WEBVTT 00:00:00.908 --> 00:00:02.500 I'd like to talk about my dad. 00:00:02.500 --> 00:00:05.076 My dad has Alzheimer's disease. 00:00:05.076 --> 00:00:08.636 He started showing the symptoms about 12 years ago, 00:00:08.636 --> 00:00:12.023 and he was officially diagnosed in 2005. 00:00:12.023 --> 00:00:16.348 Now he's really pretty sick. He needs help eating, 00:00:16.348 --> 00:00:20.236 he needs help getting dressed, he doesn't really know where he is 00:00:20.236 --> 00:00:24.100 or when it is, and it's been really, really hard. 00:00:24.100 --> 00:00:27.612 My dad was my hero and my mentor for most of my life, 00:00:27.612 --> 00:00:31.140 and I've spent the last decade watching him disappear. NOTE Paragraph 00:00:31.140 --> 00:00:39.277 My dad's not alone. There's about 35 million people globally living with some kind of dementia, 00:00:39.277 --> 00:00:43.926 and by 2030 they're expecting that to double to 70 million. 00:00:43.926 --> 00:00:46.076 That's a lot of people. 00:00:46.076 --> 00:00:52.692 Dementia scares us. The confused faces and shaky hands of people who have dementia, 00:00:52.692 --> 00:00:56.540 the big numbers of people who get it, they frighten us. 00:00:56.540 --> 00:01:00.285 And because of that fear, we tend to do one of two things: 00:01:00.285 --> 00:01:05.740 We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me." 00:01:05.740 --> 00:01:09.373 Or, we decide that we're going to prevent dementia, 00:01:09.373 --> 00:01:14.189 and it will never happen to us because we're going to do everything right and it won't come and get us. 00:01:14.189 --> 00:01:19.940 I'm looking for a third way: I'm preparing to get Alzheimer's disease. NOTE Paragraph 00:01:19.940 --> 00:01:25.500 Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's. 00:01:25.500 --> 00:01:30.820 I'm eating right, I'm exercising every day, I'm keeping my mind active, 00:01:30.820 --> 00:01:33.724 that's what the research says you should do. 00:01:33.724 --> 00:01:38.212 But the research also shows that there's nothing that will 100 percent protect you. 00:01:38.212 --> 00:01:41.724 If the monster wants you, the monster's gonna get you. 00:01:41.724 --> 00:01:44.164 That's what happened with my dad. 00:01:44.164 --> 00:01:50.012 My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds. 00:01:50.012 --> 00:01:53.987 (Laughter) 00:01:54.018 --> 00:01:56.136 He got dementia anyway. 00:01:56.136 --> 00:01:58.573 If the monster wants you, the monster's gonna get you. 00:01:58.573 --> 00:02:04.333 Especially if you're me, 'cause Alzheimer's tends to run in families. 00:02:04.333 --> 00:02:08.082 So I'm preparing to get Alzheimer's disease. NOTE Paragraph 00:02:08.082 --> 00:02:10.036 Based on what I've learned from taking care of my father, 00:02:10.036 --> 00:02:15.284 and researching what it's like to live with dementia, I'm focusing on three things in my preparation: 00:02:15.284 --> 00:02:21.276 I'm changing what I do for fun, I'm working to build my physical strength, 00:02:21.276 --> 00:02:28.075 and -- this is the hard one -- I'm trying to become a better person. 00:02:28.075 --> 00:02:33.764 Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself. 00:02:33.764 --> 00:02:37.900 You can't sit and have long talks with your old friends, because you don't know who they are. 00:02:37.900 --> 00:02:42.188 It's confusing to watch television, and often very frightening. 00:02:42.188 --> 00:02:44.812 And reading is just about impossible. 00:02:44.812 --> 00:02:48.268 When you care for someone with dementia, and you get training, 00:02:48.268 --> 00:02:53.772 they train you to engage them in activities that are familiar, hands-on, open-ended. 00:02:53.772 --> 00:02:58.284 With my dad, that turned out to be letting him fill out forms. 00:02:58.284 --> 00:03:03.789 He was a college professor at a state school; he knows what paperwork looks like. 00:03:03.789 --> 00:03:08.444 He'll sign his name on every line, he'll check all the boxes, 00:03:08.444 --> 00:03:10.819 he'll put numbers in where he thinks there should be numbers. 