I've been doing a lot of pre-marketing interviews for STILL ALICE lately. In one of these, I was asked, "What's your motto?" I had to think for a minute, and then I said,

"Say YES whenever possible."

I'd never been forced to put this idea into words before, but I do believe in this philosophy, and it guides me a lot in my life. Since that interview, I've started thinking more about mottos and how they can influence how we choose to live. Barack Obama has a couple of great ones,

"Change." and "Yes we can!"

I asked my friends who have dementia what their mottos are, and I've posted them here. If you have a motto, a life lesson, or advice you'd like to share, please feel free to add a comment here, and I'll add it to the list.

What is YOUR motto?

At the time I started on my journey of getting a diagnosis, I heard this song by Tim McGraw, Live Like You Were Dying. This song and 
the words have the meaning of the rest of my life. I am really trying 
to "live like I was dying."
--Edye

My earlier mottos have lost much of their relevance for me, but the one that has come to be the most dear to me is from an ad in a yoga magazine in 2002 . It's pretty tattered by now. :-) It is a pen & ink drawing of a Buddha on a surfboard on a huge snake of eternity and the motto is: "In the face of eternity....Style" Which to me means: Don't go out with a whimper. Savor every moment! Ride the wave of life into the beyond!
--Jaye Lander, 62 this month, Early Onset Alzheimer’s Disease

I keep this with me as I 
advocate:

 "Change happens when ordinary people see extraordinary people, get to know 
them and see what they can do." 

(as read in The Vancouver Sun newspaper, May 31, 2008)
--Jim

I have three mottos that I go by. The first two are quotes by Helen Keller: 

"Alone we can do so little; together we can do so much"

and

"Life is a daring adventure or nothing." Then my personal one is: Keep on keeping on!
--Lynn Jackson

“You are mostly measured in life by how you deal with your losses and reversals. Handle them with grace placing positive spin on them.” This is my working motto/theme. I am a 72 year old retired trial lawyer who is Alzheimer’s Afflicted. I was diagnosed 2 years ago in Early Stage. I am working hard at staying here for as long as I can. My intent while here is to make a difference advocating for economy in patient long term care and letting anyone interested know it is not nearly as bad having it as worrying about getting it.
--Mike Donohue

"I don't have time to worry about what I can't do -- I'm too busy enjoying what I can do."
And
"Nothing I've seen since is as scary as the bombs falling on the farm in WWII when I was a little girl."
--Jenny

Live in the moment -- life's too short to worry about the future. Enjoy every day you have.
--Kris Bakowski, Early stage Alzheimer's, 53 years old.

My favorite motto is: "Act enthusiastic & you'll be enthusiastic." It
has been my favorite for many years and still applies. Guess it's sort
of like “fake it until you make it.” I also believe our ultimate purpose
in life is to help others.
--Sharon in KS, diagnosed with FTD in 2/2007 & changed to MCI in 9/2008

"I'm living my life like there's no tomorrow."
And that boils down to spending as much time as possible with my family and friends, and doing as much music as time allows.
--Jay

I would like to share Kris' motto "Live in the moment -- life's too short to worry about the future. Enjoy every day you have"
and include "Don't worry. Worry alone will not improve the out come. Be happy. Seek happiness"
--Darryl White - from the frozen tundra of Wisconsin

Labels: Alzheimer's, Lisa Genova, motto, Still Alice

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 suspected and 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

Labels: Alireza Atri, Alzheimer's, Aricept, Lisa Genova, Massachusetts General, Namenda

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

Labels: Alzheimer's, Alzheimer's driving, Lisa Genova

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?”

or

“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?”

or

“I’m in! Where should we go?”

And the conversation, the relationship, can continue.

