Below is the speech given by James Smith at the 2008 Alzheimer's Public Policy Forum Candlelight Vigil earlier this week. His words--moving, clear, and true--blew me away. Like a powerful wind. Changing.
2008 Alzheimer's Public Policy Forum - Candlelight Vigil
Washington, D.C.
Remarks by James W Smith
"Thank you.
It is an incredible honor to be asked to speak to you tonight. And it is especially fitting that we are here at the Capitol reflecting pool, at a time when reflecting inside ourselves - as individuals, as a nation, and as a society - has never been more important.
People have said that in Washington, DC it is easy to tell who our elected officials are. They are the ones standing on the street corner with their moistened fingers held in the air - testing to see which way the wind is blowing. And in order to drive real change here - it does no good to simply replace them with others who will do the same. The way to get real, meaningful change is to change the wind. I want to talk to you tonight about what brings me here - and what brings us
together.
And I am here to ask for your help in changing the wind.
We must help those here in Washington, and those representing us at home feel the power of the changing wind, in order to save our nation and our society from the storm that is already bearing down upon is. It is a storm that will tear us apart as a people and a nation if we do not turn to face it, change our priorities and get in front of it now.
That storm is Alzheimer's Disease.
And so, why am I here tonight? For several reasons. I am here because a little over two years ago I sat frozen in a chair across
from my neurologist at the Mayo Clinic as he said to me, "You have probable Alzheimer's Disease." Five words that changed my life, and the lives of those I love and care for forever.
Up until that day, Alzheimer's was not even on my radar screen. I was a busy IT Director for American Express, with twin daughters just entering college. My wife Juanita and I were entering the second half of what we liked to call "our charmed little life". We were looking forward to so many things as a couple, as a family - and it all shattered in an instant with just five little words - "You have probable Alzheimer's Disease."
And here's the deal. That moment is repeated every 71 seconds in America today. Once every 71 seconds, another person develops Alzheimer's Disease. And that person, and their family must walk out of the Dr.'s office with shattered hearts and lives and dreams and struggle to deal with those five little words and all that they imply. And the pace is accelerating. It is a tragedy in the making. Today there are over 5.2 million people in America diagnosed with Alzheimer's Disease. And by 2050, that number will explode to over 16 million in America, and over 100 million worldwide.
Think about that for a moment...
Sixteen million. Look around you right now. There are less than a thousand people here tonight. If you took those 16 million people - each of whom have been diagnosed with this devastating, incurable, degenerative brain disease - and lined them up
- shoulder to shoulder along the highway - that line would stretch from New York City to Los Angeles, and then turn up the coast for over another 1000 miles.
And if you drove along that highway lined with Alzheimer's patients - you would pass over 3,000 in the first mile. And - standing behind each of those patients - would be 32 million caregivers, and their families, and communities.
And that scenario is EXACTLY what we face if we do not refocus our national priorities and get in front of Alzheimer's now.
I am here tonight because I cannot let that happen. WE can't let that happen. WE cannot let our elected officials stand by and do nothing and allow Alzheimer's Disease to overwhelm us. The next time you are in front of your congressman or senator, ask them this question: "If you knew - without a shadow of a doubt -that someone was bringing to our shores a biological weapon of mass destruction SO POWERFUL that it would kill 16 million American citizens in a crippling, relentless and ruthlessly cruel manner - what would you be willing to do to stop that from happening?"
Not just as an elected leader - but as a human being? Because that biological weapon of mass destruction is already here. That
biological weapon of mass destruction is Alzheimer's. It has already infected over 5 million American citizens - and is attacking a new person every 71 seconds.
Ask your leaders: "What ARE you willing to do to stop this NOW - before it explodes into a tsunami?" Ask yourselves - what am I willing to do?
The sad truth is that if Alzheimer's was smallpox, we would have emergency measures, quarantines, and troops in the streets. Our elected officials would be all over themselves making speeches and passing the necessary emergency directives, and policies and laws and providing whatever funding was necessary to quell the outbreak. We would mount a full-court press as a
nation and WE. WOULD. STOP IT. Where are our leaders tonight? Where is the outcry? Where are the troops? Where are the emergency measures? And most importantly - where is the funding?
