All my life I considered myself an introvert, a private person, ungifted in the art of validating people. In my early forties (a couple minutes ago), I bought a small restaurant, and all this changed. I grew by leaps and bounds in my fascination with people of all stripes and in my ability to dig […]
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.
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
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]
In my research on Alzheimer’s and glucose metabolism, I ran across a fascinating article about the brain’s default system–that part of the brain that is affected in Alzheimer’s Disease; that part of the brain that hogs glucose like no other part of the brain.
In The Secret Life of the Brain, Douglas Fox brings together research on the default network beginning with Dr. Sokoloff who, in his attempt to find out why the brain uses so much glucose (20% of the body’s supply), discovered that the brain uses as much energy while “at rest” as it does while performing tasks.
Later, a neuroscientist named Marcus Reichle discovered a kind of “brain within the brain” that works its butt off when it’s supposedly in “idle mode.”
Raichle and Shulman published a paper in 2001 suggesting that they had stumbled onto a previously unrecognised “default mode” – a sort of internal game of solitaire which the brain turns to when unoccupied and sets aside when called on to do something else. This brain activity occurred largely in a cluster of regions arching through the midline of the brain, from front to back, which Raichle and Shulman dubbed the default network (Proceedings of the National Academy of Sciences, vol 98, p 676).
It was found that some parts of this network devoured 30 per cent more calories, gram for gram, than nearly any other area of the brain. Since part of this default system is in constant communication with the hippocampus (which records every day memories), Reichler speculated that its function was to sort, evaluate, and categorize memories in such a way that would allow the brain to use the past as an “inner rehearsal” for considering future actions and choices.
Brilliant. Just when you think daydreaming is a waste of time, it turns out it’s crucial for living.
Raichle now believes that the default network is involved, selectively storing and updating memories based on their importance from a personal perspective – whether they’re good, threatening, emotionally painful, and so on. To prevent a backlog of unstored memories building up, the network returns to its duties whenever it can.
In support of this idea, Raichle points out that the default network constantly chatters with the hippocampus. It also devours huge amounts of glucose, way out of proportion to the amount of oxygen it uses. Raichle believes that rather than burning this extra glucose for energy it uses it as a raw material for making the amino acids and neurotransmitters it needs to build and maintain synapses, the very stuff of memory. “It’s in those connections where most of the cost of running the brain is,” says Raichle.
Reichler later attented a lecture by an Alzheimer’s specialist and was shown a map of beta amyloid plaques (those clumps found in Alzheimer’s autopsies) in the brain. The picture looked exactly like the default network!
Raichle, Greicius and Buckner have since found that the default network’s pattern of activity is disrupted in patients with Alzheimer’s disease. They have also begun to monitor default network activity in people with mild memory problems to see if they can learn to predict who will go on to develop Alzheimer’s. Half of people with memory problems go on to develop the disease, but which half? “Can we use what we’ve learned to provide insight into who’s at risk for Alzheimer’s?” says Buckner.
That got me thinking…
Maybe one reason we lose memories is that our lifestyle doesn’t allow for much rich idle time like when we would sit on the porch sipping sweet tea on a hot afternoon. So the default network can never do its work of sorting and categorizing memories, and consequently we lose them.
And if this is a problem with the present generation, how much moreso for the upcoming generation. We are consumed with having something to pay attention to all the time. Just look at TV screens these days: not only do you have the main screen, but there’s the pop-up ad for the “next show,” a caption for what’s going on on the screen, and a ticker at the bottom of the screen for what’s happening elsewhere.
Maybe part of the solution for AD is the “quiet space” to be incorporated in school, at work, and at home. Hmm, come to think of it, I offered this very solution in a comment to an article in Time Magazine back in 09 (Turn Off, Tune In, Log Out):
I predict that the twitterification of our society is going to lead to an exponential increase in early-onset Alzheimer’s. We’re increasing the rate of input to our brains and decreasing the time for processing information, and our brains are going to revolt. That, in turn, will lead to the next big industry: de-twitterification rooms where you can sit alone and unconnected, with nothing but a giant aquarium and a beanbag. -Marty
On the way back from the errand, I was no longer me but a dim-witten twenty-something boy, and the SUV was now a semi truck. I climbed into the truck and found that it was in such a tight spot that it would be nearly impossible to get the monster out and down the alley onto the street. Nevertheless, I managed.
From there on, driving home was a brink-of-disaster experience. Sometimes the truck would jacknife and tilt over and I would dangle from the window and the truck would almost fall on top of me. But it would always right itself just in time to not kill me.
I kind of lost my way home, and at one point drove the truck into a military building. Somehow the folks there mistook me for a war hero and ordered a police escort to get me home. I was too dim-witted to correct them.
