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

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.

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