Filed under: Book Conservation, Brave New World, Connections, Depression, General Musings, Genetic Testing, Health, Science, Society, Survival | Tags: ataxia, balance, blogging, cats, genetics, health, jim downey, Machado-Joseph Disease, medicine, MJD, National Organization of Rare Diseases, neurology, neuromuscular disease, NORD, pain, peripheral neuropathy, restless leg syndrome, SCAR8, science, self care, spinocerebellar ataxia type 3, testing, vertigo, Wikipedia
It’s been an … interesting … couple of months, for reasons that I’ll explain at some point in the future, when I can get into it without violating confidentiality of a client. For now, just accept that I’ve been fairly busy with a variety of projects, including the process of adding this loving big boi to our household:
That’s Marmaduke, who is about three years old, and who needed to be rehomed after the passing of an old friend of mine. We’ve been happy to give him a new home, though our other two cats are somewhat less thrilled. But no worries, he’ll fit in fine in a couple of months.
But writing about Marmaduke isn’t my goal, here.
Rather, I wanted to share something that I’ve been thinking about lately: my seeming calmness about having SCAR8.
My primary care doc retired the end of last year. So I’ve been in the process of finding a new GP, and that means filling out new patient paperwork, arranging for medical files to be transferred, etc. It also means that I’ve been thinking about how to explain my family history with MJD and what my genetic testing indicated. Because I don’t expect most GPs to have any knowledge of MJD, let alone what I evidently have — they’re just too rare.
And thinking about that, I realized that I have come to calmly accept this fact in the last few months. Why is that?
I mean, on one level it’s the sort of obscure medical problem that could make someone fall into a tailspin of depression and anger, raging about the unfairness of it all, or despairing how so-called orphan diseases are largely ignored by our medical care system. After all, this has changed my life in some significant ways. I’ve had to quit as a practicing conservator, a profession I loved and was very good at. I have more physical problems related to the disease: more pain, hand spasms, Restless Leg & Arm Syndrome, episodes of dizziness/vertigo, and some annoying lower GI and bladder issues.
But all of those symptoms are relatively minor, and there are things I can do to help deal with them. My usual Rx meds manage these new pains well. The hand spasms are rare, and I can usually just stop doing whatever it is that sets them off. Low-dose THC edibles help control the RLS/RAS and help me sleep better at night. Meclizine manages the balance and dizziness fairly well. And I’ve just learned new cues from my body to manage the GI/bladder issues. I mean, it’s not ideal, it wears me out each day and I’d rather not have to worry about it, but all in all it’s mostly just an annoyance at this point, rather than a debilitating diagnosis.
And, honestly, just knowing what is likely going on allows me a great deal of psychological space to cope with it. Because, remember, I grew up watching family members manifest symptoms of MJD before we even had a name for it. There was no genetic test for it. There was no treatment. There was no explanation for what was going on, or how to cope with it. The symptoms weren’t understood, and neither was the likely progress of the disease. It was just the family curse.
So I have a more sanguine perspective because I can afford to. I have “MJD-lite” not MJD itself. SCAR8 is rare enough that the progress of the disease is uncertain, but I am reasonably sure that I should be able to live a normal lifespan without it becoming too onerous.
And I don’t particularly want to spend any significant part of that lifespan seeking some kind of miracle cure. Medical science can be amazing, and in some really personal ways it has had a huge impact on my life (I’m thinking specifically of my stents to correct a heart defect seven years ago). But there are limits to modern medicine, and what it can do. Wasting a lot of time, energy, and money trying to seek out some elusive treatment strikes me as … unappealing. If there was any indication that there was some sort of viable treatment, I’d likely have a different opinion on this. But there isn’t.
So, better to just get on with the business of living, to the best of my ability. After all, there are cats that need petting.
Jim Downey
Filed under: Alzheimer's, Bipolar, Connections, Depression, Failure, Faith healing, Survival | Tags: Alzheimer's, blogging, cats, dog, health, Her Final Year, jim downey, medicine, mental health, Nashville, pets, Puppy Rescue Mission, survival
“How far did you drive?” she asked, a noticeable touch of twang in her voice.
“From Columbia. Missouri.”
“That far?” She looked honestly surprised. “Y’all are very, very kind people, to drive that far.”
