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

It's All In How You Hold It

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I ask him, “What did it feel like to hear those three words---You Have Alzheimer’s?”

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, that’s impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Talking with James

A couple of years ago, I sat down and talked with my friend James about his life before Alzheimer's.

James used to be the Director of IT for a Fortune 500 company. At any given time, he was responsible for twenty-five to thirty projects on a global basis, he received over a hundred emails daily that required responses, he attended six to ten meetings each day, and he worked anywhere from sixty-five to one-hundred hours each week. He likened his job to the corporate version of an air traffic controller. A self-proclaimed adrenaline junkie, he thrived in this kind of intense environment and was consistently ranked in the top ten percent of their 70,000-person workforce.

He rattled off descriptions of his work life with effortless enthusiasm. He told me that it was a really exciting time in his life, that his work was great and fabulous and that he loved it. I was undoubtedly convinced.

And then his Alzheimer’s symptoms began to surface. James’ first and most salient symptom was exactly what we all think of when we think of Alzheimer’s Disease –forgetting. But James was only 43 years old at the time. Forgetting doesn’t wave its arms and scream Alzheimer’s at the age of 43. Both James and his primary care doctor blamed his high-pressured job. He needed to slow down. Relax. His doctor thought he might be depressed. James didn’t think so. He had a lot of energy, and aside from forgetting things, he felt like himself. But he trusted his doctor and went on Wellbutrin.

The forgetting continued.

What kinds of things was James forgetting? He forgot to go to meetings, that there ever was a meeting, that it was he who’d actually called the meeting, people’s names, people he’d known for years, where he’d placed needed documents.

What did this forgetting feel like?

“I think of my mind as a desk, and all the papers on it are my memories, all the things I’m keeping track of. It’s as if someone sneaks up when I’m not looking and takes random pieces of paper off my desk. When I turn back around and look, it’s as if those pieces of paper never existed. I won’t even realize they’re gone until whatever they’re needed for comes up. Then I’ll have no idea where they are. They’re gone. That’s what was happening with my memories. I wouldn’t realize my memories were gone, and I would maybe even argue that they weren’t gone until they were needed, and then I wouldn’t have anything to draw on.

I also lost my ability to multitask. When you multitask, you keep information in place holders in your mind. You’re using your short-term memory. I think of it like an air traffic controller, keeping track of where all the planes are all the time. Even when you’re focusing on one particular plane, you have to keep the other planes in mind. Part of what made me successful as a director was my ability to work on twenty-five to thirty projects at once. I was losing sight of meetings, documents, conversations, the existence of entire projects.”

His planes were starting to collide, wander off the radar screen, and hit the ground.

“I also lost my sense of time. Two hours would feel like twenty minutes.”

This is also a symptom of forgetting. The way we perceive the passage of time requires the ability to string together memories of what happened between a time ‘then’ and another time ‘now.’ If memories are missing, stolen off the mental desk, this tends to shrink that time period.

With all this forgetting at a job that required a high level of remembering, James was beginning to fail at work. I wondered if maybe home life, where he didn’t have the same kinds of multitasking demands placed on him, was more forgiving.

What was happening at home?

“I would get home and be just exhausted. I’d hardly be able to speak because I was so tired. I think it was because my mind was working so hard to get through the day at work, that by the time I got home, my mind literally had nothing left. I would sit there and be blank for a while. It had to be frustrating for my wife, to see me spending all my energy and passion at work and having nothing left at home. That was really difficult on my family, wondering why Dad’s disengaged, why Dad doesn’t want to do anything. To them, it probably looked like depression. But it turns out it was something else.”

After an arduous journey through a series of medical tests that excluded every other possible known cause of forgetting, James was ultimately diagnosed with “the only rock left on the table.” Alzheimer’s Disease. James was forty-five years old.


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 Rich Hopes For

In the picture I’d seen of Rich on the internet prior to meeting him, he has short brown hair and a full beard covering his face. He’s wearing a white T-shirt under a denim blue, button-down shirt. He is not smiling. He looks menacing. It occurs to me that the photograph could pass for a police mug shot!

In person, he appears nothing like this unflattering picture of him on the internet. Rich is blond and smiles with blue eyes that are kind and sparkle. His face is clean-shaven, smooth and pink, the kind of gentle face my grandmother would’ve unabashedly approached and patted on both cheeks while saying, “Aren’t you handsome?” He looks at least a decade younger than his online picture and even younger than he is. Rich is fifty years old.

