A Public Service Announcement for people who like people with movement disorders.

—We become more symptomatic as the day/evening wears on, or with stress, or heat, or just 'cause. We're not getting "worse" or "better" "these days."

—We don’t like being "noticed," a burden, or “taken care of.” It tends to make us shut-ins. We should get over it, and trust people more. We already know that, though.

—We look worse than we are, usually. Ask once, but don't feel awkward about “taxing us.” We'll say when.

—We speak in low, raspy voices and have odd pauses. So we become stoic, and selective about joining in. We're not withdrawn or morose or fetchy. We're realistic. Don’t know how to include us in banter? Here's how: just do. Missed our response? Say 'what?" as per usual. We can see you pretending to hear us.

—You know that awkward feeling of not knowing how to join in? Imagine trying it with half your breath and a mouthful of sand. In a natural way, make a little space for us in the conversation at least once. Ask us a question or sumpin'. Otherwise, grin back when we grin. Etc.

—See, we are still HERE. Our minds work at normal speed, and we're probably keeping up with everything you say and do. We don't want extraordinary attention or effort, just the artful 5% adjustment, and only if necessary. If what we say isn't funny or interesting, all the usual applies. We want NORMALCY.

—We love to listen to you. With PD and MovDis, we became better listeners, better at feeling and thinking about you. Every moment is work, but we are also more alive to each moment. It's not sad, what we are now. It's a gift.

9 Replies

  • gcorrell, you have said it as it truly is! Thank you!

  • —We become more symptomatic as the day/evening wears on, or with stress, or heat, or just 'cause. We're not getting "worse" or "better" "these days."

    Strangely I am the opposite. 7pm on the dot everything calms down. It's like my body runs out of energy to produce the symptoms.

  • From what I read, and from direct experience, it varies between MovDis persons, and over time for the same person, too. I experience what you describe, in some respects. My arm and leg movements get worse in the evening if I've had mental or emotional stress. They are better if I have exercised; usually, but not always.

    But my head movements, "droopiness," and mental acuity diminish almost every evening. I can overcome these, but at a cost.

  • How much exercise do you find you need to make a difference?

  • If I can walk a mile in a day, that works. Less than that, not so much

  • Do you really feel it's a gift to have PD? I'm grateful for many things, but if there were a cure for PD I'd take it in a New York minute!

  • I respect that we all have different experiences, symptoms, and adaptations. I'll say it this way: "If I could have this stop right now, I would give almost anything, too. But since I can't—and since the current state of the art for pills and procedures are at best problematic and at worst terrible in and of themselves—I accept and live with the changes in me. One of those changes is that it slowed me down, and made me quieter. Most of the time, I use this potential 'disconnect' to listen, to feel the moment. I find this is possible in unexpected ways."

    I try not to loathe my incessant movement and involuntary aspects, the lack of natural control i used to take for granted, the loss of athletic grace, the way I am misunderstood as mentally impaired. I fail at this at times. I get exhausted. I want to put my right arm and leg in a vice. I've learned to feel these things, then let them subside, in a half-assed but effective Buddhist manner. Fighting them as thoughts and feelings, makes it worse.

    But I hear you, jdc3. I certainly do.

  • I want to apologize for being unclear in the way I worded that post - I meant no disrespect at all. In fact I actually was feeling jealousy that I can't muster up that sort of radical acceptance - and respect and awe for you that you can. The Buddha say attach to nothing - I guess that includes my self pity & fear of the future. Good luck to us both!

  • no worries, jdc3. It's messy work, being human. :)

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