Tuesday, October 14, 2008

Aricept AND Namenda

Why take medication for Alzheimer's when they don't work?

I've heard this question too many times to count. My answer has always been anecdotal, second-hand:

But they do!

Finally, we have a scientific answer confirming what I've scientifically suspected and personally witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.

Did these patients still decline? Yes.

Is this combination therapy a cure? No.

If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.

Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.

Me: How did he figure out you had Alzheimer’s?

Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.

It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”

Me: Agitated?

My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.

Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.

Me: What went through your head when you were told you had Alzheimer’s Disease?

Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Tuesday, September 2, 2008

Remembering the Spoons

I've lived in Chatham for a year now. Recently, my husband and I looked around and marveled at all we've accomplished in one year. The walls are painted, the wild and overgrown yard is somewhat tamed, the rooms are invitingly furnished, and oh yeah, we had a baby. Thinking back to last summer, I remembered how unsettled and exhausted I felt. Everything had to find its home before I could feel at home. Thinking about this, I remembered my blog post from last year about the spoons and smiled. I've come a long way in a year. I feel at home in my home now. And I can always find the spoons...

Last year:

It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.

I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.

After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”

I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.

In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.

It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.

I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.

I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.

Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Friday, August 29, 2008

To Drive or Not To Drive

Last week, someone innocently asked the DementiaUSA email group a not-so-innocent question. He asked if anyone knew how someone with dementia would go about getting a handicapped parking permit. As a person with dementia who still drives, he wants to use the handicapped spaces as a way of helping him remember where he parked his car.

Man, did he unwittingly stir the pot! The debate this question precipitated went on for days.

Here was one side:

If you can’t remember where you parked, it’s a sign that your symptoms are bad enough that you shouldn’t be driving anymore. You might not remember where you are or where you’re going and get dangerously lost. You might not remember how to operate the car or remember how much time you need to stop or to complete a turn in front of on-coming traffic and cause an accident. You might get hurt or hurt someone else, or worse, kill yourself or someone else. If you have Alzheimer’s and can’t remember where you parked your car, the solution isn’t ‘get a handicapped parking permit.’ It’s time to give up your license.

And here was the other side:

I would sometimes forget where I parked my car well before I had dementia. People without Alzheimer’s who leave a mall and can’t remember where they’d parked don’t hand over their keys. I drive slowly and cautiously and only in familiar places. I’ve never been in an accident. I only drive with my husband/wife, never alone, and he/she acts as my co-pilot.

As I was ‘lurking,’ reading without chiming in, I thought about my own recent experience losing my parked car.

Just the other day, I, a 37-year-old woman without dementia, stepped outside the grocery store, stared into the sea of mostly silver SUVs, and thought, “Now where the heck did I park?” I then spotted my car almost instantly but only because two giant kayaks, one bright orange and one bright blue, were perched high on its roof. Clearly and thankfully, forgetting where you parked isn’t criteria for giving up your driver’s license.

I was also reminded of an enlightening conversation I had almost exactly a year ago with my friend James who has young onset Alzheimer’s. Here is his perspective.

“I want to let my capabilities drive what I can do. I don’t want to hand over what I still have to this disease before it insists on taking it.

I didn’t want to give up my keys. Driving to me is one of the core things that allows you to maintain some engagement and freedom in the world, and when that’s gone, you’re dependent on the rest of the world to get you around.”

But driving with Alzheimer’s? Surely this combination is a tragedy waiting to happen, I’d thought. Alzheimer’s compromises the ability to multi-task. It causes spatial disorientation, impairs depth perception, and narrows field of vision. It’s easy to imagine the many things that could go wrong. And they do.

We see it in the news all too often. I remembered hearing about a woman from Wyoming who, at age fifty-eight and diagnosed with Alzheimer’s, got confused on her way to the airport to pick up her daughter and ended up over 650 miles from home. Police found her body about a mile from her car four days later.

The risks are real and potentially life threatening, for the driver and for others. At some point, James shouldn’t be behind the wheel. But how can James, with Alzheimer’s obscuring his ability to self-evaluate, recognize that point?

James didn’t guess, argue, or insist. He took an intensive driving exam. They tested his vision and his reaction time. They put him in video simulators. They even tested his memory. Then they put him behind the wheel. He drove on highways, side streets, through construction routes with detours, and parallel parked.