I learn that Rich has a masters degree in journalism and was the managing editor at a major newspaper for four years when his first symptoms began. It had been his job to assign stories to writers and photographers and edit stories. He made sure everything came together. He was highly competent and loved his job. He loved the written word.

Suddenly and inexplicably, Rich became tired, the kind of abnormal tired that sleep could not restore.

“My job typically needed me twelve hours a day, six to seven days a week. I’d go to work and last at my desk for ten minutes.”

He was diagnosed with Chronic Fatigue Syndrome. He could no longer work. Everything stopped.

“I know fatigue is a part of Alzheimer’s disease, and I know this disease is very strange and shows up differently for different people. But I still don’t know if the fatigue was due to Alzheimer’s or something else.”

His next symptom didn’t fall under the classic heading of ‘forgetting’ either.

“I started experiencing auditory hallucinations. These are very disturbing. I’d be in another room, and I’d hear the TV on, but I wouldn’t remember turning the TV on. I’d go in the other room, and the TV wasn’t on. I’d think, ‘Why am I hearing the TV?’ So I’d turn the TV on. Now I’d hear the actual TV AND the TV that I was hearing in my head.

Or I’d be listening to the stereo to a CD that I’ve been listening to for thirty years, and I know well what it sounds like. Then this harpsichord music would begin playing over it. And I’d think, ‘Well that shouldn’t be there, that doesn’t have anything to do with this!’ So I’d turn it off, so the CD music wasn’t playing anymore, but the harpsichord music was still there.”

About half of people with Alzheimer’s disease experience auditory and visual hallucinations. But Rich didn’t know this at the time.

“Then I was getting lost. I’ve pretty much lived in Los Angeles for most of my life and, I’ve been driving since I was sixteen years old. I was going to places that I’ve been to a thousand times, and I was just completely getting lost and not knowing how to get back. And again, I know this city like the back of my hand. I know it’s a complicated city, it’s not like living in a small town, but you drive Los Angeles. I went to school at USC. I know this city. And I was getting off the freeway and not knowing where I was. I was getting freaked out. My doctor just kept poo-pooing it and dismissing me. He really just didn’t listen to me.”

His doctor told him he was too old to have schizophrenia. He told him he clearly wasn’t depressed. Rich knew what he didn’t have. But he didn’t have any answers either.

So how did you get to a diagnosis of Alzheimer’s?

“My insurance changed, and I saw a new doctor and told him what had been going on. He said, ‘I don’t like the way this sounds’ and sent me for an MRI, a PET scan, and neuropsychological testing.

So I went and had the MRI and the PET and didn’t know the results. Then I went for the neuropsych testing which was eight hours a day for two days, and it actually spilled over, so it was probably a little more. It was exhausting. This may sound funny, but while I was taking the test, I was blowing it, but I didn’t know it. And she (the woman who administered the test) didn’t give it away. She just kept saying, ‘Good! Great!’ Encouraged by this, I would continue reading passages and answering questions. I thought I was acing the test! I wasn’t aware of this at the time, but she had me read at the twelfth grade level, and I got all the answers wrong. And she just kept moving down—eleventh grade, tenth grade, nineth, eighth, seventh. She stopped when I could finally answer some of the questions right, somewhere at grade school level. I was completely unaware that I wasn’t getting them all right.

At the end of the last day of testing, she had her report and my doctor had the scan results, and we all had the conversation. The MRI was clean, but the PET scan showed atrophy and hypoperfusion in the frontal, temporal, and parietal lobes. And all the mistakes I’d made in the neuropsych tests made sense in terms of where the deficits were on my PET scan. The doctor told me I had Alzheimer’s disease.”

What did hearing those two words do to you?

“I was really devastated. This was never on my radar at all. I was thinking brain tumor. Not that I wanted one, of course, but that’s what I was thinking.”

How did your life change after diagnosis?

“Emotionally, I went to a very dark place. I don’t talk about this too much, but I really did consider suicide. My mind went to where most people’s minds go when they think of Alzheimer’s. I kept thinking of lying in a bed somewhere, and I didn’t want to. So I thought, ‘Why not just cut to the end now?’ For about two months, I was in really bad despair. Then I talked with Michelle (the Director of Programs at the Los Angeles Chapter of the Alzheimer’s Assocation). She spent a couple of hours with me and listened to me and referred me to an early stage support group. That was really the turning point for me, having a place to connect with other people. That very first support group, I met Jay, and we went to lunch. We just have this connection, that kind of bond with someone where you’re able to talk openly about what you’re going through.”

