Communion Of Dreams


Machado-Joseph Disease: brief update

As the title indicates, this is just a brief update for those following this story.

I’m still waiting for the paperwork for the genetic test to come through. This isn’t surprising, since the local large-institution university hospital which shall remain nameless moves at the speed of most bureaucratic institutions. It could show up any time, or not for weeks. We’ll see.

Since there isn’t any kind of ‘cure’ for MJD, and the disease progresses slowly, I think that unfortunately the medical community doesn’t tend to think that it is a pressing issue. If I had some kind of cancer, or a serious heart problem, testing and treatment discussions would have been much more aggressive. I know — I’ve had a serious heart problem.

I noted in my last blog post that I have no intention of continuing care with the Neurologists at the local large-institution university hospital which shall remain nameless. I have also decided that I need to take my own care into my hands for at least the time being, until I have the test results back and arrange for a new neurologist. I know what treatments are typically used to manage the symptoms of MJD patients, as well as what my family members have found helpful, at least in the early stages of the disease, and I have taken steps to use the same/similar treatments. If it turns out that I don’t have MJD, none of these steps will cause problems.

So right now everything is about mitigation. My balance and flexibility exercises have already shown positive results. The Restless Leg/Arm Syndrome continues to show up periodically. Hand cramping and tremors still happen, particularly after I have been using my hands for intense work. Episodes of vertigo still hit me, particularly when I rotate my head or bend over. Shooting pains and ongoing aches still happen in both hands and feet, though not usually at the same time.

And something new, that I don’t recall hearing about from any of my family, though it is a classic symptom of Type 3 of MJD: instances of blurry/double vision. This isn’t debilitating (at least not yet), and only happens when I am trying to focus on something up close, but it was very surprising and disorienting the first couple of times it happened. If you’ve ever worn multi-focal lenses, it kinda feels like that when you first put them on. I’ve since learned that simply shifting my focus further away resolves the problem instantly.

So that’s where things stand. While I wait for the test, I’m just doing my best to learn to cope with the symptoms. It’s been an interesting process of adjustment to my new reality, and again confirms just how plastic/adaptable humans can be.

Jim Downey



Machado-Joseph Disease: Self care.

Yesterday morning, after having had time to digest things from Monday, I sent a message to my “care team” at the local large-institution university hospital which shall remain nameless. It was a less accusatory and more distilled version of my last blog post, outlining my thoughts and concerns about how the assessment had gone.

Why?

Because in this day and age, you have to be your own best advocate as a patient.

And it worked: within two hours one of the neurologists called me directly to discuss my concerns. It was a good discussion, actually, with a fair amount of back-tracking and back-fill on his part, along with assurances that they really DO understand that this is something that needs proper and prompt attention. REALLY.

I expect, cautiously, that going forward things will be more a meeting of the minds rather than the doctors assuming that they have a monopoly of knowledge about this disease, and will pay more attention to what I say I am experiencing and think it means. But we’ll see.

And that touches on what I wanted to write about today: self care. Or, to borrow a phrase from my old economics textbooks, enlightened self interest.

There are good people in the world. In fact, as cynical an old bastard as I can sometimes be, I think that most people actually want to do the right thing in most situations. We’re a social, collaborative species.

And I think that most medical professionals want to do everything they can to help their patients as one of their basic motivations. Yeah, sure, a bunch of other motivations can also come into play, but I doubt that there are many medical professionals who are truly only in their job for the opportunity to lord it over others. But sometimes, in the stress and demands of their jobs, they need a reminder that you’re a person with a medical concern, and not just a medical puzzle to be solved. So, as I said, you have to be your own best advocate. Recognizing that fact after my experience Monday was an important step for me on this journey.

It also reminded me that I need to shift my thinking in some other ways. Specifically, that whatever I can do to improve my condition will just be a help dealing with it over the long haul. The last time that I learned this was after the stents were installed six years ago, and I had to go through cardio rehab, since about a third of my heart had never fully developed. That was a hassle. But it shifted my thinking, strengthened my heart, and gave me more strength and endurance than I’ve ever had in my life.

