Paulina Borsook (loris) Sun 8 Feb 04 17:19
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...
David Shenk (davidshenk) Mon 9 Feb 04 11:11
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.
Paulina Borsook (loris) Mon 9 Feb 04 12:51
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...
Chris (cooljazz) Mon 9 Feb 04 15:04
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.
David Shenk (davidshenk) Mon 9 Feb 04 18:23
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.
Cynthia Dyer-Bennet (cdb) Mon 9 Feb 04 18:57
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?
William H. Dailey (whdailey) Tue 10 Feb 04 23:15
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.
David Shenk (davidshenk) Wed 11 Feb 04 06:43
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.
Gail Williams (gail) Wed 11 Feb 04 10:38
Wow. That's fascinating. I have joked that my poor memory contributes to originality. Maybe it's true.
Martha Soukup (soukup) Wed 11 Feb 04 11:08
(_The Mind of a Mnemonist_, by A.R. Luria.)
Cynthia Dyer-Bennet (cdb) Wed 11 Feb 04 11:29
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?
David Shenk (davidshenk) Wed 11 Feb 04 14:26
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.
Cynthia Dyer-Bennet (cdb) Wed 11 Feb 04 17:05
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.
Cynthia Dyer-Bennet (cdb) Wed 11 Feb 04 17:17
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?
some kind of ethereal transitive tense thing (katecat) Thu 12 Feb 04 01:03
(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/
David Shenk (davidshenk) Thu 12 Feb 04 06:21
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.
David Shenk (davidshenk) Thu 12 Feb 04 06:22
The pbs website is great. My handpicked resources are at www.theforgetting.com.
Cynthia Dyer-Bennet (cdb) Thu 12 Feb 04 08:24
(note: offsite readers can send their comments or questions to email@example.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?
Cynthia Dyer-Bennet (cdb) Thu 12 Feb 04 17:22
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?
David Shenk (davidshenk) Thu 12 Feb 04 21:02
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....
Ted (nukem777) Fri 13 Feb 04 11:13
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?
David Shenk (davidshenk) Fri 13 Feb 04 12:06
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.
Cynthia Dyer-Bennet (cdb) Fri 13 Feb 04 12:41
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.
David Shenk (davidshenk) Fri 13 Feb 04 13:15
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 (firstname.lastname@example.org) with any thoughts about the book.
some kind of ethereal transitive tense thing (katecat) Fri 13 Feb 04 13:37
thanks so much for being here, and for your excellent book!
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