Tuesday, October 21, 2008

This Is Your Brain On Alzheimer's, Part 2

I recommend four short, superbly designed, videos titled A Quick Look at Alzheimer's: Four Pocket Films. Narrator David Hyde Pierce, filmmaker David Shenk, and illustrator Jossie Malis walk you through an introduction to the illness.

This wonderful series can be downloaded from/viewed at  www.aboutalz.org.

This Is Your Brain On Alzheimer's

Here at the Fremont Street Center for Healthy Aging, we have concentrated so much on researching the care management of the illness that we have neglected public outreach. Luckily we are not the only people grappling with the impact of this degenerative disease. New resources on the web give lots of information about the actual mechanism within the brain which causes the loss of ability. 

An interactive tour of the brain, illustrating the progression of Alzheimer's, can be found at 

Take A Look

The August 2008 issue of Discover Magazine, a side project run by  Sarah R. of Fremont Street's sister institution, the Morningside Heights Health & Well Being Project, contained this photo of an A-beta peptide fibril. This is the peptide which, when found in the brain, provides positive proof of Alzheimers.

Community Mental Health

Mother's cognitive health is failing. By paying attention to her physical and psychological needs, and practicing full acceptance of her illness, we have been able to keep her daily life as routine and recognizable as possible even as she progresses through the downward spiral of Alzheimers. But we haven't been able to stem the tide of the illness itself.

All caregivers report that Mother is losing the ability to cooperate with them as they perform for her and with her the daily tasks of self care. Everything is harder for her to do. I have seen her have trouble figuring out how to climb into bed. Her illness has removed parts of her brain with a bulldozer.

From my perspective, she seems to be gravitating toward spending more and more time sleeping or inert. But there is a time period every day where she is alert and active. Between lunch and dinner, she moves around the house, moving things around and touching everything.
During this period she will agree to go for, and will sometimes initiate, walks around the block. She will start art projects, where she folds and rips paper. She will initiate conversations. Conversations with Mother are mostly guesswork on the part of her conversational partner, but she will occasionally make herself completely clear.

The other night as I was putting her to bed, she commented that her caregivers were not there. I explained that one of her caregivers would be back in the morning. She said "Where did you find them?", a perfectly logical question, and one I would have expected her to ask, before she lost so much intellectual ability to Alzheimers.

We have had a straight across trade, Mother and myself. I accepted that she needed help. In exchange, she accepted that she needed help. I supplied the caregivers. She accepted them.  We had to work together  & we did. 

Mother's cooperation with the caregivers made it possible for Dennis and me to feel a sense of progress, even as her cognitive health declined. She was eating better, getting more exercise, interacting with people who cared about her well being all day long. By many of the most basic standards of health, she was doing well. 

But as her brain shuts down, it is harder and harder for her to cooperate. This is the final outcome of the illness: total isolation. The body is OK, the social being is intact, but the brain is gone. You are still alive, but you can't help yourself. 

In Mother's case, we are trying to forestall the final chapter of Alzheimers by providing her with enough support so that she is only fighting her illness, not fighting her illness and ostracism and social isolation and the resulting depression and anxiety and despair.

The learning curve for this approach was in the years I have spent accompanying my sisters who have schizophrenia, a similarly specific illness which targets the brain, but leaves the body and the social being intact. Like Alzheimers, schizophrenia has no cure. You learn to handle the illness. You can't eliminate it.

In the most understandable impulse on earth - the urge for self preservation -  people instinctively go for what is impossible: the elimination of schizophrenia, and the elimination of Alzheimers. Unable to eliminate the illnesses, we achieve this goal by eliminating from our lives people who suffer from these illnesses.

Community mental health puts ill people right in the middle of well people. It does this in the name of health. I know very well that most people do not regard their health as being improved by the presence in their daily lives of someone with an incurable illness which has targeted their brain. I have watched my sisters struggle against isolation, and now my mother.

But in the long run, the communities in which my sisters live, and the community (the block) on which Mother lives, experiences greater health from the presence of ill members. If I see the most vulnerable members of my community being cared for on a daily basis, I am better off than if I live in a community where I am told, and I clearly see, that all mentally ill people are viewed as undeserving of help. In community A, I know that if I became mentally ill I would be cared for. In community B, I know, with equal certainty, that if I became mentally ill, I would be consigned to care for myself, and my own diminished capacity would be the measure of my health care. 

