Sunday, December 2, 2018

Now Bring Us Some Figgy Pudding

Lyn's MacDougall family Plum Pudding, Christmas 2010

The traditional (and seasonally 
ubiquitous) English caroling song, "We Wish You a Merry Christmas," contains the famous, but mysterious to most Americans, lyrics about "Now bring us some figgy pudding , , , bring it right here . . we won't go until we get some (etc)" Here's a link to a video of the carol, if you need reminding of the words:  Video: We wish you a merry Christmas

Now bring us some figgy pudding? But just what is this figgy pudding, of which we won't go until we get some? It turns out to be just another name for Plum Pudding, or Christmas Pudding, though that won't mean much to most Americans. Also, it may well have neither figs nor plums, which can refer to raisins or currants. 

If, unlike the MacDougalls, you've lost contact with English traditional cuisine, you may not realize that an English pudding is generally a steamed solid doughy dessert, ending up like a hot, moist, crumbly fruit cake served with hard sauce or custard sauce. A key ingredient is suet. 

If you watch that video in the link, of the "We wish you a merry Christmas" song, the song could give us the impression that Caroling was near to the American Halloween "Trick or Treat" tradition:  A way of extorting sweets from residents.

The excerpt below, from the book "Lobscouse & Spotted Dog" (a gastronomic companion to the Aubrey/Maturin novels of Patrick O'Brian) describes the British navy version of such pudding,, including figs, but the figs are not that typical. And the "Spotted Dog" in the book title is actually just another version of steamed suet pudding, the "Dog" being another word for Dough, along with Dick, Duff, and Dowdy. The pudding is such an important feature of English cuisine that they have many words for it. 


(Most land lubbers use bread crumbs rather than pounded ships biscuit)

You might also find NPR's article helpful, in this link:  NPR - Figgy Pudding
The NPR articles uses a photo of a molded pudding,


rather than the more traditional tied cloth shape, shown in the top photo, of one of Lyn's.  My mother used to use an aluminum steaming mold, but later went to the tied cloth instead.  A mold gives it a better presentation, but it tastes the same.

In Charles Dicken's classic "A Christmas Carol," Ebenezer Scrooge, after proclaiming "Bah!  Humbug!" to his nephew, imprecates:
"If I could work my will, every idiot who goes about with 'Merry Christmas' on his lips should be boiled with his own pudding, and buried with a stake of holly through his heart.  He should!"
And then, in Dicken's familiar story, at the poor Cratchit house, after the extravagant feast of Christmas goose, comes the pudding:

"Hallo! A great deal of steam! The pudding was out of the copper. A smell like a washing-day! That was the cloth. A smell like an eating-house and a pastrycook’s next door to each other, with a laundress’s next door to that! That was the pudding! In half a minute Mrs. Cratchit entered—flushed, but smiling proudly—with the pudding, like a speckled cannon-ball, so hard and firm, blazing in half of half-a-quartern of ignited brandy, and bedight with Christmas holly stuck into the top.Oh, a wonderful pudding! Bob Cratchit said, and calmly too, that he regarded it as the greatest success achieved by Mrs. Cratchit since their marriage. Mrs. Cratchit said that now the weight was off her mind, she would confess she had had her doubts about the quantity of flour. Everybody had something to say about it, but nobody said or thought it was at all a small pudding for a large family. It would have been flat heresy to do so. Any Cratchit would have blushed to hint at such a thing."

If you follow Dancing With The Stars, you may have seen judge Len Goodman coyly refer to a "spotted dick", which you now know to be another name for spotted dog, a type of steamed pudding.

You may dimly recall the Mother Goose Nursery Rhyme riddle about Plum Pudding, though you probably never realized that's what it was about, but it is clear that it contains the rudiments of the recipe for a plum pudding:

FDR served Plum Pudding with hard sauce to Winston Churchill at the White House, for Christmas dinner in 1941.



My brother, Donald, took up the pudding boiling mantle (or other cloth) laid down by our late mother Edith, who in turn got it from our Dad's mother, Hannah MacDougall (nee Hirst), from Huddersfield, England, though I was never sure if it was from her English origin, or my Grandfather's Scottish beginnings. Perhaps both.  Don filled in as the family pudding maker for a number of  years.  Alas, Don, and his puddings remain in California, but I trust Lyn to fill the breach, as she has. The top photo, from Christmas 2010, was Lyn's pudding.

