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 “Author of STILL ALICE” to get to Lisa Genova.
If 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 loved the book, if it stays with you after you finish the last page, if you talk about the book with friends and at book club, if you travel this particular road over and over, or in other words, if you practice and rehearse this information, “Lisa Genova is the author of STILL ALICE,” 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 author of STILL ALICE,” 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 “Author of STILL ALICE” 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 author of STILL ALICE?” 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 LEFT NEGLECTED Street” and “Neuroscientist from Harvard Avenue.” Now you can have a roadblock on “Author of STILL ALICE Road” and still have two 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.
Say you learn ten things about me. You've built ten neural roads. And now let's say you have Alzheimer's. You can have nine roadblocks, a significant amount of memory loss. But you still have one road left. You can still remember my name.
Monday, August 1, 2011
Wednesday, June 1, 2011
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.
“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.
Wednesday, December 1, 2010
The Valley of the Baby Dolls
I recently read ‘DANCING WITH ROSE: Finding Life in the Land of Alzheimer’s’ by Lauren Kessler. In it, she reveals the inner life of an Alzheimer’s care facility. I liked so much about this book but want to share one part in particular for now.
Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’
“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”
She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.
My grandmother who had Alzheimer’s did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.
The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”
My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?
I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?
Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’
“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”
She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.
My grandmother who had Alzheimer’s did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.
The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”
My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?
I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?
Wednesday, November 24, 2010
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. He has Alzheimer's.
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.”
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. He has Alzheimer's.
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.”
Sunday, October 24, 2010
What's Your Motto?
Back when I was doing a lot of pre-publication interviews for STILL ALICE, 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.
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
“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.
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
Friday, September 24, 2010
Treatment Without Numbers
I know a widely-respected neurologist at a prestigious, teaching hospital who once said,
“Treating dementia is like rearranging the chairs on the deck of the Titanic.”
And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.
Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.
But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?
Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?
In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.
There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”
But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.
We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?
Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.
What do we know without knowing any numbers?
“Treating dementia is like rearranging the chairs on the deck of the Titanic.”
And he’s not alone in the medical community with this philosophy. I’ve heard many stories of doctors, both neurologists and general practice physicians, who are reluctant to prescribe treatment for Alzheimer’s Disease. They believe that the current drugs available don’t make a difference. They believe the current drugs are not cost effective.
Aricept and Namenda do not cure Alzheimer’s.
They do not stop the progression of the disease.
The cognitive capabilities of everyone who has Alzheimer’s Disease will get worse despite taking these medications.
No one gets out of Alzheimer’s alive.
But what about quality of life? What about the value of making each day a little less foggy, less frustrating, less isolated, less stressful for as long as possible? What about living as fully as possible with whatever time you have?
Do doctors not bother to prescribe calcium channel blockers or statins to elderly patients with heart disease because they’re likely going to die soon anyway? Are patients with cancer denied surgery, chemotherapy, or radiation if it’s known that these treatments will only buy time before the cancer ultimately kills them?
In the diagnosis and treatment of any patient, doctors have been trained to measure and quantify. Cholesterol levels are measured. There is a number. Blood pressure is taken. There’s another number. Patients are given medication, and doctors look to these numbers to evaluate whether the treatment is working. The number changed. The treatment worked.
There is no dementia protein that can be measured in the blood. There is often nothing visible in a brain scan. There is no number physicians can point to that can measure discrete changes in cognition. A doctor can’t put a patient with Alzheimer’s on Aricept or Namenda and then in six months say, “Things look great. We see a 25% decline in the accumulation of amyloid beta in your brain.” Or, “Wonderful. Your glutamatergic neurotransmission is up significantly.”
But just because there’s no numerical index of biological improvement that can currently be measured, it doesn’t mean the improvement isn’t there.
We’re all on the Titanic. We’re all going to die. For those of you with Alzheimer’s disease who are taking an Acetylcholinesterase Inhibitor (Aricept, Exelon, Reminyl) and/or Namenda, do you feel like you’re just pointlessly rearranging the deck chairs?
