dystonias

“I have a neurological disorder called Spasmodic Dysphonia. It is in the dystonia family and effects the voice.

Due to this condition I can no longer sing.

I can act, write, teach and more.

But my time as a professional singer for the stage has completed its run. I am overjoyed by all that has been learned and accomplished in these 24 years in musical theatre.“

Actor Rodney Hicks Opens Up About Come From Away Departure

To the JSE Community:

My name is Jessie, and I’m hoping you can help me bring a condition and charity to the attention of @therealjacksepticeye

This is my left hand (which I call Gimpy). I’m not throwing a gang sign; that’s my hand’s natural resting position now. It’s caused by a neurological condition called Dystonia. Basically, it twists you into a human pretzel. I’m lucky that only my left side is affected, so I can still walk (with a cane) and create art (though when I do end up in a wheelchair, I’m getting a “Speed is Key!” decal or stencil for the back of it.)

Simply, Dystonia sucks. It’s debilitating and painful. It’s the 3rd most common motor disorder but it’s relatively unheard of, they don’t even know what causes it, and there are very few treatments, and most aren’t very effective. There’s so little research being done, and that’s where I hope you guys will come in. If we can get the condition on Jack’s radar, maybe he’ll take on a charity effort and we can raise research funds that are so desperately needed. I’m really not looking forward to spending the rest of my life slowly and painfully twisting into a human pretzel, and I really hope you guys will help me out here! ❤ Please reblog, and consider suggesting Dystonia to Jack when he asks for charity suggestions. This could lead to a huge change in my quality of life down the road, and that would mean the world to me and the 250,000 people affected (just in the US alone!) by this shitty condition. Thanks for reading guys!

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lucillesarmy  ||  last but the absolute furthest from least is this man. i met norman this past Saturday and i can wholeheartedly say that the two chances i had to meet him were two of the greatest moments of my life. 

First i got an autograph from Norman. i waited in line for about 3 ½ hours in his line and let me tell you, it was worth every second. When it was my turn, i walked up to norman and said hi (very excited as always lol) and he said “come here cutie pie” and pulled me into a hug. my mom was right behind me and he turned to her and said “gimme a hug dammit” which made us both laugh. my mom got all teary eyed to see how happy i was. he then grabbed my hand and held it the whole time that i was at the table. 

i told norman that i wanted to do something for him (which he immediately brushed off saying that i didn’t have to which was sweet) so i told him how i donated to the dystonia parkinson’s foundation (a foundation that means a lot to norman) he just looked at me in awe and said “wow, what an awesome girl you are” then the three of us talked about season 8 and how we loved carol and daryl’s friendship. 

later at my photo op, i walked into the room and he saw me and said “hey sweetheart” and i asked to have a hug and he said “of course, come here” they took the picture, we said thank you and i left. that was the end of my experiences with norman for the weekend but i cannot explain how kind, gentle, and sincere this man is. he takes his time with each and every fan, values them, and makes them feel so so special. if you ever get the chance to meet this lovely human being, do it without hesitation because he will not let you down. 

i cannot think of norman without having the biggest smile on my face or crying from happiness. i hope i am blessed enough to meet him again someday and until then, i have this beautiful memories that i will cherish forever. thank you @bigbaldhead​  ❤️ and thank you @walkrstalkrcon

Decided to make @torque-witch‘s Spoonie Rice bag.  I made mine more rectangular, and I left the pocket blank instead of embroidering the sigil (mostly because I suck at hand embroidering).  When I use it I will put my own sigils and sachets in the pocket, along with healing crystals.  This was a great idea though and I highly recommend it, whether you have a chronic illness or not.  I myself have dystonia, and sometimes after episodes, I will have lots of muscle pain, so this is a great way to give myself some pain relief, with a little magickal kick to it!

I’ve been waiting for spoonie strong selfie Saturday.
This is me as of late. I’m disheveled because I’m too weak and in too much pain to shower. I have to spend a lot of time resting. I’ve gained quite a bit of weight from a lot of courses of prednisone the past couple months. My neck is always twisted to the side and I may have dystonia. I have a very painful neuroma in my foot which I’m waiting to see if the cortisone treatments will work. My whole body is constantly weak and as you can see, my face droops a bit.
I’m worn out from life. I just celebrated my 21st birthday last friday, which was good, but this past week has been pretty awful.
Just trying to get by and still looking for answers.

anonymous asked:

i got two questions that i desire to know from you because you seem to have a handle of Dio's personality: what kind of dystonia would he create if he ruled the world, if he won in Part I or Part III? would young vampire Dio's rule be different from this older and wiser part III counterpart?

Kind of tough to answer since unlike a lot of the other Jojo villains (Pucci, Valentine, Kars to an extent), Dio isn’t motivated by reshaping the world. He’s a selfish villain driven by his desire to expand his own power and transcend all limits. So the shape of the world that would be left in his wake is more of an afterthought to him. 

(And even though Pucci was enacting Dio’s formula for “heaven,” to me it felt like the Heaven that Pucci arrived at in Stone Ocean - with everyone knowing their own fates in advance - was less Dio’s vision than Pucci’s own … and I liked how EoH reframed the Heaven thing so that it meant that Dio got resurrected as a god, because honestly that’s so much closer to Dio’s own idea of heaven).

