Lisa Genova's Blog, page 5
October 3, 2012
Piece I wrote for the Autism Speaks Blog
I didn’t want to write about autism. Not yet. I’m a neuroscientist who writes novels, and as of today, we know frustratingly, embarrassingly little about the neuroscience of autism.
I looked through The Principles of Neuroscience, the core textbook, the neurological Bible of my graduate school days at Harvard in the 90s, and there’s no mention of autism. Not a single word. It’s not referenced, in fact, in any of my Harvard texts. The current research on gene expression, neurochemistry, neurophysiology, and circuitry is too early, not definitive, unknown.
Autism in 2012 is still very much in the hands of psychiatry and psychology, in nomenclature and behavior. How do we organize the symptoms? What should we call them? How do we manage them through behavior modification? Psychiatrists prescribe inadequate medications. Psychologists administer Applied Behavioral Analysis.
Our understanding of autism today is mostly limited to a discussion of restricted, repetitive behaviors and deficits in social communication. But what are the altered neural connections and molecules responsible for these symptoms? Neuroscience doesn’t yet know.
So as a neuroscientist, I wasn’t at all ready to write a novel about autism. But as it turns out, the novel was ready for me.
My cousin Tracey and I were both pregnant in 2000. She had twins, a boy and a girl, and I had a girl. We became new mothers at the same time, and it drew us close. We were together in our living rooms, kitchens, and backyards, sharing our exhaustion and joy, dreaming of our children growing up. We imagined it all. School plays, soccer and baseball games, prom, college. Of course, our daughters would be maids of honor in each other’s weddings. They would all be brilliant and beautiful, and we would be proud and happy.
But then, something wasn’t right with Tracey’s son. At first she thought he might be deaf. He wasn’t responding to her voice. But clearly, he could hear. He wasn’t talking like his sister or my daughter. I told her not to worry. Boys are often slower than girls to develop language. He wouldn’t play like or with our daughters. He wanted to watch Barney over and over. He wanted to be alone.
From our living rooms, kitchens, and backyards, I watched what happened next unfold, disbelieving, scared, heartbroken. I watched our girls skip effortlessly each year in the direction we had dreamed about as Tracey’s son struggled with each developmental step, landing each time somewhere entirely different, unexpected, unimaginable. I was there for early intervention, ABA therapy, floor time, picture exchange, special diets. Anything and everything that offered a way back to the boy we dreamed about.
Our children are twelve now. Tracey’s son has autism, and he is still mostly nonverbal. He can’t play on the baseball team, act in the school play, or say, “I love you.” In twelve years, we haven’t learned enough neuroscience to change his autism. But Tracey changed. We changed. In our living rooms, kitchens, and backyards, I still see and feel moments of anger and heartache, but the despair is gone. Most often now, I witness and feel acceptance and peace, the coalescence of new dreams for her son, different than the dreams for our daughters yet still full of meaning, pride, and joy. Where there was once terror and despair, I now see and feel unconditional love.
In 2009, I was on my way from Cape Cod to Logan Airport, leaving for a Still Alice book event in Denver. I’d just signed a new two-book deal with Simon & Schuster and was preoccupied with the entirely unknown subject of the second novel (I’d already begun writing Left Neglected). I closed my eyes in the back seat and meditated. I might’ve fallen asleep, but I don’t think I did.
Stephen King says that “stories are found things.” He believes they already exist, and the writer’s job is to excavate them like fossils from the earth. Elizabeth Gilbert poses that creative ideas come not from us, but through us from a magical, divine source.
After that ride to the airport, I see the obvious truth in both of these beliefs. When I arrived at Logan, I knew that my next book would be about autism. It would be about a nonverbal, autistic boy who died following a seizure. It would be about his mother who is searching for answers, for peace. It would be about another woman who is trying to make a decision about her marriage and the life she wants. It would be about the connection between these two women, finding the answers they need through the voice of a voiceless boy. The book would be about autism, but it wouldn’t be about neuroanatomy or genetics. It would be about the ways in which we’re all connected, how we’re all worthy of dreams. It would be about denial and despair, acceptance and peace. It would be about unconditional love. And the title of the book would be Love Anthony.
I looked through The Principles of Neuroscience, the core textbook, the neurological Bible of my graduate school days at Harvard in the 90s, and there’s no mention of autism. Not a single word. It’s not referenced, in fact, in any of my Harvard texts. The current research on gene expression, neurochemistry, neurophysiology, and circuitry is too early, not definitive, unknown.
Autism in 2012 is still very much in the hands of psychiatry and psychology, in nomenclature and behavior. How do we organize the symptoms? What should we call them? How do we manage them through behavior modification? Psychiatrists prescribe inadequate medications. Psychologists administer Applied Behavioral Analysis.
