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.

The other day I was having fun designing a blog for my pregnant niece, and it made me think a lot about operating systems and web platforms and hardware and software and the whole process of creativity and, as always, Alzheimer’s and Parkinson’s.
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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Mom has been pretty much without language for five years now. Three years ago she would occasionally call out “Ken!” (Dad’s name) once or twice a week, but other than that, her speech was a non-stop running chatter of “geri geri geri fica fica fica mao mao” and the like. Mostly two syllable experiments in sound. Ah. Also, occasionally-and as far back as 2 1/2 years ago, she would respond to the declaration “I love you” with “too too too too.” We wrapped ourselves in that response-a definite sign of comprehension and reciprocity.
Today we don’t even get the “too too too.” But we do get eye contact and a nod, which is just as good as sign of comprehension.
For all the times I’ve felt a thrill at the connection still possible with Mom via language, I didn’t have a picture of how thrilling it was for her to know that she knew something until one day-about 18 months ago-when I took her to the bathroom. We’d been having a very hard time getting Mom to urinate. She’d hold it for eight, twelve,  eighteen hours. We massaged her, waited in the bathroom with her, gave her tons of liquid in hopes of getting her to release the contents of her bladder-to no avail.
One day I sat her down and begged her to go. “Mom, go potty. Let it out. Just let it out, ok?” She leaned over and made a shooing motion with her hand and repeated, “out?” I said, “yes, let it out.” She looked at the door, repeated the shooing motion (toward the door) and said “out” with the most excitement I’d seen from her in a long time. She was ecstatic at the small bit of comprehension she possessed at that moment. She knew the word “out!” She knew the word-it’s meaning-and it gave her significance.
I suppose it was akin to the feeling Helen Keller had at the comprehension of the word “water.” It opened up the world around her; gave her instant availability to connection with other human beings; empowered her to have a “self.”
I ache for Mom and her loss of language and all that has gone with it. But thanks to her, I am richer now that I know the power I possess with a vocabulary. Comprehension via language is such a huge gift (sorry to disagree, post-modernists)!
Now, if I can just stall the loss I already feel creeping in…

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.

In my research on Alzheimer’s and glucose metabolism, I ran across a fascinating article about the brain’s default system-that part of the brain that is affected in Alzheimer’s Disease; that part of the brain that hogs glucose like no other part of the brain.

In The Secret Life of the Brain, Douglas Fox brings together research on the default network beginning with Dr. Sokoloff who, in his attempt to find out why the brain uses so much glucose (20% of the body’s supply), discovered that the brain uses as much energy while “at rest” as it does while performing tasks.

Later, a neuroscientist named Marcus Reichle discovered a kind of “brain within the brain” that works its butt off when it’s supposedly in “idle mode.”

Raichle and Shulman published a paper in 2001 suggesting that they had stumbled onto a previously unrecognised “default mode” - a sort of internal game of solitaire which the brain turns to when unoccupied and sets aside when called on to do something else. This brain activity occurred largely in a cluster of regions arching through the midline of the brain, from front to back, which Raichle and Shulman dubbed the default network (Proceedings of the National Academy of Sciences, vol 98, p 676).

It was found that some parts of this network devoured 30 per cent more calories, gram for gram, than nearly any other area of the brain. Since part of this default system is in constant communication with the hippocampus (which records every day memories), Reichler speculated that its function was to sort, evaluate, and categorize memories in such a way that would allow the brain to use the past as an “inner rehearsal” for considering future actions and choices.

Brilliant. Just when you think daydreaming is a waste of time, it turns out it’s crucial for living.

Raichle now believes that the default network is involved, selectively storing and updating memories based on their importance from a personal perspective - whether they’re good, threatening, emotionally painful, and so on. To prevent a backlog of unstored memories building up, the network returns to its duties whenever it can.

In support of this idea, Raichle points out that the default network constantly chatters with the hippocampus. It also devours huge amounts of glucose, way out of proportion to the amount of oxygen it uses. Raichle believes that rather than burning this extra glucose for energy it uses it as a raw material for making the amino acids and neurotransmitters it needs to build and maintain synapses, the very stuff of memory. “It’s in those connections where most of the cost of running the brain is,” says Raichle.

Reichler later attented a lecture by an Alzheimer’s specialist and was shown a map of beta amyloid plaques (those clumps found in Alzheimer’s autopsies) in the brain. The picture looked exactly like the default network!

Raichle, Greicius and Buckner have since found that the default network’s pattern of activity is disrupted in patients with Alzheimer’s disease. They have also begun to monitor default network activity in people with mild memory problems to see if they can learn to predict who will go on to develop Alzheimer’s. Half of people with memory problems go on to develop the disease, but which half? “Can we use what we’ve learned to provide insight into who’s at risk for Alzheimer’s?” says Buckner.

That got me thinking…

Maybe one reason we lose memories is that our lifestyle doesn’t allow for much rich idle time like when we would sit on the porch sipping sweet tea on a hot afternoon. So the default network can never do its work of sorting and categorizing memories, and consequently we lose them.

