Inkwell: Authors and Artists

    
just as an addendum to david's fine work, there is also an
excellent -novel- by michael ignatieff, 'scar tissue', came
out in the mid90s, i believe, shortlisted for a booker ---
about a beloved mom's descent in AD. the agony of the
mom's decline was mercifully -faster- (3 yrs, maybe?)
than many folks commomly deal with...but sometimes one
can also learn thru fiction...
  

    
Thanks for adding that, Paulina. Another wonderful writer, Jonathan
Cott, is working on what sounds like a fascinating book of interviews
with people about memory issues. I haven't seen the bulk of the book,
but I thought he did a very sensitive and thoughtful interview with me.
It's probably a year or so away from being published, but you can keep
your eye out for it.
  

    
and there's always auerbach's "mimesis" [g]. sorry, couldnt resist...
but yeah, we all hope for the fantasy of the good death.
but so often pain can NOT be managed, there are other
highly miserable things going on (choking on yr own fluids
is not fun; not being able to swallow or stop vomiting or...)
i think it so important to think about what is worth
preserving, and at what cost...
  

    
 David, thank you for writing the book, I just finished reading it
over the weekend. My mom had Alzheimers, though
 I lived across the country from her, and my brother and sister
 became her caretakers.  I only witnessed her decline on my 
 occasional trips to visit. The part that had the most impact on
 me were your passages about the loss of the ability for
"introspection". I can undertand all the outward signs of the
Alzheimers, till I read that I had no way of even vaguely
 understanding what an Alzheimers patient might understand or
comprehend about their situation. 
  

    
High praise indeed. Thanks for the kind words, Chris. Sorry to hear
about your mom. That's pretty much why I wrote my book, was to try and
make a connection between all the stuff we outsiders are observing and
what's going on inside the heads of the patients. It's an unknowable
thing, of course. But I wanted to get a little bit closer to it myself,
and maybe do the same for some caregivers. 
  

    
It is unknowable, but of course knowing what's in anybody else's head is
unknowable in the strictest sense. Clearly an Alzheimer's sufferer will be a
lot more difficult to suss out -- what does my mom mean exactly when she
says "the man said we should get hat, she was sure must other them to
the hose under"? -- but I can tell *something* about what she's trying to
tell me by her expression, by her gestures, by her tone, by her body
language.

David, in a previous post, you said:

> I used to be immensely frustrated at all the details I could not
> remember. But in studying the biology of memory, I learned that
> forgetting is an important part of the system.
>

In "The Forgetting" you discuss a case study on a man who was unable to
forget. Can you explain for those who haven't yet read your book how "not
forgetting" is so disastrous?
  

    
One would hope that Alzheimers bankrupts the current medical system.
Then we can get back to treating and curing patients instead of giving
them pain killers with deadly side effects.
  

    
Yes, Cynthia. This was the single most surprising thing to me in my
research. It started when I learned of the true story of a man in early
20th century Russia who had a perfect memory. His memory was so good
that explaining its power makes me seem like a novelist -- it couldn't
be true. But it is. This man's brain was skewed to remember every scrap
of every piece of information that he encountered. He remembered stuff
whether he wanted to or not. He remembered every word said to him, in
order, over decades' time. You could (as many did) present him with a
chart of random numbers and letters, and wait years and years and then
he could recall it on demand at any time. 

On the surface, it sounds amazing to anyone racking their brains to
remember how much sugar goes into a pumpkin pie. I'm a journalist, for
gosh sakes, and I can't remember the exact wording of a sentence that
someone said to me two minutes ago. 

But it turns out that what this man had was not a gift, but a defect.
The part of his memory system that is supposed to flush out 99.9% of
detail as it comes in was not working. Everything was being converted
into memories. As a result, he couldn't form intelligent summaries of
any of his experience. He couldn't make sense of books or of serious
conversations. He could spit anything back but not tell you what any of
it meant. In fact, to him a meaningless chart of numbers and letters
felt the same as a chart of actual words. 

He lacked the essential human quality of synthesis. To synthesize our
experience, to understand the importance of what just happened to us,
our minds pick a few representative details and fuse them into an
understanding. I couldn't tell you the exact words my parents said to
me 25 years ago when they announced their separation, but I could spend
four hours describing the fundamentals of the scene, and the meaning
and impact of it. My memory of it has only a few details, but a world
of understanding.

In this sense, forgetting is actually critical to remembering -- and
to thinking.
  

    

Wow.  That's fascinating.

I have joked that my poor memory contributes to originality.  Maybe it's
true.
  

    
(_The Mind of a Mnemonist_, by A.R. Luria.)
  

    
So remembering too much is as debilitating as forgetting too much, in some
ways. One wonders whether, if that Russian man had come down with
Alzheimer's, he'd finally be able to function normally.

