思考与写作site.macleans.ca
38 岁患上阿尔茨海默病
Having Alzheimer’s at 38 (2015)
2015 — 2018，它一次次回到首页
黑点是上首页（≥ 50 分）的那次投稿，空心点是没冲上去的投稿，点越大分数越高。
导读
Maclean's 的一篇长篇特稿，讲述一位在 38 岁被确诊为早发性阿尔茨海默病的主人公及其家人的经历：从最初被误诊为抑郁与焦虑，到逐渐失去自理能力，以及照护给家庭带来的沉重负担。文章以细节和大量人物视角呈现这种疾病如何一点点带走一个人。
为什么经久不衰：它把一种常被当作“老年病”的疾病拉回到中年人的生活中，写法克制而充满共情；无论从医学认知还是照护伦理的角度看，多年后读来依然刺痛而有用。
HN 评论精选
我妻子家族里流传的是另一种病，结局却非常相似——亨廷顿舞蹈症。它是显性遗传，父母一方患病，子女就有 50% 的概率。平均发病年龄是 38 岁，症状混合了阿尔茨海默病和帕金森病，既有痴呆也有运动控制问题。她的舅舅 38 岁确诊，她的母亲 50 岁确诊（现在 60 岁）。看着你爱的人在眼前一点点衰败、一周一周变成另一个人，是人所能经历的最可怕的事之一。文里那句“你拿起电话，和妈妈聊天，你什么都不用说，那就是妈妈”——我妻子是在失去这种体验的情况下学着做母亲的，她至今仍无法接受母亲已不再是同一个人，那是持续不断的心碎。所幸这种病有简单的检测，我妻子和她一个兄弟的结果都是阴性，我不必经历作者所经历的一切；但等待结果的那两个月，光是想想就几乎把我击垮。
entropy_查看英文原文
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
我母亲 57 岁开始出现痴呆症状。看着这样一位才华横溢、爱冒险、见多识广的女性发生变化，非常难受。她还是她，但如今成了习惯的动物，每天同一时间做同样的事；离开熟悉的街区、去新的餐馆或公园都会让她不适。她曾经喜欢去肯尼亚、葡萄牙、印度尼西亚旅行，现在只想待在附近。她本来还是个不错的雕塑者，为了养育五个孩子放弃了，如今孩子们都离家了，她却再也没有能力重拾旧爱。我们的对话也一年比一年短、一年比一年浅。作为儿子，这很难承受。而且我始终害怕自己也会患病，因为我祖母也有阿尔茨海默病。也许未来 AI 或其他工具能帮助开发出阻止甚至逆转这种疾病的药物，只能祈祷了。
FlyingSideKick查看英文原文
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.
> 他去看了家庭医生，想要答案。他大学时曾被诊断为抑郁和焦虑，于是这次医生也把重点放在这上面，开了抗抑郁药。 这是懒医生的默认套路。我知道，因为我陪妻子经历过类似的事，只是病不同。当时我们就知道那个抑郁诊断是胡扯，立刻去寻求第二、第三意见，弄清到底出了什么问题。
JonoBB查看英文原文
> He visited his family doctor, looking for answers. He had been diagnosed with depression and anxiety in university, and now the doctor focused on that and prescribed anti-depressants. This is the fall-back position for lazy doctors. I know because I've been through it with my wife and a different condition. We knew at the time that the diagnosis of depression was bullshit, and immediately sought second (and third) opinions to get to the bottom of what was going on.
我有两位祖父母在患阿尔茨海默病多年后去世。感觉很奇怪，就像看着一个人以慢动作死去；当身体最终离世时，人们往往视之为一种解脱，因为你认识的那个“人”其实早就消散了。这就像一首歌渐渐化成了噪声，而不是干脆地停止。
petercooper查看英文原文
I have had two grandparents die after having Alzheimer's for long periods of time. It's odd because it's like watching someone die in slow motion and when the body does eventually die people often look on it as a relief because the "person" you knew inside had actually faded away a long time ago. It's like a song fading to static versus just stopping.
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