* * * * * * *
A couple weeks into the New Year, a Facebook friend forwarded a pic to me. It was of a medium sized dog which kinda-sorta looked like a German Shepard.
“They’re looking for a home for this pup. She’s here in the KC area.”
* * * * * * *
Thirteen years ago, we adopted a stray. A stray we named ‘Alwyn’.
He was a great dog.
And he did a lot to help heal me, following the closing of our art gallery the previous spring. I was deep in the depressive trough of my bipolar cycle, feeling like I had failed. Having a new pup to love and train helped pull me out of that darkness.
And saw me through the many troubled times ahead, being a care-giver for my mother-in-law through the arc of Alzheimer’s, with all the stresses and demands that included. There’s nothing quite like a brisk walk with the dog for clearing your head. And the routine of it, walking a mile or so every morning, probably helped keep me alive as well as sane.
Alwyn died suddenly and unexpectedly when he was about 8 years old. Since he was a mutt and in good health, we had expected to have him for at least another four or five years. But it was not to be.
I grieved for a long time.
Then, a year or two ago, my wife and I decided that we were ready to welcome a new dog into our lives, and that we would keep our hearts open to that possibility should one come along who needed a home.
* * * * * * *
I passed the picture along to my wife. “What do you think? Her name is ‘Ramali’, and she’s from Kuwait.”
She thought the dog looked like a good candidate.
I got in contact with the folks from Puppy Rescue Mission. Ramali was still available. We decided to apply for adoption.
It took a week or so, with the application, and discussion, and background checks and everything. We had someone come look over our home and make sure it was suitable (fenced yard, decent neighborhood, no evidence that we were running a meth lab or conducting animal experiments, etc). The folks at the rescue were polite, helpful, and thorough. A few days later we drove to Kansas City and picked her up from where she was being fostered. Here she is on the trip home:
Ramali was about 14 or 15 months old, and hadn’t had the best life. She’d come over to the States with a service member, but things didn’t work out. After bouncing around a bit, she came to the attention of the the rescue, thanks to the microchip she had, and had been transferred to the foster home while they sought to get her a permanent place.
On the application for adoption, there were the expected questions about our experience with animals, previous pets we’d owned, and our thoughts about training and discipline. We’d filled all that out with confidence that we’d be able to deal with whatever challenges Ramali might have — both my wife and I had always had dogs, and I had always had a great deal of success at working with dogs to train them, whatever their background. We expected that while Ramali might have some issues due to her previous home life, that we’d be able to work through them without too much a problem.
We were wrong.
* * * * * * *
Well, we were right, for the most part. There were some problems she had that we were able to work through. She was a sweet pup, eager to please, though high-energy. She just needed a stable home and regular exercise, combined with consistent training and attention. Within the first couple of weeks we had gotten past the worst of it, and she was learning to be well-behaved while walking on a leash, or playing, and was making real progress on almost all fronts.
The one problem was her response to cats. To our cats inside the house. To the neighbor’s cats she saw through the window. To cats she saw on our walks. At first I thought it would just take a little work as she adjusted to living in a home with cats, and that as she settled into some stability, the problem would pass with regular discipline. That had always been both mine and my wife’s experience in introducing dogs into a home with cats, or cats into a home with dogs. After a week or two everyone would calm down, and they’d get along pretty well from there. I expected that the same tactics would work with Ramali’s problem with our cats.
It didn’t.
In fact, it got worse over time.
I started reviewing online resources about training a dog to deal with this problem. I consulted friends with experience having both cats and dogs. From all those resources, it looked like we were doing the right things, and that if we stuck with it, it’d work eventually.
It didn’t.
Finally we consulted our vet of 20 years for his thoughts. After discussion with him, he recommended an animal behaviorist in the area who has a great reputation for working through such problems. We got in contact with her clinic, and after a long discussion they said that they probably could help us with Ramali, but that it was likely to take months or even years to succeed.
That’s when we told the rescue that we just couldn’t keep her. It wouldn’t be fair to our cats, who had basically taken up permanent refuge in the climbing tree I had constructed for them last year, any time Ramali was in the house and not shut up in her crate for sleeping at night. It wouldn’t be fair to Ramali, who would have to be kept on a close leash indoors at all times to prevent her from attacking the cats until the training could change her behavior. Ramali needed to be rehomed, someplace where there weren’t cats, and where she could have a sane and normal home life. The folks at Puppy Rescue Mission agreed, and set to work to find her another home.
