significant. No significance - no FDA approval - no new Alzheimer’s drug.
In addition, most 'cures' for Alzheimer's coming down the pipeline are aimed at halting or slowing the progression of the disease. Obviously it would be beneficial to begin treating these people for the disease as early as possible when a therapeutic is on the market. However, it is also useful in clinical testing as well. As there is no direct way to look at neurodegeneration in the brain of a living person, secondary measurements, such as scores on memory tests, will be needed to determine if a therapeutic is successful. And in these scoring systems it is generally easier to detect a an outcome difference when your placebo patient population goes from 10% disease to 40% than if it goes from 40% to 70% (0% being no disease and 100% full blown Alzheimer’s).
posted by batou_ at 5:47 AM on August 10, 2010
In addition, most 'cures' for Alzheimer's coming down the pipeline are aimed at halting or slowing the progression of the disease. Obviously it would be beneficial to begin treating these people for the disease as early as possible when a therapeutic is on the market. However, it is also useful in clinical testing as well. As there is no direct way to look at neurodegeneration in the brain of a living person, secondary measurements, such as scores on memory tests, will be needed to determine if a therapeutic is successful. And in these scoring systems it is generally easier to detect a an outcome difference when your placebo patient population goes from 10% disease to 40% than if it goes from 40% to 70% (0% being no disease and 100% full blown Alzheimer’s).
posted by batou_ at 5:47 AM on August 10, 2010
You've got to put yourself in the place of someone who is of sound mind and body who has been told that a test that has 100% accuracy predicts that their sense of self, their sense of who they are, will start disappearing in ten years.
That's weird nasty shit. That's weird scifi. "Flowers for Algernon", anybody?
posted by twoleftfeet at 5:48 AM on August 10, 2010 [1 favorite]
That's weird nasty shit. That's weird scifi. "Flowers for Algernon", anybody?
posted by twoleftfeet at 5:48 AM on August 10, 2010 [1 favorite]
I don't know. We've all already been told that who we are, our identity and existence will vanish in no more than 50 or 100 years. I'd always thought that if we can handle that news, we can handle anything.
posted by vacapinta at 5:52 AM on August 10, 2010 [4 favorites]
posted by vacapinta at 5:52 AM on August 10, 2010 [4 favorites]
Right, well, everybody dies. But what if you start losing your mind years before you actually die? And, more importantly for this discussion, what if you knew about this a decade before it happened?
posted by twoleftfeet at 5:59 AM on August 10, 2010
posted by twoleftfeet at 5:59 AM on August 10, 2010
Not peer reviewed
???
It's an Original Contribution to Archives of Neurology. I'm not a neurologist, but I'm pretty sure that, in this case, "Original Contribution" = peer-reviewed. Unless it's like the Track II system in PNAS, but I'm not sure if Archives of Neurology has an equivalent to Track II, does it?
they draw some conclusions that aren't supported by the research
Such as? The journal has an impact factor of 6.31, which is pretty high, and appears to be one of the top journals withing the Neurology field. I'm keen to know what you've identified that the reviewers missed.
Call me when an independent team verifies the results.
Somebody could do that, but I suspect you're one of those people that would then turn around and say "Yawn. We already know that".
posted by kisch mokusch at 6:05 AM on August 10, 2010 [2 favorites]
???
It's an Original Contribution to Archives of Neurology. I'm not a neurologist, but I'm pretty sure that, in this case, "Original Contribution" = peer-reviewed. Unless it's like the Track II system in PNAS, but I'm not sure if Archives of Neurology has an equivalent to Track II, does it?
they draw some conclusions that aren't supported by the research
Such as? The journal has an impact factor of 6.31, which is pretty high, and appears to be one of the top journals withing the Neurology field. I'm keen to know what you've identified that the reviewers missed.
Call me when an independent team verifies the results.
Somebody could do that, but I suspect you're one of those people that would then turn around and say "Yawn. We already know that".
posted by kisch mokusch at 6:05 AM on August 10, 2010 [2 favorites]
Would you want to know that?
Hell yes. It means I can make sure my body dies with my brain, not some years afterwards, and my family doesn't have to go through the hell of seeing their dead loved one walking around, occasionally seeming to come to life, then dying again.
