ONLINE Video Channel for Dystonia and other disorders.

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Permalink Reply by Trudy on January 11, 2009 at 1:17pm

I have no words to express how this visible portal of information has echoed within me! The ability to 'see' what I am experiencing manifest in other individuals gave me the much needed validation. Especially the video of Jason really hit home. Although Jason's symptoms are much more severe than mine are currently, I still found comfort knowing -- seeing -- I am not alone. I have seen previous videos showing other symptoms similar to mine but none showing what has recently become one of the hardest for me to accept.

This forum and all the members willing to be vulnerable enough to put themselves out there...I thank you.

Trudy

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Permalink Reply by Robin Wood on January 13, 2009 at 5:18am

Facial Dystonia

Description: Short clip of muscle spasms in my face, cant open my eyes and mouth puckers. It is painful! Lately the 'spasm' moves all over my face and into my neck. Which causes my neck to turn to the side at a incrredible angle and it feels like my neck is tying to "twist off".



http://www.youtube.com/watch?v=N6DvZiUuVgk

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Permalink Reply by Robin Wood on January 13, 2009 at 5:39am

Tonic, Clonic, Dystonic
by: Tictionary

Description: Sounds like an advert for floor cleaner! It's actually a video with descriptions and demonstrations of tonic, clonic and dystonic motor tics. This is not a comedy. If you are looking for something to laugh at, please go elsewhere. If you have any (polite, respectful, genuine, mature) questions, please go ahead and ask and I'll do my best to try and answer them for you :)


http://www.youtube.com/watch?v=tVet0Q_1uuQ

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Permalink Reply by Robin Wood on January 13, 2009 at 5:54am

Trumpetist and Hand Dystonia
by: jfabrava

Description: Abnormal wrist movement, abnormal,inadequate and slow movements of the finguers. As retraining therapy goes on progress becomes a fact.


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

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Permalink Reply by Robin Wood on January 13, 2009 at 5:59am

Violinist and Focal Dystonia

Description: Although the images of musicians suffering from this movement disorder are all of them dramatic, this case was extremely severe given that at the beginning of the rehabilitation treatment the involuntary movements had spread beyond the violin practice affecting other contexts of this musician´s life as simply writing on the computer or taking a glass of water, etc....
However as all of you can see after a year of very hard work the musician recovered his capacity to play violin. It is impossible to put into words the enormous, gigant work this men carried out to overcome the malady. He was extremely corageous, disciplined....., another example of a great man that never threw the towel. Not only he agreed to make this images public but he wanted to encourage many musicians who are undergoing the disorder, which in his view is much more important than the privacy of the images.


http://www.youtube.com/watch?v=17oRdtXKcm0

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Permalink Reply by Robin Wood on January 13, 2009 at 6:02am

Trumpetist and Embouchure Dystonia

Description: The embouchure shows abnormal functioning of the muscles, after rehabilitation therapy it comes back to normal


http://www.youtube.com/watch?v=FQLoqakF58M

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Permalink Reply by beka on January 18, 2009 at 1:21am

I applaud you, Robin for making this Online channel so Visible. You are simply amazing... How do you uplad the videos to the forum rather than just adding the link ???? If we could create a channel of multiple different forms of dystonia, someone may catch their symptoms online here in one area !!

beka

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Permalink Reply by Rosemary on January 18, 2009 at 12:56pm

AGAIN, I THINK IT IS IMPORTANT THAT SOME DISCLOSURE/NOTE BE INCLUDED ON THE ONLINE CHANNEL THAT DYSTONIA MANIFESTS BROADLY, AND THAT THE VIDEOS PRESENTED ARE ONLY TO SHOW HOW SOME PEOPLE DISPLAY DYSTONIA.

I THINK ONE OF THE REASONS MY DYSTONIA WAS DIAGNOSED SO LATE IS BECAUSE IT IS "ATYPICAL."

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Permalink Reply by Robin Wood on January 19, 2009 at 4:35am

Beka,

If you are uploading from Utube, to the right of the video you will see "URL" and "Embed", I post both just because. If you right click on the box next to the "Embed" it will highlight it, cut and copy this (control C ) and then paste it (control V ) into the reply box here on wego, this will embed the video for all to see once you hit "add reply". You won't see the actual video untill you hit "add reply".

If anybody needs help, just let me know

Robin

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Permalink Reply by Robin Wood on January 29, 2009 at 10:41pm

Beka posted a link to this video in another post ... thought I'd post the actual video here as well :)

Dystonia and Parkinson's PSA
Description: Christian Hoff, Tony Award Winner from Jersey Boys, teams up with The Bachmann-Strauss Foundation to speak out about a movement disorder known as Dystonia. Dystonia is a neurological muscle disorder that causes uncontrollable, painful spasms in one or more parts of the body and is not widely known. Dystonia affects more than 500,000 people in North America which is more than muscular dystrophy, Huntington's disease and Lou Gehrig's disease combined.

Innovative research is currently being conducted to lessen the painful effects of Dystonia, but more needs to be done. Getting more answers about Dystonia can possibly help uncover more about other movement disorders such Parkinson's Disease.

To learn more about Dystonia and how you can help go to http://www.dystonia-parkinsons.org/



http://www.youtube.com/watch?v=FCrzZ7DF9mc

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Permalink Reply by Robin Wood on January 29, 2009 at 11:15pm

This next set of 4 videos are of our member Alison, aka RSD and Dystonia Teen

A little about Alison:

I suffer from CRPS (also known as Reflex Sympathetic Dystrophy) in my left leg and right arm. I first developed it when I was 12 years old after I fell down some steps and sprained my left ankle (I am now 13). About an hour after I sprained my ankle, my leg started to begin to rotate out to the side. Knowing that something wasn't right, my mum took me to the hospital, where they x-rayed my leg and said that nothing was broken, much to our surprise. It took 4 long months to finally be diagnosed with RSD. When I was initially diagnosed, my neurologist and Pain Management Doctor noticed straight away that I had Dystonia. To read more about Alison click here ... Complex Regional Pain Syndrome and Dystonia

Movement Disorders in RSD / CRPS
Description: Video showing my 13 year old daughter who has had RSD for 13 months and has developed movement disorders to the leg and toes


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

RSD / CRPS Movement Disorders and Tremors
Description: Video shows tremors in the leg of a 13 year old girl with CRPS / RSD
Spasms increase in alplitude towards bedtime


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

Physio Programme for CRPS Patients
Description: Video showing 13 year old girl unable to weight-bear or walk for 1 year after completion of week 1 of a 3 week PT Programme at Great Ormond Street Hospital, London


http://www.youtube.com/watch?v=pFtVIiNAFO8

CRPS Physiotherapy Programme at GOSH, London
Description: Video showing progress made after three weeks intensive physiotherapy at Great Ormond Street Hospital, London


http://www.youtube.com/watch?v=KZ6m4lloyEc

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Permalink Reply by Robin Wood on January 29, 2009 at 11:22pm

Antipsychotic Medication Permanent Damage from Psych Drugs
Description: Antipsychotic medications or neuroleptic drugs can cause permanent damage to the central nervous system resulting in a movement disorder known as Tardive Dyskinesia.

These psychiatric drugs often prescribed for schizophrenia, bipolar and other psychiatric labels can damage the brain and CNS and cause permanent movement disorders.

Commons drugs in this class include drugs like Zyprexa, Risperdal, Seroquel, Geodon, Abilify, Thorazine, and Haldol.


http://www.youtube.com/watch?v=6mXO6khqGKE

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