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Rosemary
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Lisa: what kind of dystonia do you have?
7 hours ago
Not sure about God either, but not an atheist, more like an agnostic ( Which means: a. One who believes that it is impossible to know whether there is a God b. One who is skeptical about the existence of God but does not profess true atheism.). Ag...
November 14
November 14
Elaine: I am so sorry you feel that you don't fit any where. All other Dystonians, I am sure, support you. We may not know precisely what you are experiencing, but we too have faced challenges. I wish better roads ahead for you.
November 13
For other participants, here is what a cholesteaoma ishttps://health.google.com/health/ref/Cholesteatoma. I have Generalized that includes oromandibular. I should note that I broke my jaw in a bike accident, along with experiencing a head trauma ...
November 13
Did nothing for me, but everyone is different.
November 11
My Physiatrist bought that up and suggested that I be tested ( I have Generalized, DYT1 neg, and it did progress), now I know where that idea came from. Subsequently, I ask my MDN about it (Hermanowicz), he didn't think that is what I had- but he ...
November 11
Hi Noel: Let us know how your pitch goes. I will see my Physiatrist on Thurs but- given time constraints on docs these days- usually hardly have time to get my injections, never mind bring up something like this, but I will try. This docs backgrou...
November 7

Profile Information

Location
92660
More about me (my health interests and reasons for joining WEGO Health)
Generalized Dystonia. Failed neck surgeries (Not a good mix). Diagnosed in 1999. Single, disabled from work as Env./Nat Res. Consultant, working (slowly) one class at a time towards Master's in Nutrition- esp. interested in brain and nutrition, nutritional needs of special populations. For me this is the other side of my life long interest in plant biology (since plants are ultimately the source of nutrition even when fed to animals and converted to meat/dairy). Do some container gardening (herbs/vegies). Avid reader. Try to stay as active/fit as possible. Still swim some (with swimmer's snorkle and fins to reduce shoulder load), ride bike with brace on bike trail (cars prohibited), and do some walking with brace. My Dystonia probably dates back to head trauma when I broke my jaw when I was a teenager.

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At 7:31pm on January 27, 2009, TWISTEDJAM said…
Hello Friend !

I've added you to the twisted tree pic.
You're right below Lene!

Take care

Grace/twistedjam
At 12:40pm on January 27, 2009, TWISTEDJAM said…
Hi Rosemary ...

Thanks for stopping by and commenting on my blog.
So glad you enjoyed it !

I did send a copy to Dystonia Foundation here in Canada.
Their reply back to me was ... "very nifty pic".

I'm trying as best as I can to spread "awareness" !

This pic was as close as I could possibly get to depicting the "feeling" of having Dystonia.

Take care

Grace/Toronto
At 10:28pm on September 12, 2008, Trudy said…
Welcome Rosemary,
I too have experienced a head trauma in my teens (car/semi accident with my head as receiving brunt of impact) and believe this is where my symptoms stem from.

Thank you for your comments and I look forward to reading more of your experience, insights and questions.

Take care,
Trudy
At 3:25pm on September 11, 2008, beka said…
Hi Rosemary - Of course, the force of the twisting can break rods. If sensory tricks cant help, imagine what can ???
I take Calcium and Vitamin D3 as well. Nerve damage - occassional numbness in my hands...use Klonopin for pain...
Immune to both toxins.. had DBS...which is another whole set of issues...
Just email me directly at infoc4d@aol.com
beka
At 2:30pm on September 11, 2008, Rosemary said…
Bekka: Are your nerves involved following the disc fractures? What do you use for pain?
At 12:33pm on September 11, 2008, beka said…
Rosemary - with your background- you can certainly add info to the new post on Herbs, Vitamins I just began...

beka
At 12:32pm on September 11, 2008, beka said…
Thats great for offering your help. i think this is a doable project. And can help get the word out in an unusual way.
Disc vetebral is not unusual. I have disc fractures from levels T6 to T10- mid back.
beka
 
 
 

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