James passed the test with flying colors. He relies on this objective score to tell him whether he can continue to drive, not on the piece of paper that says he has Alzheimer’s. He has an agreement with his family that he’ll take the test every year. If the results show a decline, if he’s no longer a good candidate for driving, or if at any time anyone in his family becomes uncomfortable with his driving, he’ll give it up. And he won’t argue about it.

“But even then, I hope people will offer support. The answer isn’t ‘well now you should stay at home,’ but ‘now let’s consider some alternatives.’ Is there a bus service? What programs are available? Are there volunteers?”

So, for now, James drives with Alzheimer’s.

At the end of the heated online debate, the parties agreed to disagree. There was no consensus, no black and white, no right and wrong. Some remain drivers, others have become willing passengers.

And I remain grateful for the brightly colored kayaks on the roof of my car.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Wednesday, August 6, 2008

Self-Publish or Perish!

There is this saying in academic science: "Publish or perish!"

We say this because if you don't publish your results in peer-reviewed journals, you won't get the next round of funding, which means you won't have the money to do the next round of experiments, which means you're out of a job.

I no longer work at the lab bench as a neuroscientist. I haven't in ten years now. But this "publish or perish" mantra must've gotten under my skin and into my blood. It gave me just the mentality I needed to become a novelist.

Before I self-published my first novel, STILL ALICE, last summer, I tried going the traditional route. I spent a year querying literary agents. But no one wanted my book. I was sitting in a holding pattern with a completed novel and no one reading it, waiting to find out if STILL ALICE was ‘good enough,’ waiting to find out if I was a ‘real writer,’ unable to give myself permission to write the next book. This was not a fun year.

To the last agent that year who said, “No thanks,” I said, “Okay, then. I’ve had enough of this. I’m self-publishing.”

I’m so grateful I had the confidence to ignore his response:

“Don’t self-publish. You’ll kill your writing career before it begins.”

He couldn’t have been more wrong.

Instead of fearfully sticking my novel in a drawer, I moved forward. I self-published STILL ALICE, and the journey that followed and continues has been the ride of my life! I ultimately still wanted that big publishing house book deal, I just wasn't going to go the traditional route. I was in for almost a year of guerilla marketing, of putting on my armor and battling every day, trying to overcome the stigma of being a self-published author, trying to scale the wall of the publishing house castle.

I listed STILL ALICE on myspace, goodreads, shelfari, and more. I managed my own website and blog. I read David Meerman Scott's The New Rules of Marketing and PR and John Kremer's 1001 Ways to Market Your Books. I scheduled at least two book events a month: Readings and signings at local bookstores, coffee shops, Alzheimer's facilities or conferences, book clubs. And after seven months, after I'd started getting some good feedback and local press, I hired Kelley & Hall Book Publicity to join me in my efforts.

In the three months that I worked with Kelley & Hall, STILL ALICE was featured on television and radio. It was reviewed in newspapers, blogs, and at amazon.com. It was chosen for book clubs, as a staff pick at bookstores, and as a Finalist in General Fiction in the 2008 Next Generation Indie Book Awards. And it won the 2008 Bronte Prize for best love story in North America.

By nine months, things were definitely beginning to vibrate. By ten months, you could hear the BUZZ. Word of mouth and a generous introduction led me to a literary agent who loved my book and within a week of signing our contract, I was inside the castle. STILL ALICE sold at auction to Simon & Schuster for six figures! They’ve sold it to publishing houses in nine other countries with more to follow and plan to release it in the US on January 6, 2009.

Thursday, July 31, 2008

Just Say Yes--And

Just Say Yes—And

It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.

If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:

“Okay! This is a beautiful weave, what is it silk?”


“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”


“I’m in! Where should we go?”

And the conversation, the relationship, can continue.

If you say:

“No. I don’t want to.”


“No, that’s not a magic carpet. That’s an ordinary rug.”

If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.

I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.

Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”

The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”

My turn came around again.

“It’s a glorious, sunny day outside.”

“No, it’s not. It’s dark and cloudy, and it’s going to rain.”

Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.

When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.

“I have the most beautiful 6-month old boy.”

“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”

“It’s a glorious, sunny day outside.”

“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”

In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.

For more information about Healing Moments programs and workshops, go to www.HealingMoments.org

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Wednesday, July 2, 2008

Alzheimer's Ribbon

An Alzheimer's Ribbon is available at Caring.com. Please make your own ribbon and post it on your blog, social networking page, or anywhere else you've got a web presence! For each ribbon posted, Caring.com will donate $10 to the Alzheimer's Association.