We know how to stop Alzheimer's - all we need is the will and the focus and the funding. We are SO CLOSE. If we as a nation had dedicated 1/10th - one 100th of the amount we have spent on the war in Iraq towards Alzheimer's research - Alzheimer's would be CURED. And we would have saved over 10 million lives and trillions of dollars. There is still time. But not much. Nobody else will make this go away for us. We are all - every one of us -responsible for stopping Alzheimer's. It is up to us. If not us, then who -our children?
And if we do nothing - if we simply stand by and watch and let this tragedy play out - we are sentencing 16 million Americans to an early, tragic and unnecessary fate. Make no mistake - if we don't stop it Alzheimer's Disease will impact every
single person in America in one way or another.
That doesn't have to happen. And I committed to helping make sure it doesn't.
And finally, this brings me to the most important reason I am here tonight. And I suspect it is the same reason many of you are here as well. It is the simplest thing in the world - and yet the most powerful. As I mentioned in the beginning, I have two daughters. They are amazing, bright and beautiful girls entering their senior year at Northwestern University this year. They are the light of my life - and I am more proud of them than any words can ever express. Although I understand that the reality is that I may not be alive or aware enough to benefit from the cure that I know in my heart is coming - it will come. It simply has to. The price of failure is too high.
And when it does - when that day comes that we no longer have to fear the terrible scourge of Alzheimer's - I want my daughters to know that I what I did here tonight - and what I did here this week - I did for them.
Thank you."
Friday, May 16, 2008
Wednesday, May 7, 2008
Emotions Unleashed
Not too long ago, I studied acting for a year and a half. As with any approach to acting, the ultimate goal was to ‘live truthfully under imaginary circumstances.’ You don’t pretend to be enraged, grief-stricken, or in love, you actually feel these things in response to what happens. And when an actor is able to achieve this, the effect on the audience is powerful (I always think of Shirley MacLaine screaming in a heartsick rage on the beach with Jack Nicholson in Terms of Endearment. She moves me instantly to tears every time).
As grown adults, my classmates and I found this goal to be an extraordinarily difficult one to grasp. To respond readily with honest emotion, you must be able to turn off your ‘internal editor’ or your self-consciousness, your ‘monkey mind’. This is the part of your brain, that internal voice, that says to you, “Don’t say that! What will people think?” Or, “Don’t do that! You’ll be so embarrassed.” Or, “If you do that, the other actors and the audience will think you’re stupid, a jerk, or crazy.”
We’ve been socialized not to express our raw, primal emotions. We learn not to scream when we’re angry or cry when we’re sad. When we were two years old and felt overwhelmed or perceived some horrible injustice, we might’ve readily thrown ourselves onto the ground, screaming and writhing in pure anguish. But our (humiliated) parents told us not to do this, maybe punished us or refused attention, extinguishing the behavior, and gave us other tools to use other than expressing the emotion, like ‘using our words.’
Biologically, neurons from the cortex—the brain’s higher thinking centers—form powerful inhibitory connections on the neurons in the brain’s emotion centers. So raw emotion becomes strongly inhibited. Our primary job as actors is to release this inhibition and let the natural emotion happen. I remember watching a toddler throwing a fit in a store one day while I was in the middle of my training and thinking, “If only I could do that!”
Some of you caring for someone with Alzheimer’s and even some of you with Alzheimer’s may’ve noticed this disinhibition of the brain’s primary emotion centers--
Grandpa was always a quiet, reasonable man, and now he’s prone to explosions of loud, scary anger.
Grandma had always been a polite and proper lady, and now she’s being sexually provocative with the men in line at the grocery store.
What’s going on?
Alzheimer’s Disease doesn’t just disrupt memory. It also interferes with those inhibitory connections descending from the cortex to the brain’s emotion centers. Without those inhibitory signals, the emotion centers are free and clear to fire away—Rage! Grief! Lust!
So when someone with Alzheimer’s is reacting with uncharacteristic and unapologetic emotion, he or she isn’t becoming someone else or trying to be difficult. The part of the brain that learned emotional restraint is under attack. They don’t have the neurons they need to dampen or bury it. And, because this disease has likely attacked other parts of the brain involved in language, they may not have the communication skills to ‘use their words.’
