TEDGlobal 2012
Alanna Shaikh: How I'm preparing to get Alzheimer's
Filmed:
Readability: 3.8
1,629,194 views
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.
Alanna Shaikh - Global health and development specialist
Global development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family. Full bio
Global development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family. Full bio
Double-click the English transcript below to play the video.
00:16
I'd like to talk about my dad.
0
908
1592
00:18
My dad has Alzheimer's disease.
1
2500
2576
00:20
He started showing the symptoms about 12 years ago,
2
5076
3560
00:24
and he was officially diagnosed in 2005.
3
8636
3387
00:27
Now he's really pretty sick. He needs help eating,
4
12023
4325
00:32
he needs help getting dressed, he doesn't really know where he is
5
16348
3888
00:36
or when it is, and it's been really, really hard.
6
20236
3864
00:40
My dad was my hero and my mentor for most of my life,
7
24100
3512
00:43
and I've spent the last decade watching him disappear.
8
27612
3528
00:47
My dad's not alone. There's about 35 million people globally living with some kind of dementia,
9
31140
8137
00:55
and by 2030 they're expecting that to double to 70 million.
10
39277
4649
00:59
That's a lot of people.
11
43926
2150
01:01
Dementia scares us. The confused faces and shaky hands of people who have dementia,
12
46076
6616
01:08
the big numbers of people who get it, they frighten us.
13
52692
3848
01:12
And because of that fear, we tend to do one of two things:
14
56540
3745
01:16
We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."
15
60285
5455
01:21
Or, we decide that we're going to prevent dementia,
16
65740
3633
01:25
and it will never happen to us because we're going to do everything right and it won't come and get us.
17
69373
4816
01:30
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
18
74189
5751
01:35
Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
19
79940
5560
01:41
I'm eating right, I'm exercising every day, I'm keeping my mind active,
20
85500
5320
01:46
that's what the research says you should do.
21
90820
2904
01:49
But the research also shows that there's nothing that will 100 percent protect you.
22
93724
4488
01:54
If the monster wants you, the monster's gonna get you.
23
98212
3512
01:57
That's what happened with my dad.
24
101724
2440
02:00
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
25
104164
5848
02:05
(Laughter)
26
110012
3975
02:09
He got dementia anyway.
27
114018
2118
02:12
If the monster wants you, the monster's gonna get you.
28
116136
2437
02:14
Especially if you're me, 'cause Alzheimer's tends to run in families.
29
118573
5760
02:20
So I'm preparing to get Alzheimer's disease.
30
124333
3749
02:23
Based on what I've learned from taking care of my father,
31
128082
1954
02:25
and researching what it's like to live with dementia, I'm focusing on three things in my preparation:
32
130036
5248
02:31
I'm changing what I do for fun, I'm working to build my physical strength,
33
135284
5992
02:37
and -- this is the hard one -- I'm trying to become a better person.
34
141276
6799
02:43
Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
35
148075
5689
02:49
You can't sit and have long talks with your old friends, because you don't know who they are.
36
153764
4136
02:53
It's confusing to watch television, and often very frightening.
37
157900
4288
02:58
And reading is just about impossible.
38
162188
2624
03:00
When you care for someone with dementia, and you get training,
39
164812
3456
03:04
they train you to engage them in activities that are familiar, hands-on, open-ended.
40
168268
5504
03:09
With my dad, that turned out to be letting him fill out forms.
41
173772
4512
03:14
He was a college professor at a state school; he knows what paperwork looks like.
42
178284
5505
03:19
He'll sign his name on every line, he'll check all the boxes,
43
183789
4655
03:24
he'll put numbers in where he thinks there should be numbers.
44
188444
2375
03:26
But it got me thinking, what would my caregivers do with me?
45
190819
3993
03:30
I'm my father's daughter. I read, I write, I think about global health a lot.
46
194812
5496
03:36
Would they give me academic journals so I could scribble in the margins?
