ONLINE Video Channel for Dystonia and other disorders.

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Permalink Reply by Robin Wood on January 4, 2009 at 10:14am

I Am Dystonia
produced, compiled and edited by: Me

I created this video both for Dystonia Awarenss Week 2008 as well as a promo for the Myspace Dystonia Support Group. The video was a group effort, portions from dystonia poems and actual written words from those in the Myspace Dystonia Support Group were used thru out the video.


http://www.youtube.com/watch?v=wdyavJG3Xd8

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Permalink Reply by marie on January 4, 2009 at 5:28pm

your video is amazing.im hoping to see some videoes of movements happening.up til recently iwas led to believe there was no one like me.thanks to you and everyone out ther helping with this project.love,marie

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Permalink Reply by beka on January 10, 2009 at 6:00am

Marie - I do believe an entire world has opened up for you here. No, you are certainly not alone.
beka

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Permalink Reply by Robin Wood on January 4, 2009 at 5:20pm

Here is a great video that catches a Clonic Spasm in action. Watch as he crosses his arms, you'll be able to see the muscle contract, relax, contract and then relax.

ketan's dystonia nov 29 2008


http://www.youtube.com/watch?v=-g0tDeIdNjY

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Permalink Reply by Robin Wood on January 4, 2009 at 5:26pm

Does any one know what muscle(s) are involved in his upper arm ???

Is it the spasm in the upper arm that is making the lower arm move about or is he also experiencing a spasm there too ??

His video description says: effect of dystonia on right hand & left leg no mention of his upper arm, but yet I can clearly see one there ... anybody else see it ??? Look familiar ???

Robin

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Permalink Reply by Robin Wood on January 4, 2009 at 5:49pm

Everybody meet Jason and get ready to smile for if you don't already know Jason, he's awesome and totally rates in my book. Jason has a severe generalized dystonia. In this video Jason's right arm/shoulder is in a Tonic Spasm which is a continuous and/or sustained involuntary contraction: It is also called entasia

Dystonia


http://www.youtube.com/watch?v=1MQtaMENDV0

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Permalink Reply by Robin Wood on January 4, 2009 at 6:12pm

So here's the way I view the two types of spasms: When I think Clonic Spasm I think Clowns, the make you do goofy movements as if you are clowning around. They make people laugh. And Tonic Spasms are all about the Twisting Tightening Rule. There's no clowning around going on here, infact a Tonic Spasm is a complete opposite of a Clonic Spasm. Tonic Spasms mean business, they are cruel and inhumane in nature, the laughter turns to pain.

This past summer I had the same spasm start that Jason has in this video in the shoulder/arm. I don't think Jason's releases very much. This is not a fun group of muscles to have spasm.

Robin

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Permalink Reply by BDrake on January 5, 2009 at 1:39pm

Dystonia Muscle Twitch



http://www.youtube.com/watch?v=lQQsXIZaA0c

Dystonia Tremor

http://www.youtube.com/watch?v=14rJO26aePY

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Permalink Reply by Rosemary on January 6, 2009 at 8:35pm

A word of caution. Dystonia manifests in various ways. If you do not see yourself in these videos, don't be confused. Rely on your doc and EMG for diagnosis.

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Permalink Reply by robert on January 8, 2009 at 7:51am

As always it depends on your doctor, mine hadn't a clue about dystonia and I had to figure it out for myself.
Dystonia does manifest itself in many ways because it can be a symptom rather than a disease. If your doctor is confused find another, preferably a movement disorder specialist. Even then some will tell you that it is all in your head. The truth is that dystonia is not understood as yet by medical science and all the treatments are just band aids to address the symptoms. In the meantime folks must be proactive and these videos are probably the best way to illustrate various dystonia related symptoms that some will identify and say: that's me!

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Permalink Reply by Rosemary on January 8, 2009 at 1:03pm

Yes, it is important to have a good, knowledgeable doc such a Movement Disorder Specialist, or- as in my case initially- a doc of Physical Medicine and Rehab. Most others- GP, Pain Management, Neurosurgeon- are clueless. Personally, I wish they would come up with a different name for "movement disorder" because you can have Dystonia without overt movement (as in a sustained contraction). Finally, I thought Dystonia is a symptom (as in Parkinson's etc...), but that it is also its own disorder (as in Cervical, Cranial, Generalized etc..)

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Permalink Reply by BDrake on April 24, 2009 at 9:05am

Mine is "sustained contractions" and also tremor and occasional tics...mainly sustained though

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