Study of my spasticity (from myelitis)

I want to keep track of episodes of spasticity (I become so stiff in the legs that I can barely move). I don’t have a one button, so I will initially journal and look for patterns. I’m following the work of @SaraR who told me about Open Humans. (Thanks, Sara!)

I’m going to wander through the forums for ideas, too. Because asking the right questions helps identify patterns. I think the questions I’m asking are too obvious: relation to fatigue? relation to exercise? Not wrong exactly, but not nuanced enough.


Do you have ideas you might use a one-button for?

I have one that isn’t working that I should try to repair. I’m motivated to do that if there’s someone that would like to use it – not sure where you are (I’m in California) but I’m more motivated to attempt repair if I might mail it to someone that’s likely to use it. :slight_smile: (I suspect it never did work; there’s something unsoldered that I need to try to solder, and that’s not something I’m familiar with – but I bought the stuff and can ask my spouse for help.)

I have a couple of ideas - monitoring when my small motor skills get worse, because I can’t see any pattern; monitoring when urinary retention gets worse; monitoring when spasticity gets worse (I’ve been journaling it, which is useful, but I’m not catching everything) I figure that I can monitor each for a few weeks to see what the patterns are; there are always new things I wish I could monitor.

I think that they are sending me a one-button, but if it doesn’t come soon, I may take you up on your offer. I will let you know.

In the meantime, this is really a great idea. Looking forward to seeing how it develops (hope to come to the webinar).

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