Maybe AD is bliss for the affected -- I don't know. But it's hell on everyone they love.
posted by eriko at 6:06 AM on August 10, 2010 [5 favorites]
Hell yes. It means I can make sure my body dies with my brain, not some years afterwards, and my family doesn't have to go through the hell of seeing their dead loved one walking around, occasionally seeming to come to life, then dying again.
Maybe AD is bliss for the affected -- I don't know. But it's hell on everyone they love.
posted by eriko at 6:06 AM on August 10, 2010 [5 favorites]
Again, medical tests and the disclosure thereof are the right and privilege of the person being tested. Some people will want to know, others will not. From a treatment standpoint, this could be the point where the person and the family say "YES, we will do experimental", or not. It could be the point where the person decides that, before their faculties diminish any further, that it's time to get their affairs in order. It could be the time they decide to scratch those last few items off their bucket list.
Alzheimers sucks. Bad. The saving grace of Alzheimers is that in the end, the good days just kind of stop and you're simply gracefully unaware of much of anything, including the id and the ego. The fear and the loneliness leading up to the end are pretty rough, but in the end it's usually way harder for the family than for the victim.
posted by TomMelee at 6:10 AM on August 10, 2010
Alzheimers sucks. Bad. The saving grace of Alzheimers is that in the end, the good days just kind of stop and you're simply gracefully unaware of much of anything, including the id and the ego. The fear and the loneliness leading up to the end are pretty rough, but in the end it's usually way harder for the family than for the victim.
posted by TomMelee at 6:10 AM on August 10, 2010
My grandmother also died of Alzheimer's and didn't recognize her own children. Dementia terrifies me, as a kid my parents used to take me to visit convalescent homes for church functions. All it accomplished was to give me a lifelong desire to never reach 60.
But why would anyone *not* want to know if they're going to get Alzheimer's? That makes no damned sense.
posted by mullingitover at 6:15 AM on August 10, 2010
But why would anyone *not* want to know if they're going to get Alzheimer's? That makes no damned sense.
posted by mullingitover at 6:15 AM on August 10, 2010
We just buried a family member who died after years of Alzheimer's. Physically and mentally, I am very much like this person, only about 40 years younger. I may have 20 years, 30 at most, before I drift off into the fog. Or maybe I'm wrong. Maybe I won't get it at all.
I want to know for sure and, for various reasons, I want my family to know.
I just wouldn't want my employers or insurers to know.
posted by pracowity at 6:17 AM on August 10, 2010 [5 favorites]
I want to know for sure and, for various reasons, I want my family to know.
I just wouldn't want my employers or insurers to know.
posted by pracowity at 6:17 AM on August 10, 2010 [5 favorites]
When my mind starts to go, I'm gonna have a big, week-long going away party, invite everyone I ever knew, and say my goodbyes. Then, I plan to take a massive dose of mescaline, wander off into the woods, and re-enter the food chain.
posted by Jon_Evil at 6:19 AM on August 10, 2010 [6 favorites]
posted by Jon_Evil at 6:19 AM on August 10, 2010 [6 favorites]
I'm probably older than the majority of you here. I would like to know if I am a likely candidate for Alzheimer's and sure as hell would want to know if that chance was 100%. I could therefore make some important life choices both for me and those I care about and those who care about me. What those choices are is a different discussion altogether.
posted by adamvasco at 6:28 AM on August 10, 2010 [2 favorites]
posted by adamvasco at 6:28 AM on August 10, 2010 [2 favorites]
But why would anyone *not* want to know if they're going to get Alzheimer's? That makes no damned sense.
Because you'd start seeing signs of it everywhere, and might possibly even become suicidal.
If you knew that your own death was coming soon, and would be slow and painful to both you, and everybody around you, wouldn't your outlook on life change just a bit (even if you had no idea when the symptoms would begin to set in)?
posted by schmod at 6:35 AM on August 10, 2010
Because you'd start seeing signs of it everywhere, and might possibly even become suicidal.
If you knew that your own death was coming soon, and would be slow and painful to both you, and everybody around you, wouldn't your outlook on life change just a bit (even if you had no idea when the symptoms would begin to set in)?
posted by schmod at 6:35 AM on August 10, 2010
Every time I turn around it's protein, killing people. When will the FDA get its shit together and ban this crap once and for all?
posted by Goofyy at 6:42 AM on August 10, 2010 [3 favorites]
posted by Goofyy at 6:42 AM on August 10, 2010 [3 favorites]
When my mind starts to go
Except you'll get out into the woods, feeling pretty good, and forget why you're there.
