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 (https://cth.co.th/alzheimers-disease/) 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?
Diagnosing Alzheimer’s
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:
Regarding Placebos
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.
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.

Jan Petersen
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:
Kris Bakowski
Chuck Donofrio
Richard Taylor
Bill Craig
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.
.
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.
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 over my inadequate caregiving of Dad in the past three years. I mean, the very first case in the book reminded me very much of Dad—his inability to tell the difference between his foot and his shoe; to interpret a picture or the furniture layout of any room; to distinguish between his body and a chair across the room. But whereas Dr. Sacks’ response to these aberrations was fascination, interest, and kindness, mine was a struggle against exasperation, irritability, and impatience.
Why couldn’t I marvel at (instead shake my head at) Dad’s description of his back pain as an imaginary horizontal tube about a foot in front of his abdomen? Why did I only nod in shame when doctors asked, “Is your father’s mentation… always… this… shot?” instead of pushing the observation beyond the superficial to the interesting? If I’d only read this book or studied neurology before taking care of Dad! I feel like a parent looking back on her inadequate parenting skills and feeling remorse over the damage it may have caused.
Dr. Sacks laments the tendency of neurology to focus on “deficits,” leaving the soul out of the doctor’s concern. This echoed my own feelings expressed in the post Regarding Disabilities and Questionnaires. We are so concerned in medicine and social services to define what’s wrong with the patient that we miss seeing the desperate starvation in front of our eyes: the individual’s need for affirmation—for having someone notice what’s right with them. Thus, the simplest of all medicines or disability benefits is left completely out of the picture in professional delineation of care: making use of what’s left of the damaged self to make positive human connections.
From his chapter, “The President’s Speech,” I learned one way to use what’s left of Mom’s mind to connect more effectively with her. Like the patients in the aphasiac ward, Mom too has lost all language while retaining extraordinary function in the area of intonation, body language, inflection, and facial expression. I’ve always sensed that she could “read our body language.” Dr. Sacks’ confirmation of this ability has made me more aware of how I use those meta-verbal cues in communicating with Mom. The smile I get in response is more valuable than any drug-induced ability to tell what date it is.
One of the most fascinating passages in Dr. Sack’s book tells of a man with Tourett’s who, when given Haldol in the smallest of doses, ceased to exhibit the excesses of Tourett’s and became disastrously dulled—both physically and mentally—causing him as much distress as had his Tourett’s dysfunction. It took three months of counseling and “preparation for healing” before the man was again willing to try a tiny dose of Haldol. As Dr. Sacks put it, “The effects of Haldol here were miraculous—but only became so when a miracle was allowed.” Scandalous! Was Dr. Sacks milking the placebo effect for all its worth? I’ve always wondered why doctors don’t deliberately incorporate the placebo effect into the real medication to multiply its effect. Now I know: some do (what’s wrong with spending three months preparing a patient for healing?).
It’s easy to see why Dr. Sacks is considered an exentric. His methods go beyond the cut and dry. They touch the soul. I think I like this.
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!
Yum Sauce
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.
Today the world has been given the very bad news that there is nothing that can help prevent or slow the progression of Alzheimer’s. The disease is a thief and a murderer, and nothing can stand in its way.
I say the folks who did these studies need to study Mom. Round out the evidence of all that hopeless progression with a little taste of surprising regression.
I wrote the rest of this post a week ago, but only got around to publishing it today:
Good news!
Mom is going backwards. She’s regressing, it seems to us, and that’s a good thing when you have Alzheimer’s.
How? What? When? Where? Why? Is it wishful thinking that we’re seeing marked improvement in Mom’s cognition, or is this real?
Exactly what I’m asking myself these days. Granted, being a highly motivated observer may make my observations suspect, but I feel it would be irresponsible not to report what appears to be clear evidence of improvement in Mom’s condition. It would be irresponsible of you not to suspect my findings, but dumb not to take a look at all.
So here goes.
A few weeks ago, we who have been taking care of (or been around) Mom for the past three years noticed that we were telling people Mom was having a good month. We were used to telling people that Mom was “having a good day” every now and then. A good day once a week was a good thing. But the entire month of March of this year seemed to be “a good day.” It came to the point that we were scratching our heads saying, “Hmm. Maybe Mom doesn’t have Alzheimer’s. Maybe this was all stress, and now that she’s been de-stressed for three years, she’s coming back.”
