How I'm preparing to get Alzheimer's
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0:01 - 0:02I'd like to talk about my dad.
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0:02 - 0:05My dad has Alzheimer's disease.
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0:05 - 0:09He started showing the symptoms about 12 years ago,
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0:09 - 0:12and he was officially diagnosed in 2005.
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0:12 - 0:16Now he's really pretty sick. He needs help eating,
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0:16 - 0:20he needs help getting dressed, he doesn't really know where he is
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0:20 - 0:24or when it is, and it's been really, really hard.
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0:24 - 0:28My dad was my hero and my mentor for most of my life,
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0:28 - 0:31and I've spent the last decade watching him disappear.
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0:31 - 0:39My dad's not alone. There's about 35 million people globally living with some kind of dementia,
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0:39 - 0:44and by 2030 they're expecting that to double to 70 million.
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0:44 - 0:46That's a lot of people.
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0:46 - 0:53Dementia scares us. The confused faces and shaky hands of people who have dementia,
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0:53 - 0:57the big numbers of people who get it, they frighten us.
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0:57 - 1:00And because of that fear, we tend to do one of two things:
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1:00 - 1:06We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."
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1:06 - 1:09Or, we decide that we're going to prevent dementia,
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1:09 - 1:14and it will never happen to us because we're going to do everything right and it won't come and get us.
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1:14 - 1:20I'm looking for a third way: I'm preparing to get Alzheimer's disease.
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1:20 - 1:26Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
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1:26 - 1:31I'm eating right, I'm exercising every day, I'm keeping my mind active,
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1:31 - 1:34that's what the research says you should do.
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1:34 - 1:38But the research also shows that there's nothing that will 100 percent protect you.
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1:38 - 1:42If the monster wants you, the monster's gonna get you.
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1:42 - 1:44That's what happened with my dad.
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1:44 - 1:50My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
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1:50 - 1:54(Laughter)
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1:54 - 1:56He got dementia anyway.
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1:56 - 1:59If the monster wants you, the monster's gonna get you.
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1:59 - 2:04Especially if you're me, 'cause Alzheimer's tends to run in families.
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2:04 - 2:08So I'm preparing to get Alzheimer's disease.
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2:08 - 2:10Based on what I've learned from taking care of my father,
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2:10 - 2:15and researching what it's like to live with dementia, I'm focusing on three things in my preparation:
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2:15 - 2:21I'm changing what I do for fun, I'm working to build my physical strength,
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2:21 - 2:28and -- this is the hard one -- I'm trying to become a better person.
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2:28 - 2:34Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
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2:34 - 2:38You can't sit and have long talks with your old friends, because you don't know who they are.
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2:38 - 2:42It's confusing to watch television, and often very frightening.
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2:42 - 2:45And reading is just about impossible.
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2:45 - 2:48When you care for someone with dementia, and you get training,
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2:48 - 2:54they train you to engage them in activities that are familiar, hands-on, open-ended.
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2:54 - 2:58With my dad, that turned out to be letting him fill out forms.
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2:58 - 3:04He was a college professor at a state school; he knows what paperwork looks like.
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3:04 - 3:08He'll sign his name on every line, he'll check all the boxes,
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3:08 - 3:11he'll put numbers in where he thinks there should be numbers.
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3:11 - 3:15But it got me thinking, what would my caregivers do with me?
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3:15 - 3:20I'm my father's daughter. I read, I write, I think about global health a lot.
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3:20 - 3:25Would they give me academic journals so I could scribble in the margins?
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3:25 - 3:28Would they give me charts and graphs that I could color?
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3:28 - 3:32So I've been trying to learn to do things that are hands-on.
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3:32 - 3:37I've always liked to draw, so I'm doing it more even though I'm really very bad at it.
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3:37 - 3:43I am learning some basic origami. I can make a really great box.
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3:43 - 3:45(Laughter)
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3:45 - 3:52And I'm teaching myself to knit, which so far I can knit a blob.
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3:52 - 3:57But, you know, it doesn't matter if I'm actually good at it. What matters is that my hands know how to do it.
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3:57 - 4:00Because the more things that are familiar, the more things my hands know how to do,
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4:00 - 4:05the more things that I can be happy and busy doing when my brain's not running the show anymore.
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4:05 - 4:10They say that people who are engaged in activities are happier,
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4:10 - 4:15easier for their caregivers to look after, and it may even slow the progress of the disease.
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4:15 - 4:17That all seems like win to me.
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4:17 - 4:20I want to be as happy as I can for as long as I can.
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4:20 - 4:25A lot of people don't know that Alzheimer's actually has physical symptoms,
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4:25 - 4:29as well as cognitive symptoms. You lose your sense of balance,
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4:29 - 4:35you get muscle tremors, and that tends to lead people to being less and less mobile.
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4:35 - 4:37They get scared to walk around. They get scared to move.
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4:37 - 4:41So I'm doing activities that will build my sense of balance.
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4:41 - 4:45I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,
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4:45 - 4:47I'll still be able to be mobile.
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4:47 - 4:51I'm doing weight-bearing exercise, so that I have the muscle strength
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4:51 - 4:55so that when I start to wither, I have more time that I can still move around.
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4:55 - 5:01Finally, the third thing. I'm trying to become a better person.
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5:01 - 5:06My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
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5:06 - 5:11I've seen him lose his intellect, his sense of humor, his language skills,
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5:11 - 5:15but I've also seen this: He loves me, he loves my sons,
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5:15 - 5:19he loves my brother and my mom and his caregivers.
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5:19 - 5:23And that love makes us want to be around him, even now.
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5:23 - 5:25even when it's so hard.
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5:25 - 5:28When you take away everything that he ever learned in this world,
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5:28 - 5:30his naked heart still shines.
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5:30 - 5:34I was never as kind as my dad, and I was never as loving.
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5:34 - 5:37And what I need now is to learn to be like that.
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5:37 - 5:43I need a heart so pure that if it's stripped bare by dementia, it will survive.
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5:43 - 5:45I don't want to get Alzheimer's disease.
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5:45 - 5:49What I want is a cure in the next 20 years, soon enough to protect me.
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5:49 - 5:53But if it comes for me, I'm going to be ready.
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5:53 - 5:54Thank you.
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5:54 - 6:03(Applause)
- Title:
- How I'm preparing to get Alzheimer's
- Speaker:
- Alanna Shaikh
- Description:
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When faced with a parent suffering from Alzheimer's, most of us respond with denial ("It won't happen to me") or extreme efforts at prevention. But global health expert and TED Fellow Alanna Shaikh sees it differently. She's taking three concrete steps to prepare for the moment -- should it arrive -- when she herself gets Alzheimer's disease.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 06:26
Thu-Huong Ha edited English subtitles for How I'm preparing to get Alzheimer's | ||
ChangHyun Lee accepted English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's | ||
Devaki Erande edited English subtitles for How I'm preparing to get Alzheimer's |