My grandmother, who’d always leaned toward flirtatious, became at times embarrassingly outright with her sexuality when she had Alzheimer’s. She would’ve made a great actress. If only she could’ve remembered her lines.
Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com
As grown adults, my classmates and I found this goal to be an extraordinarily difficult one to grasp. To respond readily with honest emotion, you must be able to turn off your ‘internal editor’ or your self-consciousness, your ‘monkey mind’. This is the part of your brain, that internal voice, that says to you, “Don’t say that! What will people think?” Or, “Don’t do that! You’ll be so embarrassed.” Or, “If you do that, the other actors and the audience will think you’re stupid, a jerk, or crazy.”
We’ve been socialized not to express our raw, primal emotions. We learn not to scream when we’re angry or cry when we’re sad. When we were two years old and felt overwhelmed or perceived some horrible injustice, we might’ve readily thrown ourselves onto the ground, screaming and writhing in pure anguish. But our (humiliated) parents told us not to do this, maybe punished us or refused attention, extinguishing the behavior, and gave us other tools to use other than expressing the emotion, like ‘using our words.’
Biologically, neurons from the cortex—the brain’s higher thinking centers—form powerful inhibitory connections on the neurons in the brain’s emotion centers. So raw emotion becomes strongly inhibited. Our primary job as actors is to release this inhibition and let the natural emotion happen. I remember watching a toddler throwing a fit in a store one day while I was in the middle of my training and thinking, “If only I could do that!”
Some of you caring for someone with Alzheimer’s and even some of you with Alzheimer’s may’ve noticed this disinhibition of the brain’s primary emotion centers--
Grandpa was always a quiet, reasonable man, and now he’s prone to explosions of loud, scary anger.
Grandma had always been a polite and proper lady, and now she’s being sexually provocative with the men in line at the grocery store.
What’s going on?
Alzheimer’s Disease doesn’t just disrupt memory. It also interferes with those inhibitory connections descending from the cortex to the brain’s emotion centers. Without those inhibitory signals, the emotion centers are free and clear to fire away—Rage! Grief! Lust!
So when someone with Alzheimer’s is reacting with uncharacteristic and unapologetic emotion, he or she isn’t becoming someone else or trying to be difficult. The part of the brain that learned emotional restraint is under attack. They don’t have the neurons they need to dampen or bury it. And, because this disease has likely attacked other parts of the brain involved in language, they may not have the communication skills to ‘use their words.’
My grandmother, who’d always leaned toward flirtatious, became at times embarrassingly outright with her sexuality when she had Alzheimer’s. She would’ve made a great actress. If only she could’ve remembered her lines.
Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com
Friday, May 2, 2008
Busting The Myth of Alzheimer's
Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer's. In it, they claim that "there is no such thing as Alzheimer's Disease." "Alzheimer's Disease represents our culture's attempt to make sense of the natural process of brain aging that we cannot fully control." So, in an attempt to control it, "we've created an antagonist" and named it Alzheimer's Disease.
They claim that because we don't know the "singular cause" of Alzheimer's, because we can't cure it, and because we can't differentiate Alzheimer's from normal brain aging, we should stop diagnosing people with this "label." Labeling someone with Alzheimer's only causes them harm from the stigma attached to it. We should stop treating people with Alzheimer's medications, and we should certainly stop looking for a cure. Dementia is just normal aging, and you can't cure aging.
Wow. Where do I begin?
Let's start with cancer. We don't know yet what causes cancer or how to cure it. We treat it with crude, non-specific poisons that risk the very life of the person who takes them. There used to be a HUGE stigma attached to having cancer. Remember when everyone called it "the big C?" Cancer is not caused by one singular process. It is caused by a complex interaction between genetic and environmental influences. Should we not call cancer a disease? Of course not. Do we not tell someone they have cancer because of the stigma that might be placed on them? Of course not. Do my chances of developing cancer increase as I age? Yes, they do. Is cancer a normal part of normal aging? No, it is not.
