Progress

Tuesday I had what may have been my first actual treatment for the brain rot that has been affecting me for the last four years or so.

My doctor calls it a "study."

The drug company calls it a "phase II clinical trial."

I'll call it, Progress

We (Lyn and I) spent most of the day going through this.  Lyn is an essential partner and participant in the study, required for me to qualify.

Tuesday I had a 3 hour 20 minute intravenous infusion of, well, something, not really sure what. This is the first of a series of about almost 20 such treatments over the next year.

But that was just part of the day.  I also had two EKGs (before and after), several psychological interviews, had eight vials of blood drawn for tests, peed in a jar. two blood pressure tests, and Lyn had a psych interview.

Over the last couple months, to qualify for the study and provide base lines for comparison, I also had exams, interviews, a brain MRI, a spinal tap (and another to patch the leak) blood and urine tests, and an EKG.

So, what am I being treated for, anyway?  That's hard for me to say (and you should have heard my speech therapist asking me three times to repeat it til she got it).

PSP?  What the heck is that?:

My latest diagnosis is something called "Progressive Supranuclear* Palsy" or "PSP." For someone with PSP, that's more than a mouthful. You could read more at this link: Cure-PSP about PSP

If you've seen me lately, you have a pretty good idea.  It messes with the cerebellum, the part of the brain that controls movement. So, I have trouble walking, talking, using my hands, even swallowing. My vision is affected by decreased eye muscle control.  Basically, the brain slowly loses the ability to to control the body.

PSP is grouped into Movement Disorders, of which Parkinson's Disease is by far the most common.

PSP is one of four major categories of "Atypical Parkinsonism," which share some symptoms with Parkinson's Disease:

• Lewy Body Dementia
• Multiple System Atrophy (MSA)
• Progressive Supranuclear Palsy (PSP)
• Cortico Basal Degeneration (CBD)

There's not much to choose among the four.  None of them are anything anybody would choose.  But, as the old joke goes, about the Alzheimer's patient, told by his doctor he had cancer, and then also told he had Alzheimers: "Well, at least I don't have cancer."

On the up side, the Atypicals generally do not include the tremor or shaking typical of Parkinson's.  On the down side,  they usually do not much respond to the carbidopa-levodopa ("Sinemet") that helps a lot with Parkinson's symptoms.  I take it anyway, but it is probably, mostly, placebo for me.  Hard to tell.

There are several other sort of similar brain disorders, including the probably better known ALS ("Lou Gehrig's Disease") of the recent Ice Bucket Challenge fund raising campaign, and physicist Stephen Hawking.

PSP, though rare, is actually a little more common than the better known ALS,  ALS is likely more well known because it tends to strike at a younger age.  The effects of PSP and ALS are similar in many ways.

Alzheimer's is not a movement disorder, but a memory and cognition disorder, attacking a different part of the brain, but by a similar mechanism.  Unlike Alzheimer's, PSP has little effect on memory or thinking.  I have not noticed any such effects yet, though they may come, but if I hurt your feelings, please blame it on the PSP effects.

Few people, even medical professionals, have heard of most of the movement disorders, except Parkinson's.  ALS seems to get categorized differently.  MSA often gets confused with MS, Multiple Sclerosis, which is quite different.

How did I get diagnosed?:

In California, I was seeing "Movement Disorder" specialists at both USC and UCLA.  There did not seem to be much incentive to try to put a specific name to my symptoms, as there are no real treatments for any of them, aside from dealing with the symptoms. My main specialist at USC  preferred to call it simply "atypical Parkinsonism."  When pressed to put a name it, he suggested probably MSA but there are  two or three sub-categories within MSA.

At UCLA, one of their movement disorder specialists thought I might have a different movement disorder, a genetic condition called "spinocerebellar ataxia,"  (another mouthful), but genetic tests pretty much ruled out any of the known genetic Ataxias.

This Spring, the Neuro-genetic specialist at UCLA, knowing I had moved to near Chicago, recommended a Movement Disorder specialist at Rush Medical Center, who she had worked with before and been impressed by, so I saw Dr. Deborah Hall at Rush in June.  Based on eye movements, gait, and speech characteristics, which had all progressed since the move from Los Angeles in the winter, Dr. Hall diagnosed my disorder as PSP.

This particular diagnosis is fairly new, only since June, and I was not convinced at first it was correct.  The fact that I was screened extensively for acceptance into the study seems convincing that it is.  I am just starting to learn more about PSP.  To be honest, I haven't wanted to focus on obsessing about what I may have, or make my condition the focus of my life. I am still learning about it.

So: What's with this treatment stuff?:

It happens that there is some possible recent progress on PSP treatment, due to advances in immunotherapy, using monoclonal antibodies to enlist the body's own immune system to fight the problem in the brain.  You may have noticed this week the Nobel Prize for medicine was announced for advances in using immunotherapy to treat cancer.