* * * * * * *
They did find a good home for her, one without other pets. In North Carolina. Arrangements were made for transport. We said we’d be willing to drive her to Nashville (about halfway), where she’d be put up in a pet hotel overnight until the second half of her journey could be done the next day.
We got to the pet hotel about 2.5 hours late, due to a massive traffic jam an hour or so north of Nashville. But Ramali had been a good girl, and stayed pretty calm and relaxed through it all. We got her situated inside the kennel, then were chatting with the owner before we got back in the car to go to our hotel.
“How far did you drive?” she asked, a noticeable touch of twang in her voice.
“From Columbia. Missouri.”
“That far?” She looked honestly surprised. “Y’all are very, very kind people, to drive that far.”
“She deserves it,” I said. Which was true enough. But I had also done it for my own selfish reasons. And to pay an old debt.
I hate to fail at things. But still, being human, and ambitious, I do fail.
Alwyn had helped save me after a previous big failure. Adopting him had been mostly about healing myself.
Adopting Ramali had been about healing her. And though we couldn’t keep her, we’d made progress in healing her. Sometimes, all you can do is be part of the chain; doing what good you can and then passing along the person, or pet, or thing, to the next link in the chain. Driving to Nashville was my way of closing that loop the best I could.
Goodbye, Ramali, now known as Pepper. Have a better life.
Jim Downey
Filed under: Architecture, Art, Humor, Mark Twain | Tags: architecture, art, cats, Greystoke, humor, jim downey, Mark Twain, Pudd'nhead Wilson, Wikipedia
“A home without a cat — and a well-fed, well-petted and properly revered cat — may be a perfect home, perhaps, but how can it prove title?”
― Mark Twain, Pudd’nhead Wilson
So, a couple weeks ago I had an idea … which, if you know me or have followed this blog for a while, can sometimes get me, well, not exactly into trouble, but can lead to things not entirely intended. Anyway, the idea was to build a climbing tree for our cats, which might take advantage of the 12′ ceilings we have in our historic home (ours is the next-to-last in that article).
Here’s the (probably) final result:
Now, for those who may be curious about the process of making this cat tree, there’s more below.
We have a huge slump of an ancient catalpa out in front of the house, near the road. Here it is:
It’s been a favorite of photographers and children for generations, and overall is doing pretty well. But one large part of it died a couple of years ago, and we’ve delayed removing it. That part is the pair of major mostly horizontal limbs which come out from the tree towards the viewer in that image.
After some discussion, my wife and I decided that the lower limb could serve as the basic structure for our cat tree. So I cut it off, and then trimmed it and started removing the bark, as seen here:
It’s a little hard to tell scale in that pic, but that limb is about 12′ from base to either tip, and about 12′ from tip to tip.
After removing most of the bark, we somehow managed to get the thing in through the front door and then into our living room. Without breaking any windows. Or bones. This was trickier than it might sound. And did require a bit of additional editing with a chainsaw on some of the various extensions. Of the tree, I mean.
So, we got it into approximate position, then braced it with a couple of chairs. Here it is, with Greystoke (our younger cat — he’s not quite two) investigating:
Next, we got it mounted to the wall securely. This required some stacked-lumber spacers in order to make sure that the branches cleared the windows and curtains safely. The way I mounted it was to mount the lumber to the wall, then I added heavy hook brackets to the lumber, and cinched the tree down with rope. That way, if it was ever necessary, we could detach the tree fairly easily. Here it is mounted, with a 12″ cardboard concrete tube I intended to use for part of the ‘furniture’:
Almost as soon as it was secured, Greystoke was wanting to explore:
That’s an 8′ ladder, by the way. Both of our cats love climbing on it anytime we get the thing out.
Hello, there!
I started adding elements to the tree: a couple of simple platforms, and a horizontal bridge which would support a carpeted tube. These (and all the subsequent elements) were mounted using a combination of metal shelf brackets and rope.
