Filed under: Alzheimer's, Connections, Diane Rehm, Health, Hospice, Kindle, NPR, Science, Society, tech | Tags: Alzheimer's, Alzheimer's Association, Alzheimer's Association International Conference, Alzheimer’s Disease Neuroimaging Initiative, amyloid plaque, blogging, care-giving, CNN, Diane Rehm, free, health, Her Final Year, hospice, jim downey, John Bourke, Keith Fargo, Kindle, Lauran Neergaard, Liza Lucas, Murali Doraiswamy, Nancy Donovan, NPR, science, tau protein, technology
It’s been seven and a half years since my mother-in-law passed away from Alzheimer’s. A couple years later, we published Her Final Year. Since then I have kept an eye on ongoing research concerning the disease, and have mentioned it here when I thought appropriate. This week, there are several new promising developments to come out of the Alzheimer’s Association International Conference in Washington, D.C.
First is a saliva test for metabolites which indicate brain changes associated with Alzheimer’s. From this CNN article:
Researchers from the University of Alberta in Canada analyzed saliva samples of fewer than 100 people, divided into three groups based on cognitive ability: 35 with normal aging cognition, 25 with mild cognitive impairment and 22 with Alzheimer’s disease.
Using protein analysis technology, researchers examined the saliva of each individual, analyzing nearly 6,000 metabolites, which are small molecules that are byproducts of chemical reactions in the brain.
The team then discovered specific biomarkers (or patterns of metabolites) in the groups with known Alzheimer’s or mild cognitive impairment, in comparison with the natural aging group, and tested the biomarkers as predictors of cognitive performance.
It’s a very small study, but if additional research into this area bares out the results, this could be a quick and inexpensive screening tool to help determine who may be at risk for Alzheimer’s. Because, as discussed in a very good segment on the Diane Rehm show this morning, early detection helps even though there are limited treatment options for Alzheimer’s (and other age-related dementias). That’s because there are things you can do to prepare for managing the disease: establish necessary legal protections (things like family trusts and durable power of attorney), educate family members and caregivers, investigate daycare and assisted living options, participate in drug and treatment trials, and similar.
Speaking of drug and treatment trials, the Alzheimer’s Association has a very useful online tool for Alzheimer’s patients, care-providers, and family members:
Alzheimer’s Association TrialMatch is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. Our continuously updated database of Alzheimer’s clinical trials includes more than 225 promising clinical studies being conducted at nearly 700 trials sites across the country.
This is just one of the new tools which have been made available since we cared for Martha Sr. Because in the last 7+ years, there has been a lot of research and a growing awareness that Alzheimer’s will touch nearly every family at some time.
One of the other pieces of information to come out of this week’s is that women seem to be more susceptible to the disease, and experience a faster decline in their mental abilities than men:
Older women with mild memory impairment worsened about twice as fast as men, researchers reported Tuesday, part of an effort to unravel why women are especially hard-hit by Alzheimer’s.
Nearly two-thirds of Americans with Alzheimer’s are women.
At age 65, seemingly healthy women have about a 1 in 6 chance of developing Alzheimer’s during the rest of their lives, compared with a 1 in 11 chance for men. Scientists once thought the disparity was just because women tend to live longer — but there’s increasing agreement that something else makes women more vulnerable.
There are a number of other factors which can have an impact on those numbers, of course. But even accounting for differences due to education, lifestyle, and social status, the discrepancy between men and women could not be accounted for. And having close family who had Alzheimer’s is a substantial risk factor, about doubling your chances of developing the disease. As is having any kind of major health crises requiring either hospitalization or surgery under general anesthesia. In each and every case, men seem to fare better than women.
That may not seem to be a “promising development”, particularly if you are a woman in the high-risk category/categories. But it is, in the sense that scientists are now coming to understand the disease much, much better than they did just a decade ago. When we cared for Martha Sr, there really wasn’t a good diagnostic tool to determine whether or not someone had Alzheimer’s — it was a diagnosis confirmed postmortem. Now there are very good imaging tools available for amyloid plaque and tau protein, as detailed at the Alzheimer’s Disease Neuroimaging Initiative.
As I noted above, there are still very limited treatment and drug options, though even there some hopeful results have been reported at the Conference. But real progress has been made. Alzheimer’s no longer needs to be a devastating diagnosis, something to be feared and hidden. If you, or someone you love, is showing any signs of memory or cognitive impairment, seek help. It’s even possible that through participation in some of the clinical trials you can be part of the solution.
PS: As noted previously, the Kindle edition of Her Final Year is available as a free download on the first of each month.
