Filed under: Brave New World, Failure, Feedback, General Musings, Genetic Testing, Health, Humor, Machado-Joseph, movies, Preparedness, Science, YouTube | Tags: arthritis, ataxia, balance, blogging, cannabis, dystonia, genetics, health, humor, jim downey, Machado-Joseph Disease, marijuana, medicine, MJD, Monty Python, National Organization of Rare Diseases, neurology, neuromuscular disease, NORD, pain, peripheral neuropathy, restless leg syndrome, science, self care, spinocerebellar ataxia type 3, testing, vertigo, Wikipedia
So, I got the genetic test results today: I have a mild version of MJD.
That’s not an official diagnosis. I probably won’t have that until sometime next year, after I have different insurance (Medicare) and can find a local Neurologist to work with. Because I won’t go back in to the Neurology Clinic at the local large-institution university hospital which shall remain nameless, for reasons outlined previously. And because they didn’t bother to send me the results — which they have had for over a month — until I called them up. And they’re supposed to post all such results to the ‘patient portal’ within two days of getting them. Grrr.
But the results are clear. And since there is little or nothing that modern medicine can do for me that I’m not already doing, I’m happy to just wait.
Knowing the results makes a difference. And while it’s not good news, it could certainly be worse. I know what is going on, and what to expect. Thanks to my sister’s experience, and the experience of my other family members, I know most of the best strategies to manage the disease. Because of my age of onset (about 4 years ago, I think, so about 60 years old), and the type I have, I should experience a normal lifespan and slowly progressing symptoms. I can plan and work with this information.
I intend to continue to write about this, but those posts will probably be just occasional updates when I feel like I have something interesting to say.
Thank you for your good thoughts and support — it’s helped me these past months while I have navigated this experience.
Jim Downey
* https://www.youtube.com/watch?v=Jdf5EXo6I68
Filed under: 2nd Amendment, Ballistics, Connections, General Musings, Guns, Humor, movies, Predictions, tech | Tags: ballistics, BBTI, black powder, blogging, firearms, guns, jim downey
[For the AI’s own inscrutable reasons, Facebook considers my ballistics blog “spam”. Unable to get it resolved, I’m going to post partial info about new blog posts over there, here, so people can link it off FB. Please just ignore if shooting stuff isn’t of interest.]
Last week I posted about a little Liegi derringer that I finished and did a laser design on. Well, over the weekend I got together with the BBTI gang and, among other things, had a chance to shoot and chrono the little gun.
Here’s a short slo-mo vid of shooting the Liegi:
[The entire post with pics of shooting this little gun can be found here.]
Jim Downey
Filed under: Brave New World, Connections, Failure, General Musings, Health, Humor, Machado-Joseph, movies, Predictions, Preparedness, Science, Survival | Tags: arthritis, ataxia, balance, blogging, cannabis, dystonia, genetics, health, humor, jim downey, Machado-Joseph Disease, marijuana, medicine, MJD, neurology, neuromuscular disease, pain, peripheral neuropathy, restless leg syndrome, SCA3, science, self care, spinocerebellar ataxia type 3, testing, vertigo, Wikipedia
“Your love of the halflings’ leaf has slowed your mind.”
— Saruman, to Gandalf. The Lord of the Rings movie.
As I mentioned in my last post:
One of the problems that the industry has (at least in terms of medical use) is that the effects of cannabis are so varied, and standards so inconsistent, that pretty much the universal advice to new users is “just try a bunch of different things at small doses to figure out what works for you”.
So, following this standard advice, when I went to the dispensary for the first time I got a variety of different products. Tincture, edibles, flower, and a couple of pre-rolled joints. The tincture and edibles both have proven promising in my testing, taking the edge off my pain and other symptoms and helping me to sleep better. Last evening before dinner for the first time I tried to smoke some of the stuff taken from a pre-roll, so I could measure it out and be a little more careful about dosage than just lighting up a joint.
I measured out a modest amount, and put it in a glass pipe I’d also picked up. Standard little spoon-style, with a ‘carb‘ (hole on the side that controls airflow). I lit the bowl, drew the smoke into the chamber, and released the carb — and took a deep hit.
