Communion Of Dreams


Caring for demented America.

The eighty-something man fumbled with the pocket knife he had carried his whole life. His hands trembled with age, rage, and fear, but if the hulking stranger refused to leave his house, well, then by God he’d force the man to leave!

The stranger easily took away the knife, and told the man to go back upstairs. Then he sat down on the mechanic’s stool next to his motorcycle and began to weep.

I was about 14, and had just witnessed age-related dementia for the first time.

The hulking stranger was my uncle, whom I had come to live with. The elderly man was his grandfather. We were at his grandparent’s home, using the garage under the house as a warm place to get a little work done on his bike. He and his grandparents were close, always had been. He had lived with them for a while when he was young.

* * *

President Trump is certain that he was cheated out of a popular election mandate due to voter fraud. Almost no one else agrees, and even members of his own party who are responsible for elections at the state and local level have said that there is virtually no evidence of actual fraud.

The President has also claimed that his inauguration had more people in attendance and watching around the world than any previous. The best evidence and estimates available from multiple sources do not support this claim.

I could go on.

* * *

I remember Martha Sr getting fixated on things which were weird, unpredictable. Fixated in such a way that no matter what we tried to  say or do, she was certain that we were wrong. Or just lying to her. Or something.

It was almost always some strange idea or memory or object which would catch her attention seemingly out of the blue and often at the most inconvenient times. The idea that the strawberry seeds in her yogurt were necessary for completing a crossword puzzle, so she had to pick them out and keep them. Or that she was going on a train trip, and had to make sure to go get her tickets right now. It drove us completely nuts, and was one of the more difficult challenges of being care-givers. We’d try to distract her with other things, or explain that we already had her tickets and she didn’t need to worry. Sometimes that worked. Sometimes she’d go on and on and on about whatever it was which had captured her attention, returning to it for days on end.

* * *

In the aftermath of the presidential election, many people who had supported Secretary Clinton were shocked, stunned, at the outcome.

Some started looking for ways to challenge the results. First there was an effort to get the Electoral College to not affirm Donald Trump as the winner, on the basis that Russia had influenced the election. Then there was a hope that the House of Representatives would not confirm the results of the Electoral College vote. Then there were challenges made to whether President Trump could hold the office, since he was in violation of the Constitution.

I could go on.

* * *

It seems like the long-respected norms of civic behavior are finally starting to break down. They’ve been stressed for a very long time, like a marriage which has gone badly wrong, but is held together out of fear for what would actually happen if one partner were to confront the other over perceived slights or suspected betrayal.

But now someone has had enough, and said words which cannot be taken back.

The shouting, the screaming, the breaking of china in anger and frustration has begun.

Young children stand in the doorway to the kitchen, tears streaming down their face, unsure what this means or what will happen next.

* * *

Someone punched a neo-Nazi. Plenty of people cheered. It’s hard not to cheer when Nazis get punched.

The day after the inauguration, millions of people marched in protest of the new president and his administration. Plenty of people cheered. It’s hard not to cheer the affirmation of civil rights and political empowerment.

The day after that, a top-level presidential advisor ill-advisedly used the term “alternative facts” when disagreeing about the turnout at the inauguration. Plenty of people jeered at her for doing so. It’s hard not to mock something straight out of 1984.

The day after that saw the start of a number of Executive Orders and memoranda signed by President Trump, putting into motion the changes which he and other members of his party had promised. Plenty of people cheered to see the change they wanted starting. Plenty of people jeered both the spirit and the letter of the changes.

* * *

I’m not saying that President Trump has age-related dementia. Not even the first signs of it. I’m a bookbinder, not a doctor, and am in no way qualified to make such an assessment.

And I’m not saying that the rhetoric and actions from those who oppose the new administration are equivalent to the rhetoric and actions of those who have supported it.

I am saying that things have changed. I think that we are on the precipice of something akin to Heinlein’s “The Crazy Years”. Things have changed so much, and so quickly, that I have had to go back and make substantial revisions to St Cybi’s Well. Because what before was a challenge to the reader’s ‘suspension of disbelief’ has been completely superseded by our reality. It’s not the president who is showing signs of dementia — it’s our society.