Filed under: Alzheimer's, Amazon, Connections, Feedback, Health, Hospice, Kindle, Marketing, Promotion, Publishing, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, caregiving, Communion of Dreams, direct publishing, feedback, free, health, Her Final Year, hope, jim downey, John Bourke, Kindle, literature, memoir, promotion, reviews, Science Fiction, writing
Playing a bit off of the title of my previous blog post …
Why? Because offering free downloads is one of the basic promotional tools on the Kindle platform. It’s a way to generate sales and interest in a book. And also because it’s important to get the books to readers who may not be able to afford even the modest price of an e-book. For someone struggling as a care-provider, sometimes even a $2.99 price tag can be hard to budget for. Likewise for people who find themselves on hard times, and need a little hope and escape … something which I like to think Communion of Dreams can provide.
So we’ll give this a try. If you know anyone who might enjoy either or both books, let ’em know that they can download them for free tomorrow. And July 1st. And August 1st. And …
Filed under: Alzheimer's, Amazon, Feedback, Hospice, Kindle, Marketing, Promotion, Publishing, Science Fiction, Society | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, dementia, direct publishing, feedback, free, Her Final Year, hospice, jim downey, John Bourke, Kindle, memoir, promotion, reviews, Science Fiction, thanks
There are a couple of new reviews up on Amazon which I’d like to share. The first is for Her Final Year:
A story worthy of five stars but I found it kind of difficult to keep straight, which family and patient they were talking about. The author did a good job of writing about the difficulties faced by the family caregivers. I hand it to them for staying with a very difficult task for a very long time.
The second is for Communion of Dreams:
James Downey has created a novel that compares favorably with the old masters of science fiction.Our universe would be a better place were it more like the one he has imagined and written about so eloquently.Thank, sir, you for this wonderful escape from reality.
To show that appreciation, this coming week both books will be available for free download, but at two different times. The Kindle edition of Her Final Year will be free Monday through Wednesday, and the Kindle edition of Communion of Dreams will be free Thursday and Friday.
Filed under: Alzheimer's, Amazon, Connections, Health, Hospice, Kindle, Marketing, Promotion | Tags: Alzheimer's, blogging, care-giving, dementia, direct publishing, Ether One, free, game, health, Her Final Year, hospice, jim downey, John Bourke, Kindle, memoir, Michael Thomsen, promotion, The New Yorker
OK, a bit flip, there. Sorry. This actually sounds like a really interesting game, and the people who are involved with it seem to understand about the limitations inherent in it:
Ether One, a first-person puzzle game made by a six-person team at White Paper Games, in Manchester, England, is about the slow dissolution of the brain. The game casts the player as an employee of a futuristic memory-retrieval company called the Ether Institute of Telepathic Medicine. Your job is to dive into the mind of Jean Thompson, a sixty-nine-year-old woman diagnosed with dementia, and retrieve a series of lost memories. Using scans of the woman’s brain, the Ether Institute reconstructs 3-D simulations of what remains of her memory. Players must reassemble the story of her life using the oddly alien artifacts (the symbolic significance and basic operation of which remain a mystery) left behind in the fraying simulation of her past home and work places.
* * *
Ether One is built around a central control room from which players access the four main areas of Jean’s past—a seaside town in England, an industrial mine, a processing factory, and a lighthouse overlooking the ocean. Each area is filled with hundreds of tchotchkes, mementos, and mundanities that could hold some long-forgotten significance. Players are asked to “collect” the memories and are limited to carrying only one object at a time. At any point in the gameplay, they can instantaneously teleport back to the control room, which is lined with empty shelves to hold anything they collect. As a player, you’re never sure what’s important and what isn’t, so the system encourages you to take everything.
This hoarding is repaid with periodic puzzles, such as a door with a numeric lock whose code can be found on the bottom of a previously collected mug. As the game progresses, these puzzles increase in complexity, as does the array of random objects filling the shelves. The collection gradually overwhelms the player’s ability to remember just where all of these things came from and why they seemed important enough to retrieve. Why did I bring this plate all the way back here? Whose hat is this supposed to be again? It’s a tidy simulation of the cognitive degradation of dementia.
The author of the piece, Michael Thomsen, has first-hand experience with a family member who suffered with dementia. Here’s his concluding insight about Ether One:
Playing Ether One, I can’t say I felt any new illuminations about the disease. Most of the things I watched my grandmother go through were missing in its simulation, but I was reminded of the helplessness I felt. After solving the first few puzzles in Ether One, I realized that I’d been storing way too many items back in the hub world. It reminded me of my grandmother’s stuffed bookshelves in her nursing home room—old books, half-used perfume bottles, porcelain ferrets, a piece of Bohemian glass I’d given her once—we’d kept as much as we could when she moved in, trying to guess what might mean something to her and what might be lost for good. If video games indulge in a fantasy of objects—swords, spaceships, and the like—it’s one that’s hard to translate into a room filled with forgotten things. In Ether One, I found that the distance between these seemingly incompatible worlds lessened just a little. Even though I couldn’t quite forget myself inside its artifice, it was comforting to have the space to try.