The clinical trial I have started is for a drug with the catchy name, ABBV 8E-12, which they are nicknaming ABBVie Arise (catchier).

Two drug companies, ABBVie and Bristol-Meyers-Squibb, are both working on immunotherapy monoclonal antibody treatments for PSP.  BMS also had a clinical trial, but the BMS monoclonal antibody was licensed by Biogen and their clinical trial has been withdrawn at this point, possibly some licensing issue.

PSP is so rare that there is little incentive for commercial drug companies to work on it.  That PSP is getting this attention seems serendipitous.  The general methodology might be applicable to the treatment of Alzheimer's Disease, which is far more common, and is their real target.  But Alzheimer's generally progresses more slowly, and is more complex, so, PSP may be a better test disease for the technology, as results could be measured in less time.  

There seems to be something in the brain cell neurons called Tau protein, that goes haywire in PSP.  Parkinson's Disease has a similar mechanism, but with a different protein (alpha-synuclein). These proteins get "misfolded", clump together, and their neurons die. The immunotherapy attacks the misfolded Tau proteins in between cells, to impede the problem's spread to other neurons. At least, that's the hope.  They have not yet found an immunotherapy for any of the other movement disorders, just PSP.  I maybe got a lucky break on the PSP in that regard.

This clinical trial I have just joined is a double-blind placebo controlled study. Three groups of patients get full dose, half dose, or placebo saline infusions.  Neither I nor my doctors know which group I'm in.  So, there is a 1 in 3 chance I'm just getting 20 doses of saltwater.  The study lasts a year.  I start out getting infusions every two weeks, then after several months, go to monthly infusions.  You can read read more detail on this link: Clinical Trials

After the one year blind study, there is a proposed 5-year extension study that would be "open label" where I could get the drug and know what I am getting.  Assuming, of course, that it actually works at all.

This trial expects to enroll 330 participants at 68 treatment locations worldwide (check for one near you).

Who pays for all this?

This research is astoundingly expensive.  I can only guess at the overall cost, but just for me, just for the screening to qualify into the trial, they paid for a brain MRI, a spinal tap, another spinal tap to fix the leak caused by the first, blood and urine tests, an EKG, and extensive physical, neuro and psych exams.

Each infusion includes the whole set of tests I had this Monday (not the MRI or spinal tap - those get repeated only at the end of the whole trial). Update: Turns out I do get another MRI this December.

This drug has qualified as an "Orphaned Drug," that would treat fewer than 200,000 patients in the US. There are an estimated 20,000 Americans with PSP, but only 5,000 actually diagnosed.  It is hard to diagnose. Orphaned drug research gets some tax breaks (less under recent Trump Administration regulations) because they are unlikely to be profitable.

For me, personally, the drug trial is free.  I don't have to pay for any part of it.  

The drug company is putting up much of the cost. 

Rush Medical Center, and my doctor, get research grants and funding that help pay for some of the cost.

And contributions from organizations like Cure PSP also help with seed money that gets research like this started.

Will it actually benefit me?

Possibly:

• If the treatment actually works (uncertain - that's why they do the double blind study).
• And, if I am in the two groups actually getting the treatment, not the placebo control group.

I'm trying to keep my expectations realistic.

If the treatment works, it would slow the progress of the disease in taking away my ability to move.  It would not repair the damage already done to my brain.  It is unlikely to entirely stop more damage from happening.  But, compared to treating the symptoms while they get steadily worse, that would be a whole lot. 

Even if I am in the placebo group, after a year, if it works on the other groups, I could get it too, so that's reassuring.

I don't think the researchers expect that this would stop the disease entirely. They are cautiously optimistic that it may slow the rate at which new brain damage progresses.

It's Progress; not a cure:

The most likely scenario is that this is a major step toward developing a truly effective treatment.  Whether this actual treatment method works or not, progress is being made, things are being learned, methods being refined, that will help develop better treatments.

A lot more expensive research is needed to get to a real cure for these brain disorders.

A positive is that progress on one brain disorder may help with others.  What is learned with PSP may help with Alzheimer's, and what is learned about Parkinson's may help with PSP.

But, the diseases that affect the most people understandably get the most attention.  Michael J. Fox, Muhammad Ali, and Davis Phinney get a lot of money devoted to Parkinson's Disease, and that's great.  The "atypicals" get the crumbs that fall from the Parkinson's table. I'm not jealous.  The priority for the more common diseases is reasonable.

Still, this immunotherapy treatment is more progress than has been made on any of the other movement disorders.  I'm really excited that that this trial is happening.  Six months ago, I thought there was no treatment at all, just managing the symptoms.

Real, concrete, optimistic, progress.

If you care to contribute:

I have checked out this Cure PSP organization.

