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Posted by: saradshort ®
12/04/2006, 21:22:19


I'm starting a blog for spasmodic dysphonia and I'd like to invite you to visit. Since I'm new to this Bulletin Board, I don't know if this has been tried before. I feel that the computer is a fantasitic tool for communication and a blog is a fun way to be in contact with others who have similar interests. I like to keep things upbeat and so this will be a positive blog about stories, experiences, friendship, and hope. If you'd like to visit, it's at http://www.voicedisorder.blogspot.com If you're interested in sending me a submission telling your story, fun anecdotes, successes, my email is restonshort@comcast.net
My goal is not to replace this bulletin board but to add another forum for communication. Blogging is fun!,
Sara



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Re: Spasmodic Dysphonia Blog
Re: Spasmodic Dysphonia Blog -- saradshort Top of thread Archive
Posted by: Sandshoe ®
12/07/2006, 22:42:46


Dear Sara

I have just had a look at your blogspot. Although I was only hurried in my visit I can see how much excellent attention you have given its construction and content! I am so pleased to think you are providing such an excellent resource for SD. I want to say thank you very much for your thought that your experience is so important.

I hope that in the New Year I can email a contribution to you as you invite! Thank you so very much for being so considerate and creative!

Christina.




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Re: Spasmodic Dysphonia Blog
Re: Re: Spasmodic Dysphonia Blog -- Sandshoe Top of thread Archive
Posted by: saradshort ®
12/11/2006, 07:06:59


Christina,
Thanks so much for your response and for checking out the blog. After I got my first botox shot I was so completely energized that I had to do something to let people know about my experience. I can't believe what a difference it's made in my life in such a short period of time. I've always been a "talker" and the last three years I've had to swallow sooo many words. Now it's all bubbling out and I'm sure the people around me are soon going to be telling me to be QUIET!. But the blog is one more way to share the experience and hopefully connect with other SDers. I'd still love to hear from more of you and would love to post some of your stories.
Thanks again,
Sara
ADSD since 2004



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Re: Spasmodic Dysphonia Blog
Re: Spasmodic Dysphonia Blog -- saradshort Top of thread Archive
Posted by: Lynne ®
12/12/2006, 18:11:08


Dear Sara,

Good wishes to you on your new blog but would you mind making ONE important change to its title, please?

You call it "the Spasmodic Dysphonia blog." Would you mind changing the title to "MY Spasmodic Dysphonia blog?"

Because many of us have advocated on behalf of voice patients and research for many years and because many people have blogs, it's important NOT to give the impression (on Google, or any seach engine) that you or any of us is the consummate authority on SD. By saying "the," you are giving the impression in the search engines that you are THE expert.

A blog is a blog. Web log. A personal diary. Thus, "my" is much more appropriate for your blog, so that new patients do not become confused when searching the Internet.

Example: My son is currently in Iraq on his second tour and has a blog sharing his impressions of what is going on there. He does not call it "THE Iraq War blog."

It's important to share feelings about one's vocal/medical journey so I applaud you on starting your blog but I've had severe SD for 17 years, and helped many voice patients along the way over the past 10 years, and have had cancer for one year and advocated for cancer patient. But, a blog saying "the SD blog" or "the cancer blog" would not be a good idea. Can you change it, so people understand - when finding it on a search - that it is merely your experience, and not authoritative or medically expert?

Thanks and best wishes,

Lynne (AD-SD; RLN surgery; PVFM - breathing; Northern California)

PS: To get more info on what I'm talking about, many people all over the world now consider Scott Adams an expert on SD (if you read blogs) only because he mentioned his own case online in his Dilbert blog. I was shocked to read various blogs commenting on his, when he mentioned "curing" his SD. I frankly believe this is very dangerous for anyone researching vocal disorders, and SD specifically. Please be VERY careful to not appear to be a medical expert. Changing "the" to "my" would help a lot.




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Re: Spasmodic Dysphonia Blog
Re: Re: Spasmodic Dysphonia Blog -- Lynne Top of thread Archive
Posted by: saradshort ®
12/14/2006, 11:18:19


Wow Lynne! You seem to have pretty strong feelings about the title of MY blog.
Sure, I'll consider changing it. I respectfully disagree that anyone who bothers to visit my blog would think I am any kind of an EXPERT! In fact, I clearly stated in my opening post that I don't claim to be an expert, merely a person with SD who wishes to connect with others affected by this disorder. A blog, by definition, is ONE person's personal publication of their own web log. I can't imagine anyone considering ANY blog to be the place to go for expert advice.
To be honest, so far the blog has not been very interactive and since my purpose was to "connect" and that isn't really happening, I doubt I'll be able to keep it going for long. It's difficult to keep it going when no one takes the time to comment.
Thanks for your input,
Sara
ADSD
PS: I just googled "spasmodic dysphonia" and you're right. It does come up at the bottom of the fifteenth page of possible websites for that entry.



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