When we take mother for walks down the block now, we pass people who have known her for decades. Their faces register pain. The sight of Mother pains them. 

Some can handle the pain, and greet her. Others retreat to the fantasy world of "the way I wish things were" and go by without showing any sign of recognition. Yes, it would be tidier if Mother disappeared from the block and was being cared for someplace no one ever saw her. And in the case of Alzheimers, it is reasonable to expect that this "other place" would be doing a good job. But the neighbors on the block who stop to say hello have conquered their fear of Mother's Alzheimers. They have used her illness to become healthier (more self aware, more self reliant, more reality based) themselves. 

This is the unexpected bonus of community mental health. That the community - the well people - experiences increased health as a result of daily contact with people who live with incurable illness.

Monday, October 20, 2008

Kindred Spirit

The above list is from blag/xkcd.com. Randall Munroe, the creator of xkcd, found this list among his things in his room, and while he can positively verify that it is in his handwriting, he has no idea what it means, or what impelled him to collect these words.

He gets lots of  helpful suggestions from his readers. I think this is an excellent use of the internet, almost as excellent as The Mother Project, in its incisive grasp of the way online communities can redress inequities of distribution of basic human resources, such as intelligence and memory.

Monday, October 13, 2008

Who Was That Masked Man

Dennis is making a mad dash through Europe so he can be back in time for Bart's birthday on Nov. 24. ( And Thanksgiving, Jenna's birthday this year, on Nov. 27)

Catch up with Dennis at the following locations.

October 17 Morning Arrive Milan
October 17 Evening Bern
October 18-19 Lausanne
October 20 Idle
October 21 Limoges, France
October 22 Rotterdam
October 23-25 Idle, possibly Manchester
October 26 Birmingham England
October 27 Idle
October 28 Groningen Netherlands
October 29-30 Arhus Denmark
October 31 Viborg, Denmark
November 1-2 Kiel
November 3 Bordersholm, Germany
November 4-5 Idle
November 6 Fly to NYC from Milan

Follow me, boys!

Taking a page from research conducted by the Fremont Street Center for Healthy Aging in partnership with the Morningside Heights Health & Well Being Project, the Academy of American Pediatrics just announced they were doubling the minimum recommended dosage of Vitamin D for infants, children and teens.

Thursday, October 9, 2008

La Professora

The Ames Center for Human Development sent in this photo of a Fremont Street research associate, pictured here complete with her research. Between work and family, Dr. K. R. Bruna has been so busy that she hasn't much bothered much with research into her own aging process, as you can see. 

A Fellow Traveler

Mystery Train
by Sherman Alexie

I boarded the Amtrak in Portland on my way
To Seattle and searched for an empty seat—
Hopefully an empty row. In Coach Car C,
I saw a seat next to a teen. The train swayed
As I approached him and asked, "Can I sit here?"
He wouldn’t look at me. His face was blank.
Asberger’s, I thought. "I must warn you I’m weird,"
The kid said. "I’m weird, too," I said and thanked
Him for his kindness. I worried he would talk
Too much, and he did, but he was charming and rude.
He said, "You’ve got a big head and face, dude."
He said, "I like rap music more than I like rock
Because I like blacks more than whites,
Especially when I play the royal game, chess."
With Asberger’s, I knew the kid might obsess
Over certain objects or ideas, like
The boy I know who collects Matchbox cars
And recites the manufacturing history
Of thousands of them. "It’s not too far,"
The Train Kid said, "We are on a train journey,
But I take it twice a month, on weekends.
I’m sorry I’m weird. I don’t have many friends.
My mother and father love me, but they
Got divorced when I was ten. You could say
They hate each other as much they love me."
He told me his father lived in Portland
And his mother in Seattle. "It’s kind of fun
To ride the train," he said. "I like to see
The landscape out the window. Pretty soon,
There will be a yellow truck parked outside
A blue and red house." Of course, he was right.
As we traveled north, the kid always knew
What was coming next. I asked, "What’s your name?"
He ignored me and said, "There used to be
A dog that lived in that junkyard. It’s a shame,
But I think he’s dead now." Then he looked at me,
Made eye contact for the first time, and said,
"In seven years, I have taken this trip
One hundred and nine times. I have only missed
Two trains because I had the flu in my head."
Jesus, the kid had become a nomad
Riding rails through the ruins of a marriage,
And, at first, I was eager to disparage
His parents, but then I realized that
His folks must love him as obsessively
As he loves them. They put him on the train
Because they need to see him. It was lovely
And strange. I wanted to ask this kid about pain
And what that word meant to him. I guessed
He could teach me a new vocabulary—
I was vain and wanted to be blessed—
But then he asked, "Are you old and married?"
"Yes," I said. "I’ve been married for ten years."
He nodded his head and looked out the window
At the sunlight flashing between tree rows,
Then whispered, "I have cried a lot of tears."
I was breathless. Stunned. I wanted to take
The kid into my arms, but I knew he’d hate
The contact, so I could only smile
When the kid said, "In a little while,
We are going to see the Mima Mounds."
And there were thousands of those things, six
To eight feet tall, dotting the South Sound.
Created with gravel, rocks, dirt, and sticks,
Those mounds escape explanation. They’re not
Indian burial sites. They’re not homes
For gophers or insects. They don’t contain bones
Or fossils or UFOs. They’re just odd
Geologic formations that will keep
Their secrets no matter how hard we try
To reveal them. When our train arrived
In Seattle, the kid walked beside me—
I had quickly become a habit, I guess—
Until he saw his Mom, short and pretty,
And pulled her tightly against his chest.
He said something to her, pointed at me,
And she smiled and waved. I walked home,
Chanted the first lines of this poem,
And committed them to memory.
And if a few strangers thought me crazy
For writing poetry, aloud, in public,
Like another homeless schizophrenic,
Then fuck them for wanting clarity
And fuck them for fearing mystery.
© 2008 Sherman Alexie

