Slipping Away
'It's kind of like you're going through a forest, and the more you walk into the forest, the leaves get bigger and bigger and bigger, and you just become overwhelmed,' he says.
“这有点像你正在穿过一片森林，你越深入森林，树叶就会变得越来越大，你就会不知所措，”他说。
'It's just something that you can't stand.'
“这只是你无法忍受的事情。”
Jo completed these tests in order to monitor his disease.
乔完成了这些测试以监测他的疾病。
He was asked to write a sentence of any kind and earned a point if it made grammatical sense.
他被要求写一个任何类型的句子，如果语法有意义就得一分。
S omeone asked Barry Greenberg once in a job interview what his life goal was.
有一次，有人在面试时问巴里·格林伯格他的人生目标是什么。
He said he wanted the packaging for a drug that could treat Alzheimerâs disease framed on his office wall, knowing he played some role in its existence.
他说，他希望将一种治疗阿尔茨海默病的药物的包装挂在办公室的墙上，因为他知道自己在该药物的存在中发挥了一定作用。
He was 30 years old when he said that; heâs 59 now, and heâs still working on it.
他说这句话的时候已经30岁了；他现在 59 岁了，但仍在为此努力。
âWe had a lot of hubris back in the day, when we first cloned the amyloid precursor gene, that we were gonna have this thing licked within a decade, in the 1990s,â he says of one of the genes that carries a mutation guaranteeing the disease.
“当我们第一次克隆淀粉样蛋白前体基因时，我们非常傲慢，认为我们将在 10 年内（即 20 世纪 90 年代）解决这个问题，”他谈到携带导致这种疾病的突变的基因之一时说道。
âNature has a way of insidiously laughing at that.â Greenberg is director of neuroscience drug discovery and development for the University Health Network and director of strategy for the Toronto Dementia Research Alliance.
“大自然总是会阴险地嘲笑这一点。”格林伯格是大学健康网络神经科学药物发现和开发部主任，也是多伦多痴呆症研究联盟的战略主任。
Heâs one of the people leading the search for a drug that could make that third strand on the chart on Borrieâs wall a reality.
他是领导寻找一种药物的人之一，这种药物可以使博里墙上的图表上的第三条链成为现实。
The most active area of drug research right now is for the very early stages of Alzheimerâs, because the disease is already well-advanced by the time people experience noticeable cognitive problems.
目前药物研究最活跃的领域是针对阿尔茨海默病的早期阶段，因为当人们出现明显的认知问题时，这种疾病已经很严重了。
âWhat youâre trying to do is stop a disease process thatâs already rip-roaring away in the brain,â Greenberg says.
“你要做的就是阻止已经在大脑中肆虐的疾病过程，”格林伯格说。
âI personally donât think weâre going to be able to treat or cure Alzheimerâs disease once itâs established, because the brain is already significantly damaged.â These âprevention studiesâ require a population of patients who are not yet symptomatic, but are guaranteed to get Alzheimerâsâpeople with a genetic mutation like Joâs.
“我个人认为，一旦阿尔茨海默氏病确诊，我们就无法治疗或治愈它，因为大脑已经受到严重损害。”这些“预防研究”需要一群尚未出现症状的患者，但肯定会患上阿尔茨海默病，即具有以下基因突变的患者：乔斯。
There are currently three major projects under way around the world, administering intravenous antibodies and other selected drugs to patients in hopes the treatments can help remove the buildup of amyloid in the brain before it inflicts damage.
目前世界各地正在进行三个主要项目，向患者注射静脉抗体和其他选定的药物，希望这些治疗能够帮助在造成损害之前消除大脑中淀粉样蛋白的堆积。
It appeared initially that Jo was excluded from all these studies because his disease was too advanced, but Borrie found one heâs eligible for, and heâs working to make that happen.
最初，乔被排除在所有这些研究之外，因为他的疾病太严重了，但博里找到了一个他符合资格的研究，并且他正在努力实现这一目标。
Itâs too late for Jo himself to benefit, but the key to finding a cure for Alzheimerâs may well lie with people who have his form of the disease.
对于乔本人来说，想要受益已经太晚了，但找到治疗阿尔茨海默氏症的方法的关键很可能在于患有他这种疾病的人。
âHere I am, 30 years out from what I thought was a seminal discovery,â Greenberg says, âand it was, in some respects.
格林伯格说：“我距离这个我认为具有开创性的发现已经过去了 30 年，从某些方面来看，确实如此。”
Iâve still got to say, optimistically, that weâre five years away from identifying something where we can say, âThis is going to prevent the disease.â â Jo has always kept his guitar close by his side, even if it now frustrates him occasionally S eptember was very hard for Jo and Robin.