I drove home never quite feeling in control, yet chortling the whole way—the cops behind me scratching their heads as they swerved to follow. I arrived home and STILL no one would act on the fact that I was not OK.
When I awoke this morning I had to laugh at my mind’s lack of subtlety. That definitely sums up life right now. This caregiving business feels like you are always on the cusp of something that could kill but ends up leaving you alive. Barely.
I especially got a kick out of the war hero thing—a commentary on everyone always saying “You two sure are wonderful. You are going to get huge rewards in Heaven!”Merrily merrily merrily merrily
Life is but a dream.
Another thing I got from Oliver Sacks’ book was a new notion of the power of music in dealing with dementia. My previous post on music and Alzheimer’s dealt exclusively with the notion of music as a memory stimulant. But Sacks’ book made me realize that music can be used as a tool to organize thought and action in the present—in the midst of neurological damage.
Yesterday as I lay down for a recuperative nap, I listened to a Scarlatti sonata in the background, and immediately got a visual sense of what goes on in the brain when music is played. The first picture that came to mind was an animation of DNA transcription: that funny little zipper head that makes a perfect copy of your DNA as it unzips the double helix. Nibble, nibble, nibble, copy, copy, copy. Then I saw Scarlatti’s sonata as doing the opposite with my thoughts: grabbing all the randomness in my mind and knitting it into a useful strand, or, if you want to be more esoteric, turning it into functional narrative.
In Sacks’ The Man Who Mistook His Wife for a Hat, the first clinical case is of a man who had lost all “sense of familiarity:” he could not recognize faces, body parts, food, clothing. Sacks wondered how the man (also a music professor) could function with this neurological deficit, so he went to visit him in his own home. It turned out the man had a very musical brain, and he functioned by humming a tune as he went about his daily business. He could eat as long as he sang, but if interrupted, would no longer recognize his food and would stop eating. He could dress by the same means. His wife would set out his clothes for the day, and he would only recognize them as clothes and dress himself once he started singing! His musical brain was compensating for his lost sense of recognition.
And now I remember a funny little entry by Bob Demarco on the Alzheimer’s Reading Room that is seriously brilliant. He talks about using music to stimulate his mother into action:
My sister was shocked when I told her on the phone that I finally “convinced” my mother to drink prune juice after years of trying and failure. Joanne was here and saw my mother refusing to drink and calling the prune juice poison. It was only after I introduced the “prune juice song” that my mother starting drinking the juice every day and the dreaded Poop-E problem was solved.
I also have the pee song, the poop song, and a long list of songs soon to be number one hits.
This is exactly what Oliver Sacks would have recommended! Music and Alzheimer’s (and Parkinson’s and most other dementias): stimulating the mind into action.
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?
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.”
Yesterday I asked my sister—who is visiting from abroad—what signs of Alzheimer’s she sees in herself. She rattled off some memory problems such as forgetting names of acquaintances or not being able to place someone’s face when out of context. Nothing particularly Alzheimersy, just decreased mental sharpness.
She then asked me if I was experiencing any unusual mental hyperabilities and went on to explain how she seems to have gained a fantastic ability to call up words she didn’t even know she knew.
Funny, I told her. I had this post saved as a draft when she asked me the question. The answer is yes, I’m experiencing this very same thing, and am curious to know if there is a name for it.
Is there such a thing as hyperphasia—the flip side of aphasia? The term hyperphasia exists, and it’s defined as an uncontrolled impulse to talk. But that’s not what I’m referring to. I’m referring to the mind’s sudden ability to pull up obscure words when common words won’t present themselves. Words so obscure that we had no idea we knew them.
I’m well acquainted with aphasia—the “tip of the tongue but it just won’t come” nature of language loss. I’m also familiar with another embarrassing result of gradual mental decline: the mind’s tendency to call up words similar in shape, but wholly different in meaning from the one the user wants. Try Googling “fairy schedule” next time you want to cross the Puget Sound to see what I mean.
But what is it called when the mind calls up unknown words that perfectly fit the context they were intended for? Does neurology study mental surfeits as well as deficits?
I told my sister that I’ve had arguments in my head over this new ability. One night, for example, I went to bed, and as I lay my head on the pillow a picture of our living room doorway came to mind, and with it the word “transom.” I immediately questioned myself:
“Transom? What’s that?”
“It’s the big piece that spans the top of the doorway, dummy.”
“How’d you know that?”
“I don’t know. I just know that it is.”
“You’re probably thinking of Hansom. And I think that’s a horse carriage, not a doorway.”
“No, I know hansom is a carriage. Transom is the door thingy.”