This organization is real.  It is efficient.  It is effective.  My doctor goes to its fund raisers.  It really is helping. And it obviously is not spending a lot of money on advertising or self-promotion.

You can donate through my Facebook post here:Facebook post

Or on the Cure PSP Website here: I Want To Help

There's a lot more I could say, but this blog post is already too long.  More some other time.

*(Notice special pet peeve from this old nuclear engineer, that "Nuclear" should be pronounced as it is spelled:  New-Clee-Ar.  NOT:  "Nuc-Yu -Lar".  Likewise it is surpra-new-clee-ar,  Not supra-nuc-yu-lar)

Madness in High Places

King Nebuchadnezzar Turned Into An Animal: unknown German artist, Regensburg, 1410

Daniel Chapter 4 is notable for the repeated dictum that:"the Most High (God) rules in the kingdom of men, and gives it to whomsoever He will." (verses 17, 25 and 32)

That God rules over Kings is clear, but far from being any divine endorsement or authorization of rulers, Daniel 4 is instead a warning to those rulers against pride, hubris, arrogance, presumption, oppression, or misuse of power.

It does not tell believers to assume that rulers have God's sanction, or must be doing God's will because He put them in power.  Quite the contrary:  It tells rulers that they should use any power that God may choose to allow them, with consciousness of God.

It is an instruction to rulers, kings, emperors, to humble themselves before God, or God might choose to humble or remove them.

The narrative of the chapter is a familiar Sunday School story, written by Nebuchadnezzar himself.  Nebuchadnezzar had a troubling dream and called for Daniel to interpret it.  The dream was of a great tree, which was cut down to a stump.  Daniels's interpretation was that this great King Nebuchadnezzar would be cut down, mid reign.

Daniel's interpretation concluded with Daniel's appeal to Nebuchadnezzer to change his arrogant ways (verse 27):

 "Wherefore, O king, let my counsel be acceptable unto thee, and break off thy sins by righteousness, and thine iniquities by shewing mercy to the poor; if it may be a lengthening of thy tranquillity. 

Nebuchadnezzar seems to have taken the warning at first, but after 12 months, his pride got the better of him: 

"The king spake, and said, Is not this great Babylon, that I have built for the house of the kingdom by the might of my power, and for the honour of my majesty?" 

That declaration of hubris triggered the nightmare scenario.  Madness descended on Nebuchadnezzar, and he became like an animal, unable to reason.  The Kingdom was taken from him.   He was driven out to "dwell with the beasts," unclothed, hair like eagles' feathers, nails like birds claws, for seven "times" (possibly seven years).

After those "seven times" of madness, living with the animals, Nebuchandezzaar's reason and kingdom were restored, and he was able to write the remarkable first person account.  He concludes:

"And at the end of the days I Nebuchadnezzar lifted up mine eyes unto heaven, and mine understanding returned unto me, and I blessed the most High, and I praised and honored him that lives for ever, whose dominion is an everlasting dominion, and his kingdom is from generation to generation:  And all the inhabitants of the earth are reputed as nothing: and he does according to his will in the army of heaven, and among the inhabitants of the earth: and none can stay his hand, or say unto him, What doest thou? At the same time my reason returned unto me; and for the glory of my kingdom, mine honor and brightness returned unto me; and my counsellors and my lords sought unto me; and I was established in my kingdom, and excellent majesty was added unto me. Now I Nebuchadnezzar praise and extol and honor the King of heaven, all whose works are truth, and his ways judgment: and those that walk in pride he is able to abase."

So, Nebuchadnezzar learned that kings and rulers should not get too big for their britches, lest they wear none.

He learned that God rules, and can give kingdoms, or take them away, set up kings, or cut them down, at His whim, and none can question God's doings.

He learned that a claim that "I built this," tempts God to prove that, no, he didn't.  God gave it him, and could as easily take it away.

Does this chapter tell us that every king, every ruler, every president, governor, prime minister, of every nation on earth for all time is individually selected, appointed, ordained, authorized, by God, as part of a minutely detailed, pre-ordained, exact plan?   I do not think so.  I don't read that into it.  God can set up or remove anyone He chooses.  He certainly has that power.  God also has options, adapting to the free will choices people make.   But to take the book of Daniel as being typical of how God works with all rulers, would carry the story way beyond it's lessons.  It would take away any free will among the nations.  We would all just be marionettes, dancing on God's strings.  How far down should we carry that?  Is it only at national level, or God being in control, would He not govern at the state and local level as well? Is every election outcome of every school board pre-ordained?  What about within the church?  Does God select the doorkeepers of every congregation, or does He expect us to practice some discretion?

