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.
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".
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.
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...
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
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?
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.
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.
“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.
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 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.
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.
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.
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).
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.
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.
- 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?
[+] [-] entropy_|7 years ago|reply
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
[+] [-] mattigames|7 years ago|reply
[+] [-] mseidl|7 years ago|reply
[+] [-] FlyingSideKick|7 years ago|reply
[+] [-] hackandtrip|7 years ago|reply
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".
[+] [-] melling|7 years ago|reply
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.
[+] [-] creep|7 years ago|reply
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.
[+] [-] Jaruzel|7 years ago|reply
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.
[+] [-] Beefin|7 years ago|reply
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
[+] [-] mkam039|7 years ago|reply
As far as I know, there is no concrete evidence that proves any causal relationship between inflammation and neurodegenation.
[+] [-] dannyw|7 years ago|reply
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"
[+] [-] abledon|7 years ago|reply
[+] [-] cyri|7 years ago|reply
[+] [-] 39283|7 years ago|reply
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.
[+] [-] Retric|7 years ago|reply
[+] [-] ryanmercer|7 years ago|reply
[+] [-] benjohnson|7 years ago|reply
[+] [-] pimmen|7 years ago|reply
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.
[+] [-] fnord123|7 years ago|reply
[+] [-] rammy1234|7 years ago|reply
[+] [-] RickJWagner|7 years ago|reply
It's an awful disease. We should make it a top priority to put an end to it.
[+] [-] abledon|7 years ago|reply
[+] [-] dang|7 years ago|reply
[+] [-] eebynight|7 years ago|reply
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.
[+] [-] tomrod|7 years ago|reply
[+] [-] symmitchry|7 years ago|reply
[+] [-] linkmotif|7 years ago|reply
[+] [-] canada_dry|7 years ago|reply
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.
[+] [-] ddingus|7 years ago|reply
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.
[+] [-] acangiano|7 years ago|reply
[+] [-] lisper|7 years ago|reply
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/
[+] [-] dnautics|7 years ago|reply
[+] [-] gnarcoregrizz|7 years ago|reply
1. https://www.ncbi.nlm.nih.gov/pubmed/19664276
2. https://www.epilepsy.com/learn/treating-seizures-and-epileps...
[+] [-] iopuy|7 years ago|reply
[+] [-] avip|7 years ago|reply
[+] [-] coldseattle|7 years ago|reply
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.
[+] [-] Pica_soO|7 years ago|reply
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?
[+] [-] partycoder|7 years ago|reply
[+] [-] victor106|7 years ago|reply
Tldr:- Didn’t find any specific gene linkage. Less stress, low cholesterol and the other standard healthy metrics seems to make a difference.