我仍然要乐观地说，我们还需要五年的时间才能确定一些我们可以说的东西，“这将预防这种疾病。”乔总是把他的吉他放在身边，即使现在偶尔会让他感到沮丧，九月对乔和罗宾来说非常艰难。
A new school year started, and Robin and their teacher friends went back to work, but Jo did not: His diagnosis and difficulties the previous spring made teaching an impossibility.
新学年开始了，罗宾和他们的老师朋友回去工作了，但乔没有：去年春天他的诊断和困难使教学变得不可能。
On a visit to Ottawa that fall, Jo and Shawn went into the backyard one night with their drinks.
那年秋天访问渥太华时，乔和肖恩有一天晚上带着饮料走进后院。
Jo could barely get the words out when he told Shawn his teaching days were over.
当乔告诉肖恩他的教学生涯结束时，他几乎无法说出话来。
âI can deal with all this other crap, because it is what it is, but that hurt,â Shawn recalls him saying.
“我可以处理所有其他的废话，因为事情就是这样，但这很伤人，”肖恩回忆道。
âThatâs me, thatâs who I am.â The end of the career he was only just establishing made his illness brutally real.
“这就是我，这就是我。”他刚刚建立的职业生涯的结束让他的疾病变得残酷真实。
âThe disease didnât take his brain firstâit took his happiness, his centre,â Shawn says.
“疾病并没有首先夺走他的大脑，而是夺走了他的幸福、他的中心，”肖恩说。
The last class Jo ever taught, the previous spring, was Robinâs.
去年春天，乔教过的最后一个班级是罗宾的班级。
She tried to make things sounds better: âItâs like youâre retired.
她试图让事情听起来更好：“就像你退休了一样。”
How are you gonna spend your days?â sheâd ask.
你打算如何度过这一天？”她会问。
But it was awful, for both of them.
但这对他们俩来说都是可怕的。
Teaching had been a huge part of their shared life, and while that was suddenly gone for Jo, she still walked out the door every morning to the place where they used to work together.
教学是他们共同生活的重要组成部分，虽然对于乔来说，这一切突然消失了，但她仍然每天早上走出家门，前往他们过去一起工作的地方。
Jo tried to fill his time: He wrote and sketched and read, and he would walk to a nearby library and bring home whatever caught his interest.
乔试图打发时间：他写作、素描和阅读，他会步行到附近的图书馆，把任何他感兴趣的东西带回家。
âIt sucks,â he says, âbut you have to make the best of it, right?â At the end of October, he saw Borrie again and repeated the MMSE.
“这很糟糕，”他说，“但你必须充分利用它，对吧？” 10 月底，他再次见到博里并重复了 MMSE。
He performed better on the questions about timeâfor someone as intelligent and educated as Jo, there can be a slight uptick in performance with practiceâbut he guessed the building he was in was the Hospital for Sick Children.
他在关于时间的问题上表现得更好——对于像乔这样聪明、受过良好教育的人来说，通过练习，成绩可能会略有提高——但他猜测他所在的大楼是病童医院。
The strokes on his pentagon drawing were skilful as always, but one of the shapes looked as though it were made of popsicle sticks that had been pulled apart.
他的五边形画上的笔触一如既往地娴熟，但其中一个形状看起来像是由被拉断的冰棍棒制成的。
For a sentence, Jo wrote, âI am mine.â The phrase didnât make any sense, so he didnât get a point for it.
对于一句话，乔写道：“我是我的。”这句话没有任何意义，所以他没有得到任何意义。
He scored 18 out of 30.
满分 30 分，他得了 18 分。
An average decline of two to four points on the MMSE would be expected over the course of a year for a patient with Alzheimerâs, but Jo had lost five points in four months.
对于阿尔茨海默病患者来说，一年内 MMSE 平均会下降 2 到 4 分，但 Jo 在四个月内下降了 5 分。
One evening late in the fall, Jo planned to meet Robin at Beal for a dance show.
秋末的一个晚上，乔计划在比尔与罗宾见面观看一场舞蹈表演。
He was going to take a bus heâd been on countless times, but he got on the wrong one, then forgot where he was going.
他打算乘坐一辆他已经坐过无数次的公共汽车，但他上错了，然后就忘记了自己要去哪里。
He hadnât taken his phone with him, and Robin spent frantic hours trying to find him while he rode the bus to the opposite side of London and back.
他没有带手机，罗宾花了几个小时疯狂地试图找到他，而他则乘坐巴士往返于伦敦的另一边。
Finally, after midnight, Jo walked in the door of their apartment.
最后，午夜过后，乔走进了他们的公寓门。
That was the end of him taking the bus on his own.
