Filed under: Alzheimer's, Amazon, Health, Kindle, Promotion, Publishing, Writing stuff
In light of yesterday’s anticipation, today’s official announcement actually has me feeling sorta “flat.”
I’m not sure why. The book is now available in both Kindle and paperback versions, and all the preliminary indicators are that things will go well – we’ve even sold a book already! I should be excited.
Instead, I just feel tired and unmotivated. Odd.
Jim Downey
Filed under: Bruce Schneier, Civil Rights, Failure, Health, Privacy, PZ Myers, Science, tech, Travel
I just took my blood pressure. Because of past problems with hypertension, I keep a pretty close eye on it. Here are three readings, using a very good automatic digital monitor:
- 123/85
- 121/88
- 115/81
This is how they usually recommend doing it – taking several readings over the course of a few minutes, to help get a good sense of where your bp actually is since there are natural variations and just one reading can be misleading. And those numbers are pretty good – showing that my blood pressure is under control thanks to a combination of diet, exercise, and drugs.
Happily, my doctor trusts me to keep an eye on my bp, because whenever I go in to the clinic, my numbers jump. The readings above would probably be a good 20/10 points higher, if not a lot more. See, I have a mild case of “white coat syndrome”. I just dislike almost any kind of testing by strangers like that (one of the reasons I am happy to work on my own, in my own business, and on my own time).
I also hate traveling. Well, more accurately, I hate having to put up with the hassles and intrusion on my privacy that goes along with dealing with airport security. Flying is fine. So is driving around in a new place, seeing the sights, experiencing a new culture. But dealing with the TSA or any similar entity? Gah – I hate it with a passion.
And if the latest debacle of an idea to provide ‘security’ comes to pass, I’m probably going to hate it even more:
Terrorist ‘pre-crime’ detector field tested in United States
Planning a sojourn in the northeastern United States? You could soon be taking part in a novel security programme that can supposedly ‘sense’ whether you are planning to commit a crime.
Future Attribute Screening Technology (FAST), a US Department of Homeland Security (DHS) programme designed to spot people who are intending to commit a terrorist act, has in the past few months completed its first round of field tests at an undisclosed location in the northeast, Nature has learned.
Like a lie detector, FAST measures a variety of physiological indicators, ranging from heart rate to the steadiness of a person’s gaze, to judge a subject’s state of mind. But there are major differences from the polygraph. FAST relies on non-contact sensors, so it can measure indicators as someone walks through a corridor at an airport, and it does not depend on active questioning of the subject.
Charming.
Of course, scientists are skeptical:
Steven Aftergood, a senior research analyst at the Federation of American Scientists, a think-tank based in Washington DC that promotes the use of science in policy-making, is pessimistic about the FAST tests. He thinks that they will produce a large proportion of false positives, frequently tagging innocent people as potential terrorists and making the system unworkable in a busy airport. “I believe that the premise of this approach — that there is an identifiable physiological signature uniquely associated with malicious intent — is mistaken. To my knowledge, it has not been demonstrated,” he says. “Without it, the whole thing seems like a charade.”
As well they should be. Even the DHS spokesperson says that the FAST system was only “70% accurate” in lab tests. As PZ Myers notes:
Feeling anxious about the job interview you’re flying to? You will be strip-searched. Angry because the incompetent boob at the ticket counter bumped you from your flight? Your body cavities must be inspected. Steely in your resolve, forthright in your determination to strike the infidel? Welcome aboard!
More security theatre. Wonderful.
Jim Downey
Filed under: Health
She showed up 17 years ago, small enough to fit in the palm of your hand, all mouth with a little skin and bones thrown in.
* * * * * * *
We call her “Her Majesty” now. Partly, a play on her name (she was named after Eleanor of Aquitaine, due to her feistiness if not her intelligence), and partly just because as she has gotten older, she has taken on a regal bearing which demanded certain sacrifices from her human servants. Like being fed *only* canned food. In small servings, so she doesn’t upset her delicate tummy. About once an hour, or as often as she can manage it.
She’s also become more, um, casual about her litterbox habits. My wife and I have become more adept at finding her little surprises. We’ve had to.
* * * * * * *
A couple of weeks ago, we first noticed something was wrong. Her Maj likes to curl up on my wife’s lap whenever she can, which is usually possible while my wife is working at the computer. And following dinner, when we’re watching a movie or something.