Here is Lyn's recipe card, written for her by my mother, for the MacDougall family Plum Pudding, handed down through at least two generations of MacDougall daughters in law. My thanks to Lyn for allowing me to share this here.  It is really her's to share, not mine.



Notice that it has neither plums nor figs.  As explained in the Lobscouse and Spotted Dog excerpt, those are really regional terms for raisins and currants. No "plums" in plum pudding.  Raisins and currants, are what are usually used, along with other candied fruit.  The hard bread crumbs need no marlin spike.

Some of the ingredients are getting hard to find.   Candied fruit is becoming a specialty item.  Suet, the fat around the kidneys, isn't in big demand  Most butchers don't save it.  You have to ask for it.
Suet is underappreciated as a cooking fat, not much different than butter, but with a higher melting point vital for steaming. Suffers from faddish aversion to fat, which is an essential nutrient. Certainly far, far better than the "Crisco" commonly used in pastries   .https://en.m.wikipedia.org/wiki/Suet

I suppose Donald has my mother's original recipe, probably conveyed orally from Grandma MacDougall, as well as the steaming mold my mother used to use.

"Hard Sauce" may be equally mysterious to many of you. A seeming contradiction in words.  How can a "sauce" be hard?  Hard Sauce is just the totally decadent mixture of sugar and butter.  Take a stick of butter, a bowl and wooden spoon, and add sugar.  You keep adding sugar until it is about as hard as you can get it and still be able to mix it..  Some people use powdered sugar, as we used to when I was a boy.  Now we used granulated sugar, which may be more traditional, and which I prefer.  A "little" vanilla, or rum, if you so choose.  Then, you put the bowl in the refrigerator to harden some more before serving.  When served, you chip out chunks of the hard sauce and mix it in with the plum pudding, where it melts into the whole gooey pudding.

The full photo also shows the bowl of Hard Sauce
So, English pudding is not the gelatin that Americans call pudding, but a far firmer substance, and   the "hard sauce" that goes with it is also harder than you usually think of a "sauce."  Hard pudding:  Hard sauce.

Ruth's family (Canadian - English) used "Bird's Custard" instead of hard sauce.  Bird's Custard is an old commercial eggless custard, developed in 1837, and has become traditional as a pudding topping in many British families.  It comes as a powder that you mix with milk over the stove to make a custard.

You could also use a rum sauce, or even, pour some rum over the pudding.  Or, flame it with brandy, as Mrs. Cratchit did.

Don added this lexicographic note:
"Looking in the mother of all dictionaries, that is to say the Oxford English Dictionary, regarding the word "pudding" I found that there are perhaps two large pages or more of very fine print on the subject. Attempting to summarize a bit, it seems like long ago the word applied to most anything that was boiled in a cloth or a bag or an animals intestine, which would have been fairly common ways for common folk to cook things in the British isles. The word later came to be applied to similar sorts of foods baked in an oven. Fairly recently it has, in England and Scotland at least, come to be a synonym for what we in the USA would call dessert, that is to say, something sweet eaten at the end of a meal. All this accounts for Plum/Christmas/Figgie puddings etc, but fails to explain Yorkshire pudding, which is a rather bland flour and egg batter, poured into a pan of hot fat and baked in an oven which is served with gravy as a sort of appetizer course before the roast beef, potatoes and vegetables come from the kitchen."
"Lobscouse and Spotted Dog" quotes Burns as calling Haggis the "great chieftain of the pudding race." It also opines that "pudding started out on a parallel course with sausage, then veered off in a more farinaceous direction with the addition of grains or porridge, and finally shed its guts altogether in favor of basins and cloths."

I wonder if Yorkshire Pudding may be a snide Norman joke at the expense of the Yorkies: i.e., "what passes for pudding among those Yorkshire yokels."

And speaking of Yorkshire Pudding, that too is a MacDougall family tradition, though Yorkshire Pudding is not a dessert, but is served as a main course accompaniment to roast beef, or just before the beef, as a sort of appetizer (some have suggested, as a way of filling up young stomachs more cheaply than with beef)  but it reminds me of the other Mother Goose nursery rhyme that contains the recipe for Yorkshire Pudding:

Girls and boys, come out to play,
The moon doth shine as bright as day;
Leave your supper, and leave your sleep,
And come with your playfellows into the street.
Come with a whoop, come with a call,
Come with a good will or not at all.
Up the ladder and down the wall,
A halfpenny roll will serve us all.
You find milk, and I'll find flour,
And we'll have a pudding in half an hour.