I have been shocked and appalled lately to hear preached from church platforms that we should not criticize unrighteous presidents, because "God rules . . . and gives it to whomsoever He will."  Even worse, they have defended wicked rulers as God's chosen agents, doing God's will. That God allows "the basest of men" to rule, should never be taken as evidence that God actually desires unrighteous rulers.  Israel demanded a king, and God gave them one, but He rebuked Israel for wanting one and warned them of the consequences. Israel's demand was a rejection of God, but the lesson is, be careful what you ask for.   The Old Testament is one long account of God's repeated condemnation of ungodly, unrighteous kings, as virtually all of them are. If our consciences are so seared that we no longer care about the wicked example set by those basest of men, we are in trouble.

Most political issues should be of little concern to believers.  We know that God does rule.  All that we may have is God's gift.  We did not build it, and need not concern ourselves with defending it. The immorality of unbelievers is not our affair.  This does not justify us sitting idly by, but warns us that we too must "break off thy sins by righteousness, and thine iniquities by shewing mercy to the poor;"

I should also point out that the prophet Daniel was far from an apolitical disinterested bystander.  Quite the opposite.  Daniel was in a highly political position, as ruler of the province of Babylon, and in charge of all the king's counsellors:  A political position that made Daniel and his associates the objects of repeated political plots to destroy them.  I would hesitate to carry that too far as an example to us, but those of you who claim to understand and interpret visions of the future, like Daniel's, might want to warn the president about hubris.

It seems to me that the real lesson we should take from Daniel chapter 4 is that God's "plan" depends on no one.  Human rulers, kings, presidents, nations, empires, armies, are all inconsequential.  There is no individual upon whom God (or his plan) depend.  Trump/Biden?  Makes no difference to God.  Americans, in their nationalistic pride, may be foolish enough to think God would somehow feel that our petty politics are important, but to God, presidents are freely interchangeable.  There is nothing that only one person could or would do that no one else could do. God can replace anyone, anytime, for any reason, at His whim. Rulers: Don't get impressed with yourselves. To God, you are nothing. Rulers who get too proud, invite God to humble them. Take warning.

Is Facebook's formula limiting you?

THIS WORKS BETTER! 

Wondering about all those posts about Facebook's formula that limits who you see in your feed? (see note 4) Here's what you can REALLY do: See the menu bar up at the top of your phone screen? Click on the three horizontal lines icon (circled). Then look down the list and see where it says: "Friends." Clicking on Friends brings up the list of your friends.

(If you are using Facebook on the website version, click on your own name up there at the top to bring up the page where you can see the Friends button)

Now, scroll down your list of friends. See if there is someone there you don't recall seeing on Facebook for a while. In my case, I had to scroll a long way down to find people I haven't heard from recently.  This will either disprove the "25 friends limitation," or show that you just don't have many friends active on Facebook.

When you do find someone you haven't heard from recently: Do you know if they actually use Facebook regularly? Are they still alive? In jail? Found more productive uses for their time?

To find out, click on one of those Friends you have missed lately. Scroll down to see their posts. Have they actually posted anything in the last 6 months? If so, do this: Read some of their posts and post comments on them. Like their grandchildren. Laugh at their jokes. Comment on their trip to Europe. But, most likely, if you haven't seen them on Facebook, it's because they haven't been on Facebook. Most likely, those 25 friends you keep seeing are the ones actually using Facebook. (also see note 2 below)

Alternatively, if you still don't trust Facebook, try this: Make a shallow aluminum foil bowl (note 1). Put it in your lap. This will focus energy waves up toward your phone (and away from sensitive areas) Hold down that "Friends" button on your phone. Wave the phone over your head making 7 circles, clockwise in the northern hemisphere, anti-clockwise in the antipodes.. On each circle, recite "Expelliarmus!" No promises about this procedure, but it is undoubtedly at least as effective as that copy and paste thing going around. Rumor has it, this works best at midnight on a full moon.

Or, if you really want to make a radical change in your News feed, go down that list of Friends. Find the ones who fill your feed with whatever unwanted political, religious, nutritional, or commercial posts you happen to dislike, click on their name, and then change them to "Unfollow." You will remain friends, but won't see their posts unless you go looking for them. That could clear out a lot of room for more aging school chums, kids, puppies and kittens, or whatever you do like seeing.

To avoid Facebook's news feed algorithm altogether, in that highlighted pull down menu , there's a feed option for 'most recent'. Then you can see the order things have been posted instead of what's popular, most liked, or trending.  On my tablet, I would press that Menu icon, then "See More," then select "Feeds" then select "Most Recent.". That gets you posts shown in order of posting, without regard to responses or relevance.

If any of these ideas work for you, or if you are at least mildly amused, please Like and Share this post. Or, you could do that whole copy/paste thing with this post: Hold your finger down anywhere in this post and "copy" will pop up. Click "copy". Then go to your page, start a new post and put your finger anywhere in the blank field. "Paste" will pop up and click paste. You will pass Go, Collect $200 from the IRS (note 3), hear from old friends, make new ones (perhaps at the IRS), and change your life! Really! It worked for me! Try it!

