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
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:
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.
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.
The other night I watched the movie Limitless. I thought it was a typical heart-pounding thriller with a touch of fantasy—in this case about a guy who discovers a drug that turns him into a genius. I thought the plot was moving toward the inevitable crash he would suffer when his supply ran out (as happened to everyone else in the movie whose supply ran out).
Then came the twist at the very end that made me laugh out loud. OMG, what Pretty Woman was to prostitutes, Limitless is to drug addicts and the whole drug industry.
If you’re smart enough, it says, you can make the perfect brain drug; you can take the last dose of the perfect drug to a lab and figure out how to reverse engineer and reproduce it; and you can figure out how to tweak it downwards in a perfectly safe manner (all within very short time periods); then you can wean yourself from a phenomenally addictive drug; and finally, you can train your brain to retain all the benefits of said drug once you have weaned yourself off it.
HA HA HA HA HA.
I think the whole problem I have with the drug industry is that, except in this extreme pharmacofantasy, it is additive rather than subtractive. You add one drug to treat a condition, then you add another to deal with the side effects of the first drug, then you add an nth drug to deal with the side effects of the combination of all the previous drugs.
Why not start with subtraction?
What are we injesting that we should cut out? Sugar? Preservatives? Smoke? Alcohol? Pesticides?
How often/much are we eating that we should cut back? Are we inhibiting certain enzymes—such as the anti-aging SIRT1—that only activate during fasting hours?
Maybe less is more?
Let’s start by removing the offending substances first, because once you start adding, it’s not you who benefit. It’s the industry that initially did have your brain in mind but now needs you to need them more and more.
Anyway, ever since my sister-in-law’s mother was taken to the doctor with signs of Alzheimer’s and discovered to have nothing but dehydration, I’ve been meaning to read up on how exactly the lack of water hinders brain function.
Here’s what I found about dehydration and the aging brain:
Not much—unless you count articles on websites trying to sell water filtration systems.
The fact that water makes up 70-80% of a nerve cell and transports both nutrients and wastes from neurons means it is essential for proper brain function all through life. That’s a given. What’s not a given is how much a brain has to be depleted of water to affect cognition.
Rigorous research on the topic of the brain and dehydration is limited. Even the “standard facts” about the body and water are all over the place: babies come out of the womb composed of 90% water; no, 78%; no, make that 70%. In adults, the proportion is 60% water for males and 55% for females. The consensus is 50-60% for adults in general. The brain is 60% water; nay, 90%. Whatever.
As for how much water you need to drink on a daily basis to be properly hydrated, oy, there is no consensus. For years I’ve been hearing “8 cups a day.” No allowance for a sedentary life or for someone with a diet of fruits and vegetables (which are high in water content); no penalty for eating junk food (which would increase the need for the detoxifying properties of water) or for spending days cooped up near a wood stove.
One article quoted the Mayo Clinic as saying that “the average adult loses more than 80 ounces of water every day through sweating, breathing, and eliminating wastes,” and therefore you’d have to drink 10 cups of water/day to rehydrate. I searched for the quote on the Mayo Clinic site and didn’t find it. Instead, I found a recommendation for 6-8 cups of water per day.
Suppose you take the most conservative recommendation of 6 cups per day–do you follow that? I don’t think I’ve ever gone one whole week drinking that much per day.
It has been estimated that 75% of Americans are chronically dehydrated. OK, that figure is questioned. But it seems to be a fairly hard fact that “among people over 65, dehydration is one of the most frequent causes of hospitalization.”* Understandable: throw in a bit of incontinence, and fear of hydration soars. Also, some medications are diuretics, and after 50, the body loses kidney function and is less able to conserve fluids.*
But how bad is dehydration for your brain?
According to Lumosity, when your body lacks water,
brain cells and other neurons shrink and biochemical processes involved in cellular communication slow. A drop of as little as 1 to 2% of fluid levels can result in slower processing speeds, impaired short-term memory, tweaked visual tracking and deficits in attention. With proper hydration however, neurons work best and are capable of reacting faster.
