At a time when Americans, along with citizens from many countries around the world, are increasingly disillusioned with the broken top-down model of leadership—be it in politics, economics, or science—it’s exciting to see opportunities popping up for bottom-up, citizen-driven models for change. Individuals are making things happen in politics (as in the Facebook-driven “Arab Spring” […]
I’ve had water on my mind lately (which is not the same as, but does not preclude, water on the brain). 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 […]
Here’s a fascinating animation superimposed over a lecture by psychiatrist and writer Iain McGilchrist on the two hemispheres of the brain. You may have to watch it 15 times to really get it.
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 […]
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 […]
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.
Yesterday I asked my sister—who is visiting from abroad—what signs of Alzheimer’s she sees in herself. She rattled off some memory problems such as forgetting names of acquaintances or not being able to place someone’s face when out of context. Nothing particularly Alzheimersy, just decreased mental sharpness.
She then asked me if I was experiencing any unusual mental hyperabilities and went on to explain how she seems to have gained a fantastic ability to call up words she didn’t even know she knew.
Funny, I told her. I had this post saved as a draft when she asked me the question. The answer is yes, I’m experiencing this very same thing, and am curious to know if there is a name for it.
Is there such a thing as hyperphasia—the flip side of aphasia? The term hyperphasia exists, and it’s defined as an uncontrolled impulse to talk. But that’s not what I’m referring to. I’m referring to the mind’s sudden ability to pull up obscure words when common words won’t present themselves. Words so obscure that we had no idea we knew them.
I’m well acquainted with aphasia—the “tip of the tongue but it just won’t come” nature of language loss. I’m also familiar with another embarrassing result of gradual mental decline: the mind’s tendency to call up words similar in shape, but wholly different in meaning from the one the user wants. Try Googling “fairy schedule” next time you want to cross the Puget Sound to see what I mean.
But what is it called when the mind calls up unknown words that perfectly fit the context they were intended for? Does neurology study mental surfeits as well as deficits?
I told my sister that I’ve had arguments in my head over this new ability. One night, for example, I went to bed, and as I lay my head on the pillow a picture of our living room doorway came to mind, and with it the word “transom.” I immediately questioned myself:
“Transom? What’s that?”
“It’s the big piece that spans the top of the doorway, dummy.”
“How’d you know that?”
“I don’t know. I just know that it is.”
“You’re probably thinking of Hansom. And I think that’s a horse carriage, not a doorway.”
“No, I know hansom is a carriage. Transom is the door thingy.”
With that, I got out of bed and looked the word up in the dictionary: a horizontal crossbar in a window, over a door, or between a door and a window or fanlight above it
“OK, you were right.”
My sister laughed and said, yes, that’s exactly what goes through her brain.
So my question is, what is this newly acquired hyper-phasia called? And is it common to everyone as their minds begin to deteriorate?
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.
Because it’s Fall and crisp out and a good time to sit down to a good movie, I’m posting one of my favorite suggestions for a movie that deals with Alzheimer’s.
How To Kill Your Neighbor’s Dog is an unfortunate title for a great movie about self-centeredness and the cure for immaturity. The story centers around a playwright with writer’s block who must exit himself in order to find inspiration. Alzheimer’s isn’t the main theme of the movie, but it is present in the background, and the most lucidly-spoken scene in the movie is between the mother-in-law with Alzheimer’s and her brilliant, unhappy son-in-law.
Thought I’d pass it on.
Today the world has been given the very bad news that there is nothing that can help prevent or slow the progression of Alzheimer’s. The disease is a thief and a murderer, and nothing can stand in its way.
I say the folks who did these studies need to study Mom. Round out the evidence of all that hopeless progression with a little taste of surprising regression.
I wrote the rest of this post a week ago, but only got around to publishing it today:
Mom is going backwards. She’s regressing, it seems to us, and that’s a good thing when you have Alzheimer’s.
How? What? When? Where? Why? Is it wishful thinking that we’re seeing marked improvement in Mom’s cognition, or is this real?
Exactly what I’m asking myself these days. Granted, being a highly motivated observer may make my observations suspect, but I feel it would be irresponsible not to report what appears to be clear evidence of improvement in Mom’s condition. It would be irresponsible of you not to suspect my findings, but dumb not to take a look at all.
So here goes.