May be worth checking out.
Filed under: Alzheimer's, Amazon, Connections, Depression, Feedback, Health, Hospice, Humor, Kindle, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, dementia, feedback, free, health, Heidegger, Her Final Year, hospice, jim downey, John Bourke, Kindle, reviews, Science Fiction
The caregiver puts up with that out of love and decency. This book describes these things in the form of daily and weekly accounts as well as diary log pages of personal fear and depression and exasperation and recurring bubbling senses of humor. I loved this because it made me cry and it made me laugh. It’s not all drudgery. It’s hysterically funny at times. But it wouldn’t be funny at all if you didn’t love the patient. This is a book of love…
So often people see the words “Alzheimer’s” or “dementia” or even “care-giving” and just move on, thinking that the book (and the experience) is nothing but darkness and depression. And yeah, there is darkness there, but to borrow a phrase from Communion of Dreams/Heidegger: “That which emerges from darkness gives definition to the light.”
We’re coming up on the three-year publishing anniversary (July 15). If you haven’t yet read Her Final Year go ahead and do so. If you want to wait a month, the Kindle edition will be available for free download around the anniversary.
And if you have read it, please consider posting your own review on Amazon or elsewhere. It helps.
Filed under: Alzheimer's, Amazon, Artificial Intelligence, Brave New World, Connections, Feedback, Genetic Testing, Health, Hospice, Humor, Kindle, Marketing, movies, Promotion, Publishing, Science, Science Fiction, tech, Writing stuff, YouTube | Tags: Aliens, Alzheimer's, Amazon, artificial intelligence, blogging, direct publishing, DNA, feedback, free, health, Her Final Year, hospice, humor, jim downey, John Bourke, Kindle, movies, promotion, science, Science Fiction, Scrivener, St. Cybi's Well, synthetic biology, technology, writing, www youtube
Catch this news this week?
Synthetic biology: New letters for life’s alphabet
The five bases found in nucleic acids define the ‘alphabet’ used to encode life on Earth. The construction of an organism that stably propagates an unnatural DNA base pair redefines this fundamental feature of life.
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Sorry about the sparseness of posting lately. I’ve been … busy. Have had a couple of interesting things happen which could play out in some very good ways. One is still enough in an embryonic stage that I won’t mention anything about it yet, but the other is far enough along that I’ll share: there’s a literary agent who is potentially interested in representing me, something which I have been thinking about for a while.
And it seems like a good enough fit that I took all of last weekend to put together a submission package for formal consideration. That meant going through and doing fairly thorough revisions to the first few chapters of St Cybi’s Well, using the feedback I have gotten from half a dozen ‘beta readers’, as well as composing a formal synopsis of the book. Frankly, both were a lot of work, and somewhat skewed my normal work schedule such that it is just now getting back to what passes for normal in my life.
But it was also helpful, and forced me to clarify some things which I had left unfocused for the rest of the book. Because of the way I am writing this (using Scrivener), it has been fairly easy for me to block out both the overall arc of the book as well as character developments. But doing so has been based on chapter notes more than anything, meaning that it was still somewhat in flux. Creating a full synopsis meant that I had to put the whole thing into one coherent document. And even though it was something of a pain in the butt, the result is helpful.
I’ll keep you posted as to any concrete developments.
* * *
Remember this scene from Aliens?
Considered a classic, and rightly so. But I’ve always thought that a big part of the brilliance of it is how it sets up what happens immediately after:
Back at the groups’ table, Bishop holds up his hand and examines a tiny cut closely.
BURKE: I thought you never missed, Bishop?
To Ripley’s horror, a trickle of white synthetic blood runs down his finger. Ripley spins on Burke, her tone accusing.
RIPLEY: You never said anything about an android being on board! Why not?!
BURKE: It never occurred to me. It’s common practice. We always have a synthetic on board.
BISHOP: I prefer the term ‘artificial person’ myself.
* * *
Oh, one more thing: in observation of Mother’s Day, the Kindle edition of Her Final Year is available for free download through Sunday, May 11th. If you’re new here, just a quick note: this is our care-giving memoir about the challenges and rewards of caring for someone with dementia, as well as the long recovery/reflection period which comes after. It seems to have helped a lot of people. Perhaps it can help you or someone you know.