Likewise, we can think about heart disease. Do most people develop accumulations of plaque in their arteries as they get older? Yes, they do. If untreated, will most people develop cardiovascular disease if they live long enough? Yes, they will. So is having cardiovascular disease a normal part of normal aging? No. Over the course of 50-100 years, we, as human beings who eat fatty foods and don't exercise enough, develop plaques that clog our blood vessels. This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack. Do we just accept this as normal aging and do nothing about it? No, we do not. We diet and exercise. We go to the doctor and get tested to see how much plaque we might have blocking our arteries. And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.
Proclaiming that Alzheimer's is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.
Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer's Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia. This process causes disease. A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.
Normal aging is forgetting someone's name. Alzheimer's is forgetting your spouse's name.
Yes, diagnosis is tricky today. We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer's Disease. An MRI is not sensitive enough. A blood test won't reveal it. Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates. Pencil and paper tests are only so telling. Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives. It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant. The diagnostic process may be imperfect, but we use every piece of information we have available today. Just because diagnosing Alzheimer's today is difficult, it doesn't mean that there isn't a disease there to diagnose!
And we should diagnose Alzheimer's if it's there. Why? Because we can treat it with Aricept and Namenda. Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active. Convincing people that Alzheimer's is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.
Maybe, in the future, we will be able to treat this disease without saying the words "You have Alzheimer's Disease." My grandfather died in 1978 of heart failure at the age of 69. My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.
Maybe, in the future, the treatment of Alzheimer's will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you're at risk for developing Alzheimer's, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.
Growing old without Alzheimer's.
But we have to bust Whitehouse and George's myth and acknowledge first that Alzheimer's is a disease.
Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com
They claim that because we don't know the "singular cause" of Alzheimer's, because we can't cure it, and because we can't differentiate Alzheimer's from normal brain aging, we should stop diagnosing people with this "label." Labeling someone with Alzheimer's only causes them harm from the stigma attached to it. We should stop treating people with Alzheimer's medications, and we should certainly stop looking for a cure. Dementia is just normal aging, and you can't cure aging.
Wow. Where do I begin?
Let's start with cancer. We don't know yet what causes cancer or how to cure it. We treat it with crude, non-specific poisons that risk the very life of the person who takes them. There used to be a HUGE stigma attached to having cancer. Remember when everyone called it "the big C?" Cancer is not caused by one singular process. It is caused by a complex interaction between genetic and environmental influences. Should we not call cancer a disease? Of course not. Do we not tell someone they have cancer because of the stigma that might be placed on them? Of course not. Do my chances of developing cancer increase as I age? Yes, they do. Is cancer a normal part of normal aging? No, it is not.
Likewise, we can think about heart disease. Do most people develop accumulations of plaque in their arteries as they get older? Yes, they do. If untreated, will most people develop cardiovascular disease if they live long enough? Yes, they will. So is having cardiovascular disease a normal part of normal aging? No. Over the course of 50-100 years, we, as human beings who eat fatty foods and don't exercise enough, develop plaques that clog our blood vessels. This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack. Do we just accept this as normal aging and do nothing about it? No, we do not. We diet and exercise. We go to the doctor and get tested to see how much plaque we might have blocking our arteries. And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.
Proclaiming that Alzheimer's is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.
Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer's Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia. This process causes disease. A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.
Normal aging is forgetting someone's name. Alzheimer's is forgetting your spouse's name.
Yes, diagnosis is tricky today. We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer's Disease. An MRI is not sensitive enough. A blood test won't reveal it. Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates. Pencil and paper tests are only so telling. Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives. It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant. The diagnostic process may be imperfect, but we use every piece of information we have available today. Just because diagnosing Alzheimer's today is difficult, it doesn't mean that there isn't a disease there to diagnose!
And we should diagnose Alzheimer's if it's there. Why? Because we can treat it with Aricept and Namenda. Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active. Convincing people that Alzheimer's is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.
Maybe, in the future, we will be able to treat this disease without saying the words "You have Alzheimer's Disease." My grandfather died in 1978 of heart failure at the age of 69. My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.
Maybe, in the future, the treatment of Alzheimer's will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you're at risk for developing Alzheimer's, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.
Growing old without Alzheimer's.
But we have to bust Whitehouse and George's myth and acknowledge first that Alzheimer's is a disease.
Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com
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