-----------------------------------------------------------

Notes:

1. In lieu of making a bowl out of aluminum foil, if you have an aluminum colander, that works equally well. But a steel colander? Stainless steel, I hope, otherwise it would rust. The magnetic properties of the steel (and possible rust) cause an added unknown factor, which might or might not effect the exorcism process. 304ss vs 316ss could make a difference.  Be sure not to put the colander on your head, inverted, like a hat.  That would totally negate the effect, and might also be joining the Church of the Flying Spaghetti Monster:  COTFSM

2. If haven’t seen any posts recently from Santa Claus, the Easter Bunny, the Great Pumpkin, or the Tooth Fairy, and would like to,. Try Friending them..  Supplementary instructions for friending Santa Claus et al: Type their names in the search box on the bar at the top of your screen. Click on one of the results. Send them a friend request.

3. Be aware that the $200 IRS rebate may not apply outside the US. Consult the you tax authorities for local participation.

4. In case you haven't got it yet, that whole Facebook formula friends limitation think is a myth.
Check out these links  Snopes - Facebook formula  WTOP article   Business Insider article

I stood for the National Anthem the other day

I stood up for the playing of the National Anthem, the other day.  It was at a high school track meet where my grandson Andrew was running.  No big deal.  It's the custom.  I always have. Wasn't intending to make any sort of "statement,", just standing up out of custom.  Not expecting to cause the reaction it did.

Well, I guess it was a little different, using a wheelchair and sitting in the handicapped section in the front row.  I'm not a front row kind of guy.  I rationalize that tall people like me should go to the back, where we don't block the view of short people, (like my wife, which makes seating decisions schizoid in our marriage, but that'a another tale).  Truth be told, I like back rows because I feel more comfortable fading into the background. But folks in wheelchairs don't always have a choice.

So, they started playing the National Anthem, recorded, sort of suddenly, and I felt I should stand up, because I could.  The wheelchair is faster and safer to get around outside, but I normally use a walker to get around the house.  My wife was trying to get me to stay seated, and I was trying to hand her the jacket I had been using as a lap robe.  There wasn't anything in front of me to steady myself on.  I got to a mostly upright position.  Held my wife's hand to steady myself.  My daughter behind me was hanging onto the back of my waistband.  I didn't quite dare spare a hand to take off the knit cap I was wearing because of the cold.  And then it was over, and I sat back down, to the relief of my wife and daughter.

Didn't think much of it, until a few minutes later, a gruff guy came up to me and said, with an obvious catch in his throat: "Thank you. I've never been so impressed in my life," and stuck out his hand to shake (which I took, with my gloved hand, feeling a little embarrassed).  Later on, he talked to my daughter separately.  She related the conversation.  He asked her if I was her dad.  Said he had been a Marine and a cop, and how impressed he was that I, with my handicap, managed to stand, while some millionaire athletes won't.

Those of you who know me know that I am not the most patriotic of Americans.  I always thought Christ supersedes nationalism.  You know, that whole "Neither Jew nor Gentile . . . but all one in Christ Jesus" thing.  I pray daily for God's Kingdom to replace the nations. If we had the Pledge of Allegiance that afternoon, the fellow might not have been so impressed: I normally do stand for both, but abstain from the Pledge, feeling that my allegiance belongs to God alone, a conclusion I came to back in school, somewhere in junior high or high school.  But I do stand for the national anthem.  I feel it is right to stand when asked to do so, to respect the symbols of the nation that has given me the freedom to practice and preach my unorthodox, unpatriotic religion; a nation which gave the space of freedom and dissent where that religion could develop.  I respect those who risk their lives to serve in the military, even though I see Christ's teaching as recommending a non-violent alternative, and I respect this country for allowing me to live as best I can according to my rather different beliefs.

I didn't tell that fellow that while I do stand, I also respect the courage and principles of those who do not.  I think it takes more guts to kneel in front of a crowd in protest, than to go along with crowd by standing, even from a wheelchair.  I don't think what I did was anything special.  I think risking one's multi-million dollar career to make a point about perceived injustice to others less privileged, deserves far more respect.  But I didn't say that. The brief encounter didn't suggest it was an appropriate time for those details.

Being a dissenter from "mainstream" religion gives me more reason than for most to respect America and be grateful that I live here.  Now days, many countries offer similar freedoms, but when this country was founded, such freedom was new and rare.  My view of true American values is that what makes this country special is the degree to which it respects, even somewhat welcomes, non-conformity. One thing that is great about America is that it protects dissenters and protesters.

America isn't great because of people waving the flag, but because, to at least some extent, people are allowed not to.  America is special precisely because we are not compelled to stand for the National Anthem, salute the flag, or recite the Pledge. If people felt coerced or compelled to stand, it would devalue the act. Coerced respect is not respect at all, just conformity.  Worse, it would take away from the very freedom one is supposedly saluting.   I expect even that Marine and cop would agree that he served to protect that freedom, even if he disapproves of those who use it in that way.