If you want to guarantee this, you have to contract with someone else to kill you if you are diagnosed.
posted by pracowity at 6:51 AM on August 10, 2010
Except you'll get out into the woods, feeling pretty good, and forget why you're there.
If you want to guarantee this, you have to contract with someone else to kill you if you are diagnosed.
posted by pracowity at 6:51 AM on August 10, 2010
The fear and the loneliness leading up to the end are pretty rough, but in the end it's usually way harder for the family than for the victim.
How could you know?
posted by Pope Guilty at 6:57 AM on August 10, 2010
How could you know?
posted by Pope Guilty at 6:57 AM on August 10, 2010
But why would anyone *not* want to know if they're going to get Alzheimer's? That makes no damned sense.
I am sure it makes me odd, but one of the most valuable pieces of life-advice I got was from a software engineering professor.
"Never test for an error condition you can't handle"
Meaning there's no point in determining a problem if there's nothing you can do about it. That doesn't mean you don't try to design to avoid the problem or minimize risks, but when you get to the point where you have no ability to impact anything what's the value of finding things out?
Several people above state they'd want to know in order to alter certain choices. I think schmod offers a good counterpoint to that. But even aside from that danger I think you'd need to have a much more concrete plan of action. What's the dividing line on dementia and memory loss where it's unacceptable on the other side?
We all fear losing out mental abilities but that's our response at or (hopefully :) 100% level. We don't WANT to be at 70% but would we necessarily be less happy then? Would our loved ones rather lose us before we start sundowning and are addled at the end of the day but still "ourselves" during the day?
There's clearly a point past which we're not really ourselves anymore and some of us have dealt with the constant hearbreak of seeing that in our loved ones. But how do we determine that point ourselves, ahead of time? I'm not sure I know how to do that myself and until I can I don't think I'd get any positive value out of a test.
posted by phearlez at 7:05 AM on August 10, 2010
I am sure it makes me odd, but one of the most valuable pieces of life-advice I got was from a software engineering professor.
"Never test for an error condition you can't handle"
Meaning there's no point in determining a problem if there's nothing you can do about it. That doesn't mean you don't try to design to avoid the problem or minimize risks, but when you get to the point where you have no ability to impact anything what's the value of finding things out?
Several people above state they'd want to know in order to alter certain choices. I think schmod offers a good counterpoint to that. But even aside from that danger I think you'd need to have a much more concrete plan of action. What's the dividing line on dementia and memory loss where it's unacceptable on the other side?
We all fear losing out mental abilities but that's our response at or (hopefully :) 100% level. We don't WANT to be at 70% but would we necessarily be less happy then? Would our loved ones rather lose us before we start sundowning and are addled at the end of the day but still "ourselves" during the day?
There's clearly a point past which we're not really ourselves anymore and some of us have dealt with the constant hearbreak of seeing that in our loved ones. But how do we determine that point ourselves, ahead of time? I'm not sure I know how to do that myself and until I can I don't think I'd get any positive value out of a test.
posted by phearlez at 7:05 AM on August 10, 2010
precursors to the "Ice-9" chemical sheets that characterize prion disease and (ostensibly) Alzheimer's
Amyloid-beta does aggregate to form oligomers of various size, and there is probably some degree of nucleation, wherein unaggregated protein is encouraged to change conformation to join already-formed plaques. However, amyloid-beta has nothing to do with prions aside from both being involved in neurodegenerative disease. Unlike prions, amyloid-beta is not "infectious".
Technically, AD can't be truly diagnosed until after you die
True. However, imaging techniques are in the works.
Or is the disease really just measured by intensity: everything above a certain threshold of dementia is Alzheimer's
There has been, traditionally, a very vague diagnostic line between Alzheimer's and other forms of dementia. They're often not practically distinguishable, and from a treatment perspective, there's currently no benefit in being able to do so.