At this point I also started wrapping cotton rope around the branches, to make them more cat-claw friendly/safe:
The branch on the left was at enough of an angle to let the cats climb it easily. On the right, I decided to put in steps similar to a ladder, but spiraling as they went up to make it easier for the cats to climb:
Next I settled on a final design for the tube:
Then it was time to carpet it, as well as add carpet to the ladder steps and the platforms:
Covering the steps and platforms just required a rectangle of carpet the correct size and some double-sided carpet tape. To do the tube was a PITA using a combination of carpet tape, construction adhesive, and hot glue. I recommend checking YouTube for instructions. And gloves. Definitely you want gloves.
Here’s the semi-finished tree, before I added a final platform on the upper right, or some ‘interactive’ toys/elements:
The (probably) finished final result again:
Complete with a suspended ‘bird’, a dangling rope, and a couple of simple wood spinners. Note that Greystoke, instead of being on the tree, is snoozing in his favorite chair below. Typical.
But he has already started climbing on it, playing with things, looking out the windows, climbing *into* the windows …
Silly cat. But that’s why we built it.
So, all of the wood and most of the hardware used in making the tree was stuff which I already had leftover/recovered from other projects. The tree as shown in the final version (which may get tweaked a bit over time as we see how the cats use it) has about 800′ of rope on it, and that was the biggest expense. All together, had I had to buy both rope and all the wood & hardware, the out of pocket costs would have been about $200 (I actually spent about half that). And it took me a total of about 30 hours labor, in 2-3 hour sessions over the last couple of weeks.
Fun project. I was a little concerned that wrapping it with so much rope would detract from it feeling like a ‘tree’, but it has maintained that organic feeling, even with the other elements I added. I’m pretty happy with the final product.
Jim Downey
Filed under: Humor, Writing stuff | Tags: blogging, cats, entirely too cute, Greystoke, humor, jim downey, kitten, Shakespeare, writing
A drama in three acts.
ACT I
SCENE 1: A bedspread, The Queen Mel in her comfort. A quiet, rainy summer’s day. Enter the young challenger.
ACT II
SCENE 1: A bedspread, The Queen Mel defending her position.
ACT III
SCENE 1: A bedspread, the young Lord Greystoke surveying his new demesne.
Exeunt.
Jim Downey
Filed under: Ballistics, Book Conservation, Connections, Guns, Humor, Writing stuff | Tags: 1776, ballistics, BBTI, blogging, Boberg, book conservation, bookbinding, cats, entirely too cute, humor, Independence Day, jim downey, kitten, predictions, Science Fiction, St. Cybi's Well, writing
Remember this little fellow?
That was three weeks ago. Well, here he was about an hour ago, watching me from a rag bag under my workbench in the bindery:
Kinda hard to tell from those pics, but he’s grown and is starting to take on more “cat” characteristics, though he is still *very* much a kitten. And my shins have the scratches to prove it.
* * *
Been busy: Ammo test results in the Boberg XR45-S
Prep & clean-up took most of a full week. But good to get that test sequence done.
* * *
“Spirit of 1776”? It’s a little early to be invoking Independence Day stuff, isn’t it?
Yeah, I know. There’s more than a month before we get to that.
But that’s the number of this blog post, in the running tally which WordPress keeps. Who woulda thunk it?
Jim Downey
Filed under: Writing stuff | Tags: blogging, cats, Greystoke, jim downey, kitten, Tarzan, trust
He doesn’t even flinch a whisker when I pet him while he sleeps in my lap like that.
That’s trust.
Trust almost beyond what I can even glimpse an understanding of. So innocent. So pure.
Welcome, Lord Greystoke.
Jim Downey
Filed under: Alzheimer's, Health, Humor, Wales | Tags: blogging, cats, health, humor, jim downey, St. Cybi's Well, Wales
(See postscript at the bottom.)
This is Hillary: 
She’s named after Sir Edmund, because when she was young she always wanted to climb things. She’s no longer a youngster, and just turned 14.
For the most part, she’s been in good health, though in the last year she started losing her eyesight, and just recently she’s had some minor strokes. The results of this are that she’ll just get confused for a while, sometimes tend to walk in small tight circles, and occasionally throw up. But our vet says that she’s not in any real pain, and as long as she continues to bounce back from those episodes, there’s no reason why we can’t keep her and love her with a little extra care. We’re used to caring for people and pets which need a little additional attention, so it’s no big deal.
