Sep 11, 2020
September is Dystonia Awareness Month
Hi! I made this video to raise awareness of dystonia during Dystonia Awareness Month! And, specifically, to mention this online event.
Hi, everyone. I’m wearing my Dystonia … I guess it’s the Dystonia Virtual Zoo Day shirt. I’m reading it backwards. So yeah, it’s an event that’s coming up on Saturday [tomorrow] and it’s not like I’m personally involved or anything, but I’m involved to the point of having given, and I’m wearing a T-shirt and I wanted to make people aware of dystonia. So here I am reminding you that there’s this condition called dystonia and it’s a movement disorder. I suffer from it. And, well, I have it. I suffer from it also, but that is neither here nor there. Let’s see, what else? What can I say about this? People don’t really have a good grip on how to cure this thing. It isn’t so much a cure that people seek these days so much as a way of coping.
And my best way of coping with the disorder has been to seek out solutions through medical professionals, through online searching, through every means I can come up with, and I fall short a lot or I’ll see something I’ll think, hmm, that might help me. And a lot of it comes down to mental attitude and the willingness to try things that you think will not work that may work if you keep at it. And I just picked up a book recently. It was called … Oh my gosh. I was just looking at it. I can’t believe this. I’ll talk about it later after I think of the title, [which turned out to be Intertwined. How to Induce Neuroplasticity.] But the point is I just picked up a book recently that addressed exactly what looked like, the kind of dystonia that I have, which I had never seen written about anywhere else, which is one that affects my left side.
And I just want to say that I’m trying to do things now without putting things on my hand, in an attempt to see if that will help improve the movement in my fingers, because right now all they want to do is go like this. [It’s nearly impossible to demonstrate, but imagine your fingers being simultaneously twisted in opposite directions all the time.] But there’s a part of me that I know that can achieve a balance, but I don’t know how. It’s so complicated. The nervous situation is so complicated that I can’t even really explain this except to say that the muscles that are in opposition to each other, that work normally together do not work together normally. They do not work well together, like they’re supposed to. So that’s what it comes down to. And it’s a struggle every single day. But as I’ve said before, part of what keeps me going is the power of habit. And I can’t stress that enough.
I mean, and you also have to kind of, have a kind of faith that things will somehow work out or just say, well, I have this, and I just have to deal with it. So that’s all I have to say about dystonia. I just want to make people aware of it. I want to make people aware that if you’re suffering from that or something like it, hang in there because you never know what’s going to work. What might come along, what could make your life better? Don’t give up. And allow yourself some slack, just allow yourself time off when you need it. You deserve that. We all do. I’m saying this on Labor Day, when I’m supposed to be relaxing, but this is actually a way I’d rather spend my time right at the moment. So I hope that things are going well for you, that you’re not being negatively affected by the pandemic and that other than what everybody is going through and that you’ll come back for more of my videos. Thanks. And I’ll talk to you later.
PS: The event is tomorrow, Saturday, Sept. 12, 2020! 🙂
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