Tell us what you notice about your capabilities and mental health while on these medications. What value do these drugs have for you? Caregivers, tell us what you notice.
What do we know without knowing any numbers?
Tuesday, August 24, 2010
Life Lessons from the Dementia Care Conference
I attended the annual Dementia Care Conference in Chicago back in the summer of 2007. I was there to promote my then self-published novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease. Two of the six I’d already become good friends with over the past year. I knew the others more recently and less intimately. But I knew all of them only virtually, through emails and phone calls, and I couldn’t wait to know these friends of mine in three dimensions and in real time.
Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.
But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.
I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.
They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.
Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.
But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.
I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.
They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.
Thursday, June 24, 2010
Finding Your Kaleidoscopes
You’re at a party in the middle of telling a story about your favorite childhood toy, but you can’t for the life of you come up with its name.
“Oh, what’s it called?” you ask yourself as you rummage around in your brain.
This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.
“I know it begins with the letter K.”
Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.
“Kaleidoscope!”
The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”
Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.
If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.
So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.
“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:
“Kaleidoscope!”
“Oh, what’s it called?” you ask yourself as you rummage around in your brain.
This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.
“I know it begins with the letter K.”
Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.
“Kaleidoscope!”
The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”
Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.
If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.
So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.
“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:
“Kaleidoscope!”
Monday, May 24, 2010
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.
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.
Sunday, February 14, 2010
Happy Valentine's: A Love Story
John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.
Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.
As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”
She accepts the lovely rose and her favorite chocolates with polite pleasure.
He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.
She swats at him and screams.
“Mary, I’m your husband. I’m John, your husband.”
Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.
“Get out!” she yells and covers her face with her hands.
“I love you, Mary. I’m your husband, John. Look at me, I love you.”
He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.
Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”
After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.
John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.
To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!
John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship—
She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?
Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.
He has a box of chocolates. Her favorite. Would she like one?
And go from there.
Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.
As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”
She accepts the lovely rose and her favorite chocolates with polite pleasure.
He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.
She swats at him and screams.
“Mary, I’m your husband. I’m John, your husband.”
Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.
“Get out!” she yells and covers her face with her hands.
“I love you, Mary. I’m your husband, John. Look at me, I love you.”
He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.
Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”
After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.
John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.
To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!
John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship—
She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?
Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.
He has a box of chocolates. Her favorite. Would she like one?
And go from there.
Tuesday, May 5, 2009
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 asked 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 to 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, Jay, that’s so 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.”
I asked 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 to 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, Jay, that’s so 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.”
Thursday, April 23, 2009
IndieReader.com
As a formerly self-published author, I can't help but keep my eyes and ears open for great, new tools for the guerrilla marketing writer. Here's a new and exciting website being launched soon to help self-published authors gain better visibility.
www.IndieReader.com aims to give self-published/POD (aka Indie) books an interactive and buzz-worthy platform, a place where they're not treated like second-class citizens because they're self-published. Authors at IndieReader will get increased visibility (the site's founder has 20+ years in PR), a sales venue, and a website page with their own URL.
"Just as Sundance has done for Indie films, IndieReader.com's mission is to promote and legitimize independent books and authors," says founder Amy Holman Edelman.
The site is slated to go live on June 1st.
So, if you're a self-published author, get on Facebook and GoodReads, check out AuthorZoom.com, and see if IndieReader.com can help readers find your book.
Further info and a look at the Home and Author pages can be found at www.indiereader.com.
www.IndieReader.com aims to give self-published/POD (aka Indie) books an interactive and buzz-worthy platform, a place where they're not treated like second-class citizens because they're self-published. Authors at IndieReader will get increased visibility (the site's founder has 20+ years in PR), a sales venue, and a website page with their own URL.
"Just as Sundance has done for Indie films, IndieReader.com's mission is to promote and legitimize independent books and authors," says founder Amy Holman Edelman.
The site is slated to go live on June 1st.
So, if you're a self-published author, get on Facebook and GoodReads, check out AuthorZoom.com, and see if IndieReader.com can help readers find your book.