The smoke filled my lungs. And immediately I about coughed my lungs out. Hacking, spitting, coughing, tears, the whole 9 yards. Pathetic. But hey, I haven’t actually tried to smoke anything in what … four decades? But clearly, I ain’t no wizard. And I was overly generous in how much to put in the bowl.
Anyway, I went back inside after I recovered sufficiently, and sat down before the effects slammed into me. Good thing, because I was just about useless for the next twenty or thirty minutes. It wasn’t just the high, which I expected. It was also the way it seemed to suddenly multiply all the MJD symptoms I usually experience: vertigo, shaking hands, deep tremors in legs, shooting pain in the arms and feet, difficulty in eye-hand coordination, everything. All at once. About ten times worse than the usual symptoms.
I texted Martha and told her that she needed to take over dinner, that I just needed to sit and ride out the effects for an hour or so. I wasn’t worried; taking psychedelics long ago taught me how to just let the trip unfold without fighting it. The effects backed off and in an hour or so I was functional enough to get up and get some dinner, go into the living room and watch some TV while we ate. The effects then dropped off fairly completely after about four hours.
The worst thing, though? It didn’t do a damn thing for my pain. Oh well.
One strain down, others to try. But only after I get a small vape to allow me to control dosage even better, and take some of the edge off the raw smoke. Live and learn.
Jim Downey
Filed under: movies, Scotland, Travel | Tags: Aberdeen, blogging, Burghead, Clava Cairns, Communion of Dreams, Culloden, Ferness, Findhorn, jim downey, Local Hero, My Dinner with Andre, neolithic, Pennan, Picts, The Ship Inn, travel, Wikipedia
Being a photo-heavy travelog of our 2018 trip to Scotland.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday, May 11.
We left Tain, headed south and through Inverness. On the east side of the city we stopped at the Battlefield of Culloden, the site where the Jacobite Rising ended. But since neither Martha nor I are particularly knowledgeable of or interested in this episode of history, we decided to just look around a bit and then move on.
But not far from the Battlefield, there was something we did particularly want to see: the Clava Cairns. This is a group of burial cairns and standing stone circles dating about 4,000 years ago, during the bronze age. It is a wonderful, magical, site:
Martha in one of the passage graves.
Part of one of the stone circles.
Stone circle around one of the cairns.
The other two major cairns beyond the closest one.
The ring cairn.
The Culloden Viaduct in the distance.
From the Culloden area we decided to drive east, taking the A96 more or less parallel to the coast. Our eventual goal was Aberdeen, but the idea was to enjoy getting there.
It was, as you can see form the image above, a grey and cloudy day. It was also windy. Crazy windy. So much so that where farmers had plowed their fields, the wind kicked up clouds of dust so heavy that it was impossible to see through. Some of these clouds obscured the roads at time, making driving even more fun that usual.
We decided to leave the A96 and take local roads out to the coast through the town of Kinloss and out to Findhorn.
Findhorn. Ring any bells?
Perhaps you remember it from the classic arthouse movie My Dinner with Andre (one of my favorites), where Andre discusses the remarkable spiritual community founded there in the 1960s, renown for the exceptional harvest of oversize vegetables, which was attributed to help from spiritual entities known as devas (catch the reference in Communion of Dreams?). I remember reading about Findhorn back in the 70s as a New Age settlement, and friends and family had visited there to experience the alternative cultural movement themselves. Having a chance to drop in for just a taste of the place was something I couldn’t pass up. So we did, and spent some time walking through the community, checking out the Original Garden, which still has a special place in my imagination. And unlike many things you see after so many years of anticipation, this one wasn’t diminished by reality. See for yourself:
One of several entrances.
That’s the founder’s caravan — what the Brits call a mobile home — which was the first shelter at Findhorn, adjacent to the garden.
Leaving Findhorn, we kept close to the coast, to the small village of Burghead. Why? For the Pictish Fort which is there on the point of the peninsula, which is still quite evident:
The Visitor’s Center, which also has an observation room for watching the sea life.
