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March 22, 2009

Still Alice


Still Alice by Lisa Genova
Fiction
2009 Pocket Books
Finished on 3/16/09
Rating: 5/5 (Outstanding!)





Product Description:

An extraordinary debut novel about an accomplished woman who slowly loses her thoughts and memories to a harrowing disease—only to discover that each day brings a new way of living and loving.

Alice Howland is proud of the life she worked so hard to build. At fifty years old, she's a cognitive psychology professor at Harvard and a world-renowned expert in linguistics with a successful husband and three grown children. When she becomes increasingly disoriented and forgetful, a tragic diagnosis changes her life—and her relationship with her family and the world—forever.

At once beautiful and terrifying, Still Alice is a moving and vivid depiction of life with early-onset Alzheimer's disease that is as compelling as A Beautiful Mind and as unforgettable as Ordinary People.

I come from a long line of incredibly good genes. My maternal grandmother was 88 years old when she died, and up until her last few months, she was one of the most active and vivacious people I've ever known. She walked every day, entertained friends and family, was an avid gardener, a voracious reader, and even went white-water rafting with my godmother (they were both in their eighties!). Her mother was just as spry, living a long and healthy life of 96 years. My mother (who turns 76 in May) is following in their footsteps. She has inherited their joie de vivre, cooking and entertaining visitors and neighbors, volunteering at her local library (she's also a voracious reader), and traveling hither and yon with my stepfather. I hope to be at least half as active when I'm in my 70's!

The paternal side of my family could have been cut from the same cloth. My grandfather led a busy and active life (also one to walk every day) until succumbing to prostate cancer at the age of 92. My father turned 76 in January, and up until a year ago February, he and my stepmother had lived aboard their 1957 Richardson motor yacht for 15 years! As some of you may know, living aboard a boat is both physically and mentally demanding, but my father is more than up to the task.

My husband likes to joke about marrying a woman of "good stock." And yet, he's right. Lucky or blessed, I'm very fortunate to have been born into a family of such good genes and longevity. None of my grandparents or parents have any history of Alzheimer's. So I shouldn't worry, right? After reading Lisa Genova's incredibly powerful novel, I can't help it. I'm terrified! Still Alice puts a frightening face on this fatal disease. As Alice claims:

She wished she had cancer instead. She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she'd have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.

Alzheimer's disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in to the face of a blazing fire. John continued to probe into the drugs in clinical development, but she doubted that any of them were ready and capable of making a significant difference for her, else he would already have been on the phone with Dr. Davis, insisting on a way to get her on them. Right now, everyone with Alzheimer's faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or a full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.

And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be outcast. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn't want to become someone people avoided and feared.

Alice is a professor of psychology at Harvard University. Her expertise lies in psycholinguistics. She is one of the ten percent of those afflicted with Alzheimer's who are under the age of sixty-five. Alice is fifty years old and she has early-onset Alzheimer's.

On the annoying frustration of early symptoms:

"Come on," she urged, wishing she could attach a couple of jumper cables to her head and give herself a good, strong zap.

She didn't have time for Alzheimer's today. She had emails to return, a grant proposal to write, a class to teach, and a seminar to attend. And at the end of the day, a run. Maybe a run would give her some clarity.

and

Cued by the hanging rise in her inflection and the silence that followed, Alice knew it was her turn to speak but was still catching up to all that Lydia had just said. Without the aid of the visual cues of the person she talked to, conversations on the phone often baffled her. Words sometimes ran together, abrupt changes in topic were difficult for her to anticipate and follow, and her comprehension suffered. Although writing presented its own set of problems, she could keep them hidden from discovery because she wasn't restricted to real-time responding.

On the future:

Although Alzheimer's tended to progress more quickly in the early-onset versus late-onset form, people with early-onset usually lived with the disease for many years longer, this disease of the mind residing in relatively young and healthy bodies. She could stick around all the way to the brutal end. She'd be unable to feed herself, unable to talk, unable to recognize John and her children. She'd be curled up in the fetal position, and because she'd forget how to swallow, she'd develop pneumonia. And John, Anna, Tom, and Lydia would agree not to treat it with a simple course of antibiotics, riddled with guilt over feeling grateful that something had finally come along that would kill her body.