Further info and a look at the Home and Author pages can be found at www.indiereader.com.
Monday, March 2, 2009
Where I Write
I have a great office in my house. Brick floor, two deep and comfy chairs, a café table and chairs, and a desk with my iMac computer on it. Three of the four walls are windows, so it has lots of natural light, and the west window wall overlooks a saltwater creek that runs into Pleasant Bay. Two swans just swam by. A huge bulletin board hangs above my desk tacked with Still Alice clippings, pictures of my kids, and my intention board. My intention board has lots of great words on it that help me stay grounded and balanced by simple reminder: Grateful, Grow, Create, Live in the Moment, Books that Make a Difference, Believe, Open Minds.
Sounds lovely, right? Inspiring even. It is, but honestly, I prefer Starbucks. I find it difficult to write at home. There are bills to pay, laundry to do, phone calls to take and return, food in the fridge. Not to mention all the chocolate. So at home, there is always the possibility that when a scene I’m writing isn’t flying effortlessly from my head into the pen, I’ll think, Hmm. I really should pay those bills. I know if I find myself choosing bills over writing the next sentence, it’s time to get out of the house.
Plus, I have two kids (8 and 1). If I’m home, one of them always needs me for something, even if there’s a perfectly good adult other than me here to get the job done. I’m a sucker for games and songs and hugs and kisses.
So I go to Starbucks. There’s nothing else to do at Starbucks but drink caffeine, which I desperately need because the 1 yr old doesn’t sleep through the night, and write. You can’t even daydream there for long without looking like a nut. I wrote Still Alice almost entirely at Starbucks.
I love my home office and enjoy writing in here when I can. Like right now. But if I didn’t have it, I’d be fine at a table at the coffee shop down the street.
Just don’t tell my husband this. He’ll want to convert my beautiful office into something else, like a gym or a gameroom.
Sounds lovely, right? Inspiring even. It is, but honestly, I prefer Starbucks. I find it difficult to write at home. There are bills to pay, laundry to do, phone calls to take and return, food in the fridge. Not to mention all the chocolate. So at home, there is always the possibility that when a scene I’m writing isn’t flying effortlessly from my head into the pen, I’ll think, Hmm. I really should pay those bills. I know if I find myself choosing bills over writing the next sentence, it’s time to get out of the house.
Plus, I have two kids (8 and 1). If I’m home, one of them always needs me for something, even if there’s a perfectly good adult other than me here to get the job done. I’m a sucker for games and songs and hugs and kisses.
So I go to Starbucks. There’s nothing else to do at Starbucks but drink caffeine, which I desperately need because the 1 yr old doesn’t sleep through the night, and write. You can’t even daydream there for long without looking like a nut. I wrote Still Alice almost entirely at Starbucks.
I love my home office and enjoy writing in here when I can. Like right now. But if I didn’t have it, I’d be fine at a table at the coffee shop down the street.
Just don’t tell my husband this. He’ll want to convert my beautiful office into something else, like a gym or a gameroom.
Wednesday, January 28, 2009
Can You Offer Me Some Advice on Self-publishing?
Yes, I can. I should say first that this is not a math equation. One plus two doesn’t necessarily equal three. There are no guarantees here. You can do everything I did and not get a publishing deal. But I hope you do!
It’s important to know that a self-published book was not my goal. I self-published because I couldn’t make any headway on the conventional road to a book deal. My self-publishing goal was to demonstrate that Still Alice had an enthusiastic and sizeable audience. I wanted to give my book a chance to wave its arms in the air and yell at the top of its lungs, to create a buzz loud enough for the literary agents and publishing houses to hear. And at the end of my self-published day, I still wanted a book deal from a traditional publishing house.
So with that goal, in 2007, I paid iUniverse to publish my novel. I required no editing, no book cover design (thanks to my talented husband), and no marketing. They offer all of these services and more, but I had either already done these things or was willing to do them myself. I simply needed them to print the book.
iUniverse is a print-on-demand company, which means they only print books that are ordered by customers. There are no stockpiles in warehouses, which is why it doesn’t cost the author an arm and a leg. There are other self-publishing companies out there, but I didn’t use them, so I can’t speak with any insight as to their pros and cons.
