Know the 10 Signs

#10 Changes in Mood and Personality

"My boyfriend would tell me I was forgetting conversations we had. I was forgetting certain things yet retaining others, so he accused me of "remembering only what I wanted to remember." He also told me I wasn't the same person. I wasn't acting like my "old self." I often became irritated and aggravated with many things which was unlike my normal personality.

With the help of Early Diagnosis and Intervention with medication and treatment, I found out I wasn't going crazy. I found medications to slow down the AD process and therapy to help me cope with my disease. I am still an active member of society, do volunteer work, help take care of my mom who, also has Alzheimer's disease, and am still able to take care of myself. I am able to live alone and function pretty well. I have been able to put all my affairs in order so that my daughter won't have to face that when I can no longer make those decisions. I am able to participate in clinical trials of new medications which may be disease modifying.

Early Diagnosis and treatment has helped me and my loved ones make the best of the situation."

-Lisa Carbo

Know the 10 Signs

#5 Trouble with Visual or Spatial Relationships

"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.

To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.

After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.

The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.

My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.

Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"

-Mike Donohue

Know the 10 Signs

#3 Difficulty Completing Familiar Tasks

"The first sign for me was forgetting and having trouble at work. I was trusting my brain to be there and denying that something was wrong. The problem with that I was forgetting too many things and I thought it was menopause. I saw my OBGYN and she said that all was well. I then went to my primary care doctor and we did blood tests. Everything came back normal.

As time went on, it was getting worse and my family, friends and co-workers were growing very impatient with me, especially when I missed dinners or events that were planned. Working as a meeting planner was a more specific problem: I was not able to multitask as I had been for years. I could not remember things without writing them down, and then I could not find the paper with the note on them. And that was that...I had Younger-Onset Alzheimer’s Disease...

It was a blow, but I am not the type of person that gives up that easily. Now, I am active in my community, educating others about this disease and getting involved."

-Karen Zimmerman

Know the 10 Signs

#2 Challenges in Planning or Solving Problems

"One of the first indications that something was awry was missing appointments that were on my schedule. Frequently, I put times down wrong, or failed to follow the time I had down correctly, arriving too early, late or not at all.

Now that I am diagnosed with Alzheimer’s, I keep two schedules to avoid missing anything. At one time I didn’t keep a schedule. A busy lawyer, I had every appointment, deadline and due date in my head.

With Alzheimer’s, I know I need to take these extra steps and it helps me be able to continue to be active and involved."

-Mike Donohue

When is it normal and when is it Alzheimer's?

Since the release of Still Alice, I've had the privilege of talking to a lot of audiences about Alzheimer's. One of the most common questions people ask me is:

"When I can't find my keys, how do I know if that's normal forgetting or a symptom of Alzheimer's?"

My quick and dirty answers are usually something like:

"Well, when you find your keys, are they on the table or in the refrigerator?"

and

"We all have trouble finding where we put our keys. It's worrisome if you find your keys and then can't remember what you're supposed to do with them."

Forgetting keys, names, how to get somewhere, how to do something--How do we know when it's normal and when it's Alzheimer's?

The Alzheimer's Association has put together the 10 Warning Signs List.

They also provide this phone number if you'd like to talk to someone about your concerns: 877 IS IT ALZ

My friend Kris recently shared one of her early warning signs (warning sign #4) with me:

My biggest tell-tale sign was when I'd gone shopping with my husband, and we went to a Best Buy store. I was looking at some CDs, and my husband had gone off somewhere else, and I looked up from the CDs, and I didn’t know where I was or how I had gotten there. It's kind of hard to be in a Best Buy store and not know you’re in a Best Buy store, you know, with all the Best Buy signs everywhere. The only way I can describe it, and it’s so funny because in your book it was like this, it’s like an out of body experience.

I remember going out of the store to look at my surroundings, and I looked at the sign, but I couldn’t read that it was Best Buy. I saw the sign, but I couldn’t put together that I was at the Best Buy store. So I remember sitting down on the steps in front of the store and thinking, 'Well, I got here somehow, I’m just going to have to figure out how I got here.'

I sat there for a while and then went back in the store, and I recognized my husband. And I thought, 'OK. I got here with him, I’m still not sure where I am, but I got here with him and I’m okay because I know I can get home with him.' And I didn’t say anything to him. I just followed him out to the car, got in the car, went home, and that night I still could not remember where I had been.

I didn’t want to alarm my husband about it, so just jokingly I said to him, 'You know, I know we went out today, but I can’t remember where we went.'

He said, 'We went to Best Buy.'

And I said, 'Oh, yeah.'

How old were you?

46.

When I was diagnosed with Alzheimer's, I was relieved because now I knew there was a name to it. I know there’s no cure, and it broke my heart, but by the same token, now I knew what I was dealing with and that I wasn’t crazy.

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

Know the 10 Signs

#1 Memory Changes that disrupt Daily Life.

"There was one episode with my memory that scared me a great deal. When I was trying to recall something, in my mind, a large black cloud appeared, covered the answer and it was gone.

I was on a bus on my way to visit my daughter when an elderly woman sat next to me. We began to chat as strangers do. During the conversation she asked where my daughter lived. I got out “Allen…” and that black cloud enveloped the rest. And I stammered, "No it's not Allentown, that's in Pennsylvania. It's not Allenberg, I never heard of that. It's Allen something or other." I must have looked as upset as I felt, because she patted my hand and said, "That's all right dear, we all forget things as we get older."

I know now that the black cloud wasn’t just a sign of aging. Once I was diagnosed and starting getting treated for Alzheimer’s, the black cloud disappeared."

-Mimi Steffen

Early Detection Matters

This week, the Alzheimer’s Association is launching its new Early Detection campaign, “Know the 10 Signs.” We’ve asked our Early Stage Advisors to contribute some of their personal experiences recognizing the signs of Alzheimer’s. These courageous individuals have all endured the arduous process of discovering their disease and have volunteered their energy to the Alzheimer’s Association to advance the most effective step in Alzheimer’s treatment: Early Detection.