One of the poeple you introduced in your book was a man named Morris
Friedell. He was in the very early stages of Alzheimer's and had put
together a presentation called "Potential for Rehabilitation in Alzheimer's"
for a 2000 conference on the disease.

You'd been engaging with him in email for a year when you finally met him
f2f at the conference. You spent quite a long time talking with him at the
conference and noted in the book that you'd planned to stay in touch with
him.

Were you able to follow through on that? Has he been able to hang on to his
mind enough for you two to continue communicating four years later?
  

    
Thanks, Martha, for mentioning that book. Luria is the
psychologist/writer (a predecessor to Oliver Sacks) who spent many
years with, and writes vividly about, the man with the perfect memory
that I discussed above.

I can't honestly say that I have remained in close touch with Morris.
More like off and on. But I have recently been in touch with him and he
is still very much able to communicate. In fact, he is a driving force
behind an online forum for early-stage patients, at
www.dasninternational.org.
  

    
That's quite a web site, thanks for the pointer. I'm impressed by how
articulate many of the contributors to it are, since they've been diagnosed
with dementia. I try to remember back how my mom was when I was first aware
that she was "off." In her current state she can't write her three-letter
name, let alone a multi-paragraph personal essay. But as I think about it I
remember that she enjoyed reading and doing acrostics and crossword puzzles
up to about 1998.

In fact, I just remembered one of those "moments" I had with her when I
realized she'd lost another ability. We'd taken a trip together. On the
plane ride to our destination, she read me a couple of sentences out of a
book she had brought with her. She loved the turn of phrase the author used.

All during out holiday she pulled that book out -- during an afternoon rest
in our hotel room, on a long ride on the tour bus, at night before we turned
the lights out. I didn't watch closely, but she sure was enjoying that book.

On our flight home 10 days later, she said, "Oh, you have to hear this. I
just found this amazing section in this book." And she read me the exact
couple sentences she'd read me 10 days before.

Only then did I realize that she'd had the book open to the same page for 10
days. She just kept reading the same page over and over again, never
aware that she was repeating.
  

    
Backtracking to the thread about how difficult it is to know what's inside
the head of an Alzheimer patient:

My mom has pretty severe aphasia at this point, her vocabulary has shrunk so
much that it's often difficult to know exactly what she's trying to express.
Other residents where she lives are even less able to speak, and some are
totally silent.

What I'm not clear on is whether this silence is because they can't
get the word that's on the tip of their tongue to come out as a sound,
or whether they've entirely lost the words. Sometimes it seems like they
really are struggling to make their mouth coordinate with their brain
and that there are some real thoughts they want to express. Sometimes
it seems like they're just plain blank.

And if their brains can't form any words, are they able to have thoughts?

I think of a baby in a crib. It's looking at an apple on the table nearby.
The apple is red. It's round. It's shiny. Inside it's white and juicy
and we know all that when we seen an apple. But a baby doesn't know any
of that. So what does it *think* about when it sees the apple? What
does the apple look like if the baby doesn't even grasp the concept of
"round" or "shiny" or even "red?" 

What IS thought? I'm getting dizzy just trying to express this question,
and I'm not sure it's something that can even be answered. Do you have
any comments on this, David?
  

    
(do not mean to interrupt that very interesting question--just want to
mention that the web site connected with this book at PBS is really excelent
and informative, with lots of useful links, including one to a website meant
specifically to be enjoyed along iwth an alzheimer's patient.)

oops: the URL

http://www.pbs.org/theforgetting/
  

    
It is, of course, unknowable. I don't think the analogy to a baby's
thoughts is a bad one, though of course it turns some people off. 

For me, the best way to start answering it might be to consider what
my own thoughts are like. Thoughts are pretty amorphous -- though often
don't take the shape of anything as crisp as words. They are often
just sensory impressions, blended with memories of past experience, or
emotional memories. I think a lot of that is still going on into the
middle and even late stages of the disease. The brain has not totally
shut down yet. A lot of it is functioning quite well. 

Back to the baby. It's my experience with children that they
understand a lot of stuff even if they don't show it. They "get" a lot
of what's going on, even if they don't follow your directions or answer
your question. In fact, because they don't filter or edit all that
well, they can easily pick up on vibes that we adults tune out. I would
venture that a lot of that sort of thing is going on in a late-stage
Alz patient. 

The problem of course is they can't communicate what they know. Part
of the human experience is to communicate what you're thinking, and
that part is shutting down pretty severely.
  

    
The pbs website is great. My handpicked resources are at
www.theforgetting.com. 
  