And if this is a problem with the present generation, how much moreso for the upcoming generation. We are consumed with having something to pay attention to all the time. Just look at TV screens these days: not only do you have the main screen, but there’s the pop-up ad for the “next show,” a caption for what’s going on on the screen, and a ticker at the bottom of the screen for what’s happening elsewhere.

Maybe part of the solution for AD is the “quiet space” to be incorporated in school, at work, and at home. Hmm, come to think of it, I offered this very solution in a comment to an article in Time Magazine back in 09 (Turn Off, Tune In, Log Out):

I predict that the twitterification of our society is going to lead to an exponential increase in early-onset Alzheimer’s. We’re increasing the rate of input to our brains and decreasing the time for processing information, and our brains are going to revolt. That, in turn, will lead to the next big industry: de-twitterification rooms where you can sit alone and unconnected, with nothing but a giant aquarium and a beanbag. -Marty

SEE ALSO Language and the Brain’s Default Network in Alzheimer’s

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.

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.

In continuation of Alzheimer’s and Glucose Metabolism: The Niacinamide Experiment Part 1

This post is simply me mulling over things I’ve read in light of Mom’s dementia and my own experience with stress and mental short-circuiting, with the conclusion that in some cases of Alzheimer’s, intestinal flora could be greatly to blame. My conclusion also points to the possible way niacinamide could function in correcting one of the malfunctions in the gut-brain axis.

The Gut-Brain Axis

In-depth studies of human intestinal microbes are just now coming into maturity. The Human Microbiome Project is fueled by the increasing belief that the population of bacteria and yeasts that inhabit the human digestive tract is greatly responsible for how the body and mind develop and how they continue to function or malfunction as we tinker with the balance of flora in our gut:

Visionaries are hoping for cures for some forms of obesity and anorexia along with various forms of cancer, asthma, multiple sclerosis, Alzheimer’s, lupus, and most of the major psychiatric diseases. In the future, Blaser [of the infectious-disease research lab at New York University] says, pediatricians could help prevent these diseases by infecting babies with a starter kit of friendly bacteria. “Bottom line, humans and our fellow animals have been colonized by microbes for a very long time, going back a billion years. The microbes that we carry have been selected because they are helpful to us. They participate in human physiology. They are a compartment of the body, like the liver or the heart.” (1)

When the BP oil spill happened in the Gulf of Mexico, we were all
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I found this short documentary film yesterday while browsing another blog about Alzheimer’s. It’s in French with English subtitles and you can watch it for one euro online. Worth the euro and then some (you can click on the picture to go to the website). The film is done by the son of an artist with Alzheimer’s, and the documentary marries his own artistic and filial sensitivity well.
As an artist whose artistic mother also has Alzheimer’s, this movie hit home for me. It was like watching my own mother lose all her nouns, then her knowledge of interpreting nouns on a canvas, and finally her knowledge of self.
In this film, the mother’s sorrow and fear are mitigated by the son’s desire to hang out with her. I only hope his desire lasted beyond the making of the film. For the sake of all those with Alzheimer’s, I hope love lasts beyond the time the disease is an interesting artistic or scientific curiosity. I hope it lasts beyond the time a diseased person has anything at all to offer.

This past week has been a little brutal on my ego. My fictitious self (the me I hold in high regard) has seen its reflection in various external realities and has taken a mortal blow.
At least I hope it has.
You see, I’ve had to acknowledge all in one breath that I’m not as clever as I thought I was; I’m not all that kind or thoughtful of others; my conversation skills have dulled; and my hair isn’t really red (all this self-revelation is partly due to reading Crazy Love—a book that spoons out truth about the self in a cod-liver-oil kind of way: nasty; painful; healing).
I’ve been thinking a lot about my hair in particular, perhaps as a metaphor for all the other traits I have to face up to in myself. My hair—which appears rich and red and full to others—is actually flimsy and almost entirely white. If you look close enough and run your fingers through the root system, the truth is quite apparent: I’m somewhere between grizzly gray and snow white. And as metaphor, I’m thinking it’s time to go white once and for all. It’s time to stop covering up the truth.
Just one thing holds me back: the stigma of white. No, not that elegant, brilliant white, but the mousy salt-and-pepper white. It’s terrifyingly old. I know the difference it would make at the supermarket, at the realtor’s office, at a job interview. I’m young; I should not have to place myself in the old category just yet. Lushious red gives you youth and authority. Mousy gray, and it’s an uphill battle to convince others you can still think. It’s ridiculous that pigment can make the world go ’round, but there you have it.
I know you’re wondering why I’m talking about hair in a blog about dementia, but you’ve probably sensed the connection. Aging has enormous stigma in our culture, and everything in us resists revealing anything that might indicate we are aging. Particularly for those of us who are aging prematurely.
My struggle with hair has atuned me to the struggle in the early-onset Alzheimer’s community. I follow a group on Facebook called Memory People comprised of people of all ages who have been diagnosed with some kind of dementia, their caregivers, and other supporting cast. Some members are open about their dignoses and are brave enough to face public scrutiny; others accept their diagnoses but keep it somewhat private; and still others straddle the cover-up fence: should they reveal something that isn’t fully blown yet but could have as devastating results as if it was? All of them long to live truthfully, but all also know the stigma of dementia and the costs incurred in making their mental status known. As with pigment, we are valued for our synaptic connections. Why would anyone want to expose their deficits and risk rejection?
It makes my stomach turn. What kind of society have we become? When are we going to change the way we value each other? When are we going to free ourselves from the layers of untruth that we spend a lifetime building up? When are we going to trade all our lies in for Truth and finally be set free?

