Today a nice physical therapist came to assess a treatment program for Dad—to help him regain his balance and mobility and in so doing help him milk the summer ahead of us. A couple hours later, while sitting at the table Dad asked me in an unusually clear voice, "What's the agenda?" I looked up […]
Well, if this isn’t the best gift to buy for someone with early stages Alzheimer’s, I don’t know what is! Probably the one symptom that scares Alzheimer’s victims the most–and turns them into instant hermits–is geographic memory loss. Going out for a walk or a drive and suddenly not knowing where you are or how […]
Today the world has been given the very bad news that there is nothing that can help prevent or slow the progression of Alzheimer’s. The disease is a thief and a murderer, and nothing can stand in its way. I say the folks who did these studies need to study Mom. Round out the evidence […]
It's just one doctor after another these days…
We barely got to the clinic and we were both already exhausted: Dad from getting dressed, fed, squeezed into a jacket, compressed into the car, ejected from the car, and hung in a wheelchair. Me from doing all that to him without the cooperation of his muscles. We didn’t even want to go into the clinic. I told Dad that what we should do is write a children's book about aging and how fun it is. Dad laughed. I said we could describe how you get to ride around in a cool scooter—even inside the house. And how you get to have cool leopard print all over your skin without paying a cent for it. And how if you get skin cancer on your ear, you have to have a chunk cut off (like Dad) and then you can fit right in with the folks at Rivendell or Lothlorien.
I really see some potential there.
Might as well take this big old lemon and make lemonade.
(P.S. If you have any more ideas for the book, let me know)
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease.
Here is why I think there is an inherent problem with this guideline:
If you go the the Alzheimer’s Association website and take the interactive tour of a brain with Alzheimer’s (a fantastic tool!), you will notice that there is a general pattern to the progression of Alzheimer’s and its accompanying symptoms. Specifically, looking at slide 13 you will see that the first part of the brain to be affected by Alzheimer’s is the inner core where the hippocampus resides—that part of the brain responsible for short-term memory. From there, damage spreads outwards to the cortex of the various lobes. As the second image in slide 13 shows, the Frontal Cortex is affected in mid stages of Alzheimer’s. This area is responsible for attention, social skills and intelligence (or wit). It is associated with “personality.”
Now, if an effective drug for Alzheimer’s were to be developed, you would expect to see the least damaged areas respond first, followed by the most heavily damaged areas.
Such were the preliminary results of the clinical trial of Dimebon. In reading the various anecdotal accounts of the Dimebon trial (see Bob DeMarco’s piece on the Alzheimer’s Reading Room), the results seemed to show precisely this initial response: Alzheimer’s sufferers reported increased alertness, social skills, and wit. Here is a sample quote from the various testimonials:
The major drug companies are focusing on memory. Are they after the right target? I’ll tell you this, in weeks 6 through 18 in the Dimebon clinical trial my mother was more engaged with me, more aware of her surroundings, more interesting, and more like her “old” self then she had been in six years.
The least damaged areas of the brain were affected in the 12-week trial! Then the trial was stopped because the inner (most damaged) area of the brain showed no marked improvement.
Would it not make sense to glean from the trial that a logical reverse course of the disease was set in motion and to continue it to see if the pattern held?
Pfizer et al, could you give us another 12 weeks when studying Alzheimer’s please?!
[Note: this analysis is mine alone. It may not be true that the least affected areas would show improvement first]
Like the title of this blog says, there are things to be learned from all kinds of dementias. Here is a particularly astounding thing to learn: severe autism does not necessarily mean the sufferer is mentally retarded. This video will shock you into looking beyond the outward appearance of those who cannot communicate and into the soul.
Sometimes I wonder how much like this girl my mother is. How much does she really know about what’s going on around her?
Here’s what happened: I’m not a “from scratch” web coder, so I installed what’s called a “theme” for my niece’s website and used it as a springboard to create a look that would capture her life and style.
A lot of work goes into designing the look of a website, but it has to pale in comparison to all the work that goes into creating themes, or “platforms” on which creative designs are based. By the time I get my hands on designing a website, all the hard prep work has been done, and I’m presented with a lovely spring board that allows me to jump and flip and fly wherever my creative juices lead.