Our understanding of autism today is mostly limited to a discussion of restricted, repetitive behaviors and deficits in social communication. But what are the altered neural connections and molecules responsible for these symptoms? Neuroscience doesn’t yet know.
So as a neuroscientist, I wasn’t at all ready to write a novel about autism. But as it turns out, the novel was ready for me.
My cousin Tracey and I were both pregnant in 2000. She had twins, a boy and a girl, and I had a girl. We became new mothers at the same time, and it drew us close. We were together in our living rooms, kitchens, and backyards, sharing our exhaustion and joy, dreaming of our children growing up. We imagined it all. School plays, soccer and baseball games, prom, college. Of course, our daughters would be maids of honor in each other’s weddings. They would all be brilliant and beautiful, and we would be proud and happy.
But then, something wasn’t right with Tracey’s son. At first she thought he might be deaf. He wasn’t responding to her voice. But clearly, he could hear. He wasn’t talking like his sister or my daughter. I told her not to worry. Boys are often slower than girls to develop language. He wouldn’t play like or with our daughters. He wanted to watch Barney over and over. He wanted to be alone.
From our living rooms, kitchens, and backyards, I watched what happened next unfold, disbelieving, scared, heartbroken. I watched our girls skip effortlessly each year in the direction we had dreamed about as Tracey’s son struggled with each developmental step, landing each time somewhere entirely different, unexpected, unimaginable. I was there for early intervention, ABA therapy, floor time, picture exchange, special diets. Anything and everything that offered a way back to the boy we dreamed about.
Our children are twelve now. Tracey’s son has autism, and he is still mostly nonverbal. He can’t play on the baseball team, act in the school play, or say, “I love you.” In twelve years, we haven’t learned enough neuroscience to change his autism. But Tracey changed. We changed. In our living rooms, kitchens, and backyards, I still see and feel moments of anger and heartache, but the despair is gone. Most often now, I witness and feel acceptance and peace, the coalescence of new dreams for her son, different than the dreams for our daughters yet still full of meaning, pride, and joy. Where there was once terror and despair, I now see and feel unconditional love.
In 2009, I was on my way from Cape Cod to Logan Airport, leaving for a Still Alice book event in Denver. I’d just signed a new two-book deal with Simon & Schuster and was preoccupied with the entirely unknown subject of the second novel (I’d already begun writing Left Neglected). I closed my eyes in the back seat and meditated. I might’ve fallen asleep, but I don’t think I did.
Stephen King says that “stories are found things.” He believes they already exist, and the writer’s job is to excavate them like fossils from the earth. Elizabeth Gilbert poses that creative ideas come not from us, but through us from a magical, divine source.
After that ride to the airport, I see the obvious truth in both of these beliefs. When I arrived at Logan, I knew that my next book would be about autism. It would be about a nonverbal, autistic boy who died following a seizure. It would be about his mother who is searching for answers, for peace. It would be about another woman who is trying to make a decision about her marriage and the life she wants. It would be about the connection between these two women, finding the answers they need through the voice of a voiceless boy. The book would be about autism, but it wouldn’t be about neuroanatomy or genetics. It would be about the ways in which we’re all connected, how we’re all worthy of dreams. It would be about denial and despair, acceptance and peace. It would be about unconditional love. And the title of the book would be Love Anthony.
September 28, 2012
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!”
September 23, 2012
Love Anthony - Book Launch September 25, 2012
Love Anthony - Book Launch Party
Where the Sidewalk Ends Bookstore
432 Main Street
Chatham, MA 02633
September 25, 2012 at 7:00pm
Praise for Love Anthony
"Love Anthony broke my heart in the best way! I read it spellbound and breathless. If you don't know Lisa Genova's work already, meet your new favorite writer, storyteller, enchanter."
--Heidi W. Durrow, New York Times bestselling author of The Girl Who Fell From the Sky
"Lisa Genova has essentially created her own genre, the 'Lisa Genova' novel, in which complicated topics become accessible to readers through beautifully-drawn characters and profound, human-scale stories. Love Anthony dares to ask enormous questions, the big questions that bedevil all of us. Better yet, Genova has the wisdom to know which ones can be answered, and which cannot."
-–Laura Lippman, New York Times bestselling author of What the Dead Know
“Autism is like a Zen kōan—a riddle without answers, with effects that are myriad, mysterious, and confounding. The same could be said about love. Love Anthony upended my perceptions of both conditions, leaving me feeling with my mind and thinking with my heart. Everyone should read this book!
--Jamie Ford, bestselling author of Hotel on the Corner of Bitter and Sweet
"Genova's deep and empathic insight once again has blown me away -particularly her intensely accurate portrayal of autism parenting. Her characters are complicated people, with unique, believable and sometimes frustrating struggles. But perhaps Genova's true mastery is in the way she never fails to give us very real people to love. "
--Susan Senator, author of Making Peace With Autism.