Through his support group in Los Angeles, through online support groups, and through the Early Stage Advisory Panel for the National Alzheimer’s Association, Rich has forged many new and intimate relationships with others who have young onset Alzheimer’s. Finding others navigating similar waters gave Rich what he needed—real life examples of people living with Alzheimer’s. Not lying in a bed somewhere.

How did your existing relationships change after diagnosis?

“The person who has known me the longest has had a really hard time with this. She kept saying, ‘You don’t have this. Don’t say it. They’re wrong.’ Whatever process I had to go through to accept my diagnosis, get beyond my own denial, and deal with it, it was painful. But I went through it, and I accept my diagnosis. I want to tell people like her, ‘Don’t make me try to convince you for fifteen minutes that I have Alzheimer’s!’ But I have to go through that with people. With this one friend of mine, I had to keep going through this with her. She just wouldn’t believe me.

Then, I’ll tell her a story about me forgetting something that could never be mistaken for normal, and she’ll go to the other guardrail. Now she’ll say, “You can’t live at home alone anymore! You can’t be taking care of your mother! You need to sell your house!” Suddenly, I’m completely incompetent. And before that it was all, ‘There’s absolutely nothing wrong with you’ over and over. There’s no gray area. It’s just either or.”

I think this is a hard thing for people who aren’t familiar with Alzheimer’s Disease to understand, that it isn’t zero to end stage. When you were first diagnosed, your thoughts went straight to being in the fetal position in a bed somewhere, right?

"Right. I’ve learned differently."

Tell me what a good day is for you.

“A good day is going to my support group, meeting with friends, staying connected with people. I like reading the New York Times. It makes me feel connected to the world. But when I read the newspaper now, it takes me so long to read it. I’ll read an article and two minutes later have no comprehension of it. So I’ll have to read it again and again and again. It’s really frustrating, especially because of what I used to do for a living. I used to not only read stories but edit them and make them better. So it’s really disconcerting to me. Audiobooks are somewhat easier. I sometimes put things on my iPod and listen to them. I sometimes have better recall aurally. And if I like something, I’ll put it on again. And it’s almost as if I haven’t heard it before. That can be nice because it’s like experiencing something all brand new.”

What did you hope for your future before Alzheimer’s disease?

"My dream was to live in New York and work as a journalist for the New York Times."

What do you hope for now?

"A cure."

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

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

Aricept AND Namenda

Why take medication for Alzheimer's when they don't work?

I've heard this question too many times to count. My answer has always been anecdotal, second-hand:

But they do!

Finally, we have a scientific answer confirming what I've suspected and witnessed. Dr. Alireza Atri and his colleagues at Massachusetts General Hospital published the first long-term study of the real-world use of cholinesterase inhibitors, like Aricept, and Namenda in the July/September issue of Alzheimer Disease and Associated Disorders. They found that patients taking BOTH Aricept and Namenda declined less than patients taking only Aricept and even less than patients taking no medication.

Did these patients still decline? Yes.

Is this combination therapy a cure? No.

If you have Alzheimer's, is it worth getting on BOTH medications as soon as possible? According to the results of this study and what my friend Bill says, Yes.

Bill: My doctor referred me to a psychiatrist, and he immediately put me on Aricept and Nameda.

Me: How did he figure out you had Alzheimer’s?

Bill: He didn’t. He said to me, ‘I’m going to do one thing. You’ve been working on this thing for four months. Your doctor doesn’t know what it is. I have no idea what it is. But I’m going to put you on two medications. If in fact you have Alzheimer’s, and we confirm that a year from now, because it’ll take that long, you’ll have already been on the medication. If we don’t put you on the medication, you’ll have lost all of that cognitive ability, and you’ll never get it back.

It’s different today, with the medications we have. When my Dad had this, when they finally found out what was going on, it was, Make him as comfortable as you can. There were no ways of medically caring for these people then. If anything, they were sedated, to make them less…less…less…ahh”

Me: Agitated?

My stomach sinks as soon as I hear myself offer the word, and I hold my breath. Whenever I encounter someone with Alzheimer’s struggling to find a word, I have to work to keep myself from becoming an enthusiastic guesser in a game of Charades. My instinct is to jump in and make a stab at it. But if the word I suggest isn’t the right word, then my interruption might derail his train of thought entirely. Luckily, I picked the right one.

Bill: Yes, thanks, agitated. He said to me, ‘You’re just too young to give up on.’ So what this doctor did in good faith, putting me on these two medications, turned out to be a God send for us. And I don’t think that’s happenstance. I think things work for a purpose. It took me about eight months to get in to see the neurologist I needed to see. I took the neuropsych testing twice, for two days. That confirmed it.

