Communion Of Dreams


Machado-Joseph Disease: hands

This morning I’ve been experiencing a typical episode of one of symptoms of MJD (for me): hand weakness/spasm/pain. I’m writing about this to document the disease and to give people a sense of how odd it can be sometimes. At this point, the episodes I experience aren’t constant; they last for a few hours, then disappear for a day or three.

Now, normally I have very strong hands. Building on my basic physiology (large hands, good musculature), 30+ years of bookbinding have made my hands strong, as you would expect. But not this morning.

The first thing I noticed was a slight tingling was through my hands, extending into my forearms. Almost like they were ‘falling asleep’, or like I had held onto a vibrating machine like an orbital sander for too long.

Then there was a feeling of weakness. Like I had been handling bricks for hours, or using a heavy hammer to break blocks or beat metal. My hands were tired, though I hadn’t done any work with them. When I was making coffee, I was sincerely worried that I’d be able to hold onto the mug securely. Popping off the top of my Tramadol Rx pill bottle actually took effort.

Know how when a muscle (group) is particularly tired, it can develop a slight tremor or spasm? Like it has been over-worked and the nerve signals are getting wonky? Yeah, that’s also typical of these episodes. My hands don’t really shake like I have Parkinson’s or something. Rather, they just feel like if I demand anything much from them then they will spasm. The medical term usually applied to this is fasciculation, and is common in neuromuscular diseases like MJD. There’s an … uncertainty … or maybe an unreliability to using my hands. Motions aren’t fluid, graceful, confident. I question whether I am holding the coffee mug securely enough. My typing suffers (the number of corrections I’ve made while typing this is rather startling).

Actual pain isn’t too bad today. It’s more like an ache. But there is a memory of pain there. A hint of things to come. More than just muscle pain, but different than arthritis pain. Almost like the pain from a broken bone, partially healed. In some ways it sounds like peripheral neuropathy, though I’ve never had a diagnosis of that.

None of this is debilitating. I’ve been able to make breakfast. Get showered. Run an errand. Feed the cats. Get lunch. Even get a little bit of work done at my bench. It’s mostly just annoying. And it will likely pass in a few more hours.

But it is tiring and distracting.

I’m looking forward to seeing if there’s something we can do to help manage it, and the other symptoms.

Jim Downey


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