Where the Sidewalk Ends Bookstore
432 Main Street
Chatham, MA 02633
September 25, 2012 at 7:00pm
Praise for Love Anthony
"Love Anthony broke my heart in the best way! I read it spellbound and breathless. If you don't know Lisa Genova's work already, meet your new favorite writer, storyteller, enchanter."
--Heidi W. Durrow, New York Times bestselling author of The Girl Who Fell From the Sky
"Lisa Genova has essentially created her own genre, the 'Lisa Genova' novel, in which complicated topics become accessible to readers through beautifully-drawn characters and profound, human-scale stories. Love Anthony dares to ask enormous questions, the big questions that bedevil all of us. Better yet, Genova has the wisdom to know which ones can be answered, and which cannot."
-–Laura Lippman, New York Times bestselling author of What the Dead Know
“Autism is like a Zen kōan—a riddle without answers, with effects that are myriad, mysterious, and confounding. The same could be said about love. Love Anthony upended my perceptions of both conditions, leaving me feeling with my mind and thinking with my heart. Everyone should read this book!
--Jamie Ford, bestselling author of Hotel on the Corner of Bitter and Sweet
"Genova's deep and empathic insight once again has blown me away -particularly her intensely accurate portrayal of autism parenting. Her characters are complicated people, with unique, believable and sometimes frustrating struggles. But perhaps Genova's true mastery is in the way she never fails to give us very real people to love. "
--Susan Senator, author of Making Peace With Autism.
September 11, 2012
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?
August 28, 2012
IndieReader.com
As a formerly self-published author, I can't help but keep my eyes and ears open for great tools for the guerrilla marketing writer. Here's an exciting website 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.
So, if you're a self-published author, get on Facebook, 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.
So, if you're a self-published author, get on Facebook, 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.
August 23, 2012
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.”
August 16, 2012
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?
August 8, 2012
Notes from My LOVE ANTHONY Writing Journal, 11/30/11
Just realized I'm on chapter 20. Sounds substantial, doesn't it? I'm at about 46,000 words and 200 pages, so it's getting there, baby. I go back and forth lately between thinking it's brilliant to thinking it's an absolute mess. I'm worried that Beth's story doesn't tie in strongly enough to Olivia's, that it's like--SO WHAT? Why not just tell Olivia's and Anthony's story?
I think because their story is too internal. Beth's story provides the movement, the action and immediacy. But why not tell Olivia's story in that way--tell the story of this mother who has a son with autism, how she first suspects it, then the diagnosis, living with it, etc--and make it linear? Because that's too predictable. It's been done. Mother has a child, expects a "normal" life, then there is a diagnosis and a deviated development, a deviated life. This mother's point of view has been told.
I'm hoping that this story offers something new and unexpected, that readers will learn about the experience of autism from the more severely affected end of the spectrum without feeling like they're reading a clinical manual, without being hit directly over the head with it. I want to tell a great story and give a voice to this voiceless child. How does he experience the world, emotions, relationships? How does his life matter? I want readers to experience what it might feel like to have this kind of autism. I think a straightforward, linear story of only Olivia and Anthony without Beth doesn't hold as much power somehow.
So finish the first draft, Lisa, and if there are ways that you can tighten Beth's ties to autism in metaphor, do it then. You've planted the seeds. Make sure that elements from each Anthony and Olivia chapter tie in to elements of Beths' chapters--illustrate that the spectrum is long and wide, and we're all on it. And then it will be brilliant, my dear. And when the first draft is done, have Tracey read it, and listen with an open heart to her feedback.
For now though, you are writing chapter 20. So what happens next?
I think because their story is too internal. Beth's story provides the movement, the action and immediacy. But why not tell Olivia's story in that way--tell the story of this mother who has a son with autism, how she first suspects it, then the diagnosis, living with it, etc--and make it linear? Because that's too predictable. It's been done. Mother has a child, expects a "normal" life, then there is a diagnosis and a deviated development, a deviated life. This mother's point of view has been told.
I'm hoping that this story offers something new and unexpected, that readers will learn about the experience of autism from the more severely affected end of the spectrum without feeling like they're reading a clinical manual, without being hit directly over the head with it. I want to tell a great story and give a voice to this voiceless child. How does he experience the world, emotions, relationships? How does his life matter? I want readers to experience what it might feel like to have this kind of autism. I think a straightforward, linear story of only Olivia and Anthony without Beth doesn't hold as much power somehow.
