A couple days ago we had a March Babies birthday party here at the house. It’s a tradition my sister started a few years ago because so many of her friends have birthdays in March, and this is a great way to kill a bunch of birds with one shotgun. As I was sitting listening […]
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 […]
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 […]
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease. Here is why I think there […]
Deep In The Brain is a cerebral self-examination written by a philosophy professor who was riding the top of a success wave when he was diagnosed with Parkinson’s. Talk about the relationship between mind and brain! Here is one who, thanks to his training, steps outside himself to make an objective assessment of his behavior […]
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease.
Here is why I think there is an inherent problem with this guideline:
If you go the the Alzheimer’s Association website and take the interactive tour of a brain with Alzheimer’s (a fantastic tool!), you will notice that there is a general pattern to the progression of Alzheimer’s and its accompanying symptoms. Specifically, looking at slide 13 you will see that the first part of the brain to be affected by Alzheimer’s is the inner core where the hippocampus resides—that part of the brain responsible for short-term memory. From there, damage spreads outwards to the cortex of the various lobes. As the second image in slide 13 shows, the Frontal Cortex is affected in mid stages of Alzheimer’s. This area is responsible for attention, social skills and intelligence (or wit). It is associated with “personality.”
Now, if an effective drug for Alzheimer’s were to be developed, you would expect to see the least damaged areas respond first, followed by the most heavily damaged areas.
Such were the preliminary results of the clinical trial of Dimebon. In reading the various anecdotal accounts of the Dimebon trial (see Bob DeMarco’s piece on the Alzheimer’s Reading Room), the results seemed to show precisely this initial response: Alzheimer’s sufferers reported increased alertness, social skills, and wit. Here is a sample quote from the various testimonials:
The major drug companies are focusing on memory. Are they after the right target? I’ll tell you this, in weeks 6 through 18 in the Dimebon clinical trial my mother was more engaged with me, more aware of her surroundings, more interesting, and more like her “old” self then she had been in six years.
The least damaged areas of the brain were affected in the 12-week trial! Then the trial was stopped because the inner (most damaged) area of the brain showed no marked improvement.
Would it not make sense to glean from the trial that a logical reverse course of the disease was set in motion and to continue it to see if the pattern held?
Pfizer et al, could you give us another 12 weeks when studying Alzheimer’s please?!
[Note: this analysis is mine alone. It may not be true that the least affected areas would show improvement first]
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.
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 week I started wearing the monovision contact lens that I got three years ago. This is the lens that you wear in one eye to correct for reading while leaving the other eye free to focus on things in the distance.
I tried this lens years ago but found it unacceptable. Everything was at once blurry and sharp, and I couldn’t tolerate the tiniest bit of blur in my vision.
I realized it was a mental adjustment—I would have to learn to choose the sharpness of one eye over the blurriness of the other at any distance until all I saw was sharpness. But I was impatient and gave up on the adjustment period, resorting instead to donning and doffing reading glasses when in need.
Now my close-up vision has gotten so bad that when I tried the monovision lens this time, my mind was quite happy to accept the gift of semi-sharpness without the need to scout around for glasses. It took a very short time, in fact, for my brain to adjust and see all things in focus at all distances.
Remarkable how the brain can do that.
I learned a similar lesson in life with the attitude of gratitude. I was going through a very stressful, heart-rending period when nothing seemed to be “working” for me. One day I plopped down on the floor and began to say “thank you” for every part of my life. It was a turning point in my stress level. I began to see not problems but challenges; not curses but blessings. And what a difference it made!
Alzheimer’s and other devastating diseases, I’m noticing, can be lenses that change the way we see life; they change what we think is important; they bring into focal clarity the gift of family, friends, community, connection. I’m amazed as I surf the blogs written by sufferers and caregivers to see the softness that takes over when anger ends. I’m amazed, for example, with Michael J. Fox’s attitude toward his Parkinson’s, calling it a “liberating” gift. I’m touched by the may bloggers who share of the immense struggle of caregiving and the eventual gratitude it produces in them.
It’s always a choice the person makes to see disease differently. Or rather, to see the value of the person despite the disease.
In this season of Thanksgiving, it is good to see the change that Alzheimer’s and other diseases have brought to our self-centered culture.
So, thank you to all of you who write and share of your struggles, forming a new community that chooses to rise above bitterness and embrace even the bleakest, darkest days of life for the goodness they produce.
The topic of fasting and Alzheimer’s has been on my mind lately because, well, Alzheimer’s is always on my mind and because recently a friend of mine got on this diet where you’re supposed to eat six small meals a day to trick your body into not storing fat.
Since intermittent fasting has been shown to slow body and brain aging, I wonder (the fat part aside) what this continual eating is doing to the brain.