It’s a very painful fact that I miss Dad and that I wish I had spent more “being time” with him instead of dividing my time between being and being productive. As I’ve mentioned before, in hindsight, all you want is to be near the one you’ve lost just a few more minutes. Nothing else matters but being in the person’s presence and having them know you are there.
I want to do this with Mom, but Alzheimer’s presents a huge problem. Whenever I see Mom sitting alone, it kills me because she looks so terribly alone. So I go sit with her, and on a good day—most days—she is riveted with my presence. But the second I leave her sight—to fling clothes from the washer to the dryer; to use the bathroom; to make a cup of tea—she is completely alone again. And in those moments—from her perspective—she has always been and always will be alone. There is no memory of my having been in her presence all morning other than a few moments of necessary “productive time.”
I hate this disease. There is no sufficient quality time you can give someone with Alzheimer’s. As a caregiver, it feels like there is no neutral status for you as a human being: you are either benevolent or malevolent; sacrificial or selfish; worthy or worthless.
Alzheimer’s isn’t a one-man disease; it does a pretty good job of spreading the pain around.
We are continually hearing that Medicare is going to go bankrupt by mid-century thanks to the skyrocketing costs of an aging population in need of prescription drugs and dementia care.
Medicare Part D costs to the government in 2010 were $62 billion and are projected to climb to $150 billion by 2019. And Medicare costs for Alzheimer’s care will increase more than 600 percent, from $88 billion today to $627 billion in 2050.
Here is a double-barreled solution to the costs of Medicare Part D and Alzheimer’s care: replace prescription drugs with equally effective placebos and employ mildly-cognitively-impaired individuals as healthcare enhancement agents.
This is not a joke. Here is why this would work and save the federal government billions:
Placebos—if delivered properly—could potentially be more effective and considerably less costly than many current prescription drugs.
Here is an example of an experiment with placebos for a “purely physical ailment”:
One group was simply put on a waiting list; researchers know that some patients get better just because they sign up for a trial. Another group received placebo treatment from a clinician who declined to engage in small talk. Volunteers in the third group got the same sham treatment from a clinician who asked them questions about symptoms, outlined the causes of [their ailment], and displayed optimism about their condition.
Not surprisingly, the health of those in the third group improved most. In fact, just by participating in the trial, volunteers in this high-interaction group got as much relief as did people taking the two leading prescription drugs for IBS. And the benefits of their bogus treatment persisted for weeks afterward, contrary to the belief—widespread in the pharmaceutical industry—that the placebo response is short-lived.
It has been found that placebos can sometimes work even better than the leading prescription drug for any given disease, with certain factors contributing to their effectiveness:
Yellow pills make the most effective antidepressants, like little doses of pharmaceutical sunshine. Red pills can give you a more stimulating kick. Wake up, Neo. The color green reduces anxiety, adding more chill to the pill. White tablets—particularly those labeled “antacid”—are superior for soothing ulcers, even when they contain nothing but lactose. More is better, scientists say. Placebos taken four times a day deliver greater relief than those taken twice daily. Branding matters. Placebos stamped or packaged with widely recognized trademarks are more effective than “generic” placebos. Clever names can add a placebo boost to the physiological punch in real drugs. Viagra implies both vitality and an unstoppable Niagara of sexy.
If you’re thinking that the suggestion of using placebos is unethical, check out this study:
“Not only did we make it absolutely clear that these pills had no active ingredient and were made from inert substances, but we actually had ‘placebo’ printed on the bottle,” says Kaptchuk. “We told the patients that they didn’t have to even believe in the placebo effect. Just take the pills.”
The participants were monitored for three weeks and, at the end of the trial, 59% of the patients given the placebo reported ample symptom improvement as compared to 35% of the control group. Furthermore, participants who took the placebo had rates of improvement about equal to the effects of the most powerful IBS drugs.
Deception is unethical. Honesty is not. If there is a joke it’s in the current medical practice of prescribing expensive drugs that are sold without the most important ingredient that made them effective in the trials—the same ingredient that makes placebos effective.