A few weeks ago, we who have been taking care of (or been around) Mom for the past three years noticed that we were telling people Mom was having a good month. We were used to telling people that Mom was “having a good day” every now and then. A good day once a week was a good thing. But the entire month of March of this year seemed to be “a good day.” It came to the point that we were scratching our heads saying, “Hmm. Maybe Mom doesn’t have Alzheimer’s. Maybe this was all stress, and now that she’s been de-stressed for three years, she’s coming back.”
So I decided to take inventory of the new signs of cognition (and physical improvement) coming from Mom these days. What exactly is she doing that she wasn’t doing before? This is what I have:
- Mom has gained weight. Exactly a year ago Mom weighed 85 pounds and was bed-ridden with pneumonia. Hospice pronounced her a week from the grave. Today Mom weighs 95.5 pounds. No sign of physical sickness (OK, an occasional night fever and drippy nose).
- Mom sucks from a straw. For the longest time, we were having to “prime the pump” to get Mom to suck from a straw. A year ago, when we put a straw in her mouth, nothing would happen. So we’d plug the straw with our finger, then release the contents into her mouth, and, voila, she’d start sucking. Now Mom sucks as soon as the straw hits her lips.
- Mom opens her mouth at the sight of food. Again, for the longest time we’d just get a pleasant stare when we lifted a fork to her mouth. Two years ago, it would take us a good hour and a half to get through breakfast because it was only one time out of ten that Mom’s lips would part when we brought food to her mouth. Now, six-seven times out of ten, her mouth opens like a baby bird’s. Breakfast time has been cut in half.
- Mom swallows. Up until (this is where I wish I’d kept an exact diary) about four months ago, Mom had a permanent sore on the right side of her mouth. This was caused by the fact that Mom leans to the right when she sleeps, and food that remained in her mouth (because she wasn’t aware enough to swallow) dribbled out and ate at her skin. No matter how well we brushed her teeth and how much Vaseline we slathered around her lips, the sore was there off and on for the last three years until–a few months ago. The sore has not returned.
- Mom watches TV now. Meaning, she actually turns to it, focuses on it, and laughs on cue–sometimes for a 10-15 minute stretch. This hasn’t happened at all in the past three years until this “awakening.”
- Mom stops at the photo gallery in the hallway, looks at individual family photos and “comments.” For the past three years we’ve been walking through the hallway with Mom–past a 4 foot x 4 foot photo gallery–occasionally stopping to show Mom the family photos in hopes of getting a response. She wouldn’t even look where we were pointing. And if she focused at all, it would just as likely be on a knot in the wood frame as on a photo. Now Mom takes the initiative to stop and look from frame to frame, pointing, jabbering, looking at us and back at the photos. Sometimes getting teary-eyed at our description of the photos.
- Mom is using sentences. I wrote in a previous post that Mom’s language consists almost entirely of two syllable experiments in sound with an occasional word thrown in. We used to get so excited when she uttered a word that we’d call a family member and share the big news. In the past couple weeks, Mom has used short sentences. Like three days ago when I put her to bed, I said, “Mom, I love you.” She nodded and said, “For me, for me, for me too too.” The next morning at breakfast I tried to give her some juice while she was still chewing on her eggs and she shoved my hand aside and said “Put it down down.” I put her down for a nap in the afternoon, put on some Vivaldi, and did a farcical ballet dance (a la BodyVox). She nodded and said, “Yes. I do too too too.” Then that evening when I tried to give her her Seroquel (ground up in some juice), she shook her head. I kept bringing the juice to her mouth, and in exasperation she said, “Tsk! What what what do you do?” (Translation, “cut it out!”).
Four sentences in two days! Yesterday was a quiet day for Mom. No miraculous signs of anything. I’m dying to report more on this healing process, but Mom is not a science project, and I have to remember that she is worth all my love no matter what direction her mind and body take.
But I do think it’s worth mentioning that something has happened to Mom that has sent this Alzheimer’s into some sort of retreat. There is more than death taking place in her brain. Somewhere, somehow, regeneration is taking place as well.
Have any of you had the experience of watching a loved one with Alzheimer’s have a good month? I know Bob DeMarco recently reported an extraordinary event with his mother Dotty. Huge “regressive” step.
Next question will be, what could be causing these amazing regressions? We may have to rely on each other–the caregivers–to find the answer rather than on lab tests alone.
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:
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.