Thursday, June 12, 2008

Talking with Jenny

I can’t really talk about Jenny without including Don. Don is Jenny’s husband. And more than anyone else I’ve met with Alzheimer’s, they are in this experience together.

I meet up with Jenny and Don at a cafĂ©. Around lunchtime, it’s crowded and noisy with customers. We decide we need to find a quieter and less distracting place to sit and talk. Jenny is thirsty, so Don leaves us to buy a bottled water for her before we go. He has just finished telling me that Jenny fell outside on the pavement.

Are you cut?

“What do you mean?”

Are you bleeding anywhere?


You just fell?

I’m unsure that I want to pursue this line of questioning. I don’t want to shine a spotlight on her Alzheimer’s like this. I don’t want to make her uncomfortable.

“I did? Is that what he said?”


“Oh, then I must’ve. I’m fine.”

She smiles and puts me at ease. So much about Jenny strikes me as vibrant and playful and young in spirit. She’s wearing a hot pink shirt and crocs. Her gray hair is pulled back tight into a high ponytail. Even her name, Jenny, and not Jenn or Jennifer, is fun.

Don returns with her water, and we head off and find a quiet spot.

Tell me about a typical day for you.

“I always go out. I walk a whole lot. We live near water, so I love walking down by the…the….the…”

“Lake Michigan,” says Don.

“Lake Michigan, yes. I love walking. I always have.”

Do you walk alone?

“Oh, yes.”

Where do you live?

“Up at the top…it looks right down to the water. It’s wonderful. It’s a lovely view. I walk there and almost anywhere. I walk up to…within…ahh, it’s so clear to me.”

“The Art Institute,” says Don.

“Yes, the Art Institute. The Cultural Center. You know, it’s very nice.”

Jenny’s anomia is quite severe and interferes with almost every answer she gives.

“I go to concerts at the Cultural Center. No set schedule. I can’t do as much as I used to do. But I always want to walk forward. I get angry at people who don’t want to let me do things or insist that I do or don’t, whether it’s silly or important. I don’t like those rules. On the other side of it…I…it’s doing what I really love to do…is spend time down close to the water.”

I wonder if her experience of this symptom is frustrating or embarrassing. It doesn’t seem to bother her. She appears to be genuinely enjoying our conversation.

What is it like having Alzheimer’s?

“I don’t think about it. I think I know all I want to know about Alzheimer’s. I do most things now that I did before. I definitely got annoyed when I found out I had it. But I thought it was me. It was a relief to know it was something other than me causing the problem.”

“Jenny was diagnosed April 1, 2002. Some joke! Her major symptom was agitation. As soon as she was diagnosed, the agitation stopped,” said Don.

Tell me about what you like to do at home.

“I look at some of the old bits of…I’ve been putting things away for years and years and years and years.”

“Letters to your mother. What she’s been putting away. She’s been going through letters she wrote to her mother,” explains Don.

“They’re steamy!” Jenny laughs.

She doesn’t remember her own letters to her mother when she reads them, but she enjoys them, often laughing out loud as she reads. She doesn’t mind that she doesn’t remember writing them or the stories as belonging to her own history. This feels normal to her. The stories in those letters happened so long ago, she feels that anyone could forget them. She’s not disturbed at all. She enjoys the letters for the content that’s there and doesn’t see them as evidence of a woman she once was who she can no longer remember.

“I sometimes look at some of the old stuff. I was an only child.”

“For a while you were. You have a sibling. There are two of you,” says Don.

“Oh, yes, that’s right. Anyway…”

Jenny and Don have many of these exchanges. Jenny can’t find a word, and Don fills in the blank. Jenny says something inaccurate, and Don corrects her. And she then agrees or disagrees or chooses to ignore him and continues on in stride, unruffled. Don is never patronizing. He’s not correcting an Alzheimer’s victim. The respect he has for his wife is obvious and enormous, and I can’t imagine it has been diminished at all by this disease. These little sidebars feel like the ordinary exchanges between a husband and wife who’ve been married for a long time. Of course, what Jenny can’t remember isn’t ordinary. But they both treat it that way. And it moves the conversation along. No one is embarrassed or upset or apologizing.

“I’m English to begin with. I came here in…”

She looks to Don.


“Yes, ‘64, and I actually didn’t like it very much. It seemed a stuffy place!”

She laughs.

“Well, she’d been in Africa for five years.”