With that, I got out of bed and looked the word up in the dictionary: a horizontal crossbar in a window, over a door, or between a door and a window or fanlight above it
“OK, you were right.”
My sister laughed and said, yes, that’s exactly what goes through her brain.
So my question is, what is this newly acquired hyper-phasia called? And is it common to everyone as their minds begin to deteriorate?
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.
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 of all that hopeless progression with a little taste of surprising regression.
I wrote the rest of this post a week ago, but only got around to publishing it today:
Mom is going backwards. She’s regressing, it seems to us, and that’s a good thing when you have Alzheimer’s.
How? What? When? Where? Why? Is it wishful thinking that we’re seeing marked improvement in Mom’s cognition, or is this real?
Exactly what I’m asking myself these days. Granted, being a highly motivated observer may make my observations suspect, but I feel it would be irresponsible not to report what appears to be clear evidence of improvement in Mom’s condition. It would be irresponsible of you not to suspect my findings, but dumb not to take a look at all.
So here goes.
A few weeks ago, we who have been taking care of (or been around) Mom for the past three years noticed that we were telling people Mom was having a good month. We were used to telling people that Mom was “having a good day” every now and then. A good day once a week was a good thing. But the entire month of March of this year seemed to be “a good day.” It came to the point that we were scratching our heads saying, “Hmm. Maybe Mom doesn’t have Alzheimer’s. Maybe this was all stress, and now that she’s been de-stressed for three years, she’s coming back.”
So I decided to take inventory of the new signs of cognition (and physical improvement) coming from Mom these days. What exactly is she doing that she wasn’t doing before? This is what I have:
- Mom has gained weight. Exactly a year ago Mom weighed 85 pounds and was bed-ridden with pneumonia. Hospice pronounced her a week from the grave. Today Mom weighs 95.5 pounds. No sign of physical sickness (OK, an occasional night fever and drippy nose).
- Mom sucks from a straw. For the longest time, we were having to “prime the pump” to get Mom to suck from a straw. A year ago, when we put a straw in her mouth, nothing would happen. So we’d plug the straw with our finger, then release the contents into her mouth, and, voila, she’d start sucking. Now Mom sucks as soon as the straw hits her lips.
- Mom opens her mouth at the sight of food. Again, for the longest time we’d just get a pleasant stare when we lifted a fork to her mouth. Two years ago, it would take us a good hour and a half to get through breakfast because it was only one time out of ten that Mom’s lips would part when we brought food to her mouth. Now, six-seven times out of ten, her mouth opens like a baby bird’s. Breakfast time has been cut in half.
- Mom swallows. Up until (this is where I wish I’d kept an exact diary) about four months ago, Mom had a permanent sore on the right side of her mouth. This was caused by the fact that Mom leans to the right when she sleeps, and food that remained in her mouth (because she wasn’t aware enough to swallow) dribbled out and ate at her skin. No matter how well we brushed her teeth and how much Vaseline we slathered around her lips, the sore was there off and on for the last three years until–a few months ago. The sore has not returned.
- Mom watches TV now. Meaning, she actually turns to it, focuses on it, and laughs on cue–sometimes for a 10-15 minute stretch. This hasn’t happened at all in the past three years until this “awakening.”
- Mom stops at the photo gallery in the hallway, looks at individual family photos and “comments.” For the past three years we’ve been walking through the hallway with Mom–past a 4 foot x 4 foot photo gallery–occasionally stopping to show Mom the family photos in hopes of getting a response. She wouldn’t even look where we were pointing. And if she focused at all, it would just as likely be on a knot in the wood frame as on a photo. Now Mom takes the initiative to stop and look from frame to frame, pointing, jabbering, looking at us and back at the photos. Sometimes getting teary-eyed at our description of the photos.
- Mom is using sentences. I wrote in a previous post that Mom’s language consists almost entirely of two syllable experiments in sound with an occasional word thrown in. We used to get so excited when she uttered a word that we’d call a family member and share the big news. In the past couple weeks, Mom has used short sentences. Like three days ago when I put her to bed, I said, “Mom, I love you.” She nodded and said, “For me, for me, for me too too.” The next morning at breakfast I tried to give her some juice while she was still chewing on her eggs and she shoved my hand aside and said “Put it down down.” I put her down for a nap in the afternoon, put on some Vivaldi, and did a farcical ballet dance (a la BodyVox). She nodded and said, “Yes. I do too too too.” Then that evening when I tried to give her her Seroquel (ground up in some juice), she shook her head. I kept bringing the juice to her mouth, and in exasperation she said, “Tsk! What what what do you do?” (Translation, “cut it out!”).
Four sentences in two days! Yesterday was a quiet day for Mom. No miraculous signs of anything. I’m dying to report more on this healing process, but Mom is not a science project, and I have to remember that she is worth all my love no matter what direction her mind and body take.