Early and accurate detection of Alzheimer’s disease would be important for discovering new AD therapeutics
Bingo. The consensus is that drugs need to hit affected individuals in the early stages. You can't repair the damage of neurodegeneration, but you can potentially slow or stop the underlying processes before the damage is done. Reliable tests for early diagnosis will probably be essential to getting effective drugs through clinical trials.
posted by dephlogisticated at 7:18 AM on August 10, 2010 [2 favorites]
Amyloid-beta does aggregate to form oligomers of various size, and there is probably some degree of nucleation, wherein unaggregated protein is encouraged to change conformation to join already-formed plaques. However, amyloid-beta has nothing to do with prions aside from both being involved in neurodegenerative disease. Unlike prions, amyloid-beta is not "infectious".
Technically, AD can't be truly diagnosed until after you die
True. However, imaging techniques are in the works.
Or is the disease really just measured by intensity: everything above a certain threshold of dementia is Alzheimer's
There has been, traditionally, a very vague diagnostic line between Alzheimer's and other forms of dementia. They're often not practically distinguishable, and from a treatment perspective, there's currently no benefit in being able to do so.
Early and accurate detection of Alzheimer’s disease would be important for discovering new AD therapeutics
Bingo. The consensus is that drugs need to hit affected individuals in the early stages. You can't repair the damage of neurodegeneration, but you can potentially slow or stop the underlying processes before the damage is done. Reliable tests for early diagnosis will probably be essential to getting effective drugs through clinical trials.
posted by dephlogisticated at 7:18 AM on August 10, 2010 [2 favorites]
Metafilter: Can be 100% accurate.
Except when it's not.
posted by The Ultimate Olympian at 7:21 AM on August 10, 2010
Except when it's not.
posted by The Ultimate Olympian at 7:21 AM on August 10, 2010
One tiny detail: anybody here ever undergo a spinal tap? It ain't like taking a blood sample, folks. It's damned painful. And dangerous to boot.
My mother-in-law died of Alzheimer's. It was a hideous death--emotionally she was all over the place, confused, frightened, angry. It went on and on... I wouldn't wish such a fate on my worst enemy.
On the other hand, my own mother is sharp as a tack, but her body is failing in gruesome and frightening ways which she comprehends only too well. Is this really better?
My father, on the other hand, dropped dead in the driveway on a beautiful spring morning after checking the oil in his cars. It was over in an instant. He was 70. I'm hoping for a similar end... protracted departures terrify me.
posted by kinnakeet at 7:39 AM on August 10, 2010 [2 favorites]
My mother-in-law died of Alzheimer's. It was a hideous death--emotionally she was all over the place, confused, frightened, angry. It went on and on... I wouldn't wish such a fate on my worst enemy.
On the other hand, my own mother is sharp as a tack, but her body is failing in gruesome and frightening ways which she comprehends only too well. Is this really better?
My father, on the other hand, dropped dead in the driveway on a beautiful spring morning after checking the oil in his cars. It was over in an instant. He was 70. I'm hoping for a similar end... protracted departures terrify me.
posted by kinnakeet at 7:39 AM on August 10, 2010 [2 favorites]
We just buried a family member who died after years of Alzheimer's. Physically and mentally, I am very much like this person, only about 40 years younger. I may have 20 years, 30 at most, before I drift off into the fog. Or maybe I'm wrong. Maybe I won't get it at all.
The only form of Alzheimer's with a strong genetic component is early-onset Alzheimer's. If you had this, you and your family would probably already know.
Having one or more APOE4 alleles would put you at a higher risk of getting Alzheimer's than the general population, but unlike the mutations associated with early-onset AD, they are not determinative.
The biggest risk factor, really, is old age. As you grow into your 80s and 90s, your chance of getting AD approaches something like 50%.
posted by dephlogisticated at 7:40 AM on August 10, 2010
The only form of Alzheimer's with a strong genetic component is early-onset Alzheimer's. If you had this, you and your family would probably already know.
Having one or more APOE4 alleles would put you at a higher risk of getting Alzheimer's than the general population, but unlike the mutations associated with early-onset AD, they are not determinative.