After writing my last post regarding the stress of caregiving, I had to drive somewhere, and in the course of the short trip, I caught a clip of a Haydn symphony on the radio. I don’t know how, but there are sections in there that make me feel as though this exhausted, shriveling heart of mine is actually quite expansive and able not only to cope, but to bring beauty out of the brokenness around me. You know how sometimes you see a scene or a photograph that makes you certain that the universe is true and right and good? Well, music does that, but with thrice the emotion. Music can rewire a frazzled or finished outlook into one of hope. And hope can take you a looooooong way down a very dark road.
All to say that music—in addition to being a fantastic tool for treating Alzheimer's—is a very inexpensive way to get your groove back when you’re done in from caregiving. Or from living a regular life-is-pain-highness kind of life.
To prove this, I'm giving you a little tool in this post that some people may not know about. The tool is called Pandora—an internet service that lets you create your own radio station online.
The extra cool thing about this service is that you can create multiple radio stations, all with different moods—colored by different genres or artists—to suit your changing needs. Sometimes I don't even know what my need is or what it is that will trigger a brighter outlook, so having multiple "moods" to choose from is very useful.
Cutting to the chase, here are four stations I created to get you started. Click on any one of them and follow instructions to log into Pandora. From there, you can tweak the station by "adding variety" (a specific music piece or musician) to the station. You can also "thumbs up" or "thumbs down" any piece that you hear, and the station will remember to pick similar music or not to play that piece in the future. Talk about tailored just for you!
So here goes—four different flavors for your listening pleasure:
Jazz. You know, the good stuff with Stan Getz and Louis Armstrong and Bobby McFerrin and Michael Buble…
This is a fusion of old hymns and contemporary Christian pop. Nice, especially for Sunday mornings.
My personal favorite: spicy Latin mix. Makes you want to jiggle and dance and go crazy! A great stress-reliever.
Classical is music to transport the soul.
A couple more tips: if you want to play this music off your sound system without leaving the kitchen table, you can buy a $4 wireless FM transmitter and send the station to your main tuner. You can also "send the station" to the radio that sits on your mother's side table in the bedroom while you’re working on the laptop in the kitchen. Just a whole lot of things you can do with Pandora!
Do have fun, and come back and post a station of your own creation if you dare!
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
A couple days ago a friend of mine called almost in tears: “I did such-and-such, and I’ve never done such-and-such before. Do I have early-onset Alzheimer’s?”
I laughed. “The thing about Alzheimer’s,” I said, “is that they say not to confuse normal aging with Alzheimer’s, and then they say Alzheimer’s hits long before any recognizable symptoms become evident, so you have to look for signs early on.”
So I want to know: are we to be concerned about Alzheimer’s as soon as we lose our keys for the first time, or should we just laugh it off and look at the bright side of life all through the aging process?
Recently, a new mini-test was developed for the easy detection of Alzheimer’s. It’s called the AD8. This 8-question test is supposed to bring a diagnostic tool into the hands of primary care doctors so that Alzheimer’s can be detected earlier and therefore treated more effectively.
The problem is, there is no effective treatment for Alzheimer’s yet. So what, pray tell, are we doing finding new ways to diagnose this disease when there is no treatment and when the disease itself is not even clearly defined?
When we first brought Dad to live with us, we set him up with a primary care doctor who ran him through the standard Alzheimer’s test: remember these three things; tell me the date; where do you live; what floor are you on; draw a clock that says three thirty; etc. Dad got every single question wrong, and the doctor proclaimed, “You don’t have Alzheimer’s.”
I wanted to laugh. I think it was relief that a doctor would buck the system and refrain from offering perhaps a true but useless diagnosis given the lack of any effective treatment.
Later, we took Dad to a neurologist who got through three of the standard questions and suggested he try Aricept.
We gave Dad the five-week trial supply. It profited him nothing.
I’m not saying that we should refrain from diagnosing diseases. From his neurologist Dad also got a diagnosis of Parkinson’s, and as I’ve pointed out in an earlier post, this diagnosis (though it came late in the progression of the disease) was tremendously helpful in understanding Dad’s behavior and in relieving his sense of guilt. The medication he took for Parkinson’s did him no good either, but the diagnosis itself was helpful—perhaps as much for us, his caregivers, as for him.
But Alzheimer’s is a tricky beast. There are some well-known Alzheimer’s victims like Richard Taylor and Dottie (of the Alzheimer’s Reading Room fame) who are now under fire as possible Alzheimer’s mis-diagnoses. How can anyone have Alzheimer’s for six or ten years and show no decline, or even show improvement over time? It is not the subject’s truthfulness that is questioned but the accuracy of the initial diagnosis (heaven forbid we should think Alzheimer’s can be stayed by sheer willpower—of the sufferer and/or caregiver. That would mean we don’t really need expensive meds).
