Awareness - here's a great chance to educate!
I was doing my daily blog checks and ran into this post about Dystonia - Here's why it's hard to move when you have pain on the popular blog How to Cope With Pain. I actually ran into this when I read the sister post there about muscle relaxants.
Normally I really love this blog for its easy explanations and the wide range of topics it covers. When I read this I was a bit uneasy - muscle relaxants as a treatment for Dystonia, described as simply 'long-lasting spasms' - Hmm. There was discussion as to what Dystonia truly is that didn't seem as helpful as they might be, as well as treatments which didn't begin to touch upon those that are seen as the most effective. I believe the post really is more about secondary Dystonia as related to the pain disorder RSD (Reflex Sympathetic Dystrophy).
Don't get me wrong - I absolutely applaud the site for mentioning Dystonia and doing their best to begin a discussion about it. They have opened an important door and a chance for those who suffer Dystonia to educate and create that vital awareness we're always talking about. My purpose is to ask Health Activists here to do something about awareness - here's our chance.
Would you be willing to go to this helpful site and carefully, kindly tell them about Dystonia? What do you think of the door they opened by beginning discussion about Dystonia, even if it might be somewhat vague or not entirely accurate? What helpful facts did you pass along to the blog?
Normally I really love this blog for its easy explanations and the wide range of topics it covers. When I read this I was a bit uneasy - muscle relaxants as a treatment for Dystonia, described as simply 'long-lasting spasms' - Hmm. There was discussion as to what Dystonia truly is that didn't seem as helpful as they might be, as well as treatments which didn't begin to touch upon those that are seen as the most effective. I believe the post really is more about secondary Dystonia as related to the pain disorder RSD (Reflex Sympathetic Dystrophy).
Don't get me wrong - I absolutely applaud the site for mentioning Dystonia and doing their best to begin a discussion about it. They have opened an important door and a chance for those who suffer Dystonia to educate and create that vital awareness we're always talking about. My purpose is to ask Health Activists here to do something about awareness - here's our chance.
Would you be willing to go to this helpful site and carefully, kindly tell them about Dystonia? What do you think of the door they opened by beginning discussion about Dystonia, even if it might be somewhat vague or not entirely accurate? What helpful facts did you pass along to the blog?
Tags: blog, chronic pain, dystonia, how to cope with pain, pain, rsd
Replies to This Discussion
-
Permalink Reply by ramona on -
Hmmm, there sure doesn't seem to be much information here regarding dystonia. Am I missing something? Is that the point - are you trying to have folks make comments to help them understand? Wonder which post it would be more applicable on?
Ramona
-
Permalink Reply by Ellen S on -
Yes Ramona- exactly right. It was fabulous that they mentioned Dystonia because we know how important awareness is. They need help and support from the Dystonia community... they need more information on either/both posts.
-
Permalink Reply by beka on -
Hi Ellen - I just posted responses to the blog abogs about pain and the sister site....Mirror Therapy... uhmmm?
beka
-
Permalink Reply by ramona on
-
Hey Beka, House used it, so it MUST be a valid therapy, right?! :-) (This is meant be humorous and not sarcastic, by the way. I have no idea if mirror therapy really can be helpful or not!)
-
Permalink Reply by kdorff on -
When I was working with a neurological physical therapist (who had done her homework about dystonia) she actually tried it with my feet. The specifics of how I sit because of my dystonia made it such that we could never get it set up right. (The idea was to have me watch my left foot in the mirror, but I bend severely to right.) There is a number of other disorders where it can help, but I have no idea whether it has ever been successful in helping dystonia patients.
-Kat
-
Permalink Reply by Rosemary on -
I think Oliver Sacks, the renowned neurologist (or at least he mentioned on an interview with Radiolab a great program on the radio out of WNYC. It may have been another leading neurologist who used it and Sacks jsut mentioned it.) used mirror therapy with people with phantom limb pain.
-
Permalink Reply by Ellen S on
-
I think the mirror therapy is more specifically to help with RSD - the pain disorder. I do remember seeing studies maybe a year or so ago. Pain is just one part of RSD. Dystonia is often a part of the RSD phenomenon. There are some fabulous people at WEGO Health with RSD, including Coach Marla - the first RSD coach. She's just a super wonderful person. I encourage you to take a minute and tell her "hello"...
© 2009 Created by Marie