As we would all imagine, the most important factor in the effectiveness of placebos is the doctor’s bedside manner. That is, the presence of compassion in the treatment of an ailment.
Regarding a Cognitively Impaired Workforce
The double-barreled solution in employing people with mild dementia as healthcare enhancement agents is that we would save on prescription drugs, hospital recovery times, and also be assigning purpose to people with mild cognitive impairment. Folks whose initial downward slope in the aging process is a bit early are not an “unproductive force in the economy.” There is richness of intellect, creativity, and compassion that could be tapped rather than stomped on per our current dementia stigmatization.
There was a time when people with physical disabilities couldn’t get jobs. But we’ve come a long way in learning of the tremendous contribution that the disabled can give, and have accommodated the workplace for such individuals with ramps and wider doorways and elevators in order to reap this benefit. Why not do the same for MCI individuals? Why are we instead discarding this tremendous resource?
In reading blogs of people with early-onset Alzheimer’s, one of the biggest stresses for both the sufferer and the government is issuance of social security disability benefits. Why not offer employment rather than cash benefits? If compassion at the bedside of a sick person dramatically speeds the healing process, think of the savings accrued by employing love & joy-givers in hospitals, clinics, nursing homes?
In his book The Gift of Pain, Dr. Brand lists the factors that enhance pain and prolong the healing process: fear, anger, guilt, loneliness, boredom, helplessness. He then describes how perfectly suited many institutions are in promoting these feelings with their sterile settings, uncommunicative doctors and nurses, boring surroundings (and now that nurses spend all their time at computer terminals per our new streamlining guidelines, these factors are further compounded). Healthcare institutions could cut their costs by employing people to:
Design and paint interesting scenes on hospital ceilings
Play instruments in institutional corridors (not just harps, please!)
Make dolls for nursing home patients
Read aloud to patients, or simply visit
Reupholster institutional furniture with fun fabrics
Take certified dogs into institutions for cheery visits
The savings in dollars would be compounded all around, and the savings in dignity for all healthcare users a welcome change for our society.
So I re-listened to the Fresh Air segment today, then did some quick digging through articles I’ve seen online on the brain, stirred it all around, let it simmer some more, and here is the reduction I got.
Maybe our addiction to the pursuit of happiness is contributing to brain aging. It’s not an umbrella cause, of course. You would never have been able to say that Mom led a hedonistic lifestyle. And Ronald Reagan pursued a lot more things than happiness. But still… The connection between what Dr. Linden was saying and what I’ve read makes me suspicious.
In David Linden’s Compass of Pleasure, he talks about the pleasure area of the brain as being that part that–in response to certain activities or substances–produces dopamine. Dopamine is the “feel good” neurotransmitter in the brain. It is activated when we engage in certain activities or thought processes, but it is also activated when we injest/inject food, alcohol, narcotics.
Some things that produce dopamine are completely healthy. Like a good run, the enjoyment of friends, reading a stimulating book.
Some things are borderline good. Like food. Everybody needs it. The pleasure of good food produces dopamine. But when pleasure is sought after for pleasure’s sake, “the brain’s dopaminergic circuitry gets blunted. In all cases of producing pleasure in the brain, it takes increasing levels [of a thing] to produce the same level of pleasure” (quoting Dr. L). So with food, you eventually get overweightness if the pleasure of food is pursued beyond the body’s need for it. Obesity is contributing to an epidemic of Diabetes, which is strongly linked to brain aging. By indirect means, then, the pursuit of a happy palate can lead to brain aging.
Then there are things that produce dopamine (or cause its production) that are not healthy. Like alcohol, nicotine, cocaine. This falls in with the acetaldehyde hypothesis I wrote about in Does Alzheimer’s Take Guts. Alcohol, cocaine, and especially cigarette smoke have–at some point in their metabolic breakdown–the toxic aldehyde acetaldehyde. Very destructive to the brain. Dopamine is produced as the end-process of breaking down harmful aldehydes into harmless acids. It’s the brain’s “Yahoo!” after saving the day from the bad guys. That “Yahoo!” may be a good thing, but again, in order to get it a second, third, and nth time, you have to increase the attack on the body. [Interestingly, Disulfiram‘s use to treat alcohol and cocaine addiction works by inhibiting ALDH2 (aldehyde dehydrogenase) which is the enzyme that metabolizes acetaldehyde. It lets the toxin do its full work rather than disabling it by metabolizing it into a harmless acid. So the brain does not get its “yahoo!” And if you get no yahoo, you don’t repeat the action.]