Every day this week, we’ll be posting real stories of diagnosis and the relation of each to the 10 Signs of Alzheimer’s disease. For more information on the 10 Signs, please contact the Alzheimer’s Association at 877-IS IT ALZ (877.474.8259) or visit alz.org/10signs.

It's All In How You Hold It

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I ask him, “What did it feel like to hear those three words---You Have Alzheimer’s?”

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

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.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, that’s impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

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

Talking with James

A couple of years ago, I sat down and talked with my friend James about his life before Alzheimer's.

James used to be the Director of IT for a Fortune 500 company. At any given time, he was responsible for twenty-five to thirty projects on a global basis, he received over a hundred emails daily that required responses, he attended six to ten meetings each day, and he worked anywhere from sixty-five to one-hundred hours each week. He likened his job to the corporate version of an air traffic controller. A self-proclaimed adrenaline junkie, he thrived in this kind of intense environment and was consistently ranked in the top ten percent of their 70,000-person workforce.

He rattled off descriptions of his work life with effortless enthusiasm. He told me that it was a really exciting time in his life, that his work was great and fabulous and that he loved it. I was undoubtedly convinced.

And then his Alzheimer’s symptoms began to surface. James’ first and most salient symptom was exactly what we all think of when we think of Alzheimer’s Disease –forgetting. But James was only 43 years old at the time. Forgetting doesn’t wave its arms and scream Alzheimer’s at the age of 43. Both James and his primary care doctor blamed his high-pressured job. He needed to slow down. Relax. His doctor thought he might be depressed. James didn’t think so. He had a lot of energy, and aside from forgetting things, he felt like himself. But he trusted his doctor and went on Wellbutrin.

The forgetting continued.

What kinds of things was James forgetting? He forgot to go to meetings, that there ever was a meeting, that it was he who’d actually called the meeting, people’s names, people he’d known for years, where he’d placed needed documents.

What did this forgetting feel like?

“I think of my mind as a desk, and all the papers on it are my memories, all the things I’m keeping track of. It’s as if someone sneaks up when I’m not looking and takes random pieces of paper off my desk. When I turn back around and look, it’s as if those pieces of paper never existed. I won’t even realize they’re gone until whatever they’re needed for comes up. Then I’ll have no idea where they are. They’re gone. That’s what was happening with my memories. I wouldn’t realize my memories were gone, and I would maybe even argue that they weren’t gone until they were needed, and then I wouldn’t have anything to draw on.

I also lost my ability to multitask. When you multitask, you keep information in place holders in your mind. You’re using your short-term memory. I think of it like an air traffic controller, keeping track of where all the planes are all the time. Even when you’re focusing on one particular plane, you have to keep the other planes in mind. Part of what made me successful as a director was my ability to work on twenty-five to thirty projects at once. I was losing sight of meetings, documents, conversations, the existence of entire projects.”

His planes were starting to collide, wander off the radar screen, and hit the ground.

“I also lost my sense of time. Two hours would feel like twenty minutes.”

This is also a symptom of forgetting. The way we perceive the passage of time requires the ability to string together memories of what happened between a time ‘then’ and another time ‘now.’ If memories are missing, stolen off the mental desk, this tends to shrink that time period.

With all this forgetting at a job that required a high level of remembering, James was beginning to fail at work. I wondered if maybe home life, where he didn’t have the same kinds of multitasking demands placed on him, was more forgiving.

What was happening at home?

“I would get home and be just exhausted. I’d hardly be able to speak because I was so tired. I think it was because my mind was working so hard to get through the day at work, that by the time I got home, my mind literally had nothing left. I would sit there and be blank for a while. It had to be frustrating for my wife, to see me spending all my energy and passion at work and having nothing left at home. That was really difficult on my family, wondering why Dad’s disengaged, why Dad doesn’t want to do anything. To them, it probably looked like depression. But it turns out it was something else.”

After an arduous journey through a series of medical tests that excluded every other possible known cause of forgetting, James was ultimately diagnosed with “the only rock left on the table.” Alzheimer’s Disease. James was forty-five years old.


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

Association Statement on ASG Report

The Alzheimer's Association commends the independent Alzheimer's Study Group (ASG) on their report released today, “A National Alzheimer’s Strategic Plan: The Report of the Alzheimer’s Study Group”. The report explains the looming national crisis created by Alzheimer’s disease and offers real solutions for the nation.

Alzheimer's Association President and CEO Harry Johns, along with members of the Congressional Task Force on Alzheimer’s Disease called for the creation of the Alzheimer’s Study Group in July of 2007. Today the Alzheimer's Association is pleased to receive the report on behalf of the larger Alzheimer community.

“You can be assured that the Alzheimer’s Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report, says Johns, “There must be an investment in Alzheimer’s proportionate to the current and future impact of the disease. This investment must be far more than the grossly inadequate funding today.”

The ASG report confirms that we will spend nearly $20 trillion on Alzheimer’s by the middle of the century. That’s equal to 25 stimulus bills — more than one stimulus sized bill every other year between now and then.

Johns continues, “For the federal government, state government and families – the economic impact of Alzheimer’s is devastating. We must seize the solutions presented in the ASG report and invest in initiatives that result in better coordinated care, more supportive services for families and ultimately the prevention of the disease. An investment in Alzheimer’s is not only good social policy, it is an economic necessity.”

The Alzheimer's Association also thanks ASG co-chairs Former Speaker Newt Gingrich and Former Senator Bob Kerrey, ASG members Christine Cassel, Meryl Comer, Steven E. Hyman, Henry McCance, Mark McClellan, Sandra Day O’Connor, James Runde, David Satcher, and Harold Varmus, and ASG Executive Director Robert Egge for their outstanding work.

The Alzheimer’s Association
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.

