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 […]
Well, if this isn’t the best gift to buy for someone with early stages Alzheimer’s, I don’t know what is! Probably the one symptom that scares Alzheimer’s victims the most–and turns them into instant hermits–is geographic memory loss. Going out for a walk or a drive and suddenly not knowing where you are or how […]
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 […]
The Alzheimer’s Research Paradigm
If you’ve every studied philosophy of science, you’ll recognize that current research in the field of Alzheimer’s Disease is battling paradigms. The funny thing is, the Alzheimer’s field hasn’t even reached the level of robust theory, yet there is strife in the ranks of researchers fighting over the direction inquiry should take:
“Kill the amyloid plaque!”
“No, viva le beta amyloid!”
“Forget amyloid. It takes tau to tangle.”
“Ha! The biomarker emperor has no clothes!”
“Wait. Isn’t it all about insulin resistance?”
“Nix all the above. Just get quality sleep, and you’ll be fine.”
If you think this is funny, these basic statistics will sober you up:
* As of 2010, there are 5.4 million people in the US with Alzheimer’s
* Almost half the people over 85 have Alzheimer’s
* When the baby boomers come of Alzheimer’s age, the costs of care for this disease alone will cripple Medicare and Medicaid
* Federal funding for research into a cure is dropping fast
* YOU will be paying for either your own care or for that of a loved one if a cure is not found. And YOU will either be grossly neglected when this disease hits you, or you will die the slow death of stress from caregiving for someone else.
Bottom line: research into Alzheimer’s—its cause(s), treatment, and cure—is alarmingly urgent and terribly underfunded.
There are plenty of people out there who believe we shouldn’t put money into research at all, because so far nothing has been found to stay the course of “Alzheimer’s” dementia, and the whole drug industry is just a ploy to line the pockets of the pharmaceutical fat cats. If you’re in that group, you can stop reading this now. If, however, you would really like to see your Mom or Dad or Yourself able to have a meaningful conversation with your loved ones and know whom you’re talking to—hopefully for the rest of your life—read on, because the question isn’t whether or not to research. The question is where do we put our research dollars?
Not a simple answer when you consider that the reigning paradigm for Alzheimer’s research is serious question.
Let me explain with recent findings from my own readings:
A couple weeks ago I attended a Cure Alzheimer’s Fund webinar presented by Dr. Rudy Tanzi (of Massachusetts General’s Institute for Neurodegenerative Disease) on Alzheimer’s research and drug development.
Beta Amyloid: Clues From Our Genes
Dr. Tanzi’s group is in the “clues from our genes” pool (looking at the genes as a starting point rather than, say, looking at diet first). The dominant belief in this pool up until recently is that beta amyloid plaque accumulation in the brain, followed always by tau tangles, are the two main biomarkers for Alzheimer’s Disease. That is, where there is Alzheimer’s, there is an overabundance of beta amyloid plaque and destruction caused by tau in the brain. Also, a higher load of plaque correlates with a higher degree of dementia (see slide from webinar). Plus, as this accumulation progresses and moves to different parts of the brain, there is a parallel manifestation of symptoms.
The connection seems pretty obvious. And Dr. Tanzi certainly has the credentials: back in the 80’s when he was studying Down’s Syndrome, he realized they had isolated the gene responsible for amyloid “plaque” deposits in the brain, and—given that all Down’s Syndrome sufferers end up with Alzheimer’s—thought to make a link between this gene and other cases of Alzheimer’s. From there it was one success after another, with Dr. Tanzi participating in the discovery of three of the four known gene mutations causing early-onset Alzheimer’s (these are the genes that guarantee you will get Alzheimer’s). Granted, early-onset AD accounts for only 5% of Alzheimer’s cases, but it does give weight to the conviction that Alzheimer’s has a genetic link. More recent studies looking at family history suggest that up to 80% of Alzheimer’s cases are genetically influenced (see slide from Tanzi’s presentation).
The presentation is convincing enough until you start reading the commentary in the field and start learning that current direction of research into the causes of Alzheimer’s is highly questioned.
Researchers coming on the scene today, for example, would argue that the plaque theory is circular reasoning. You can’t say that plaque leads to Alzheimer’s if you first define Alzheimer’s as “dementia with plaque.” And when your theory states that plaque accumulation leads to Alzheimer’s, the automatic null hypothesis is that where there is plaque (in copious amounts) you will always find dementia, and when plaque is cleared, dementia will go away.
But this has not born out. It is now known that “roughly one-third of all elderly adults have such plaques in their brains yet function normally.” It has also been proven that the elimination of beta amyloid plaque (achieved by the “Alzheimer’s vaccine”) does not cure dementia.
Thus the paradigm shake-up. Why continue with the biomarker research when the facts don’t bear an airtight connection? Is the “clues from our genes” group too heavily invested financially and psychologically in this line of research (as some suggest) to give it up as dead?