The problem with focusing on happiness above all else is that we may end up using the short-cut and more harmful methods of getting that dopamine high.
Dr. Linden’s solution? “Try to take your pleasures broadly: exercise, meditate, learn, have moderate consumption of alcohol, moderate consumption of food.”
I would add: pursue friendships, do charitable work, tend a garden, read a good book (get more ideas at Changing Aging).
As Captain Kirk once said, “There are a million things you can have and a million things you can’t have. Choose the million you can.”
Funny how that commercial for Pristiq antidepressant gets it wrong. The last thing in the world we Alzheimer's victims (on both ends) need is a big old hand winding us up even more! Yikes! A better image would be seeing that key spin in the opposite direction, letting that purple-clad lady relax completely. Now there’s a pill I'd buy!
It’s ads like that that take me back to Princess Bride and Wesley’s pronouncement: "Life is pain, highness! Anyone who tells you otherwise is selling something." A lot of people have to put up with a lot of pain. It's not just us.
So perspective helps some.
Here are some other things that help:
Deep In The Brain is a cerebral self-examination written by a philosophy professor who was riding the top of a success wave when he was diagnosed with Parkinson’s. Talk about the relationship between mind and brain! Here is one who, thanks to his training, steps outside himself to make an objective assessment of his behavior even as he battles the attachment he has to that self.
In this book, Helmut Dubiel analyses his response to the personal and social implications of his Parkinson’s disease. He does not blame or excuse. Rather, he tries to put his and other’s reactions in context of the overarching laws of social interaction.
There is pain in this book. There are lies and pity and anger and judgment. But mostly, there is acceptance of the facts of disease and an acknowledgement of man’s irrepressible will to live and to thrive.
Yesterday as I read this book to Dad, I noticed him fidgeting more than usual. I stopped and asked him what was the matter. He said, “It seems like you’re reading about me.” I explained that this was a philosophy professor writing about himself. Dad calmed back down and listened with interest. Dad doesn’t talk about his inner battles much, so this would logically be painful for him. But good. I think this was one of Professor Dubiel’s hopes–that through his honest self-examination, others would feel released from the need to hide from their disease and, in so doing, find relief.
I’ve often asked people, “Which would you prefer: to lose your body or to lose your mind?” Given that I live with one parent with Alzheimer’s and the other with Parkinson’s, this question has personal weight. In his book, Professor Dubiel clearly expresses his preference for holding onto the self despite the ostracism brought on by the physical distortions of Parkinson’s. Knowing you are being unfairly rejected is still preferable to knowing nothing at all. On the other side, in Still Alice the protagonist affirms this appreciation for the self when–in a lucid moment–she acknowledges “I didn’t meant to get this way. I miss myself.” The mind is a far greater gift than the body.
Of course, in the end, Parkinson’s takes the mind as well.
My take-away? Pray for a cure for both diseases; forgive my and others’ shortcomings; enjoy today.
How much time is enough time? We know we are mortals and we know life is but a breath. In light of eternity, we calculate that 100 years passes as quickly as twenty. Yet, given anything less than 100, and we say we’ve been “cut off.”
My big, strapping brother-in-law lays in the hospital right now, fighting for each new minute after a two-year battle with brain cancer. He is tired, and he is ready to rest. We would prefer the doctors find a cure and make him bounce back, but we want to let him go.
Throughout this whole battle, Ken’s mind worked around his brain to bring humor and gratitude to his situation. He firmly believes God’s purposes can be worked through the worst tragedies, and it is amazing to hear how his concerns were always for the eternal perspective he could bring to the waiting room, the surgery room, the recovery room.
Ken’s life may be cut short in our view, but it has been a life well-lived, and that’s more than a lot folks can say. Socrates said that an unexamined life is not worth living; an anonymous person added that an unlived life is not worth examining. I can vouch for Ken that he’s had a life worth examining.