The biggest risk factor, really, is old age. As you grow into your 80s and 90s, your chance of getting AD approaches something like 50%.
posted by dephlogisticated at 7:40 AM on August 10, 2010
Spinal taps aren't really that bad, until they screw one up. A botched spinal tap, now that is not fun. *fond memories*
I'd like to know if I were going to get Alzheimer's, just some advance notice, so I could get my affairs in order.
phearlez, remember, there's no error condition you can't handle with a call to
posted by adipocere at 8:16 AM on August 10, 2010
I'd like to know if I were going to get Alzheimer's, just some advance notice, so I could get my affairs in order.
phearlez, remember, there's no error condition you can't handle with a call to
die().posted by adipocere at 8:16 AM on August 10, 2010
Frankly I'd like to hear more about prions and whether some of the Alzheimer's cases are in fact prion disease. I've suspected for years that there's a correlation between factory-farmed beef and dementia in later life, and that perhaps moneyed interests (same as those that instilled that ridiculous federal testing ban on herds) from investigating this link. The few people I've known who had Alzheimer's also did have lots of beef/steak/burgers in their diet, and after reading about that guy who ate at Taco Bell every day and had an Alzheimer's diagnosis, it leaves me feeling uneasy. I'm not saying all Alzheimer's cases are in fact something else, but I think there's a lot of unknowns still.
posted by crapmatic at 8:34 AM on August 10, 2010
posted by crapmatic at 8:34 AM on August 10, 2010
Uh-oh. Too many hands in my comment. Sheesh.
The idiom you were looking for at the end was 'on the gripping hand'.
posted by FatherDagon at 8:35 AM on August 10, 2010
The idiom you were looking for at the end was 'on the gripping hand'.
posted by FatherDagon at 8:35 AM on August 10, 2010
The few people I've known who had Alzheimer's also did have lots of beef/steak/burgers in their diet
You mean they were among the 96.8% of Americans who eat meat? Well, that pretty much proves it.
posted by msalt at 9:19 AM on August 10, 2010 [1 favorite]
You mean they were among the 96.8% of Americans who eat meat? Well, that pretty much proves it.
posted by msalt at 9:19 AM on August 10, 2010 [1 favorite]
I would definitely want to know. And I can't help but think this would have saved my dad so much heartache when my grandmother was in such deep denial of what was happening to her. It was extremely difficult to take away her car, and later to move her into an assisted living home. And before taking her car, she was endangering other people's lives. I'm quite sure she was not alone as there is no efficient system for taking the driver's license of people who have been driving for fifty or sixty years but have diminished mental capacity.
The experience also motivated my dad to invest heavily in long term care insurance. I don't really know how it works, but I know he has put in place directions for exactly what he wants in case he ends up with Alzheimer's.
As for me, I think I might want some plans in place for the day when I no longer remembered my family or anyone around me...hopefully that will be a legal option in the future.
posted by thankyouforyourconsideration at 9:34 AM on August 10, 2010 [1 favorite]
The experience also motivated my dad to invest heavily in long term care insurance. I don't really know how it works, but I know he has put in place directions for exactly what he wants in case he ends up with Alzheimer's.
As for me, I think I might want some plans in place for the day when I no longer remembered my family or anyone around me...hopefully that will be a legal option in the future.
posted by thankyouforyourconsideration at 9:34 AM on August 10, 2010 [1 favorite]
The test "can be 100 percent accurate"? I don't get it. Either it is 100% accurate or it isn't.
posted by schoolgirl report at 9:39 AM on August 10, 2010
posted by schoolgirl report at 9:39 AM on August 10, 2010
My mother is currently suffering from some form of advancing dementia. When she was initially diagnosed with "mild cognitive impairment" I anxiously searched for some meaning or certain diagnosis. Would this turn into dementia, Alzheimer's, something else? After doing lots of reading (much prompted by other Alzheimers/Dementia threads here on Mefi) I came to the conclusion that it really doesn't matter. There are no cures and the drugs she's taking may be slowing the progression a little (she's on Namenda, she couldn't tolerate Exelon or others), I certainly wouldn't take her off them to see if there is a difference.
She's living at home with me. We are lucky in that she had long term care insurance that is helping to pay for full time care while I am at work. Currently she can dress herself and do basic self care--but I can forsee the day when those skills will disappear. Mom is aware of how much she is losing. She is embarassed and saddened. She is easily flustered and confused. I find the butter dish (with a cube of butter on it) in the dishwasher and dirty dishes in the refrigerator. She wants to help, but can't make the logical connections. She is starting to forget family members names, she sometimes thinks I'm her mother, and she is cold all the time because whatever is eating her brain has wrecked her thermostat.