Araki’s talked about how Dio’s way of living is actually correct from the perspective of the natural world, it’s like survival of the fittest where the weak get eaten by the strong. So maybe factor that in and also look at what he had going on at Windknight Lots for cues to what his dystopia would look like.

I actually think Pt.1 Dio’s got a lot in common with his Pt.3 self, Pt.3 Dio is maybe more subtle than Pt.1 who enjoys exploring the more grotesque aspects to his power. Some of that comes down to Pt.3 being used to having those powers while Pt.1’s still having a good time figuring out how to use them.  So Pt.3 Dio’s world would be just as bleak for the rest of humanity but maybe not as openly horrific.

anonymous asked:

i just read your post about all the possibilities and causes of the salem witch trials like poisoning and acting and all that, but one thing that always gets me is all the people who saw and swore that the bewitched were contorting and bending their joints and bodies in ways that are impossible for someone to do without breaking bones, if they'd be able to move in those ways at all. i was curious to know if you had any theory about that part?

This is actually very common in cases of hysteria! The body can do some very bizarre things when it’s under extreme stress. Back then they called it witchcraft, now it’s hysteria or “conversion disorder”, basically when your body is doing something that seems like it would stem from a neurological problem, but there’s actually nothing physically wrong with you - it’s psychosomatic. Check out this page on conversion disorder, and you’ll notice almost all of the most common symptoms - paralysis, non-epileptic seizures, unresponsiveness, uncommon movements, loss of speech, sight, and hearing - were all present during the witch trials. 

One of the most terrifying and well-known symptom of hysteria is something resembling dystonia, where your muscles involuntarily spasm and contort your body. Remember back a few years ago that woman who claimed that a flu shot made her unable to walk unless she ran backwards? That’s (pseudo) dystonia. And when you’re very truthfully contorting yourself while shrieking about the devil in a room full of terrified people, you can imagine how it would get exaggerated even more in the retelling.

It’s entirely possible that some of the people involved were faking it, secretly double-jointed, etc, but probably not all. These types of mental things tend to spread, especially among high-strung pubescent people.

There’s a great 19th century French book, Etudes cliniques sur l'hystéro-épilepsie, ou grande hystérie, which I haven’t read in English, but gives hundreds of illustrations and photographs of this phenomenon:

And of course for some people it’s a real neurological disorder that is permanent. Here’s a video of an affected modern person (warning: this is both terrifying and sad):

motor disorder gothic (aka "the motor mash")

You try to remove the lid. It will not come off. You pull, and you feel your fist collide with your orbital bone. There is already a bruise there.

That chair looks comfortable, but beware, for it is a temperamental beast. It will either swallow you up or eject you altogether, for that is the nature of its kind.

The doorway looms in front of you. It has ensnared you before, but not today. You have positioned yourself in such a way. You step forward with sureness, but somehow, the doorway clips you. It always clips you.

Your hands must be watched with a steady vigilance. They attack you far too often. They tremble and tremor, and throw your belongings if you are not careful. You suspect they may be plotting against you.

Scientists use magnetic fields to remotely stimulate brain -- and control body movements

The minimally invasive technique could lead to advances in mapping the brain and treating neurological disease

Scientists have used magnetism to activate tiny groups of cells in the brain, inducing bodily movements that include running, rotating and losing control of the extremities – an achievement that could lead to advances in studying and treating neurological disease.

The technique researchers developed is called magneto-thermal stimulation. It gives neuroscientists a powerful new tool: a remote, minimally invasive way to trigger activity deep inside the brain, turning specific cells on and off to study how these changes affect physiology.

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Wednesday, when I picked Freddie up from nursery..


his key worker gave me a laminated sheet of three photos she wanted to show me of his day. When I glanced at the photos I was surprised to see a little girl sitting with Freddie in two of them, one of which she was cuddling him. I asked who it was as I didn’t recognise her… until I looked closer and saw she was wearing a Disney princess dress. The dress rang a bell as I saw her that morning. I only saw her because I turned to look at who had made Freddie’s face light up so much and there stood this little girl in her princess dress. After I dropped him off I spoke with James and told him about the little girl Freddie was clearly fond of.

You see, having a none verbal child means I don’t know who Freddie is fond of, who he’s friends with, or who he plays with. He can’t come home and tell me about his day or who he sat next to at lunch. I know no names other than the ones I’ve picked up being there. On top of that he has one-to-care, so his key worker isn’t also responsible for another child or two so it’s not like I’m aware of children he would interact with. I know he loves nursery. I see his face when we arrive. I know he adores his key workers as I see the way he looks at them. I’ve even witnessed children talk to him, say hello when he arrives. It’s not the same though, it doesn’t compare to you’re child being able to tell you what they did and who with.

Seeing these photos made me emotional. It was lovely to see someone Freddie is friends with and them interacting. Then I knew why he smiled so much when he saw her - he was saying hello. It was an insight into his day, and it was extremely reassuring. He does have friends, they do play with him and they do like him. That’s all any Mum wants, especially a Mum of a child that is socially very different, for them to be okay and have friends.

I‘m Sorry

I have to apologize for being away all this time. I’ve been very busy with work and also being sick all the time. I’ve had trouble walking and stuff. There might be a small chance there’s something on my spine. I had it a while back, and it went away, but it feels like it might be back.

Also my vegetative dystonia has been acting up a lot more, so I’m sorry for not posting. I’ve just not been able. But I’ll try to post as many times as I psychically can.

Originally posted by wonderlandgirlforever