Still Alice Page 0,95

do but write. You can’t even daydream there for long without looking crazy. So you just put your head down and do it. And I found I always had to stop short to go pick up my daughter from school. I’d be right in the middle of a great scene, right in the zone, and it would be time to get my daughter. And that would be it for the day. I wouldn’t get back to it until the next morning. I stuck to that. My time to write was my time to write, and my time with my daughter belonged to us. I think having a limited number of hours each day to write kept me hungry to get back to it. I never dreaded it or experienced writer’s block. Every day, I couldn’t wait to get back to Starbucks, drink chai tea lattes, and write.

What advancements do you see being made in the fight against Alzheimer’s?

Awareness leading to earlier diagnosis is important. Although the current drugs available for treating Alzheimer’s do not change the ultimate course of this disease, they can stave off its progression for a significant amount of time, allowing the person with Alzheimer’s to live on a sort of plateau, to enjoy the capabilities they still have for a longer time. And the sooner someone is diagnosed and put on medication that keeps them on that plateau, the more likely they’ll be able to reap the benefits of a better treatment when one becomes available.

The other advancement I see is that the next generation of drugs for Alzheimer’s will be disease altering—they will stop the progression of the disease. It used to be the standard thought that amyloid plaques and/or neurofibrillary tangles got deposited in the brain, and these things “gunked” up the neurons and caused them to die. And this neuronal death caused Alzheimer’s.

Here’s the new thinking.

The cognitive deficits—the symptoms of dementia—occur before the plaques form, before the neurons die. In the brain of someone with Alzheimer’s, there is too much of a soluble protein called amyloid-beta 42. Either too much is made or not enough is cleared away. When too much is present, these individual little peptides stick together and form small oligomers. These gluey oligomers of amyloid-beta 42 lodge in synapses—the spaces between neurons—and interfere with synaptic transmission, the ability of neuron number one to “talk” to neuron number two. And when this happens, new information isn’t learned. Or old information can’t be accessed. Synaptic plasticity suffers. Over time, because this synapse isn’t working properly and because of inflammation and other problems, that nerve axon terminal will retract. Eventually, unable to function, the neuron will die, leaving behind empty space (the atrophy seen on an MRI) and possibly a heap of amyloid-beta 42 in an amyloid plaque.

So it all starts as an attack on the synapses. The degree of dementia correlates only with synapse dysfunction, not with neuronal loss, not with number of plaques, not with atrophy on an MRI.

The cure for dementia, then, the kind of treatments that will be disease altering, will

impede production of amyloid-beta 42,

increase clearance of already produced amyloid-beta 42,

prevent amyloid-beta 42 from sticking to itself so it can’t form oligomers, or

rip these already formed oligomers apart.

The beauty and the hope in all of these treatments is that people suffering from symptoms of dementia can be treated before they’ve experienced any neuron death. If the synapses are fixed, neurotransmission can work again. Function can be restored!

In choosing to tell a story about a woman with Alzheimer’s disease, why did you make Alice a fifty-year-old Harvard professor rather than an eighty-year-old retired grandmother?

Well, one is that the fifty-year-old will notice and be alarmed by this disease in its earliest moments. Because we as a culture expect eighty-five-year-olds to be forgetful, because retired grandparents are no longer accountable to corporate bosses, because they don’t have to produce a certain number and quality of widgets each day, because they might be widowed and living alone with no one to regularly witness the full extent of what is happening, because it is far easier to deny what is happening well after we suspect it or even trip over it, we don’t usually see Alzheimer’s in its beginning. In someone who is fifty, who is at the peak of her career, whose status in life and identity depends on a highly functioning brain, you’ll see the beginning. And when the rug is pulled out, it’s a long and terrifying fall.

There is a line in the book where Alice’s doctor tells her, “…you may not be the most reliable source of what’s been going on.” Yet you chose to tell the story from Alice’s point of view. Doesn’t that get difficult to do as Alice’s disease worsens and her perceptions indeed get less reliable?

It sure does, but I thought it was the most powerful choice. In telling the story through Alice’s lens, I sit the reader right up against her Alzheimer’s. It should feel uncomfortably close at times. You should feel her confusions and frustrations and terror right along with her. And yes, this choice forces us to lose what’s going on inside the thoughts of her husband and the other characters, but we get an insider’s perspective into the mind of someone slipping further and further into Alzheimer’s. Most people without Alzheimer’s never get to sit in that seat.

What is your favorite scene in the book?

There are probably two. One is a small scene with Alice and her three children. The kids are all arguing over whether their mother should be trying to remember something or not. Alice asks what time they’ll be going to a play the next day. Her son tells her not to worry about it, she doesn’t need to try to remember something she doesn’t have to because they’re not going to go without her. Her oldest daughter thinks she should be exercising her memory whenever possible, the sort of “use it or lose it” philosophy. The youngest thinks they should just let their mom know the information, and she can do with it what she wants. This is pretty common in families where someone has Alzheimer’s. There’s disagreement and people dig in their heels and take things personally. It’s rife with conflict. In this scene, they argue and hurt one another’s feelings and never agree, all in front of Alice. People talk about people with Alzheimer’s all the time right in front of them, as if they’re not there.

The other is the first paragraph. I just love everything about it. It still gives me the chills, and I’ve probably read it a hundred times.

What has the response been to Still Alice from the Alzheimer’s community? How about from the non-Alzheimer’s community, from people who have no connection to this disease?

Overwhelmingly positive. I can’t tell you how much this means to me. For someone with Alzheimer’s, or a caregiver of a loved one with this, to tell me that I got it right, that it’s uncanny how true it all was, that they saw themselves all over the book, well, that’s the highest compliment I can get. That I told the truth about this disease. This really became an important goal of mine while I was doing the research for the book and I came to know more and more people living with Alzheimer’s. And it became a careful line to walk, to not overdramatize or romanticize this disease, yet not minimize it either.

And the National Alzheimer’s Association has endorsed it. Of all the books out there on the topic of Alzheimer’s, mine is the only one, to my knowledge, to have this stamp from them.

There are people who’ve read the book who have no personal connection to Alzheimer’s and who’ve given me feedback. It’s a moving story, and I think it works because it’s about so much more than Alzheimer’s. It doesn’t lecture or preach or get too clinical. It’s about identity and living a life that matters and about what a crisis does to relationships. And it’s been incredibly rewarding to know that the book has given these readers a new awareness and sensitivity to the realities of living with Alzheimer’s.