Contact:
Alzheimer's Association
Media line: 312.335.4078
E-mail: media@alz.org

Alzheimer's and Dementia Triple Health Care Costs

Washington, D.C., March 24, 2009 – Total healthcare costs are more than three times higher for people with Alzheimer’s and other dementias than for other people age 65 and older, according to the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures, released today.

In the new report, total healthcare costs are calculated as per person payments measured from all sources. Medicare payments alone are almost three times higher for people with Alzheimer’s and dementia than for others age 65 and over; Medicaid payments alone are more than nine times higher.

“With the country facing unprecedented economic challenges and a rapidly aging baby boomer population, now is the time to address the burgeoning Alzheimer crisis that triples healthcare costs for Americans age 65 and over,” said Harry Johns, Alzheimer’s Association CEO.

“It is widely understood that addressing health care is key to the country regaining its financial footing,” continued Johns. “And there is no way this can be done without improving Medicare and Medicaid which Alzheimer’s directly impacts. A strategy to immediately confront Alzheimer’s has the potential to save millions of lives and billions of dollars by reducing the burden on Medicare and Medicaid.”

People with Alzheimer’s are high consumers of hospital, nursing home and other health and long-term care services, which translates into high costs for Medicare, Medicaid and millions of families. As families struggle to survive in a deepening recession and as states grapple with budget shortfalls, Alzheimer’s disease threatens to overwhelm them both. Most people with Alzheimer’s also have one or more additional serious medical conditions, such as diabetes or coronary heart disease. Their Alzheimer’s greatly complicates the medical management for these other conditions and drives up costs significantly.

According to the Facts and Figures report, in 2006:
 Medicare beneficiaries with diabetes plus Alzheimer’s or another dementia had 64 percent more hospital stays than those with diabetes and no Alzheimer’s, and their average per person Medicare costs were $20,655 compared to $12,979 for beneficiaries with diabetes but no Alzheimer’s or dementia.

 Medicare beneficiaries with coronary heart disease and Alzheimer’s disease or another dementia had 42 percent more hospital stays than those with coronary heart disease and no Alzheimer’s or dementia, and their average per person Medicare costs were $20,780 compared to $14,640 for beneficiaries with coronary heart disease but no Alzheimer’s or dementia.

With family members providing care at home for about 70 percent of people with Alzheimer’s disease, the ripple effects of the disease can be felt throughout the entire family. According to Facts and Figures, in 2008, nearly 10 million Alzheimer caregivers in the U.S. provided 8.5 billion hours of unpaid care valued at $94 billion. In addition to the unpaid care families contribute, the report also reveals that Alzheimer’s creates high out-of-pocket health and
long-term care expenses for families. Out-of-pocket costs that are not covered by Medicare, Medicaid or other sources of insurance are 28 percent higher for Medicare beneficiaries with Alzheimer’s than those without. Individuals with Alzheimer’s and other dementia living in nursing homes or assisted living facilities incurred the highest out-of-pocket costs – an average of $16,689 a year.

Growing Prevalence of Alzheimer’s Disease and Dementia
According to the report, there are 5.3 million Americans living with the disease and every 70 seconds someone in America develops Alzheimer’s disease. By mid-century someone will develop Alzheimer’s every 33 seconds. By 2010, there will be nearly a half million new cases of Alzheimer’s each year; and by 2050, there will be nearly a million new cases per year.

Alzheimer’s is the sixth leading cause of death in the country, surpassing diabetes; it is the fifth leading cause of death among individuals 65 and older. From 2000 to 2006, while deaths from other major diseases dropped -- heart disease (-11.5 percent), breast cancer (-.6 percent), prostate cancer (-14.3 percent) and stroke (-18.1 percent), deaths from Alzheimer’s disease rose 47.1 percent.

“Currently, there are no treatments that can prevent, delay or reverse Alzheimer disease and research funding has been stagnant for the past six years. With the first baby boomers turning age 65 in just two short years – and entering the arena of increasing risk for developing Alzheimer’s – an aggressive plan is needed now to address the threat of this disease. There are too many lives, too little time and too much at stake for anything less,” Johns said.

Implications for States
Demographic trends indicate that the number of affected individuals and families will grow significantly in the years to come, not only having a profound effect on families and health systems but on state budgets as well. In order for states to plan for this rapidly growing population, they must first have reliable information about the characteristics and needs of their residents who are coping with Alzheimer’s or other dementia. An existing survey process is the easiest way to obtain this important information. The Behavioral Risk Factors Surveillance System (BRFSS) is an annual state public health survey done in conjunction with the Centers for Disease Control and Prevention (CDC). Since 2003, some states have added questions about caregiving for people with Alzheimer’s and other dementias in their BRFSS surveys.

The new Facts and Figures report highlights the BRFSS survey findings from the states of Washington and North Carolina. The BRFSS survey allows residents to say for themselves what their challenges are. For example in Washington, 48 percent of the caregivers for individuals with memory loss or cognitive impairment revealed that stress was the greatest difficulty they faced. Beginning this year, an approved set of family caregiving questions is available for all states to add to their BRFSS survey, and another set of questions on cognitive impairment is being developed for 2010.

Mild Cognitive Impairment (MCI) – An Emerging Issue
Experts believe that early detection of Alzheimer’s disease and early intervention with improved therapies provides the greatest opportunity to delay or stop additional damage to the brain. To that end, the new report highlights the emerging role of a condition known as mild cognitive impairment (MCI). A person with MCI has problems with memory, language or other essential cognitive functions that are severe enough to be noticeable to the individual and others, but not severe to interfere with daily life.

There is consensus within the scientific research community that intervention with any
disease-modifying treatment should occur as early as possible, ideally even before symptoms appear. Individuals with MCI have a higher risk for developing Alzheimer’s disease, but more research is needed to determine why some people with MCI go on to develop Alzheimer’s and why some do not. By participating in scientific studies and clinical trials, individuals with MCI will help to speed progress in finding ways to prevent or cure Alzheimer’s by providing scientists with the opportunity to test new Alzheimer treatments and learn faster whether or not the treatments work.