But pinning down the exact link between hydration and cognitive function is tricky in the lab. From Hydration and Human Cognition:
Although adequate hydration is essential for optimal brain function, research addressing relationships between hydration status and human behavior and cognitive function is limited. The few published studies in this area are inconclusive and contradictory. The impact of variations in hydration status, which can be substantial as humans go about their daily activities, on brain function and behavior is not known and may impact quality of life.
From PubMed’s Hydration and Cognition: a Critical Review and Recommendations for Future Research: “The limited literature on the effects of dehydration on human cognitive function is contradictory and inconsistent.” The monkey wrench in research here is given as confounding factors:
Confounding factors, such as caffeine intake and the methods used to produce dehydration, need to be considered in the design and conduct of such studies. Inclusion of a positive control condition, such as alcohol intake, a hypnotic drug, or other treatments known to produce adverse changes in cognitive performance should be included in such studies. To the extent possible, efforts to blind both volunteers and investigators should be an important consideration in study design.
On the Mayo Clinic site, a Dr. Lette finds that “there’s no scientific evidence that drinking large amounts of water is good for one’s health.” The recommendation in this article is to drink when you’re thirsty, and that’s enough.
My question is, does the lack of scientific evidence mean there is no scientific proof or merely that there is no motivation to research the topic to obtain the evidencef? Who, after all, would fund research into water being fundamental to the health of the aging brain? Not the pharmaceutical industry. If you could avoid dementia by being continually hydrated, you wouldn’t need pills to fix dementia. Why would any self-respecting drug company fund that finding? And if it takes a lot of money to work through all the confounding factors, who’s going to pay for it?
The thing is, when the anecdote about my sister-in-law’s mother is not even rare, it makes me wonder how many cases of Alzheimer’s are checked for a history of dehydration. I don’t mean just the over-the-weekend kind of dehydration, but long-term, chronic shortage of water.
As with Mom. The list of things Mom was doing “right” for her aging brain is stellar: she was highly educated, spoke multiple languages, was given to prayer and meditation, was active in the community, etc., etc. Yet she succumbed to complete dementia in her early seventies! Could it all have been due to her severe distaste for water? I mean, she hated water–would gag if she drank it straight from the tap. Could her present dementia have been prevented by a regimen of 4+ cups of plain ole water daily?
I hate to look at the “what if” from Mom’s point of view, but for our generation and beyond, it needs a good deal more consideration than we’re giving it.
What do you think? Am I grasping at straws? (I suppose that’s OK as long as the straw is propped inside a nice glass of water, right?).
Water and Brain Function
Water in the Body”
You’re Not Demented, Just Dehydrated
Dehydration and Cognitive Performance
Hydration and Cognitive Function in Children
Nerve and Muscle Cells
Impaired cognitive function and mental performance in mild dehydration
We are continually hearing that Medicare is going to go bankrupt by mid-century thanks to the skyrocketing costs of an aging population in need of prescription drugs and dementia care.
Medicare Part D costs to the government in 2010 were $62 billion and are projected to climb to $150 billion by 2019. And Medicare costs for Alzheimer’s care will increase more than 600 percent, from $88 billion today to $627 billion in 2050.
Here is a double-barreled solution to the costs of Medicare Part D and Alzheimer’s care: replace prescription drugs with equally effective placebos and employ mildly-cognitively-impaired individuals as healthcare enhancement agents.
This is not a joke. Here is why this would work and save the federal government billions:
Placebos—if delivered properly—could potentially be more effective and considerably less costly than many current prescription drugs.
Here is an example of an experiment with placebos for a “purely physical ailment”:
One group was simply put on a waiting list; researchers know that some patients get better just because they sign up for a trial. Another group received placebo treatment from a clinician who declined to engage in small talk. Volunteers in the third group got the same sham treatment from a clinician who asked them questions about symptoms, outlined the causes of [their ailment], and displayed optimism about their condition.
Not surprisingly, the health of those in the third group improved most. In fact, just by participating in the trial, volunteers in this high-interaction group got as much relief as did people taking the two leading prescription drugs for IBS. And the benefits of their bogus treatment persisted for weeks afterward, contrary to the belief—widespread in the pharmaceutical industry—that the placebo response is short-lived.