So this morning, for the first time in decades, I got back to doing my old martial arts exercises (adapted for my age and condition). The stretching and flexibility components will help me with the early stages of dystonia, and the katas and bo-staff work will aid greatly with my balance and coordination. They’re not going to reverse the effects of MJD, but they will help me make the most of the remaining abilities I have for as long as possible.

And while I was appalled by how inflexible I’ve become, and grateful that there was no one in the room watching me, it felt good to be doing something that I know will help. I had been considering taking up Tai Chi or yoga, but decided that the deep old knowledge I had from my years as a student and instructor of Jujitsu would give me comfort and would be one less barrier to making this a routine in my life, as my (almost) daily 3 mile walk has become since my stent procedure. And comfort is an important component of self care.

Jim Downey



A path out of darkness.

As I’ve noted previously, I’m mildly bipolar, with my ‘natural’ bipolar cycle running about 18 months. I had noticed the start of a psychological downturn three or four months ago, following the intense boost that came with the discovery and correction of my cardiac artery blockage and subsequent recovery. Since I don’t usually realize that I have taken a downturn until it has gone on for a while, I’m guessing that I’m approaching the bottom of the cycle.

* * * * * * *

Some 50 years ago, my father-in-law (who I never met — he passed away before my wife and I knew each other) put in a simple brick walkway around two sides of his garden. OK, that doesn’t sound like too big a deal. But his garden was almost a full acre in size, and the walkway more than 100 yards in length. Yeah, it really is that long.

After his death, the garden was reverted back to lawn. And slowly the brick walkway was reclaimed by that lawn.

But since the house remained in the family, memory of the walkway wasn’t lost. Some time back the walk was uncovered, and for the last decade or so we did a pretty good job of keeping it clear and used. Here’s a pic of some of it:

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Note the box turtle in the patch of sunlight in the upper part of the pic.

* * * * * * *

I sent this in a message to a friend this morning who had asked if I was feeling more healthy these days:

Maybe?

I do feel a lot stronger and more … vital. But I really don’t want to be one of those ’50-something year old guys who discover the power of exercise!’ At best, it’s annoying to most people. At worst, it’s obnoxious able-ism. My situation, both my peculiar genetic problem and my lifestyle permitting me to get a LOT of exercise time in, is extremely unusual, and not something I can claim as being due to my own effort.

Yeah, I think a lot about this.

* * * * * * *

For a couple of years we’ve talked about rebuilding the brick walkway, because while we’ve been able to keep it uncovered, it is nonetheless ‘sunk’ relative to the surrounding lawn. Meaning that it collected grass clippings and mud, tended to puddle, and retained ice and snow for a prolonged period. Plus there were sections which had been damaged by construction and heavy  trucks which came into the yard to do utility and tree work.

But redoing a 300’+ length of brick walkway is no small task. To do it correctly would require a lot of work and a fair amount of expense for proper landscape edging, landscape fabric, gravel/chat, and sand. And if we were going to go to the trouble of redoing it, we wanted to do it correctly and expand it a bit.

About two weeks ago we ordered the first four cubic yards of chat, got some of the other materials, and got started. Since the edging material we’re using comes in 60′ lengths, we decided to use that as the operative size of each ‘section’ of the walkway. The first step was to remove the old brick walk:

20160907_114300

Then expand the bed, take it down, and level it out:

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Then put down the base layer of chat on top of the landscape fabric:

20160912_110315(That’s about 10,000 pounds of chat, by the way.)

And then start putting down brick. Here’s how far we’ve gotten as of yesterday afternoon:

20160917_135339

With luck, we’ll finish getting the rest of the bricks laid in this ‘section’ today or tomorrow. Then we’ll be about one-fifth through the whole project.

* * * * * * *

As I’ve noted previously, I’m mildly bipolar, with my ‘natural’ bipolar cycle running about 18 months. I had noted the start of a psychological downturn three or four months ago, following the intense boost that came with the discovery and correction of my cardiac artery blockage and subsequent recovery. Since I don’t usually realize that I have taken a downturn until it has gone on for a while, I’m guessing that I’m approaching the bottom of the cycle.

One of the things I learned long ago is that doing something constructive helps me cope with the depressive part of my bipolar cycle. By focusing on something in discrete chunks, I can slowly ‘walk’ out of my depression, since I can see tangible progress happening on something.