If you say:

“No. I don’t want to.”

or

“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

Labels: Alzheimer's, healing moments, Jade Angelica

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.

http://www.caring.com/ribbons/new

Labels: advocacy, Alzheimer's, Alzheimer's Association, awareness, fundraising, Ribbon

CONTACT: Toni Williams, 202-638-8666, toni.williams@alz.org

ALZHEIMER’S DISEASE SUPERSEDES DIABETES
AS SIXTH LEADING CAUSE OF DEATH IN THE UNITED STATES

CHICAGO, June 12, 2008 -- Alzheimer’s disease is now the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics. The CDC estimates that 72,914 Americans died of Alzheimer’s disease in 2006. With an unprecedented historic population shift of 78 million aging baby boomers in the country and this disease poised to strike 10 million boomers - it is clear this escalating epidemic must be addressed now.

Today, as many as 5.2 million Americans are living with Alzheimer’s disease. The Alzheimer’s Association’s 2008 Alzheimer’s Disease Facts and Figures report revealed one out of eight baby boomers will develop this disease that currently has no effective disease-modifying treatments to halt or delay its progression. Experts predict by 2010, there will be almost a half million new cases of Alzheimer’s disease each year; and by 2050, there will be almost a million new cases each year.

“The CDC’s announcement that Alzheimer’s disease jumped from the seventh to the sixth leading cause of death should serve as a wake-up call to the nation,” said William Thies, PhD, vice president of Medical and Scientific Relations at the Alzheimer’s Association. “The fact that there are no effective treatments for Alzheimer’s has allowed the disease to pass diabetes. It is vitally important that we increase Alzheimer’s research funding to slow or stop the progression of this devastating disease.”

Researchers are closing the gap in developing accurate ways to diagnose and treat Alzheimer’s. Although there are several promising drugs currently in Phase III clinical trials, insufficient research funds are committed to research focused on Alzheimer’s disease treatment and prevention. This situation is further compounded by the fact that for the past five years the NIH budget has been essentially flat. The personal and economic impact of Alzheimer’s is so large that no one entity can solve the problem alone. It will require all levels of government and the private sector working together to diminish the human and economic cost. It must begin with accelerating research.

The CDC also reported that while deaths from Alzheimer’s disease were on the rise, other chronic conditions were on the decline. Between 2005 and 2006, the largest decline in age-adjusted death rates occurred for influenza/pneumonia (12.8 percent), and also included chronic lower respiratory diseases (6.5 percent), stroke (6.4 percent), heart disease (5.5 percent) diabetes (5.3 percent), hypertension (5 percent), chronic liver disease (3.3 percent) and cancer (1.6 percent).

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

Labels: Alzheimer's Association, Alzheimer's Disease, CDC, Leading Cause of Death

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 café. 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?

“Why?”

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?”

Yes.

“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.

“’64.”

“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, excerpted from LIVING ALZHEIMER'S

Labels: Alzheimer's, Alzheimer's Disease

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
together.

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."

Labels: Alzheimer's, Alzheimer's Disease, James Smith, Public Policy Forum

Mother’s Day is just around the corner…

If you’re looking for a special way to honor someone you love who’s been affected by Alzheimer’s, make a tribute donation to the Alzheimer's Association and write them a note on our Mother’s Day Tribute Wall.

Messages will be displayed throughout the month of May.
Make a tribute donation now!

Thanks for your support of the Alzheimer's Association!

Labels: Alzheimer's, Alzheimer's Association, Alzheimer's Disease, Donate, Gift, Mom, Mother's Day, Tribute

Use coupon code ALZ4 at 1-800 Flowers; you'll get a 10% discount off your purchase and 10% of the net proceeds will be donated to the Alzheimer's Association!

Labels: Alzheimer's, Alzheimer's Association, Alzheimer's Disease, charity, coupon, discount, Donate, Flowers, Gift, Mom, Mother's Day, research

Labels: Alzheimer's Disease, california, election, governor, nunez, perata, primary, schwarzenegger

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.

