Finalizing the Definition of Dystonia
Hello Everyone.
Happy Fall today. ( My bones feel it ..! )
Using the Definition below posted by Tom, let's try to come to a consensus of a new definition for Dystonia. Many of you have given great insight and input into what and how dystonia should be defined.
Using the " Template " below, let's try to come to an agreeement on a forthcoming NEW Definition that attempts to satisfy everyone, yes ?Then, we will talk about a new Leaders in Dystonia Awareness Campaign that quite a few of you will want to get involved in the future.
Template :
Dystonia is a family of neurological movement disorders characterized by involuntary muscle contractions, spasms, twisting, pulling, and/or tightness in one or more parts of the body. It causes abnormal crooked, distorted postures and painful, involuntary movements. While the neck is the most commonly affected region, it can manifest in any part of the body, such as the face, eyes, jaw, throat, arms, legs and feet, many of which have been given their own specific name and classification by the medical community.
Let's try to keep the definition clear, simple and understandable. Your input and consensus is VALUABLE. As you are valuable !
beka
Happy Fall today. ( My bones feel it ..! )
Using the Definition below posted by Tom, let's try to come to a consensus of a new definition for Dystonia. Many of you have given great insight and input into what and how dystonia should be defined.
Using the " Template " below, let's try to come to an agreeement on a forthcoming NEW Definition that attempts to satisfy everyone, yes ?Then, we will talk about a new Leaders in Dystonia Awareness Campaign that quite a few of you will want to get involved in the future.
Template :
Dystonia is a family of neurological movement disorders characterized by involuntary muscle contractions, spasms, twisting, pulling, and/or tightness in one or more parts of the body. It causes abnormal crooked, distorted postures and painful, involuntary movements. While the neck is the most commonly affected region, it can manifest in any part of the body, such as the face, eyes, jaw, throat, arms, legs and feet, many of which have been given their own specific name and classification by the medical community.
Let's try to keep the definition clear, simple and understandable. Your input and consensus is VALUABLE. As you are valuable !
beka
Tags: definition, dystonia, explanation, muscle, neurology, redefining, spasms, wording
Replies are closed for this discussion.
Replies to This Discussion
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Permalink Reply by Thorns on -
I think there should be a part about dystonia does not affect intellect and it is NOT a psychological disorder. Thorns
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Permalink Reply by Lene on -
That is a good statement thorns. Many people where told it was in their head in a psychological way. Lene
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Permalink Reply by BDrake on -
Lene & Thorns,
I completely agree but since several doctors can be attributed to believing that it can be psychogenic, (Joseph Jankovic for example) I don't know if it can be stated as fact that there are no psychological aspects to it, in the definition. It would be nice though since I think a lot of doctors use that diagnosis as a scape goat.
I have found this article full of information:
http://www.unites.uqam.ca/cnc/en/profs/dystoniachapter.pdf
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Permalink Reply by Robin Wood on -
To spasm is to contract
Spasm ~ a sudden, abnormal, involuntary muscular contraction, consisting of a continued muscular contraction (tonic spasm) or of a series of alternating muscular contractions and relaxations (clonic spasm).
Contraction ~ The shortening and thickening of a muscle for the purpose of exerting force on or causing movement of a body part
A spasm as per the above definition is an involuntary muscular contraction in itself
What about adding Sustained
Where it says: It causes abnormal crooked, distorted postures and painful, involuntary movements. Maybe this could read: The results of these spasms causes painful and abnormal body postures, with some Tremor may also come which causes involuntary movements
Where it says: While the neck is the most commonly affected region, it can manifest in any part of the body such as: Maybe this could read: While the neck is the most commonly affected region, it can manifest itself in one or more parts of the body such as:
I also think that where it says: twisting, pulling, and/or tightness that might also be a little redundent, twisting is good though.
CD is the most common form of dystonia, I've read many times where 70% of all people with dystonia have CD, the only thing that I've always been unclear of when searching out the prevelance of dystonia is if CD is the only form that these people have. I've attached a study below that I requested from ... oh heck and now I can't remember who I requested it from, oh well :)
ok that's my two cents :)
Robin - Attachments:
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Permalink Reply by beka on -
I have read everyone's comments here in this finalization of the useful, usable, understandable , clear definition of dystonia.
What I am hearing is a bit too much analysis, too many specifics, individualization in relation to the form of a specific form of dystonia. I am seeking general terms that cover most of the symptoms and overall description of dystonia, which is what a definition should be. Per se, the definition is geared towards the general public, the newly diagnosed and , of course , physicians will be seeing it as well on new C4D Rack Cards that will be distributed to the Movement Disorder Society.
