Ask Lisa Genova! discussion

SPOILER ALERT! I am starting Left Neglected tomorrow after finishing Just Alice last week. I found myself wondering as I read Just Alice about the accuracy of Alice's perceptions. How did you do your research and choose to portray Alice's symptoms the way you did? Also, how did you make the decision for Alice not to end up committing suicide? I'm glad that's the way the story went, but I can imagine thinking through something similar.

I work with people who have Alzheimer's with the additional complication of having a Developmental Disability. I felt "Just Alice" should be a must-read for people who work with people who have Alzheimer's. Is there anything you would change in "Just Alice" if you were writing it today?

Hi Christen,

My grandmother had Alzheimer's, and my experience watching her symptoms and the progression of her illness was the seed for STILL ALICE. While I was writing the book, I was online (email and chat) every day for over a year and a half with people who are living with Alzheimer's or a related dementia. My conversations with them were such an incredible gift--they opened themselves to me and showed me what it feels like to live with Alzheimer's. I listened and learned, and they helped inform the reality behind Alice's fictional journey. In terms of Alice's decision--the disease, and her forgetting, made the decision for her. This became where the story needed to go, and I'm glad it took Alice there.

Hi Karen,

Funny you should ask this question because I actually got to do this. STILL ALICE was originally self-published before Simon & Schuster bought it. In the self-published edition, the book ends with John in the coffee shop. Before I signed with my literary agent, she asked me to write a new ending. I wrote what is now the epilogue, and I love it. I'm so grateful she asked me to do this, and the book got this sort of second chance at having the right ending.

Lisa, a couple of us posted somewhere in these exchanges about our curiosity concerning Alzheimer's as a primary cause of death. I had always assumed that the primary cause was a physical ailment, such as heart attack, cancer, etc. My father-in-law, who suffered from this unforgiving disease, had pneumonia and cancer when he at last died. Can you enlighten me more about Alzheimer's as a cause of death? Thanks. Oh, and let me just mention that Still Alice left me breathless.

Kathy wrote: "Lisa, a couple of us posted somewhere in these exchanges about our curiosity concerning Alzheimer's as a primary cause of death. I had always assumed that the primary cause was a physical ailment,..."

Hi Kathy,

Thanks so much for your post, your kinds words, and your question. Today, because we still don't have a cure, Alzheimer's never has a happy ending. People with AD, especially elderly people with AD, often die of some other ailment (stroke, heart attack, cancer) before they reach the final stage of Alzheimer's. But if you have Alzheimer's and live to the final stages, here's what typically happens--in addition to all the other things you've forgotten, you will forget how to swallow food (if you have children, remember that they had to learn how to do this, to not stick their tongue out at the spoon). You'll accidentally aspirate some food into your lungs, you'll develop pneumonia, and this will be the cause of death.

Lisa,
Thank you for STILL ALICE. My Aunt had AD and my mother was her primary goto person. A friend recommended your book to me, which I read and then read again almost immediately. I recommended the book to my mother and when she came to visit she began to read it, however since she is in her eighties and has macular degeneration we began to sit down together and I read to her. This was a wonderful time of sharing and understanding, as well as support for my mother. Most of all for me, it helped confirm what I knew, that Aunt Kathryn was still Aunt Kathryn.

Lisa,
I am a physical therapist that has worked with many patients with Alzheimer's or head injuries in my career.
What stuck with me about Still Alice was how wonderfully you worked in all the current science and research about Alzheimer's. It was something I really appreciated. In Left Neglected I wished for more of this type of knowledge about left neglect.
What was your reasoning behind both of these choices?
Thank you so much,
Stacy

Hi Lisa,

I loved your book, Still Alice, and am just beginning Left Neglected; thank you for giving us both!

It has been my experience that people who begin to lose the sharpness of their memory often fear that they have AD. I know that a regular physician can ask a few questions and come to a determination as to whether or not further testing is needed, but such a casual diagnosis is not always trustworthy. What do you suggest when someone suspects their memory loss might be something more than "normal" aging? In Still Alice, word finding is one of her first experiences of a problem. Is the occasional word-finding problem itself something to look into? You must get questions like this all the time. Perhaps there is a test or a list of questions online that you typically recommend. (And yes, I'm asking for myself as well as others!)

Thank you so much for your time.

Lisa wrote: "Kathy wrote: "Lisa, a couple of us posted somewhere in these exchanges about our curiosity concerning Alzheimer's as a primary cause of death. I had always assumed that the primary cause was a phy..."

Thank you for your answer, Lisa. I do recall now hearing something about the failure to remember how to swallow. Such a sad disease.

I was moved by Alice's story and fascinated by the scientific information. Our mother 's symptoms back in the 70s were similar to Alice's, and we were told she had 'some sort of dementia'. She was in her late 50s. She died when she was 81 but it was a very difficult 25 years for our family trying to understand what was happening, and provide adequate care for her. Thank you Lisa for "Still Alice" which helped to shed some light on a difficult time.

Dear Lisa,

I'm so honored to be writing to the author of my favorite book "Still Alice". I have one question for you please, I'm a Molecular Biology student -that's why i found the scientific info. in Still alice very interesting and made the story very realistic-, I love reading novels but in the last year i've been thinking about "writing" novels, and actually Still Alice encouraged and inspired me to do so, because i found how Biology could help me choose such a unique kind of novels that targets a specific audience. So my question is, what do you advise me to do to get started, I've never written any novels, just essays and scentific papers!

Thank yo sou much for your time, and Congratulations on your success!

Salma wrote: "Dear Lisa,

I'm so honored to be writing to the author of my favorite book "Still Alice". I have one question for you please, I'm a Molecular Biology student -that's why i found the scientific inf..."

Hi Salma,

Read Writing Down the Bones by Natalie Goldberg, On Writing by Stephen King, The Artist's Way by Julia Cameron to get started. I also recommend taking some acting classes--improv and Meisner if you can find them--the principles I learned in acting applied beautifully to writing.

Best wishes to you!
Lisa

Hi Lisa! Your book Left Neglected is one of my favourite books so far. I was just wondering what you do when you have writers block,if such a thing occurs for you and I don't believe it does. :) You inspire me.

Hi Lisa!! I have loved both of your books for so many reasons. As a professional/researcher who works with head injuries/stroke victims/ alcoholics-- you provide so much insight and understanding of the patient. As I am now working in the geriatrics field I loved your descriptions coming from the Alzheimer’s patient and her family. The understanding and lack of understanding they had. The thing I love most about both of your books is the HOPE that is inspired. The eventual acceptance of the family and community; which is a huge issue!! Plus in both books you give reader’s resources!
Thank you so much!!
In my current graduate studies I have come to the understanding that Early Onset Alzheimer’s has a much shorter lifespan than other dementias and regular onset Alzheimer’s. Could you explain a little bit more about that??