From Psychology Today (2003):
It has been known for years that sharply restricting the calorie intake of laboratory animals increases their life span. But a new study by researchers from the National Institute on Aging found
We already know that a Mediterranean diet helps stave off signs of dementia, but who wants to eat flavorless vegetables all the time?
If you think you have to sacrifice that deeply satisfying taste of butter and meat that you don’t typically get in a vegetable-rich diet, you don’t know Yum Sauce! This sauce is of Japanese origin and is full of protein, B-complex vitamins (B1, B3, B6, B12), and antioxidants—and best of all, it rounds out the flavor of anything you put it on with a “meatiness” that will satisfy the carnivore in you.
The dish pictured here is a prime example of a Mediterranean diet with a Japanese twist: a bed of baby spinach leaves with sauteed butternut squash, topped with Yum Sauce. Use this sauce on any steamed vegetable, over rice, or even on salad, and you’ll be on your way to fighting memory loss!
1/2 cup olive oil
1/2 cup water
1/2 cup nutritional yeast
3 packets of lemon or orange-flavored vitamin C
2 Tbsp soy sauce
4 Tbsp almond butter or peanut butter
2 cloves crushed garlic
1/2 cup black beans with juice
1 tsp cumin powder or curry powder
1 tsp white pepper
Throw everything in a blender and puree until smooth. Store in a refrigerator for up to one week.
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 agree with the entire revision of the story of Alzheimer’s, but I did like the tenor of the book. It’s compassionate toward those who suffer from dementia and even more so toward those who suffer from the stigma of dementia. It is angry at Big Pharma—the machine that markets fear of dementia so they can sell their mostly ineffective drugs. And it is angry at the medical establishment that succumbs to that marketing—toward doctors who accept gifts (in disguise) in exchange for prescribing Big Pharma drugs to their patients.
Dr. Whitehouse stresses that he was one of the cogs in that machine. His research helped write the story of Alzheimer’s as a disease, and his advice was sought after by pharmaceutical companies as they worked to develop drugs like Aricept and Namenda.
He was part of the machine until he realized he had helped create a monster that now feeds on the stigma of dementia such that no one is allowed to age with dignity if aging includes any level of dementia. The stigma of dementia has been blown up so large that anyone with a tinge of it is considered finished. People are no longer a mixed bag of assets and deficits. Once a person’s memory starts to go, he has no value unless the “deficit” is “fixed.”
Dr. Whitehouse points out instead that even with cognitive deficits, human beings still have plenty of assets to draw from in living fully satisfying lives.
So what is the myth?
Yesterday a social worker came to the house to evaluate Dad for possible in-home care assistance. It was a thoroughly humiliating experience for Dad.
The list of questions issued were designed to find out exactly what Dad can and cannot do for himself. The fact that Dad can’t do much at all for himself is something we try not to throw in his face even as it happens. Every time Dad can’t sit in the chair correctly and a struggle ensues to find the right verbal or physical cue to help him do so, Dad’s self-esteem takes a dive. Every time he can’t find a certain room in the house… can’t tell time… etc. So when a list of questions comes along and lays out each and every one of his deficiencies in one sitting, piling them up in front of him like so much garbage to be hauled around, well, it would be an understatement to say it was humiliating.
The further we got into the questionnaire, the more Dad’s countenance fell. It got to the point that I let Dad tell the social worker that he had no problem doing x or y or z, even though I knew the truth.
We ended up somewhere between the truth and Dad’s dignity, honoring neither.
At the very end, this wise social worker asked a question that was clearly not on the list. She asked, “Do you like to fish?”
You could see the dark cloud lift from over Dad’s beaten-down self! A tiny bit of affirmation in the midst of all that pummeling! Never mind that Dad can’t do it anymore; the question at least allowed him the pleasure of showing a positive side of himself. For once, he got to answer a very truthful “yes!”
And that made me wonder: why can’t we–in the pursuit of scientific correctness–remember the spirit of a man? Why can’t we sprinkle questionnaires with bits of affirmation for the sake of dignity alone? Would it hurt science or government to ask “what’s one of your favorite books?” to a woman applying for food stamps? Or “what superpowers would you most like to have?” to a veteran seeking disability assistance? Shoot, while I’m at it, can we change the the category from “seniors and people with disabilties” to “seniors and people with abilities”? There are always things we can still do; things we still like; things we still dream about.
Just stuff I wonder.
And you? Do you have any beef with questionnaires?
When dealing with Parkinson’s, sometimes one symptom can dictate behavior and end up causing a cascade of physical problems.
Symptom and consequence in point: hand tremors can lead to decreased liquid consumption (because the Parkinson’s patient is embarrassed to spill every time he drinks), and decreased liquid consumption can exacerbate constipation and possibly lead to impacted bowels in a Parkinson’s victim.