Labels: Alzheimer's, Alzheimer's Association, Alzheimer's Disease, Daniel George, dementia, Peter Whitehouse, The Myth of Alzheimer's, VOICE OPEN MOVE

The following op-ed was published in the Charleston Gazette, Charleston, WV, on March 26, 2008
By Jane Marks

On March 18, the Alzheimer's Association released its latest collection of relevant data about all aspects of the disease and its impact, current and future, on this country. It is a devastating portrait of a looming public health epidemic, and includes this sobering fact: 10 million Baby Boomers will likely get Alzheimer's disease.

Because this developing health crisis is not being addressed by our national policymakers, the association also took out full-page ads in three national newspapers to ask the three major presidential candidates, Sens. Hillary Clinton, John McCain and Barack Obama, what they plan to do about Alzheimer's.

Alzheimer's is a degenerative disease that kills the brain and eventually the person, and at this time, there are no effective treatments to stop its progression. Today, there are 78 million Baby Boomers who are going to start turning 65 in less than three years. We're staring into the face of an epidemic but we're ignoring it:

• There are about 5 million Americans living with the disease and by midcentury, that number is expected to increase to as many as 16 million.



• In West Virginia, we have approximately 47,000 individuals with Alzheimer's.



• Every 71 seconds, someone in this country develops Alzheimer's and by 2050, the rate will be every 33 seconds.



• Today, there are between 200,000 to 500,000 people under age 65 with young-onset Alzheimer's disease or other dementias.



• Experts predict that by 2010, there will be almost a half-million new cases of Alzheimer's disease each year; and by 2050, there will be almost a million new cases per year.



• The resulting growth in spending on Medicare and Medicaid will threaten the viability of these already-stressed public programs. We do not have the health infrastructure to support or care for the rising number of people with Alzheimer's.

We can change these facts, but not with the current proposed federal research budget that underfunds medical research. Researchers are close to finding effective treatments that can slow the progression of the disease, but they are not getting funds they need. For the past five years, the NIH budget has been essentially flat. Compared to medical research inflation, NIH has actually lost 13 percent in purchasing power. The number of grants has declined significantly over this period; young researchers are leaving the field.

New and effective treatments for Alzheimer's will not only save millions of Americans and their families from tragedy and threat to retirement security, but Medicare and Medicaid could yield savings of $60 billion annually if we find these treatments. NIH underfunding is a trend that cannot continue with the next presidential administration and Congress. There is too much at stake. At this time, there is no national policy or strategy in place to deal with this 21st century public health threat. As the presidential campaign focus comes to West Virginia, I hope you will join me in asking Sens. Clinton, McCain and Obama: If you are agents of change, you need to alter the course of Alzheimer's disease and make it a thing of the past. What is your plan?

Marks is the executive director of the Alzheimer's Association's West Virginia chapter. She can be reached at jane.marks@alz.org

Labels: Alzheimer's, Charleston Gazette, Clinton, election, McCain, medicaid, medicare, Obama, primary, research

Full page ad as run in the New York Times, Wall Street Journal, Washington Post, and Politico on March 18.

Labels: Alzheimer's Disease, Clinton, election, McCain, New York Times, Obama, primary, Wall Street Journal, Washington Post

Alzheimer’s Association releases new Facts & Figures report to the nation, calls on candidates for plans to address the growing burden of Alzheimer’s. View the report: http://www.alz.org/alzheimers_disease_facts_figures.asp

CONTACT:

Media line: 312.335.4078

Toni Williams: 202.638.8666

toni.williams@alz.org

Labels: Alzheimer's, Alzheimer's Disease, Clinton, debate, election, McCain, Obama, politics, primary

A lot of people I know are reading A New Earth by Eckhart Tolle and discovering a new consciousness. Oddly enough, a number of people I know with Alzheimer’s have already discovered this new consciousness but not through A New Earth. They discovered it through Alzheimer’s.

Huh?

Let me try to explain.

Following a diagnosis of Alzheimer’s, you are no longer an engineer, a teacher, an accountant. You are no longer a tennis player, a chess player, a piano player. You are no longer good at math. You are no longer good in the kitchen.

You ask yourself, “Who am I now?”
You ask yourself, “Has my real self died?”