So finish the first draft, Lisa, and if there are ways that you can tighten Beth's ties to autism in metaphor, do it then. You've planted the seeds. Make sure that elements from each Anthony and Olivia chapter tie in to elements of Beths' chapters--illustrate that the spectrum is long and wide, and we're all on it. And then it will be brilliant, my dear. And when the first draft is done, have Tracey read it, and listen with an open heart to her feedback.
For now though, you are writing chapter 20. So what happens next?
July 31, 2012
Tantrums in Sacred Spaces
I've listened to a lot of writers talk about having "sacred spaces" for writing. Places that are pristine, quiet, beautiful. I always listen, nod, and smile.
If you've been to one of my talks or follow me on Facebook, you know I write at Starbucks. It's noisy and busy, and people know I write here now, so there's usually a distraction or two or four. The table I'm at now is wobbly, and the chair isn't ergonomically designed to protect my lumbar spine. But I love it here. It's my sacred space.
I write at Starbucks instead of in my beautiful home office because if I write at home, I end up not writing. Ethan will ask me to fix the wheel on one of his trucks, Stella will press her pudgy face up against the glass of the French doors and cry for me, Alena will come in and want to chat about jump rope or school or the funny thing she just thought about. And I can't resist any of it. Or I'll think, "I really should throw in a load of laundry," or "I have bills to pay," or "I wonder if we have any chocolate?"
So I write at Starbucks.
And the Starbucks nearest me is tucked inside a Stop & Shop. With a book deadline, three kids, two in diapers, and one drinking formula, this basically means I'm here ALL THE TIME. Seriously, how many of you hug and kiss the woman who checks out your groceries? I do because I feel like I know her that well.
I was here this weekend with all three kids because I needed to pick up food for dinner. To make the chore more fun for Alena and Ethan, I told them I'd get them a treat at Starbucks. I knew Alena would want an iced chai (like her mom), and Ethan would want an apple fritter. He's obsessed with them.
So we're in line, and for no reason whatsoever, Ethan winds up and slaps Alena. We still don't know why he committed this crime. I'm blaming systemic testosterone. Toxic stuff.
I said, "Ethan, you can't hit Alena. Tell her you're sorry."
He stared at me. No way. Not happening.
"Okay, Ethan, that's not a good choice. You hit her, and you won't say sorry. You're not getting a fritter. You sure about this?"
No apology.
Alena gets her iced chai, Ethan gets nothing. Ethan then throws the biggest tantrum Starbucks and Stop & Shop have ever seen. As he was losing his mind on the floor of Starbucks, I actually laughed to myself, thinking, "There's no screaming in my sacred space!"
I'm in Starbucks now, writing in my imperfect yet sacred space. And everyone here is still talking about the tantrum...
If you've been to one of my talks or follow me on Facebook, you know I write at Starbucks. It's noisy and busy, and people know I write here now, so there's usually a distraction or two or four. The table I'm at now is wobbly, and the chair isn't ergonomically designed to protect my lumbar spine. But I love it here. It's my sacred space.
I write at Starbucks instead of in my beautiful home office because if I write at home, I end up not writing. Ethan will ask me to fix the wheel on one of his trucks, Stella will press her pudgy face up against the glass of the French doors and cry for me, Alena will come in and want to chat about jump rope or school or the funny thing she just thought about. And I can't resist any of it. Or I'll think, "I really should throw in a load of laundry," or "I have bills to pay," or "I wonder if we have any chocolate?"
So I write at Starbucks.
And the Starbucks nearest me is tucked inside a Stop & Shop. With a book deadline, three kids, two in diapers, and one drinking formula, this basically means I'm here ALL THE TIME. Seriously, how many of you hug and kiss the woman who checks out your groceries? I do because I feel like I know her that well.
I was here this weekend with all three kids because I needed to pick up food for dinner. To make the chore more fun for Alena and Ethan, I told them I'd get them a treat at Starbucks. I knew Alena would want an iced chai (like her mom), and Ethan would want an apple fritter. He's obsessed with them.
So we're in line, and for no reason whatsoever, Ethan winds up and slaps Alena. We still don't know why he committed this crime. I'm blaming systemic testosterone. Toxic stuff.
I said, "Ethan, you can't hit Alena. Tell her you're sorry."
He stared at me. No way. Not happening.
"Okay, Ethan, that's not a good choice. You hit her, and you won't say sorry. You're not getting a fritter. You sure about this?"
No apology.
Alena gets her iced chai, Ethan gets nothing. Ethan then throws the biggest tantrum Starbucks and Stop & Shop have ever seen. As he was losing his mind on the floor of Starbucks, I actually laughed to myself, thinking, "There's no screaming in my sacred space!"
I'm in Starbucks now, writing in my imperfect yet sacred space. And everyone here is still talking about the tantrum...
July 15, 2012
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, 62, 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
“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
“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, 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 – 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
“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, 62, 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
“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
“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, 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 – 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