Is diagnosis of value when there are so many causes of dementia that could result in a false positive? And are the statistics of any value when they are repeatedly misquoted? We keep using the phrase “there are 5.3 million Americans with Alzheimer’s” when the correct statistic is “5.3 million Americans with Alzheimer’s and other dementias“.
One last bit of datum against the usefulness of Alzheimer’s diagnoses: in the U.S., whites tend to get diagnosed and treated more frequently than Hispanics, African Americans, and Asians. Whites seek out professional medical care, while Latinos, African Americans and Asians with Alzheimer’s tend to stay home and be cared for by family. Yet whites with Alzheimer’s die sooner than their non-white counterparts.
If earlier diagnosis is helpful, where is the evidence?
Today a nice physical therapist came to assess a treatment program for Dad—to help him regain his balance and mobility and in so doing help him milk the summer ahead of us.
A couple hours later, while sitting at the table Dad asked me in an unusually clear voice, "What's the agenda?"
I looked up from the computer, slid my glasses down, and asked back, "Agenda for your physical therapy?"
"Agenda for life?" (I thought I’d go for the gusto).
"Yes." He smiled.
"Ah. Well. The agenda for life is to live more fully. You are going to get back to being more fully you. We are going to visit the local museum, go see the natural wonders around us, go to the big city to check out the OMSI exhibit."
He smiled more broadly. We're on the right track.
Shoot, this Parkinson's is going to be a nuisance, but we are going to live one shaky bite, one shuffling step, one tough lesson, one adventurous ride, one grateful day at a time.
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 Alzheimer’s Research Paradigm
If you’ve every studied philosophy of science, you’ll recognize that current research in the field of Alzheimer’s Disease is battling paradigms. The funny thing is, the Alzheimer’s field hasn’t even reached the level of robust theory, yet there is strife in the ranks of researchers fighting over the direction inquiry should take:
“Kill the amyloid plaque!”
“No, viva le beta amyloid!”
“Forget amyloid. It takes tau to tangle.”
“Ha! The biomarker emperor has no clothes!”
“Wait. Isn’t it all about insulin resistance?”
“Nix all the above. Just get quality sleep, and you’ll be fine.”
If you think this is funny, these basic statistics will sober you up:
* As of 2010, there are 5.4 million people in the US with Alzheimer’s
* Almost half the people over 85 have Alzheimer’s
* When the baby boomers come of Alzheimer’s age, the costs of care for this disease alone will cripple Medicare and Medicaid
* Federal funding for research into a cure is dropping fast
* YOU will be paying for either your own care or for that of a loved one if a cure is not found. And YOU will either be grossly neglected when this disease hits you, or you will die the slow death of stress from caregiving for someone else.
Bottom line: research into Alzheimer’s—its cause(s), treatment, and cure—is alarmingly urgent and terribly underfunded.
There are plenty of people out there who believe we shouldn’t put money into research at all, because so far nothing has been found to stay the course of “Alzheimer’s” dementia, and the whole drug industry is just a ploy to line the pockets of the pharmaceutical fat cats. If you’re in that group, you can stop reading this now. If, however, you would really like to see your Mom or Dad or Yourself able to have a meaningful conversation with your loved ones and know whom you’re talking to—hopefully for the rest of your life—read on, because the question isn’t whether or not to research. The question is where do we put our research dollars?
Not a simple answer when you consider that the reigning paradigm for Alzheimer’s research is serious question.
Let me explain with recent findings from my own readings:
A couple weeks ago I attended a Cure Alzheimer’s Fund webinar presented by Dr. Rudy Tanzi (of Massachusetts General’s Institute for Neurodegenerative Disease) on Alzheimer’s research and drug development.
Beta Amyloid: Clues From Our Genes
Dr. Tanzi’s group is in the “clues from our genes” pool (looking at the genes as a starting point rather than, say, looking at diet first). The dominant belief in this pool up until recently is that beta amyloid plaque accumulation in the brain, followed always by tau tangles, are the two main biomarkers for Alzheimer’s Disease. That is, where there is Alzheimer’s, there is an overabundance of beta amyloid plaque and destruction caused by tau in the brain. Also, a higher load of plaque correlates with a higher degree of dementia (see slide from webinar). Plus, as this accumulation progresses and moves to different parts of the brain, there is a parallel manifestation of symptoms.
