12 ms·
Having Alzheimer’s at 38 (2015)
- fnord123 8y agoThis topic is touched upon briefly in the excellent game / walking simulator "Firewatch".
- creep 8y agoThank you, the trailer looks fantastic.
- equalunique 8y agoI don't work for Steam or the creators of Firewatch, but here's the link: https://store.steampowered.com/app/383870/Firewatch/ https://store.steampowered.com/app/383870/Firewatch/
- tomrod 8y agoHow 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.
- cyri 8y agoThere is an excellent German ZDF documentary about Alzheimer/Dementia at young people: https://www.zdf.de/dokumentation/37-grad/37-das-grosse-vergessen-100.html https://www.zdf.de/dokumentation/37-grad/37-das-grosse-verge...
- 39283 8y agoDiseases 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.
- Retric 8y agoThe 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.
- 39283 8y agoYep. For MS in particular you can get very specific damage that can't be mitigated by other parts of the brain, but in general the amount of malleability hides a lot of impact until later.
- ryanmercer 8y agoThis is the kind of stuff that keeps me up at night. I really hope we can make breakthroughs with these sorts of things soon.
- benjohnson 8y agoBonus: sleep deprivation is thought to cause brain damage.
- tormeh 8y agoIf one of the functions of sleep is to remove toxins in the brain then this essentially follows.
- eebynight 8y agoI 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.
- acangiano 8y agoReading 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.
- iopuy 8y agoDiabetes type 3!?!?! I have never heard this but I'll sure as he'll keep this in mind now.
- cowmoo728 8y agohttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045545/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3045545/ "Epidemiological and basic science evidence suggest a possible shared pathophysiology between type 2 diabetes mellitus (T2DM) and Alzheimer's disease (AD). It has even been hypothesized that AD might be ‘type 3 diabetes’. The present review summarizes some of the evidence for the possible link, putative biochemical pathways and ongoing clinical trials of antidiabetic drugs in AD patients." If they are linked by a common factor, it makes me scared to think of how many alzheimer's patients there will be in 40 years.
- lisper 8y ago> Alzheimer is sometimes referred to as diabetes type 3. Just because it is referred to that way doesn't mean that it is actually the case. The hypothesis that AD=Diabetes has been around for at least ten years [1]. If it were true, I would have expected to see some results by now about how diabetes interventions can slow the advance of AD, if not prevent and/or reverse it entirely. AFAICT there have been no such results. That casts the hypothesis into serious doubt IMHO. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/
- mkrecny 8y agoWe're only now just waking up to the reality that type-2 diabetes can be reversed w/ carbohydrate restriction, even though the data to support that has been around for decades. I don't think a decade is an unusual latency for the medical institution to lay idle on.
- asdf_123321 8y agoNot specificly linked to alzheimers but id note three things : > famous celebrity `chipchan` just died from cancer, she also had symptoms like schizophrenia... symptoms of schizo like claimed she was being followed and hit with energy weapons, lots of mental distress, mental pain, mental fog etc > i cured my schizophrenia with hot tubbing and ice baths. google ice bath athlete to get the idea. i also had cancer > it could be food related imho, i suspect icebath are taking off among beef eaters. you can test for yourself eat grapes, limes and coconut for a week and watch how sick you get. my video explaining, it may be worth a watch if u have cancer or mental issues https://www.youtube.com/watch?v=fRWuRpn1d4I&t=2s https://www.youtube.com/watch?v=fRWuRpn1d4I&t=2s
- hackandtrip 8y agoResearch 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".
- melling 8y agoVery little is spent on Alzheimer’s research compared to other diseases: https://www.aarp.org/health/brain-health/info-2015/alzheimers-research.html 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.
- hackandtrip 8y agoAbsolutely; I don't know what type of effort we could do though. I think that sharing stats like these [0] can help. "Scaring" people with numbers can be a path. [0] https://www.alz.org/alzheimers-dementia/facts-figures https://www.alz.org/alzheimers-dementia/facts-figures
- asveikau 8y agoHmm, a while ago I was looking into medical research nonprofits accepting donations and one of them I gave to was Alzheimer's Association. No family history here, was just feeling altruistic about helping out for various causes. Seeing your comment makes me feel good that this is one of the ones I chose. https://alz.org https://alz.org if anyone else is so inclined.
