Communion Of Dreams


Machado-Joseph Disease: I ain’t no wizard.

“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



Machado-Joseph Disease: testing time

So, late Wednesday FedEx delivered this:

That’s the sample collection kit for the MJD genetic test.

The paperwork included indicated that I could just take it to a local Quest Diagnostics and they would do the blood draw and send the samples off. I made an appointment for the next morning, and did just that. That done, now we just wait for the results. Ideally, I’ll get a copy of the results (I’ve formally requested one, and they should comply, since that’s part of the HIPPA guidelines) and not even have to meet with the Neurologists at the local large-institution university hospital which shall remain nameless. About the very last thing I want to do is deal with those people again. Yes, that experience has continued to annoy me.

And on that point, on one of my recent morning walks (I walk ~3 miles most mornings), I found myself walking with a couple of neighbors for part of the time. They were chatting about healthcare for another neighbor who was recently injured, and the conversation turned to the local large-institution university hospital which shall remain nameless. I mentioned that I’d recently had to deal with the Neurology Clinic there, and they both exclaimed words to this effect: “Oh, Jim, why the hell did you do that to yourself?!?!”

Yeah, the local large-institution university hospital which shall remain nameless has a bit of an image/reputation problem with the locals.

* * *

Late last week I also received my state Medical Marijuana card. I decided to apply for it, as part of my decision to be more active in managing my symptoms, whether they’re due to MJD or something else. Approval was all but certain, since on the ‘chronic pain’ criteria alone I qualified, having been on mild opioids for 10+ years. As I mentioned in one of my early posts about MJD, I’d noticed a persistent uptick in my use of my Rx pain meds (rather than just the occasional up and down variation I see over the months), particularly to aid in sleeping. Symptoms like Restless Leg/Arm Syndrome tend to disrupt my sleep in the early morning hours, contributing to spiraling problems associated with lack of sleep.

So I wanted something to help me sleep, without increasing my use of opioids or getting into a cycle of taking additional Rx meds. Many of my friends who deal with chronic pain has found MMJ (Medical MariJuana) to be efficacious in dealing with sleep problems, so I figured it was worth a try.

Let me tell you, there’s nothing like going to a medical cannabis dispensary for the first time to make one feel *REALLY* old and out-of-touch. Seriously, I gave the budtender a nice tip not only for his assistance, but also for not calling me “Gramps”.

The whole experience was a little overwhelming, even though I had done my research and spent a fair amount of time exploring products on the dispensary’s website. It’s clear that this is still an immature industry, figuring out how to do branding/marketing, communicating with different clienteles, tapping into demographic groups who are not already savvy about cannabis use.

But I was able (with the help of the budtender) to select some different products to try. 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 that’s what I’m doing at present. So far, it looks promising.

* * *

Not all the tests we face in life are big. Or obvious. Or dramatic.

Sometimes they’re just a simple challenge: how to deal with this small problem. How to help someone. How to get through the day, or night.

With luck, in another couple of weeks I’ll have more information about my MJD status, and know whether and to what degree I have the disease. I was always very good at taking tests in school, and those I’ve faced in my life since I like to think I’ve passed reasonably well.

Waiting is hard. But it is just one more test to manage, piece by piece, day by day.

Jim Downey



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: Changes in attitude, changes in longitude

Yeah, I know it doesn’t scan as well. But I don’t want a noted songwriter’s lawyers to sue me. And it’s more accurate for my use.

Yesterday my sister (who, as I’ve mention, has MJD) had her semi-annual check-in with her neurologist’s office, this time a virtual chat/exam with a staff Physician’s Assistant she hadn’t worked with previously. I popped over to St Louis so I could be with her for it, as it would give me a chance to see how it was done, have an introduction to the P.A., and get a direct handle on her current condition and challenges.

And I wanted to talk a little about the difference between this virtual session and my experience with the local large-institution university hospital which shall remain nameless. Obviously, I’m not going to get into health/medicine details, and I have cleared this with my sister.

The difference was striking. Rather than an almost patronizing “I know about this, because I’m the doctor” that was the overall vibe of my exam, the P.A. shared that she herself has M.S., and so personally understands the difficulties of having a neuro-muscular disorder which may be treatable, but for which there is no cure. Even with the limitations of a Zoom call, she exuded empathy, nodding as my sister described recent challenges and changes to her condition, discussing what meds have been working and which needed to be tweaked. They went over vital stats, overall health and wellness, chatted about the possibility of different kinds of therapies which might help, and so forth. The whole thing was personal, friendly, and very helpful.

Now, my sister has a diagnosis of MJD that has been confirmed by the genetic test, and a long care history with this neurologist and their staff. So none of that is an issue, whereas in my case things are still indeterminate (frustratingly so, as I’ve noted). So that’s certainly a very big difference between us, and the care we might expect to receive.

But as my sister was discussing her symptoms with the P.A., I couldn’t help but check off how I had a less severe version of most of them. And I couldn’t help but notice how the P.A. really listened to her, and her own assessment of how she was doing, what she was experiencing. Lastly, I couldn’t help but compare the care and attention she had received versus how I had been treated in my initial exam and in follow-up communications.

Now, you might think that comment is a little harsh, given what I said in this blog post. But I haven’t mentioned here that after that post, I received a response from the Attending Neurologist which … rather curtly doubled-down on the attitude of the initial assessment, and said they knew what they were doing, he knew more about the disease than I did, and that I was presymptomatic for MJD in all their tests, whatever I might happen to think I was experiencing. Though he did grudgingly allow that the genetic test may show something, and if so they’ll address that.

Well, actually, no, they won’t. Because once I have the test results, whatever they show, I’ll be finding a new neurologist. I’ve just seen the difference in how people can be treated, and I know which way I want to go.

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