“There is a rich, diverse variety of treatment possibilities for Alzheimer’s that scientists are exploring, offering great hope that drugs that may slow or even reverse disease progression could be on the horizon – saving millions of dollars in public health programs,” said Ronald Petersen, M.D., Ph.D, the Alzheimer’s Association’s Medical Scientific Advisory Council Chair. “A national strategy and a sustained commitment to Alzheimer research is what is needed to today to make Alzheimer survivors tomorrow.”

The full text of the Alzheimer’s Association’s 2009 Alzheimer’s Disease Facts and Figures can be viewed at alz.org. The full report is scheduled to appear in the Mary 2009 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 5, issue 3)

The Alzheimer’s Association
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.

Building Neural Roads

Whether you have Alzheimer’s or are of a certain age that you’ve started routinely forgetting where you put your keys, you’re probably hearing a lot about the benefits of “exercising your brain.” We hear this “use it or lose it” philosophy mentioned frequently in sound bytes from medical experts, but what are they really asking us to do? And why? Are they just trying to get us to do lots and lots of crossword puzzles?

Here’s what they mean. Let’s think of the neurons in your head as roads, and let’s say you’re trying to remember a piece of information. Let’s say you’re trying to remember my name: Lisa Genova. When you think, “What is her name?” your brain starts looking for the road that will take it to the answer. You might travel down the road “VOICE OPEN MOVE Blogger” to get to Lisa Genova.

If you’ve only been to this Blog once, and that’s the only piece of information you know about me, you might have a hard time at first finding that one and only road. And because it hasn’t been well-traveled, the road might be small, unlabelled, maybe not even paved. It might take you a few minutes (or all day!) to remember my name.

But if you start going to my Blog over and over, if you travel this particular road over and over, or in other words, if you practice and rehearse this information, “Lisa Genova is the VOICE OPEN MOVE Blogger,” then the road becomes stronger. It becomes simple to find with a nicely labeled street sign, and it’s now wider and paved. After many experiences with “Lisa Genova is the VOICE OPEN MOVE Blogger,” this road becomes familiar territory, smooth and easy to travel on. You now know my name and can remember it easily.

But what happens if you are in the earliest stages of Alzheimer’s, and amyloid-beta is starting to clog some of your synapses? Imagine amyloid-beta as a roadblock, keeping you from traveling down that road that leads to the information you’re looking for. What if amyloid beta is blocking the “VOICE OPEN MOVE Blogger” road to Lisa Genova. If this is the one and only road to my name, and it is blocked, then you can’t retrieve my name. Now when you ask yourself, “Who is the VOICE OPEN MOVE Blogger?” you cannot remember no matter how hard you think. The information is inaccessible. Forgotten.

But let’s say you paved more than one road to my name. Let’s say you also built “Author of Still Alice Street” and “Neuroscientist from Harvard Avenue” and “That Italian Scientist/Author who lives on Cape Cod Boulevard.” Now you can have a roadblock on “VOICE OPEN MOVE Blogger Road” and still have three other ways to get to my name. These other roads may not be the most direct routes to my name if you haven’t traveled them as much, but they’ll still lead you to Lisa Genova. You can still remember me.

The more connections you make to a piece of information (the more roads you build) and the more you use or rehearse that information (the more you travel those roads), the more able you’ll be to detour clogged connections (amyloid beta road blocks), and remember what you’re trying to remember.

Urgent Alert from the Alzheimer's Association CEO

It is possible that there has never been a moment in America with so much potential to either advance or diminish Alzheimer's research and care. Our nation faces unprecedented times and, with that, comes an unprecedented opportunity to seize this moment and insist our leaders make a greater investment in finding ways to effectively treat, cure, and prevent Alzheimer's disease.

There are an estimated 5 million people who already have Alzheimer's. As many as ten million people care for them. The disease has risen to the 6th leading cause of death in the U.S. Millions more will experience the devastating effects if we don't stop Alzheimer's now. Components of the stimulus package and health care reform could benefit them.

From March 23-25, the Alzheimer's Association will take its fight to Capitol Hill for its annual Public Policy Forum.

It is critical to our mission, to the people we serve, and to society at large to make this Public Policy Forum louder than ever. We need advocates from every state and from every congressional district. We need people with the disease, their caregivers, health care professionals, business leaders, and scientists to raise their voices and educate our policy makers so they know that an investment in Alzheimer's is an investment in the economic health of the nation and the personal health of millions.

The volunteers and staff of the Alzheimer’s Association are working hard to make as much noise as possible about key Alzheimer's issues and to make it as easy as possible for people to attend the Forum. Early-bird discounts and group discounts are available.

Please seize this moment and take an extra step this year by attending the Alzheimer's Association Public Policy Forum in Washington, DC, March 23 - 25. Our elected leaders need to hear your voice.

Never before has so much been at stake nor has time to help families and advance science been more precious. We need to demonstrate both in numbers and in facts why Alzheimer's matters. I look forward to seeing you, and all the others you'll recruit, in Washington.


Harry Johns
President and CEO
Alzheimer's Association

Please contact the Alzheimer's Association at info@alz.org

Transcending Life as a Flowerpot

Today's post is a beautiful article written by Phil Bolsta. Thank you, Phil, for sharing this with me.

On a recent Thursday night, my dad slept in his own bed in his own home for the last time. He just didn’t know it. He probably never will. He was to spend Friday night—and surely the rest of his life—in a nearby nursing home.

His memory had been failing for at least a decade but it wasn’t until a warm September evening six years ago that I truly became alarmed. In my mind, it was the night he veered off the main highway of life and began weaving erratically down Alzheimer’s Avenue.

