Think the odds are stacked against you? Here is a man with no arms and no legs, but armed with faith and humor, he has succeeded as an entrepreneur and motivational speaker. A must watch!
No Arms, No Legs, No Worries.
Despite scoliosis and Parkinson’s, man, 88, stays motivated with aerobics, cycling
John Mathews can't hold himself upright when standing. He walks hunched over and has a shuffling gait due to Parkinson's. But the physical ailments do not keep him from his love of fitness. Read article.
Agatha Christy Wrote Even With Alzheimer’s
A new study appears to prove that Agatha Christy wrote mysteries even after she began suffering from Alzheimer’s. Listen to this podcast.
Former teacher just graduated from university in Ghana–aged 99.
“Education has no end,” he told CNN. “As far as your brain can work alright, your eyes can see alright, and your ears can hear alright, if you go to school you can learn.” Read this article.
Alzheimer’s man to tackle around loch canoe trip
A 77-YEAR-old man diagnosed with Alzheimer’s disease intends to undertake a marathon canoe trip around Loch Ness. Read this article.
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.
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.
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.This also showed me that validating was not my natural gift. To meet someone for whom it is, you must meet Jan Petersen. This afternoon I watched the video Jan’s Story: Love and Early-Onset Alzheimer’s again and re-discovered a true hero. Even with severe dementia, Jan knows how to seize each day and touch each person she meets. Jan’s is both a heart-wrenching and heart-warming story. Many people go through life mentally intact yet unable to see the goodness that surrounds them. Then you meet someone like Jan whose indomitable spirit sheds significance on everything and everyone she sees—regardless of her inability to name things.
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:
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.
The first thing you have to know about Mom is that she is the biggest sweetheart on the planet. She has always said “yes” to anyone who asked her for a favor or a meal or a ride or even cash. We used to berate her over some of these decisions. “Mom, you’re just enabling them to go get drunk,” or whatever. We’d rather keep our boundaries intact. Keep safe. Not Mom. She’d rather “do onto others” as Jesus wanted her to do–and let Jesus take care of punishment if the recipient abused the gift.
With that in mind, it puzzles me that these days, the word most frequently pulled out of her tiny residual vocabulary (5-10 words at present) is the word “no.”
“Mom, shall we get up?”
“Mom, isn’t this music pretty?”
“Do you want to go for a walk?”
Here’s the curious part. Her body language still says “yes.” So why the verbal “no”?
I’m thinking that this knee-jerk negation is her last recourse to individuality. Having lost most of what makes her a person, she is resorting to negation as a way to distinguish herself from others.
Think about it. “Yes” blends us into other people. It’s a unifying word. It accepts. It serves. It hugs and becomes one with the other.
“No” on the other hand, puts up a wall between the self and the other. It says, I am me and you are you and it’s going to stop there.
It’s Mom’s only way, I believe, to retain a feeling of self.
And that revelation changes how I look at the world. You wonder why some people just can’t play nice in the world arena; why they have to say “no” to constructive engagement; why they have to strap bombs around themselves and “no” themselves and other people into oblivion.
Perhaps it’s because those people feel that a “yes” will blend them into the will of the other–a will that is unacceptable to their idea of a healthy self. A “no,” they feel, is the only way they’ll be seen.
Do you see what I’m saying? The ego’s boundaries collapse under yes. “No” is the last bastion of the tormented ego.
Here’s a short section of a CNN interview of Michael J Fox done by Sanjay Gupta—about living with Parkinson’s:
“Liberating” is what Michael calls his Parkinson’s! A chance to do something significant with his life! The turning point? The diagnosis. The act of giving a name to his symptoms allowed him to take back control of his life. Wow!
I cried throughout, of course, because Dad’s Parkinson’s was nothing liberating. But the reason it was such a cage, I think, is that it went undiagnosed until the very end. His shaking was written off as “familial tremors” (like his father and brothers who likewise had hand tremors without Parkinson’s) for twenty years, so all his other symptoms—an expressionless face, shuffling gait, forward tilt, drooling, even dementia—weren’t blamed on a disease: Dad had to take the blame himself.
I’m sorry, Daddy. How freeing it would have been to know your body was beyond your control. I think it would have helped your mind to gain control over your brain.
I hope this will convince anyone out there who suspects they may have Parkinson’s to get a thorough neurological examination. Take control of your disease and don’t let it eat up the rest of your life.
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?
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.
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.
