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Oct. 2nd, 2008 05:42 pmI attended my first dystonia support group meeting today. It was nice talking to others who are dealing with similar (or worse) dystonia issues than I have. I have very little contortion (or twisting) -- generally my right shoulder will reach toward my ear or I tilt my head to the right. Sometimes I do this head shift to the right while my head remains perpendicular to the floor (which looks really, really weird). Mostly I get pain from two opposing muscle groups contracting at the same time continually.
Today's meeting was with a representative from Allergan (who makes Botox). She wasn't there to sell us the product, but rather explain how Botox works, what the realistic side effects might be and why, and what support is available if your doctor recommends it but you can't afford it. I could tell the FDA has been cracking down on pharmaceutical reps.
Talking with the others was reassuring. I didn't gather any new strategies, unfortunately, but I was able to provide some strategies for the others (speaking of which, I need to remember to e-mail the group). All in all it was a good meeting; I don't feel quite so alone dealing with this now.
S
Today's meeting was with a representative from Allergan (who makes Botox). She wasn't there to sell us the product, but rather explain how Botox works, what the realistic side effects might be and why, and what support is available if your doctor recommends it but you can't afford it. I could tell the FDA has been cracking down on pharmaceutical reps.
Talking with the others was reassuring. I didn't gather any new strategies, unfortunately, but I was able to provide some strategies for the others (speaking of which, I need to remember to e-mail the group). All in all it was a good meeting; I don't feel quite so alone dealing with this now.
S