And I am saying that when you accept and embrace the use of violence against a political opponent, you open yourself up to the use of violence against you by your political opponents. Because there are always justifications and rationalizations for such use, and human history is filled with the resultant wars civil and decidedly uncivil. Be very careful what you wish for.

Jim Downey

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Penny for the Guy?*

Hmm. Perhaps it’s time to invest in companies which make those Guy Fawkes masks

Even better, we can set up an investment fund which holds stock in companies which make yarn, knitting needles, Maalox, poster board, magic markers, etc. Just to hedge our bets, it should also look at firms which deal in security consultation, drones, police & military equipment, private prisons, and so forth. Pity there’s no way to own stock in the ACLU.

Oh, and I wish I held the copyright on 1984

Who’s in?

 

Jim Downey

*



I hate to say ‘I told you so’, but …

Last week I wrote the following excerpt from St Cybi’s Well:

Megan came out of the bedroom, dressed, but still toweling her hair. “Done. Bathroom’s all yours. What did the BBC have to say?”

Darnell glanced over at the stereo system, then back to her. “The government is asking people to just stay home if they have any indications of illness. There’s talk of a week-long ‘bank holiday’, so people don’t go in to work or school; we’ll probably hear more about that later today. And there have been more anti-immigrant riots in London and some other places. And not just the so-called ‘Tommys’.”

“People are frightened.”

“Yeah, no surprise.” Darnell nodded at the stereo again. “There was also some science reporting about VCS [Viral Cytokine Syndrome, which is the initial name for the spreading illness] itself. Looks like it is caused by a flu strain which is similar to the 1918 virus, but one which is even more virulent.”

Megan paused, her hands lowered. The towel hung limply by her side. “Didn’t that kill millions, world-wide?”

“Yeah.”

“And this looks to be worse?”

“Yeah,” Darnell repeated. “This seems to spread just as easily, but kills faster. Well, kills healthy adults faster – that cytokine storm thing, which is basically the immune system going crazy, creating high fever and complete exhaustion. Anyone who is young, or old, or otherwise has a compromised immune system, can get the flu and there’s a good chance that they’ll develop pneumonia which can kill them in a week or so without proper treatment.”

“But there are treatments for pneumonia.”

“There are. And even some things that can be done for someone with Cytokine Syndrome, if you get to them soon enough.” He sighed. “But how well do you think the health system here or anywhere will be able to handle such a fast-moving epidemic, particularly if health workers are among the most vulnerable group? Do you remember how devastating haemorrhagic fevers like Ebola have been in isolated areas, because health workers are often among the first victims of the disease? And those require direct contact with bodily fluids … this flu is airborne.”

Today, from NPR’s coverage of a new global health risk report:

Sands says the Ebola outbreak of 2014-15 was a wake-up call. It showed that the world is not prepared to deal with a rapidly spreading disease.

“The alerts were raised too slowly. Local health systems were quickly overwhelmed. The international response was slow and clumsy,” he says. “We lacked many of the medical products we needed, either therapeutic or vaccination or indeed even effective diagnostics.”

* * *

If an outbreak like the Spanish flu of 1918, which killed more than 50 million, were to happen today, the economic damage would be in the trillions of dollars. And the psychological toll could make things worse. Sands says news of a deadly, highly contagious pathogen could prompt people all over the world to panic.

“We are much more connected not just physically but by media nowadays,” he says. “Hearing about and seeing infectious disease outbreaks on TV can spread fear even more rapidly than the disease itself. That in turn can grow changes in behavior and policy which magnify the economic impact.”

*sigh*

 

Jim Downey



Just one problem …

She stood there before the large table at one end of the closed hanger. The whole space was brilliantly illuminated by the lights high overhead, but additional work lights illuminated the piece of debris on the table from several additional angles, so that there were almost no shadows cast. The white paint had been abraded. There were smudges of something like algae here and there.  Barnacles were clustered along joints, where they could get purchase either on the flaperon itself, or on other barnacles which had attached before them. There were even bits of seaweed, still drying.

