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 […]
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 […]
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 […]
We are continually hearing that Medicare is going to go bankrupt by mid-century thanks to the skyrocketing costs of an aging population in need of prescription drugs and dementia care. Medicare Part D costs to the government in 2010 were $62 billion and are projected to climb to $150 billion by 2019. And Medicare costs […]
This weekend I picked up and devoured Dr. Oliver Sacks’ The Man Who Mistook His Wife for a Hat—a fascinating collection of clinical tales of neurological aberrations accompanied by philosophical and social observations regarding the people affected by these aberrations. One of the first things that hit me as I read these tales was remorse […]
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.
Funny how that commercial for Pristiq antidepressant gets it wrong. The last thing in the world we Alzheimer's victims (on both ends) need is a big old hand winding us up even more! Yikes! A better image would be seeing that key spin in the opposite direction, letting that purple-clad lady relax completely. Now there’s a pill I'd buy!
It’s ads like that that take me back to Princess Bride and Wesley’s pronouncement: "Life is pain, highness! Anyone who tells you otherwise is selling something." A lot of people have to put up with a lot of pain. It's not just us.
So perspective helps some.
Here are some other things that help:
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.
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.
If you’re like me and need a visual representation of the brain’s anatomy to understand Alzheimer’s and Parkinson’s research better, here are a few good slide shows and videos for your educational pleasure:
How The Brain Works
From the Mayo Clinic. This is a good starter slide show of the brain’s main functions. In eight slides you get a basic outline of the lobes of the brain and their purposes.
Dementia Pictures Slideshow: Disorders of the Brain
From MedicineNet. These 31 slides show what happens to the brain in cortical, subcortical, progressive, primary, and secondary dementias.
From the Alzheimer’s Association. In 17 slides you will learn about the brain’s basic functions, then how the brain is affected in Alzheimer’s by amyloid beta plaques and tau tangles.
Zoom In and Search for a Cure
From Emergent Universe. This is a fun, artsy, and very interactive show depicting what happens in the brain affected by Alzheimer’s Disease. Among other things, you will discover why ab42 is more toxic than ab40.
Inside the Brain: Unraveling the Mystery of Alzheimer’s Disease
This is a video put out by several government organizations (the NIH, NIA…) showing the pathology of Alzheimer’s in the brain.
The Secret Life of the Brain
From PBS. Here are three interactive shows (requires Shockwave), including, History of the Brain, 3-D Brain Anatomy, Mind Illusions, and Scanning the Brain.
Brain Rules: Sleep
Now that findings show beta amyloid buildup is cleared during sleep, this slide show will be of special interest, as it shows the role of sleep in brain function.
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.
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.
We are continually hearing that Medicare is going to go bankrupt by mid-century thanks to the skyrocketing costs of an aging population in need of prescription drugs and dementia care.
Medicare Part D costs to the government in 2010 were $62 billion and are projected to climb to $150 billion by 2019. And Medicare costs for Alzheimer’s care will increase more than 600 percent, from $88 billion today to $627 billion in 2050.
Here is a double-barreled solution to the costs of Medicare Part D and Alzheimer’s care: replace prescription drugs with equally effective placebos and employ mildly-cognitively-impaired individuals as healthcare enhancement agents.
This is not a joke. Here is why this would work and save the federal government billions:
Placebos—if delivered properly—could potentially be more effective and considerably less costly than many current prescription drugs.
Here is an example of an experiment with placebos for a “purely physical ailment”:
One group was simply put on a waiting list; researchers know that some patients get better just because they sign up for a trial. Another group received placebo treatment from a clinician who declined to engage in small talk. Volunteers in the third group got the same sham treatment from a clinician who asked them questions about symptoms, outlined the causes of [their ailment], and displayed optimism about their condition.
Not surprisingly, the health of those in the third group improved most. In fact, just by participating in the trial, volunteers in this high-interaction group got as much relief as did people taking the two leading prescription drugs for IBS. And the benefits of their bogus treatment persisted for weeks afterward, contrary to the belief—widespread in the pharmaceutical industry—that the placebo response is short-lived.
It has been found that placebos can sometimes work even better than the leading prescription drug for any given disease, with certain factors contributing to their effectiveness:
Yellow pills make the most effective antidepressants, like little doses of pharmaceutical sunshine. Red pills can give you a more stimulating kick. Wake up, Neo. The color green reduces anxiety, adding more chill to the pill. White tablets—particularly those labeled “antacid”—are superior for soothing ulcers, even when they contain nothing but lactose. More is better, scientists say. Placebos taken four times a day deliver greater relief than those taken twice daily. Branding matters. Placebos stamped or packaged with widely recognized trademarks are more effective than “generic” placebos. Clever names can add a placebo boost to the physiological punch in real drugs. Viagra implies both vitality and an unstoppable Niagara of sexy.