- equalunique 8y agoMaybe a sign of positive change? I have noticed Alzheimers disease lately getting more attention from the US legislative body, via C-SPAN: From March 23, 2018: https://www.c-span.org/video/?442595-4/washington-journal-dr-keith-fargo-discusses-alzheimers-disease https://www.c-span.org/video/?442595-4/washington-journal-dr... From June 19, 2018: https://www.c-span.org/video/?447278-1/marcia-gay-harden-testifies-senate-hearing-alzheimers-disease https://www.c-span.org/video/?447278-1/marcia-gay-harden-tes...
- symmitchry 8y agoThis 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.
- linkmotif 8y agoNot 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.
- creep 8y agoI have told my partner that if I get dementia, I would like to die. I didn't say he should kill me, but I hope that he wouldn't have to.
- 8y ago
- dang 8y agoDiscussed at the time: https://news.ycombinator.com/item?id=10179161 https://news.ycombinator.com/item?id=10179161
- delbel 8y agoThere's a lot of scientific evidence that medical marijuana can remove beta-amyloid build up in the brain. There is also evidence that unknown spirochete diseases can cause Alheimer like symptoms. There is also cause for concern that bio-pesticides that are GMO based are can infect the brain and cause symptoms like this as well. I would definitely never give up if this happened to me. Antibiotics, antiparasite, diet changes, small microdosages of CBD/THC based marijuana strains, neuroprotective compounds, etc --- all through a process of elimination with a journal. I hope Jo or somebody like Jo reads my comment and tries these things.
- jack9 8y ago> There's a lot of scientific evidence I would like to see this. Do you have a link to a peer reviewed study?
- jrace 8y agoWhile I cannot commet on whether or not these are peer reviewed, this may provide some insight https://www.alzheimers.net/6-15-15-effects-of-medical-marijuana-on-alzheimers/ https://www.alzheimers.net/6-15-15-effects-of-medical-mariju... https://www.ncbi.nlm.nih.gov/pubmed/17140265 https://www.ncbi.nlm.nih.gov/pubmed/17140265 https://www.salk.edu/news-release/cannabinoids-remove-plaque-forming-alzheimers-proteins-from-brain-cells/ https://www.salk.edu/news-release/cannabinoids-remove-plaque...
- yeeeeeeeeee 8y agoThe Pentagons really drove home what it is like to have this. It must be so hard...
- creep 8y agoGoddammit. I am going to cry. This was a wonderful piece. Empathy in every detail, while still being open enough to satisfy a reader's curiosity. It read like a book and I accidentally began to feel a kinship with the characters.
- Jaruzel 8y agoYup me too. Both my grandfathers had Alzheimer's. I don't talk to my mother anymore (who is 68) so I don't know how she is doing, and my father (70) seems to be OK so far, but he's always been a bit 'scatty', so early signs would probably be hard to detect. I'm in my mid 40s but I've long had a lingering fear that Alzheimer’s will get me at some point. I find it absolutely terrifying at the prospect of losing who I am. On and off I tinker with ways of capturing who I am in some way, or regularly think of ways I could invent support devices to assist me when my brain goes to mush. I am definitely preoccupied with this topic. I doubt though, that I'll ever come up with anything to help; I'm simply not clever enough. I am less intelligent today, than I was yesterday. The anti-depression drugs probably don't help in that regard either. This is why I come to HN every day... The richness of the topics covered, and the knowledge that the comments section is a safe place to share... Please pardon my self-reflection.
- victor106 8y agohttp://news.bbc.co.uk/2/hi/health/8492918.stm http://news.bbc.co.uk/2/hi/health/8492918.stm Tldr:- Didn’t find any specific gene linkage. Less stress, low cholesterol and the other standard healthy metrics seems to make a difference.
- partycoder 8y agoThere is a link between Alzheimer and fungal infections in the brain and a compromised blood/brain barrier.
- FlyingSideKick 8y agoMy 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.