“I was in Nigeria for four years, so I’d already done all that.”

What were you doing in Nigeria?

For the rest of my conversation with Jenny, we don’t talk about Alzheimer’s. She tells me about Nigeria, about college at Oxford, about her former job in health advocacy, about her travels and friends. At one point, I realize that we don’t have much time left together, and I’m tempted to ask her to get back to talking about Alzheimer’s. But thankfully, I don’t. Jenny isn’t about Alzheimer’s. Don isn’t about Alzheimer’s either. I remember what she’d said earlier:

“I don’t think about it.”

Her Alzheimer’s is like a naughty toddler throwing a tantrum in the middle of the room. If they were to try to tame it, bargain with it, or beg it to stop, if they became embarrassed or enraged by it, they’d only be feeding energy into it, making it bigger. It would take over and define their experience. Instead they ignore it and carry on. It’s there, but they don’t focus on it.

When I think back on my conversation with Jenny, I picture sunny walks along Lake Michigan, concerts at the Cultural Center, and Africa. I remember her pink shirt, her ponytail, and her laugh. And I remember the big hug she gave me when we were done.

Lisa Genova, Ph.D. author of STILL ALICE, www.StillAlice.com, excerpted from LIVING ALZHEIMER'S

Friday, May 16, 2008

Changing the Wind

Below is the speech given by James Smith at the 2008 Alzheimer's Public Policy Forum Candlelight Vigil earlier this week. His words--moving, clear, and true--blew me away. Like a powerful wind. Changing.

2008 Alzheimer's Public Policy Forum - Candlelight Vigil
Washington, D.C.
Remarks by James W Smith

"Thank you.

It is an incredible honor to be asked to speak to you tonight. And it is especially fitting that we are here at the Capitol reflecting pool, at a time when reflecting inside ourselves - as individuals, as a nation, and as a society - has never been more important.

People have said that in Washington, DC it is easy to tell who our elected officials are. They are the ones standing on the street corner with their moistened fingers held in the air - testing to see which way the wind is blowing. And in order to drive real change here - it does no good to simply replace them with others who will do the same. The way to get real, meaningful change is to change the wind. I want to talk to you tonight about what brings me here - and what brings us

And I am here to ask for your help in changing the wind.

We must help those here in Washington, and those representing us at home feel the power of the changing wind, in order to save our nation and our society from the storm that is already bearing down upon is. It is a storm that will tear us apart as a people and a nation if we do not turn to face it, change our priorities and get in front of it now.

That storm is Alzheimer's Disease.

And so, why am I here tonight? For several reasons. I am here because a little over two years ago I sat frozen in a chair across
from my neurologist at the Mayo Clinic as he said to me, "You have probable Alzheimer's Disease." Five words that changed my life, and the lives of those I love and care for forever.

Up until that day, Alzheimer's was not even on my radar screen. I was a busy IT Director for American Express, with twin daughters just entering college. My wife Juanita and I were entering the second half of what we liked to call "our charmed little life". We were looking forward to so many things as a couple, as a family - and it all shattered in an instant with just five little words - "You have probable Alzheimer's Disease."

And here's the deal. That moment is repeated every 71 seconds in America today. Once every 71 seconds, another person develops Alzheimer's Disease. And that person, and their family must walk out of the Dr.'s office with shattered hearts and lives and dreams and struggle to deal with those five little words and all that they imply. And the pace is accelerating. It is a tragedy in the making. Today there are over 5.2 million people in America diagnosed with Alzheimer's Disease. And by 2050, that number will explode to over 16 million in America, and over 100 million worldwide.

Think about that for a moment...

Sixteen million. Look around you right now. There are less than a thousand people here tonight. If you took those 16 million people - each of whom have been diagnosed with this devastating, incurable, degenerative brain disease - and lined them up
- shoulder to shoulder along the highway - that line would stretch from New York City to Los Angeles, and then turn up the coast for over another 1000 miles.

And if you drove along that highway lined with Alzheimer's patients - you would pass over 3,000 in the first mile. And - standing behind each of those patients - would be 32 million caregivers, and their families, and communities.

And that scenario is EXACTLY what we face if we do not refocus our national priorities and get in front of Alzheimer's now.