It has been found that placebos can sometimes work even better than the leading prescription drug for any given disease, with certain factors contributing to their effectiveness:
Yellow pills make the most effective antidepressants, like little doses of pharmaceutical sunshine. Red pills can give you a more stimulating kick. Wake up, Neo. The color green reduces anxiety, adding more chill to the pill. White tablets—particularly those labeled “antacid”—are superior for soothing ulcers, even when they contain nothing but lactose. More is better, scientists say. Placebos taken four times a day deliver greater relief than those taken twice daily. Branding matters. Placebos stamped or packaged with widely recognized trademarks are more effective than “generic” placebos. Clever names can add a placebo boost to the physiological punch in real drugs. Viagra implies both vitality and an unstoppable Niagara of sexy.
If you’re thinking that the suggestion of using placebos is unethical, check out this study:
“Not only did we make it absolutely clear that these pills had no active ingredient and were made from inert substances, but we actually had ‘placebo’ printed on the bottle,” says Kaptchuk. “We told the patients that they didn’t have to even believe in the placebo effect. Just take the pills.”
The participants were monitored for three weeks and, at the end of the trial, 59% of the patients given the placebo reported ample symptom improvement as compared to 35% of the control group. Furthermore, participants who took the placebo had rates of improvement about equal to the effects of the most powerful IBS drugs.
Deception is unethical. Honesty is not. If there is a joke it’s in the current medical practice of prescribing expensive drugs that are sold without the most important ingredient that made them effective in the trials—the same ingredient that makes placebos effective.
As we would all imagine, the most important factor in the effectiveness of placebos is the doctor’s bedside manner. That is, the presence of compassion in the treatment of an ailment.
Regarding a Cognitively Impaired Workforce
The double-barreled solution in employing people with mild dementia as healthcare enhancement agents is that we would save on prescription drugs, hospital recovery times, and also be assigning purpose to people with mild cognitive impairment. Folks whose initial downward slope in the aging process is a bit early are not an “unproductive force in the economy.” There is richness of intellect, creativity, and compassion that could be tapped rather than stomped on per our current dementia stigmatization.
There was a time when people with physical disabilities couldn’t get jobs. But we’ve come a long way in learning of the tremendous contribution that the disabled can give, and have accommodated the workplace for such individuals with ramps and wider doorways and elevators in order to reap this benefit. Why not do the same for MCI individuals? Why are we instead discarding this tremendous resource?
In reading blogs of people with early-onset Alzheimer’s, one of the biggest stresses for both the sufferer and the government is issuance of social security disability benefits. Why not offer employment rather than cash benefits? If compassion at the bedside of a sick person dramatically speeds the healing process, think of the savings accrued by employing love & joy-givers in hospitals, clinics, nursing homes?
In his book The Gift of Pain, Dr. Brand lists the factors that enhance pain and prolong the healing process: fear, anger, guilt, loneliness, boredom, helplessness. He then describes how perfectly suited many institutions are in promoting these feelings with their sterile settings, uncommunicative doctors and nurses, boring surroundings (and now that nurses spend all their time at computer terminals per our new streamlining guidelines, these factors are further compounded). Healthcare institutions could cut their costs by employing people to:
Design and paint interesting scenes on hospital ceilings
Play instruments in institutional corridors (not just harps, please!)
Make dolls for nursing home patients
Read aloud to patients, or simply visit
Reupholster institutional furniture with fun fabrics
Take certified dogs into institutions for cheery visits
The savings in dollars would be compounded all around, and the savings in dignity for all healthcare users a welcome change for our society.
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.
Definitely my pick for the most practical gift you can give yourself or a loved one suffering from Alzheimer’s.
What’s your pick?
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
One thing Parkinson’s can’t take away from a man is all he has passed on in his lifetime. Here is Dad, rock-hounding Parkinson’s style. The fact that he can’t stand up on his own or kneel and claw through the dirt to get to the jasper or petrified wood doesn’t detract from the fact that he instilled the love of nature and science in his children. It’s in our blood now to visit all the national parks we can and to dig for fossils wherever there be beds.
He’s taught his children so many good things, and Parkinson’s can’t take that away from him.
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.
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.
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!
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.
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