We headed further east. Got back on the A96 briefly, but then were again on local roads heading for the coast. To the small town of Banff. Why Banff? Because of another arthouse film from the early 80s which I love: Local Hero. The small town bar in that movie is actually a *really* small local pub called ‘The Ship Inn‘ in Banff. Where we stopped in for a bite of lunch and a pint. And were greeted by two local dogs, three patrons sitting on stools sipping their beer, and the landlady. There wasn’t room for much more.
Then it was further up the coast for another film location from Local Hero: the tiny seaside village of Pennan, which played the part of Ferness in the movie. Here ’tis, red phone box and everything:
So you can see just how little of a town as there is. That’s it. All of it.
From there we made our way to Aberdeen, where we had hotel reservations. In the oddest Hilton (Doubletree) I’ve ever stayed in. We were in what was ostensibly a “handicapped accessible” room, and which did indeed have the appropriate safety bars and call buttons fitted out in the bathroom for someone in a wheelchair. But which literally required us to go up two flights of stairs and down one to get to — there was no other way to get to the room. Seriously — there’s no way someone in a wheelchair could have gotten to the room without being carried there. Crazy.
But we had dinner in the hotel, and crashed early.
Jim Downey
Filed under: movies, Scotland, Travel, YouTube | Tags: blogging, Castle of Mey, Clan Mackenzie, Clan MacLeod, Eilean Donan Castle, Glenmorangie, Highlander, jim downey, John o'Groats, Loch Ness, Mansfield Castle Hotel, movies, Old Pulteney Distillery, Orkney Islands, otters, travel, Urquhart Castle, Wikipedia, www youtube
Being a photo-heavy travelog of our 2018 trip to Scotland.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Wednesday, May 9.
This was going to be another driving day, going back across Scotland, but further north. We had a nice breakfast at the B&B, and got on the road. The rain started just as we got on the road.
But it kindly paused, so that we could make a stop once we were back on the mainland: Eilean Donan Castle. This 13th century castle is extremely photogenic, being on a small island at the juncture of three major lochs. See for yourself:
It’s the traditional home to Clan Mackenzie, but you may recognize it as the home of Clan MacLeod from a certain well-known film:
Yeah, that’s the same causeway. Which was actually added just last century. But looks cool.
Still, it’s a very cool place. Unfortunately, no photography was allowed inside the castle. But there’s plenty more to see at their website.
Just as we got back to the car to leave, the rain started back up. I gotta say, the Scottish weather was most considerate for us this trip.
We headed east on the A87 to the A82, stopping at Urquhart Castle on the banks of Loch Ness. Yes, that Loch Ness. Urquhart Castle is a ruin, dating back to the 13th – 16th centuries, but it is a *very* picturesque ruin:
We had a light lunch in the cafe, and got back on the road towards Inverness. Well, towards Tain, actually, on the coast north of Inverness, where we had accommodations for the night. But first we stopped here, to make arrangements to take a tour the next morning:
It may not look like much, but it’s the home of one of my favorite whisky lines: the Glenmorangie Distillery.
And this is where we had accommodations for the next two nights:
The Mansfield Castle Hotel. It was perfect — stylish, a bit old & stuffy, with just enough of a hint of having seen better days to give it a certain seedy charm. Hey, that same description applies to me, so I don’t mean anything negative by it.
We collected some items for a light dinner and enjoyed them in our room.
Thursday, May 10.
A really excellent breakfast at the hotel the next morning, with both Martha and I enjoying traditional kippers and eggs, in addition to all the other goodies. Then we popped back over to the Glenmorangie Distillery for our tour, and concluded with a bit of shopping there. As it turned out, at each of the distilleries we stopped at on this trip, the very same whiskys were available for purchase back in the States (well, except for some absurdly high priced — I’m talking $3k and up — selections), so I didn’t get too carried away, and only brought home a few bottles as keepsakes.
It was still quite early, and we had decided to take a trip to the far north, all the way up to John o’Groats and the nearby Castle of Mey, just across from the Orkney Islands. I would have liked to spend some time in the Orkneys, but the logistics for this trip were just too difficult to arrange. Perhaps another time.
