Communion Of Dreams


Machado-Joseph Disease: Telling.

4/11

Got together with my sister and her husband yesterday. After the usual catching-up (we only see each other in person a few times a year, since we live a couple hours apart), I told them about my conclusion that I have MJD. Since she has managed the disease for 15+ years, they know full well what the implications of my conclusion are. But my sister and I are a lot alike, and I knew that she would step back, digest the information, then engage with it rationally.

She did exactly that. Then the four of us (my wife Martha was with me) had a good conversation about the disease, what symptoms I had been experiencing, and where things go from here. Both my sister and brother-in-law were able to provide some very good suggestions and observations, offering advice and support based on their lived experience that will be invaluable to me and Martha going forward.

* * *

This morning I started letting close friends know about my conclusions, though email and Facebook personal messages. While ideally I would have preferred to tell them in person, that wasn’t practical. And besides, presenting the information in writing allowed me to shape the impact it would have (I am, after all, a fairly competent writer). This is the template I used, personalizing it some for different individuals:

Hey —.

You may have noticed that recently I’ve talked about my pain levels (particularly in my hands) being more problematic. Well, there’s a reason for that, which will become something I’ll be discussing publicly in the future: it seems I have the onset of Machado Joseph Disease. But I wanted to let my close friends know before I said anything for public consumption.

This is so far my own assessment, but I’m about 95% confident in it based on symptoms over the last six months or so, combined with family history. I’ve got an appt at the end of May with a local MU neurologist who has experience with ataxias, and will get the genetic test and full evaluation then. But there’s almost no doubt that I have it, probably with the initial onset about 3-4 years ago.

Believe it or not, I’m OK with this knowledge. I’ve always known that it was a possibility, and basically I consider myself lucky that it waited to show up until I was ~60. I know what to expect, the medical knowledge of it is much better than things were 15 years ago when my sister had onset, and her experience with it has taught her some coping skills and treatment options that will help me. It’s not good news, but the later the disease manifests, the slower it usually progresses. In many ways, this won’t be that much different than what most people experience with normal aging — in fact, I had ignored the signs of it for so long largely because I just thought it WAS normal aging.

So, there we go. Don’t feel obligated to get philosophical in responding; I wouldn’t have told you now if I didn’t know that you already care and “are there for me” in friendship.

Take care.

It’s interesting to me that the process of composing that message helped to clarify my own thinking and perspective, just as these blog entries have done. At heart, I’m a writer. And writing requires clear vision of the subject at hand, pushing me to analyze not just the facts, but also my emotional reaction to those facts.

* * *

4/12-13

Responses to the above have been interesting, and pretty much what I was shooting for. My friends/family have been supportive but not maudlin, mostly just acknowledging the news and wishing me good luck.

Of course, the text I sent out is a “best case” take on the possible paths this journey can take from here. I figured it was better to give people a heads-up, to let them start to adjust to this news. What I find out when I get the genetic test results back, combined with the assessment from the neurologist, will give me a better idea of what to actually expect. But I didn’t see the point in going more negative with my portrayal, since it is possible that will not be the case. No reason to make people more concerned than necessary at this juncture. If I need to share bad news later, I’ll deal with that, then.

Besides, I have enough to be worried about myself, without having to also deal with the worries of others. Because while I “am at peace with this news”, I am somewhat concerned by the seeming speed of the progression. But I am also aware that said speed is perceptual — going from perceiving no evidence of MJD to what I now perceive is different from the reality that the disease likely began three or four years ago, and hence I am experiencing it at this stage of progress. In other words, I’m likely three to four years into this, but just now aware of that.

For example: now that I am aware of what is going on, I recognize that I have near-constant pain in my hands and feet, and frequent pain in my lower legs. Previously, I would have just noted the pain, attributed it to other things, and then tuned it out to whatever degree possible. Because in my mind, in my perception, it “wasn’t a problem”. Now that it IS a problem, I’m paying more attention to it.

This isn’t a bad thing, per se. It’s important that I catalog the reality of what I am experiencing so that I can give an accurate assessment to the neurologist. So there’s that. It’s also important to pay attention to pain, because it is instructive, at a very basic level of survival. Don’t think so? Then just do a search for reports of what happens to people who for some reason are incapable of feeling pain. Bottom line: it ain’t pretty.

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.

I’ve also noticed an uptick in the amount of alcohol I’m drinking. Self-medicating, in other words. Again, this does tend to cycle, with some times of the year it being a little higher (2-3 double Scotches in the evening) and other times lower (just 1 double, occasionally 2). Years ago I stopped worrying about it, after discussing it with my doctor, because she observed that it was probably healthier for me than increasing my use of even mild opioids (the Tramadol and codeine), so long as I didn’t develop an alcohol problem.

But having both things happen simultaneously is an indication that my body has been seeking more relief from pain. Again, this does happen sometimes, if I undertake some particularly aggressive exercise project. But I haven’t. Instead, it’s probably because I’ve been more aware of the pain related to MJD.

Jim Downey


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[…] * As noted a month or so ago: […]

Pingback by Machado-Joseph Disease: Livin’ outside the norms. | Communion Of Dreams

[…] 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: […]

Pingback by Machado-Joseph Disease: Management trainee. | Communion Of Dreams




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