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Monday, February 4, 2008

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

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4 Comments:

At February 5, 2008 at 12:29 PM , Blogger James said...

Read Richard Taylor's Alzheimer's From the Inside Out. He is a psychologist who has the disease and is writing from the view of the patient. First book of its kind.

JIM

 
At February 5, 2008 at 2:25 PM , Anonymous Lisa Genova said...

Thanks, Jim. I've read Richard's book. It's a phenomenal read, and I recommend it as well. And it's funny to see your comment right now, as I was just listening to Richard's voice before I clicked over to check for comments!

You can hear Richard at:

http://www2.healthtalk.com/go/alzheimers-dementia

Sign up for the podcast. Richard's interview is there among others that are also worth hearing.

Lisa

 
At February 5, 2008 at 8:40 PM , Anonymous Anonymous said...

Really looking forward to this second book by you- A new perspective with the same great writing.

 
At February 17, 2008 at 8:50 PM , Blogger GinnyP48 said...

My mom has been in Special Care 2 years now. She was only 74 when we moved her there. It was Not an easy thing to do, but I can see how content she is & I am happy.

I've been reading & researching everything I can get my hands on. My mom's dad had Alzheimer's-it came through Parkinson's. Mom had several mini-strokes, then later developed Alzheimers. I worry that I'm next.

I Thank from the bottom of my heart, each of you who write books, articles, etc. to help the rest of us learn what to do, what Not to say (to people who don't understand "how you can put her in a place like THAT"), how to help family & friends deal with her disease. Fortunately, it's gone slowly, so most have adjusted.

I am the only child living of 2. My brother passed in 1963, & my precious dad passed in 1998. I hate to say this, but I Know ya'll understand. I am SO Grateful he's not here to see this - it would kill him. (Smile) He used to get SO upset if mom even had a tummy ache. He was so afraid of losing her & having to go on.

I'm learning a lot-like how to talk to, handle & still love those people who are afraid to call mom or go see her. They don't know what to say, or I guess, what to expect. I've tried to tell them. My aunt,(mom's older sis) was one of them. Now she looks forward to going to see mom, I'm glad to say!

I need help trying to make my family & friends understand that mom still knows them (maybe not by name, but by their sweet faces at least), & would love to see them or have a phone call from them. Her last Bday, I emailed the entire family & friends - told them when she would be home & to please call or come by. One person called - her sister. No one else called. It didn't bother her, but it about killed me.

One thing I keep forgetting is ME. I have to keep myself healthy & together so I can go see mom & not leave feeling guilty. How do you do that?

I used to cry every time I went to see mom, but that's slowed down because of the amazing staff in the Special Care Unit where mom is. They know - they Care & they show it.

Thank you for listening to me - I Really appreciate it! Comments & ideas are requested from my heart.

 

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Location: Chicago, Illinois, United States

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.


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