Since STILL ALICE was not going to be carried in physical bookstores outside my local area, it was crucial to have it available for purchase online. iUniverse made Still Alice available for sale at a lot of websites, like Amazon and Barnes & Noble.
I should also say that iUniverse did a great job producing a professional-looking, quality book. One reader, while holding the book in his hand and learning that it was self-published, said, “But it looks like a real book!”
So now I had a “real” book. Now what? iUniverse allows you to purchase copies of your own book at a discount. The % off retail increases as you buy more. Always have one with you. You never know who you’re going to bump into!
Get a website. Network online. Write your own press release and post it for free at www.pr.com. Become viral.
If you can start to feel the vibration of a buzz and you have the money, you might want to consider hiring a book publicist to assist you in your efforts.
After being self-published for ten months, I found an agent who sold the book to Pocket Books. The Pocket Books edition of Still Alice came out on January 6, 2009. Barnes & Noble sold more in the first two days than I sold in ten months. And in its first week, it debuted at #5 on the New York Times Bestseller List.
Brunonia Barry did it with The Lace Reader. Julia Fox Garrison did it with Don’t Leave Me This Way. I did it with Still Alice. It can be done.
Say yes whenever possible. Be tenacious. This is likely to be a marathon, not a sprint. Be sincerely grateful to everyone who helps you on your journey, because it will take a village to raise a self-published book. And remember to enjoy it all!
I hope this helps, and I wish you good luck!
It’s important to know that a self-published book was not my goal. I self-published because I couldn’t make any headway on the conventional road to a book deal. My self-publishing goal was to demonstrate that Still Alice had an enthusiastic and sizeable audience. I wanted to give my book a chance to wave its arms in the air and yell at the top of its lungs, to create a buzz loud enough for the literary agents and publishing houses to hear. And at the end of my self-published day, I still wanted a book deal from a traditional publishing house.
So with that goal, in 2007, I paid iUniverse to publish my novel. I required no editing, no book cover design (thanks to my talented husband), and no marketing. They offer all of these services and more, but I had either already done these things or was willing to do them myself. I simply needed them to print the book.
iUniverse is a print-on-demand company, which means they only print books that are ordered by customers. There are no stockpiles in warehouses, which is why it doesn’t cost the author an arm and a leg. There are other self-publishing companies out there, but I didn’t use them, so I can’t speak with any insight as to their pros and cons.
Since STILL ALICE was not going to be carried in physical bookstores outside my local area, it was crucial to have it available for purchase online. iUniverse made Still Alice available for sale at a lot of websites, like Amazon and Barnes & Noble.
I should also say that iUniverse did a great job producing a professional-looking, quality book. One reader, while holding the book in his hand and learning that it was self-published, said, “But it looks like a real book!”
So now I had a “real” book. Now what? iUniverse allows you to purchase copies of your own book at a discount. The % off retail increases as you buy more. Always have one with you. You never know who you’re going to bump into!
Get a website. Network online. Write your own press release and post it for free at www.pr.com. Become viral.
If you can start to feel the vibration of a buzz and you have the money, you might want to consider hiring a book publicist to assist you in your efforts.
After being self-published for ten months, I found an agent who sold the book to Pocket Books. The Pocket Books edition of Still Alice came out on January 6, 2009. Barnes & Noble sold more in the first two days than I sold in ten months. And in its first week, it debuted at #5 on the New York Times Bestseller List.
Brunonia Barry did it with The Lace Reader. Julia Fox Garrison did it with Don’t Leave Me This Way. I did it with Still Alice. It can be done.
Say yes whenever possible. Be tenacious. This is likely to be a marathon, not a sprint. Be sincerely grateful to everyone who helps you on your journey, because it will take a village to raise a self-published book. And remember to enjoy it all!
