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 […]
The other day my sister saw a note I had written on a sticky pad. It was a list of things I needed to do, one of them being to order a refill of Mom’s Seroquel. Except my sister read “Mom’s sequel” and thought I had written a book about Mom and was now working […]
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.
This past week has been a little brutal on my ego. My fictitious self (the me I hold in high regard) has seen its reflection in various external realities and has taken a mortal blow.
At least I hope it has.
You see, I’ve had to acknowledge all in one breath that I’m not as clever as I thought I was; I’m not all that kind or thoughtful of others; my conversation skills have dulled; and my hair isn’t really red (all this self-revelation is partly due to reading Crazy Love—a book that spoons out truth about the self in a cod-liver-oil kind of way: nasty; painful; healing).
I’ve been thinking a lot about my hair in particular, perhaps as a metaphor for all the other traits I have to face up to in myself. My hair—which appears rich and red and full to others—is actually flimsy and almost entirely white. If you look close enough and run your fingers through the root system, the truth is quite apparent: I’m somewhere between grizzly gray and snow white. And as metaphor, I’m thinking it’s time to go white once and for all. It’s time to stop covering up the truth.
Just one thing holds me back: the stigma of white. No, not that elegant, brilliant white, but the mousy salt-and-pepper white. It’s terrifyingly old. I know the difference it would make at the supermarket, at the realtor’s office, at a job interview. I’m young; I should not have to place myself in the old category just yet. Lushious red gives you youth and authority. Mousy gray, and it’s an uphill battle to convince others you can still think. It’s ridiculous that pigment can make the world go ’round, but there you have it.
I know you’re wondering why I’m talking about hair in a blog about dementia, but you’ve probably sensed the connection. Aging has enormous stigma in our culture, and everything in us resists revealing anything that might indicate we are aging. Particularly for those of us who are aging prematurely.
My struggle with hair has atuned me to the struggle in the early-onset Alzheimer’s community. I follow a group on Facebook called Memory People comprised of people of all ages who have been diagnosed with some kind of dementia, their caregivers, and other supporting cast. Some members are open about their dignoses and are brave enough to face public scrutiny; others accept their diagnoses but keep it somewhat private; and still others straddle the cover-up fence: should they reveal something that isn’t fully blown yet but could have as devastating results as if it was? All of them long to live truthfully, but all also know the stigma of dementia and the costs incurred in making their mental status known. As with pigment, we are valued for our synaptic connections. Why would anyone want to expose their deficits and risk rejection?
It makes my stomach turn. What kind of society have we become? When are we going to change the way we value each other? When are we going to free ourselves from the layers of untruth that we spend a lifetime building up? When are we going to trade all our lies in for Truth and finally be set free?
As an artist whose artistic mother also has Alzheimer’s, this movie hit home for me. It was like watching my own mother lose all her nouns, then her knowledge of interpreting nouns on a canvas, and finally her knowledge of self.
In this film, the mother’s sorrow and fear are mitigated by the son’s desire to hang out with her. I only hope his desire lasted beyond the making of the film. For the sake of all those with Alzheimer’s, I hope love lasts beyond the time the disease is an interesting artistic or scientific curiosity. I hope it lasts beyond the time a diseased person has anything at all to offer.
I took Dad for a walk tonight. It wasn’t a long walk. Dad was tired and didn’t really want to go. But he acquiesced to my prompting, and we walked to the end of the 50-yard driveway.
The whole time we walked, I supported Dad’s right arm. And the whole time we walked, Dad’s arm shook violently. By the time we got back, my arm was buzzed and aching.
Then it occurred to me that if Dad’s energy gets passed onto me in this bad way, perhaps we could harvest the energy in a good way. I suggested to him that we design something like the soccer ball recently invented by those Harvard girls—you know, the ball that stores the energy of a game’s worth of kicking into a battery that can then be used to light up the Third World.
But hey, why not harvest the energy generated by Parkinson’s tremors? Maybe we could even wire the energy back into the brain for deep brain stimulation therapy.
There’s got to be an up side to the down side of this energy-depleting disease!
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!
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.
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.
Definitely my pick for the most practical gift you can give yourself or a loved one suffering from Alzheimer’s.
What’s your pick?
The other night I attended an author’s reading of a first-time novel.
The main character in the novel is an immigrant computer programmer with terrible social skills trying to navigate his way around the American culture. His mistakes are endearing and a good mirror into the idiosyncrasies of American culture.
In the question and answer period of this reading, someone shot up their hand and asked if the main character suffered from Asperger’s Disease because of his mental brilliance and social ineptitude.
I think the author’s answer was something along the lines of “uh…” which mirrored my own reaction to the question. I’d smiled at the word Asperger’s and felt my stomach lurch at the word Disease. I’ve always thought of Asperger’s more as a cool color to be rather than a disease. Besides, why the need to label?
Why can’t we just accept a different package of assets and challenges in a person and enjoy their uniqueness rather than feel the need to cubbyhole folks into categories?
I just looked up the number of brain-related disorder labels and found a list of 50, among them “intermittent explosive disorder” which is basically the display of temper tantrums. Get real, folks!
What are labels & diagnoses? Something to shield other people from us as well as something to hide behind?
My recommendation for anyone suffering from excessive labeling (both giving and taking) is to read the book “You are Special” by Max Lucado. The interesting notion in this book is that positive labeling can be as harmful as negative labeling because it enslaves us to other people’s opinions. Freedom comes in checking in constantly with our Maker and knowing He loves us as we are.
Read and re-read and practice what you read.
Dare to be yourself.
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.