In dealing with Dad, we found that one solution to this cascading problem is a spill-proof sipping container. Dad used to spill everything on himself, the table, the floor. Now when his shaking is bad, we put all liquids in the spill-proof water bottle, and he is no longer embarrassed to drink.
The nice thing about the Camelbak water bottle is it’s sleek, sporty design which makes Dad feel like he fits in more with our physically active family.
So if you are having a hard time coming up with a Father’s Day gift for your Parkinson’s dad, this is my suggestion.
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.
Like the title of this blog says, there are things to be learned from all kinds of dementias. Here is a particularly astounding thing to learn: severe autism does not necessarily mean the sufferer is mentally retarded. This video will shock you into looking beyond the outward appearance of those who cannot communicate and into the soul.
Sometimes I wonder how much like this girl my mother is. How much does she really know about what’s going on around her?
Yesterday I came across Lewis Carroll’s “Jabberwocky” poem in Alice in Wonderland (you can download the whole book for free at Gutenberg).
I’ve always loved how Carroll made nonsense words sound like language. But what got me this time around was Alice’s response, and the parallel of that with how I feel about “talking” to Mom.
‘Twas brillig, and the slithy toves
Did gyre and gimble in the wabe;
All mimsy were the borogoves,
And the mome raths outgrabe.
‘Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!’
Rose Lamatt recently sent me her book Just a Word: Friends Encounter Alzheimer’s—the true account of her best friend’s rapid decline after being diagnosed with Alzheimer’s, and of the author’s life as a caregiver. After reading (or should I say “crying”) my way through this book, I decided I had to recommend it to all my readers as well.
I read and liked Still Alice, but it doesn’t hold a candle to Just a Word when it comes to describing the wretchedness of Alzheimer’s and of caregiving and of life in a nursing home after home-based caregiving is no longer an option. Just a Word may not be as polished a work as Still Alice (my editor’s eyes kept making corrections until the story sucked me in), but this book will give you the real thing: Alzheimer’s with poop and bruises and the constant anguish of those trying to love and care for its victims (unlike the sanitized version in Still Alice).
In all my reading on Alzheimer’s, I have not found anything so powerful as this book to stir a desire to rid this disease from the face of the earth!
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
- alzheimer's antipsychotics art award body-language book-review cancer caregiving causes coping cues cure death dementia diagnosis diet Dimebon disabilities drugs early-onset ego end-stages fear gadgets gut heredity humor images language lifestyle metabolism movies music parkinson's phenotype prevention progression research seniors slideshow stigma stress symptoms validation violence
- tiago: In researching the human gut over the last few wee...
- Deborah: I wanted to speak to John more about his father's ...
- Chip Allen: Enjoyed your article about Khan Academy. I had a m...
- EHOB Inc: Hopefully other caregivers find some relief and hu...
- Kim: Oh Marty, that made my day. Thanks for posting it!...
- "Where to, Bud?" Early Onset Alzheimer's Blog - A thoughtful blog by a man with early onset Alzheimer’s
- Alzheimer's Reading Room - In it for the long run with Dotty
- Alzheimer's Research Forum - Targeting Breakthrough Research
- Annals of Neurology - Latest studies in neurology
- Changing Aging by Dr. Bill Thomas
- How to Live a Longer Life - Nutrition ideas and secrets on increasing longevity
- Journal of Alzheimer's Disease - an international multidisciplinary journal with a mission to facilitate progress in understanding the etiology, pathogenesis, epidemiology, genetics, behavior, treatment and psychology of Alzheimer’s
- Kris Bakowski's Blog on Early-Onset Alzheimer's - Kris is an active advocate for Alzheimer’s research
- Posit Science Blog - mind science
- The Dopamine Diaries - Lucid reflections on Dementia Care and Aging Well
- The Hope of Alzheimer's - Mary Kay Baum and sisters with early-onset speak out
- The Last of His Mind - Joe Thorndike, once the managing editor of Life and the founder of American Heritage and Horizon magazines, succumbs to Alzheimer’s
- The Myth of Alzheimer's - A doctor’s perspective on Alzheimer’s
- The Tangled Neuron - A Layperson Reports on Memory Loss, Alzheimer’s & Dementia
- The Brain’s Springboard to Creativity
- Citizen Science: Help Shed Light on the Brain-Gut Connection
- Getting Old With a Sense of Humor
- Living With The Jabberwocky
- Free Academy for The Aging Brain
- Water and The Aging Brain
- Best of the Web Nomination
- Bexarotene: Hope, Hype, Hooold It!
- Guest Post: I Wish I Knew Then What I Know Now
- The Brain: Divided We Conquer
- We are All Snowmen
- Does the Pursuit of Happiness Lead to Brain Aging?
- The Compulsion to Label
- The Myth of Alzheimer’s: Book Review