Posted 10 April 2008

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Foreword to Living Alzheimer's by Lisa Genova, Ph.D.

Read Interview with Lisa Genova

Alzheimer's Disease.

Now close your eyes. What image do those two words evoke? What do you think of? Whom 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. I see her 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?

Alzheimer's is not a disease reserved exclusively for the elderly. Early-onset Alzheimer's is Alzheimer's before the age of sixty-five, and there are currently an estimated 500,000 people in the U.S. who fall into this category. And, in 2008, this estimate is in all likelihood remarkably low, as early diagnosis continues to be a challenge. General practice physicians are often reluctant to diagnose someone so young with an incurable, fatal illness. They instead point their fingers at other more common and manageable culprits. Doctors, patients, and families pass off symptoms, often for years, to too much stress, not enough sleep, depression, or menopause. And most people believe that forgetting is a normal part of normal aging. We don't look to diagnose and treat something that's considered normal.

But what happens in the case of the forty-five-year-old executive parent who starts forgetting how to get home from work, to go to meetings, and how to operate the coffee maker? It's easy to imagine that these types of symptoms—highly noticeable, out-of-character, and disruptive in the life of someone so young—can only be ignored or mistreated for so long, and despite the various hurdles to a diagnosis of early-onset Alzheimer's, it is ultimately found.

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-five-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 caregiver and healthcare professional. 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 it feel like to have Alzheimer's?

This book is an attempt to see what we can further learn about Alzheimer's from the people who inhabit it, from those who are still early enough in the disease to communicate the feel and impact of what is happening to them. The people I interviewed for this book have all been diagnosed with Alzheimer's, they are all in the beginning stages of the disease, and they are all young—in their forties, fifties, and sixties.

I asked each person questions aimed at understanding what it's like to live with this disease. I asked questions about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, and 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. I asked questions about loss of status and friendships. I sat ready to absorb stories of the anger, frustration, and fear I imagined could be palpable every minute of every day.

We indeed talked about those obvious things, but no one would dwell there. Their losses comprised only part of the picture, part of what the beginning is. What each person wanted me to know, what I couldn't have predicted and what I couldn't steer them away from, were 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. Alzheimer's 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.

In these individuals living in the beginning stages of Alzheimer's, I saw a mental calmness and clarity, not denial or despair. These people 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. With pasts that are increasingly difficult to remember and futures that no one is in a hurry to get to, these people are all choosing to live now, in the moment. I felt calm, happy, and inspired talking with them. It certainly was an extraordinary experience, to witness such positive thinking and peace of mind in minds that are quite literally deteriorating.

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 these individuals. For now, these individuals with Alzheimer's are able to adjust and 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.

In the following pages, I offer you conversations with ten people who reveal to us what it means to live in the beginning stages of Alzheimer's disease. And in doing so, they also reveal to us what it means to live.

Lisa Genova, Ph.D.
www.StillAlice.com
VOICE OPEN MOVE
http://actionalz.org/blog