He had headed the stats crew for University of Minnesota football games for forty years, and as was his custom, he was going to sleep over at my metro-area townhouse after the game rather than drive an additional seventy miles to his home in St. Cloud. I didn’t expect him until after midnight; at a quarter to one, the phone rang. He was lost. He was calling from the Hopkins House Hotel a couple of miles away. I cheerfully told him it was no problem, that all he had to do was head east on Highway 7. He said he didn’t know which way east was, which startled me. I then heard five words that sent a chill up my spine. In a soft, sweet voice, he said, “I’ll never make it, hon.” I paused for a moment, then said, “I’ll be right there.” I drove over and he followed me home.

It was another couple of years before he stopped driving altogether. A year after that, my mom began bringing him to the St. Cloud Veterans Administration Medical Center for adult day care. it was a godsend for both of them. He loved the staff, loved to swim and exercise and, best of all, loved to while away the time working on arts and crafts projects. My parents’ house is filled with these little treasures. A pink ceramic piggy bank he painted stares happily down at me from a shelf as I write this.

He was very happy at the V.A. until just a couple of months ago. When he no longer could follow simple instructions and began needing one-on-one attention even to color a picture, the staff gently told my mom it was time. At home, when he was unable to shower in the morning without help, my mom knew she had run out of options. With a heavy heart, she drove him to the nursing home Friday morning.

Lately, I’ve been thinking a lot about a man named Roger Delano, who contracted a rare and incurable condition called transverse myelitis, an inflammation of the spine that causes paralysis. Delano, who recounted his experience in Self-Realization magazine, said he was unfazed when a doctor told him he would never walk again. Indeed, thanks to his unshakable faith, he was able to walk out of the hospital under his own power nine days later. Here’s what he wrote:

I knew that everything that was happening to me was up to God, that He was the only healer. I felt safe, knowing I was surrounded by the overarching mantle of His perfect care. Whatever God brought to me, I wanted. Even if I retained all of the mobility of a flowerpot, it didn’t matter. I was still the same, the vehicle of expression had changed, that’s all. A flowerpot can still hold a beautiful flower.

Some would say that my dad’s slow descent into oblivion—into flowerpothood—is an unspeakable tragedy. I prefer to view it as the natural unfoldment of a divine plan, the details of which I am not privy to. As Richard Bach so eloquently stated ,”The mark of your ignorance is the depth of your belief in injustice and tragedy. What the caterpillar calls the end of the world, the master calls a butterfly.”

As my dad slips ever more deeply into his cocoon, I know the glimmer of recognition in his eyes will soon begin to flicker and fade. But that’s okay. With a hug, a kiss on the cheek and a shoulder rub, I can still communicate with him through the language of the heart. Besides, I will know who he is—and that he will forever be who he always was.

And when the day comes that the changeless, eternal essence of who he is bursts forth, free to soar once again, I will hit my knees and thank God for giving me the gift of being my father’s son.

Phil Bolsta is the author of Sixty Seconds: One Moment Changes Everything and writes a wonderful blog called Triumph of the Spirit

What Rich Hopes For

In the picture I’d seen of Rich on the internet prior to meeting him, he has short brown hair and a full beard covering his face. He’s wearing a white T-shirt under a denim blue, button-down shirt. He is not smiling. He looks menacing. It occurs to me that the photograph could pass for a police mug shot!

In person, he appears nothing like this unflattering picture of him on the internet. Rich is blond and smiles with blue eyes that are kind and sparkle. His face is clean-shaven, smooth and pink, the kind of gentle face my grandmother would’ve unabashedly approached and patted on both cheeks while saying, “Aren’t you handsome?” He looks at least a decade younger than his online picture and even younger than he is. Rich is fifty years old.

I learn that Rich has a masters degree in journalism and was the managing editor at a major newspaper for four years when his first symptoms began. It had been his job to assign stories to writers and photographers and edit stories. He made sure everything came together. He was highly competent and loved his job. He loved the written word.

Suddenly and inexplicably, Rich became tired, the kind of abnormal tired that sleep could not restore.

“My job typically needed me twelve hours a day, six to seven days a week. I’d go to work and last at my desk for ten minutes.”

He was diagnosed with Chronic Fatigue Syndrome. He could no longer work. Everything stopped.

“I know fatigue is a part of Alzheimer’s disease, and I know this disease is very strange and shows up differently for different people. But I still don’t know if the fatigue was due to Alzheimer’s or something else.”

His next symptom didn’t fall under the classic heading of ‘forgetting’ either.

“I started experiencing auditory hallucinations. These are very disturbing. I’d be in another room, and I’d hear the TV on, but I wouldn’t remember turning the TV on. I’d go in the other room, and the TV wasn’t on. I’d think, ‘Why am I hearing the TV?’ So I’d turn the TV on. Now I’d hear the actual TV AND the TV that I was hearing in my head.

Or I’d be listening to the stereo to a CD that I’ve been listening to for thirty years, and I know well what it sounds like. Then this harpsichord music would begin playing over it. And I’d think, ‘Well that shouldn’t be there, that doesn’t have anything to do with this!’ So I’d turn it off, so the CD music wasn’t playing anymore, but the harpsichord music was still there.”

About half of people with Alzheimer’s disease experience auditory and visual hallucinations. But Rich didn’t know this at the time.

“Then I was getting lost. I’ve pretty much lived in Los Angeles for most of my life and, I’ve been driving since I was sixteen years old. I was going to places that I’ve been to a thousand times, and I was just completely getting lost and not knowing how to get back. And again, I know this city like the back of my hand. I know it’s a complicated city, it’s not like living in a small town, but you drive Los Angeles. I went to school at USC. I know this city. And I was getting off the freeway and not knowing where I was. I was getting freaked out. My doctor just kept poo-pooing it and dismissing me. He really just didn’t listen to me.”

His doctor told him he was too old to have schizophrenia. He told him he clearly wasn’t depressed. Rich knew what he didn’t have. But he didn’t have any answers either.