Dr. Tanzi responds to these fears in his recent presentation. He didn’t use the word per se, but nuance was the main come-back. All theories undergo refinement, and this plaque-causes-dementia theory is no exception. Looking at the genes may have lead to wrong conclusions in the past, but there are still some pretty interesting clues to follow going forward.
Here is a crude rendition of the protein-level pathology in Alzheimer’s:
Beta amyloid (Aβ) is cut off from its precursor protein; Aβ links to other ab in small clusters; Aβ kills nerve synapses; Aβ accumulates into plaques
For the past twenty years, research has focused on improving the symptoms of dementia by eliminating the final clusters of beta amyloid (plaques). Looking at the little diagram above, different drugs targeted the beta amyloid at different points on the linear progression toward plaque: Flurizan targeted the process that snipped the Aβ off its precursor protein; Alzemed tried to block the aggregation of Aβ; Dimebon was designed to protect the neurons from Aβ; one drug successfully immunized the brain against Aβ (resulting in clearance of plaque from the brain, inflammation in the brain, and progressive dementia); and finally, drugs were developed (Aricept and Namenda) to act at the symptomatic level.
None has had any significant effect on the brain’s function in memory tests.
Tanzi’s response? Perhaps the reason drug trials fail is that the potency of the drug is off—either too weak or too strong—and funding for a subsequent trial is cut off. Or perhaps researchers need to stare at the diagram a little longer and find out whether beta amyloid needs to be left to do some mission, then cleared before it wreaks havoc on the synapses.
Which is exactly what happened with Dr. Tanzi—a little stroll through the lab, a light-bulb moment, and Tanzi discovers that beta amyloid kills bacteria and yeast like nobody’s business. Beta amyloid is a good guy? The plaques themselves are just “a field of bullets” left over from some major battle?
Definitely worth an investigation. A new direction.
To Fund Or Not to Fund
So it turns out that looking at clues from the genes is not a paralyzing avenue of research after all. Is the paradigm really dead, or just needing refinement? In the new direction of Alzheimer’s research, Dr. Tanzi’s findings have lead to a more recent drug (PBT2) that takes the “antibiotic” role of beta amyloid into account as it tries to clear its toxic leftovers. Do we pull the plug on funding just when the story is getting really interesting?
The competition out there is fierce. You would think from some of the stinging accusations aimed at the “old school” research that funding for groups such as Tanzi’s should be questioned. Yet, as the webinar pointed out, “the vast majority of our knowledge about AD and AD drug discovery has been based on studies of the four known AD genes over the past two decades.” That’s old school success.
On the down side, “about 70% of AD genetics is unexplained by the four known AD genes.” On the further down side, it’s going to take A LOT of funding to find the genetic culprits for the rest of Alzheimer’s cases. And genetics is still only one of several approaches to studying this disease! (Besides, paradigms don’t die until a better one supersedes it, and there is no airtight theory out there yet).
Do we put all our eggs in one basket? What if there aren’t enough eggs to spread around to the different baskets?
Frankly, I don’t know the answer to this question.
There are a couple good reasons I think the Cure Alzheimer’s Fund group is worth supporting, though. One reason is the Cure Alzheimer’s Fund website itself. The Internet has plenty of faults, but it also has the advantage of open criticism. If you look at the comments sections of one of the papers put out by Tanzi’s group on the Alzheimer’s Forum, you’ll see an open debate. It’s free collaboration. It’s crowdsourcing at its best. I think it multiplies the value of your funding dollar.
Another reason is that I’ve suspected my own mother’s caseStay tuned for a post on this topic to be of possible bacterial/fungal origin and am dying to see what this group finds in their new line of research. The only thing I fear is the psychological barrier to this new approach.
A Taboo Research Project?
To be specific: the two agents being considered by Tanzi’s group as possible aggressors in the beta amyloid battle are Chlamydia and Candida Albicans. But looking at Candida Albicans as a possible cause of anything is TABOO in mainstream medicine. Just browse the comments section of a recent article in the New York Times about Candida Albicans, and you’ll see what I mean.
Will Tanzi’s group have the courage to fight all the enemies of research at the same time: tainted motives (the desire for personal glory), psychological entrapment (continuing in a line of research simply because it’s been going on for so long), and mainstream opinion about what is acceptable research (we do not look at X)?
I guess it’s going to take a lot of money to find out. Which brings us back to the basket issue.
Do we have to duplicate Alzheimer’s research at the Federal and State levels? The state of Texas, for example (being one of the top three states that will go broke paying for Alzheimer’s care in the future), is spreading its research egg money into several baskets:
* Prevention and Brain Health
* Disease Management
Why repeat this with every state, plus private groups on the side? Is there a way to get more collaboration between research groups? The well of needed funding is infinitely deep, so why are we digging multiple wells?