至此，他独自乘坐公交车就结束了。
In December, Robinâs friend and co-worker, Sandy, took Jo shopping for Robinâs Christmas gifts.
12 月，罗宾的朋友兼同事桑迪带乔去购买罗宾的圣诞礼物。
Robin had provided a list, but the point wasnât for her to get what she wantedâit was all about Jo having a victory come Christmas morning.
罗宾提供了一份清单，但重点不是让她得到她想要的东西，而是让乔在圣诞节早上取得胜利。
He and Sandy got the cookbooks and tea she asked for, then Jo picked out a Jack Johnson album.
他和桑迪拿到了她要的食谱和茶，然后乔挑选了一张杰克·约翰逊的专辑。
Robin loved it.
罗宾很喜欢它。
Then, in January this year, the ground dropped out from under them.
然后，今年一月，他们脚下的地面突然塌陷。
Robinâs mom, Kathy, had been ill for a long time with heart problems.
罗宾的妈妈凯西因心脏病长期患病。
She caught pneumonia and simply couldnât recover and, on Jan.
她得了肺炎，根本无法康复。
30, she died.
30岁，她死了。
Kathy was a creative forceâshe sewed, knit, quilted, painted and made potteryâwho always told you what you really needed to hear, no sugar-coating; Robin is her motherâs daughter.
凯西是一位富有创造力的人——她会缝纫、编织、绗缝、绘画和制作陶器——她总是告诉你你真正需要听到的，没有任何糖衣；罗宾是她母亲的女儿。
Through the stormiest days of their marriage before Joâs diagnosis, she never judgedâshe simply stood by them and loved them.
在乔确诊之前，在他们婚姻中最风雨飘摇的日子里，她从不评判——她只是站在他们身边，爱他们。
âMoms just know, right?â Robin says, sobbing.
“妈妈们都知道，对吧？”罗宾抽泣着说道。
âYou pick up the phone, you talk to your mom, you donât have to say anything.
– 你拿起电话，和你妈妈说话，你什么都不用说。
Itâs a mom.â And her motherâs death was the first life-altering event for Robin during which Jo could not be her source of support.
她母亲的去世是罗宾第一次改变人生的事件，在此期间乔无法成为她的支持来源。
He would notice her sadness, but some days needed to be reminded over and over why she felt that way.
他会注意到她的悲伤，但有时需要一遍又一遍地提醒她为什么会有这种感觉。
As Robin recalls all of this months later, she and Jo sit on opposite ends of the couch in their living room, both of them weeping.
几个月后，罗宾回忆起这一切，她和乔坐在客厅沙发的两端，两人都在哭泣。
He watches her with mournful eyes, as though heâs sitting just a little too far away to reach her.
他用悲伤的眼神看着她，就好像他坐得离她有点远，够不着她。
Robin ordered a monitor bracelet.
罗宾订购了一个监控手环。
But who will look for an Alzheimer's bracelet on a man in his 30s?
但谁会在 30 多岁的男人身上寻找阿尔茨海默氏症手镯呢？
Part of Jo's cognitive function tests involved copying a drawing of two overlapping pentagons.
乔的认知功能测试的一部分涉及复制两个重叠的五边形的图画。
An average decline is two to four points on the test over a year.
一年内的测试平均下降两到四个点。
Jo lost nine points in 13 months.
乔在 13 个月内丢掉了 9 分。
A score from 20 to 26 suggests mild dementia.
20 到 26 分表示轻度痴呆。
'When I look back, sometimes I think that was harder than when we finally got the diagnosis,' Robin says.
“当我回顾过去时，有时我认为这比我们最终得到诊断时更困难，”罗宾说。
'He was not the person I knew; he was not the person I married.'
“他不是我认识的人；他不是我结婚的人。
'Itâs a disease where there isnât a whole lot of hope.
“这是一种没有太多希望的疾病。”
There is zero chance of a happy ending'
幸福结局的可能性为零”
Reporter: Shannon Proudfoot Editor: Dianna Symonds Photo editor: Liz Sullivan Art director: Stephen Gregory ⨠Digital production editor: Amanda Shendruk Video producer: Liz Sullivan Photographers: Dillan Cools and Jessica Deeks Videographer: Dillan Cools Video editor: Dillan Cools
记者：Shannon Proudfoot 编辑：Dianna Symonds 图片编辑：Liz Sullivan 艺术总监：Stephen Gregory ❀ 数字制作编辑：Amanda Shendruk 视频制作人：Liz Sullivan 摄影师：Dillan Cools 和 Jessica Deeks 摄像师：Dillan Cools 视频编辑：Dillan Cools