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. …read more
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!’
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. …read more
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.
The first thing you have to know about Mom is that she is the biggest sweetheart on the planet. She has always said “yes” to anyone who asked her for a favor or a meal or a ride or even cash. We used to berate her over some of these decisions. “Mom, you’re just enabling them to go get drunk,” or whatever. We’d rather keep our boundaries intact. Keep safe. Not Mom. She’d rather “do onto others” as Jesus wanted her to do–and let Jesus take care of punishment if the recipient abused the gift.
With that in mind, it puzzles me that these days, the word most frequently pulled out of her tiny residual vocabulary (5-10 words at present) is the word “no.”
“Mom, shall we get up?”
“Mom, isn’t this music pretty?”
“Do you want to go for a walk?”
Here’s the curious part. Her body language still says “yes.” So why the verbal “no”?
I’m thinking that this knee-jerk negation is her last recourse to individuality. Having lost most of what makes her a person, she is resorting to negation as a way to distinguish herself from others.
Think about it. “Yes” blends us into other people. It’s a unifying word. It accepts. It serves. It hugs and becomes one with the other.
“No” on the other hand, puts up a wall between the self and the other. It says, I am me and you are you and it’s going to stop there.
It’s Mom’s only way, I believe, to retain a feeling of self.
And that revelation changes how I look at the world. You wonder why some people just can’t play nice in the world arena; why they have to say “no” to constructive engagement; why they have to strap bombs around themselves and “no” themselves and other people into oblivion.
Perhaps it’s because those people feel that a “yes” will blend them into the will of the other–a will that is unacceptable to their idea of a healthy self. A “no,” they feel, is the only way they’ll be seen.
Do you see what I’m saying? The ego’s boundaries collapse under yes. “No” is the last bastion of the tormented ego.
Rose Lamatt recently sent me her book Just a Word: Friends Encounter Alzheimer’s—the true account of her best friend’s rapid decline after being diagnosed with Alzheimer’s, and of the author’s life as a caregiver. After reading (or should I say “crying”) my way through this book, I decided I had to recommend it to all my readers as well.
I read and liked Still Alice, but it doesn’t hold a candle to Just a Word when it comes to describing the wretchedness of Alzheimer’s and of caregiving and of life in a nursing home after home-based caregiving is no longer an option. Just a Word may not be as polished a work as Still Alice (my editor’s eyes kept making corrections until the story sucked me in), but this book will give you the real thing: Alzheimer’s with poop and bruises and the constant anguish of those trying to love and care for its victims (unlike the sanitized version in Still Alice).
In all my reading on Alzheimer’s, I have not found anything so powerful as this book to stir a desire to rid this disease from the face of the earth!
Here’s a short section of a CNN interview of Michael J Fox done by Sanjay Gupta—about living with Parkinson’s:
“Liberating” is what Michael calls his Parkinson’s! A chance to do something significant with his life! The turning point? The diagnosis. The act of giving a name to his symptoms allowed him to take back control of his life. Wow!
I cried throughout, of course, because Dad’s Parkinson’s was nothing liberating. But the reason it was such a cage, I think, is that it went undiagnosed until the very end. His shaking was written off as “familial tremors” (like his father and brothers who likewise had hand tremors without Parkinson’s) for twenty years, so all his other symptoms—an expressionless face, shuffling gait, forward tilt, drooling, even dementia—weren’t blamed on a disease: Dad had to take the blame himself.
I’m sorry, Daddy. How freeing it would have been to know your body was beyond your control. I think it would have helped your mind to gain control over your brain.
I hope this will convince anyone out there who suspects they may have Parkinson’s to get a thorough neurological examination. Take control of your disease and don’t let it eat up the rest of your life.
This weekend I picked up and devoured Dr. Oliver Sacks’ The Man Who Mistook His Wife for a Hat—a fascinating collection of clinical tales of neurological aberrations accompanied by philosophical and social observations regarding the people affected by these aberrations.
One of the first things that hit me as I read these tales was remorse over my inadequate caregiving of Dad in the past three years. I mean, the very first case in the book reminded me very much of Dad—his inability to tell the difference between his foot and his shoe; to interpret a picture or the furniture layout of any room; to distinguish between his body and a chair across the room. But whereas Dr. Sacks’ response to these aberrations was fascination, interest, and kindness, mine was a struggle against exasperation, irritability, and impatience.
Why couldn’t I marvel at (instead shake my head at) Dad’s description of his back pain as an imaginary horizontal tube about a foot in front of his abdomen? Why did I only nod in shame when doctors asked, “Is your father’s mentation… always… this… shot?” instead of pushing the observation beyond the superficial to the interesting? If I’d only read this book or studied neurology before taking care of Dad! I feel like a parent looking back on her inadequate parenting skills and feeling remorse over the damage it may have caused.