The connection seems pretty obvious. And Dr. Tanzi certainly has the credentials: back in the 80’s when he was studying Down’s Syndrome, he realized they had isolated the gene responsible for amyloid “plaque” deposits in the brain, and—given that all Down’s Syndrome sufferers end up with Alzheimer’s—thought to make a link between this gene and other cases of Alzheimer’s. From there it was one success after another, with Dr. Tanzi participating in the discovery of three of the four known gene mutations causing early-onset Alzheimer’s (these are the genes that guarantee you will get Alzheimer’s). Granted, early-onset AD accounts for only 5% of Alzheimer’s cases, but it does give weight to the conviction that Alzheimer’s has a genetic link. More recent studies looking at family history suggest that up to 80% of Alzheimer’s cases are genetically influenced (see slide from Tanzi’s presentation).
The presentation is convincing enough until you start reading the commentary in the field and start learning that current direction of research into the causes of Alzheimer’s is highly questioned.
Researchers coming on the scene today, for example, would argue that the plaque theory is circular reasoning. You can’t say that plaque leads to Alzheimer’s if you first define Alzheimer’s as “dementia with plaque.” And when your theory states that plaque accumulation leads to Alzheimer’s, the automatic null hypothesis is that where there is plaque (in copious amounts) you will always find dementia, and when plaque is cleared, dementia will go away.
But this has not born out. It is now known that “roughly one-third of all elderly adults have such plaques in their brains yet function normally.” It has also been proven that the elimination of beta amyloid plaque (achieved by the “Alzheimer’s vaccine”) does not cure dementia.
Thus the paradigm shake-up. Why continue with the biomarker research when the facts don’t bear an airtight connection? Is the “clues from our genes” group too heavily invested financially and psychologically in this line of research (as some suggest) to give it up as dead?
Dr. Tanzi responds to these fears in his recent presentation. He didn’t use the word per se, but nuance was the main come-back. All theories undergo refinement, and this plaque-causes-dementia theory is no exception. Looking at the genes may have lead to wrong conclusions in the past, but there are still some pretty interesting clues to follow going forward.
Here is a crude rendition of the protein-level pathology in Alzheimer’s:
Beta amyloid (Aβ) is cut off from its precursor protein; Aβ links to other ab in small clusters; Aβ kills nerve synapses; Aβ accumulates into plaques
For the past twenty years, research has focused on improving the symptoms of dementia by eliminating the final clusters of beta amyloid (plaques). Looking at the little diagram above, different drugs targeted the beta amyloid at different points on the linear progression toward plaque: Flurizan targeted the process that snipped the Aβ off its precursor protein; Alzemed tried to block the aggregation of Aβ; Dimebon was designed to protect the neurons from Aβ; one drug successfully immunized the brain against Aβ (resulting in clearance of plaque from the brain, inflammation in the brain, and progressive dementia); and finally, drugs were developed (Aricept and Namenda) to act at the symptomatic level.
None has had any significant effect on the brain’s function in memory tests.
Tanzi’s response? Perhaps the reason drug trials fail is that the potency of the drug is off—either too weak or too strong—and funding for a subsequent trial is cut off. Or perhaps researchers need to stare at the diagram a little longer and find out whether beta amyloid needs to be left to do some mission, then cleared before it wreaks havoc on the synapses.
Which is exactly what happened with Dr. Tanzi—a little stroll through the lab, a light-bulb moment, and Tanzi discovers that beta amyloid kills bacteria and yeast like nobody’s business. Beta amyloid is a good guy? The plaques themselves are just “a field of bullets” left over from some major battle?
Definitely worth an investigation. A new direction.
To Fund Or Not to Fund
So it turns out that looking at clues from the genes is not a paralyzing avenue of research after all. Is the paradigm really dead, or just needing refinement? In the new direction of Alzheimer’s research, Dr. Tanzi’s findings have lead to a more recent drug (PBT2) that takes the “antibiotic” role of beta amyloid into account as it tries to clear its toxic leftovers. Do we pull the plug on funding just when the story is getting really interesting?
The competition out there is fierce. You would think from some of the stinging accusations aimed at the “old school” research that funding for groups such as Tanzi’s should be questioned. Yet, as the webinar pointed out, “the vast majority of our knowledge about AD and AD drug discovery has been based on studies of the four known AD genes over the past two decades.” That’s old school success.
