by Kim Keller
I was watching a TED Talk by global health consultant and writer Alanna Shaikh when she suddenly announced, “I’m preparing to get Alzheimer’s disease.”
What? Why on earth would you consign yourself to such a future? And how do you possibly prepare for such a cruel disease? I was definitely taken aback but also intrigued, so I decided to keep watching to find out more.
Alanna’s belief, it seems, stems from her father’s AD diagnosis back in 2005. He had been showing signs for about five years, and now he’s deep in the embrace of the disease, needing help to do everyday simple tasks like eating and dressing. Alanna reports that her father “doesn’t really know where he is or when it is” any longer.
Alanna, a TED Senior Fellow, is the author of What’s Killing Us: A Practical Guide to Understanding Our Biggest Global Health Problems and also writes the international relief and development blog called “Blood and Milk.” She points out there are currently 35 million people in the world with some type of dementia, and it’s estimated that the number will reach 70 million by 2030!
She believes that the thought of getting Alzheimer’s disease is so frightening, we tend to have one of two basic reactions: denial (“it’s never going to happen to me”) or prevention (“we’re going to do everything right and it won’t come and get us”).
There is no doubt that taking preventative measures is a good idea. Alanna assures the TED Talk audience that she’s following all the protocols that researchers list to stave off AD: “I’m eating right,” she says, “I’m exercising every day, I’m keeping my mind active.”
But prevention isn’t enough, because it isn’t a guarantee, especially if this disease runs in your family. “If the monster wants you,” Alanna warns, “the monster’s gonna get you.”
So she’s been searching for a “third way,” an entirely different approach to the prospect of Alzheimer’s disease overtaking your life.
After watching her dad struggle with AD for more than a decade, and then conducting her own research, Alanna has developed a plan: “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.”
Toward those ends, her first strategic move has been to change her pastimes. Alanna says she has always enjoyed reading, writing and studying global health, but she recognizes that these pleasures will be difficult to manage with AD.
So Alanna is trying to learn how to do more with her hands. She is drawing now, something she always liked to do, though she admits she’s not very good at it. She’s also taken up knitting and is learning about origami. Her aim is make these new interests familiar to her. Her plan is to find “things that I can be happy and busy doing when my brain’s not running the show anymore.”
Second, she is building her strength and balance. Most people associate AD with the loss of cognitive ability, but people with Alzheimer’s also lose their sense of balance and have muscle tremors, which makes it difficult and scary for AD patients to move around.
Alanna wants to prolong her mobility, so she is learning yoga, tai chi and weight-bearing exercises to keep her body strong for as long as possible. Alanna reasons that “when I start to lose it, I’ll still be able to be mobile.”
Lastly, she is trying to become a better person. Alanna says that her father was always “kind and loving” and that, even though his mind and body has been taken away from him, “his naked heart still shines.” And because of that, his family and his caregivers still want to be with him, even though it’s so hard. Kindness, according to Alanna, doesn’t come as easily to her as it did for her dad, but she sees how important it is. She says, “I need a heart so pure that if it’s stripped bare by dementia, it will survive.”
And that’s her three-point plan. Alanna says that she is still hoping for a cure, but “if [the disease] comes for me, I’m going to be ready.”
I hope you’ll take a few minutes to watch Alanna’s inspirational talk about her Alzheimer’s preparation. It’s frightening and inspiring all at the same time. For some people, preparing for something awful that has yet to enter your life makes it seem like you’re inviting disaster. Not welcoming it, of course — just acknowledging the likelihood that it may come for you, and that’s a scary prospect that most of us would rather not confront.
But wouldn’t you rather be prepared if it comes?
Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.
We are happy to re-post this blog from September of 2013.