As near as I can figure, these are the five stages of elder caregiving that correspond to the Kubler-Ross states of grief:

1. DELUSION. This is where you have boundless energy and think two lives are possible: one with you as caregiver, and one with you as successful entrepreneur.

2. FRUSTRATION. This is where you realize you have been delusional and have to make a choice between the two yous. The results are tress and guilt. Stress because your intentions are still lofty, but your body is getting tired. And guilt because you know you have to give up your own agenda, but want to keep it.

3. ANGER. This stage starts with resentment. You may start thinking part of what’s going on is on purpose—that your loved one is intentionally “pretending” some of the sickness. Or you think they’re not trying hard enough to cooperate with your care. You are in constant correction mode here, and getting angrier because your [barely] loved one keeps repeating the same frustrating behaviors (see Elder Rage).

4. DESPAIR. You finally get it that it’s not their fault. You accept that the disease is controlling your loved one and getting worse. You stop blaming them, and instead heap all the blame on yourself because you still think you ought to gain control over this caregiving business but can’t. Along with despair you have increased guilt and exhaustion.

5. RELEASE. In this stage you finally give up control. You realize you cannot do this entirely by yourself. You delegate care (maybe for a day or two of day care, maybe institutionalization). The result is considerably less stress; even joy; and certainly wisdom.

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.

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.
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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?”
“No.”
“Mom, isn’t this music pretty?”
“No.”
“Do you want to go for a walk?”
“No.”

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.

Trying to follow Alzheimer’s research sometimes feels like walking through an Escher exhibit: the contradictions can border on the absurd.
Take the new findings on SIRT1 and its relation to Alzheimer’s. Research after research shows that SIRT1 apparently protects against Alzheimer’s:

25 July 2010. The sirtuin protein SIRT1 is emerging as an important player in learning and memory, and may have potential as a therapeutic target in Alzheimer disease. Fresh on the heels of a July 11 Nature paper that demonstrated a crucial role for SIRT1 in memory (see ARF related news story on Gao et al., 2010), two new papers add to the growing body of evidence that SIRT1 helps keep brains healthy. In a paper appearing July 21 in the Journal of Neuroscience, researchers led by Valter Longo at the University of Southern California, Los Angeles, show that a SIRT1 knockout mouse has numerous defects in learning and memory. This finding implies that SIRT1 could have a protective role in AD, and indeed, in a July 23 Cell paper, researchers led by Leonard Guarente at the Massachusetts Institute of Technology, Cambridge, report that overexpression of SIRT1 can decrease Aβ production and the number of amyloid plaques in a mouse model of AD.

You’d think, then, that more SIRT1 is better for Alzheimer’s and less is worse. But:

Michán and colleagues also examined a transgenic mouse that overexpressed SIRT1 16-fold in the brain. On this normal mouse background, the authors found that this massive SIRT1 overexpression conferred no improvements in learning or memory, and that synaptic function was unchanged except for a slight increase in neuronal excitability.

And though less is worse, vitamin B3 in the form of niacinamide has been shown to “cure” Alzheimer’s in mice by decreasing the expression of SIRT1: Nicotinamide Restores Cognition in Alzheimer’s Disease Transgenic Mice via a Mechanism Involving Sirtuin Inhibition and Selective Reduction of Thr231-PhosphotauWe evaluated the efficacy of nicotinamide, a competitive inhibitor of the sirtuins or class III NAD+-dependent HDACs in 3xTg-AD mice, and found that it restored cognitive deficits associated with pathology. Nicotinamide selectively reduces a specific phospho-species of tau (Thr231) that is associated with microtubule depolymerization, in a manner similar to inhibition of SirT1. Nicotinamide also dramatically increased acetylated -tubulin, a primary substrate of SirT2, and MAP2c, both of which are linked to increased microtubule stability. .

When asked about this contradiction, Dr. Greene, one of the researchers on this paper says,

You are correct - there are contradictions between the role of Sirt1 in AD. Regardless of these, nicotinamide has good effects in the preclinical models, and has been shown to now be effective for other neurodegenerative diseases as well. Sirt1 may be beneficial at some stages of the disease, and not others - we cannot [reconcile] these differences at this stage, but our research says that nicotinamide is highly effective in preclinical models and that inhibition of Sirt1 plays a role in these effects.

Say, what?

My mind wants to hyperventilate with the contradictions, but then I remember the story of the three blind men describing an elephant and realize the contradiction exists only because we do not yet fully understand.

And that’s what drives research onward.

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