We all forget names. We find ourselves at a loss for a particular word. We recognize an acquaintance and yet can't for the life of us remember his name (or, for that matter, how we know him). And yet, we don't get lost in our own neighborhood. Or walk into a neighbor's kitchen, mistaking it for our own as we search the cupboards for coffee filters. Or forgot how to put on our underwear. Lisa Genova has written an incredible book that paints a vivid portrait of this progressively fatal disease. Still Alice is not an easy read, and yet I couldn't put it down. I read it in less than two days and I can't stop thinking about it. I've gone on to peruse the Alzheimer's Association's website and discovered the following information:

Today we know that Alzheimer’s:

Is a progressive and fatal brain disease. As many as 5 million Americans are living with Alzheimer’s disease. Alzheimer's destroys brain cells, causing problems with memory, thinking and behavior severe enough to affect work, lifelong hobbies or social life. Alzheimer’s gets worse over time, and it is fatal. Today it is the sixth-leading cause of death in the United States.Is the most common form of dementia, a general term for the loss of memory and other intellectual abilities serious enough to interfere with daily life. Vascular dementia, another common type of dementia, is caused by reduced blood flow to parts of the brain. In mixed dementia, Alzheimer’s and vascular dementia occur together.Has no current cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans living with Alzheimer’s. We’ve learned most of what we know about Alzheimer’s in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing.Early-stage is the early part of Alzheimer’s disease when problems with memory, thinking and concentration may begin to appear in a doctor’s interview or medical tests. Individuals in the early-stage typically need minimal assistance with simple daily routines. At the time of a diagnosis, an individual is not necessarily in the early stage of the disease; he or she may have progressed beyond the early stage.

The term younger-onset refers to Alzheimer's that occurs in a person under age 65. Younger-onset individuals may be employed or have children still living at home. Issues facing families include ensuring financial security, obtaining benefits and helping children cope with the disease. People who have younger-onset dementia may be in any stage of dementia – early, middle or late. Experts estimate that some 500,000 people in their 30s, 40s and 50s have Alzheimer's disease or a related dementia. • 10 million baby boomers will develop Alzheimer's in their lifetime.

• Every 71 seconds, someone develops Alzheimer’s.

At this time, there is no treatment to cure, delay or stop the progression of Alzheimer's disease. FDA-approved drugs temporarily slow worsening of symptoms for about 6 to 12 months, on average, for about half of the individuals who take them.

I can do everything right: eat nutritionally healthy meals, drink in moderation, exercise on a regular basis, stimulate my brain by reading and writing, stay socially active, and abstain from smoking -- and yet, I may still wake up one morning and brush my teeth with shaving cream. Or fill Annie's water bowl with orange juice. All in spite of those good genes I inherited.

I'm sure there are some who can't bring themselves to read this poignant story. It's heartbreakingly sad; oh, so real. And yet, I think it helps to serve those of us who may someday have to face the reality of a loved-one looking at us and asking our name. Or asking if we're married or have any children. And to smile back at that curious face and reply, "Yes, sweetie. I'm Lesley. I'm your wife and we have two daughters." I would want to understand the reason for that absent look in his eyes or why he doesn't know who I am or why he can no longer read his books. I don't want to get angry and frustrated. I would hope to be patient and loving. As I would hope he would be with me, if it were me not recognizing him.

Still Alice is more than just a story about a wife and mother. It's an important lesson in compassion and in understanding a fatally progressive disease. I can't recommend it highly enough. This is for anyone who has a grandparent, parent, sibling, spouse or child.

Thank you, Lisa, for your amazing debut novel. You have given the Alzheimer's community a gift of love and awareness.

Go here and here to listen to Lisa speak about her book.

Tune in to HBO's Alzheimer's Project, beginning on May 10th. This four-part documentary is helping to change the way America views Alzheimer's.

Click here for Lisa's website.

22 comments:

  1. Anonymous10:45 AM

    Lesley;

    Beautiful review. You said everything I couldn't put down in words. I was going to write a review but I was sooooooooooo enmeshed in this story that Alice became a close, dear friend and I had to grieve. I too read it in 2 days and grieved for many more....it was cathartic in ways and it gave me such empathy for the patient as well as the caregivers. I love that it was from a patient's point of view.

    "Ordinary People" by Judith Guest is one of my very favorite books. I sobbed through that book too as so much of it was relatable to me. Though Alzheimer's doesn't run in my family, I felt every emotion that this family and our dear Alice endured which to me is the superiority of the writer, Genova.

    A MUST READ. This is simply brilliance at it's finest.