We probably won’t be able to finish the full 300’+ of the brick walkway before winter sets in. But that’s OK. Being able to spend a couple of hours working on the walk each day (when the weather permits) helps. It’s good exercise for my body. And it helps to keep my mind from falling too far into the darkness.

 

Jim Downey



Raising cane.

(So, been a while, eh? Yeah, it has. But no worries, things have been going very well, through a lot of minor and not-so-minor changes. More about all of that will emerge as I get back into regular blogging — you’ll see.)

A few weeks back a friend posted a question to a discussion group along these lines: what was a good, basic self-defense item which you could have under most situations which would be innocuous yet effective?

A lot of things were suggested, from the simple to the absurd. Yeah, OK, I’m a little opinionated.

But after a bit, a general consensus which emerged was that a walking stick or cane would fit the bill. And people posted links to various such items, ranging from the very basic to the traditional to the ultra-modern. There are a HUGE selection of different options out there, if you just do a search for one. Looking through a bunch of different choices, I got to thinking that it should be pretty easy for anyone with minimal woodworking skills to make their own walking stick to their own specs, for a lot less than most of the items was seeing cost.

So I set out to see what it would take. And I set my goals:

  • The stick should be made from readily available materials, with minimal tools.
  • It should be completely free of all metal, so as not to arouse suspicions when being scanned.
  • It should look and function as a real walking aid, not just a disguised cudgel.
  • It should nonetheless be an effective defensive tool.
  • It should cost $25 or less.

I stopped by a local home improvement store, and found the following:

1

That’s a 1.125″ rubber foot for about 50 cents, a wooden (oak) decorative cap (finial) that was about $4, and a hickory replacement handle for a sledgehammer or axe for about $14. Here’s another pic:

2

I chose hickory because it is well known to be a hard, dense wood. Next pic:

3

I removed the metal screw from the finial, then used a spade bit to expand the hole to about an inch. I used a wood rasp to make the mounting end of the replacement handle likewise about an inch in diameter.

Next:

4

Then I added some wood glue, and tapped the finial onto the replacement handle.

Next:

5

I did the basic shaping of the finial into a knob suitable for my (large) hand.

Next:

6

Here’s the top of the finial. I inserted a bit of .375″ dowel into the hole with some wood glue, then allowed it to dry. When it was dry, I rasped the whole thing down to a smooth hemisphere about the size of a tennis ball.

Next:

8

That’s the overall stick. It’s about 37.5″. Note that it is no longer quite the same size or shape of an axe handle — I spent an hour or so with the wood rasp, and took it down a fair amount. There it’s smooth, mostly uniform (no longer has as much of a swell in the wood up by the head), and about .25″ narrower and thinner.

Next:

7

This just shows the finished width of the handle — about 1.5″. It’s also just about 1.25″ thick. Both of those dimensions are a little larger than your typical commercially-available cane, but it no longer looks like an axe handle. After I was done with the rasp, I smoothed it out with some 60-grit sandpaper, then some 120-grit, then some 220-grit. I wanted it smooth and ‘finished’, but wasn’t worried about it being super smooth.

Next:

9

I then gave it three coats of urethane stain (dark walnut), sanding lightly between each with 600-grit sandpaper. Then I added the rubber foot and a simple braided leather lanyard.

Next:

10A detail of the head.

Next:

11

Another detail of the head.

Next:

12

Holding it with the lanyard around my wrist.

Next:

13And another view.

That’s it. Simple, effective cane/walking stick. Nothing metal or high-tech about it to alert someone that it is anything other than a walking stick. Total cost under $20, since I already had some simple tools, sandpaper, and stain on hand. And a total of a couple hours of labor.

Something I want to note: the handpiece/finial is not intended as a striking surface. You don’t need any additional bulk or weight there for this to be a very effective defensive tool. It’s more like the pommel on a sword. In fact, the overall length, heft, and other measurements is very similar to the rattan broadsword used in SCA combat. As such, I know full well just how effective such a tool can be against another opponent in even confined spaces. And now that I’m an old guy with a couple of cardiac stents in place, I need a good walking stick with me no matter where I go …

 

Jim Downey