According to this linked article in Wikipedia , there's even the tune to go with it.

An old English dictum says: "The proof of the pudding is in the eating"  (sometimes stated more briefly as, "The proof is in the pudding"). This has reference perhaps to some form of pudding like plum or "figgy" or perhaps to the precursor sausage from which pudding evolved.  The word "proof is in the sense of "Test.  The test of a pudding is to eat it and see. Indeed.  You just have to try it.

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

I originally posted much of this material as a series of annual Christmas season posts on Facebook.  Additional points were added in comments, by me and others.  This blog is a "pudding" of all of that material, tied up, and boiled together.

Monday, November 12, 2018

Armistice Day


One century ago, November 11th, 1918, 11 a.m., the guns of "The Great War" fell silent in Europe, ending those four years of war in which some 14 million died.

The 11th hour of the 11th day of the 11th month has been celebrated since as Armistice Day, a cross-national celebration of peace.

The US recognized and observed Armistice Day until 1954, when it was changed to Veterans Day.  British Commonwealth nations now call the day Remembrance Day.

I was 5 years old in 1954, and not really into world or national news or events, but I do remember when it was called Armistice Day, and that name lingered in general use for several years after that as well.

It was probably appropriate after WWII to broaden the occasion from just WWI, and perhaps to recognize that the Armistice originally celebrated did not last:  A resigned, Cold War recognition that "The War to end all wars," had failed to accomplish that.

The change from Armistice Day to Veterans Day was a subtle change, perhaps, but it changed the emphasis from a celebration of peace, to a remembrance of war.  It also tended to isolate the US from the essentially international nature of peace: That peace depends on many nations, not just one.

Since Pearl Harbor, the US has been essentially in a perpetual state of war.
  • Cold War, NATO, European and Asian bases
  • Berlin airlift 1948-49
  • Korean War 1950-53
  • Cuba Bay of Pigs invasion, 1961
  • Vietnam War 1961-73
  • Dominican Republic, Haiti, Grenada, Panama
  • Lebanon 1982
  • Gulf War 1991
  • Somalia 1993 ("Blackhawk Down")
  • Balkans: Bosnia 1994-5 & Kosovo 1999
  • Afghanistan 2001 - ?
  • Iraq 2003 -?
  • Syria missiles

Of course, the world has seen many other wars in that period, in which the US did not directly participate.  Some of them, the US was involved indirectly, with arms or support of various kinds.  Others, perhaps with no US involvement.

War seems to be a natural state of human affairs, with peace being the rare exception.

Peace seems indeed something to celebrate.

An act of Congress approved May 13, 1938, made November 11 in each year a legal holiday: "a day to be dedicated to the cause of world peace and to be thereafter celebrated and known as 'Armistice Day'."
Knowing the conditions in 1938, that was so optimistic, it seems almost sarcastic. 
Perhaps the change to Veterans Day in 1954 was an abandonment of peace as a credible goal.

We have many US holidays that remember war:
  • Memorial Day
  • Veterans Day
  • Armed Forces Day
  • Independence Day
I certainly do not in any way begrudge veterans the recognition they so deserve for their service.  I respect their dedication, courage, and sacrifice. I hope nothing I muse about here will be taken as in any way critical of those observances. But I do pray for the day when the sacrifice of young men on the battlefield will no longer be necessary; For the day to come soon when "they will study war no more."

Some claim that peace must be fought for;  That it is best achieved by military might;  That we should thank soldiers for giving us peace.

Others claim that violence cannot be overcome violence;  That love and non-violence are the way to peace.

Some say human nature is simply incapable of peace, and peace can only come with divine intervention.

I have not just one, but many opinions and beliefs on peace.  No doubt, you do too.

I could not help being moved by French President Macron's speech yesterday
A cozy and peaceful group?

in which he said:
 "Patriotism is the exact opposite of nationalism, Nationalism is a betrayal of patriotism. In saying ‘Our interests first, whatever happens to the others,’ you erase the most precious thing a nation can have, that which makes it live, that which causes it to be great and that which is most important: Its moral values. I know there are old demons which are coming back to the surface, They are ready to wreak chaos and death. History sometimes threatens to take its sinister course once again."
You may disagree.  You may think that strong nations further the course of peace, and that "good fences make good neighbors." You may view with suspicion or even hostility such globalist one-world views.  I can sympathize.  There are many dangers in this world.