    
(note: offsite readers can send their comments or questions to
inkwell-hosts@well.com)

> In fact, because they don't filter or edit all that
>  well, they can easily pick up on vibes that we adults tune out.

Excellent point! You've articulated a feeling I've had tickling
the back of my brain for quite a while.

A few months ago, one of the residents in the memory care wing where my mom
is died. He'd been fairly low-functioning -- non verbal, mostly non-
reactive, almost never interacted with the other residents. But he wasn't
on hospice watch, so his death was somewhat sudden.

The staffers were quite sad. The residents didn't appear to notice that
the man was gone. But they somehow felt sad anyway. We suspected they
were picking up on the staffers' feelings, despite their best efforts
at hiding their sorrow. 

And I know that when I'm getting frustrated with my mom, even if I keep
my voice calm and don't give her any obvious outward indication about
what I'm feeling, she gets upset. She definitely picks up on my feelings.

Is the amygdala, the brain's source of "gut feelings," one of the last
parts of the brain to be affected by plaques and tangle?
  

    
Also, I wonder about how the plaques and tangles affect a patient's vision.

My mom has pretty good vision. Or rather, her eyes work fairly well for an
84-year-old, based on the last time I had her eyes checked, which would be
about two years ago. But she has trouble seeing, as do many of the
residents where she lives. It seems to take them a long time to be able
register what's going on in front of them. Show them a flower briefly,
they can't see it at all. Hold the flower out toward them, hold it still,
don't wave it around, give them time to focus on it, to take in the fact
that it's there, and they're pleased by it. 

It seems that the more "gone" the patient is, the long it takes them
to see anything. I'd guess that the brain's ability to process the 
messages the eyeballs send is compromised by this disease. But how late
into the disease are those with Alzheimer's able to use their sight?  
  

    
You're asking such deep questions, Cynthia, I haven't had to answer
some of them even once in five years. You're really digging deep, which
is great. 

The amygdala is actually ravaged very early in the disease. That's one
of the reasons that emotions can go haywire early on. I don't know
that its exactly right to say that our gut feelings come from the
amygdala, and I'll have to do some digging to understand how it is that
mid and late-stage patients still pick up on basic feelings. 

The eyesight question I can't answer at all right now, but I may be
able to find someone who can....
  

    
David, where do you stand on stem cell research? Is this something the
medical community in the United States wants a green light on, or are
there more ethical issues to be resolved?
  

    
The ethicists I admire are comfortable with moving forward on stem
cell research according to certain established guidelines. Obviously,
we cannot ever allow a system of incentives to develop where women are
aborting their fetuses for personal gain or even for the sake of this
research. I personally am also uncomfortable with human cloning and
other human genetic engineering -- although I think it's likely we will
start seeing these things reasonably soon. 

Another thing to say about stem cell research is that scientist's have
oversold it in one key way: the way it's gotten translated to the
mainstream press, if scientists could only get their hands on enough
stem cells, we could quickly eliminate Alz and Parkinson's and other
brain diseases. It's just not anything close to that simple. The
benefits from stem cell research are going to hit us 50 or 100 years
from now, not 5 years from now.
  

    
Yup, the ethics of stem cell research are complex for those who understand
about life's continual trade-offs and the fact that black/white, right/wrong
are much too simplistic to serve as rigid demarcations in these kinds of
determinations.

David, I want to thank you for all the time and thoughtfulness you've put
into this discussion over the past two weeks. I hope you've enjoyed
yourself and found the experience rewarding. I know I've learned a lot,
though there are still many unanswered questions -- mostly ones I realize
can't be answered, of course. 

We have a new guest starting in Inkwell today, Steven Johnson. Though
when we did the scheduling we didn't consider this, it seems that Steven's
exploration of brain function follows naturally from this discussion. 

Not that we have to stop here. This topic will remain open, ready for 
further discussion if you want to continue. You're also invited to join
the conversation with Steven in the next thread. Either way, I hope
you'll stick around, David, and help us all ponder the amazing intricacies
of the human brain. 
  

    
You're most welcome. Thanks for having me. I enjoyed it. Great
questions, great explorations. Thanks for leading us so ably, Cynthia.

You're right -- Steven Johnson is a perfect next course. As it
happens, I'm a friend, neighbor and admirer of his. A small part of The
Forgetting was adapted from an article I wrote for his terrific online
magazine, FEED. Another book of mine includes a friendly (if stark)
debate between us about some issues of technology and culture. His new
book is just great.  I strongly urge people to join that discussion.
I'm sure it will rock. 

I've unfortunately got to sign off. I'm woefully behind on another
project and have some other commitments to attend to. Thanks again to
everyone, and please continue to email me (dshenk@yahoo.com) with any
thoughts about the book. 
  

    
thanks so much for being here, and for your excellent book!