On the down side, “about 70% of AD genetics is unexplained by the four known AD genes.” On the further down side, it’s going to take A LOT of funding to find the genetic culprits for the rest of Alzheimer’s cases. And genetics is still only one of several approaches to studying this disease! (Besides, paradigms don’t die until a better one supersedes it, and there is no airtight theory out there yet).
Do we put all our eggs in one basket? What if there aren’t enough eggs to spread around to the different baskets?
Frankly, I don’t know the answer to this question.
There are a couple good reasons I think the Cure Alzheimer’s Fund group is worth supporting, though. One reason is the Cure Alzheimer’s Fund website itself. The Internet has plenty of faults, but it also has the advantage of open criticism. If you look at the comments sections of one of the papers put out by Tanzi’s group on the Alzheimer’s Forum, you’ll see an open debate. It’s free collaboration. It’s crowdsourcing at its best. I think it multiplies the value of your funding dollar.
Another reason is that I’ve suspected my own mother’s caseStay tuned for a post on this topic to be of possible bacterial/fungal origin and am dying to see what this group finds in their new line of research. The only thing I fear is the psychological barrier to this new approach.
A Taboo Research Project?
To be specific: the two agents being considered by Tanzi’s group as possible aggressors in the beta amyloid battle are Chlamydia and Candida Albicans. But looking at Candida Albicans as a possible cause of anything is TABOO in mainstream medicine. Just browse the comments section of a recent article in the New York Times about Candida Albicans, and you’ll see what I mean.
Will Tanzi’s group have the courage to fight all the enemies of research at the same time: tainted motives (the desire for personal glory), psychological entrapment (continuing in a line of research simply because it’s been going on for so long), and mainstream opinion about what is acceptable research (we do not look at X)?
I guess it’s going to take a lot of money to find out. Which brings us back to the basket issue.
Do we have to duplicate Alzheimer’s research at the Federal and State levels? The state of Texas, for example (being one of the top three states that will go broke paying for Alzheimer’s care in the future), is spreading its research egg money into several baskets:
* Prevention and Brain Health
* Disease Management
Why repeat this with every state, plus private groups on the side? Is there a way to get more collaboration between research groups? The well of needed funding is infinitely deep, so why are we digging multiple wells?
I guess part of the answer is that individual motivation for research (even if it is for personal glory) is the strongest kind you can find, and therefore the best engine for finding a cure. And likewise, education plus individual conviction will drive donations. There is certainly enough information available at one’s fingertips to give no one who is interested in a cure an excuse to sit on the sidelines!
So what will you do?
Because where there is a will, there will be a way to end the increasingly long goodbye.
For further reference:
Beta-Amyloid: An Antibiotic? (with a slew of interesting comments)
Alzheimer’s Brain Tangles Offer Clue To Worsening
Alzheimer’s Disease: No End to Dementia
New Potential Cause of Alzheimer’s Disease Detected
Alzheimer’s Scary Link to Diabetes
Follow the Alzheimer’s Breakthrough Ride journal
An video report on several intriguing theories of Alzheimer’s.
In continuation of Alzheimer’s and Glucose Metabolism: The Niacinamide Experiment Part 1
This post is simply me mulling over things I’ve read in light of Mom’s dementia and my own experience with stress and mental short-circuiting, with the conclusion that in some cases of Alzheimer’s, intestinal flora could be greatly to blame. My conclusion also points to the possible way niacinamide could function in correcting one of the malfunctions in the gut-brain axis.
The Gut-Brain Axis
In-depth studies of human intestinal microbes are just now coming into maturity. The Human Microbiome Project is fueled by the increasing belief that the population of bacteria and yeasts that inhabit the human digestive tract is greatly responsible for how the body and mind develop and how they continue to function or malfunction as we tinker with the balance of flora in our gut:
Visionaries are hoping for cures for some forms of obesity and anorexia along with various forms of cancer, asthma, multiple sclerosis, Alzheimer’s, lupus, and most of the major psychiatric diseases. In the future, Blaser [of the infectious-disease research lab at New York University] says, pediatricians could help prevent these diseases by infecting babies with a starter kit of friendly bacteria. “Bottom line, humans and our fellow animals have been colonized by microbes for a very long time, going back a billion years. The microbes that we carry have been selected because they are helpful to us. They participate in human physiology. They are a compartment of the body, like the liver or the heart.” (1)
When the BP oil spill happened in the Gulf of Mexico, we were all
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.
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