Whatever your view, most people seem to think peace would be nice.

Perhaps, one day a year, to think about peace, would be a good idea?

Just one day each year - to think about, plan for, wish for, hope for, fantasize about, even pray for, Peace.  Is that too much to ask?

The Beatles sang: "Give peace a chance."  Idealistic, unrealistic, simplistic, sure.  Just a song.  Liberal, humanist, BS.  Don't expect great truths from Rock N Roll.  Get real.

But still, just one single day, to just think about Peace.

Lots of holidays now involve fantasizing. We just had Halloween, all fantasy. There's the Easter Bunny. Leprechauns on Saint Patrick's Day.

Valentines Day is devoted to fantasizing about idealized, unrealistic,  romanticized love (and sex).  Can't they do the same for peace?  Hallmark could make a killing, er, fortune.

Next up, Santa Claus.

Speaking of Santa Claus:

We are about to enter the Christmas season, celebrating the birth of Jesus of Nazareth, who Christians call "The Prince of Peace," and whose birth was heralded by angels proclaiming "Peace on Earth. Good will to men," a goal, 2000 years on, still awaiting fulfillment.   Perhaps Christmas could be that day to think about peace? 

But, don't just think about peace.   Just Do It!

Jesus didn't just promise peace in a future Paradise.  He offers peace today. He calls us to peace now.  Just accept his peace, and practice it, now.

Waiting for divine intervention is a cop-out.  Don't wait for God to do it for you. God has already intervened.  Don't wait for someone else to be first.  Jesus was already first.  Now, it's our turn.

He said to treat others as we want to be treated, not as we are treated. Do you want killing to stop? Then stop killing.  Just stop.

You say you are "Pro-Life?"  Great!  Then stop killing people. Set the example of not killing the unborn by not killing the already born.

Jesus is not called the Prince of Peace just because of a promised future, but because of what he already did.  He reconciled us to God, and he calls us to reconcile with each other, even if that requires self-sacrifice.

Soldiers who die in battle are said to give "the ultimate sacrifice."  But Jesus died in peace, an even greater sacrifice.  He set the example that he asks us to follow.  Put down the battlefield crosses, and take up the cross of Jesus.

Cease fire. Declare your own Armistice.

As the song says: "Let there be peace on Earth,

                            and let it begin with me."

Peace




Tuesday, November 6, 2018

Clinical Trial Progress


Rush Medical Center Professional Building

For those of you who may be in suspense, worrying about how my immunotherapy treatment clinical trial is going (Yeah, unlikely, I know, but just in case)  Here's the news:

(or, if you missed my previous blog about PSP and this experimental treatment, you can catch up there: Previous "Progress" blog)

October 2nd, I had my first ABBVie Arise clinical trial immunotherapy infusion.

Last Wednesday, Halloween, I had my third infusion.  I thought about a zombie costume for the occasion, but thought maybe they'd take it seriously. This was the end of having to go in bi-weekly.  From now on, the rest of the infusions will be at monthly intervals.

So far, pretty uneventful.  No noticeable adverse effects, other than lots and lots of needle sticks.

Nothing like the drama of the spinal tap they did to screen me into the trial before I started getting treatments

I get the treatments in the building above, on the Rush Medical Center campus, on Harrison Blvd, about 2-1/4 miles west of the downtown Chicago "Loop."

Each infusion lasts 3 hours, followed by a 20 minute "flush" infusion, so I sit there for about 3-1/2 hours with an IV needle in my arm.

Unlike chemotherapy for cancer, it doesn't hurt (other than the needle stick). No burning, really no feeling at all.

