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Anybody know someone with Dystonia?

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Anybody know someone with Dystonia?

Old 09-12-2015, 01:58 PM
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Default Anybody know someone with Dystonia?

Just wondering.
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Old 09-12-2015, 04:08 PM
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Never heard of her.
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Old 09-12-2015, 05:06 PM
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Yes why?
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Old 09-12-2015, 05:47 PM
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Michael J Fox has it
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Old 09-12-2015, 06:34 PM
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Please tell us what dystonia is.
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Old 09-12-2015, 06:44 PM
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Originally Posted by PXMAN View Post
Please tell us what dystonia is.
https://en.wikipedia.org/wiki/Dystonia
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Old 09-12-2015, 07:22 PM
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I have had a number of clients over the years with dystonia.
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Old 09-12-2015, 07:26 PM
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Originally Posted by PXMAN View Post
Please tell us what dystonia is.
If i am correct Parkinson's and Dystonia are pretty much related.
Pretty much the same problems with involuntary muscle contractions
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Old 09-12-2015, 07:36 PM
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Yes

It's not Parkinson's

Feel free to send me a pm if you have any questions.
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Old 09-12-2015, 07:36 PM
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Originally Posted by Thalasso View Post
Michael J Fox has it
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Old 09-13-2015, 01:56 AM
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I've been diagnosed with it for about 4 years now and I was just wondering if anyone here knew someone with it and how bad it got for them. Mine started in the neck and has now spread to my face and right eye, arms and legs. I have only spoken to one other person with it and her's was very mild, nothing mild about it but, compared to me. I would like to talk to someone else who has it. Dystonia is worse than parkinsons. Parkinsons takes away the mind which is a plus. Dystonia wont kill you, it will make you kill yourself. Around here if I go out in public every redneck you see looks at you like you're OD'ing on meth. I just really need to talk to someone. The pain, isolation, depression have me going WTF at least 30 times a day. Really just wanting to talk to someone and see how they deal and if someone else's outlook is as harsh as mine and how to they keep on.
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Old 09-13-2015, 03:56 AM
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Sorry for your situation. I do not have it, but ran treatment centers that included patients with it. As you already know, the treatment needs to be customized to each person and finding the right physician for you is important.
Support groups can be a positive help in finding others who travel your path. I believe you probably have this info already, but in the off chance you don't, https://www.dystonia-foundation.org/online . It has the links to several online support groups.
All the Best
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Old 09-13-2015, 05:04 AM
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Dang. Sorry to hear that.
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Old 09-13-2015, 06:06 AM
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Originally Posted by Fish'nFool View Post
What is the relationship between Parkinson’s and dystonia?

Dystonia and Parkinson’s disease (or parkinsonism) are movement disorders that are closely related. Parkinsonism is a term used to describe any clinical presentation that manifests in the cardinal symptoms of Parkinson’s disease (tremor, rigidity and slowness of movement).

Some experts estimate that forty percent of people living with Parkinson's disease experience dystonia as an early symptom or as a complication of treatment. Some forms of dystonia (see below) are characterized by parkinsonism, and other neurodegenerative disorders, such as Wilson's disease, may have symptoms of both dystonia and parkinsonism.

What are the other types of dystonia?

There are two main categories of dystonia: primary and secondary (or non-primary). Primary dystonia is a condition in which dystonia is the only clinical feature. There is no evidence of cell death or a known cause. It is also known as idiopathic torsion dystonia. Primary dystonia is thought to have greater genetic contribution, even in the absence of a family history of dystonia. Among forms of primary dystonia, the most common (and the most debilitating) is generalized dystonia, which affects the legs or one leg and the trunk, plus other regions, most commonly the arms.

Outside the context of Parkinson’s disease, there are several other types of secondary dystonia

Beings the below link doesn't work this one will.
http://lmgtfy.com/?q=Michael+J.+Fox+dystonia

Dyskinesia - Michael J. Fox Foundation
https://www.michaeljfox.org/.../topic.php...
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Old 09-13-2015, 06:13 AM
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Originally Posted by Thalasso View Post
What is the relationship between Parkinson’s and dystonia?

Dystonia and Parkinson’s disease (or parkinsonism) are movement disorders that are closely related. Parkinsonism is a term used to describe any clinical presentation that manifests in the cardinal symptoms of Parkinson’s disease (tremor, rigidity and slowness of movement).

Some experts estimate that forty percent of people living with Parkinson's disease experience dystonia as an early symptom or as a complication of treatment. Some forms of dystonia (see below) are characterized by parkinsonism, and other neurodegenerative disorders, such as Wilson's disease, may have symptoms of both dystonia and parkinsonism.

What are the other types of dystonia?

There are two main categories of dystonia: primary and secondary (or non-primary). Primary dystonia is a condition in which dystonia is the only clinical feature. There is no evidence of cell death or a known cause. It is also known as idiopathic torsion dystonia. Primary dystonia is thought to have greater genetic contribution, even in the absence of a family history of dystonia. Among forms of primary dystonia, the most common (and the most debilitating) is generalized dystonia, which affects the legs or one leg and the trunk, plus other regions, most commonly the arms.

Outside the context of Parkinson’s disease, there are several other types of secondary dystonia


Dyskinesia - Michael J. Fox Foundation
https://www.michaeljfox.org/.../topic.php...
Dude I know what Dystonia is and I know more than I wish I did, but thanks for the lesson. It ain't Parkinsons. MJF has Parkinsons. Please bow out of this discussion.

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Old 09-13-2015, 07:12 PM
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Chris, give you wife all the best and once again thank you for being a caregiver. Most people just run. Like I said dystonia has beaten me.

Last edited by Bugbuster; 09-13-2015 at 08:28 PM.
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Old 09-13-2015, 08:04 PM
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Bugbuster,
I wish you all the best.
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Old 09-14-2015, 05:44 AM
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Worth a try....

Just cause there is not much info..doesn't mean it won't help, little likelyhood it will hurt

https://www.aan.com/Guidelines/home/...ineContent/650
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Old 09-14-2015, 11:30 AM
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Originally Posted by gumpire View Post
Worth a try....

Just cause there is not much info..doesn't mean it won't help, little likelyhood it will hurt

https://www.aan.com/Guidelines/home/...ineContent/650

Still illegal in Georgia, stupid bible thumpers.
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Old 09-14-2015, 05:21 PM
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Very sorry to read this. Hopefully you will find some peace and comfort as you battle this.
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