So how did you get to a diagnosis of Alzheimer’s?

“My insurance changed, and I saw a new doctor and told him what had been going on. He said, ‘I don’t like the way this sounds’ and sent me for an MRI, a PET scan, and neuropsychological testing.

So I went and had the MRI and the PET and didn’t know the results. Then I went for the neuropsych testing which was eight hours a day for two days, and it actually spilled over, so it was probably a little more. It was exhausting. This may sound funny, but while I was taking the test, I was blowing it, but I didn’t know it. And she (the woman who administered the test) didn’t give it away. She just kept saying, ‘Good! Great!’ Encouraged by this, I would continue reading passages and answering questions. I thought I was acing the test! I wasn’t aware of this at the time, but she had me read at the twelfth grade level, and I got all the answers wrong. And she just kept moving down—eleventh grade, tenth grade, nineth, eighth, seventh. She stopped when I could finally answer some of the questions right, somewhere at grade school level. I was completely unaware that I wasn’t getting them all right.

At the end of the last day of testing, she had her report and my doctor had the scan results, and we all had the conversation. The MRI was clean, but the PET scan showed atrophy and hypoperfusion in the frontal, temporal, and parietal lobes. And all the mistakes I’d made in the neuropsych tests made sense in terms of where the deficits were on my PET scan. The doctor told me I had Alzheimer’s disease.”

What did hearing those two words do to you?

“I was really devastated. This was never on my radar at all. I was thinking brain tumor. Not that I wanted one, of course, but that’s what I was thinking.”

How did your life change after diagnosis?

“Emotionally, I went to a very dark place. I don’t talk about this too much, but I really did consider suicide. My mind went to where most people’s minds go when they think of Alzheimer’s. I kept thinking of lying in a bed somewhere, and I didn’t want to. So I thought, ‘Why not just cut to the end now?’ For about two months, I was in really bad despair. Then I talked with Michelle (the Director of Programs at the Los Angeles Chapter of the Alzheimer’s Assocation). She spent a couple of hours with me and listened to me and referred me to an early stage support group. That was really the turning point for me, having a place to connect with other people. That very first support group, I met Jay, and we went to lunch. We just have this connection, that kind of bond with someone where you’re able to talk openly about what you’re going through.”

Through his support group in Los Angeles, through online support groups, and through the Early Stage Advisory Panel for the National Alzheimer’s Association, Rich has forged many new and intimate relationships with others who have young onset Alzheimer’s. Finding others navigating similar waters gave Rich what he needed—real life examples of people living with Alzheimer’s. Not lying in a bed somewhere.

How did your existing relationships change after diagnosis?

“The person who has known me the longest has had a really hard time with this. She kept saying, ‘You don’t have this. Don’t say it. They’re wrong.’ Whatever process I had to go through to accept my diagnosis, get beyond my own denial, and deal with it, it was painful. But I went through it, and I accept my diagnosis. I want to tell people like her, ‘Don’t make me try to convince you for fifteen minutes that I have Alzheimer’s!’ But I have to go through that with people. With this one friend of mine, I had to keep going through this with her. She just wouldn’t believe me.

Then, I’ll tell her a story about me forgetting something that could never be mistaken for normal, and she’ll go to the other guardrail. Now she’ll say, “You can’t live at home alone anymore! You can’t be taking care of your mother! You need to sell your house!” Suddenly, I’m completely incompetent. And before that it was all, ‘There’s absolutely nothing wrong with you’ over and over. There’s no gray area. It’s just either or.”

I think this is a hard thing for people who aren’t familiar with Alzheimer’s Disease to understand, that it isn’t zero to end stage. When you were first diagnosed, your thoughts went straight to being in the fetal position in a bed somewhere, right?

"Right. I’ve learned differently."

Tell me what a good day is for you.

“A good day is going to my support group, meeting with friends, staying connected with people. I like reading the New York Times. It makes me feel connected to the world. But when I read the newspaper now, it takes me so long to read it. I’ll read an article and two minutes later have no comprehension of it. So I’ll have to read it again and again and again. It’s really frustrating, especially because of what I used to do for a living. I used to not only read stories but edit them and make them better. So it’s really disconcerting to me. Audiobooks are somewhat easier. I sometimes put things on my iPod and listen to them. I sometimes have better recall aurally. And if I like something, I’ll put it on again. And it’s almost as if I haven’t heard it before. That can be nice because it’s like experiencing something all brand new.”

What did you hope for your future before Alzheimer’s disease?

"My dream was to live in New York and work as a journalist for the New York Times."

What do you hope for now?

"A cure."

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

There is a Santa Claus

In this season of giving and sharing, I'd like to share with you this wonderful story written by my friend, Jade Angelica, founder of Healing Moments---

Yes, Virginia, there is a Santa Claus by Jade Angelica

It was the Christmas season. As I walked down the long corridor admiring the festive holiday decoration, I noticed Virginia. She appeared restless and agitated. As I passed by her chair on my way to the craft room, Regina leaned forward and reached out to me with her small, delicate hand.

Almost whispering, she said, “Can you come here? I have to ask you something.”

Moving close to her and taking her reaching hand into my own, I bent down and looked into her eyes. “OK,” I said.

With grave sincerity, she asked, “Is Santa real?”

From the urgency of her expression and the firmness of her grip, I knew the answer to this question was deeply important to Virginia. I also knew, instinctively, that in this moment, the answer to her question was YES.

“Yes,” I said, returning her firm grip. “Yes, Santa is real.”

She relaxed her grip ever so slightly and replied, “I thought so. But they are trying to tell me there isn’t one.”

“Who’s telling you this?” I asked.

“Well, I don’t want to say,” she replied. “I don’t want to get anyone in trouble.”

“Oh no. You mustn’t tell then,” I said, reinforcing her choice to protect the doubters.

Still clearly upset by the quandary, Virginia leaned closer to me and asked, “But what should I do now?”