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.
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease.
Here is why I think there is an inherent problem with this guideline:
If you go the the Alzheimer’s Association website and take the interactive tour of a brain with Alzheimer’s (a fantastic tool!), you will notice that there is a general pattern to the progression of Alzheimer’s and its accompanying symptoms. Specifically, looking at slide 13 you will see that the first part of the brain to be affected by Alzheimer’s is the inner core where the hippocampus resides—that part of the brain responsible for short-term memory. From there, damage spreads outwards to the cortex of the various lobes. As the second image in slide 13 shows, the Frontal Cortex is affected in mid stages of Alzheimer’s. This area is responsible for attention, social skills and intelligence (or wit). It is associated with “personality.”
Now, if an effective drug for Alzheimer’s were to be developed, you would expect to see the least damaged areas respond first, followed by the most heavily damaged areas.
Such were the preliminary results of the clinical trial of Dimebon. In reading the various anecdotal accounts of the Dimebon trial (see Bob DeMarco’s piece on the Alzheimer’s Reading Room), the results seemed to show precisely this initial response: Alzheimer’s sufferers reported increased alertness, social skills, and wit. Here is a sample quote from the various testimonials:
The major drug companies are focusing on memory. Are they after the right target? I’ll tell you this, in weeks 6 through 18 in the Dimebon clinical trial my mother was more engaged with me, more aware of her surroundings, more interesting, and more like her “old” self then she had been in six years.
The least damaged areas of the brain were affected in the 12-week trial! Then the trial was stopped because the inner (most damaged) area of the brain showed no marked improvement.
Would it not make sense to glean from the trial that a logical reverse course of the disease was set in motion and to continue it to see if the pattern held?
Pfizer et al, could you give us another 12 weeks when studying Alzheimer’s please?!
[Note: this analysis is mine alone. It may not be true that the least affected areas would show improvement first]
Memory can be wonderful and cruel all at once.
It’s been almost a year since Dad died, and I’ve discovered that it takes a year to fully recover from the exhaustion of caregiving. It takes a year to recover fully enough to crave the chance to do it a second time over—to do it right this time.
Last Thursday was one of those gorgeous days that make your spirit soar. It was just warm enough, just breezy enough, just relaxing enough, just full enough of good plans that I wanted Dad here to enjoy it with us. I was in the middle of a supermarket parking lot when that thought came to me, and it was the beginning of a four-day breakdown.
Why can’t I be given a second chance? I’ve got all my energy back now, and I swear if I’m allowed, I’ll show Daddy all the tenderness that I had no time or energy to give him before. Why did he have to die before I recovered my ability to love him?
It was a catch-22 I battled with all weekend.
That Thursday evening I drove over the mountains to attend the licensing of a young preacher. I took advantage of the lonesome drive to listen to a book on tape my niece lent me. The title was “My Life in the Middle Ages.” It was supposed to be funny. Turns out the first two CDs were all about this guy’s father’s declining months. It was about death; about tying up all those messy loose ends.
Of course I bawled my way through that. When I couldn’t take it anymore—when I thought I’d better get my face in shape for the licensing ceremony—I popped in an Ingrid Michaelson CD. Quirky, upbeat Ingrid. Problem is, I’d never really listened to some of those songs before. About the fifth song on the CD is about the inevitability of death. “We are all snowmen, and we’re going to melt one day.”
The same message is being pounded into me over and over.
We’re all snowmen, and were are going to melt one day. It’s the norm. It’s not a devastating tragedy.
But the point of it? The point of living and dying and leaving others behind to bawls their eyes out?
Here I was, the daughter of a preacher, going to the licensing ceremony of a young, vibrant, new preacher, and I wasn’t getting it.
The point of living and dying, it slowly sunk in, is to pass on the baton. The best thing we can do is to spend ourselves living, then die and offer the lessons of our lives as rich mulch for the next generation.
It made me think of all the lessons I absorbed from Dad’s life. Like:
– Nature is awesome
– Don’t spend what you don’t have
– Prayer changes things
– God is gentle
– Invest in people on the fringe of society; they’re the ones who will remember you
It was a good weekend to mourn and know that there is good in all of this.
From now on, when mourning strikes, I will try to add to the list of lessons learned.
And I will think about how my life will have an impact after I—like all of us will—eventually melt.
