Spasmodic Dysphonia Bulletin Board

There are several in my support group and who I've met in person who say they were helped by acupuncture, retraining classes, arbitrary techniques, etc. and say their SD is better. But when you listen to these folks, you hear their SD symptoms.

So I think it's easy to post on a BB all these theories and promote thousand dollar classes undercover, but at the end of the day if these classes or techniques actually helped people, there would be NO IDENTIFIABLE REASON why the leaders of the classes and/or the patients themselves should shun the idea of their results being objectively and blindly rated by experts in the field.

There are two such individuals who lead retraining and/or "curative" classes who refuse the suggestion of having their results verified by outside objective blinded raters and to me that speaks volumes. They don't work!

In talking about the placebo effect, another thing to consider is the emotional "high" one may gain after attending such a classes, NEEDING to believe that something will work as SD can be so devastating, only to realize weeks, months later that it didn't work or that he/she needs to return to this class (still convinced it will work, unfortunately), etc. Or how easy it is to throw around theories of neuroplasticity, the results of recovering patients with other neurological disorders, etc. and create false hope in those who may not be able to filter the fancy terminology with some critical thinking skills.

But in the end, the main problem with all of these types of claims is that no one will prove (objectively, blindly -- not "my friend told me the other day that I sound good.") that the results are real.

I say, who cares about theories one can make "sound" good. Why not just objectively prove the results (again not, he/she said, did, my boss thinks, my husband, the girl in the elevator...)?

So while I don't see everyone who posts improvement as having ill intent, and I think that some may indeed have SD, they may not have an objectively verifiable improvement in their voice.

To me, when it comes to some of these organized clinics, it's preposterous. If anyone had a real cure/improvement/overcoming program, he/she would prove the results outside of subjective comments by the class participant and/or instructor who charges several thousand dollars. Otherwise, it's a huge dis-service to our community and speaks volumes about the extent to which it actually works. If it was THAT successful, it'd be THAT easy to prove.

So I'd challenge any of these folks to be mixed in with 10 other SD patients and then blinded evaluated by outsiders who know nothing of who went through the class and who didn't, who read the book, came to a realization, etc. and those who did not.

So I agree, it's not always an SD vs. MTD thing, it's more a refusal to verify the results.

It amazes me when I meet people who will speak with their breaking voice right in front of me that X helped them. And I'm thinking, "OK then!"