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 […]
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!
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?
I don’t know how much I’ll be able to write about Parkinson’s here. If I write about Parkinson’s, it’ll be about how it’s affecting Dad. And if I tell you the things this disease makes Dad do, you won’t have a pretty picture of Dad. And that ain’t fair.
Here’s just a little, white example. A couple days ago Dad had to go to the bathroom. He asked what direction the bathroom was, and I pointed it out. He walked to the bathroom door, then asked me again where the bathroom was. I told him he was standing at the bathroom door. He said, “And now what?” I explained that he had to walk over to the toilet. He was standing four feet from the toilet and asked, “Where?” I put pressure on his back and gently led him to the toilet. He said, “And now?”
I had to help him through the whole process.
The concept “how to back up” seems to be the biggest obstacle his brain has to overcome. He can’t figure out how to back up to the toilet before sitting, or once he’s in a chair, how to back up from the edge. The same when he goes to bed.
My sister and I try “scoot back, Dad.” He scoots forward even though he’s already on the edge of whatever. We try changing the cue. “Put your back here” (while patting the back of the chair). Nothing. “Lift your bottom and move it back.” Nothing. Yesterday I tried switching languages. I said, “Put your butt in reverse” in Portuguese. He couldn’t do it, but he did double over laughing. And that’s a huge gift.
But these gifts are hard to come by. So I probably won’t write much about Dad and his Parkinson’s. I’d rather you see the adventurous man who loaded up his wife and eight kids in a van and drove from New York to Bolivia in 1966. This man taught us all kinds of good things about nature and God, and I’d rather not leave you with a highly unbalanced picture of who he 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.
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:
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!
It's just one doctor after another these days…
We barely got to the clinic and we were both already exhausted: Dad from getting dressed, fed, squeezed into a jacket, compressed into the car, ejected from the car, and hung in a wheelchair. Me from doing all that to him without the cooperation of his muscles. We didn’t even want to go into the clinic. I told Dad that what we should do is write a children's book about aging and how fun it is. Dad laughed. I said we could describe how you get to ride around in a cool scooter—even inside the house. And how you get to have cool leopard print all over your skin without paying a cent for it. And how if you get skin cancer on your ear, you have to have a chunk cut off (like Dad) and then you can fit right in with the folks at Rivendell or Lothlorien.
I really see some potential there.
Might as well take this big old lemon and make lemonade.
(P.S. If you have any more ideas for the book, let me know)
By now it’s not news that scientists at Case Western have successfully used a cancer drug to clear plaques from the brains of mice that were engineered to have Alzheimer’s, resulting in a reversal of rodent dementia. The hope is that this drug will do the same for humans.
Here is a more in-depth explanation of Bexarotene (“Drug Reverses Alzheimer’s Symptoms in Mice”):
Alzheimer’s disease arises in large part from the body’s inability to clear naturally-occurring amyloid beta from the brain.
In 2008, Case Western Reserve University researcher Gary Landreth, professor of neurosciences at School of Medicine, discovered that the main cholesterol carrier in the brain, Apolipoprotein E (ApoE), facilitated the clearance of the amyloid beta proteins. […] The elevation of brain ApoE levels, in turn, speeds the clearance of amyloid beta from the brain. Bexarotene acts by stimulating retinoid X receptors, which control how much ApoE is produced. …bexarotene improved memory deficits and behaviour even as it also acted to reverse the pathology of Alzheimer’s disease [and] worked quickly to stimulate the removal of amyloid plaques from the brain.
[T]he drug addresses the amount of both soluble and deposited forms of amyloid beta within the brain and reverses the pathological features of the disease in mice.
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AC6BTV7AQCKPToday I stopped at a light and to my right was a truck hauling what looked like a small, complete house all wrapped in white plastic. I wonder if it was one of these “Granny Pods” that are becoming a hit all over the country. I don’t know what people are bellyaching about. I think these are a great idea! It would be like playing house and you wouldn’t have to put up with any teenagers blaring music from their room as you would if you lived in the real house. Think I’ll order one with a Japanese soaking tub when I get around to needing one.
More on the brain’s default network:
The default network in the brain is considered a “second brain” because it turns on when the rest of the brain is at rest, and turns off when the rest of the brain is at work. Normally, that is. As people age, the default network is less and less capable of shutting down when the mind is concentrating on some difficult cognitive task as it would do in a younger adult’s brain. Since the default network uses 30% more resources than the rest of the brain, you can see how the resources available for cognitively challenging tasks decreases as we age.
In Alzheimer’s, you get the extreme case of this aging effect: the default network doesn’t shut down at all when it’s supposed to (same as in Schizophrenia–which is probably why they use antipsychotic drugs meant for Schizophrenia in Alzheimer’s patients) until that part of the brain eventually dies.
The default network is not very developed in children. It gets more active as we grow into adulthood. That makes me wonder if language is the software that runs the default network. Think about it: the default network is the part of the brain that sorts, categorizes, and edits/deletes memories, and language is the software that sorts, categorizes, and edits/deletes meaning. With language also comes prejudice, and prejudice does not exist in the very young. Also, in Alzheimer’s the default network eventually atrophies, and language ceases (just further argument that the default network is inextricably tied to language).
All of which brings me to the point of this post. Last week there were articles all over the news saying that having more than one language guards you against the worst of Alzheimer’s. Mom spoke four languages and fell prey to Alzheimer’s in her sixties–with no family history of early Alzheimer’s. Dad spoke three
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?
John Thorndike’s The Last of His Mind is a work skinned in the devastating story of Alzheimer’s, but shows what an unexpected gift caregiving can be for a child who longs to understand the one who shaped so much of his own understanding of life and relationships.
In these pages, John Thorndike gives up the comforts of his normal life in Ohio to care for his father in the last year of his battle against Alzheimer’s. John takes this time to examine himself in the light of the two people who shaped him most—his proper, emotionally absent New England father and his passionate, dissatisfied mother. “No wonder I study my parents,” he says. “Within the compass of their lives, everything is foretold.”
More than anything, the author wants a peek at his father’s heart, but finds it impossible to reach through the shining armor that encases him. In the end, though, he finds that it’s not his father’s armor that shines, but his character. And in the end, the year of loneliness and frustration yields the sweetest of fruit: a softer, mended heart.
John Thorndike brings out the True by exposing the Fraud, and it’s contagious. I feel wholly exposed after reading this book, yet more able to forgive myself, to love Dad—imperfections and all, and to accept the inherently flawed but courageous effort we all make in loving those closest to us.
True, this book is about the beastliness of Alzheimer’s, but it should be read by anyone who hungers to know a parent and to find themselves healed in the acceptance of an imperfect knowledge.
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.
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.
- 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
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