You are no longer the YOU you used to be. You are having trouble even remembering the YOU you used to be. Your FORMER Self is gone. Alzheimer’s has greedily taken hold of your former Self, is clenching it with both hands, and won’t give it back. The loss of this former Self is experienced like a death. You grieve the death of your former Self.

But once the grief has passed, you may be able to see what is left, no longer obscured by the former Self. What remains is the REAL self.

Huh?

Here’s an excerpt from my next book, LIVING ALZHEIMER’S which speaks to this discovery and includes a quote from Eckhart Tolle’s A New Earth:

I'm nothing short of awed by Jay's transformation. Here's a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man. He is not angry, depressed, resentful, blaming, jealous, fearful, or in denial. How is this possible? How can he not be angry about the loss of his successful career, his identity, as an architect? How can he not be resentful about the fatigue and the loss of cognitive capabilities that interfere with his days? How can he not be consumed with fear about his future? Why doesn't he feel lost?

Some time after our conversation, I read every one of the books Jay recommended. I will forever be grateful to him for introducing me to this knowledge that has changed the way I look at the world and inhabit my own life. Thinking of Jay's transformation, I'm struck still while reading Eckhart Tolle's A New Earth. And I get it.

"Whatever they had identified with, whatever gave them their sense of self, is taken away. Then suddenly and inexplicably, the anguish or intense fear initially felt gave way to a sacred sense of Presence, a deep peace, serenity, and complete freedom from fear....When forms that you had identified with, that gave you your sense of self, collapse or are taken away, it can lead to a collapse of the ego, since ego is identification with form. When there is nothing to identify with anymore, who are you? When forms around you die or death approaches, your sense of Beingness, of I Am, is freed from its entanglement with form: Spirit is released from its imprisonment in matter...You realize your true identity as consciousness itself, rather than what consciousness had identified with. That's the peace of God. The ultimate truth of who you are is not I am this or I am that, but I Am."

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

Labels: A New Earth, Alzheimer's, Alzheimer's Association, Alzheimer's Disease, dementia, Eckhart Tolle, VOICE OPEN MOVE

John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.

Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.

As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”

She accepts the lovely rose and her favorite chocolates with polite pleasure.

He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.

She swats at him and screams.

“Mary, I’m your husband. I’m John, your husband.”

Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.

“Get out!” she yells and covers her face with her hands.

“I love you, Mary. I’m your husband, John. Look at me, I love you.”

He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.

Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”

After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.

John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.

To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!

John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship---

She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?

Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.

He has a box of chocolates. Her favorite. Would she like one?

And go from there.

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

Labels: Alzheimer's, Alzheimer's Association, Alzheimer's Disease, dementia, VOICE OPEN MOVE

I've started writing my next book, a nonfiction collection of conversations with people in the early stages of Alzheimer's Disease. Here's an excerpt from the Introduction--- Please feel free to comment. I'd love to hear what you think!

Alzheimer’s Disease.

Now close your eyes. What do you think of? Who do you see? For me, it’s an eighty-five-year old woman with short, white hair, thin, wrinkled skin, and polyester pants. It is forgetting when you ate breakfast and when you were born. It is forgetting where the bathroom is and where you live. It is forgetting the name of the United States President and the names of your children. It is forgetting your own name. It is my grandmother.

You might have imagined your own grandmother. Or your elderly parent. Maybe you don’t know anyone with Alzheimer’s. Maybe you imagined Gena Rowlands in The Notebook or Julie Christie in Away From Her.

Most of us know what Alzheimer’s Disease looks like. Or do we?

Like most people who come to know Alzheimer’s in a loved one, I’ve read and learned a lot about this disease, from the molecular and clinical to the self-help and how-to-care-for. But for the most part, what we know about Alzheimer’s is gleaned from experience with elderly people diagnosed well into the progression of this disease. Because we as a culture expect eighty-year-olds to be normally 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.