I am here tonight because I cannot let that happen. WE can't let that happen. WE cannot let our elected officials stand by and do nothing and allow Alzheimer's Disease to overwhelm us. The next time you are in front of your congressman or senator, ask them this question: "If you knew - without a shadow of a doubt -that someone was bringing to our shores a biological weapon of mass destruction SO POWERFUL that it would kill 16 million American citizens in a crippling, relentless and ruthlessly cruel manner - what would you be willing to do to stop that from happening?"

Not just as an elected leader - but as a human being? Because that biological weapon of mass destruction is already here. That
biological weapon of mass destruction is Alzheimer's. It has already infected over 5 million American citizens - and is attacking a new person every 71 seconds.

Ask your leaders: "What ARE you willing to do to stop this NOW - before it explodes into a tsunami?" Ask yourselves - what am I willing to do?

The sad truth is that if Alzheimer's was smallpox, we would have emergency measures, quarantines, and troops in the streets. Our elected officials would be all over themselves making speeches and passing the necessary emergency directives, and policies and laws and providing whatever funding was necessary to quell the outbreak. We would mount a full-court press as a
nation and WE. WOULD. STOP IT. Where are our leaders tonight? Where is the outcry? Where are the troops? Where are the emergency measures? And most importantly - where is the funding?

We know how to stop Alzheimer's - all we need is the will and the focus and the funding. We are SO CLOSE. If we as a nation had dedicated 1/10th - one 100th of the amount we have spent on the war in Iraq towards Alzheimer's research - Alzheimer's would be CURED. And we would have saved over 10 million lives and trillions of dollars. There is still time. But not much. Nobody else will make this go away for us. We are all - every one of us -responsible for stopping Alzheimer's. It is up to us. If not us, then who -our children?

And if we do nothing - if we simply stand by and watch and let this tragedy play out - we are sentencing 16 million Americans to an early, tragic and unnecessary fate. Make no mistake - if we don't stop it Alzheimer's Disease will impact every
single person in America in one way or another.

That doesn't have to happen. And I committed to helping make sure it doesn't.

And finally, this brings me to the most important reason I am here tonight. And I suspect it is the same reason many of you are here as well. It is the simplest thing in the world - and yet the most powerful. As I mentioned in the beginning, I have two daughters. They are amazing, bright and beautiful girls entering their senior year at Northwestern University this year. They are the light of my life - and I am more proud of them than any words can ever express. Although I understand that the reality is that I may not be alive or aware enough to benefit from the cure that I know in my heart is coming - it will come. It simply has to. The price of failure is too high.

And when it does - when that day comes that we no longer have to fear the terrible scourge of Alzheimer's - I want my daughters to know that I what I did here tonight - and what I did here this week - I did for them.

Thank you."

Wednesday, May 7, 2008

Emotions Unleashed

Not too long ago, I studied acting for a year and a half. As with any approach to acting, the ultimate goal was to ‘live truthfully under imaginary circumstances.’ You don’t pretend to be enraged, grief-stricken, or in love, you actually feel these things in response to what happens. And when an actor is able to achieve this, the effect on the audience is powerful (I always think of Shirley MacLaine screaming in a heartsick rage on the beach with Jack Nicholson in Terms of Endearment. She moves me instantly to tears every time).

As grown adults, my classmates and I found this goal to be an extraordinarily difficult one to grasp. To respond readily with honest emotion, you must be able to turn off your ‘internal editor’ or your self-consciousness, your ‘monkey mind’. This is the part of your brain, that internal voice, that says to you, “Don’t say that! What will people think?” Or, “Don’t do that! You’ll be so embarrassed.” Or, “If you do that, the other actors and the audience will think you’re stupid, a jerk, or crazy.”

We’ve been socialized not to express our raw, primal emotions. We learn not to scream when we’re angry or cry when we’re sad. When we were two years old and felt overwhelmed or perceived some horrible injustice, we might’ve readily thrown ourselves onto the ground, screaming and writhing in pure anguish. But our (humiliated) parents told us not to do this, maybe punished us or refused attention, extinguishing the behavior, and gave us other tools to use other than expressing the emotion, like ‘using our words.’

Biologically, neurons from the cortex—the brain’s higher thinking centers—form powerful inhibitory connections on the neurons in the brain’s emotion centers. So raw emotion becomes strongly inhibited. Our primary job as actors is to release this inhibition and let the natural emotion happen. I remember watching a toddler throwing a fit in a store one day while I was in the middle of my training and thinking, “If only I could do that!”