Anyway, she came into the living room, where we were on the couch, and wanted to jump up into my lap. This is somewhat unusual. The fact that she jumped headlong into the small lap table I was using was even moreso. And she was clearly disturbed by this, to the point where she didn’t even pull the usual feline “I meant to do that” routine.
Later, we noticed her navigating by whisker through the kitchen. And bumping into chairs moved slightly from their usual place.
* * * * * * *
“So, stroke?” I asked the vet. I love our vet. He only makes house calls. When necessary, he uses a surgical suite after hours at one of the local animal hospitals. He’s smart, personable, sensible.
He was sitting on our kitchen floor, holding Eleanor, checking pupil dilation and all her other vitals. He’d done this as part of a routine exam just a few weeks previously. “Probably. When did you first notice something was wrong?”
I told him about the incident with the lap table. And that she had a day a couple before that when she was lethargic and uninterested in food.
He nodded. “Probably, though she isn’t showing some of the classic symptoms of a stroke. It could also be a brain tumor or some kind of lesion. We could schedule her for a MRI, find out for sure.”
He looked at my wife and I. We looked at each other.
* * * * * * *
She showed up 17 years ago, small enough to fit in the palm of your hand, all mouth with a little skin and bones thrown in. That memory flashed to me as I saw her there in his gentle hands.
“I don’t think we need to put her through that,” I said.
“Yeah, I’d only recommend it if you guys needed to ‘do everything for her’ for your own peace of mind. In the end, it really wouldn’t make much difference in either treatment or outcome. At her age, surgery to remove a tumor probably isn’t the best idea, and any cancer treatments wouldn’t help extend her life much.”
“We just want her quality of life to be as good as possible, for as long as makes sense,” said my wife.
The vet nodded again. “She’ll probably do OK for a while. She may recover her sight to some extent – cats are more resilient than people when it comes to such things. A baby aspirin every three days will help if there is a small clot which caused a stroke, and won’t hurt otherwise.”
“And we should expect more strokes down the line,” I said.
“Yeah. Probably.” He scritched her ears, popped a baby aspirin down her throat. He made it look easy. Then he let her go. “Don’t move the furniture around too much on her.”
* * * * * * *
Jim Downey
The National Institute on Aging has come up with new research guidelines and two new clinical diagnosis relating to Alzheimer’s. From the NIA news release:
For the first time in 27 years, clinical diagnostic criteria for Alzheimer’s disease dementia have been revised, and research guidelines for earlier stages of the disease have been characterized to reflect a deeper understanding of the disorder. The National Institute on Aging/Alzheimer’s Association Diagnostic Guidelines for Alzheimer’s Disease outline some new approaches for clinicians and provide scientists with more advanced guidelines for moving forward with research on diagnosis and treatments. They mark a major change in how experts think about and study Alzheimer’s disease. Development of the new guidelines was led by the National Institutes of Health and the Alzheimer’s Association.
From NPR coverage of the news:
The new definitions, which were just published online by the journal Alzheimer’s & Dementia, acknowledge this dimly understood early phase of Alzheimer’s. Now there are two new pre-dementia phases: mild cognitive impairment and “preclinical Alzheimer’s.”
In mild cognitive impairment, a person’s changes in thinking are noticeable to himself, friends, or family. They would show up on tests of memory and recall, but don’t interfere with everyday activities. Alzheimer’s is just one possible cause. Because there are no treatments to prevent or stop Alzheimer’s, many people may not consider this diagnosis a blessing.
The second new phase, preclinical Alzheimer’s, is much squishier. There’s no list of symptoms that a doctor can whip out to say you’ve got it. Rather, the goal in creating this category is to see if scientists can define when the disease starts, and track it through biomarker tests, brain imaging, or other yet-to-be-invented tests. If that happens, it might someday lead to ways to prevent Alzheimer’s. But for now this category is useful only to researchers.
As I noted four years ago, I have faced the question of whether to be tested for a disease I may have, but for which there is very little in terms of treatment options (and no cure). From that blog post:
It is a very difficult decision to be tested for a genetic disease which you may have, and for which there is no known treatment (let alone a cure). If you test positive, you know exactly the sort of future you face. And, if you test positive, it can have a significant impact on your employment and insurance possibilities, even decades before you might experience any onset of symptoms.