I hope this helps, and I wish you good luck!
Tuesday, October 14, 2008
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 scientifically suspected and personally 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
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 scientifically suspected and personally 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
Tuesday, September 2, 2008
Remembering the Spoons
I've lived in Chatham for a year now. Recently, my husband and I looked around and marveled at all we've accomplished in one year. The walls are painted, the wild and overgrown yard is somewhat tamed, the rooms are invitingly furnished, and oh yeah, we had a baby. Thinking back to last summer, I remembered how unsettled and exhausted I felt. Everything had to find its home before I could feel at home. Thinking about this, I remembered my blog post from last year about the spoons and smiled. I've come a long way in a year. I feel at home in my home now. And I can always find the spoons...
Last year:
It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.
I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.
After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”
I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.
In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.
It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.
I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.
I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.
Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Last year:
It takes me three tries to find the silverware drawer. I hand my seven-year-old daughter a spoon. She finishes her cereal, brushes her teeth, and we’re ready to go.
I can’t remember where I put my shoes. When searching for them, I spot my daughter’s library books that I forgot to return. Again.
After I locate my shoes, I’m finally ready to leave the house but then realize that I don’t have my sunglasses. I walk in and out of every room, hunting, desperate, mad at myself. Unsuccessful, I resign myself to spending the rest of the bright, summer day squinting when my daughter announces, “Mom, they’re on your head.”
I don’t have Alzheimer’s. I’m thirty-six years old, pregnant, and just moved into a new house in a new town. I’m tired from the move and the pregnancy and keeping up with the ceaseless needs of my life and family. And everything here is still unfamiliar.
In the old house, the silverware was kept in the drawer next to the refrigerator. Here, it is to the right of the sink. In the old house, we kicked off our shoes by the front door. Now, the front hallway is littered with towers of boxes, so our shoes end up somewhere else. My routine has been disrupted, and the mental map of where I live is under construction.
It’s no wonder I’m forgetting things. What a relief it is to know that this is normal and temporary, that once we’re moved in, once we get used to life here, once I have the baby (okay, when the baby turns four), then I’ll grab a spoon every time I reach for one and without even consciously thinking about it.
I can’t imagine what it must be like to have Alzheimer’s Disease---to experience these types of maddening lapses in cognition AND to know they will only keep happening and get worse. It must be more than frustrating and exhausting. It must be terrifying.
I think about how quick I was to give up on finding my sunglasses and do without them, and I wonder how readily people with dementia decide not to bother, to give up looking for the keys, that word, that thing.
Imagine if I’d moved AND had Alzheimer’s. This is precisely what happens in many families. Living alone becomes too dangerous for a grandmother, father, or aunt with Alzheimer’s, or the work of commuting and running two households becomes too much for caregivers living elsewhere. How difficult it must be for someone already coping with an unreliable mind to move to a new home! I’m not saying it’s wrong to have your grandmother, father, or aunt move in with you or to a care facility. I’m just saying---it must be incredibly hard to find the spoons.
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Friday, August 29, 2008
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
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
Wednesday, August 6, 2008
Self-Publish or Perish!
There is this saying in academic science: "Publish or perish!"
We say this because if you don't publish your results in peer-reviewed journals, you won't get the next round of funding, which means you won't have the money to do the next round of experiments, which means you're out of a job.
I no longer work at the lab bench as a neuroscientist. I haven't in ten years now. But this "publish or perish" mantra must've gotten under my skin and into my blood. It gave me just the mentality I needed to become a novelist.
Before I self-published my first novel, STILL ALICE, last summer, I tried going the traditional route. I spent a year querying literary agents. But no one wanted my book. I was sitting in a holding pattern with a completed novel and no one reading it, waiting to find out if STILL ALICE was ‘good enough,’ waiting to find out if I was a ‘real writer,’ unable to give myself permission to write the next book. This was not a fun year.
To the last agent that year who said, “No thanks,” I said, “Okay, then. I’ve had enough of this. I’m self-publishing.”