Having the freedom to sit or kneel is worth standing up for.  Perhaps, though I didn't think about it that way at the time, I stood for the National Anthem that afternoon, because I did not have to.

Thou Shalt Not Bear False Witness: The grievous sin of false Facebook posting

Exodus 20:16. "Thou shalt not bear false witness against thy neighbour." 

This is the Ninth of the Biblical Ten Commandments: Right up there with murder, theft, adultery and idolatry.

Yet every day on Facebook, I see posts, from people who claim to reverence the Ten Commandments, that copy false accusations and slanders.  I won't cite specific examples. There are too many, some obvious, some subtle. There are more every day, mindlessly copied and shared without checking by many people, simply because they attack people they dislike.  This is false witness.  It is spreading malicious lies to slander someone.

In John 8:44, Jesus says that the devil is the father of lies.  The word "devil" is an English form of the Greek word "diabolos" which actually means: Slanderer, False accuser.  So, when you post a false accusation, you are quite literally the devil.

By contrast, Jesus said:  "I am the way, the TRUTH, and the life," so if you want to follow Jesus, you must follow truth.  If you follow lies, you are not following Jesus.

But, you say, you didn't realize it was false!  Is ignorance a defence? No, it is not.  If you spread accusations that you don't really know to be true, it is still bearing false witness.  But anyway do you really want to claim ignorance?  If you don't know what you are talking about, why are you posting?  Why post in ignorance?  All you do is prove your ignorance.

Spreading malice in ignorance is gossip. The Bible condemns gossip in the strongest terms.  Romans 1:29 says this about the Godless: 

 "so God gave them over to a depraved mind, so that they do what ought not to be done. They have become filled with every kind of wickedness, evil, greed and depravity. They are full of envy, murder, strife, deceit and malice. They are gossips, slanderers, God-haters, insolent, arrogant and boastful; they invent ways of doing evil."

See who gossips are grouped with?

There is simply no way to reconcile careless posting of accusations with Christian ideals.  It is anti-Christian.  If you are going to make accusatory posts, you have a Christian obligation to at least make sure they are true.  If you can't take time to check before you post, don't post.  If you check, make sure you check reliable sources, not just the same scurrilous partisan echo chamber sites that pump out the lies. And, if you believe those slanders against Snopes, you have already been deceived by the devil.  If you don't know how to check it, or just don't want to bother checking, just don't post it. It's sinful.

But, what about "harmless" non-accusatory memes? They may make a claim, or just be a "cute" photoshopped picture, with, or without, a fake story.  What's the harm in sharing?

The biggest harm may be to your own reputation.  Do you really want to be thought of as that credulous, gullible person, with a loose grip on reality, who can't tell real from fake, fact from fiction, Truth from lies, news from propaganda?  Because that's the inevitable result.

The other BIG problem, is that we get so swamped by fakes that fake vs. real has ceased to be important.  Facebook is so overrun with fake memes, it has turned into Fakebook. The falsehoods are so dominant, that it is tough to wade through all the nonsense.   Russian troll factories flood us with it.  Politics, which always was a dishonest business, has now become virtually Fact-Free.  And social media has to bear much of the blame. Set a better example. Have a higher standard.  We should value Truth, above all.  Without it, we live in a fantasy world, and not a pleasant one.

You can't teach truths unless you value truth.  Facts matter.  The very first question to ask is:

Is It True?

What YOU can do about gun violence

It is astonishing that some people think the solution to guns and violence is more guns and violence. America is far and away the most armed nation in the world: Over 300 million guns in the US, belonging to 100 million or so Americans. Over 40% of the civilian guns in the entire world are in the United States.  50% more guns per capita than the next most armed nation. The American experiment has conclusively proved the obvious: that guns do not prevent violence.

To be fair here, despite that arsenal, America generally has a remarkably safe record of gun ownership. Only 30,000 deaths per year, with 300,000,000 guns, means less than 1 in 10,000 get used to kill someone in any given year, a pretty good ratio, one might say. So, the vast majority of gun owners have a reasonably safe hobby.

But, hobby is all they are.  Guns have no real use or value for honest civilians. None. They are killing tools. That's all. Very dangerous weapons that do in fact kill people, and have no useful purpose in civilian hands. I could elaborate on that, but that's another essay. Regardless, this isn't going to change any time soon.  Nobody is going to get those gun owners to give them up. Not gonna happen.  No use even thinking about that.