But the drive up was wonderful! We stopped in the small town of Wick to check out the Old Pulteney Distillery and Old Wick Castle (which was closed for work). We did get some great pics of the seashore there. Here’s one:
And then on to John o’Groats and Mey. Even though we arrived there mid-afternoon, it felt early because the sun was still so high in the sky. That’s because that part of Scotland is so far north that there was more than 18 hours of daylight in early May. We had a nice lunch in the Castle cafe, then enjoyed a guided tour through the Castle itself. Spending time in the Castle of Mey and the attached gardens was a delight.
Orkney Islands in the distance.
Castle of Mey
Walled gardens. Wall is about 4m tall.
As you can see, the gardens are extensive.
Looking north to the Orkneys.
We started back to Tain, taking our time to enjoy the land- and seascapes. We hit some pockets of rain, which didn’t last, but gave us some great scenes:
Somewhere, over the North Sea …
The gorse was gorgeous.
For my otter-loving friends, look close at the sign.
Again, we decided to take dinner in our room, just relax and unwind a bit after all the driving.
Jim Downey
Filed under: movies, Scotland, Travel, Wales | Tags: Ben Nevis, blogging, Caernarfon, Conwy, Doune Castle, Fort William, Game of Thrones, Holy Grail, jim downey, Monty Python, movies, Outlander, Scotland, Stirling Castle, travel, Trossachs National Park, Wales, whisky, Wikipedia
Being a photo-heavy travelog of our 2018 trip to Scotland.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sunday, May 6th.
We had a lovely breakfast at the B&B, and for the first time I had real, actual, haggis … and discovered that I quite liked it. It was our host’s own home-made, and the slice I had with breakfast was buttery, crunchy, full of flavor. Yum. The haggis I had a couple of additional times during the trip was similar, and likewise quite tasty.
Following that, we packed up, then went up to Stirling Castle, just up the hill. Stirling is a very substantial royal castle, on the order of such Edward I castles in Wales as Caernarfon or Conwy. But as with a number of additional castles in Scotland, Stirling had been renovated and updated repeatedly after the medieval period, serving different functions both personal and military up until almost the current time.
The Great Battery.
Nothing quite like commanding the heights.
The Great Hall.
Hmm … feels oddly familiar …
Royal Chambers.
King’s and Queen’s Knots, seen from the walls of the castle.
It was good that we were able to get there first thing, because by the time we had enjoyed our tour of the castle, the crowds were starting to get thick. We headed off on our way.
To Doune Castle. Doesn’t sound familiar? Maybe this will help:
I love that they sell coconut halves there.
Yeah, Doune was used for multiple different ‘castles’ in Monty Python and the Holy Grail. As Wikipedia outlines:
- At the start of the film, King Arthur (Graham Chapman) and Patsy (Terry Gilliam) approach the east wall of Doune Castle and argue with soldiers of the garrison.
- The song and dance routine “Knights of the Round Table” at “Camelot” was filmed in the Great Hall.
- The servery and kitchen appear as “Castle Anthrax”, where Sir Galahad the Chaste (Michael Palin) is chased by seductive girls.
- The wedding disrupted by Sir Lancelot (John Cleese) was filmed in the courtyard and Great Hall.
- The Duchess’ hall was used for filming the Swamp Castle scene where the prince is being held in a tower by very dumb guards.
- The Trojan Rabbit scene was filmed in the entryway and into the courtyard.
As well as also having served in other films and television shows, including Game of Thrones and Outlander.
Recognize any of these shots from the castle?
Sir Galahad almost slept here.
“You must spank her well, and after you are done with her, you may deal with her as you like… and then… spank me.”
We’re knights of the Round Table, we dance whene’er we’re able. We do routines and chorus scenes with footwork impec-cable.
In his own particular idiom.
And some other pics:
From Doune we headed northwest through Loch Lomond & The Trossachs National Park to Fort William at the foot of Ben Nevis. Driving through the beautiful Trossachs was wonderful, and reminded me very much of the area around Snowdon in Wales or parts of the American West in the Northern Rockies.
We had a very substantial lunch at a nice pub along the way, so weren’t very hungry that evening. We popped into a grocery store and got some snacks and cold cuts to make a light dinner. I was amused by the selection of decent scotches (at absurdly low prices) there in the little store:
Mmmmmmmmm …
Jim Downey
Filed under: ACLU, Amazon, Brave New World, Civil Rights, Connections, Fireworks, George Orwell, Government, Humor, movies, NPR, Paleo-Future, Politics, Predictions, Preparedness, Science Fiction, Society, Violence | Tags: 1984, ACLU, George Orwell, Guy Fawkes, humor, investments, jim downey, literature, money, movies, NPR, police, politics, predictions, protest, Science Fiction, Wikipedia, women's march
Hmm. Perhaps it’s time to invest in companies which make those Guy Fawkes masks …
Even better, we can set up an investment fund which holds stock in companies which make yarn, knitting needles, Maalox, poster board, magic markers, etc. Just to hedge our bets, it should also look at firms which deal in security consultation, drones, police & military equipment, private prisons, and so forth. Pity there’s no way to own stock in the ACLU.
Oh, and I wish I held the copyright on 1984 …
Who’s in?
Jim Downey
Filed under: Art, Augmented Reality, Brave New World, movies, tech | Tags: art, augmented reality, bookbinding, Davy McGuire, jim downey, Kristin McGuire, movies, photography, technology, Theatre Book - Macbeth, theicebook.com, video, Vimeo, Wikipedia, writing
This is completely delightful:
Lots of news from the world of my life. Most of it good. I’ll share in a few days.
Jim Downey
Filed under: Art, Augmented Reality, Carl Sagan, Connections, movies, NYT, Religion, Science, Science Fiction, Society, Space, Writing stuff | Tags: art, blogging, Carl Sagan, con artist, Galaxy Quest, jim downey, literature, Maria Konnikova, movies, New York Times, religion, science, Science Fiction, space, writing
You should read this: Born to Be Conned. Seriously, it’s a very good examination of the human tendency to construct narratives to explain the world around us, and how that trait can easily be manipulated and used against us. Here’s a good passage, explaining why we’re susceptible to grifters of every sort:
Stories are one of the most powerful forces of persuasion available to us, especially stories that fit in with our view of what the world should be like. Facts can be contested. Stories are far trickier. I can dismiss someone’s logic, but dismissing how I feel is harder.
And the stories the grifter tells aren’t real-world narratives — reality-as-is is dispiriting and boring. They are tales that seem true, but are actually a manipulation of reality. The best confidence artist makes us feel not as if we’re being taken for a ride but as if we are genuinely wonderful human beings who are acting the way wonderful human beings act and getting what we deserve. We like to feel that we are exceptional, and exceptional individuals are not chumps.
The piece also reminds me a lot of Carl Sagan’s The Demon-Haunted World, because of this insight:
Before humans learned how to make tools, how to farm or how to write, they were telling stories with a deeper purpose. The man who caught the beast wasn’t just strong. The spirit of the hunt was smiling. The rivers were plentiful because the river king was benevolent. In society after society, religious belief, in one form or another, has arisen spontaneously. Anything that cannot immediately be explained must be explained all the same, and the explanation often lies in something bigger than oneself.
I don’t mean to pick on religion here, just to point out that this is a very human trait. In fact, I have often wondered whether it is a defining human characteristic, something which could easily set us apart from other intelligent species. It’s fairly easy to imagine how intelligent, sophisticated, technologically-advanced civilizations could be constructed by species which don’t have this human gift for storytelling. You can, after all, have curiosity and scientific inquiry, art and poetry, even narrative and historiography, without having something like literary fiction.* I think that it might be interesting to write a science fiction story/series based on the premise that humans become the storytellers of the galaxy, because of our unique ability to create explanation narratives unrelated to reality.
How very meta.
Jim Downey
*Of course.
Communion Of Dreams 
