Spasmodic Dysphonia Bulletin Board

About the name spasmodic
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Posted by: Bill ®
09/28/2005, 21:06:12
The reason I posted my comments below about changing the name...

I recently had a conversation with one of my professors at school about strategies I might use in first contact situations. She is a teacher that has interest in group dynamics and understands the importance of first impressions in work group settings.

She recommended that I do not use the name spasmodic dysphonia when explaining my condition as the occassion arises. She stated that spasmodic has a negative conotation in our society, and that using that lable may influence others' perceptions of me in a negative way.

Obviously this is a blanket statement, and not all people will judge based on nomenclature alone. However, I don't think it would hurt to eliminate such negative perceptions by changing the name. This is difficult to deal with already, why make it more difficult on us by having a poorly chosen name for the condition...???

We certainly can choose what to call it as we explain it to people, but it would be nice to wear bracelets that say voice dysphonia, or laryngeal dyphonia (not spasmodic), and have cards to hand out to people that say voice dysphonia or laryngeal dysphonia.

Anyway, just my thoughts...




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Re: About the name spasmodic
Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: jmpath ®
09/28/2005, 21:23:26
I completely agree. Let's do this.

jean




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- jmpath Top of thread Archive
Posted by: Bill ®
09/28/2005, 21:39:16
I wonder if we all could do a little research...

Maybe we could create some informal surveys in our individual circles of influence.

We can list the names spasmodic dysphonia, voice dysphonia, and laryngeal dysphonia, or any other good name people can come up with (or dystonia), and ask people to rank the names in order of their perceived connotations. In other words, ask them to indicate which names carry the most negative connotations.

I'd be interested to know if anyone has done something like this...???

I'm concerned that the powers that be got too focused on potential causes and characteristics of this condition when creating the name spasmodic dysphonia, and forgot about the patients reality...that is, we have to deal with this and explain it to people everyday.




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: kim ®
09/28/2005, 22:45:34
Again, I agree with you.

I have always hated the name of our "condition"

I use voice disability, dystonia of the vocal cords, etc.

Like I've said many times, I dislike, very much, the name "spasmotic dysphonia", and I guess I will say the reason why again. It makes me sound like I'm spastic and have a phone phobia, which does not help me in terms of explaining my voice condition at the work place.

I do not like it at all either, I feel "labeled (sp?)". I do not think any one should have to tell people that they have a "neurological condition and that the name of it spasmodic dysphonia". Because no one gets it.

When I went to my 1st ENT, he said I have SD, and I asked, "well what does that mean" and he said "it means you have a bad voice". That was back in 2003

If we choose a new name, maybe it should be something like vocal cord condition. I don't know, but I hear you.

We will think of something.

Kim/Houston AB/SD

Bill, is it alright if I ask where you live? I live in Houston

Kim




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: Bill Vanderlinde ®
09/29/2005, 09:56:50
In the old days (pre-1960) SD was called "hysterical dysphonia" and was thought to be psychogenic in origin. Today we have strong evidence that SD is a neurological disorder and that terminology has been (I hope!) eliminated.

I guess I'm used to the term spasmodic dysphonia and it doesn't bother me. But some people prefer "laryngeal dystonia" because it gives a better description of the condition, i.e. that it is one form of a broader set of neurological conditions called dystonia.
Bill V.

P.S. When I first did a web search on "spasmodic dysphonia" back in the mid-1990s, I found a website for a grung-rock band that called itself Spasmodic Dysphonia. At first that made me really angry, but looking back I think it is kind of funny.




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Re: About the name spasmodic
Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: mary salisbury ®
09/29/2005, 11:51:54
I guess I would have to say that I agree with you about the name spasmodic dysphonia. I have never been wild about it either. (And I'm not one that gets easily riled up about this kind of thing.)

But ever since I first got diagnosed, when I've told others about my voice, I've either said I have a voice disorder or that I have a disorder called laryngeal dystonia. The spasmodic dysphonia name just
seems to carry a lot of baggage around the word "spasmodic." (Maybe it's because I'm an English teacher so I pay close attention to the power of words--or maybe it's because I teach middle school where too many kids have immature attitudes towards anything associated with the words "spastic." There a teenage slang that's been around since I was a kid, thatgoes "Don't spazz out about that ." (Don't get all upset) or
"Don't be such a spazz" (This can mean don't be such a klutz (uncoordinated) or it can mean don't act like an embicile.) Kids still use these terms every day. They use them as put downs.

So Yeah, I get what you're saying. I'd prefer a different name for the
disorder, too.

Mary Salisbury
AB/Ad SD, Minnesota




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Re: About the name spasmodic
Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: acewood ®
09/29/2005, 13:57:31
I agree. I kind of like the term "Monster Voice" that was mentioned in a post below. It's short and easy for people to remember.

Dave ABSD




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- acewood Top of thread Archive
Posted by: kim ®
09/29/2005, 21:53:22
I don't like "Monster Voice" for the name. Monster's are scary. My voice sounds more like a mouse, than a monster.

Sorry, it's just my opion.

Kim/ABSD




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- kim Top of thread Archive
Posted by: snowie ®
09/30/2005, 01:40:36

Awww Kim that did make me laugh! ..... if it's any consolation so does mine .... I have Ab Sd too.

To be honest I wouldn't be too keen on 'Monster voice' either ... I think laryngeal dystonia ia a good discription. I am just trying to imagine people's responses if they asked me what was wrong with my voice and I said, 'I have monster voice' :).

Snowie
Ab Sd, London, UK



Modified by snowie at Fri, Sep 30, 2005, 01:43:20

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Re: About the name spasmodic
Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: kitchensync ®
09/30/2005, 09:26:18
I like to refer to it as my "Marilyn Monroe accent" :o) For me being a young woman with a very breathy voice brings back memories for many of Marilyn's fans. It's a lighter way to look at it.

Lynn
Vancouver, BC




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Re: About the name spasmodic
Re: Re: About the name spasmodic -- kitchensync Top of thread Archive
Posted by: Tommyinme ®
10/08/2005, 03:37:14
I haven't given much thought to renaming our illness, but I remember when I had the illness and nobody really knew what it was. I was happy to finally get a correct diagnosis, and back then it was called "Spastic Dysphonia". Tommy in Maine.



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Re: About the name spasmodic
Re: About the name spasmodic -- Bill Top of thread Archive
Posted by: Barbara S. White ®
01/29/2006, 03:29:19
Actually my doctor calls it laryngeal dysphonia. It think that is the medical name that doctors who do not deal with SD call it. He's my regular primary doctor and didn't know anything about SD when I started with him but he started me on my way to finding out what I have and he now how two other patients with SD but he still calls it laryngeal dysphonia. It think that is a ligimate name but Spasmodid dysphonia doesn't bother me. It does't even sound negative to me. But use what you feel comfortable with.
Blessings,
Barbara / god4me@comcast.net



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