Definition Deadline will be October 6, 2008. Otherwise this conversation will go on and on without a resolution. It is simply impossible to place every single word in the dictionary describing spasms, pain, crooked, contortions in a general SIMPLE UNDERSTANDABLE definition of the disorder. I hope that everyone understands and recognizes how useful their comments are, but I do need to set a deadline.
Sis- please remind us of your definition here.
beka
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Permalink Reply by Tom on -
Based on the recent feedback I have come up with the following:
Dystonia is a family of neurological movement disorders affecting one of more parts of the body. It is characterized by involuntary muscle spasms or contractions, repetitive movements, twisting, pulling, and/or tightness. This can cause painful and abnormally distorted body positions, and for some, a tremor may also be present. While the neck is the most commonly affected region, it can manifest in the face, eyes, jaw, throat, arms, hands, legs and feet, many of which have been given their own specific name and/or classification. Dystonia is not a psychological disorder and does not impair ones cognitive ability.
I added "repetitive movements" (not sure if anyone likes this but thought I would add it since it is what happens) and the part about it not being psychological. Also not sure if this is needed bacause we are talking about what dystonia is, not what it is not.
I do not think the word sustained should be used because it is too specific and not everyone has sustained spasms or contractions. Some have intermittent spasms so this would not be accurate and we can't cover everything in a defintion that everyone experiences. It has to be an overall picture of what most experience in general.
I also think using twisting, pulling, and/or tightness is not redundant because they are different experiences. I went from a slight turn to flopping, to tightness, to pulling, to twisted, all happening at the same time and at separate times. I know this is the case for many so these words to me pretty much cover what is experienced in general and how it is talked about, and general is what we are after I believe.
I also put in "spasm or contraction" because a spasm as it is defined is either a constant or intermittent contraction, and a contraction is the shortening of a muscle caused by a spasm. So, for those who have a sustained contraction, they do not really have spasms as I understand it, or as we with spasms would describe it. I can go either way with this one, but when it comes to how people describe this experience, they use both words depending on what they feel is happening and for those not diagnosed or are newly diagnosed, these words are tyoically used to describe their experience. But again, I am fine with just spasms if that is the consensus.
Please let me know what you all think.
Tom
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Permalink Reply by BDrake on
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Tom-
I really like this definition. I am still not so sure I understand it being " a family of neurological movement disorders". Can someone explain that to me?
~Becky
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Permalink Reply by Tom on
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Becky,
Dystonia is the umbrella term for the different movement disorders. So saying Dystonia is a "family" means it includes
generalized dystonia; affecting most or all of the body
focal dystonia; affecting a specific part of the body
multifocal dystonia; affecting two or more unrelated body parts
segmental dystonia; affecting two or more adjacent parts of the body
hemidystonia: affecting the arm and leg on the same side of the body
And under these classifications are more specific ones like ST (or CD), Blepharospasm, Cranial dystonia, Oromandibular dystonia, writer's cramp, etc.
Hope that helps.
Tom
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Permalink Reply by sisdailey on -
Dystonia is a family of neuromuscular movement disorders, typically causes severe,uncontrollable muscle spasms in any or all parts of the body, often resulting in bizarre and painful postures. Dystonia can be crippling. Presently, there is no cure. The effects of any form of dystonia are far reaching. With many who are affected jobs are frequently lost, and social interactions become so painful that isolation and depression are a common result. Options for treatment are limited and should be provided by a neurogolist movement disorder doctor. Research is on going to hopefuly find a cure for this relentless disorder.
Sisdailey
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Permalink Reply by Tom on
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Dystonia does not really fall under the category of Neuromuscular, so that would be somewhat of an innacurate characterization in my opinion. I like what you have to say if I were to describe it to somone in a conversation who asked me to tell them about it and what it has done to my life, but I just do not feel that this is appropriate as a clinical definition that speaks to the disorder enough as a definition that will be on rack cards in a clinical setting.
I think the things you mention could be put on a rack card in other areas, but as for the secton that has the definition, I think it is too conversational and not really a descriptive definition of a disease. If I were to write a definition for cancer, for example, I would not talk about how it affects social or work life, or isolation and depression. These are all side effects of having dystonia, but does not define what dystonia, the disorder itself, is, whcih is what I think we are shooting for here. That is my only problem with it Sis.
Tom
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