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
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:
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 beneath the surface and find the gold within. I grew in my ability to remember names, know faces, discover connections, and find new ways to validate people. I got high on it—on my ability to validate. It validated me in return.
Then one day this abruptly ended. I crashed. I had been working seven-day weeks for two and a half years, and my body and mind couldn’t take it anymore. The first scary sign of stress was when some of the music I played every day at the cafe lost its familiarity. I was evidently unable to learn new music. Then it was faces. New ones wouldn’t stick, and old but infrequent ones were a struggle to recall. I was filled with doubt when in conversation: what had we talked about the previous time? Did they just come from Europe, or were they going to Europe? I couldn’t remember.
Stress fried my brain, and my validation skills went with it. Nothing, but nothing hurt as much as having a newly-made friend appear and me not know who they were for ten or twenty seconds. The eager look on their face faded instantly, and nothing could bring it back. No amount of remembering in a few seconds would make up for my initial inability to validate them. I died a little bit every time it happened.
I wanted to resign from life. Retreat. Embrace my pre-cafe, introverted self. I wanted to be given a chance to explain (there is no such thing). I cried, prayed angrily, tried to bargain with God.
How do you love people when the principal organ of love—the brain—is shot?
I realized eventually that I was mourning my ego, not my lost ability to validate people—because I hadn’t lost the ability. I’d only lost the ability to do so in a way that would make me look good. There were and are plenty of opportunities to extend kindness and touch people’s souls even if we can’t immediately recall a face. It just takes an awful lot of something to give up the craving for reciprocity.This also showed me that validating was not my natural gift. To meet someone for whom it is, you must meet Jan Petersen. This afternoon I watched the video Jan’s Story: Love and Early-Onset Alzheimer’s again and re-discovered a true hero. Even with severe dementia, Jan knows how to seize each day and touch each person she meets. Jan’s is both a heart-wrenching and heart-warming story. Many people go through life mentally intact yet unable to see the goodness that surrounds them. Then you meet someone like Jan whose indomitable spirit sheds significance on everything and everyone she sees—regardless of her inability to name things.
The validation breakdown begins with us who think Jan’s story is nothing but a tragedy. But I tell you, if I could pick one trait to take with me on the dark road into oblivion, I’d pick Jan’s ability to validate without requirement; to love without strings attached; to milk each moment and each encounter.
That is the validation breakthrough!
Here are four more of my current heros—people with early onset Alzheimer’s who put themselves in the crosshairs of the stigma-tazers so they can help the rest of us see a little bit of the road ahead:
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.
On Saturday, August 21, 2010, God took Dad home. God did not wait until we were ready for this. He waited until Heaven couldn’t stand Dad’s absence any longer.
I’m posting this video about how we deal with death in our current culture because I think our attitude of denial in the face of death needs to change. Considering my family’s immediate reaction of trying to revive Dad–even though he requested a DNR–I’m speaking from experience. Our natural tendency is to hold on as long as possible. But this isn’t necessarily the best for those we love.
Letting go is so stinking hard!!
All the more reason to think and plan ahead for the death of those you love.
The other day my sister saw a note I had written on a sticky pad. It was a list of things I needed to do, one of them being to order a refill of Mom’s Seroquel. Except my sister read “Mom’s sequel” and thought I had written a book about Mom and was now working on a sequel. Not a far-fetched idea, as I’m always writing some book or other under the covers with a flashlight (so to speak).
Turns out I’m not writing a sequel about Mom.
Unless I’m writing it with my life.
In my last post I expressed fear that I might be following in my mother’s footsteps. Who wants to inherit Alzheimer’s? But the more I think about it, the more I would be proud to be called my mother’s sequel. I’m certain that anyone who knew Mom would give their right arm to be compared positively to her. She was the most selfless person I’ve ever known. The prayingest person I’ve ever known. The best cook, the best artist, the most humble…
I can remember a couple tizzy fits Mom threw right in the middle of menopause. But dang, other than that it’s hard to think of anything bad coming from Mom.
So I have to say that it is with great pride that I would love to be able to say “I am my mother’s sequel.”
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.”
e all know, even without reading research papers, that music has emotional benefit: it can excite and calm and induce a wonderfully cathartic weeping session. This applies whether you’re healthy or sick; whether you have Parkinson’s or autism or Alzheimer’s.
But studies have found that music can also be of cognitive benefit: it helps people remember things better.
What exactly does this mean, and what specifically does it mean for an Alzheimer’s patient? Does it mean that if you play the oldies station in the background all the time, your Mom will wake up one day and remember everything again?
Let’s look at the evidence:
First of all, "music" is a pretty general term. Are we talking about singing? Playing a guitar? Listening to Mozart? Listening to Bobby McFerrin’s improvisational jazz? Believe it or not, these are all different things.
According to a study reported by Time Magazine,("Music on the Brain")
Different networks of neurons are activated [in the brain], depending on whether a person is listening to music or playing an instrument, and whether or not the music involves lyrics.
In another study, quoted in Neuroscience for Kids,
researchers have recorded neuronal activity from the temporal lobe of patients undergoing brain surgery for epilepsy. During this study, awake patients heard either a song by Mozart, a folk song or the theme from "Miami Vice". These different kinds of music had different effects on the neurons in the temporal lobe.
Also, from Time'“Music on the Brain”
Experimental Audiology in Germany has shown that intensive practice of an instrument leads to discernible enlargement of parts of the cerebral cortex, the layer of gray matter most closely associated with higher brain function.
As you can see, different music affects different parts of the normal brain in different ways.
People are always studying the music-brain connection, trying to understand the mystery of it. There was a particular study done in 1993 that tried to see if music affected memory. The researchers used a song by Mozart for their experiment, and their results seemed to show that this composer’s music improved test-taking. This became widely known as The Mozart Effect, and people started playing Mozart to their unborn babies thinking it would give them a head start in learning.
Though later studies failed to duplicate the Mozart Effect (perhaps the only real effect is that Mozart helps relax the body right before a test), that original research sparked further research into music-as-memory-aid. A recent study, for example, found that Alzheimer’s patients can remember new information if it is sung to them much better than if it is spoken (as opposed to healthy people who can remember it equally well when sung as opposed to spoken).
We also know without reading studies that music helps trigger old memories. For example, when I hear the song "Dust in the Wind," I am immediately transported back to our family van as we drove across the country in 1977. I remember my oldest sister introducing this song to me, and how it resonated with the angst of my teenage years, etc. A whole cascade of memories brought on by a single song.
In a study reported by the Telegraph in 2009, researchers found that this recall effect is due to the fact that music is processed in the same area of the brain that forms vivid memories. They furthermore found that such memories appear to be immune to the ravages of Alzheimer’s. And this could lead to a unique kind of therapy:
Because memory for autobiographically important music seems to be spared in people with Alzheimer’s disease, …making a "soundtrack of someone’s life" before their mind is too damaged, and playing it back to them could help form a resistance to the disease.
Love the idea! Plus I have a variation on this idea from watching this next video of Bobby McFerrin (at a conference called "Notes and Neurons"), and from observing Mom as I play the piano. First, here’s Bobby:
What Bobby is doing here is getting the mind to go in a familiar direction (the pentatonic scale), then leaving an auditory blank and letting the mind fill it in. I mean, aside from jumping around, that's what he's doing. He’s giving the mind a puzzle to solve. He’s making the mind work. And working the mind is better than not working the mind if you want to keep it.
The next part of my idea came from playing the piano for Mom and watching her reaction. You should know Mom hasn’t spoken but a few words in a couple years, and she no longer sings intelligible tunes. You should also know that I don't play the piano. I used to when I was seven, but now my playing is reduced to guessing the notes with my right hand. I can play fast enough for the tune to be recognizable. Barely. Fortunately for Mom, the tune is always a hymn—something she is very familiar with. Unfortunately for Mom, I mangle the tune. And that's where the puzzle comes in.
See, when my finger's can't find the right note, Mom gets exasperated and sings it out loud to help me find the dang thing. I'm even wondering if this puzzle-solving exercise is a factor in Mom's recent awakening.
So here is my variation on the soundtrack idea. Try this exercise (for an Alzheimer’s patient) with the following video clip:
Play it once. It will probably be familiar to the listener already, but there are enough repetitions in this piece that parts of it will quickly become familiar if they aren’t already. Play the video again, but pause the video every so often. There are a ton of repeated theme snippets. Pause before a theme is repeated and see if the listener is prompted to supply the missing piece. If they do, you've got a good puzzle to use.
Then, if you do this with that "Life Playlist", you should be able to double the benefit in fighting that Alzheimer’s monster.
Music and Caregiving—Pandora to the Rescue
Alzheimer’s and Music: Stimulating the Brain into Action
Posit Science Blog, Your Brain on Jazz
American Music Conference, Music and the Brain
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.
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.
The topic of fasting and Alzheimer’s has been on my mind lately because, well, Alzheimer’s is always on my mind and because recently a friend of mine got on this diet where you’re supposed to eat six small meals a day to trick your body into not storing fat.
Since intermittent fasting has been shown to slow body and brain aging, I wonder (the fat part aside) what this continual eating is doing to the brain.
From Psychology Today (2003):
It has been known for years that sharply restricting the calorie intake of laboratory animals increases their life span. But a new study by researchers from the National Institute on Aging found
John Thorndike’s The Last of His Mind is a work skinned in the devastating story of Alzheimer’s, but shows what an unexpected gift caregiving can be for a child who longs to understand the one who shaped so much of his own understanding of life and relationships.
In these pages, John Thorndike gives up the comforts of his normal life in Ohio to care for his father in the last year of his battle against Alzheimer’s. John takes this time to examine himself in the light of the two people who shaped him most—his proper, emotionally absent New England father and his passionate, dissatisfied mother. “No wonder I study my parents,” he says. “Within the compass of their lives, everything is foretold.”
More than anything, the author wants a peek at his father’s heart, but finds it impossible to reach through the shining armor that encases him. In the end, though, he finds that it’s not his father’s armor that shines, but his character. And in the end, the year of loneliness and frustration yields the sweetest of fruit: a softer, mended heart.
John Thorndike brings out the True by exposing the Fraud, and it’s contagious. I feel wholly exposed after reading this book, yet more able to forgive myself, to love Dad—imperfections and all, and to accept the inherently flawed but courageous effort we all make in loving those closest to us.
True, this book is about the beastliness of Alzheimer’s, but it should be read by anyone who hungers to know a parent and to find themselves healed in the acceptance of an imperfect knowledge.
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.
A curious thing happened to me on my way to finding the cure for Alzheimer’s all on my own: I gained more respect for drug research companies, for neurologists, for folks who are obsessed with theories and practically live in their labs trying to prove their theories. More specifically, I gained greater respect for drug companies that fail colossally, then dust themselves off and try again.
After Eli Lilly revealed that their latest trials of the Alzheimer’s drug semagacestat resulted in greater dementia in their subjects, the response from the public was overwhelmingly angry. Adding to Lilly’s revelation, a recent report on Alzheimer’s drug company stocks by NeuroInvestment painted a bleak picture of the effectiveness of Alzheimer’s drug development across the board, giving the impression that research in the field is pretty much a crap shoot.
If you follow the very well-attended Alzheimer’s Reading Room online, you will see an interesting reaction to these reports. Richard Taylor (who suffers from Alzheimer’s) is one of many who feel crushed and devalued by the repeated failures of Alzheimer’s drug trials. Imagine trying to live with hope, then seeing over and over again that no matter how much money and time is spent on Alzheimer’s research, reality refuses to sustain any hope.
No matter the good intentions, Alzheimer’s research seems a recipe for failure.
This week I got a wee taste of what things might look like from the inside of these drug companies. For the past few years, I’ve been building a theory of Alzheimer’s of my own and keeping my eyes peeled for evidence that would support my suspicions. More recently, I decided to take a serious look at my hunch and see if a) I could gather legitimate scientific data that would shed light on my “theory,” and, b) see if this data had any kind of flow to it—if it had a “storyboard.”
My motives were twofold: I like to discover truths; and I very much want to avoid getting Alzheimer’s (like my mother). Curiosity and Fear fed my research. When I finally thought I had an airtight storyboard, excitement at the implications led to action: I shot off my “storyboard” to a leading researcher in the field.
Sobriety set in the next day. I took another look at what I’d written, then re-checked my sources and found not just one, but several really weak extrapolations in my thinking, and one particularly week substantiation of the evidence. I should have waited. I should have spent another eight weeks (I know, right?) researching before putting it out there and risking embarrassment.
But think about it: the possibility of being right on something so devastatingly urgent will make people take risks. And I’m not talking only about the drug companies; people signing up for drug trials are equally taking risks, knowing that the outcome is not certain at all. When you consider that it takes years and years and years to move inches in the direction of a safe and effective drug release (such as the six years it took to find how a fine-tuned alternate to semagacestat About a decade ago, Dr. Greengard and his postdocoral students made their first discovery on the path to finding the new protein. They got a hint that certain types of pharmaceuticals might block beta amyloid. So they did an extensive screen of pharmaceuticals that met their criteria and found that one of them, Gleevec, worked. It completely stopped beta amyloid production. That was exciting, until Dr. Greengard discovered that Gleevec was pumped out of the brain. Still, he found that if he infused Gleevec directly into the brains of mice with Alzheimer’s genes, beta amyloid went away. ‘We spent the next six years or so trying to figure out how Gleevec worked’ on gamma secretase, Dr. Greengard said. He knew, though, that he was on to something important.functioned in mice), the urgency for a cure leads all sides to gamble on a shortcut. And we’re not interested in companies that aim to keep the Alzheimer’s victim home “three months longer.” We want a cure.
Colossal goals risk colossal failures.
Can you just imagine what went through the minds and guts of Lilly’s leaders when they realized they’d failed? When they had to go out there and tell their shareholders of their failure?
“Well, there’s good news, and there’s bad news. The good news is that our drug was more effective than the placebo…”
Of course drug companies are going to be motivated by the excitement of financial gain. But they’re also going to be motivated by the fear of getting it wrong. They know what failure can do to their reputations and their ability to fund further research.
Today, Indystar.com published a very thoughtful article on Eli Lilly’s semagacestat trial failure. You won’t have to wonder what it was like behind the scenes at Eli Lilly—the article gives you a pretty well-rounded look. You also won’t have to wonder what someone’s response would be after being given the drug and having it backfire. From the wife of one participant:
“I just hope the researchers dig their heels in and keep trying to find a cure,” Dianne said. “That’s the important thing.”
I know there’s the whole layer of marketing that plants diseases into people’s conciousness so drug companies can make money off their fears. For this there is a solution: TiVo (and the advice of a good doctor).
But we shouldn’t assume that everyone researching Alzheimer’s has only one goal in mind—to get into our pockets with random, pointless medications. Any rational company would avoid this particular field: the risk of failure is pretty much guaranteed.
I hope we can learn from Eli Lilly and other Alzheimer’s research companies to risk failure; to work even harder; to join forces in finding a cure.
This week I started wearing the monovision contact lens that I got three years ago. This is the lens that you wear in one eye to correct for reading while leaving the other eye free to focus on things in the distance.
I tried this lens years ago but found it unacceptable. Everything was at once blurry and sharp, and I couldn’t tolerate the tiniest bit of blur in my vision.
I realized it was a mental adjustment—I would have to learn to choose the sharpness of one eye over the blurriness of the other at any distance until all I saw was sharpness. But I was impatient and gave up on the adjustment period, resorting instead to donning and doffing reading glasses when in need.
Now my close-up vision has gotten so bad that when I tried the monovision lens this time, my mind was quite happy to accept the gift of semi-sharpness without the need to scout around for glasses. It took a very short time, in fact, for my brain to adjust and see all things in focus at all distances.
Remarkable how the brain can do that.
I learned a similar lesson in life with the attitude of gratitude. I was going through a very stressful, heart-rending period when nothing seemed to be “working” for me. One day I plopped down on the floor and began to say “thank you” for every part of my life. It was a turning point in my stress level. I began to see not problems but challenges; not curses but blessings. And what a difference it made!
Alzheimer’s and other devastating diseases, I’m noticing, can be lenses that change the way we see life; they change what we think is important; they bring into focal clarity the gift of family, friends, community, connection. I’m amazed as I surf the blogs written by sufferers and caregivers to see the softness that takes over when anger ends. I’m amazed, for example, with Michael J. Fox’s attitude toward his Parkinson’s, calling it a “liberating” gift. I’m touched by the may bloggers who share of the immense struggle of caregiving and the eventual gratitude it produces in them.
It’s always a choice the person makes to see disease differently. Or rather, to see the value of the person despite the disease.
In this season of Thanksgiving, it is good to see the change that Alzheimer’s and other diseases have brought to our self-centered culture.
So, thank you to all of you who write and share of your struggles, forming a new community that chooses to rise above bitterness and embrace even the bleakest, darkest days of life for the goodness they produce.
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.
- 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