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:
Deep In The Brain is a cerebral self-examination written by a philosophy professor who was riding the top of a success wave when he was diagnosed with Parkinson’s. Talk about the relationship between mind and brain! Here is one who, thanks to his training, steps outside himself to make an objective assessment of his behavior even as he battles the attachment he has to that self.
In this book, Helmut Dubiel analyses his response to the personal and social implications of his Parkinson’s disease. He does not blame or excuse. Rather, he tries to put his and other’s reactions in context of the overarching laws of social interaction.
There is pain in this book. There are lies and pity and anger and judgment. But mostly, there is acceptance of the facts of disease and an acknowledgement of man’s irrepressible will to live and to thrive.
Yesterday as I read this book to Dad, I noticed him fidgeting more than usual. I stopped and asked him what was the matter. He said, “It seems like you’re reading about me.” I explained that this was a philosophy professor writing about himself. Dad calmed back down and listened with interest. Dad doesn’t talk about his inner battles much, so this would logically be painful for him. But good. I think this was one of Professor Dubiel’s hopes–that through his honest self-examination, others would feel released from the need to hide from their disease and, in so doing, find relief.
I’ve often asked people, “Which would you prefer: to lose your body or to lose your mind?” Given that I live with one parent with Alzheimer’s and the other with Parkinson’s, this question has personal weight. In his book, Professor Dubiel clearly expresses his preference for holding onto the self despite the ostracism brought on by the physical distortions of Parkinson’s. Knowing you are being unfairly rejected is still preferable to knowing nothing at all. On the other side, in Still Alice the protagonist affirms this appreciation for the self when–in a lucid moment–she acknowledges “I didn’t meant to get this way. I miss myself.” The mind is a far greater gift than the body.
Of course, in the end, Parkinson’s takes the mind as well.
My take-away? Pray for a cure for both diseases; forgive my and others’ shortcomings; enjoy today.
John Thorndike’s The Last of His Mind is a work skinned in the devastating story of Alzheimer’s, but shows what an unexpected gift caregiving can be for a child who longs to understand the one who shaped so much of his own understanding of life and relationships.
In these pages, John Thorndike gives up the comforts of his normal life in Ohio to care for his father in the last year of his battle against Alzheimer’s. John takes this time to examine himself in the light of the two people who shaped him most—his proper, emotionally absent New England father and his passionate, dissatisfied mother. “No wonder I study my parents,” he says. “Within the compass of their lives, everything is foretold.”
More than anything, the author wants a peek at his father’s heart, but finds it impossible to reach through the shining armor that encases him. In the end, though, he finds that it’s not his father’s armor that shines, but his character. And in the end, the year of loneliness and frustration yields the sweetest of fruit: a softer, mended heart.
John Thorndike brings out the True by exposing the Fraud, and it’s contagious. I feel wholly exposed after reading this book, yet more able to forgive myself, to love Dad—imperfections and all, and to accept the inherently flawed but courageous effort we all make in loving those closest to us.
True, this book is about the beastliness of Alzheimer’s, but it should be read by anyone who hungers to know a parent and to find themselves healed in the acceptance of an imperfect knowledge.
The other night I attended an author’s reading of a first-time novel.
The main character in the novel is an immigrant computer programmer with terrible social skills trying to navigate his way around the American culture. His mistakes are endearing and a good mirror into the idiosyncrasies of American culture.
In the question and answer period of this reading, someone shot up their hand and asked if the main character suffered from Asperger’s Disease because of his mental brilliance and social ineptitude.
I think the author’s answer was something along the lines of “uh…” which mirrored my own reaction to the question. I’d smiled at the word Asperger’s and felt my stomach lurch at the word Disease. I’ve always thought of Asperger’s more as a cool color to be rather than a disease. Besides, why the need to label?
Why can’t we just accept a different package of assets and challenges in a person and enjoy their uniqueness rather than feel the need to cubbyhole folks into categories?
I just looked up the number of brain-related disorder labels and found a list of 50, among them “intermittent explosive disorder” which is basically the display of temper tantrums. Get real, folks!
What are labels & diagnoses? Something to shield other people from us as well as something to hide behind?
My recommendation for anyone suffering from excessive labeling (both giving and taking) is to read the book “You are Special” by Max Lucado. The interesting notion in this book is that positive labeling can be as harmful as negative labeling because it enslaves us to other people’s opinions. Freedom comes in checking in constantly with our Maker and knowing He loves us as we are.
Read and re-read and practice what you read.
Dare to be yourself.
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