    Gayla Collins

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  2. You've written an amazing review, Les. I'm speechless. I haven't read this book yet (I do have it here), but I intend to. From what I have read, the information is entirely accurate. It is a wretched disease. I'm interested in the quote that you shared about wishing she had cancer instead because there would be some way to fight it or at least something that could be tried. I understand that comment so well, at least from the aspect of a family member. I want to read this book to get some insights into the mind of the victim herself. Dad would never talk about his disease or indeed even admit that he had it. We handled things as best we could not knowing too much about it until late in the game. I did wish I could have a clue what his thoughts were like. Sigh.

    My best piece of advice to any person or family that faces this awful tragedy is to do just that. Face it. Prepare immediately for the time when you can't make decisions or they can't make decisions. Get your legal items in line for when tough choices must be made (and that time will come, trust me). And....just take it a day at a time. Enjoy the moment. Live in the moment. Treasure the moment. If it is your family member, tell them every single time you see them and leave them that you love them. Every single time. Hug them and just focus on the moment.

    Again, thanks for an amazing review. Much love to you.

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  3. Amazing, it was! :) On occasion, I still think about Alice - she became so real to me. I have gossiped to all my friends about her. *grin* Now, they are all getting to know her, too. So, glad you loved it, Les. I knew you'd like it, but not sure to what degree.

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  4. Lesley,
    What a wonderful review of such an important book. I read it about a month ago and it really kicked me emotionally. Here is the link to my review

    http://lifeinthethumb.blogspot.com/2009/03/still-alice-my-thoughts.html

    I'm going to add your review to my post. I really liked the extra information you added in regards to the HBO Alzheimer's Project.

    ~Staci

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  5. Les,
    I loved your review of Still Alice - and agree it should be read by a wide audience. I understand too that it may be difficult for some. I have the longevity genes as you do, but my aunt had Alzheimers, dying last year at age 96, and my mother,90 this year is in the beginning stages. So it is with a great deal of apprehension that I read this. But I learned more about the disease than any textbook could have taught me.

    Maudeen

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  6. Wonderful review, Lesley. I have a copy of this one sitting here on my desk waiting its turn. I admit I've been really hesitant to read it. My mother's mother suffered from dementia, my father's father suffered from Alzheimer's and my husband's uncle was just diagnosed with early onset Alzheimer's. I worry the book will just be too much for me to read. I'll probably try to read it just the same--I just won't be recommending it to my mother who I know wouldn't be able to handle it.

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  7. Anonymous5:27 AM

    Hi Lesley,

    Wow, thank YOU so much for reading Still Alice and for taking the time to write such a great review of it in your blog and to get in touch with me. I'm thrilled the book moved you!

    I write to you now from Washington, DC where I'll be giving the keynote speech tomorrow for the National Alzheimer's Association's Early Stage Summit for the Public Policy Forum. Reaching you (and you reaching others through word-of-mouth and your blog), reaching the people I'll talk to tomorrow---this is the true hope and opportunity for Still Alice, that it might not only entertain, but also educate, comfort, move, and inspire.

    Thank you also for all the great links you provided at your blog. I can't wait to see the HBO documentary---many of the people with Alzheimer's interviewed are people I've come to know quite well through the research I did for Still Alice.

    Thank you again for getting in touch and sharing such generous feedback! You made my night!

    All Best,

    Lisa

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  8. Wonderful review, Les! Alzheimer's is such a heartbreaking disease and this sounds like a truly moving story. I'm adding it to my wish list.

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  9. What a wonderful review Les. The excepts you post here are just devastating. A friend of ours, his mother suffers from this, and has for years. She is only in her 60s so relatively healthy. It's such a devastating disease. I can understand why Alice would have preferred cancer.

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  10. As a priest and pastor one who has worked with many who have Alzheimer's, it is a heartbreaking disease. I need to now read Still Alice.

    You mention Lisa Genova as giving the Alzheimer's community a gift of love and awareness. As many of those who commented on your review point out, you also, in this quite powerful review, have raised awareness and understanding!

    Yes, we do have "good stock." And like you, most grateful.

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  11. Awesome review. I thought the comparison between having cancer and Alzheimers to be an interesting one. She is right, with cancer at least there is something to fight - Alzheimers must seem like an endless loosing battle. I consider myself to be a survivor, something that is looked favorably upon in this society. But there are no survivors in Alzheimers. Just people who slowly deteriorate. So sad.

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  12. I first read about this book on Marcia's blog, and I definitely want to read it. Very well-written review.

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  13. Gayla - Thank you and thank you again for sending me this incredible book! I know it's one I'll read again and again.