Some of you caring for someone with Alzheimer’s and even some of you with Alzheimer’s may’ve noticed this disinhibition of the brain’s primary emotion centers--

Grandpa was always a quiet, reasonable man, and now he’s prone to explosions of loud, scary anger.

Grandma had always been a polite and proper lady, and now she’s being sexually provocative with the men in line at the grocery store.

What’s going on?

Alzheimer’s Disease doesn’t just disrupt memory. It also interferes with those inhibitory connections descending from the cortex to the brain’s emotion centers. Without those inhibitory signals, the emotion centers are free and clear to fire away—Rage! Grief! Lust!

So when someone with Alzheimer’s is reacting with uncharacteristic and unapologetic emotion, he or she isn’t becoming someone else or trying to be difficult. The part of the brain that learned emotional restraint is under attack. They don’t have the neurons they need to dampen or bury it. And, because this disease has likely attacked other parts of the brain involved in language, they may not have the communication skills to ‘use their words.’

My grandmother, who’d always leaned toward flirtatious, became at times embarrassingly outright with her sexuality when she had Alzheimer’s. She would’ve made a great actress. If only she could’ve remembered her lines.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Friday, May 2, 2008

Busting The Myth of Alzheimer's

Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer's. In it, they claim that "there is no such thing as Alzheimer's Disease." "Alzheimer's Disease represents our culture's attempt to make sense of the natural process of brain aging that we cannot fully control." So, in an attempt to control it, "we've created an antagonist" and named it Alzheimer's Disease.

They claim that because we don't know the "singular cause" of Alzheimer's, because we can't cure it, and because we can't differentiate Alzheimer's from normal brain aging, we should stop diagnosing people with this "label." Labeling someone with Alzheimer's only causes them harm from the stigma attached to it. We should stop treating people with Alzheimer's medications, and we should certainly stop looking for a cure. Dementia is just normal aging, and you can't cure aging.

Wow. Where do I begin?

Let's start with cancer. We don't know yet what causes cancer or how to cure it. We treat it with crude, non-specific poisons that risk the very life of the person who takes them. There used to be a HUGE stigma attached to having cancer. Remember when everyone called it "the big C?" Cancer is not caused by one singular process. It is caused by a complex interaction between genetic and environmental influences. Should we not call cancer a disease? Of course not. Do we not tell someone they have cancer because of the stigma that might be placed on them? Of course not. Do my chances of developing cancer increase as I age? Yes, they do. Is cancer a normal part of normal aging? No, it is not.

Likewise, we can think about heart disease. Do most people develop accumulations of plaque in their arteries as they get older? Yes, they do. If untreated, will most people develop cardiovascular disease if they live long enough? Yes, they will. So is having cardiovascular disease a normal part of normal aging? No. Over the course of 50-100 years, we, as human beings who eat fatty foods and don't exercise enough, develop plaques that clog our blood vessels. This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack. Do we just accept this as normal aging and do nothing about it? No, we do not. We diet and exercise. We go to the doctor and get tested to see how much plaque we might have blocking our arteries. And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.

Proclaiming that Alzheimer's is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.

Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer's Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia. This process causes disease. A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.

Normal aging is forgetting someone's name. Alzheimer's is forgetting your spouse's name.

Yes, diagnosis is tricky today. We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer's Disease. An MRI is not sensitive enough. A blood test won't reveal it. Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates. Pencil and paper tests are only so telling. Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives. It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant. The diagnostic process may be imperfect, but we use every piece of information we have available today. Just because diagnosing Alzheimer's today is difficult, it doesn't mean that there isn't a disease there to diagnose!

And we should diagnose Alzheimer's if it's there. Why? Because we can treat it with Aricept and Namenda. Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active. Convincing people that Alzheimer's is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.

Maybe, in the future, we will be able to treat this disease without saying the words "You have Alzheimer's Disease." My grandfather died in 1978 of heart failure at the age of 69. My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.

Maybe, in the future, the treatment of Alzheimer's will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you're at risk for developing Alzheimer's, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.

Growing old without Alzheimer's.

But we have to bust Whitehouse and George's myth and acknowledge first that Alzheimer's is a disease.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Wednesday, April 30, 2008

How Did I Get Here?

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories of Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in Neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a Ph.D. in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s Disease yet. That came next.

Looking back, my eighty-five-year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s Disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I’d wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s Disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.

I’m a neuroscientist, granddaughter, friend, and author. And I’m here. How did you get here?

Lisa Genova, author of STILL ALICE, www.StillAlice.com