Dr. Sacks laments the tendency of neurology to focus on “deficits,” leaving the soul out of the doctor’s concern. This echoed my own feelings expressed in the post Regarding Disabilities and Questionnaires. We are so concerned in medicine and social services to define what’s wrong with the patient that we miss seeing the desperate starvation in front of our eyes: the individual’s need for affirmation—for having someone notice what’s right with them. Thus, the simplest of all medicines or disability benefits is left completely out of the picture in professional delineation of care: making use of what’s left of the damaged self to make positive human connections.
From his chapter, “The President’s Speech,” I learned one way to use what’s left of Mom’s mind to connect more effectively with her. Like the patients in the aphasiac ward, Mom too has lost all language while retaining extraordinary function in the area of intonation, body language, inflection, and facial expression. I’ve always sensed that she could “read our body language.” Dr. Sacks’ confirmation of this ability has made me more aware of how I use those meta-verbal cues in communicating with Mom. The smile I get in response is more valuable than any drug-induced ability to tell what date it is.
One of the most fascinating passages in Dr. Sack’s book tells of a man with Tourett’s who, when given Haldol in the smallest of doses, ceased to exhibit the excesses of Tourett’s and became disastrously dulled—both physically and mentally—causing him as much distress as had his Tourett’s dysfunction. It took three months of counseling and “preparation for healing” before the man was again willing to try a tiny dose of Haldol. As Dr. Sacks put it, “The effects of Haldol here were miraculous—but only became so when a miracle was allowed.” Scandalous! Was Dr. Sacks milking the placebo effect for all its worth? I’ve always wondered why doctors don’t deliberately incorporate the placebo effect into the real medication to multiply its effect. Now I know: some do (what’s wrong with spending three months preparing a patient for healing?).
It’s easy to see why Dr. Sacks is considered an exentric. His methods go beyond the cut and dry. They touch the soul. I think I like this.
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.”
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.
The following describes the knowledge gained by Sharlene in the course of caring for both her parents with Alzheimer’s. It is not necessarily a reflection of my views, but I thought it good to publish the research of someone who has an insider’s view of Alzheimer’s dementia.
Sharlene Spalding is a naturopathic consultant in the village of Casco, ME. She is a former primary caregiver for two parents with AD. She holds a master’s degree in natural wellness. Sharlene is an excellent resource in natural healing and a hound dog when it comes to research. Because of what she knows now, she is committed to a pharmaceutical-free home that revolves around organic foods and herbs. You can visit her website at The Village Naturopath.
Eleanor Cooney’s Death in Slow Motion: a Memoir of a Daughter, Her Mother, and the Beast Called Alzheimer’s is not just one book. This is two tales in one: a memoir of desperate caregiving and a biography. The memoir part follows Eleanor’s hyperventilated, drug and alcohol-sustained trek through the five stages of Alzheimer’s caregiving for her mother, Mary Durant, and the biography chapters relate the story of her mother prior to Alzheimer’s (think Dorothy Parker with abundant sex and alcohol) ending with a very rare love story between Mary Durant and Michael Harwood (her third husband). Having the story weave through these two windows makes the reader feel the compounded tragedy of the beast called Alzheimer’s.
You will laugh, clench, oggle, envy, and cry as you read this literary gem.
As a bonus, Cooney includes a previously unpublished short story written by her mother (in a style I would call Flannery O’Connor cum wicked smirk).
Buy it. Read it. Pass it on.
P.S. People who read this book will probably also buy and read Mary Durant and Michael Harwood’s On the Road with John James Audubon. Mine is already in the mail.
Trying to follow Alzheimer’s research sometimes feels like walking through an Escher exhibit: the contradictions can border on the absurd.
Take the new findings on SIRT1 and its relation to Alzheimer’s. Research after research shows that SIRT1 apparently protects against Alzheimer’s:
25 July 2010. The sirtuin protein SIRT1 is emerging as an important player in learning and memory, and may have potential as a therapeutic target in Alzheimer disease. Fresh on the heels of a July 11 Nature paper that demonstrated a crucial role for SIRT1 in memory (see ARF related news story on Gao et al., 2010), two new papers add to the growing body of evidence that SIRT1 helps keep brains healthy. In a paper appearing July 21 in the Journal of Neuroscience, researchers led by Valter Longo at the University of Southern California, Los Angeles, show that a SIRT1 knockout mouse has numerous defects in learning and memory. This finding implies that SIRT1 could have a protective role in AD, and indeed, in a July 23 Cell paper, researchers led by Leonard Guarente at the Massachusetts Institute of Technology, Cambridge, report that overexpression of SIRT1 can decrease Aβ production and the number of amyloid plaques in a mouse model of AD.