00:03:10.819 --> 00:03:14.812 But it got me thinking, what would my caregivers do with me? 00:03:14.812 --> 00:03:20.308 I'm my father's daughter. I read, I write, I think about global health a lot. 00:03:20.308 --> 00:03:24.564 Would they give me academic journals so I could scribble in the margins? 00:03:24.564 --> 00:03:27.668 Would they give me charts and graphs that I could color? 00:03:27.668 --> 00:03:31.868 So I've been trying to learn to do things that are hands-on. 00:03:31.868 --> 00:03:37.174 I've always liked to draw, so I'm doing it more even though I'm really very bad at it. 00:03:37.174 --> 00:03:42.796 I am learning some basic origami. I can make a really great box. 00:03:42.796 --> 00:03:44.943 (Laughter) 00:03:44.943 --> 00:03:52.025 And I'm teaching myself to knit, which so far I can knit a blob. NOTE Paragraph 00:03:52.025 --> 00:03:56.668 But, you know, it doesn't matter if I'm actually good at it. What matters is that my hands know how to do it. 00:03:56.668 --> 00:04:00.157 Because the more things that are familiar, the more things my hands know how to do, 00:04:00.157 --> 00:04:05.150 the more things that I can be happy and busy doing when my brain's not running the show anymore. 00:04:05.150 --> 00:04:09.760 They say that people who are engaged in activities are happier, 00:04:09.760 --> 00:04:14.652 easier for their caregivers to look after, and it may even slow the progress of the disease. 00:04:14.652 --> 00:04:17.164 That all seems like win to me. 00:04:17.164 --> 00:04:20.187 I want to be as happy as I can for as long as I can. 00:04:20.187 --> 00:04:24.708 A lot of people don't know that Alzheimer's actually has physical symptoms, 00:04:24.708 --> 00:04:28.982 as well as cognitive symptoms. You lose your sense of balance, 00:04:28.982 --> 00:04:34.539 you get muscle tremors, and that tends to lead people to being less and less mobile. 00:04:34.539 --> 00:04:37.124 They get scared to walk around. They get scared to move. 00:04:37.124 --> 00:04:40.564 So I'm doing activities that will build my sense of balance. 00:04:40.564 --> 00:04:45.225 I'm doing yoga and tai chi to improve my balance, so that when I start to lose it, 00:04:45.225 --> 00:04:47.207 I'll still be able to be mobile. 00:04:47.207 --> 00:04:51.149 I'm doing weight-bearing exercise, so that I have the muscle strength 00:04:51.149 --> 00:04:55.278 so that when I start to wither, I have more time that I can still move around. NOTE Paragraph 00:04:55.278 --> 00:05:00.879 Finally, the third thing. I'm trying to become a better person. 00:05:00.879 --> 00:05:05.646 My dad was kind and loving before he had Alzheimer's, and he's kind and loving now. 00:05:05.646 --> 00:05:10.526 I've seen him lose his intellect, his sense of humor, his language skills, 00:05:10.526 --> 00:05:15.006 but I've also seen this: He loves me, he loves my sons, 00:05:15.006 --> 00:05:18.717 he loves my brother and my mom and his caregivers. 00:05:18.717 --> 00:05:23.422 And that love makes us want to be around him, even now. 00:05:23.422 --> 00:05:24.806 even when it's so hard. 00:05:24.806 --> 00:05:28.109 When you take away everything that he ever learned in this world, 00:05:28.109 --> 00:05:30.398 his naked heart still shines. 00:05:30.398 --> 00:05:34.317 I was never as kind as my dad, and I was never as loving. 00:05:34.317 --> 00:05:37.365 And what I need now is to learn to be like that. 00:05:37.365 --> 00:05:42.838 I need a heart so pure that if it's stripped bare by dementia, it will survive. NOTE Paragraph 00:05:42.838 --> 00:05:45.357 I don't want to get Alzheimer's disease. 00:05:45.357 --> 00:05:49.221 What I want is a cure in the next 20 years, soon enough to protect me. 00:05:49.221 --> 00:05:52.671 But if it comes for me, I'm going to be ready. 00:05:52.671 --> 00:05:54.421 Thank you. NOTE Paragraph 00:05:54.421 --> 00:06:03.341 (Applause)