Taking both of her hands into mine and looking deeply into her eyes, time stopped for me. It was moment of true connection with Virginia when I replied, “You just keep believing. You just keep believing.”

“Yes.” She took a breath. “Yes. I’ll do that.”

“Just keep believing.” I repeated this over and over like a mantra.

“Thank you,” Virginia said, her sweet smile revealing a row of missing front teeth. “I feel so much better.”

She let go of my hand and sat back in her chair with a sigh of relief, peaceful at last.

Virginia is not the real name of the one hundred year old woman who asked me if Santa is real. I didn’t know her name when we spoke. It’s possible that she didn’t know her name either. Virginia lives in a nursing home on the same floor as my mother. Both women suffer with Alzheimer’s Disease.

Receiving a question about Santa’s existence from a woman who is one hundred years old caught me by surprise, and at first I wasn’t sure about how to respond. Very quickly, however, I remembered the importance of being present in this moment and the healing implications of meeting person’s with Alzheimer’s in their current reality, which for Virginia might have been Christmastime, 1915.

As I reflected on my conversation with Virginia, I realize it was both an endearing and a profound experience for me. After I left her and walked on toward the craft room to work on a project with my mother, I noticed that I felt better, too…. more peaceful, more joyful.

I also felt inspired. From the intensity of her question, Virginia could have been asking me if there is a God. Given the course of Alzheimer’s Disease, every person afflicted with Alzheimer’s and their families and friends touched by this illness might have wondered about this from time to time. Or, out of her history and the circumstances of Virginia’s life – or any of our lives – we might sometimes wonder if there is really a reason to hope – or if there is justice or love, or if there will ever be peace in the world. We all might have doubts.

Everything about this encounter was a surprise for me: the question of Santa’s existence posed by a woman one hundred years old; knowing with certainty that “Yes” was the healing answer; and the power of my own words to bring comfort to Virginia in a time of confusion. Mine was a faithful reply: In the face of doubt and fear and resistance, just keep on believing in all things good.

After Mom went to bed, I looked for Virginia to say good night, but I couldn’t find her anywhere. I’m hoping she slept peacefully that night, still believing in the Good Giver of Gifts. I did.

For more information about Healing Moments, visit www.HealingMoments.org

What's Your Motto?

I've been doing a lot of pre-publication 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

" Whatever you can do, or dream you can, begin it. Boldness has genius, power and magic in it." Goethe.
--Chuck Jackson

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

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 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

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

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?”

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

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.

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

Alzheimer's Diagnosis

Get a Web Ribbon

Alzheimer's jumps to 6th Leading Cause of Death

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.

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 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

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
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."

Mother's Day Tribute

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!

Flowers for Mother's Day!

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!

California Asks The Question

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

An approaching epidemic: Alzheimer's research underfunded

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

Senators Clinton, McCain and Obama:

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

Alzheimer’s Association releases new Facts & Figures report

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

Alzheimer's: A New Earth

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

Happy Valentine's

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

The Beginning

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? I see an eighty-five-year old woman with short, white hair, wrinkled skin, and polyester pants. I see her forgetting when she ate breakfast and when she was born. Forgetting where the bathroom is and where she lives. Forgetting the name of the United States President and the names of her children. I see her forgetting her own name. Forgetting me. I see 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

Memories

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.

Finding Your Kaleidoscopes

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

My Next Challenge

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.

Treatment Without Numbers

I know a widely-respected neurologist 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

The Valley of the Baby Dolls

I recently read ‘DANCING WITH ROSE: Finding Life in the Land of Alzheimer’s’ by Lauren Kessler. In it, she reveals the inner life of an Alzheimer’s care facility. I liked so much about this book but want to share one part in particular for now.

Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’

“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”

She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.

My grandmother who had Alzheimer's did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.

The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”

My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?

I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?

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

Emotions Unchecked

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

Alzheimers Disease…….What’s It Really Like?

The following was received by Mony De Leon at NYU, and forwarded to the Alzheimer's Association. Please take this powerful call to action to heart.

I would like to dedicate this in honor of my Beloved Mother, diagnosed with Alzheimer’s Disease, who passed away April 22, 2006. Just exactly how many people are familiar with this horrible disease? Some may say they have never heard of it. Others may say it’s “hardening of the arteries.” Some may even say it’s just old age “creeping in.” But, the real truth of the matter is, it’s the most debilitating, demoralizing, destructive, and devastating disease within existence.

Does anyone really know what a person with this disease goes through? How they spend their hours, their days, their nights, their very existence? Just once, we should try and view the world through their eyes. Just once, we should walk the path they walk. And just once, we should be told we can no longer live on our own. That we are incapable of taking proper care of ourselves.

The trouble is everyone is too busy and too caught up in their own daily lives to feel the pain, the anguish, the fears and tears of a person with this disease. “There but by the Grace of God go I.” Please take a moment to just think about it, as this world they now exist in is very confusing,
dark, lonely, and at times almost completely void of reality as we know it. To a person with this disease the world can be a pretty frightening place. A clouded, distorted view of life free of warmth, free of past comforts, and even at times free of love because of lack of understanding.

What have we brought into this world? Nothing! What can we take out of this world when we leave it? Nothing! Just once try to put yourselves in their place. Try once to experience first hand the frustration, the emptiness, and the heartache that fills their day each and every day.

When was the last time you had to have someone feed you, or the last time you had to have someone dress you, or bathe you, or comb your hair, or for that matter, brush your teeth? This is merely the beginning as the real heartbreaker is when they can no longer walk or talk, or even swallow their food. Sound horrifying? It is! Once again, “There but by the Grace of God go I.”

Please try and think long and hard. Please try thinking with your hearts and not your schedules. Please try to take out one hour a week, one hour every two weeks, or possibly just one hour a month. Go and visit a facility where residents with Alzheimer’s Disease reside. There is no cost….it’s free. The only thing it may possibly cost you is a smile, a hug, or a reassuring pat on the shoulder. Perhaps just a listening ear, or a tender loving and caring heart. The rewards reaped will be monumental.