So I decided to take inventory of the new signs of cognition (and physical improvement) coming from Mom these days. What exactly is she doing that she wasn’t doing before? This is what I have:
- Mom has gained weight. Exactly a year ago Mom weighed 85 pounds and was bed-ridden with pneumonia. Hospice pronounced her a week from the grave. Today Mom weighs 95.5 pounds. No sign of physical sickness (OK, an occasional night fever and drippy nose).
- Mom sucks from a straw. For the longest time, we were having to “prime the pump” to get Mom to suck from a straw. A year ago, when we put a straw in her mouth, nothing would happen. So we’d plug the straw with our finger, then release the contents into her mouth, and, voila, she’d start sucking. Now Mom sucks as soon as the straw hits her lips.
- Mom opens her mouth at the sight of food. Again, for the longest time we’d just get a pleasant stare when we lifted a fork to her mouth. Two years ago, it would take us a good hour and a half to get through breakfast because it was only one time out of ten that Mom’s lips would part when we brought food to her mouth. Now, six-seven times out of ten, her mouth opens like a baby bird’s. Breakfast time has been cut in half.
- Mom swallows. Up until (this is where I wish I’d kept an exact diary) about four months ago, Mom had a permanent sore on the right side of her mouth. This was caused by the fact that Mom leans to the right when she sleeps, and food that remained in her mouth (because she wasn’t aware enough to swallow) dribbled out and ate at her skin. No matter how well we brushed her teeth and how much Vaseline we slathered around her lips, the sore was there off and on for the last three years until-a few months ago. The sore has not returned.
- Mom watches TV now. Meaning, she actually turns to it, focuses on it, and laughs on cue-sometimes for a 10-15 minute stretch. This hasn’t happened at all in the past three years until this “awakening.”
- Mom stops at the photo gallery in the hallway, looks at individual family photos and “comments.” For the past three years we’ve been walking through the hallway with Mom-past a 4 foot x 4 foot photo gallery-occasionally stopping to show Mom the family photos in hopes of getting a response. She wouldn’t even look where we were pointing. And if she focused at all, it would just as likely be on a knot in the wood frame as on a photo. Now Mom takes the initiative to stop and look from frame to frame, pointing, jabbering, looking at us and back at the photos. Sometimes getting teary-eyed at our description of the photos.
- Mom is using sentences. I wrote in a previous post that Mom’s language consists almost entirely of two syllable experiments in sound with an occasional word thrown in. We used to get so excited when she uttered a word that we’d call a family member and share the big news. In the past couple weeks, Mom has used short sentences. Like three days ago when I put her to bed, I said, “Mom, I love you.” She nodded and said, “For me, for me, for me too too.” The next morning at breakfast I tried to give her some juice while she was still chewing on her eggs and she shoved my hand aside and said “Put it down down.” I put her down for a nap in the afternoon, put on some Vivaldi, and did a farcical ballet dance (a la BodyVox). She nodded and said, “Yes. I do too too too.” Then that evening when I tried to give her her Seroquel (ground up in some juice), she shook her head. I kept bringing the juice to her mouth, and in exasperation she said, “Tsk! What what what do you do?” (Translation, “cut it out!”).
Four sentences in two days! Yesterday was a quiet day for Mom. No miraculous signs of anything. I’m dying to report more on this healing process, but Mom is not a science project, and I have to remember that she is worth all my love no matter what direction her mind and body take.
But I do think it’s worth mentioning that something has happened to Mom that has sent this Alzheimer’s into some sort of retreat. There is more than death taking place in her brain. Somewhere, somehow, regeneration is taking place as well.
Have any of you had the experience of watching a loved one with Alzheimer’s have a good month? I know Bob DeMarco recently reported an extraordinary event with his mother Dotty. Huge “regressive” step.
Next question will be, what could be causing these amazing regressions? We may have to rely on each other-the caregivers-to find the answer rather than on lab tests alone.
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.
AC6BTV7AQCKP

Caregiving not for the fainthearted
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:
- A good cup of coffee in the morning
- Music (it's amazing how music can change the mood)
- A five minute sit on the porch
- A hot shower
- A good cry
- Painting
- Blogging
- A long primal scream
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?
Now that’s what I mean. You read something about Alzheimer’s, and all of a sudden you see evidence everywhere that you’ve got it and that your life is over.