The tests they do with each infusion vary a bit:
  • Last week, they only took one blood sample.  
  • The previous time,  they took blood samples THREE TIMES, once before the infusion, one after, and another an hour later. I came out with three bandaids:, two on one arm; and one on the other covering two needle sticks, total 4 sticks including the infusion (shoulda got a photo of my arms).
  • This time they did an EKG (no extra charge for the chest hair spot removal)
  • The first infusion required a urine sample.
  • In December, I get a repeat Brain MRI, to see if my brain is shrinking.
  • Every time, they do a neurological exam (eyes, reflexes etc)  and cognitive, psych and memory tests (you know, remembering three words). (* See note below) 
I get the infusions in a 10' X  10' windowless exam room, where we spend most of the day.  People come in and out to do the various tests and exams, and check on us.  The staff are all very nice, friendly and helpful.  And, I see my doctor each time, which is helpful, as I can ask about other issues at the same time.

We have to leave our house about 6:30 in the morning to get to Rush through Chicago rush hour traffic by 8:00, so Lyn packs something for me to eat for breakfast after I get there, to save time getting ready to leave in the morning.  We usually have lunch while I'm getting the infusion.

So far, I haven't noticed any changes, but really I'm not supposed to.  If the treatment is working it will slow the progress of the disease, which, in the month since the first treatment, would not be perceptible anyway.  So, it's impossible for me to tell if it's having any effect.  Over the next year, in comparison to other patients, they'll see. Oddly, I guess, the best, most hoped for, outcome of the treatment would be if there was no change at all.

It was also nice to hear Sunday that my friend Mary from our little church in Kouts, IN, who also by coincidence has PSP, got into the same clinical trial, in Houston, nearer where she recently moved. What are the odds of actually knowing someone else who has the same, very rare, disorder?

Rush also just happens to be 3 miles west of a Trader Joe's, on Roosevelt, where we usually go afterwards on the way home, to get our fix of old familiar Southern California food.
Trader Joe's has not yet made it across the border to Northwest Indiana, so it's otherwise a very long drive.  Ice cream does not last well on the drive home in the summer.  But 3-buck Chuck (it's a tad more expensive than in California) transports legally across the state line.  It's pretty convenient to stop by on the way home, and makes for a scenic drive along Lakeshore Drive afterwards, going home.
Rush to Trader Joe's for Pasadena Salad

You may just be able to see that the CTA Pink Line goes right next to the building at Rush, from the Loop.  In theory, we could take the South Shore Line commuter train from Dune Acres to Millenium Park (you can see Millenium Park, and the RR tracks, at the right in the photo above) in Chicago, wheelchair two blocks to the Wabash CTA station, and take the pink line to Rush, where the station is a block south of my building.  We could, if we wanted to leave the house at 5:30 to catch the 5:53 train, to get to Rush by 8:00.

So far, Lyn has been willing to drive, and that way, she has the car to take to Trader Joe's.  We dropped Matt and Jenni off at Rush two weeks ago at the end of their visit, before their Eagle's concert in Chicago, and they got to experience the commute with us.

So, that's our "Trial" so far.  Not too grueling.  A bit of an adventure, and hopefully, most of all, progress in the science of treating degenerative brain disorders.

* Note about those cognitive, psych, and memory tests:  So far, I'm probably no more demented than most of you.  Maybe less, in some of your cases.  I just get tested more frequently.

Here are the links to learn more:

About Progressive Supranuclear Palsy:  About PSP

Clinical Trials website:  ABBVie Arise Clinical Trial

ABBVie's website:  ABBVie

If you would like to donate to brain disorder research: Cure PSP


Saturday, November 3, 2018

A Nation Shares A Meal

Thanksgiving at the MacDougall's  house - 1989

I like Thanksgiving.

Not to criticize any other holidays, but it seems like the perfect combination of the holy and the secular.

It's not at all a Biblically ordained day, not sponsored by any particular church, not limited to any religion, yet is perhaps one of the more truly Godly of holidays.

It's not overtly patriotic, nor entirely unique to America, yet is perhaps the most truly American of celebrations.

Sure, like any other occasion it gets commercialized to some extent.  Sure, it sometimes gets inverted into a celebration of over-consumption.  But those are quibbles, nit-picks really.

Unlike many other holidays, it doesn't turn out to be just an excuse for a three day weekend - it actually gets observed, celebrated, participated in. Most of us actually do give thanks that day.

We may not decorate graves on Memorial Day or go Trick-or-Treating on Halloween, or light fireworks on the 4th of July, or go into labor on Labor Day (or whatever one is supposed to do on Labor Day), or hunt eggs on Easter.  But on Thanksgiving, most of us do have a family gathering and make an occasion of it.

