Alanna Shaikh: How I'm preparing to get Alzheimer's
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
I'd like to talk about my dad.
My dad has Alzheimer's disease.
He started showing the symptoms about 12 years ago,
and he was officially diagnosed in 2005.
Now he's really pretty sick. He needs help eating,
he needs help getting dressed, he doesn't really know where he is
or when it is, and it's been really, really hard.
My dad was my hero and my mentor for most of my life,
and I've spent the last decade watching him disappear.
My dad's not alone. There's about 35 million people globally living with some kind of dementia,
and by 2030 they're expecting that to double to 70 million.
That's a lot of people.
Dementia scares us. The confused faces and shaky hands of people who have dementia,
the big numbers of people who get it, they frighten us.
And because of that fear, we tend to do one of two things:
We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."
Or, we decide that we're going to prevent dementia,
and it will never happen to us because we're going to do everything right and it won't come and get us.
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
I'm eating right, I'm exercising every day, I'm keeping my mind active,
that's what the research says you should do.
But the research also shows that there's nothing that will 100 percent protect you.
If the monster wants you, the monster's gonna get you.
That's what happened with my dad.
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
He got dementia anyway.
If the monster wants you, the monster's gonna get you.
Especially if you're me, 'cause Alzheimer's tends to run in families.
So I'm preparing to get Alzheimer's disease.
Based on what I've learned from taking care of my father,
and researching what it's like to live with dementia, I'm focusing on three things in my preparation:
I'm changing what I do for fun, I'm working to build my physical strength,
and -- this is the hard one -- I'm trying to become a better person.
Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
You can't sit and have long talks with your old friends, because you don't know who they are.
It's confusing to watch television, and often very frightening.
And reading is just about impossible.
When you care for someone with dementia, and you get training,
they train you to engage them in activities that are familiar, hands-on, open-ended.
With my dad, that turned out to be letting him fill out forms.
He was a college professor at a state school; he knows what paperwork looks like.
He'll sign his name on every line, he'll check all the boxes,
he'll put numbers in where he thinks there should be numbers.
But it got me thinking, what would my caregivers do with me?
I'm my father's daughter. I read, I write, I think about global health a lot.
Would they give me academic journals so I could scribble in the margins?
Would they give me charts and graphs that I could color?
So I've been trying to learn to do things that are hands-on.
I've always liked to draw, so I'm doing it more even though I'm really very bad at it.
I am learning some basic origami. I can make a really great box.
And I'm teaching myself to knit, which so far I can knit a blob.
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.
Because the more things that are familiar, the more things my hands know how to do,
the more things that I can be happy and busy doing when my brain's not running the show anymore.
They say that people who are engaged in activities are happier,
easier for their caregivers to look after, and it may even slow the progress of the disease.
That all seems like win to me.
I want to be as happy as I can for as long as I can.
A lot of people don't know that Alzheimer's actually has physical symptoms,
as well as cognitive symptoms. You lose your sense of balance,
you get muscle tremors, and that tends to lead people to being less and less mobile.
They get scared to walk around. They get scared to move.
So I'm doing activities that will build my sense of balance.
I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,
I'll still be able to be mobile.
I'm doing weight-bearing exercise, so that I have the muscle strength
so that when I start to wither, I have more time that I can still move around.
Finally, the third thing. I'm trying to become a better person.
My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
I've seen him lose his intellect, his sense of humor, his language skills,
but I've also seen this: He loves me, he loves my sons,
he loves my brother and my mom and his caregivers.
And that love makes us want to be around him, even now.
even when it's so hard.
When you take away everything that he ever learned in this world,
his naked heart still shines.
I was never as kind as my dad, and I was never as loving.
And what I need now is to learn to be like that.
I need a heart so pure that if it's stripped bare by dementia, it will survive.
I don't want to get Alzheimer's disease.
What I want is a cure in the next 20 years, soon enough to protect me.
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.
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.