Remember 911? Who could ever forget? But, as the days passed, people seemed to do exactly that. We all returned to our old lives, our old ways of living and our busy schedules. Please don’t let this happen here. The time is here and now. Please give of yourselves, your understanding, your love, your time, and put a smile back upon one face, put back a song within one heart and maybe even wipe away one tear or two from a pair of tired eyes. You will be so very much the richer. But most of all, you will fill someone else’s life with warmth and make a difference in someone’s life that otherwise was quite cold and empty.

Diane L. Christopher

Life Lessons from the Dementia Care Conference

I recently attended the annual Dementia Care Conference in Chicago. I was there to promote my novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease for my next book. Two of the six I’d already become good friends with over the past year. I knew the others more recently and less intimately. But I knew all of them only virtually, through emails and phone calls, and I couldn’t wait to know these friends of mine in three dimensions and in real time.

Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.

But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.

I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.

They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.

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

Where Are the Spoons?

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, author of STILL ALICE, www.StillAlice.com

Enrich Your Life

A friend of mine once posed this question to a group of people with early-onset dementia:

“What do you do to enrich your life?”

What a brilliant question! We should all poke heads up from our jobs, responsibilities, and schedules, take a look around and ask ourselves this question. It’s a brilliant question for any human being but is especially challenging and critical for those with Alzheimer’s, when what has always been life-enriching is leaving.

Following the thread of the story in a novel or movie may become too difficult, lack of coordination or memory for sequential steps may render previously beloved hobbies like woodworking, gardening, playing chess, or knitting impossibly frustrating, an intolerance for too much noise may prevent dining at a favorite restaurant, and travel may become too confusing and tiring to make it worth packing for that tropical vacation.

If the ground you’re standing on has cracked, shifted, or eroded too much to enjoy those things that have always enriched your life prior to Alzheimer’s, it’s time to assess the landscape you’re standing on now. This is also true for caregivers, whose days can become consumed with running the household alone and nights with exhaustion and isolation.

For both those with dementia and those caring for them, what you lose can be staggering and more than mildly depressing. Finding new hobbies and passions, new ways to relax and connect with friends and loved ones requires courage, determination, and creativity. I invite you to share the adaptations and strategies you’ve found with others who have begun to look. However you are affected by dementia,

What do you do to enrich your life?

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

Hope in Your MRI

Over the past couple of years in my conversations with people with dementia, I’ve come across a lot of confusion over MRI’s and the diagnosis of Alzheimer’s. Many were surprised to learn that their brain MRI’s were perfectly normal AND they had Alzheimer's Disease. One woman was told by her physician that because her MRI was normal, she couldn’t possibly have dementia.

The truth is, especially if you’re in the early stages of Alzheimer’s, there will likely be no cellular loss visible on your MRI. You can be forgetting how to drive home a mile from your house and the MRI image of your brain can look completely normal. How can this be?

It used to be the standard thought that amyloid plaques and/or neurofibrillary tangles got deposited in the brain, and these deposits “gunked” up the neurons and caused them to die. And this neuronal death caused Alzheimer’s.

Here’s the new thinking.

The cognitive deficits–the symptoms of dementia–occur BEFORE the plaques form, before the neurons die. In the brain of someone with Alzheimer’s, there is too much of a soluble protein called Amyloid Beta 42. Either too much is made or not enough is cleared away. When too much is present in the synapse, these individual little peptides stick together and form small oligomers. These oligomers of Amyloid Beta 42 lodge in the synapses and interfere with synaptic transmission—the ability of neuron #1 to give it’s electrochemical information to neuron #2. Through a complex molecular cascade, these oligomers are specifically impairing neurotransmission through NMDA receptors, a very important kind of transmission necessary for something called Long Term Potentiation.

So these oligomers of Amyloid Beta 42 lodge in synapses and prevent good neurotransmission from neuron #1 to neuron #2. And behaviorally, new information isn’t learned. Or old information can’t be accessed. Synaptic plasticity suffers. Over time, because these synapses aren’t working properly and because of inflammation and other problems, those nerve axon terminals will retract. Eventually, unable to function, the neurons will die, leaving behind empty space (the atrophy seen on an MRI) and possibly heaps of Amyloid Beta 42 in amyloid plaques.

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

The cure for dementia then, the kind of treatments that will be disease-altering, will
1. Impede production of Amyloid Beta 42, or will
2. Increase clearance of already-produced Amyloid Beta 42, or will
3. Prevent Amyloid Beta 42 from sticking to itself so it can’t form oligomers, or it will
4. Rip these already-formed oligomers apart.

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

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

Away From Her

Last night, I saw the movie AWAY FROM HER starring Julie Christie (Fiona) and Gordon Pinsent (Grant). Fiona, a bright and active woman, develops Alzheimer’s disease, and the story explores what happens to her relationship with her husband and what remains of the love in their 44-year marriage as her shared memories of their life together disappear. The movie is respectful to many of the realities of living with Alzheimer’s and doesn’t commit Fiona instantly to vacant oblivion. Christie delivers a powerfully authentic performance, revealing layers of awareness colored by confusion, embarrassment, panic, humor, and resilience through an ever-thickening fog of dementia. And Pinset’s portrayal of her husband’s denial and then heartbroken devotion are believable and moving as well.

I fully recommend the film, but I do think it simplified a lot. For example, although we see what Alzheimer’s does to Fiona and Grant, their story contains no children, no siblings, no friends or colleagues, no grandchildren. In my family and in others I know, the impact and loss from Alzheimer’s are felt not just by the person with dementia and his or her caregiver. It ripples through the family, through friends of family, through the community they live in. And it affects everyone differently.

What did you think of the movie?
How has Alzheimer’s affected you?

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

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 by 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 PhD 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 85 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 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