What seems most amazing, aside from the fact that most of us do actually pay attention to it, is that the entire nation engages in a form of fellowship around a shared meal.  That is, the whole country, all of America, sits down to share a meal.  We don't all quite fit at the same table, or in the same room, but most of us sit down the same afternoon to about the same food, gathering in similar ways in the common tradition.

From Grandmother's House ("over the river, and through the woods"), to urban apartments, to skid row soup kitchens, to military mess tents overseas, to the fanciest estates of the wealthy, to suburbia, Americans, wherever they are, share this meal.

The recipes may differ a little; different kinds of stuffing, perhaps; but the menu is mostly pretty similar.

Oh, sure, there may be various ethnic family dishes served as well, Nana's tamales, or sauerkraut, or kimchee, or gefiltefish, or dim sum, and those family touches are a shared tradition too.

The pies may differ a bit: The ubiquitous (so!) pumpkin and apple of course.  Maybe Southern pecan, Northern Blueberry, Anaheim Boysenberry, English Mincemeat, my mother's lemon meringue, Indiana Hoosier pie, your auntie's specialty.

But for most of us, the basic menu is pretty standard.  You can get it anywhere:  Turkey, stuffing, yams (with or without marshmallows), mashed potatoes, gravy, cranberry sauce, roll, a vegetable if you must, and pie, pie, pie.

For those who may remember Van de Kamps in Southern California

No matter what we may believe or not believe, regardless of religion or politics, whoever or whatever we thank, we join together as one people in a shared traditional dinner, counting our blessings, the biggest shared meal in the world, perhaps.  It is a truly grand tradition. We try to find others to gather with, to share the occasion with as many as possible, but regardless how many or few are physically with us, the whole nation shares this meal.

It is an occasion to be thankful for what we share, and to share what we have.  Happy Thanksgiving to you all.

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

2020 Added thoughts:

I usually share this blog annually without comment, but this exceptional year, 2020, requires additional thoughts.  I think this year should make us all the more conscious of just how blessed we truly are, and all the more thankful for those blessings.  Despite all the troubles of this year, this remains absolutely the greatest time ever to be alive, and America, despite obvious problems, remains a great place to live.  I do understand that so many families are suffering from the effects of the pandemic, the resultant economic problems, grief at the loss of loved ones, and so many other causes.  We are ever aware of the suffering that abounds in this mortal world, and look forward to a better one in the future.  But this week we set aside a day to be grateful for all that we have been given.  And ALL of us in this nation have been given so much.

It is too easy to think of what we used to have, and to bemoan the loss of things we used to enjoy.  I can certainly do that any time, as well as anyone.  If you still have control of your limbs, you have way more than me.  I certainly don't want to get into a "who has it worst" battle, or make a "smile, things could be worse" argument.  It's far simpler than that.  I could look at that photo above from 1989 and grieve the people that have since died, and miss the people now far away (or the hair I used to have).  Instead, I smile at the memory.  I'm thankful for my family.  

Sure, many of us will sit down at a smaller table this year, with fewer family physically with us.  Though we do miss the family gathering, we can be all the more thankful for the family we miss.  We can be thankful for technology (like this) that brings us together even though separated by miles, or even around the world.  The whole point of my blog is that we share this Thanksgiving meal with the whole nation, wherever we are and whoever we are with.  That should be all the more evident this year of social distancing.

Things we may be missing this year should make us all the more grateful for all that we still do share.

Friday, October 26, 2018

Watching for Suspicious Packages



Lately, we are being advised to be on watch for suspicious packages.  I've been keeping an eye out, and have a lot that look highly suspect to me.

The UPS and FedEx guys are here almost every day.  That alone seems suspicious.  We're just a house, not a warehouse.  How can they keep delivering that much stuff?  And where does it all go?

The crazy neighbor we used to have back in La Crescenta was a horder, who always got daily deliveries.  Too much QVC and Home Shopping Network, we assumed.  Now, we are those crazy neighbors.

The UPS and FedEX guys always ring the doorbell fast, run back and jump in their trucks, and hightail it out the driveway, often before I can even get to the window.  They seem really eager to get far away from our packages as fast as possible.  They seem to suspect our packages too.  

When I was a boy, that "ring and run" thing was not just "suspicious."  It was a sure sign of mischief.  Only a fool would open a package left on their doorstep that way.

I'm no fool.  I let someone else bring in packages and open them.