Sunday, October 5, 2008

Siblings, please note

Mother is entering a new stage of her illness. She is becoming more cognitively disabled, and more helpless. She is physically healthy, and emotionally peaceful, thanks to the attention she gets from her caregivers, and her awareness that she is never alone. But she is not on a plateau. She is folding up shop.

When she sees me, she reaches out to see if I am real and says "Is that really you?"

Thursday, October 2, 2008

Quest for Collective Intelligence

Research associate K. R. Bruna at the Ames Center for Human Development has been following our progress here at the Center. In a recent communique she observed that the Fremont Street Center for Healthy Aging's focus on close collaboration embodies the principles sociologist Etienne Wenger finds in a "community of practice".

I asked her what that meant.

Here's her reply.
Here's what Etienne Wenger, one of the originators of COP theory, says

Defining Communities of Practice
Communities of practice are everywhere. We all belong to a number of them-at work, at school, at home, in our hobbies. Some have a name, some don't. We are core members of some and we belong to others more peripherally. You may be a member of a band, or you may just come to rehearsals to hang around with the group. You may lead a group of consultants who specialize in telecommunication strategies, or you may just stay in touch to keep informed about developments in the field. Or you may have just joined a community and are still trying to find your place in it. Whatever form our participation takes, most of us are familiar with the experience of belonging to a community of practice.
Members of a community are informally bound by what they do together-from engaging in lunchtime discussions to solving difficult problems-and by what they have learned through their mutual engagement in these activities. A community of practice is thus different from a community of interest or a geographical community, neither of which implies a shared practice. A community of practice defines itself along three dimensions:
* What it is about - its joint enterprise as understood and continually renegotiated by its members
* How it functionsmutual engagement that bind members together into a social entity
* What capability it has produced - the shared repertoire of communal resources (routines, sensibilities, artifacts, vocabulary, styles, etc.) that members have developed over time.
Communities of practice also move through various stages of development characterized by different levels of interaction among the members and different kinds of activities (see "Stages of Development").

Communities of practice develop around things that matter to people. As a result, their practices reflect the members' own understanding of what is important. Obviously, outside constraints or directives can influence this understanding, but even then, members develop practices that are their own response to these external influences. Even when a community's actions conform to an external mandate, it is the community-not the mandate-that produces the practice. In this sense, communities of practice are fundamentally self-organizing systems.
The shared repertoire of communal resources here at the Fremont Street Center for Healthy Aging includes the front yard garden, tilled by Dennis and planted by Marcie, and the kitchen bulletin board & calendar,  a joint effort by both Marcie and Margaret. The contents of the refrigerator, curated by Marcie, with input from virtually all adult research staff, is a definite communal resource, as is our increased appreciation and understanding of the role of Mother's "folding art" , which comes to us courtesy of Margaret.