I guess part of the answer is that individual motivation for research (even if it is for personal glory) is the strongest kind you can find, and therefore the best engine for finding a cure. And likewise, education plus individual conviction will drive donations. There is certainly enough information available at one’s fingertips to give no one who is interested in a cure an excuse to sit on the sidelines!
So what will you do?
Because where there is a will, there will be a way to end the increasingly long goodbye.
For further reference:
Beta-Amyloid: An Antibiotic? (with a slew of interesting comments)
Alzheimer’s Brain Tangles Offer Clue To Worsening
Alzheimer’s Disease: No End to Dementia
New Potential Cause of Alzheimer’s Disease Detected
Alzheimer’s Scary Link to Diabetes
Follow the Alzheimer’s Breakthrough Ride journal
An video report on several intriguing theories of Alzheimer’s.
The topic of fasting and Alzheimer’s has been on my mind lately because, well, Alzheimer’s is always on my mind and because recently a friend of mine got on this diet where you’re supposed to eat six small meals a day to trick your body into not storing fat.
Since intermittent fasting has been shown to slow body and brain aging, I wonder (the fat part aside) what this continual eating is doing to the brain.
From Psychology Today (2003):
It has been known for years that sharply restricting the calorie intake of laboratory animals increases their life span. But a new study by researchers from the National Institute on Aging found
e all know, even without reading research papers, that music has emotional benefit: it can excite and calm and induce a wonderfully cathartic weeping session. This applies whether you’re healthy or sick; whether you have Parkinson’s or autism or Alzheimer’s.
But studies have found that music can also be of cognitive benefit: it helps people remember things better.
What exactly does this mean, and what specifically does it mean for an Alzheimer’s patient? Does it mean that if you play the oldies station in the background all the time, your Mom will wake up one day and remember everything again?
Let’s look at the evidence:
First of all, "music" is a pretty general term. Are we talking about singing? Playing a guitar? Listening to Mozart? Listening to Bobby McFerrin’s improvisational jazz? Believe it or not, these are all different things.
According to a study reported by Time Magazine,("Music on the Brain")
Different networks of neurons are activated [in the brain], depending on whether a person is listening to music or playing an instrument, and whether or not the music involves lyrics.
In another study, quoted in Neuroscience for Kids,
researchers have recorded neuronal activity from the temporal lobe of patients undergoing brain surgery for epilepsy. During this study, awake patients heard either a song by Mozart, a folk song or the theme from "Miami Vice". These different kinds of music had different effects on the neurons in the temporal lobe.
Also, from Time'“Music on the Brain”
Experimental Audiology in Germany has shown that intensive practice of an instrument leads to discernible enlargement of parts of the cerebral cortex, the layer of gray matter most closely associated with higher brain function.
As you can see, different music affects different parts of the normal brain in different ways.
People are always studying the music-brain connection, trying to understand the mystery of it. There was a particular study done in 1993 that tried to see if music affected memory. The researchers used a song by Mozart for their experiment, and their results seemed to show that this composer’s music improved test-taking. This became widely known as The Mozart Effect, and people started playing Mozart to their unborn babies thinking it would give them a head start in learning.
Though later studies failed to duplicate the Mozart Effect (perhaps the only real effect is that Mozart helps relax the body right before a test), that original research sparked further research into music-as-memory-aid. A recent study, for example, found that Alzheimer’s patients can remember new information if it is sung to them much better than if it is spoken (as opposed to healthy people who can remember it equally well when sung as opposed to spoken).
We also know without reading studies that music helps trigger old memories. For example, when I hear the song "Dust in the Wind," I am immediately transported back to our family van as we drove across the country in 1977. I remember my oldest sister introducing this song to me, and how it resonated with the angst of my teenage years, etc. A whole cascade of memories brought on by a single song.
In a study reported by the Telegraph in 2009, researchers found that this recall effect is due to the fact that music is processed in the same area of the brain that forms vivid memories. They furthermore found that such memories appear to be immune to the ravages of Alzheimer’s. And this could lead to a unique kind of therapy:
Because memory for autobiographically important music seems to be spared in people with Alzheimer’s disease, …making a "soundtrack of someone’s life" before their mind is too damaged, and playing it back to them could help form a resistance to the disease.
Love the idea! Plus I have a variation on this idea from watching this next video of Bobby McFerrin (at a conference called "Notes and Neurons"), and from observing Mom as I play the piano. First, here’s Bobby:
What Bobby is doing here is getting the mind to go in a familiar direction (the pentatonic scale), then leaving an auditory blank and letting the mind fill it in. I mean, aside from jumping around, that's what he's doing. He’s giving the mind a puzzle to solve. He’s making the mind work. And working the mind is better than not working the mind if you want to keep it.
