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Having Alzheimer’s at 38 (2015)

337 点作者 onuralp将近 7 年前

23 条评论

entropy_将近 7 年前
My wife&#x27;s family has a different disease running through it, though one with very similar outcomes. Huntington&#x27;s.<p>It&#x27;s genetic and dominant (so a parent having it means 50&#x2F;50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer&#x27;s and Parkinson&#x27;s (both dementia and motor control issues).<p>Her uncle was diagnosed at 38, her mother at 50. I wasn&#x27;t around for the first one, but have been there for most of the latter case (her mother is now 60).<p>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.<p>&quot;You pick up the phone, you talk to your mom, you don’t have to say anything. It’s a mom&quot;. My wife had to go through discovering motherhood without that and she still can&#x27;t adjust to the fact that her mother is not the same person anymore, it&#x27;s a constant heartbreak.<p>I&#x27;m just glad there&#x27;s a simple test for this and that both my wife and her one brother tested negative. So I&#x27;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
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FlyingSideKick将近 7 年前
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.
hackandtrip将近 7 年前
Research is making really big step, we all hope for a cure of this and other plague that are ruining our lives.<p>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&#x27;s happening with cancer, but Alz make everything different: the sick can&#x27;t make his voice heard, he has no knowledge of what&#x27;s happening, family, with an enormous economic sacrifice, try to take care of the sick, and their voices become silent.<p>I&#x27;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 &quot;Terry Pratchett: Choosing to Die&quot;.
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creep将近 7 年前
Goddammit. I am going to cry.<p>This was a wonderful piece. Empathy in every detail, while still being open enough to satisfy a reader&#x27;s curiosity. It read like a book and I accidentally began to feel a kinship with the characters.
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Beefin将近 7 年前
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.<p>Alzheimer’s is definitely terrifying but leaps and bounds have been made in prevention.<p>I’m working on a tool to help monitor and track some of these preventative measures: Meports.com
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cyri将近 7 年前
There is an excellent German ZDF documentary about Alzheimer&#x2F;Dementia at young people: <a href="https:&#x2F;&#x2F;www.zdf.de&#x2F;dokumentation&#x2F;37-grad&#x2F;37-das-grosse-vergessen-100.html" rel="nofollow">https:&#x2F;&#x2F;www.zdf.de&#x2F;dokumentation&#x2F;37-grad&#x2F;37-das-grosse-verge...</a>
39283将近 7 年前
Diseases which affect your brain are quite bizarre in terms of quantifying the effects. I have some lesion damage from multiple sclerosis, but there&#x27;s very little information available on what effects, if any I&#x27;d be able to identify. It&#x27;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).<p>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.
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ryanmercer将近 7 年前
This is the kind of stuff that keeps me up at night. I really hope we can make breakthroughs with these sorts of things soon.
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pimmen将近 7 年前
My grandfather is 79 and got his alzheimer&#x27;s diagnosis this fall. He&#x27;s lived a long, absolutely amazing life and inspired me to become an engineer. He&#x27;s the kind of man that if he wants something done, he learns what to do and does it.<p>My grandfather lived his life, so I understand it&#x27;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&#x27;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.<p>I remember reading the Wikipedia article about Claude Shannon and crying a few years ago. He also died of alzheimer&#x27;s and in his last days, he&#x27;d forgotten the profound impact he made on the world. I just can&#x27;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&#x27;s a way to go that nobody deserves.
fnord123将近 7 年前
This topic is touched upon briefly in the excellent game &#x2F; walking simulator &quot;Firewatch&quot;.
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rammy1234将近 7 年前
“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.
RickJWagner将近 7 年前
My wife&#x27;s friend lost both her mother and father to alzheimer&#x27;s. She is absolutely terrified about it.<p>It&#x27;s an awful disease. We should make it a top priority to put an end to it.
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dang将近 7 年前
Discussed at the time: <a href="https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=10179161" rel="nofollow">https:&#x2F;&#x2F;news.ycombinator.com&#x2F;item?id=10179161</a>
eebynight将近 7 年前
I see someone is subscribed to Peter Attia&#x27;s Newsletter.<p>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将近 7 年前
How very sad. I don&#x27;t have the same genetic issue he does, though I do worry about this disease and it&#x27;s frequency in my family tree. Frankly, I hope for a cure.
symmitchry将近 7 年前
This sounds insane to say, if you haven&#x27;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.
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ddingus将近 7 年前
I have tears. I fear this more than I realized before.<p>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.<p>I remember the day I woke up, and by that, I mean the difference between being that kid, experiencing, and who I am today.<p>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.<p>Was never the same.<p>That year was the beginning of me, and while I remember a lot from my very early years, those memories aren&#x27;t like the ones I have later on.<p>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?<p>The idea of &quot;me&quot; being a fragile state, a pattern that tends to endure, provoked a sense of guardianship. I am in charge of me, nobody else.<p>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?<p>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.<p>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.<p>To have it just degrade, fade away despite ehat I know must be a painful struggle...<p>We need to do the work on this thing. It could be any of us, and ours facing this quiet horror.<p>Jo is a lucky person. He has someone who knows his story, who can take him back, connect.
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acangiano将近 7 年前
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&#x27;t have helped Jo, but it might save quite a few of us from this scary outcome.
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partycoder将近 7 年前
There is a link between Alzheimer and fungal infections in the brain and a compromised blood&#x2F;brain barrier.
victor106将近 7 年前
<a href="http:&#x2F;&#x2F;news.bbc.co.uk&#x2F;2&#x2F;hi&#x2F;health&#x2F;8492918.stm" rel="nofollow">http:&#x2F;&#x2F;news.bbc.co.uk&#x2F;2&#x2F;hi&#x2F;health&#x2F;8492918.stm</a><p>Tldr:- Didn’t find any specific gene linkage. Less stress, low cholesterol and the other standard healthy metrics seems to make a difference.
yeeeeeeeeee将近 7 年前
The Pentagons really drove home what it is like to have this. It must be so hard...
delbel将近 7 年前
There&#x27;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&#x2F;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.
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vfc1将近 7 年前
It&#x27;s the food. Alzheimer looks like a form of arteriosclerosis of the brain.<p>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 - <a href="https:&#x2F;&#x2F;youtu.be&#x2F;WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&amp;t=90" rel="nofollow">https:&#x2F;&#x2F;youtu.be&#x2F;WhtpyVhlu28?list=PL5TLzNi5fYd8E6GHQcmIWYGE7...</a><p>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.<p>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 - <a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=t-noCw4LsY4&amp;list=PL5TLzNi5fYd8E6GHQcmIWYGE7vDP97529&amp;index=11" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=t-noCw4LsY4&amp;list=PL5TLzNi5fY...</a><p>In summary, there are strong indications that a whole food plant based diet low in fat is the best-known way to prevent Alzheimer&#x27;s and even alleviate the symptoms.<p>Hope for Alzheimer Patients: <a href="https:&#x2F;&#x2F;nutritionfacts.org&#x2F;2017&#x2F;12&#x2F;26&#x2F;hope-for-alzheimers-patients&#x2F;" rel="nofollow">https:&#x2F;&#x2F;nutritionfacts.org&#x2F;2017&#x2F;12&#x2F;26&#x2F;hope-for-alzheimers-pa...</a><p>It&#x27;s important that the diet is not only plant based, but low in fat as for example there is a lot of Alzheimer&#x27;s in India where a large part of the population is vegetarian.<p>This has been linked to ghee (clarified butter), as per this video:<p>Oxidized Cholesterol as a Cause of Alzheimers Disease - <a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=Y15yI5LLlNY" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=Y15yI5LLlNY</a>
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