47
200308
4256
03:40
Would they give me charts and graphs that I could color?
48
204564
3104
03:43
So I've been trying to learn to do things that are hands-on.
49
207668
4200
03:47
I've always liked to draw, so I'm doing it more even though I'm really very bad at it.
50
211868
5306
03:53
I am learning some basic origami. I can make a really great box.
51
217174
5622
03:58
(Laughter)
52
222796
2147
04:00
And I'm teaching myself to knit, which so far I can knit a blob.
53
224943
7082
04:07
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.
54
232025
4643
04:12
Because the more things that are familiar, the more things my hands know how to do,
55
236668
3489
04:16
the more things that I can be happy and busy doing when my brain's not running the show anymore.
56
240157
4993
04:21
They say that people who are engaged in activities are happier,
57
245150
4610
04:25
easier for their caregivers to look after, and it may even slow the progress of the disease.
58
249760
4892
04:30
That all seems like win to me.
59
254652
2512
04:33
I want to be as happy as I can for as long as I can.
60
257164
3023
04:36
A lot of people don't know that Alzheimer's actually has physical symptoms,
61
260187
4521
04:40
as well as cognitive symptoms. You lose your sense of balance,
62
264708
4274
04:44
you get muscle tremors, and that tends to lead people to being less and less mobile.
63
268982
5557
04:50
They get scared to walk around. They get scared to move.
64
274539
2585
04:53
So I'm doing activities that will build my sense of balance.
65
277124
3440
04:56
I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,
66
280564
4661
05:01
I'll still be able to be mobile.
67
285225
1982
05:03
I'm doing weight-bearing exercise, so that I have the muscle strength
68
287207
3942
05:07
so that when I start to wither, I have more time that I can still move around.
69
291149
4129
05:11
Finally, the third thing. I'm trying to become a better person.
70
295278
5601
05:16
My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
71
300879
4767
05:21
I've seen him lose his intellect, his sense of humor, his language skills,
72
305646
4880
05:26
but I've also seen this: He loves me, he loves my sons,
73
310526
4480
05:30
he loves my brother and my mom and his caregivers.
74
315006
3711
05:34
And that love makes us want to be around him, even now.
75
318717
4705
05:39
even when it's so hard.
76
323422
1384
05:40
When you take away everything that he ever learned in this world,
77
324806
3303
05:44
his naked heart still shines.
78
328109
2289
05:46
I was never as kind as my dad, and I was never as loving.
79
330398
3919
05:50
And what I need now is to learn to be like that.
80
334317
3048
05:53
I need a heart so pure that if it's stripped bare by dementia, it will survive.
81
337365
5473
05:58
I don't want to get Alzheimer's disease.
82
342838
2519
06:01
What I want is a cure in the next 20 years, soon enough to protect me.
83
345357
3864
06:05
But if it comes for me, I'm going to be ready.
84
349221
3450
06:08
Thank you.
85
352671
1750
06:10
(Applause)
86
354421
8920
ABOUT THE SPEAKER
Alanna Shaikh - Global health and development specialistGlobal development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family.
Why you should listen
TED Fellow Alanna Shaikh is a global health and development specilist with a vendetta against jargon. On her blog, Blood and Milk, she aims to make global development issues both accessible and understandable. In her TED Book, What's Killing Us, she explains the biggest challenges in global wellness -- from HIV/AIDS to the diminishing effectiveness of antibiotics -- in a way that anyone can understand. Earlier this year, she co-founded AidSource, a social network for aid workers. She is also the co-founder of the group SMART Aid, which educates donors and start-up projects about international aid.
Alanna Shaikh is especially interested in Alzheimer's, as she has watched her father deteriorate from the disease over the past 12 years. But she says the experience has not sent her into denial—she plans to be prepared for the genetically transmitted disease, should it ever arrive.
Alanna Shaikh | Speaker | TED.com