ONLINE Video Channel for Dystonia and other disorders.
Hi All-
Upon the suggestion of two members, I have begun this post so that it becomes the main viable thread and posting area for the New Online Video Channel for Dystonia and other disorders. One location to view and comment and post your thoughts on your thoughts about each Video Link.
I urge that everyone scan and post their own Video Links as a start- to begin the process. I will add videos Monday once I get out of the ICU.
One more nite to go...
beka
Upon the suggestion of two members, I have begun this post so that it becomes the main viable thread and posting area for the New Online Video Channel for Dystonia and other disorders. One location to view and comment and post your thoughts on your thoughts about each Video Link.
I urge that everyone scan and post their own Video Links as a start- to begin the process. I will add videos Monday once I get out of the ICU.
One more nite to go...
beka
Tags: central, dystonia, facebook, home, links, location, made, my, ning, space
Replies to This Discussion
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Permalink Reply by Robin Wood on -
Stiff - Persons Syndrome with Myoclonus
Description: This is a neuromuscular illness where the neurotransmitters are affected. It is also called "jerky Stiff-person syndrome"
http://www.youtube.com/watch?v=DOc4aQXTEME
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Permalink Reply by Robin Wood on
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Parkinson's plus Dystonia Spasms
Description: These spasms have emerged as part of my condition: Parkinson's plus Dystonia. They are very painful and distressing and can last hours, Is anyone out there experiencing this?
http://www.youtube.com/watch?v=gmtuMbn9vJs
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Permalink Reply by Robin Wood on
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PARKINSONS IN THE A.M.
Description: WHAT ITS LIKE FOR ME THIS A.M. IN MY FIGHT WITH PD.
http://www.youtube.com/watch?v=jiqfDP69jxU
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Permalink Reply by Jenn on
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What a great idea! I have not done a video because most of the time my dystonia is not visible.. which in a sense I'm thankful for.. but at times Im frustrated because its hard too see what I'm going through. Most people see my limp, and assume I hurt my knee. When my arm has been contorted they thought I hurt my arm.. Even my tics are mistaken as chills. ..
On a side note, a friend of mine, Gale, (Beka you remember her right?) is doing a documentary on dystonia and is looking for people --unlike myself -- who actually have visual symptoms. I did a blog on here with all of the information. You can be kept anonymous if you like.. Trust me, we all know how hard it is to put yourself out there!
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Permalink Reply by Lene on -
I was once again looking at all these utube videos and I need someone to answer a question for me. I have cervical dystonia and for about 4 yrs..Different things are going on with me now that I decided to check out.
Should I be having the following with cervical dystonia? My hands now both shake and I take a medication for that. That happened very slowly over a period of time. Now I am experiencing ankle and foot spasms that are much like the ones in the video. My foot curls to one side and the pain originates from the ankle I think. I have had to get out of bed and walk on the foot to make it stop. This has just been sporadic & I thought it was I was lacking some food of some sort. However, I am eating good food, fruits, veg,protein, yogurt and we buy whole grain for bread. This ankle thing is so painful i really moan and make noises. The other night I had the weirdest experience with both my hands, It was around 3am I was eating an apple and my hand went into and awful movement twisted to the side. I rubbed it and then the other started doing the same thing. Can u tell me if anyone knows if this is also dystonia before I go spend more money on this damn disorder. I always thought if you had a focal disorder and got it late in life ....I was 50 that was it and I would not have to tend to any other things..My hands for instance...my neuro said sometimes it happens but most of the time in a focal dystonia it would not. She said only about 30% get tremor of the head with focal dystonias and I have that.
Please give me your honest thinking on this...Lene
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Permalink Reply by beka on -
Hi Lene - regardless of what the books say, there is sooo much variance within the subsets of dystonia, that it can invlove multiple other focal sites.. regardless of age or anything else...
That is an honest statement...
In medicine there is always a patient who steps out of the text book mold...
beka
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Permalink Reply by beka on
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Of course I know Gale...
Really, ALL- a great opportunity to get dystonia out there .. with everyone's participation, it can be done..
beka
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Permalink Reply by beka on
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New Videos from Tom in Florida !!
I've posted a couple more YouTube videos you might want to check out. One shows my different reactions sitting in different chairs -
http://www.youtube.com/watch?v=cwdmdekZ8Vs
and one shows my reaction to fluorescent and ultraviolet lights -
http://www.youtube.com/watch?v=rO6iqabb_ss
Tom/
posted by Beka
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Permalink Reply by Thorns on -
This is very interesting, lets see if dystonia is partly environment,specially materials, it's like people living around overhead electrical towers get more brain cancer. I have different chairs I have found to make me very uncomfortable over the years but just felt it was the way I had to sit in them, now I'm going to be more aware to see if it's the materials. Thorns
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Permalink Reply by BDrake on -
Different chairs affect me too but I'm like you Thorns, I always thought it was the way I had to sit. The pews at church and those cold metal folding chairs at my daughters gymnastics will leave me dystonic every time!
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