The next part of my idea came from playing the piano for Mom and watching her reaction. You should know Mom hasn’t spoken but a few words in a couple years, and she no longer sings intelligible tunes. You should also know that I don't play the piano. I used to when I was seven, but now my playing is reduced to guessing the notes with my right hand. I can play fast enough for the tune to be recognizable. Barely. Fortunately for Mom, the tune is always a hymn—something she is very familiar with. Unfortunately for Mom, I mangle the tune. And that's where the puzzle comes in.
See, when my finger's can't find the right note, Mom gets exasperated and sings it out loud to help me find the dang thing. I'm even wondering if this puzzle-solving exercise is a factor in Mom's recent awakening.
So here is my variation on the soundtrack idea. Try this exercise (for an Alzheimer’s patient) with the following video clip:
Play it once. It will probably be familiar to the listener already, but there are enough repetitions in this piece that parts of it will quickly become familiar if they aren’t already. Play the video again, but pause the video every so often. There are a ton of repeated theme snippets. Pause before a theme is repeated and see if the listener is prompted to supply the missing piece. If they do, you've got a good puzzle to use.
Then, if you do this with that "Life Playlist", you should be able to double the benefit in fighting that Alzheimer’s monster.
Music and Caregiving—Pandora to the Rescue
Alzheimer’s and Music: Stimulating the Brain into Action
Posit Science Blog, Your Brain on Jazz
American Music Conference, Music and the Brain
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!’
After writing my last post regarding the stress of caregiving, I had to drive somewhere, and in the course of the short trip, I caught a clip of a Haydn symphony on the radio. I don’t know how, but there are sections in there that make me feel as though this exhausted, shriveling heart of mine is actually quite expansive and able not only to cope, but to bring beauty out of the brokenness around me. You know how sometimes you see a scene or a photograph that makes you certain that the universe is true and right and good? Well, music does that, but with thrice the emotion. Music can rewire a frazzled or finished outlook into one of hope. And hope can take you a looooooong way down a very dark road.
All to say that music—in addition to being a fantastic tool for treating Alzheimer's—is a very inexpensive way to get your groove back when you’re done in from caregiving. Or from living a regular life-is-pain-highness kind of life.
To prove this, I'm giving you a little tool in this post that some people may not know about. The tool is called Pandora—an internet service that lets you create your own radio station online.
The extra cool thing about this service is that you can create multiple radio stations, all with different moods—colored by different genres or artists—to suit your changing needs. Sometimes I don't even know what my need is or what it is that will trigger a brighter outlook, so having multiple "moods" to choose from is very useful.
Cutting to the chase, here are four stations I created to get you started. Click on any one of them and follow instructions to log into Pandora. From there, you can tweak the station by "adding variety" (a specific music piece or musician) to the station. You can also "thumbs up" or "thumbs down" any piece that you hear, and the station will remember to pick similar music or not to play that piece in the future. Talk about tailored just for you!
So here goes—four different flavors for your listening pleasure:
Jazz. You know, the good stuff with Stan Getz and Louis Armstrong and Bobby McFerrin and Michael Buble…
This is a fusion of old hymns and contemporary Christian pop. Nice, especially for Sunday mornings.
My personal favorite: spicy Latin mix. Makes you want to jiggle and dance and go crazy! A great stress-reliever.
Classical is music to transport the soul.
A couple more tips: if you want to play this music off your sound system without leaving the kitchen table, you can buy a $4 wireless FM transmitter and send the station to your main tuner. You can also "send the station" to the radio that sits on your mother's side table in the bedroom while you’re working on the laptop in the kitchen. Just a whole lot of things you can do with Pandora!
Do have fun, and come back and post a station of your own creation if you dare!
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.
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.
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.
Like the title of this blog says, there are things to be learned from all kinds of dementias. Here is a particularly astounding thing to learn: severe autism does not necessarily mean the sufferer is mentally retarded. This video will shock you into looking beyond the outward appearance of those who cannot communicate and into the soul.
Sometimes I wonder how much like this girl my mother is. How much does she really know about what’s going on around her?
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?
I took Dad for a walk tonight. It wasn’t a long walk. Dad was tired and didn’t really want to go. But he acquiesced to my prompting, and we walked to the end of the 50-yard driveway.
The whole time we walked, I supported Dad’s right arm. And the whole time we walked, Dad’s arm shook violently. By the time we got back, my arm was buzzed and aching.
Then it occurred to me that if Dad’s energy gets passed onto me in this bad way, perhaps we could harvest the energy in a good way. I suggested to him that we design something like the soccer ball recently invented by those Harvard girls—you know, the ball that stores the energy of a game’s worth of kicking into a battery that can then be used to light up the Third World.
But hey, why not harvest the energy generated by Parkinson’s tremors? Maybe we could even wire the energy back into the brain for deep brain stimulation therapy.
There’s got to be an up side to the down side of this energy-depleting disease!
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.
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