Communion Of Dreams


Machado-Joseph Disease: Management trainee.

This morning I picked up my monthly meds. Basically, the same set I have been taking for almost a decade.

And as I was going through and organizing things, I realized something interesting: I’m taking *way* less of my opioids (Tramadol and Tylenol #3) now, thanks to my Medical Marijuana.

The growing MJD symptoms had started cutting into my small reserve of the opioids which had been more or less stable for years. I mentioned this in one of my first posts about MJD:

But of course, being aware of — even moreso paying attention to — more pain is, well, painful. Distracting. Annoying. So in terms of my perception, my ambient pain levels have gone up significantly in the last few weeks. I noticed recently that my use of my prescription pain meds (Tramadol, Tylenol 3 with codeine) that I’ve been on for about a decade for an intercostal tear has ticked up recently. Now, that happens, particularly when I am doing some strenuous exercise/project. There’s a sort-of natural ebb & flow to it through the year, with some months being a little higher usage, some being a little lower usage. But since we finished installing a new stamped copper ceiling in the kitchen, I haven’t been engaged in anything very physically demanding. That was six weeks ago, and I should have reverted to something closer to baseline. I haven’t.

By the time I got my MMJ card two months ago, I had pretty much used up the small reserve I had. That was a little nervous-making, since I really didn’t want to increase either the power or amount of opioids I took.

Well, in just two months of having access to MMJ, and about a month of understanding how I can best use it for my needs, things have changed. A lot. Like, I’m now taking half the amount of opioids I was (same for alcohol intake). In this short time I have already replenished my reserve. I could probably cut that further, but I’m still just using the MMJ products in the evening (very mild dosages) and overnight (mild dosages).

This disease, and the version I have, is progressive. With luck, however, I should be able to manage the symptoms, and particularly the annoying pain issues, without increasing my intake of opioids for a while. We’ll see — it’s all about learning how to manage things.

Jim Downey



Machado-Joseph Disease: Management

One of the things people with MJD have found helpful is Medical Marijuana (MMJ). It helps to moderate pain, but more importantly, some of the available strains really make a difference in allowing people with the disease to sleep through the night.

See, one of the problems with MJD is that the twitching, cramping, and pain in the hands, feet, and legs is such that it disrupts sleep. This is something that I noticed particularly in the last few months, as my symptoms started developing, and I have a long way to go before it becomes diagnosable dystonia. So of course, anything that might help me sleep better is of interest. Because the key to dealing with this disease, since there is no cure, is to manage the symptoms to the greatest degree possible. That will allow me to make the best use of my functional time each day, and get the most enjoyment out of living.

And if MMJ will allow me to do that, then I’m game. So I’ve started looking into it. The problem is that it’s damned hard to separate out the quack “MMJ can cure EVERYTHING!” stuff from real, rigorous research. Of course, the demonization of all forms of cannabis by our government over the last half century hasn’t helped. Since it is still a “Schedule I” drug as far as the federal government is concerned, there are real limitations on what kind of science can be conducted on medical applications, which just opens the door to all kinds of outlandish claims. I swear, it’s like the ‘Snake Oil’ era of patent medicine, or the insane hype that went along with radium and other radioactive quackery early last century.

There’s no rush, since I’m not going to see about getting a MMJ card (available here in Missouri) before I have a definite diagnosis, though just on the basis of my chronic pain alone I could qualify. And for the time being I can just rely on the meds I already have (opioids, OTC stuff, booze). But I have been trying to educate myself from what trustworthy sources actually are available. Which, to be quite honest, is enough to drive one to drink.

Ironic, eh?

Jim Downey