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: Connections, Constitution, Fireworks, General Musings, Government, Kindle, Science Fiction, Society | Tags: Amazon, America, blogging, Civil War, Communion of Dreams, direct publishing, Fourth of July, free, freedom, history, Independence Day, jim downey, Kindle, promotion, Science Fiction
I wrote this nine years ago, and posted it to this blog seven years ago. It seemed like a good time to repost it.
Thoughts on This Day
One birthday, when I was nine or ten, I woke with anticipation of the presents I would receive. Still in my pajamas I rushed into the kitchen where my parents were having coffee, expecting to get the loot which was rightfully mine. My father happily handed over a small, wrapped box. I opened it eagerly, to find a little American flag on a wooden stick. My father said that since my birthday was July 4th, he thought I would appreciate the gift.
Horror-struck first at not getting anything better, then a moment later at my own greed, I guiltily told my parents that I thought it was a fine gift.
After a moment, of course, my folks brought out my real presents, and there was a fair amount of good-natured teasing and laughing about the little trick they had played on me.
That was almost 40 years ago, and I can no longer tell you what presents I received that day. But the lesson in expectations and perspective my dad taught me that morning always remained with me. My dad had been a Marine, fought in Korea, and was a deeply patriotic cop who was killed while on duty a couple of years after that birthday. I have no idea what happened to that little flag on a stick, but I do still have the flag taken from my father’s coffin, carefully and perfectly folded at the graveside when we buried him.
I’ve never looked at the American flag without remembering what a fine gift it really is and, as so many others have written, what it represents in terms of sacrifice. I love my country, as any Firecracker Baby is probably destined to do. You just can’t ignore all that early training of patriotism, fireworks, and presents all tied up together.
But that doesn’t mean that I am blinded by patriotism. As I’ve matured and gained life experience, I’ve learned many other lessons. Lessons about tempering expectations, living with occasional disappointment, accepting that things don’t always work out the way you plan no matter how hard you work, how good your intentions, or how deserving you are. Still, you learn, grow, and do the best you can. This, it seems, is also the story of America. I believe we are an exceptional people, holding great potential, with our best years still to come. But nothing is guaranteed. We must honestly, and sometimes painfully, confront our failures, learn from them, and move on. The original founders of our country were brilliant, but flawed as all humans are flawed. Some of their errors led directly to the Civil War, that great bloody second revolution of the human spirit. That they made mistakes does not negate their greatness; rather, it shows us our potential even though we are not perfect. They knew, as we should know, that only we are responsible for our self-determination. Not a king, not a God, not a ruling political class. Us.
Today we’ve been gifted with a small box with a flag inside. A token of our history. Let us not take it for granted. Let us not think that the thing itself is more important than what it represents. Let us look on it and declare our own responsibility, our own self-determination.
Happy Independence Day.
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: Book Conservation, Brave New World, Connections, Kindle, Marketing, NYT, Promotion, Publishing, Science Fiction, tech | Tags: blogging, book conservation, bookbinding, Communion of Dreams, direct publishing, jim downey, Kindle, New York Times, Nick Bilton, Science Fiction, technology
A very nice meditation on physical versus electronic books, and how each has a role in the world: In a Mother’s Library, Bound in Spirit and in Print
From the piece:
Over the years, I’ve gone back and forth over the merits of print versus digital books so many times, it’s as if I were in an abusive relationship with myself. But my mother’s passing and the sentimental value of her library have finally put an end to that debate in my head. It’s not that one is superior to the other. They each have their place in this modern world.
For example, I love listening to audiobooks when I drive. And taking a Kindle on a long trip is nothing short of magical. But that doesn’t mean I want my mother’s old Kindle to remember her by. And I certainly wouldn’t get much from her Audible collection.
Instead, I want her physical books. I want to be able to smell the paper, to see her handwriting inside, to know that she flipped those pages and that a piece of her lives on through them.
I understand the “back and forth”. On the one hand, I love the fact that something in excess of thirty thousand Kindle edition copies of Communion of Dreams have been downloaded. On the other, I’m a book conservator.
As a conservator, as well as a huge fan of the appropriate use of technology, I’ll say this: for convenience, electronic. For permanence, print. My smartphone has dozens of different books on it, and access to millions more. But there’s not a digital technology out there that has anywhere the stability of paper and ink.
Filed under: Amazon, Connections, Feedback, Kindle, Marketing, Publishing, Science Fiction | Tags: Amazon, art, blogging, Communion of Dreams, direct publishing, feedback, jim downey, Kindle, reviews, Science Fiction, writing
Two new reviews of Communion of Dreams:
on March 23, 2015Very well written..kudos to author. Just like seeing an engrossing sci-fi movie. Time flies as you turn the pages in this book!
on March 17, 2015An excellent new version of a future, well presented, lots of new ideas and interesting characters Enjoyed not being able to predict what was going to happen next!
Agree? Disagree? Nah, don’t tell me — go write a review yourself! After all:
Filed under: Alzheimer's, Amazon, Connections, Feedback, Humor, Kindle, Marketing, movies, Privacy, Promotion, Publishing, Science Fiction, Violence, Writing stuff | Tags: Alzheimer's, Amazon, blogging, Communion of Dreams, direct publishing, feedback, free, Her Final Year, humor, introvert, jim downey, John Bourke, Kindle, literature, Monty Python, movies, privacy, promotion, reviews, Science Fiction, This I Believe, violence, writing
Today’s the official Third Anniversary for the publication of Communion of Dreams, and in celebration, you can download the Kindle edition today for free! Who doesn’t like free? I mean, yeah, sure, if someone walks up to you and offers you a free punch in the nose, you might not like it, but other than that …
Sorry I haven’t posted much lately. I was honestly surprised when I looked and saw that the last blog entry was ten days ago. I haven’t been ill, or traveling, or anything. But after I recorded the essay for “This I Believe” I was feeling very … quiet. As I explained to a friend:
It may be hard to understand, and I didn’t make a big deal out of it, but it (recording the essay) was actually a very hard thing for me to do. It wasn’t just any essay or promotional piece I’d written, not like doing interviews or anything. The essay was powerful because of the emotions behind it — I’m certain that’s why it has resonated for people. But that same source of power cuts very deep for me. Particularly after the stuff last month, it took a hell of a lot for me to come to terms with it all again, and to do so in such a public fashion.
You probably wouldn’t think so from reading this blog (or the book which came out of it), but I am actually a very private and introverted person by nature. My writing has always been a way for me to push myself out of my comfort zone, to force myself to be somewhat more public, more sharing. And it’s worked. Mostly. But there are still times when I just need to withdraw, to recover my energy and self-confidence. This last week+ has been one of those times.
Thanks for understanding. Now, go download that book if you haven’t already.