And unfortunately, once this disease marches past the beginning, we can no longer really know what that beginning was like. Beyond the beginning, clogged synapses, faulty neurotransmission, inflammation, and cell death take the upper hand. Beyond the beginning, those parts of the brain that mediate memory and language and that inform awareness and identity become increasingly inaccessible. People with Alzheimer’s who’ve deteriorated past the beginning stages can no longer remember the recent time period of their personal history that was ‘the beginning’. They can’t describe what it feels like to have Alzheimer’s Disease because those communications skills aren’t working. And more confounding, they may no longer be capable of understanding that they even have Alzheimer’s Disease.

We know what Alzheimer’s Disease is like from the point of view of the tireless, loving caregiver. We know what it is like from the point of view of the Hollywood director. But, what is having Alzheimer’s Disease like from the point of view of the person with Alzheimer’s? What does the face and voice of early-onset Alzheimer’s look and sound like?

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

Labels: Alzheimer's, Alzheimer's Disease, Away From Her, dementia, early-onset Alzheimer's, Living Alzheimer's, The Notebook

I delivered a healthy and beautiful baby boy (Ethan) on December 6 and have been a bit preoccupied (and sleepless) since. Between diapers and feedings and the holidays, I've been away from this blog for far too long. Thank you to all who sent me good wishes and blessings!

A generous and talented woman named Donna recently sent this poem in an email to the members of the Dementia Advocacy and Support Network International (or was it DementiaUSA?). I fell in love with it instantly, and she agreed to share it here. Thank you, Donna!

Memories by Donna Beveridge, age 65, diagnosed with probable Alzheimer's in August, 2007, from Saco, Maine

Memories.
I’ve taken them for granted,
assumed that we have a life-long relationship,
given them freedom to lie abed at will.

No longer
I ring the alarm,
open the blinds, pull back the comforter,
tumble memories out of bed and into sneakers and sweats,
insist that they, like me, exercise daily.
I, their trainer, monitor their fitness routines,
take attendance as they come and go.

I dislike clutter ordinarily, but I let my memories
Fill the corners of my life,
spill over my desk,
sprawl against doors,
fill up counters,
frolic on rugs.

I tuck memories into corners,
Arrange them in open drawers,
stack them on side tables.

I stuff my pockets with them
as well as my LLBean bag, and my backpack.
I hang them on my Christmas tree,
I plant them - a memory garden.

When memories wander out of sight,
I call them back,
Line them up in straggly rows,
Count them, categorize them
Tell them to stay put
While I hunt for those gone missing.

I find memories hiding
in my grandmother’s knitting needles,
in the smoke of my grandfather’s pipe,
in the hollows of my mother’s breasts,
in the harmonies of the songs my aunt and uncle sang

I find memories hiding
In the iron bed I shared in my foster home,
In the waves at the lake where I lived as a teen,
in the stories family told about us grandchildren,
in Nana’s Saturday night pork and beans.

I find memories hiding
In my children’s matchbox cars,
And in the pages of my teacher plan book.
I find a few memories in my underwear drawer,
And others in medicine cabinets,
and between rumpled sheets,
But none among my socks.

I saw a memory fly over the marsh yesterday
But it didn’t land, and the egret kept on fishing.
At sundown the memory returned,
hungry

A tiny memory
Slips out of Betsey’s mouth today in a smile.
She laughs then, and memories drop like red apples.
I polish each one on the hem of my shirt
and savor them on winter days,
apple crisp, warm with memory topping.

I don’t expect to find memories in diagrams and lists,
But they hibernate there,
Knowing I’ll forget them,
Until one spring day in the middle of a thaw
they break through the ice and flood the culverts.
I cup soggy memories in bare hands,
sip them, refreshed.

Some memories hide from me
In turtlenecks and bulky sweaters,
in the box of clothes regrettably too small.
They hide in the sweet sweatiness of my five year old grandson,
Deep in the fur of my fat cat, Shadow,
And in the purr of sleek, shy Idgy.

Memories hide
in tapioca pudding more often than grapenut pudding,
but rarely in broccoli.
They hide in a tube of lipstick in the glove compartment
of the Volks squareback from my hippie years.