Mom was a smart, curious, engaged and engaging person all her life who loved to travel. She got a degree in psychology in the mid 40's, took off after graduation and when to L.A. on her own and the in the early 50's decided to move to NYC--no money, no contacts. She moved into the "Y" and then, after meeting some friends, began to sublet apartments in Greenwich Village, went to clubs and attended a party were Carl Sandburg played the guitar. She moved west, took some more classes a Berkeley--decided to marry at 30 after knowing my dad for 3 months (they were married 39 years) and had two kids. She used to laugh when talking about my birth, because at 34, she was considered an "old" mother and the doctors kept bringing students by to see her. I am keeping all those stories and more now for her because they are disappearing.
I watched a dear friend die of ALS--seeing her lose control of more and more of her bodily functions while retaining her whip-sharp mind, was torture. But at least she knew what was going on. She could make decisions right up to the end and "speak" for herself using a voice synthesizer (the first macros she programmed were swear words). She was herself right up to the end. She could engage with friends and family and participated in choices about what kind of medical intervention she'd put up with.
Watching my Mom lose herself is horrible--particularly during those moments of clarity.
Her mother had dementia at the end as well. I did the 23 and me genetic analysis and they say I have a less than average chance of developing Alzheimer's. I certainly hope that is true. I've been looking into long term care insurance and am finding that it is quietly disappearing. I'm eligible for CalPers and they've done away with their long term care option. AARP has radically changed what they offer (I wouldn't be able to get anything close to the coverage Mom has through them). All that said, I'd still want to know.
My mom has taken terrific care of herself all her life. Excercised, ate well, saw her doctors regularly. She was 5' 7" and 120 all her life--eating mostly veggie, fish and very small amounts of red meat--so I don't think you could blame her "lifestyle."
Sorry to be all over the map, but obviously this stuff is on my mind a lot lately.
posted by agatha_magatha at 10:06 AM on August 10, 2010 [3 favorites]
She's living at home with me. We are lucky in that she had long term care insurance that is helping to pay for full time care while I am at work. Currently she can dress herself and do basic self care--but I can forsee the day when those skills will disappear. Mom is aware of how much she is losing. She is embarassed and saddened. She is easily flustered and confused. I find the butter dish (with a cube of butter on it) in the dishwasher and dirty dishes in the refrigerator. She wants to help, but can't make the logical connections. She is starting to forget family members names, she sometimes thinks I'm her mother, and she is cold all the time because whatever is eating her brain has wrecked her thermostat.
Mom was a smart, curious, engaged and engaging person all her life who loved to travel. She got a degree in psychology in the mid 40's, took off after graduation and when to L.A. on her own and the in the early 50's decided to move to NYC--no money, no contacts. She moved into the "Y" and then, after meeting some friends, began to sublet apartments in Greenwich Village, went to clubs and attended a party were Carl Sandburg played the guitar. She moved west, took some more classes a Berkeley--decided to marry at 30 after knowing my dad for 3 months (they were married 39 years) and had two kids. She used to laugh when talking about my birth, because at 34, she was considered an "old" mother and the doctors kept bringing students by to see her. I am keeping all those stories and more now for her because they are disappearing.
I watched a dear friend die of ALS--seeing her lose control of more and more of her bodily functions while retaining her whip-sharp mind, was torture. But at least she knew what was going on. She could make decisions right up to the end and "speak" for herself using a voice synthesizer (the first macros she programmed were swear words). She was herself right up to the end. She could engage with friends and family and participated in choices about what kind of medical intervention she'd put up with.
Watching my Mom lose herself is horrible--particularly during those moments of clarity.
Her mother had dementia at the end as well. I did the 23 and me genetic analysis and they say I have a less than average chance of developing Alzheimer's. I certainly hope that is true. I've been looking into long term care insurance and am finding that it is quietly disappearing. I'm eligible for CalPers and they've done away with their long term care option. AARP has radically changed what they offer (I wouldn't be able to get anything close to the coverage Mom has through them). All that said, I'd still want to know.
My mom has taken terrific care of herself all her life. Excercised, ate well, saw her doctors regularly. She was 5' 7" and 120 all her life--eating mostly veggie, fish and very small amounts of red meat--so I don't think you could blame her "lifestyle."
Sorry to be all over the map, but obviously this stuff is on my mind a lot lately.
posted by agatha_magatha at 10:06 AM on August 10, 2010 [3 favorites]
Yep, I'd want to know.