- entropy_ 8y agoMy 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
- mattigames 8y agoYeah 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.
- sasaf5 8y agoForcing people to do things because they were diagnosed will only make people avoid being diagnosed.
- pmyteh 8y agoHuntington's normally first appears in a family when the carrier is late in life, so it's really not that simple. Not uncommon to already have grandkids before you know. The average age of onset reduces as the generations go on. And FWIW it has a spontaneous occurrence rate, so even if all known carriers have no offspring it wouldn't eradicate it.
- ddingus 8y agoI 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.
- aurbano 8y agoHave you read “Buddhism, plain and simple”? We share many ideas and have gone through a similar awakening. As most of the people commenting here, I wish we could all gather around a coffee table to discuss that book and others... Please, if you haven’t read it, consider doing so :)
- ddingus 8y agoI will. Have not. Thanks. That gathering would be epic, very high value. I was touched by this. Made me think of things I had set aside. A little dismayed I got negative votes. Was just sharing. Maybe unwise, but like I said, Jo and what he is experiencing... Yeah, a gathering to just chat, share, good, bad, would have high value.
- vfc1 8y agoIt's the food. Alzheimer looks like a form of arteriosclerosis of the brain. In autopsies to Alzheimer patient brains we can see the small arteries of the brain clogged with fat and colestrol, here is a video showing this with pictures - https://youtu.be/WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&t=90 https://youtu.be/WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7... If plaque building in main arteries can cause heart atacks, the exact same blood is getting to the brain - imagine what it will do there. If anyone here has Alzheimer in the family and would like to preventively change their diet, have a look at this other video from that playlist - https://www.youtube.com/watch?v=t-noCw4LsY4&list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&index=11 https://www.youtube.com/watch?v=t-noCw4LsY4&list=PL5TLzNi5fY... In summary, there are strong indications that a whole food plant based diet low in fat is the best-known way to prevent Alzheimer's and even alleviate the symptoms. Hope for Alzheimer Patients: https://nutritionfacts.org/2017/12/26/hope-for-alzheimers-patients/ https://nutritionfacts.org/2017/12/26/hope-for-alzheimers-pa... It's important that the diet is not only plant based, but low in fat as for example there is a lot of Alzheimer's in India where a large part of the population is vegetarian. This has been linked to ghee (clarified butter), as per this video: Oxidized Cholesterol as a Cause of Alzheimers Disease - https://www.youtube.com/watch?v=Y15yI5LLlNY https://www.youtube.com/watch?v=Y15yI5LLlNY
- throwaway1909 8y agoYour conspiracy theory approach to science backed by Youtube videos is obnoxious. The cause of Alzheimer's is still unknown, but most likely related to amyloid plaques. Diet may contribute. Or it may not. In a 38 year old, it's genetics. Period.
- ajaxaddicted 8y agoPeriod. So ignorant. At least give those videos a look. There is actual science behind it. Diet contributes big time.
- hk__2 8y ago> Period. So ignorant. At least give those videos a look. There is actual science behind it You may want to post peer-reviewed research papers backing those videos instead. It’s a lot easier to review.
- pimmen 8y agoMy 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.
- rammy1234 8y ago“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.
- Beefin 8y agoDr 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
- abledon 8y agoHave you looked into the phenomena of grounding (making the electric potential between your body and the earth 0) as a mechanism for reducing inflammation?
- dannyw 8y agoFor those who want to interpret their own results: Search your report for rs429358; also reported as gs246. (T; T) is the normal variant. (C; C) or (C; T) is estimated to increase your chances by "12x for late-onset Alzheimer's and 61x for early-onset disease"
- mkam039 8y agoIt's difficult to find any scientific paper's by these prominent researchers. Where would one find those? As far as I know, there is no concrete evidence that proves any causal relationship between inflammation and neurodegenation.
- jayzee44 8y agoMaybe no evidence of a causal relationship, but AD is characterized by neuroinflammation, as are many other neurodegenerative diseases.
- RickJWagner 8y agoMy wife's friend lost both her mother and father to alzheimer's. She is absolutely terrified about it. It's an awful disease. We should make it a top priority to put an end to it.
- abledon 8y agoCommon 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