April 26, a.m.: Ken had a brain hemorrage last night and is on life support. Awaiting a family gathering to let him go.
April 26, 7 p.m. Goodbye Kenny. From someone who was present at his bedside: ” just wanted to write and let you know that Ken’s passing was beautiful in the midst of family and hymns and Scripture. The more that Daniel read and Ruth recited the easier his respirations…and soon he just passed on.”
We already miss your booming laugh, your exhuberant living, and your unwavering faith. Save us a place at the banquet table, and we’ll see you in the morning.
This past week has been a little brutal on my ego. My fictitious self (the me I hold in high regard) has seen its reflection in various external realities and has taken a mortal blow.
At least I hope it has.
You see, I’ve had to acknowledge all in one breath that I’m not as clever as I thought I was; I’m not all that kind or thoughtful of others; my conversation skills have dulled; and my hair isn’t really red (all this self-revelation is partly due to reading Crazy Love—a book that spoons out truth about the self in a cod-liver-oil kind of way: nasty; painful; healing).
I’ve been thinking a lot about my hair in particular, perhaps as a metaphor for all the other traits I have to face up to in myself. My hair—which appears rich and red and full to others—is actually flimsy and almost entirely white. If you look close enough and run your fingers through the root system, the truth is quite apparent: I’m somewhere between grizzly gray and snow white. And as metaphor, I’m thinking it’s time to go white once and for all. It’s time to stop covering up the truth.
Just one thing holds me back: the stigma of white. No, not that elegant, brilliant white, but the mousy salt-and-pepper white. It’s terrifyingly old. I know the difference it would make at the supermarket, at the realtor’s office, at a job interview. I’m young; I should not have to place myself in the old category just yet. Lushious red gives you youth and authority. Mousy gray, and it’s an uphill battle to convince others you can still think. It’s ridiculous that pigment can make the world go ’round, but there you have it.
I know you’re wondering why I’m talking about hair in a blog about dementia, but you’ve probably sensed the connection. Aging has enormous stigma in our culture, and everything in us resists revealing anything that might indicate we are aging. Particularly for those of us who are aging prematurely.
My struggle with hair has atuned me to the struggle in the early-onset Alzheimer’s community. I follow a group on Facebook called Memory People comprised of people of all ages who have been diagnosed with some kind of dementia, their caregivers, and other supporting cast. Some members are open about their dignoses and are brave enough to face public scrutiny; others accept their diagnoses but keep it somewhat private; and still others straddle the cover-up fence: should they reveal something that isn’t fully blown yet but could have as devastating results as if it was? All of them long to live truthfully, but all also know the stigma of dementia and the costs incurred in making their mental status known. As with pigment, we are valued for our synaptic connections. Why would anyone want to expose their deficits and risk rejection?
It makes my stomach turn. What kind of society have we become? When are we going to change the way we value each other? When are we going to free ourselves from the layers of untruth that we spend a lifetime building up? When are we going to trade all our lies in for Truth and finally be set free?
As I was sitting listening to our various conversations around the table, something struck me as different this year. We’re all hovering around 50—give or take a couple years—and the aging process is beginning to take a more prominent seat at the table. Not only do conversation topics start with the premise of aging: declining health, the cost of health insurance, etc, but it seems that no matter what the topic, it eventually touches on something to do with aging.
More on the brain’s default network:
The default network in the brain is considered a “second brain” because it turns on when the rest of the brain is at rest, and turns off when the rest of the brain is at work. Normally, that is. As people age, the default network is less and less capable of shutting down when the mind is concentrating on some difficult cognitive task as it would do in a younger adult’s brain. Since the default network uses 30% more resources than the rest of the brain, you can see how the resources available for cognitively challenging tasks decreases as we age.
In Alzheimer’s, you get the extreme case of this aging effect: the default network doesn’t shut down at all when it’s supposed to (same as in Schizophrenia–which is probably why they use antipsychotic drugs meant for Schizophrenia in Alzheimer’s patients) until that part of the brain eventually dies.