My grandfather died of it. One of the last memories I had of him was him believing I was his brother Pete, who was going to beat him up. It was so not cool. I want to spare my wife and kids that sort of problem as much as possible.
posted by swimming naked when the tide goes out at 11:07 AM on August 10, 2010
My grandfather died of it. One of the last memories I had of him was him believing I was his brother Pete, who was going to beat him up. It was so not cool. I want to spare my wife and kids that sort of problem as much as possible.
posted by swimming naked when the tide goes out at 11:07 AM on August 10, 2010
I remember an episode of Family Ties where a beloved aunt came to visit and the Keaton family was surprised but pleased. She'd insisted that she'd called and told them she was coming, however. Other odd occurances prompt them to take Auntie to the doctor, and many tests later it is revealed that she was in the early stages of Alzheimer's Disease. I remember crying at the end of the ep when Auntie (who'd been sort of the family historian) gave Mrs. Keaton all her treasured photo albums and other heirlooms. "Do you really want to part with all this?" she was asked. Her reply broke my heart: "I can't bear to look at them now knowing that in a few years I won't recognize anyone in those pictures."
My beloved mother-in-law passed away earlier this year after an eight-year decline with what was first diagnosed as early onset Alzheimer's and more recently determined to be Lewy-Body Dementia. She hadn't recognized any family members for the past few years, was unable to care for herself and hallucinated frequently. Every time Mr. Adams and I stayed with her (to give my father-in-law a brief "vacation"), all Mr. Adams could repeat was "Mom would not want to live this way if she understood what was happening." I definitely think that if I got a confirmation via spinal tap or whatever test that "yep, it will happen to you eventually" I'd start stockpiling the Valium or Oxycodone or whatever you can take a handful of and go to sleep forever.
posted by Oriole Adams at 11:16 AM on August 10, 2010 [3 favorites]
My beloved mother-in-law passed away earlier this year after an eight-year decline with what was first diagnosed as early onset Alzheimer's and more recently determined to be Lewy-Body Dementia. She hadn't recognized any family members for the past few years, was unable to care for herself and hallucinated frequently. Every time Mr. Adams and I stayed with her (to give my father-in-law a brief "vacation"), all Mr. Adams could repeat was "Mom would not want to live this way if she understood what was happening." I definitely think that if I got a confirmation via spinal tap or whatever test that "yep, it will happen to you eventually" I'd start stockpiling the Valium or Oxycodone or whatever you can take a handful of and go to sleep forever.
posted by Oriole Adams at 11:16 AM on August 10, 2010 [3 favorites]
Re: Alzheimer's and Prions. Beef is unlikely to give you Alzheimer's because 1)cows don't get the disease and 2) in spite of a lot of research, Alzheimer's has not been transmitted between organisms. This not to say that it couldn't, for instance, you might imagine that if you had a brain transplant you might get the disease. And if that is true, than how about a half-brain transplant? or a tiny fraction? That's the problem with classifying something as "infectious" or "non-infectious", we may not have found the correct circumstances. For instance, Mountain lions can get prion diseases ( I believe that one died at the London Zoo from BSE tainted beef), but mountain lions in some sections of Colorado are getting 90% of their diet from prion infected (chronic wasting disease) deer and elk, without getting sick. And these deer and elk are passing to each other via some mechanism that doesn't involve carnivorism/cannibalism.
posted by 445supermag at 11:45 AM on August 10, 2010
posted by 445supermag at 11:45 AM on August 10, 2010
mullingitover: Dementia terrifies me, as a kid my parents used to take me to visit convalescent homes for church functions. All it accomplished was to give me a lifelong desire to never reach 60.
The good news is, those are the worst (where worst means protracted dementia) cases. Most people don't end up in nursing homes. They should really tell kids that. They told me when I volunteered as a teen and I was very grateful for it.
posted by callmejay at 12:28 PM on August 10, 2010
The good news is, those are the worst (where worst means protracted dementia) cases. Most people don't end up in nursing homes. They should really tell kids that. They told me when I volunteered as a teen and I was very grateful for it.
posted by callmejay at 12:28 PM on August 10, 2010
Sign me up for this test. Two of my grandparents had it, and I worked at a nursing home caring for at least three women who had advanced stages of it.