You’d think, then, that more SIRT1 is better for Alzheimer’s and less is worse. But:
Michán and colleagues also examined a transgenic mouse that overexpressed SIRT1 16-fold in the brain. On this normal mouse background, the authors found that this massive SIRT1 overexpression conferred no improvements in learning or memory, and that synaptic function was unchanged except for a slight increase in neuronal excitability.
And though less is worse, vitamin B3 in the form of niacinamide has been shown to “cure” Alzheimer’s in mice by decreasing the expression of SIRT1: Nicotinamide Restores Cognition in Alzheimer’s Disease Transgenic Mice via a Mechanism Involving Sirtuin Inhibition and Selective Reduction of Thr231-PhosphotauWe evaluated the efficacy of nicotinamide, a competitive inhibitor of the sirtuins or class III NAD+-dependent HDACs in 3xTg-AD mice, and found that it restored cognitive deficits associated with pathology. Nicotinamide selectively reduces a specific phospho-species of tau (Thr231) that is associated with microtubule depolymerization, in a manner similar to inhibition of SirT1. Nicotinamide also dramatically increased acetylated -tubulin, a primary substrate of SirT2, and MAP2c, both of which are linked to increased microtubule stability. .
When asked about this contradiction, Dr. Greene, one of the researchers on this paper says,
You are correct – there are contradictions between the role of Sirt1 in AD. Regardless of these, nicotinamide has good effects in the preclinical models, and has been shown to now be effective for other neurodegenerative diseases as well. Sirt1 may be beneficial at some stages of the disease, and not others – we cannot [reconcile] these differences at this stage, but our research says that nicotinamide is highly effective in preclinical models and that inhibition of Sirt1 plays a role in these effects.
My mind wants to hyperventilate with the contradictions, but then I remember the story of the three blind men describing an elephant and realize the contradiction exists only because we do not yet fully understand.
And that’s what drives research onward.
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.
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?
My last post on niacinamide and Alzheimer’s (it’s supposed to reverse Alzheimer’s de-mentiaThe Coenzyme nicotinamide adenine dinucleotide (NADH) has been used as medication in 17 patients suffering from de-mentia of the Alzheimer type in an open label trial. In all patients evaluated so far, an improvement in their cognitive dysfunction was observed. Based on the minimental state examination, the minimum improvement was 6 points and the maximum improvement 14 points with a mean value of 8.35 points. The improvement on the basis of the global deterioration scale (GDS) was a minimum of 1 point and a maximum of 2 points with a mean value of 1.82. The duration of therapy was between 8 and 12 weeks. No side effects or adverse effects have been reported from the patients or their caregivers during the observation period which is, in some patients, more than a year. This open label trial represents a pilot study from which no definitive conclusion can be drawn. A double-blind placebo controlled study is necessary
So, the music itself was great. Plus, Greg was a gem of an entertainer, weaving funny little stories throughout his performance, making us laugh and shout out responses. Very audience-attentive.
Which brings me to the point of this post.
See, when Greg first came out on the stage, he sat in front of a rickety old pump organ that was set up next to his keyboard (just two of about sixty eight instruments he played that night). And he told us the story of how he went out to buy a computer that day and ended up buying this antique organ instead. A 1911 organ to be precise.
Now, the whole time he was relating his organ-acquisition saga, I was thinking of Mom, because this was the exact kind of organ that Mom played in church down in Brazil for many years. And I was picturing Sunday afternoons when Mom would fold up the organ (or have one of us kids do it), hoist it into the van and drive it to one of the favelas around town for a Bible club. I pictured snotty little kids running to the van, touching the organ as it was set up, and singing their lungs out at the sound of Mom’s squeaky playing.
At the end of his story, Greg paused, looked at the organ, and said, “I’ll have to name her.”
Well. It didn’t take two seconds for me to think of the perfect name for that organ. So I shouted out “Ruth!”
And it didn’t take Greg two seconds to feel it in his bones that the name fit. He chuckled, muttered something about my timid voice (I thought I’d shouted), and agreed that the organ should be named Ruth.
It made my day. Made my niece’s day, cuz now her Greg Laswell has an organ named after her grandmother (hmm. Is there any good way to reword that sentence?).
But this story means even more to me for the irony in it. You see, Greg sings a lot about trying to forget. Trying to forget a love. Trying to forget the pain of a lost love. And here he is now, lugging around a little pump organ whose namesake–Ruth–wants more than anything else in the world to remember. Too weird. One is cursed by memory, the other by the loss of it.
Anyway. I have to thank Greg for a fun night that will only grow in significance as I retell this story.
And you have to keep an eye out for Greg. In case, you know, he turns out to be somebody. Like Ruth.
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