There is a similar disease which runs in my family called Machado-Joseph. In terms of statistics, there is about a 68% chance that I carry the gene for it, though I do not have the other familial characteristics which seem to track with the disease. So I have elected not to be tested. Besides, at nearly 50 years of age, if I did have the onset of the disease, it would be likely that it would progress so slowly that I would die of something else (the younger the age of onset, the more rapidly the disease progresses).
That said, I have told my sister (who has the disease) that if her doctor wants to do the genetic test on me in order to have that additional bit of information, I would do so.
And I suppose that is where I come down on the issue of whether or not to do any of the new testing for Alzheimer’s: if it will help science better understand this disease, how it develops, and to chart possible treatments, I would participate. It may not be something I could benefit from myself, but I have to look at the bigger picture. I think we all do.
Jim Downey
It’s been a while since I posted any photos of my book conservation work. So I thought I’d take some snaps of this 1668 legal text I was rebinding in full Moroccan goatskin.
Here’s the first image, of the front of the skin. It’s been mounted to the boards and a spine liner, then shaped to fit over the raised bands on which the text block is sewn:
The second image is on the inside, showing the position of the boards and spine liner, with the overhang of leather which will be turned-in to finish the edge:
The third image shows a detail of that turned-in leather strip. It’s hard to tell, but the very edge of the leather had been pared down so that it would create a bevel to finish nicely:
The next image is another detail, showing one way to make a finished corner. I like this method, because it finishes off clean yet still gives additional protection. The little tab wraps around the corner of the board, then the two flaps come around the edge:
Then there’s an image of the cover with heavy cords wrapped around the re-dampened leather. This helps to shape the leather over the raised bands on the spine, since as the leather dries, it pulls tight and holds that shape:
The next image shows what the spine looks like once it has dried and the cords are removed:
Then a detail that shows what the spine looks like after simple blind tooling to accentuate the bands:
And lastly, a shot of the finished book, after gold-stamped labels have been mounted:
Not bad, eh? I’m pretty happy with the finished product. And I am glad to be done with this – it was part of a project I started last summer before becoming so ill with the pneumonia and all the related problems which have still plagued me since. Because of these health problems, I lost 50% of my income . . . and spent fully a third of the remainder on medical bills. Wrapping up this project, and getting the books back to the client, is something of a turning point for me.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Guns, Health, Publishing, Writing stuff
I usually try to avoid posting things on April 1, since *I* don’t trust hardly anything I see online on April Fools. So I held off, other than the link to my Guns.com article.
Anyway, some interesting things to report. First off, the numbers. March had 768 downloads of my complete novel, which means there’s been over 2,000 downloads so far this year, and some 31,000+ total. No, I have no idea when it will be actually published by Trapdoor, so don’t ask.
Hits to BBTI have slowed a bit – down to only 350,650 for March. That puts us at 5,759,535 total hits. Even with it slowing down, we should break 6 million total hits sometime before the end of this month.
Writing for Guns.com has been fun, and seems to have gone well enough. The articles are being well received from what I can tell. I’ve been asked to start also doing ‘Editor Reviews’ of some handguns, and those will start to show up here any day now, if you are interested in such things.
I had another CAT scan this week, following up on the ongoing health issues. Preliminary report from the scan is that things are clear – no major problems show. Which is good – there’s nothing serious going on. But also somewhat frustrating, since it doesn’t show what is causing the lingering pain I feel in my ribs on my right chest. I see my doc next week to discuss things, but mostly I think it will be a matter of just dealing with the pain and getting on with life. Best guess is that it’s probably some kind of muscle/tendon damage that can’t completely heal because I keep breathing. And I’m not willing to stop doing so in the hope that the pain will go away.
But the real news is that yesterday we filed the paperwork with the Missouri Secretary of State to form “HFY Publishing, LLC.” Yeah, on April Fools Day. Seemed appropriate.
No, seriously, while this is a small and largely symbolic step, it was an important one. An even more important one is that I’ve now heard from all of the beta readers, and gotten some very valuable feedback. We (my co-author and I) need to expand the introductory material of the book, to better explain how and why the book is structured the way it is and how to use it to best advantage. We also need to tweak the layout of the book for clarity. Neither of these are major changes, and we should be able to get them sorted in the next week or so.
Well, that gets everything up to date, I think. Now time to go do some home repairs.