“It looks fine to me. I mean, just what I would expect after more than a year in the ocean.”

“Yeah.”

“So, it’s from Flight MH370. What’s the problem? Why’d you call me in?”

The man handed her a clipboard containing a paper report. She took it, glanced at it. “I don’t read French. What’s it say?”

“Well, among other things, the barnacles are dead.”

“I guessed that from the smell.”

“Yeah, but what’s interesting is that the lab determined that the barnacles were more dead than they should be. I mean, they had been dead longer than expected.”

“Oh? Why? What killed them?”

He reached out, as if he were going to touch one with his gloved hand, then thought better of it. He continued to look at the encrustations. “Starved to death. Seems they couldn’t digest the plankton there off of Réunion.”

“Why not? That’s where the barnacles are from, aren’t they?”

“Yep. That’s exactly the type found there.” He turned to look at her again. “Just one problem: these barnacles can only digest left-handed proteins.”

She sighed, looked down at the clipboard out of habit, even though she knew she couldn’t read what was there. Then she looked back to the man. “Mirror lifeforms. Dammit.”

“Yeah.”

“And they promised — PROMISED — that this wouldn’t happen again! OK, I’ll alert the Council.”

“Thanks.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tomorrow is the first of the month, and both Communion of Dreams and Her Final Year will be available for free download all day tomorrow.

 

Jim Downey



Promising developments.

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:

About Alzheimer’s Association TrialMatch®

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:

Study: Women with mild memory problem worsen faster 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.

 

Jim Downey

PS: As noted previously, the Kindle edition of Her Final Year is available as a free download on the first of each month.



Knowing what we don’t know.

Two brief news items in the last day or so illustrate just *how much* fundamental knowledge we don’t have about our own biology.

The first is this good article from Wired about building a comprehensive model of the human brain: A First Big Step Toward Mapping the Human Brain

Relevant excerpt:

The Allen Cell Types Database, on its surface, doesn’t look like much. The first release includes information on just 240 neurons out of hundreds of thousands in the mouse visual cortex, with a focus on the electrophysiology of those individual cells: the electrical pulses that tell a neuron to fire, initiating a pattern of neural activation that results in perception and action. But understanding those single cells well enough to put them into larger categories will be crucial to understanding the brain as a whole—much like the periodic table was necessary to establish basic chemical principles.

Consider that: we’re just now really building a good map of how the different neurons interact within one small component of the brain. And not even the human brain, at that.

And this news story, which came as a shock to me when I heard it on NPR: Seasons May Tweak Genes That Trigger Some Chronic Diseases

From the story:

The seasons appear to influence when certain genes are active, with those associated with inflammation being more active in the winter, according to new research released Tuesday.

* * *

Other researchers say the findings could have far-reaching implications.

“The fact that they find so many genes that go up and down over the seasons is very interesting because we just didn’t know that our bodies go through this type of seasonal change before,” says Akhilesh Reddy, who studies circadian rhythms at the University of Cambridge but was not involved in the new research. “And if you look at the actual genetic evidence for the first time, it’s pretty profound really.”

Again, this is a really basic bit of science — akin to understanding how the sequence of gene expression leads to the development of an organism. Learning that your genetic activity changes during the year means that illnesses are much more dynamic than anyone realized previously.

Not to get too Rumsfeldian, but it really is important to know what we don’t know, as seen between the two items above. In the first case, researchers set out to build a model because they knew that they needed the basic knowledge. In the other, it was investigation of a mystery which led to an unexpected discovery.

And in both cases, it’s science at work. And very cool.

 

Jim Downey



Because I was not the President.*

First they flew to watch for illegal immigrants, and I did not speak out—
Because I was not an illegal immigrant.

Then they flew to look for marijuana farms, and I did not speak out—
Because I was not a marijuana farmer.

Then they flew to watch the White House, and I did not speak out—
Because I was not the President.

Then … and then … and then …

 

Jim Downey

*With apologies.