Me: What went through your head when you were told you had Alzheimer’s Disease?

Bill: I was relieved. I’d been searching for so long. What started out as a four-month journey turned out to be an eighteen-month odyssey. I was relieved. I’ve never been angry, never been afraid. Now there are people who are angry, who are in denial, who are frustrated and feel a stigma associated with it. There are many people in my support group who are angry. Anger, in denial, frustrated, scared. I am none of those. I’ll be the first one out saying I’ve got Alzheimer’s. It is a disease I have. It is not who I am.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

To Drive or Not To Drive

Last week, someone innocently asked the DementiaUSA email group a not-so-innocent question. He asked if anyone knew how someone with dementia would go about getting a handicapped parking permit. As a person with dementia who still drives, he wants to use the handicapped spaces as a way of helping him remember where he parked his car.

Man, did he unwittingly stir the pot! The debate this question precipitated went on for days.

Here was one side:

If you can’t remember where you parked, it’s a sign that your symptoms are bad enough that you shouldn’t be driving anymore. You might not remember where you are or where you’re going and get dangerously lost. You might not remember how to operate the car or remember how much time you need to stop or to complete a turn in front of on-coming traffic and cause an accident. You might get hurt or hurt someone else, or worse, kill yourself or someone else. If you have Alzheimer’s and can’t remember where you parked your car, the solution isn’t ‘get a handicapped parking permit.’ It’s time to give up your license.

And here was the other side:

I would sometimes forget where I parked my car well before I had dementia. People without Alzheimer’s who leave a mall and can’t remember where they’d parked don’t hand over their keys. I drive slowly and cautiously and only in familiar places. I’ve never been in an accident. I only drive with my husband/wife, never alone, and he/she acts as my co-pilot.

As I was ‘lurking,’ reading without chiming in, I thought about my own recent experience losing my parked car.

Just the other day, I, a 37-year-old woman without dementia, stepped outside the grocery store, stared into the sea of mostly silver SUVs, and thought, “Now where the heck did I park?” I then spotted my car almost instantly but only because two giant kayaks, one bright orange and one bright blue, were perched high on its roof. Clearly and thankfully, forgetting where you parked isn’t criteria for giving up your driver’s license.

I was also reminded of an enlightening conversation I had almost exactly a year ago with my friend James who has young onset Alzheimer’s. Here is his perspective.

“I want to let my capabilities drive what I can do. I don’t want to hand over what I still have to this disease before it insists on taking it.

I didn’t want to give up my keys. Driving to me is one of the core things that allows you to maintain some engagement and freedom in the world, and when that’s gone, you’re dependent on the rest of the world to get you around.”

But driving with Alzheimer’s? Surely this combination is a tragedy waiting to happen, I’d thought. Alzheimer’s compromises the ability to multi-task. It causes spatial disorientation, impairs depth perception, and narrows field of vision. It’s easy to imagine the many things that could go wrong. And they do.

We see it in the news all too often. I remembered hearing about a woman from Wyoming who, at age fifty-eight and diagnosed with Alzheimer’s, got confused on her way to the airport to pick up her daughter and ended up over 650 miles from home. Police found her body about a mile from her car four days later.

The risks are real and potentially life threatening, for the driver and for others. At some point, James shouldn’t be behind the wheel. But how can James, with Alzheimer’s obscuring his ability to self-evaluate, recognize that point?

James didn’t guess, argue, or insist. He took an intensive driving exam. They tested his vision and his reaction time. They put him in video simulators. They even tested his memory. Then they put him behind the wheel. He drove on highways, side streets, through construction routes with detours, and parallel parked.

James passed the test with flying colors. He relies on this objective score to tell him whether he can continue to drive, not on the piece of paper that says he has Alzheimer’s. He has an agreement with his family that he’ll take the test every year. If the results show a decline, if he’s no longer a good candidate for driving, or if at any time anyone in his family becomes uncomfortable with his driving, he’ll give it up. And he won’t argue about it.

“But even then, I hope people will offer support. The answer isn’t ‘well now you should stay at home,’ but ‘now let’s consider some alternatives.’ Is there a bus service? What programs are available? Are there volunteers?”

So, for now, James drives with Alzheimer’s.

At the end of the heated online debate, the parties agreed to disagree. There was no consensus, no black and white, no right and wrong. Some remain drivers, others have become willing passengers.

And I remain grateful for the brightly colored kayaks on the roof of my car.

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com