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Famous faces of Alzheimer’s : ‘People with Alzheimer’s still matter’

NBC News collected stories of people caring for their loved ones battling Alzheimer's. Share your own stories on Twitter, Facebook or Google+ using the hashtag #AgeofAlz.

Image: Lisa Genova
Lisa Genova

Lisa Genova: What does it feel like to have Alzheimer's?

How has Alzheimer’s Disease had the greatest impact on your life?

My grandmother was diagnosed with Alzheimer’s when she was 85. Everything I read about Alzheimer’s was scientific, clinical, all viewed from the outside looking in, and the information lacked an answer to the one question I desperately wanted to understand. “What does it feel like to have Alzheimer’s?” I rearranged my life to answer that question. I’m a neuroscientist who became a novelist, an advocate and a speaker, sharing what I’ve learned, helping others better understand what it feels like to live with Alzheimer’s.

What is the one thing about the disease you think people should know that they may not be aware of? 

You are more that what you can remember. 

If I have Alzheimer’s, and we have a conversation, I might forget the verbal content of that conversation in five minutes. But that doesn’t mean I won’t continue to feel the emotional connection. It doesn’t mean the conversation wasn’t important or that it didn’t affect us. I might forget you and what you said, but that doesn’t mean that our shared experience wasn’t meaningful. We are more than what we remember. 

Image: Lisa's book: Still Alice
Lisa's book: Still Alice

People are terrified of Alzheimer's. People come up to me all the time and tell me, "I'm too afraid to read your book." "I don't want to think about it." I understand. Alzheimer's is scary. It's easier to look away, to not talk about it, to pretend it doesn't exist. But it's awfully hard to cure something that doesn't exist. Fighting Alzheimer's is going to take courage.

There is so much fear, shame, stigma, alienation, and isolation surrounding Alzheimer's. It reminds me a lot of how people viewed cancer 40-50 years ago. People didn't even say the word "cancer." Instead they called it "the big C" in hushed voices. But something changed. People began talking openly about cancer. They began wearing looped ribbons and walking to raise awareness and money, and communities began rallying around their neighbors with cancer, offering dinners and carpools and support. And now we have treatments for cancer. We have cancer survivors.

Right now, we have no Alzheimer's survivors. We need to drag Alzheimer's out of the closet and show everyone how big and urgent this problem is. We need to be brave enough to talk about Alzheimer's. And we need to change the image of this disease, which tends to show only an eldery person in end stage, someone dying from Alzheimer's. This leaves out the millions of people LIVING with Alzheimer's, people newly diagnosed in their 40's, 50's, 60's, 70's. What about those faces and voices? They don't typically get included in what gets talked about when we talk about Alzheimer's. It's time we hear and see them. Alzheimer's is not a statistic, a faceless number, or a hopeless image of someone whose life has already been lived. Alzheimer's is my grandmother, your father, her sister, his best friend. They deserve our attention, our compassion, and a cure. People with Alzheimer’s still matter.

Lisa Genova is the New York Times bestselling author of "Still Alice."

Leeza Gibbons: The heart never forgets

Image: Leeza Gibbons and her mother
Leeza Gibbons and her mother

This disease won't wait for you to be ready. You can't delay the emotional, physical and financial burden while you get prepared. It breaks in, takes a hostage and then steals from the family and loved ones while they try to negotiate a way out, but there is NO way out - it's only by going right through it that you can ever learn to cope and survive. The sooner you can name and claim your new reality, the better things will be. I lost the two most important women in my life, my mom and grandmom to Alzheimer's, but I learned that a heart never forgets and even as they were forgetting, they were not forgotten . It is possible to hold on to yourself and show up for your own life, even while letting go of someone you love who is disappearing from theirs.

Leeza Gibbons is Founder of Leeza's Place and host of the daily syndicated news magazine America Now.