Of the women I cared for, one could at least stand and shuffle around, but her eyes were closed and she would run into things, and you had to be really careful she didn't slip out the door when you opened it to go in to change her diaper. Her face was a grimace of pain, constantly. She did not recognize relatives at all, and did not speak but made a slight shush-shush mumbly noise sometimes.
The second woman could not stand, also had her eyes closed, and also did not speak. Her face was an even worse grimace of pain.
The third could not stand or walk, but she had her eyes open, and would smile sometimes, and speak, but she spoke only in nonsense words, and laughed and smiled at nothing, or things only she could see. She could not recognize her family at all.
Only one of these could be said to have any quality of life at all (in my opinion of course), and even that one suffered a fate worse than I would wish on an enemy. The first and second ones, basically it felt to me that we were just keeping a body alive at that point. And why? Because the checks keep coming in, and we are too squeamish in this society to deal with assisted suicide.
I will never let myself become like that. I have often stated that if I get old and lose my way to the grocery store twice, I will have to end it. I get one freebie. That's it. I will check out before I get to the point where I cannot recognize my daughter. I love her too much to put her through that.
I hope that if this test is not as great as they say it is, that they come up with one that is better. I know I really, really want to know if I am going to face this particular monster.
posted by marble at 2:36 PM on August 10, 2010 [1 favorite]
Of the women I cared for, one could at least stand and shuffle around, but her eyes were closed and she would run into things, and you had to be really careful she didn't slip out the door when you opened it to go in to change her diaper. Her face was a grimace of pain, constantly. She did not recognize relatives at all, and did not speak but made a slight shush-shush mumbly noise sometimes.
The second woman could not stand, also had her eyes closed, and also did not speak. Her face was an even worse grimace of pain.
The third could not stand or walk, but she had her eyes open, and would smile sometimes, and speak, but she spoke only in nonsense words, and laughed and smiled at nothing, or things only she could see. She could not recognize her family at all.
Only one of these could be said to have any quality of life at all (in my opinion of course), and even that one suffered a fate worse than I would wish on an enemy. The first and second ones, basically it felt to me that we were just keeping a body alive at that point. And why? Because the checks keep coming in, and we are too squeamish in this society to deal with assisted suicide.
I will never let myself become like that. I have often stated that if I get old and lose my way to the grocery store twice, I will have to end it. I get one freebie. That's it. I will check out before I get to the point where I cannot recognize my daughter. I love her too much to put her through that.
I hope that if this test is not as great as they say it is, that they come up with one that is better. I know I really, really want to know if I am going to face this particular monster.
posted by marble at 2:36 PM on August 10, 2010 [1 favorite]
I had a psychology professor with a family history of Alzheimer’s and had to deal with her own mother's Alzheimer’s. During our discussion of the topic, she casually mentioned that she already had plan to beat it. Over her fireplace she had placed a tasteful looking vase/urn with lid and inside, it was filled with sleeping pills. A small sign next to the vase read, "If you forget what this is for, swallow everything you find inside."
What a way to kill a class discussion.
posted by Cog at 3:12 PM on August 10, 2010 [8 favorites]
What a way to kill a class discussion.
posted by Cog at 3:12 PM on August 10, 2010 [8 favorites]
I'd go for the test. And if I was in danger, I'd monitor myself real close, hoping I'd recognize when it was time to go catch a train to some place far, far away.
posted by Goofyy at 9:47 PM on August 10, 2010
posted by Goofyy at 9:47 PM on August 10, 2010
Another one whose family always has long, long, long protracted deaths, frequently from dementia. I'd like to know an estimated time of mental decline so I could plan out a way to take myself out before my brain turns to jelly. I am sick to death of watching everyone's brains rot, I sure as hell don't want to cause someone else to go through what I have over and over and over and bloody over again.
posted by jenfullmoon at 8:15 PM on August 11, 2010
posted by jenfullmoon at 8:15 PM on August 11, 2010
Rare Sharing of Data Led to Results on Alzheimer’s
posted by homunculus at 2:45 PM on August 13, 2010
posted by homunculus at 2:45 PM on August 13, 2010
Rich people don't want it, therefore the Tea Party doesn't want it. No shock.
posted by Pope Guilty at 2:50 PM on August 13, 2010
posted by Pope Guilty at 2:50 PM on August 13, 2010
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It's such a fine line between stupid, and clever.
posted by three blind mice at 3:02 AM on August 10, 2010 [1 favorite]