If you’re thinking that the suggestion of using placebos is unethical, check out this study:
“Not only did we make it absolutely clear that these pills had no active ingredient and were made from inert substances, but we actually had ‘placebo’ printed on the bottle,” says Kaptchuk. “We told the patients that they didn’t have to even believe in the placebo effect. Just take the pills.”
The participants were monitored for three weeks and, at the end of the trial, 59% of the patients given the placebo reported ample symptom improvement as compared to 35% of the control group. Furthermore, participants who took the placebo had rates of improvement about equal to the effects of the most powerful IBS drugs.
Deception is unethical. Honesty is not. If there is a joke it’s in the current medical practice of prescribing expensive drugs that are sold without the most important ingredient that made them effective in the trials—the same ingredient that makes placebos effective.
As we would all imagine, the most important factor in the effectiveness of placebos is the doctor’s bedside manner. That is, the presence of compassion in the treatment of an ailment.
Regarding a Cognitively Impaired Workforce
The double-barreled solution in employing people with mild dementia as healthcare enhancement agents is that we would save on prescription drugs, hospital recovery times, and also be assigning purpose to people with mild cognitive impairment. Folks whose initial downward slope in the aging process is a bit early are not an “unproductive force in the economy.” There is richness of intellect, creativity, and compassion that could be tapped rather than stomped on per our current dementia stigmatization.
There was a time when people with physical disabilities couldn’t get jobs. But we’ve come a long way in learning of the tremendous contribution that the disabled can give, and have accommodated the workplace for such individuals with ramps and wider doorways and elevators in order to reap this benefit. Why not do the same for MCI individuals? Why are we instead discarding this tremendous resource?
In reading blogs of people with early-onset Alzheimer’s, one of the biggest stresses for both the sufferer and the government is issuance of social security disability benefits. Why not offer employment rather than cash benefits? If compassion at the bedside of a sick person dramatically speeds the healing process, think of the savings accrued by employing love & joy-givers in hospitals, clinics, nursing homes?
In his book The Gift of Pain, Dr. Brand lists the factors that enhance pain and prolong the healing process: fear, anger, guilt, loneliness, boredom, helplessness. He then describes how perfectly suited many institutions are in promoting these feelings with their sterile settings, uncommunicative doctors and nurses, boring surroundings (and now that nurses spend all their time at computer terminals per our new streamlining guidelines, these factors are further compounded). Healthcare institutions could cut their costs by employing people to:
Design and paint interesting scenes on hospital ceilings
Play instruments in institutional corridors (not just harps, please!)
Make dolls for nursing home patients
Read aloud to patients, or simply visit
Reupholster institutional furniture with fun fabrics
Take certified dogs into institutions for cheery visits
The savings in dollars would be compounded all around, and the savings in dignity for all healthcare users a welcome change for our society.
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!’
How much time is enough time? We know we are mortals and we know life is but a breath. In light of eternity, we calculate that 100 years passes as quickly as twenty. Yet, given anything less than 100, and we say we’ve been “cut off.”
My big, strapping brother-in-law lays in the hospital right now, fighting for each new minute after a two-year battle with brain cancer. He is tired, and he is ready to rest. We would prefer the doctors find a cure and make him bounce back, but we want to let him go.
Throughout this whole battle, Ken’s mind worked around his brain to bring humor and gratitude to his situation. He firmly believes God’s purposes can be worked through the worst tragedies, and it is amazing to hear how his concerns were always for the eternal perspective he could bring to the waiting room, the surgery room, the recovery room.
Ken’s life may be cut short in our view, but it has been a life well-lived, and that’s more than a lot folks can say. Socrates said that an unexamined life is not worth living; an anonymous person added that an unlived life is not worth examining. I can vouch for Ken that he’s had a life worth examining.
April 26, a.m.: Ken had a brain hemorrage last night and is on life support. Awaiting a family gathering to let him go.
April 26, 7 p.m. Goodbye Kenny. From someone who was present at his bedside: ” just wanted to write and let you know that Ken’s passing was beautiful in the midst of family and hymns and Scripture. The more that Daniel read and Ruth recited the easier his respirations…and soon he just passed on.”
We already miss your booming laugh, your exhuberant living, and your unwavering faith. Save us a place at the banquet table, and we’ll see you in the morning.
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.
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.
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.
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