The other day my sister saw a note I had written on a sticky pad. It was a list of things I needed to do, one of them being to order a refill of Mom’s Seroquel. Except my sister read “Mom’s sequel” and thought I had written a book about Mom and was now working on a sequel. Not a far-fetched idea, as I’m always writing some book or other under the covers with a flashlight (so to speak).
Turns out I’m not writing a sequel about Mom.
Unless I’m writing it with my life.
In my last post I expressed fear that I might be following in my mother’s footsteps. Who wants to inherit Alzheimer’s? But the more I think about it, the more I would be proud to be called my mother’s sequel. I’m certain that anyone who knew Mom would give their right arm to be compared positively to her. She was the most selfless person I’ve ever known. The prayingest person I’ve ever known. The best cook, the best artist, the most humble…
I can remember a couple tizzy fits Mom threw right in the middle of menopause. But dang, other than that it’s hard to think of anything bad coming from Mom.
So I have to say that it is with great pride that I would love to be able to say “I am my mother’s sequel.”
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.
On Saturday, August 21, 2010, God took Dad home. God did not wait until we were ready for this. He waited until Heaven couldn’t stand Dad’s absence any longer.
I’m posting this video about how we deal with death in our current culture because I think our attitude of denial in the face of death needs to change. Considering my family’s immediate reaction of trying to revive Dad–even though he requested a DNR–I’m speaking from experience. Our natural tendency is to hold on as long as possible. But this isn’t necessarily the best for those we love.
Letting go is so stinking hard!!
All the more reason to think and plan ahead for the death of those you love.
I saw an old friend yesterday and we caught each other up on our families. I told him I recently lost my brother-in-law to brain cancer. He said he was about to lose his sister to the same. Then he shared how his sister—who has a month or two left to live and is tired as can be—blurted out a couple days ago that “There are just so many fun things left to do.” No self-pity; no giving up despite the shortness of time. Her mind is winning over her dying brain.
I am deeply humbled by this woman’s attitude. I want to think like her—to take what’s left in the glass and drink it! Yet here I am with probably years left to live, claiming to be getting the upper hand on this Alzheimer’s caregiving business, but feeling devoid of creative ideas for living, for laughing, for loving.
I need help making a list. I have to have a bunch of small stuff, because the big stuff like going to a play or out to dinner or hang gliding don’t work with both parents. I just want some ideas for bringing laughter into our home.
To start, here are some little things that make Mom laugh:
Dancing for her with a feather boa.
Episodes of “I Love Lucy.”
Singing raucous songs loudly.
Pretending to eat her up.
Laughing babies (like this youtube one):
Here are some things that make Dad laugh:
Pretending to eat him up.
Episodes of The Colbert Report.
Mom when she’s in a funny mood.
And here are some new things I’m going to try:
Wear a fake mustache to the dinner table.
Spray whipped cream on Dad’s nose.
Put a fake snake or tarantula in the bathroom before Dad goes in.
Find a DVD of Victor Borge (like this youtube):
I’d love to hear your ideas, and I’ll leave you with this fun project: make a muppet like the one in the introductory picture above to add some fun to your Alzheimer’s caregiving.
Wait, here’s another idea: make these funky glasses. They crack everybody up!
- alzheimer's antipsychotics art award body-language book-review cancer caregiving causes coping cues cure death dementia diagnosis diet Dimebon disabilities drugs early-onset ego end-stages fear gadgets gut heredity humor images language lifestyle metabolism movies music parkinson's phenotype prevention progression research seniors slideshow stigma stress symptoms validation violence
- Jaini King: I am so sorry for your loss...from reading your po...
- Marty D: Jaini, I ache for you, your mom, and your dad. Mom...
- Jaini King: I found your blog snd I could not stop reading. M...
- tiago: In researching the human gut over the last few wee...
- Deborah: I wanted to speak to John more about his father's ...
- "Where to, Bud?" Early Onset Alzheimer's Blog - A thoughtful blog by a man with early onset Alzheimer’s
- Alzheimer's Reading Room - In it for the long run with Dotty
- Alzheimer's Research Forum - Targeting Breakthrough Research
- Annals of Neurology - Latest studies in neurology
- Changing Aging by Dr. Bill Thomas
- How to Live a Longer Life - Nutrition ideas and secrets on increasing longevity
- Journal of Alzheimer's Disease - an international multidisciplinary journal with a mission to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behavior, treatment and psychology of Alzheimer’s
- Kris Bakowski's Blog on Early-Onset Alzheimer's - Kris is an active advocate for Alzheimer’s research
- Posit Science Blog - mind science
- The Dopamine Diaries - Lucid reflections on Dementia Care and Aging Well
- The Hope of Alzheimer's - Mary Kay Baum and sisters with early-onset speak out
- The Last of His Mind - Joe Thorndike, once the managing editor of Life and the founder of American Heritage and Horizon magazines, succumbs to Alzheimer’s
- The Myth of Alzheimer's - A doctor’s perspective on Alzheimer’s
- The Tangled Neuron - A Layperson Reports on Memory Loss, Alzheimer’s & Dementia
- The Brain’s Springboard to Creativity
- Citizen Science: Help Shed Light on the Brain-Gut Connection
- Getting Old With a Sense of Humor
- Living With The Jabberwocky
- Free Academy for The Aging Brain
- Water and The Aging Brain
- Best of the Web Nomination
- Bexarotene: Hope, Hype, Hooold It!
- Guest Post: I Wish I Knew Then What I Know Now
- The Brain: Divided We Conquer
- We are All Snowmen
- Does the Pursuit of Happiness Lead to Brain Aging?
- The Compulsion to Label
- The Myth of Alzheimer’s: Book Review