But I do think it’s worth mentioning that something has happened to Mom that has sent this Alzheimer’s into some sort of retreat. There is more than death taking place in her brain. Somewhere, somehow, regeneration is taking place as well.
Have any of you had the experience of watching a loved one with Alzheimer’s have a good month? I know Bob DeMarco recently reported an extraordinary event with his mother Dotty. Huge “regressive” step.
Next question will be, what could be causing these amazing regressions? We may have to rely on each other–the caregivers–to find the answer rather than on lab tests alone.
Yesterday Bloomberg Businessweek published an article titled Mouse Study Suggests Alzheimer’s-Linked Protein Can Migrate Into Brain.
The story is this: researchers took brain matter from mice that had beta amyloid plaque (were genetically modified to have such plaque), injected it into the stomachs of normal mice, and months later found beta amyloid plaque in the brains of the normal mice.
If all you read is the headline of this story, the conclusion is that the beta amyloid from the sick mice got into the bloodstream of the healthy mice and passed through the blood brain barrier to take up residence in the healthy brains.
But if you read to the end of this article, it is suggested that there could be all kinds of reasons the healthy mice ended up with beta amyloid plaque in their brains, such as maybe there is some chemical in the plaque brain sample that passes through the blood brain barrier and causes a chain reaction that produces beta amyloid plaque—which would negate the headline altogether.
Now, watch the news and see how many people with take only the headline of this story and pass it off as scientific fact.
The moral of the story: be careful what you read and how you read it.
AC6BTV7AQCKPToday I stopped at a light and to my right was a truck hauling what looked like a small, complete house all wrapped in white plastic. I wonder if it was one of these “Granny Pods” that are becoming a hit all over the country. I don’t know what people are bellyaching about. I think these are a great idea! It would be like playing house and you wouldn’t have to put up with any teenagers blaring music from their room as you would if you lived in the real house. Think I’ll order one with a Japanese soaking tub when I get around to needing one.
If you click on the picture at left, you'll hear the loveliest little story about a nursing home in Germany that decided to install a fake bus stop in front of their facility for patients to go to and "de-stress." Folks would go out to the bus stop thinking they'd get on a bus and go home. But after a few minutes of waiting, they'd forget why they were there and go back inside, no longer agitated and afraid.
So, if lying achieves a good end, is it OK?
Looking at it another way, is the aim of interaction to be correct or to be kind?
In the bus stop story, think about what it is the patient really wants when he waits for the bus. He wants home and family. But why? He wants these things because they mean acceptance and love.
So if the bus stop allows a patient to calm down enough for a staff member to have a soothing, friendly visit with them, is it not giving them what they were after in the first place? And is this not Truth?
This is the same rationale for communicating with Alzheimer's patients even when they are home with family. The point isn’t to constantly correct your loved one ("no, it’s not morning, it’s evening;" or, "no, my name isn’t Mary, it’s Marty"). We’re not here to elicit factual correctness from each other, but to honor each other as full-fledged beings created in the image of God—regardless to what extent we are broken.
And, no, I'm not a post-modernist saying there are no facts, or that facts are what we want them to be.
Just saying, facts aren't the point. Love is.
I just finished reading Peter Whitehouse and Daniel George’s book The Myth of Alzheimer’s.
How dare you! you want to say when you first see the title. My mother went through hell with this disease, and you’re saying it’s all imaginary? HOW DARE YOU!
Then you read the book and understand.
I’m not sure I agree with the entire revision of the story of Alzheimer’s, but I did like the tenor of the book. It’s compassionate toward those who suffer from dementia and even more so toward those who suffer from the stigma of dementia. It is angry at Big Pharma—the machine that markets fear of dementia so they can sell their mostly ineffective drugs. And it is angry at the medical establishment that succumbs to that marketing—toward doctors who accept gifts (in disguise) in exchange for prescribing Big Pharma drugs to their patients.
Dr. Whitehouse stresses that he was one of the cogs in that machine. His research helped write the story of Alzheimer’s as a disease, and his advice was sought after by pharmaceutical companies as they worked to develop drugs like Aricept and Namenda.
He was part of the machine until he realized he had helped create a monster that now feeds on the stigma of dementia such that no one is allowed to age with dignity if aging includes any level of dementia. The stigma of dementia has been blown up so large that anyone with a tinge of it is considered finished. People are no longer a mixed bag of assets and deficits. Once a person’s memory starts to go, he has no value unless the “deficit” is “fixed.”
Dr. Whitehouse points out instead that even with cognitive deficits, human beings still have plenty of assets to draw from in living fully satisfying lives.
So what is the myth?
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