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?
Friday, September 24, 2010
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
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