On second thought
I needn’t hold so tightly to each memory.
It takes a village, you know, to raise a memory child.
Open your hands, my family, my friends,
palms up
I offer you my memories
on scraps of paper,
in rumpled envelopes,
in blurred photographs tied with leftover Christmas ribbons
or not.

I sprinkle memories over your shoulders
snatches of conversations, stories, and poems,
fragrant seasonings from my life,
flavoring yours.

Memories that linger I blow your way
Across a room, across a life,
Fragile memory bubbles in a fragile world,
Floating to you with my fervent wish
that you will keep them alive……….for me.

You’re at a party in the middle of telling a story about your favorite childhood toy, but you can’t for the life of you come up with its name.

“Oh, what’s it called?” you ask yourself as you rummage around in your brain.

This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.

“I know it begins with the letter K.”

Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.

“Kaleidoscope!”

The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”

Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.

If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.

So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.

“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:

“Kaleidoscope!”

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

Labels: Alzheimer's, Alzheimer's Association, Alzheimer's Disease, dementia, VOICE OPEN MOVE

This entry was written by my friend, Mike Donohue. Thank you, Mike, for sharing your voice.

I was diagnosed as having Alzheimer’s Disease. This is the worst possible diagnosis I could get, short of suffering a crippling stroke like my Dad or losing my eyesight. As I pass from conscious connection with Alzheimer's, I am told I will not know what is happening. The pain of it is suffered by those loved ones around me.

None of this spares me the pain I will visit on my wife: robbed of a partner in exchange for a ward and charged with the effort and the cost of caring for me. I am saddened for my children. I will likely not experience their progress in life, nor growth of my five grandchildren I now have and any more that may come. I will probably not be around or lucid if I am for their weddings and births of my grandchildren.

Although initially devastated by the diagnosis, I quickly arrived at this way of thinking about my diagnosis of Early Alzheimer's. I believe that things happen according to a plan. Whose plan? I do not know. My plan set in this lifetime it is not! Whether it is mine devised somewhere else, the plan of my higher power, or what, I have no idea. It is a plan followed by me in spite of me, taking me often into places and directions I would rather not be. Much of it has been painful. As I learned in Alcoholism, learned before recovery and learned after recovery, I am the better person for having experienced where I have been taken. It all turned out as it ought to have. All of the events have tied together in a definite pattern. I can see this now, realizing it retrospectively. It is seen in the serenity of my senior years which has been one of the best things about growing old. I no longer have challenges to meet, I have met them and my serenity is the result.

I have also known I was not finished. I hoped I was finished but knew I was not. I wondered what was yet to happen. It has been my view that I have not done as much for my family, my fellow man, my world, as I should have. I was troubled that I was not doing in this arena, saw others that were, and felt empty in my self in this regard. When I thought about it I reasoned, if I really believed I was living a plan, if my attitude was willing, the right thing for me to do would come along and I would do that. Although I wondered whether or not I was shirking or just fooling myself, the times I considered this, I was prevented by one circumstance or another from going right out and getting something started. It was in this that I at least felt a little peace about it.

When at peace I would think, I wonder what my next undertaking will be and when it will present itself. I honestly believed that and found serenity by relying on that. I believed I would fulfill the rest of my life with something more that would be meaningful for me. I would find something with which I could leave at least a little mark having helped others.

On June 29th, 2006, I learned what my next challenge is. It was in the doctor’s office when it presented itself. I have Alzheimer’s disease! It was presented to me then and there! What I do about it will be my measure of my last days. I have five to eight good years to find that out, maybe ten or twenty years if I am lucky. I pray to my Higher Power that I have the strength, the fortitude, to make the best of this time. I further pray that I may leave a mark because of this.

I know a widely-respected neurologist who practices at a prestigious, teaching hospital who once said,

“Treating dementia is like rearranging the chairs on the deck of the Titanic.”

And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.

Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.

But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?

Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?

In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.

There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”

But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.

We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?

Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.

What do we know without knowing any numbers?

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