A few bad or mad individuals, that small fraction of a percent, creates a lot of carnage.  The culture that glorifies gun violence, that glorifies the stereotype of the lone hero gunman, seems to be a lot of the problem, but pinning it down to any one thing is futile.   Guns don't protect you; they kill you. Having a gun in your house actually multiplies your odds of you or a family member being the victim of gun violence, whether by accident, homicide or suicide. There is a faint chance you might be able to use your gun to defend yourself. There is a far greater probability that you or someone else will use that gun against you or a member of your family.

Guns are like cigarettes: legal, lethal and stupid. Until the country recognizes that, we will continue killing ourselves with both. You have the right to both, if you are foolish enough. It may not be coincidence that firearms, tobacco and alcohol regulations are all enforced at the Federal level by ATF.

You can stand on your rights and argue that laws don't solve anything.  Maybe you're right - until people change, no law could take away enough of those 300 million guns. Like I said, not gonna change any time soon, and not my concern to even try. Quite honestly, I have to concede that I have yet to see any laws proposed that seem likely to have a significant effect on the carnage.

So, what can you do?  Don't worry about the 300 million guns out there. They aren't going away.  Just worry about the ones most likely to hurt you: Any in your own house. That is what YOU can deal with.

This is not political. I am not about politics or laws or trying to make people behave. I support no political party or politician.  Gun rights folks often assert that criminals do not obey laws. That is truly total nonsense, but I actually agree that changing people, not changing laws, is what is really needed.  You can't change anyone but yourself. So, start there.  So, change.  Start with seeking out the violence in your own heart and fighting it. This an angry and violent nation. Don't participate in that, even emotionally.

But you can go farther: You want to defend your family. The most effective way to do that is to keep guns out of your house.  Don't allow guns in YOUR house.  Don't voluntarily be in the presence of anyone else with a gun. If YOU own guns, destroy them.  I'm not suggesting taking away your useless "right" to own guns if you are so foolish as to want them.  I'm suggesting you take the personal responsibility to renounce guns. That won't stop gun violence, but it's one small step in the right direction.  It won't solve the problem, but at least then, YOU won't BE the problem.  At least then, it won't be YOUR gun that is used in the next slaying.  It won't be YOUR family member who goes crazy and kills people with your gun. It won't be YOUR gun that is stolen and used to commit crimes. It won't be YOUR gun that is found by a toddler with tragic results.  Or, most common of all, you or your loved one, in a moment of desperation, will not use YOUR gun to commit suicide. At least then, YOU won't be supporting the gun culture or the gun industry, an industry of death. Then YOU, or a member of YOUR family won't be the next angry white man whose suppressed rage erupts into mass shooting.

I haven't actually seen these signs available, and I don't post slogans in my yard, but I would have not the slightest hesitation to making it clear that my home is gun free.  I don't for a minute think that burglars are restrained from my house by the fear that I might be armed.  Canadians don't seem to have a worse burglary problem than Americans.  Guns are a desirable target of burglars, so they can go elsewhere looking for them.  They may as well know that we aren't gonna have a shootout over my TV.  It's insured, and getting a little old anyway.  My home is (humbly) gun free.

Luckier Than Lou Gehrig

I always used to wonder how Lou Gehrig could say in his famous July 4, 1939 farewell speech to the New York Yankees, after having been diagnosed with ALS, a cruel disease that came to be named after him, that:

"Today I consider myself the luckiest man on the face of the earth." 

Lou Gehrig's speech

How could any man facing such a near and difficult death consider himself lucky?

But now, having myself been diagnosed, not with Lou Gehrig's disease, but with some similar neuro-muscular condition, I do think I understand, and agree.

I'm still not completely sure what I have. It falls (as do I, frequently) under the general heading of a "movement disorder."  My symptoms don't exactly fit the classic definition of any of the possible diagnoses.  My doctors tell me what I don't have. I had every test the doctors could imagine, and none of them showed anything.   I don't have ALS, or MS, or Parkinsons, or Alzheimers, or Muscular Dystrophy.  I don't have a brain tumor or cancer.  One doctor thought it might be Ataxia, but the other disagrees.  They all say I don't have Hydrocephalus. They all say it's not brain damage from my cycling concussion.

Tentatively, maybe it might be something you've likely never heard of called Multiple System Atrophy (MSA) though my symptoms differ in several ways from how MSA is usually described. There's a whole list of vaguely similar neurological conditions that you've likely also never heard of, but I probably don't have those either.  It's some kind of deterioration of the cerebellum (not the cerebrum).  Whatever it is, my brain seems to be slowly losing control over my body.  And, whatever it is, there is at present no real treatment. In fact, the diagnosis doesn't really much matter as there is no real treatment for any of the likely possibilities. 

There's also not much in the way of prediction or prognosis.  As my doctor says, we know that it progresses, but otherwise we can't really predict much. Lou Gehrig lived two years after his ALS diagnosis. Stephan Hawking has lived over 50 years since his ALS diagnosis, married twice, fathered 3 children, wrote books, did physics, and still gets bit parts on the American TV sit-com "Big Bang Theory." So, these diseases are not very predictable.