I’ve avoided reading Still Alice for years precisely because I knew it would send me reeling with the truth of my own “probable” early-onset Alzheimer’s. But I did finally pick it up, and, sure enough, suffered a major breakdown right about chapter three. Yikes! I do have it. Just like Alice, I forgot I was supposed to work on Friday, and when my sister called to remind me, I crumbled. It’s not just that I forgot. It’s that I forgot and didn’t have that nagging feeling telling me that I was forgetting something eating away at me. It was the peaceful forgetting that terrified me. Surely this doesn’t happen to a person unless they have Alzheimer’s. Ever. Right?
Is this forgetting normal or something more sinister? Is it stress from caring for Mom with Alzheimer’s and Dad with Parkinson’s (with a touch of menopause for me), or am I following in my mother’s footsteps?
The lucky thing for me is that I don’t have medical insurance-which means I can’t go to a doctor for a diagnosis. I say I’m lucky because, as we all know, it’s not so much the disease that hurts people, it’s the diagnosis. And it’s not just any diagnosis. Cancer, people rally around you. Alzheimer’s or any kind of mental illness, and the room empties out.
Shoot, you can have the disease for years, but as soon as you get diagnosed, that’s when the tazing starts. People just automatically take out their stigma-tazers and start shooting. And they think they have it set on stun, but really those stigma-tazers are always set on kill.
So my question is, what do you do when you read or hear about terrifying conditions to keep yourself from assuming yourself into that condition and absorbing the fear that is often marketed with it? How do you “keep your head, when all about are losing theirs”? (Kippling)
And once you’re diagnosed, how do you overcome all that tazing?
Chuck’s blog on early onset Alzheimer’s is, I think, a courageous way of dealing with one such diagnosis.
What is your way of dealing with the fear of Alzheimer’s-whether it’s diagnosed or imagined?
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.
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The U.K. recently decided that Aricept and other acetylcholinesterase inhibitor drugs can be prescribed for mild Alzheimer’s cases (in addition to moderate cases. See article U.K. Reverses Stance On Alzheimer’s Drugs NICE is now recommending that three drugs known as acetylcholinesterase inhibitors—Aricept from Pfizer Inc. and Eisai Co.; Reminyl from Shire PLC; and Exelon from Novartis AG—be considered for use in patients with “mild” forms of Alzheimer’s, in addition to the patients with “moderate” forms of Alzheimer’s for whom NICE previously endorsed the drugs.). The more obvious reason is that these drugs should be getting cheaper once their patents expire, and therefore easier on the state’s prescription coverage budget. The less obvious reason is the relative ignorance Brits have regarding the sport of baseball.
I’ll explain:
First, you have to know how neurons and neurotransmitters work. Here is a short animation that shows how neurotransmitters work in the brain:
The cycle is a fantastically efficient one. Neurotransmitters are shocked into action, released into the synapse where they interact with receptors on the other side of the synapse, then swept up to make room for the next wave of neurotransmitters.
In Alzheimer’s, the favorite neurotransmitter tagetted by drug companies is acetylcholine because it is crucial for the formation of new memories. In the Alzheimer’s brain, there is an increasing shortage of acetylcholine, making it harder and harder for the brain to form new memories. The enzyme that recycles acetylcholine is acetylcholinesterase. What Aricept (an acetycholinesterase inhibitor) does is inhibit this recycling process, so the neurotransmitters hang around longer in the synapse and interact more often with memory-forming receptors.
Here is a video of a different neurotransmitter (serotonin) and its recycling inhibitor. It’s a good picture of the process that takes place with acetylcholine and acetycholinesterase inhibitors:
All of this is easier for Americans to grasp, because it can be compared to baseball: in baseball, players are stored in the dugout, called into action on the field, then recycled back into the dugout when their action is no longer called for.
Suppose that a team were to lose all but four of its players. Someone would have to block the dugout so the players wouldn’t sit back on the bench but rather take up the bat once more.
The players are the acetylcholine, the rule that sends them back into the dugout is the acetycholinesterase, and the person blocking the dugout when there is a shortage of players is the acetylcholinesterase inhibitor.
This also, by the way, illustrates why Aricept et al eventually fail: the four players get tired of playing the whole game all season long and quit.
Someone must have finally explained baseball to the Brits.
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?"
"No."
"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.
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.
Big smile.
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)
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Excellent Article Marty. A real eye opener.
“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?
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?
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.”
So maybe, just maybe the doctors should be looking at other diseases such as vitamin B12 deficiency, fluid on brain, diseases effect the brain. Maybe there are not that many people with Alzheimer’s after all.
Rose, if you want a real eye opener, read this blog: The Myth of Alzheimer’s. Conclusion: Alzheimer’s is the same thing as aging-and takes the same varied trajectories as aging.