Tuesday, I'd just gotten back from a trike ride (with Dennis, who was visiting from California) when the UPS van backed up to the open garage door while I was sitting in the garage changing out of my bike shoes. Probably the same guy in the doorbell-cam photo, above.  The driver didn't get out.  We heard thumping, banging, crashing sounds from inside the back of the van.  I remarked to Dennis that it sounded like the UPS guy was losing the fight.  Finally, after about five minutes of that, Dennis walked around to the side of the van, to see if the driver was OK.   UPS guy said he couldn't find a package.  He was supposed to have something for Sarah, but couldn't find it.  Would have to come back later.  Sounded suspicious to me.  True story.  Ask Dennis.

On Sundays, the US Postal Service "mailman" brings packages.  US Mail?  On Sundays?  I thought they were talking about cutting back to five days per week.  Instead, they went to seven?  Highly suspicious, if you ask me (but no one asks me).

We get cases of wine dropped off on our doorstep, too!  That's suspect for a lot of reasons.  Mail order wine is about as suspect as that wine in a box from the supermarket.  If we had any neighbors, they would certainly wonder about us (or steal if off our doorstep, if we had a doorstep, especially that crazy neighbor back in La Crescenta).  The wine delivery man is supposed to get an adult signature, but last time, he just did the UPS ring and run or drop and dash.  He may be getting suspicious about that wine, too.

Wine deliveries are particularly suspicious here in Indiana, where folks are only slowly and reluctantly letting go of Prohibition. Sunday alcohol sales just became legal this year, still only for limited hours.  A friend from California tried to send Lyn some wine for her birthday, but was told they couldn't ship it to Indiana.  Not entirely sure our deliveries are legal.  Suspicious?  Try sending us some anyway, just to test it.  

Lyn gets boxes of flowers delivered monthly.  And they're not from me.  Should I be suspicious?  She claims they're from our daughter.  Does that sound credible to you?  Any of you getting flowers from your daughters?  No, I didn't think so.  Mighty suspicious.

The other day, I was expecting a package, and the tracker said it should have been delivered.  But Lyn saw the package and said it was just a bra for her.

Today, the wife got chocolates in the mail.  Said she'd ordered them for herself.  I didn't actually see the package they came in.  Like I said, I leave that package retrieval to others less paranoid than I. What do you think?  Sound suspicious?

First flowers; then lingerie; now chocolates?  Suspicious?

Then there's all the packages where my wife says (opening something she seems to have ordered and forgotten)  "I wonder what this is?"  When I order something, I'm waiting for it, tracking it, looking for it, expecting it, and know what it will be.  Is it suspicious when she can't recall ordering it?

The dog also gets food and treats delivered.  I mean, I knew the dog had his own Instagram account, but I'm not too sure about him having his own PetSmart account.  May be a little too "smart."  See what I mean?  Very suspicious.  Makes me wonder what they've given him to keep him occupied in that crate downstairs.  The cats get treats delivered, too, but cats were always suspect.
Cat, plotting next order

Then there's the stuff I order.  Highly suspect, too:

There's the things I order from eBay, that sound innocent, but end up coming from China three weeks later by First Class Mail (free shipping) in strange envelopes.  How can it possibly be profitable to send something from China for $7.95, with free shipping?  I hear even the President is suspicious about that.  

Then there's all the stuff I order with wires, cable, gadgets and gizmos that even I should be suspicious about.  I long ago gave up trying to explain what they are for.  Lyn just eyes them suspiciously and asks, rhetorically, "More cables?"  If I try to explain it, I just sound crazier.  It's HDMI, or USB2, or Ethernet Cat5E.  If the FBI and the NSA don't wonder about me, they're just not paying attention.  I mean. wouldn't you be suspicious of this thing? 

Please don't ask.  It's too hard to explain.  Trust me, you really aren't that interested. I'm an electrical engineer (among other things).  Let's leave it at that. But notice that there is no blue wire, so you need not be worried about cutting it.

Now, we've signed up for this new Medicare supplement insurance through AARP, which meant we actually had to join AARP.  After 20 years of junk mail from AARP, some of it might actually be important.  The stuff it used to be safe to recycle automatically might be our new insurance cards.  I tell you:  No telling what to be suspicious about.

Thursday, October 4, 2018

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)





Tuesday, September 25, 2018

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.