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.

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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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Have journaled about spasticity for about 2 weeks. Just knowing that I’m keeping track has made me more aware. Not ideal, but I’m looking for patterns. Found several. When I’m tired, or overdo exercise, I become spastic. If I don’t warm up but rush into exercise, I become spastic. If I think about being spastic, that can make me spastic.

But starting physical therapy (haven’t done for about 10 months) has been very helpful. Another place to observe walking (and yes, I am definitely dragging right foot less - yay! Another plus for infusion treatment.) Focus is on stamina, walking, spasticity. Manipulation of spastic leg + exercise strategies have considerably reduced spasticity. I will keep watching, but now I have tools (non-drug) so need for journaling is less, because spasticity is less.

So change direction, and focus more on urinary retention - tease out exactly what the problem is and why I think that so can address it. Not entirely happy with problem statement, but I can muddle through with the best of them.

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It’s interesting to hear how “just journaling” can lend so much insight. I think @skjonas has made this point – maybe a lesson for others that it’s really valuable to just get started trying to record something. That alone can result in a lot of learning.

Hi @Francesblo! I was curious how stuff has been going. It sounded like you were curious about something that’s hard to define… I think it’s interesting to hear about tracking challenges. Sometimes people have ideas.

And even if one decides something was too hard to measure, there’s a lesson in it. In our panel chat on Monday, one reflection we had was that things that don’t have a clear “event” (e.g. pain level, mood) are really hard to measure.

P.S. I’m planning to share the video I just linked in a newsletter tomorrow & elsewhere! You might find it interesting. :slight_smile: