Why I Started This Page

by Micki Nellis

I started this page of links because the National Spasmodic Dysphona Bulletin Board Moderators sent me a blunt message that my posts were no longer welcome on the BBS and would be deleted. This blunt rebuff came from a "support" group. Part of that message appears at the end of this page.

I finally realized that my pursuit of non botox and non surgical remedies for spasmodic dysphonia was not welcome. I intended to keep researching, and decided to make my research links available on this page, which I maintain and pay for myself. These pages have no connection with any organization. If you are interested in these links, then you are welcome.

Doctors say they do not know the cause or cure for Spasmodic Dysphonia. If they do not know the cause or cure, then they CANNOT RULE OUT anything until a scientific study has been done to either refute or corroborate it. I do not believe there is no cure for Spasmodic Dysphonia. I believe that there are very few people working on a cure, and there is little financial incentive to find a cure. Possibly there are several causes and several helps for SD.

You are welcome to correspond with me and are urged to send helpful links and personal experiences on how you improved or cured your spasmodic dysphonia or muscle tension dysphonia.

Keep in mind that the National Spasmodic Dysphonia Association (NSDA) lists Allergan (makers of botox) as a financial sponsor. Perhaps this explains the efforts of the moderators to keep the bulletin board firmly focused on botox.

I find it ironic that I can get a shot of botulism, the most deadly poison known to man, virtually on demand, yet my posting on the NSDA bulletin board that an $8 bottle of GABA from the health food store makes my voice smoother is labeled as dangerous and is disallowed.

Following is part of the message sent to me by the NSDA BBS moderators:

****

To date we have not acted on complaints we have received about these posts
but have now decided to delete these when they appear. They would be
better aired in a forum that concentrates on alternative health treatments
and nutritional products. While our guidelines allow discussion of
alternative therapies, they should generally be in an SD context, and we
feel some of your posts do not pass this test.

Our duty to our readers and fellow SD patients is to keep the emphasis on
the NSDA BB squarely on SD itself - and we have decided that posts of this
kind do not follow the BB guidelines. While generally a desire to avoid
dangerous products and eat a healthy diet would help all of us, the NSDA BB
is not the appropriate forum for these kinds of posts.

Best wishes

Lloyd Pearson
David Barton
David Barton

International Communications Director, NSDA
***

End of excerpt from letter.

***

Update September 14, 2004

The moderators of the NSDA bulletin board continue to remove my posts. The last one was on how to stimulate saliva flow in the mouth by rubbing under the chin. In addition, on September 13, 2004, they removed a reference to this website from another person's post.

Why? This website sells nothing, promotes nothing, asks for no money, labor or donations of any kind from anyone. Why then is it such a threat to the National Spasmodic Dysphonia Association?

My guess is that the NSDA is totally in the pocket of Allergan, makers of botox. Another guess is that Allergan donates a pittance of money to NSDA, but reaps far more than it donates.

Should a non-profit organization supposedly devoted to finding a cure for spasmodic dysphonia, and supporting those who have it, be a pawn for a drug manufacturer? In my opinion, Allergan makes so much money from Botox Cosmetic that they should not be worried when persons with voice problems research other options.