I’m so grateful I had the confidence to ignore his response:
“Don’t self-publish. You’ll kill your writing career before it begins.”
He couldn’t have been more wrong.
Instead of fearfully sticking my novel in a drawer, I moved forward. I self-published STILL ALICE, and the journey that followed and continues has been the ride of my life! I ultimately still wanted that big publishing house book deal, I just wasn't going to go the traditional route. I was in for almost a year of guerilla marketing, of putting on my armor and battling every day, trying to overcome the stigma of being a self-published author, trying to scale the wall of the publishing house castle.
I listed STILL ALICE on myspace, goodreads, shelfari, and more. I managed my own website and blog. I read David Meerman Scott's The New Rules of Marketing and PR and John Kremer's 1001 Ways to Market Your Books. I scheduled at least two book events a month: Readings and signings at local bookstores, coffee shops, Alzheimer's facilities or conferences, book clubs. And after seven months, after I'd started getting some good feedback and local press, I hired Kelley & Hall Book Publicity to join me in my efforts.
In the three months that I worked with Kelley & Hall, STILL ALICE was featured on television and radio. It was reviewed in newspapers, blogs, and at amazon.com. It was chosen for book clubs, as a staff pick at bookstores, and as a Finalist in General Fiction in the 2008 Next Generation Indie Book Awards. And it won the 2008 Bronte Prize for best love story in North America.
By nine months, things were definitely beginning to vibrate. By ten months, you could hear the BUZZ. Word of mouth and a generous introduction led me to a literary agent who loved my book and within a week of signing our contract, I was inside the castle. STILL ALICE sold at auction to Simon & Schuster for six figures! They’ve sold it to publishing houses in nine other countries with more to follow and plan to release it in the US on January 6, 2009.
We say this because if you don't publish your results in peer-reviewed journals, you won't get the next round of funding, which means you won't have the money to do the next round of experiments, which means you're out of a job.
I no longer work at the lab bench as a neuroscientist. I haven't in ten years now. But this "publish or perish" mantra must've gotten under my skin and into my blood. It gave me just the mentality I needed to become a novelist.
Before I self-published my first novel, STILL ALICE, last summer, I tried going the traditional route. I spent a year querying literary agents. But no one wanted my book. I was sitting in a holding pattern with a completed novel and no one reading it, waiting to find out if STILL ALICE was ‘good enough,’ waiting to find out if I was a ‘real writer,’ unable to give myself permission to write the next book. This was not a fun year.
To the last agent that year who said, “No thanks,” I said, “Okay, then. I’ve had enough of this. I’m self-publishing.”
I’m so grateful I had the confidence to ignore his response:
“Don’t self-publish. You’ll kill your writing career before it begins.”
He couldn’t have been more wrong.
Instead of fearfully sticking my novel in a drawer, I moved forward. I self-published STILL ALICE, and the journey that followed and continues has been the ride of my life! I ultimately still wanted that big publishing house book deal, I just wasn't going to go the traditional route. I was in for almost a year of guerilla marketing, of putting on my armor and battling every day, trying to overcome the stigma of being a self-published author, trying to scale the wall of the publishing house castle.
I listed STILL ALICE on myspace, goodreads, shelfari, and more. I managed my own website and blog. I read David Meerman Scott's The New Rules of Marketing and PR and John Kremer's 1001 Ways to Market Your Books. I scheduled at least two book events a month: Readings and signings at local bookstores, coffee shops, Alzheimer's facilities or conferences, book clubs. And after seven months, after I'd started getting some good feedback and local press, I hired Kelley & Hall Book Publicity to join me in my efforts.
In the three months that I worked with Kelley & Hall, STILL ALICE was featured on television and radio. It was reviewed in newspapers, blogs, and at amazon.com. It was chosen for book clubs, as a staff pick at bookstores, and as a Finalist in General Fiction in the 2008 Next Generation Indie Book Awards. And it won the 2008 Bronte Prize for best love story in North America.