The default network is not very developed in children. It gets more active as we grow into adulthood. That makes me wonder if language is the software that runs the default network. Think about it: the default network is the part of the brain that sorts, categorizes, and edits/deletes memories, and language is the software that sorts, categorizes, and edits/deletes meaning. With language also comes prejudice, and prejudice does not exist in the very young. Also, in Alzheimer’s the default network eventually atrophies, and language ceases (just further argument that the default network is inextricably tied to language).
All of which brings me to the point of this post. Last week there were articles all over the news saying that having more than one language guards you against the worst of Alzheimer’s. Mom spoke four languages and fell prey to Alzheimer’s in her sixties–with no family history of early Alzheimer’s. Dad spoke three
Because it’s Fall and crisp out and a good time to sit down to a good movie, I’m posting one of my favorite suggestions for a movie that deals with Alzheimer’s.
How To Kill Your Neighbor’s Dog is an unfortunate title for a great movie about self-centeredness and the cure for immaturity. The story centers around a playwright with writer’s block who must exit himself in order to find inspiration. Alzheimer’s isn’t the main theme of the movie, but it is present in the background, and the most lucidly-spoken scene in the movie is between the mother-in-law with Alzheimer’s and her brilliant, unhappy son-in-law.
Thought I’d pass it on.
Yesterday I came across Lewis Carroll’s “Jabberwocky” poem in Alice in Wonderland (you can download the whole book for free at Gutenberg).
I’ve always loved how Carroll made nonsense words sound like language. But what got me this time around was Alice’s response, and the parallel of that with how I feel about “talking” to Mom.
‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogoves,
And the mome raths outgrabe.
‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’
- alzheimer's antipsychotics art award body-language book-review cancer caregiving causes coping cues cure death dementia diagnosis diet Dimebon disabilities drugs early-onset ego end-stages fear gadgets gut heredity humor images language lifestyle metabolism movies music parkinson's phenotype prevention progression research seniors slideshow stigma stress symptoms validation violence
- tiago: In researching the human gut over the last few wee...
- Deborah: I wanted to speak to John more about his father's ...
- Chip Allen: Enjoyed your article about Khan Academy. I had a m...
- EHOB Inc: Hopefully other caregivers find some relief and hu...
- Kim: Oh Marty, that made my day. Thanks for posting it!...
- "Where to, Bud?" Early Onset Alzheimer's Blog - A thoughtful blog by a man with early onset Alzheimer’s
- Alzheimer's Reading Room - In it for the long run with Dotty
- Alzheimer's Research Forum - Targeting Breakthrough Research
- Annals of Neurology - Latest studies in neurology
- Changing Aging by Dr. Bill Thomas
- How to Live a Longer Life - Nutrition ideas and secrets on increasing longevity
- Journal of Alzheimer's Disease - an international multidisciplinary journal with a mission to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behavior, treatment and psychology of Alzheimer’s
- Kris Bakowski's Blog on Early-Onset Alzheimer's - Kris is an active advocate for Alzheimer’s research
- Posit Science Blog - mind science
- The Dopamine Diaries - Lucid reflections on Dementia Care and Aging Well
- The Hope of Alzheimer's - Mary Kay Baum and sisters with early-onset speak out
- The Last of His Mind - Joe Thorndike, once the managing editor of Life and the founder of American Heritage and Horizon magazines, succumbs to Alzheimer’s
- The Myth of Alzheimer's - A doctor’s perspective on Alzheimer’s
- The Tangled Neuron - A Layperson Reports on Memory Loss, Alzheimer’s & Dementia
- The Brain’s Springboard to Creativity
- Citizen Science: Help Shed Light on the Brain-Gut Connection
- Getting Old With a Sense of Humor
- Living With The Jabberwocky
- Free Academy for The Aging Brain
- Water and The Aging Brain
- Best of the Web Nomination
- Bexarotene: Hope, Hype, Hooold It!
- Guest Post: I Wish I Knew Then What I Know Now
- The Brain: Divided We Conquer
- We are All Snowmen
- Does the Pursuit of Happiness Lead to Brain Aging?
- The Compulsion to Label
- The Myth of Alzheimer’s: Book Review