    Kay - Thanks for the lovely comment. I thought a lot about you and your family as I read this book. I'll be interested to hear your thoughts if and when you read it. I wonder if I was able to read it, without hesitation, because I don't know anyone with Alzheimer's. I know several people who have said there's no way they could ever read it. That it would be too painful. But like you, I think I'd like to have an understanding of whatever thoughts my loved one was having.

    I'm just re-reading your beautiful comment and have to thank you for sharing something so personal with those who are reading my blog. I know what a heartbreaking time you and your family had. Thank you, Kay. Much love to you, too.

    Joy - Yes, it was. Alice really did become real, didn't she? Lisa did such a phenomenal job creating the character (and family) that I often times would forget it was a novel and not a memoir.

    Staci - Thanks for your lovely words. And the link to your review, which I'll come read shortly.

    Maudeen - Thank you! So good to see your name here! I'm so sorry to hear that you lost your aunt to this wretched disease. And that your mom is just beginning to show signs of it, as well. But I'm glad you were brave and read the book. I think the information gleaned from this remarkable story will help you and your mom. Hugs to you.

    Literary Feline - Thanks so much. I understand your hesitation to pick up the book. I honestly don't know what I'd do in your shoes. I'd like to think I'd want to get as much information as possible in order to understand and help my loved one. But I understand the fear of reading something so painfully close. Do let me know what you think, if you do read it. Take care.

    Lisa - Thanks so much for the lovely comment/email. (You made my night!) I don't know what else to say that I haven't already said in my review other than to thank you again for writing such a powerful story. Honestly, I can't stop thinking about Alice and her family. You made them so real.

    I wish you continued success with the book and can't wait to read your next release!

    Nat - Thank you!! It really is a heartbreaking disease and the author does such an incredible job of educating the reader without resorting to a maudlin or sappy narrative.

    Tara - Thanks for your nice comment. I'm so sorry about your friend's mother. So sad... Hopefully, there will be a cure someday soon!

    Dad - Thanks for this lovely comment. After reading Lisa's book, I felt so compelled to share as much about it as possible, in addition to some of the information from the Alzheimer's site. Let me know what you think when after you read it. And thanks for 50% of my good stock. ;)

    Stephanie - Thank you!! And I am so glad you're finished with your treatments and have joined the survivor's club. I think you deserve a tropical vacation, don't you? :)

    Nan - I need to go back and re-read Marcia's review now that I've finished the book. Thanks for the reminder. And the nice comment. I know I'll get a chance to read your thoughts about the book once you've read it.

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  14. Thank you for this terrific review. I am planning on reading this right away. I was taken aback when the first 'about' paragraph I read on a major book-seller site said it was written a bit clumsy but I'm now not worried about that. Thank you.

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  15. Great review. After watching my grandma lose herself to Alzheimer's, I don't think I could read this book. It's just too scary and sad to me.

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  16. My book club just voted this in to read and discuss in July. After reading your review I can't wait to start it, terrifying as it may be to someone approaching the age of the character in the book! Your review is amazing, thank you.

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  17. I just loved your review! Thank you so much for going beyond the premise of the book. I don't know anyone with Alzheimer's personally but I've heard from acquaintances what it is like to care for someone with the disease and it is heartbreaking. The statistics are frightening too aren't they? Anyway, I'm definitely putting this book on my list!

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  18. bkclubcare - Thanks for visiting and your very nice comment. I read a few reviews that claimed this book was a bit technical and clumsy, but I sure didn't feel that way. I loved all the medical/scientific details. Let me know how you like it once you get a chance to read it.

    Ali - Thanks for visiting. I'm glad you enjoyed the review, but I'm so sorry to hear that your grandmother was a victim of this horrible disease. I don't blame you for not wanting to read the book.

    LisaMM - I think this would be a fabulous book to discuss in a book club. Thanks for the very nice words about my review. I'll be anxious to read your thoughts once you've finished the book, Lisa.

    Iliana - Aww, you're so kind. I'm glad you enjoyed the review. It's always easier to write a review for a book I'm passionate about.

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  19. LOVED this book - am struggling to review it now.

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  20. bkclubcare - Another fan. I visited your blog and think you did a great job reviewing the book.

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  21. Oh, thank you! I forgot (and now corrected) to link to this. I am going to an author event tomorrow and the book club discussion is the next day, so I will likely have more followup postings to do. :)

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  22. bkclubcare - You're going to see Lisa Genova tomorrow?! I'm so jealous. Please tell her hello from me and that I am having great success selling her book at work. I'm hoping my book group will read it someday!

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