Jim Downey
Gotta love it:
Except for the accent, this guy reminds me so much of my step-brother Patrick. He was always doing wildly insane but pretty cool crap like this.
Needed a chuckle, after being subject to more abuses of the medical-test variety this morning. Just a CAT scan trying to sort out the ongoing pleuritic pain, so nothing to worry about. Still, having to stay off coffee until after the test was annoying, and the above vid helped.
Jim Downey
Got a call Sunday afternoon – old friends K & L with whom we are in sporadic contact were in town, wanted to get together sometime this week, if it was convenient.
In the course of the conversation it came up that they had just realized that L’s mother, who lives alone here, wasn’t just experiencing the normal forgetfulness of advancing years. No, there were clear signs of something else going on: age-related dementia.
Ah.
I discussed it with my wife, Martha. We made arrangements to get together last night. Fortunately, the local Alzheimer’s Association chapter was having a support group meeting for care-providers early evening.
* * * * * * *
Yesterday was . . . difficult. I was distracted by the latest news from Japan. We had some information about a legal tussle we’re involved with which wasn’t very encouraging. I was hurting a bit (residual problems related to the pneumonia which I have been struggling with these last months). Work on editing Her Final Year was slow.
But come the early evening, we got together with our friends. Drove to the Alzheimer’s Association building. My wife and L stayed for the support group meeting. My buddy K and I went out for a beer.
We chatted. He knew that we had taken care of Martha Sr through the arc of Alzheimer’s. He knew that I had been working on a care-giving book. He needed someone to talk with.
* * * * * * *
Later, all of us wound up back here at the house, talking. Martha and I discussed with them where L’s mother was in the progression of the disease (very early), offered advice on the steps they need to take right now, what they should be thinking about further ahead.
K & L are both intelligent, well educated, professional people. They listened to our advice, asked the right kinds of questions, were already thinking through the necessary steps and how to resolve them. We offered suggestions on local resources (part of the reason why we wanted to make sure they got in contact with the local Alzheimer’s Association). We discussed some of the experiences we had, problems encountered, ways we did or did not resolve them.
It was a good conversation. They were both coping, but clearly a bit stunned by the suddenness of everything.
They left, after we made tentative plans to get back together with them tomorrow or Friday, depending on how things go. They’re going to want to have someone to talk with again about this, after they start getting into the nitty-gritty. Even if they don’t realize it yet.
* * * * * * *
This morning on our walk, Martha and I discussed last night. She observed that K seemed a little more out of his depth than L was. We chatted about possible reasons for this. Perhaps it was due to her attending the support group. Perhaps it was due to the fact that L had seen her grandmother struck down by Alzheimer’s. Perhaps it was simply due to the fact that typically, more women are used to being in the role of care-provider, and so tend to think in terms related to that.
The comment jelled something in me that I hadn’t quite yet put entirely together: the realization that there is a solid likelihood that if things go well, it may be that the most important thing I can accomplish in this life will be to raise awareness among men that they too should be thinking in these terms. That their parents, their spouses, are just as subject to age-related dementia. That watching for the signs, preparing for the possibility, is something that they should get used to.
I would never have predicted that this would be an important milestone in my life. Perhaps the most important.
Funny how life is, isn’t it?
Jim Downey
The editing continues. I’m making real progress with it, should be done in another week or so. Preliminary feedback from the ‘beta readers’ is positive.
And it couldn’t come too soon:
Almost 15 Million Americans Now Caring for Loved One With Alzheimer’s
TUESDAY, March 15 (HealthDay News) — Nearly 15 million Americans are caring for someone with Alzheimer’s or another form of dementia, and the number is rising, according to a report released Tuesday.
“People with Alzheimer’s who are otherwise healthy may live as long as 20 or 25 years,” said William H. Thies, chief medical and scientific officer at the Alzheimer’s Association, which is publishing the report in the March issue of its journal, Alzheimer’s & Dementia. “These are individuals who need increasing levels of care over time, and that can be very difficult for families.
About 5.4 million people in the United States have Alzheimer’s disease, and their 14.9 million caregivers provided a total of 17 billion hours of unpaid care, valued at more than $200 billion, according to the report, which also highlights the physical and emotional burdens that caregivers face every day.
The full report can be found at the Alzheimer’s Association.
Jim Downey
Communion Of Dreams 