By nine months, things were definitely beginning to vibrate. By ten months, you could hear the BUZZ. Word of mouth and a generous introduction led me to a literary agent who loved my book and within a week of signing our contract, I was inside the castle. STILL ALICE sold at auction to Simon & Schuster for six figures! They’ve sold it to publishing houses in nine other countries with more to follow and plan to release it in the US on January 6, 2009.
Thursday, July 31, 2008
Just Say Yes--And
Just Say Yes—And
It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.
If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:
“Okay! This is a beautiful weave, what is it silk?”
or
“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”
or
“I’m in! Where should we go?”
And the conversation, the relationship, can continue.
If you say:
“No. I don’t want to.”
or
“No, that’s not a magic carpet. That’s an ordinary rug.”
If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.
I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.
Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”
The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”
My turn came around again.
“It’s a glorious, sunny day outside.”
“No, it’s not. It’s dark and cloudy, and it’s going to rain.”
Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.
When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.
“I have the most beautiful 6-month old boy.”
“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”
“It’s a glorious, sunny day outside.”
“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”
In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.
For more information about Healing Moments programs and workshops, go to www.HealingMoments.org
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
It’s the #1 rule in Improvisational Acting. You say, “Yes, and,” to everything you are offered. As actors cooperating to create a fictional reality on stage, you agree to agree, or nothing works.
If your fellow actor says to you, “Come for a ride on my new magic carpet!” your job is to ‘accept the gift’ and join in:
“Okay! This is a beautiful weave, what is it silk?”
or
“I’d love to! This magic carpet is way nicer than my cousin Aladdin’s. His is a ’91, it’s all frayed and worn, and it stalls out all the time. Where did you get it?”
or
“I’m in! Where should we go?”
And the conversation, the relationship, can continue.
If you say:
“No. I don’t want to.”
or
“No, that’s not a magic carpet. That’s an ordinary rug.”
If you deny or negate the reality your fellow actor has offered to you, then you will kill your opportunity to interact in a way that grows and builds and leads you somewhere. If you say No, the scene is dead.
I recently had the good fortune to participate in a Healing Moments workshop which applies this Improvisational Acting rule to communicating with people with Alzheimer’s. By saying Yes—and, by agreeing to the reality a person with Alzheimer’s is experiencing, we can meet them in the present moment and find opportunities to interact in ways that grow and build and lead somewhere.
Here is the exercise I remember most. I was asked to say a simple statement, something I believe to be true. I said, smiling, “I have the most beautiful 6-month old boy.”
The instructor, looking me straight in the eye and without smiling, said, “You do not have a 6-month old baby. Your kids are all grown. You don’t know what you’re talking about.”
My turn came around again.
“It’s a glorious, sunny day outside.”
“No, it’s not. It’s dark and cloudy, and it’s going to rain.”
Here’s what I noticed. Even though I knew this was just an exercise, I didn’t want to talk with this woman. I didn’t like being told I was wrong, I didn’t like the look on her face, and I didn’t like her tone of voice. In fact, I felt my emotions stirred by the interaction, like I was readying to argue or fight.
When the instructor said, “Yes—and,” I felt great. I liked her and wanted to say more.
“I have the most beautiful 6-month old boy.”
“He is gorgeous. Such intelligent eyes. You’re so lucky to have such a beautiful baby.”
“It’s a glorious, sunny day outside.”
“It is. I think the daffodils are in bloom now. Those are my favorite flowers.”
In an improvisational theatre scene, in a conversation with someone with Alzheimer’s, in life, we don’t know what is going to be said or done next. Instead of trying to control what happens or negate what happens, try being present with the person you’re with, go where they ask you to go, and see where it leads you together.
For more information about Healing Moments programs and workshops, go to www.HealingMoments.org
Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com
Wednesday, July 2, 2008
Alzheimer's Ribbon
An Alzheimer's Ribbon is available at Caring.com. Please make your own ribbon and post it on your blog, social networking page, or anywhere else you've got a web presence! For each ribbon posted, Caring.com will donate $10 to the Alzheimer's Association.
http://www.caring.com/ribbons/new
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