This is Mel:
As you can see, she also likes climbing on things. But she’s named ‘Melyn’ for the color of her eyes. It’s Welsh. Yeah, as you might gather from St Cybi’s Well, we enjoy Wales, and my wife has been learning the language for a decade or more. Mel’s about 4 years old, and a bit more of a rascal. The two cats get along tolerably well.
Our bed is on top of a stack of drawers. One of Mel’s favorite games is to pull open those drawers. And in particular, the one which is right where my foot needs to go when I swing my leg out of bed. This is especially fun when it’s the middle of the night and I’m just getting up to go to have a pee (ah, the joys of middle age … ). I’ve cracked the side of my bare ankle on the side of that drawer too many times to count. But even *I* will learn eventually, so I’ve gotten into the habit of swinging my leg out even further, and then sweeping it in slowly so as to push the drawer closed if it has been left open by dear Mel.
Sometime last night, Hil seems to have had another minor stroke. And after getting down from the bed, threw up. Fortunately, she did so on a small throw rug (hmmm … ). It woke my wife up, so she dealt with it, and then took Hil in to where the litter box is, thence to the water bowl in the bathroom. Since Hil was a little confused, and my wife wanted to get back to sleep rather than sit and watch the cat while she decided whether or not to have some water, she just left Hil there. This is fairly normal — give Hil a reference point, and she’ll manage to sort out where she wants to go eventually.
Usually, by the time I get up in the morning (I get up first), Hilary has made her way downstairs and is politely waiting for breakfast. Mel is more … demanding. And serves as a very effective wake-up clock if I try and sleep in. As the saying goes, there’s no snooze button on a hungry cat. So this morning we went through the usual routine. I got up, swung my leg over, closed the drawer, and put on some clothes. My wife told me that Hillary had had an episode earlier, but that she had dealt with it. Mel noisily demanded breakfast.
So I went downstairs, Mel close at heel the whole way. Got the catfood out, took it to where their feed bowls are. Mel dug in, but Hil wasn’t to be seen. I checked around, didn’t see her downstairs, but figured that since she had been sick in the night, she might not be hungry and was probably curled up somewhere in the upstairs, would come down when she felt like it. No biggie — I could check on her later if she didn’t appear.
I got coffee, and went about my wake-up routine. Normally this includes getting in a walk, but today we have heavy thunderstorms and I am not THAT dedicated to getting in my exercise. Same for my wife, who thought she’d just catch a little extra sleep after her disrupted night.
After an hour or so of coffee and reading online, including a lot of attention from Mel but no sign of Hil, I figured I’d pop upstairs, see if I could find Hillary, and see how she was doing and whether she wanted some food yet.
I went upstairs. My wife was waking up, doing a little reading in bed. She said she hadn’t seen Hil yet this morning. I checked around upstairs in all her usual haunts. No luck.
Hmm.
Yeah, you guessed it. I thought to check the drawer below our bed, which I had closed without looking earlier. There she was, happily snoozing in amongst the clothing.
I brought her downstairs, got her some food. Mel watched, yellow eyes glinting. And I think I detected a slight smile on her face, as well.
Jim Downey
A postscript: Hillary had another and much larger stroke about 12 hours after I posted this. She passed away peacefully in the early hours of the next morning.
I mentioned the other day we had a new family member. Here are a couple of informal pix of her:
Her name is Melyn, or “Mel” for short. It’s Welsh (naturally), and refers to her striking yellow eyes (which aren’t all that noticeable in these snapshots). She’s about 2.5 years old and probably about 14 pounds – will know for sure when the vet comes to check her out next week.
And she seems to be taking to us pretty well. Even THE DOG doesn’t weird her out too much.
Jim Downey
Filed under: Humor, movies, SCA | Tags: anachronism, cats, combat, fighting, historical recreation, history, humor, jim downey, Peter Woodward, pets, rescue, SCA, video
I’ve mentioned my earlier involvement in the SCA previously. And generally I’ve always had an interest in different historical recreation groups, particularly those which strive to do the different types of combat throughout history well (one of the reasons I really like Peter Woodward). So naturally I have to share this brilliant little film short:
Hilarious.
Went and rescued a kitty today who was no longer wanted. She’s currently isolated in one of the bathrooms, getting slowly acclimated to being in a strange place with strange monkeys, another cat, and a DOG!!! I promise pix once she’s more settled.
Jim Downey
Communion Of Dreams 