But, here's the point:  I, like Lou Gehrig, can't help considering myself lucky.  I guess I could get into a "why me" or "woe is me" attitude, but that would be fake. I just don't feel that way about it.  It would be a totally wrong summary of my life and my circumstances.  Lou Gehrig died at the young age of 37. I am now 68, and will most likely make it in some fashion to the Psalmist's proverbial allotment of "threescore and ten" (that's 70, for those of you who don't know the score).  So, in quantity of life, I really have nothing to complain about. Sure, I always imagined that I would follow my parents in living into my early 90's, but life is not about quantity but about quality, and I have had a GREAT life. I would not trade these 70ish years for 100 of some other life.

I can only hit a few of the highlights here that have contributed to this great life I have lived.

I was born to wonderful parents and great family in a wonderful community. I was blessed that my ancestors immigrated to America, and to California.  

Although merely middle class by the standards of this country, we were, and are, rich by the standards of the world as a whole. If we aren't in the global top 1%, we are close to it. As they say, if you have to be a cripple, it's better to be a rich one, and I consider myself rich.

Certainly by the standards of any previous generation in human history we have comfort, leisure, ability to travel, and houses and driveways full of magical things that do the drudge work, entertain us, transport us, connect us, feed us, to a standard undreamt of by kings in any previous century. Objectively it is absolutely undeniable that here and now, this is totally without question the greatest time ever to be alive.  By whatever measures you care to use, people today live longer, healthier, wealthier, happier lives than they ever have before in the history of the world.  Two minor examples:  The biggest health problem in America today is the over abundance of inexpensive, delicious food of every possible variety. A cure for cancer? My wife was cured of a very nasty cancer that would have killed her a decade ago.  

Yes, I said houses, plural. Most people wish they could own one house (The "American dream.") We have two really great houses, both of which in different ways we were blessed to be able to share with many others. And now we are selling those and building one great big one by the shore of Lake Michigan to share with our daughter and family.

My parents gave me more than I could ever deserve, in every way, material, spiritual, educational. I have a brother who has always been my best friend.

I have the greatest marriage ever to my soul mate. The best wife I could ever have wished for, who, 46 years and counting, is still standing by me and supporting me to my last step.

I have wonderful in-laws, who are still with us and who have been like second parents to me. Lou Gehrig mentioned that his mother in law took his side, and mine does too.

I have two great children and five amazing grandchildren.  And, get this: my children actually want to help take care of me, even to the extent of amazingly inviting me to move in with them!  How's that for lucky!

We were so blessed to spend some time in the high Sierras. seeing them as few are able to do. I was able to realize a dream and hike most of the length of the John Muir Trail.

I have a faith that sustains me, guides me, gives me hope, gives purpose and meaning to my life, directs my life, and promises something even better to look forward to. And, I have a worldwide family, brotherhood, community of faith that is the most amazingly close and loving group of people in the world. We were blessed to be able to serve that family of faith in many ways. We continue to be blessed with not just one, but two local congregations that love us and care for us, and brothers and sisters all over the world.

I had a great career in my chosen field of engineering. I was fortunate that my parents sent me to USC to Engineering school. Sometime I'll tell you about how I became a "swiss army knife" of three engineers in one.  I was privileged to work for some truly great organizations at the peak of their productivity, doing exciting projects.  I worked for some inspiring leaders - some truly great men, and was privileged to lead some amazing people.  Although at the time it was often stressful, and there were times when I indeed hated it, it was never dull, and I was able to accomplish and achieve some fabulous things.  I worked with amazing people, sometimes on the cutting edge of technologies. And it paid pretty well, too.

I was able to run for years, and loved doing it.  I got to ride bicycles, to commute by bike for some years.  Not quite as much as I wished, but a lot. And I can still trike!

I live in a time and place where disabilities such as mine can be handled with comfort - luxury even. I get the best medical treatment available.  That it so far offers no cure is unfortunate, but still, I get the best there is.

You know those outrageous overly generous public pensions the politicians complain about?  I've got two of those. With medical insurance, too.

I was thinking about more things that have made my life so amazing, like watching men walk on the moon, robots exploring Mars, asteroids, comets, other planets, Voyager leaving the solar system! Telescopes that have found planets around other stars! So much wonder!

And now, my family is raised. My children self supporting and with great families of their own.  My career is done and I can look back on it with a feeling of accomplishment.  Do I wish I could still hike and bike and camp and run?  Of course I do.  But I look forward with excitement and anticipation to the next chapter in my life.

The point is that I have had a wonderful life. I hope it continues, because it is still going great, but were I told it would end today, I would not feel in any way cheated or deprived.  Lou Gehrig said he felt he was the luckiest man on the face of the earth, and I feel even luckier.